Wow... So the kids are on Christmas break. Dacotah missed last Wednesday because he came up with the stomach bug which lasted about 36 hours. Not a huge deal, but then he got hit with a bad sinus infection and bilateral conjunctivitis. The local Urgent Care was great with his needs but mommy had to go a bit out of her way to say "DO NOT TOUCH HIM first". :) The nurse was probably one of the friendliest I had ever met and asked before she did anything. It was the first office other than the one I work that allowed me to tell them his height/weight instead of demanding he stand still.The Doctor debated on giving him a shot of antibiotics because his temperature was 103.3!!! But decided against it when I told her he had never had antibiotics in his life. She had a look of utter disbelief then I went on to say Montana had only been given antibiotics once in the last 7 years for strep. She wrote a prescription for liquid amoxil, but we've been unable to administer it as he spits it out. TRUST ME I have literally tried EVERYTHING at this point. The good part at this point it's viral so the antibiotics wouldn't help anyway. His fever is gone. The pink eye is debating what it is going to do. He is getting antibiotics for that as is his mommy. He likes to share.
Christmas this year was so much fun, despite us both being sick. Our extended family came up from NC but because D was sick, we did facetime while daddy and sissy went to visit them in the hotel. My mother-in-law has been phenomenal when she's around Dacotah as sick as he was, she agreed to watch him so I could take my dad to the ER on Friday night. He had fallen and cut his head pretty deep. (he's okay) She kept me updated and when his temperature started going up was just as I was walking back through the door at home. We stayed at the hotel until daddy got home from work. Honestly, I didn't want to be alone with Dacotah and Montana, and it helped pass the time.
Both kids were again blessed with too many gifts between the grandparents and us, but they had a blast. Dacotah's fishing frenzy game, Hungry Hungry Hippos, melissa and doug house, and his remote control cars are hands down his favorite toys. Montana loved her doll bunk bed, weighted blanket, troll pjs, boots, and sweater. She is one of the only kids I know that LOVES getting clothes on Christmas morning.
Dacotah hasn't said much of anything over the past week. Granted he is not feeling good but last night I did get him to say nite nite mama. He's finally saying dada.... 2 years 9 months and he finally said it again!!! It made daddy super happy to say the least.
I have NOT heard back from the DMV about the windshield, I'm not sure how long they usually take but it's been 3 weeks.... Grrr...
His compression vest was not approved through his insurance GRRRR... Thankfully I found out today that he went on daddy's insurance on the 7th of this month, so I'm going to call Excel next Tuesday and get them to try to approve it through Anthem. Good part is the kids still have their medicaid through Jan, so we will be able to get him a new set of braces ordered and delivered as well.
Travis and I talked about taking him to see Dr. Sprouse in June 2017, we are still debating on if we want to attend the conference, but ultimately we decided we needed to get some more information on his genetics since he's not making a lot of progress with his speech. Yes, he is making some.... but it is still very delayed, and it's obvious when you see him with someone younger. It's going to be a long drive to Baltimore, but if we plan it right, we can get him scheduled with speech and dental at UVA prior to his visit in MD.
He's started head banging, he's always thrown things when he gets upset, but now when you tell him no, his body goes limp and he smashes into the floor. He did it earlier when he didn't tea for his sippy cup and he hit the kitchen floor so hard I thought he busted his nose. :( Hopefully OT and PT will be back next week and we can figure out what's causing the issue. I'm still pointing to frustration of not being able to verbally communicate.
Thursday, December 29, 2016
Monday, December 12, 2016
mommy....down...please
I do believe I can say that Dacotah just said his first sentence ever!!!!!!!!!!!!!!! He climbed into his chair at the table (he has no issues getting into it, but he can't get down without help) after he got his cookies he says "Mommy... (slight pause) down (pause) peas." I have been working diligently with him when we are home in the afternoons together and he's slowly but surely making progress. I really think the communication cards will come into play and will be more beneficial because he will point to them and then echo's back what I say they are. They have a term for that "Echolalia" children his age have usually outgrown the need to echo back but with his delays I'm excited for every word he will repeat back.
We went back to see the endocrinologist this morning to start a treatment that will last three months. I debated on talking about it, but I know some people reading this have kids with KS and can benefit from the information given. There is a study done by a physician in Maryland that shows that infants who received Testosterone therapy have shown improvement in their hypotonia and lack of speech. She contributes the lack of speech to the low muscle tone in the face which prevents the words from coming out. Downside is, we don't know how well he will do because the kids in the studies were under a year old. Because we didn't know about his genetic disorder until he was 2.5 it through everything a bit off. But we are praying and hoping that he can have some positive results and feel after talking with the specialist the benefits of attempting outweighs the small risk because it's a very small baby dose. He will receive one shot a month for three months. He goes back in Jan and Feb to see the nurse, and then in March we will go back to see the endocrinologist and update him on any and all progress he has made over the next three months.
The drive to JC was awful. I could tell this morning that Dacotah was not going to travel well. He screamed and threw a fit when daddy put his clothes on, screamed some more over his shoes, cried all they way to Gate City, cried again in the office, threw his toys, screamed the whole time we were in the office, he honestly cried more being held down than he did from the shot (they use numbing cream, which I was really thankful for). He fussed halfway home and finally fell asleep, which then threw his nap off schedule. It's only 2pm................
We sent the paperwork into the DMV last week, I hope to hear from them soon as to whether they approved the medical clearance to tint the van windows which should help a lot with the sun coming in directly on him. If that doesn't work I'm going to conjure up a sheet that will block the sun out of his face.
We have his compression vest sent into the DME company. It's been nearly a week and I called this morning for an update to be told the orthopedist had been out of the office last week that he will be back in tomorrow. I AM REALLY hoping that he sent it in once they sent him the order to the Roanoke office last week the lady is suppose to call and let us know tomorrow.
Dacotah is doing great with pre-school. He's showing interest in the other kids and said his best friends name the other day when Ms. Monica asked him who the little boy was. I love sneaking in (the best you can with a room full of preschoolers who say "baby, your mommy is here". Most of the time he continues playing until he eventually sees me. The pictures and videos I get throughout the day definitely highlight the improvements he's making and I know we are on the right path with the preschool we have chosen.
We have PT with Pat today and then we get to dress up and go to daddy's Christmas party at work. I'm hoping the down time between now and then will help and Dacotah will be more calm. I'm hesitant to take him into a crowd of people because you see him withdraw when they start talking to him. Maybe..... we will eventually get him a shirt that says My name is Dacotah I am 2 thanks for asking.. lol. In the meantime we will continue taking one step at a time.
We went back to see the endocrinologist this morning to start a treatment that will last three months. I debated on talking about it, but I know some people reading this have kids with KS and can benefit from the information given. There is a study done by a physician in Maryland that shows that infants who received Testosterone therapy have shown improvement in their hypotonia and lack of speech. She contributes the lack of speech to the low muscle tone in the face which prevents the words from coming out. Downside is, we don't know how well he will do because the kids in the studies were under a year old. Because we didn't know about his genetic disorder until he was 2.5 it through everything a bit off. But we are praying and hoping that he can have some positive results and feel after talking with the specialist the benefits of attempting outweighs the small risk because it's a very small baby dose. He will receive one shot a month for three months. He goes back in Jan and Feb to see the nurse, and then in March we will go back to see the endocrinologist and update him on any and all progress he has made over the next three months.
The drive to JC was awful. I could tell this morning that Dacotah was not going to travel well. He screamed and threw a fit when daddy put his clothes on, screamed some more over his shoes, cried all they way to Gate City, cried again in the office, threw his toys, screamed the whole time we were in the office, he honestly cried more being held down than he did from the shot (they use numbing cream, which I was really thankful for). He fussed halfway home and finally fell asleep, which then threw his nap off schedule. It's only 2pm................
We sent the paperwork into the DMV last week, I hope to hear from them soon as to whether they approved the medical clearance to tint the van windows which should help a lot with the sun coming in directly on him. If that doesn't work I'm going to conjure up a sheet that will block the sun out of his face.
We have his compression vest sent into the DME company. It's been nearly a week and I called this morning for an update to be told the orthopedist had been out of the office last week that he will be back in tomorrow. I AM REALLY hoping that he sent it in once they sent him the order to the Roanoke office last week the lady is suppose to call and let us know tomorrow.
Dacotah is doing great with pre-school. He's showing interest in the other kids and said his best friends name the other day when Ms. Monica asked him who the little boy was. I love sneaking in (the best you can with a room full of preschoolers who say "baby, your mommy is here". Most of the time he continues playing until he eventually sees me. The pictures and videos I get throughout the day definitely highlight the improvements he's making and I know we are on the right path with the preschool we have chosen.
We have PT with Pat today and then we get to dress up and go to daddy's Christmas party at work. I'm hoping the down time between now and then will help and Dacotah will be more calm. I'm hesitant to take him into a crowd of people because you see him withdraw when they start talking to him. Maybe..... we will eventually get him a shirt that says My name is Dacotah I am 2 thanks for asking.. lol. In the meantime we will continue taking one step at a time.
Monday, December 5, 2016
Good changes are happening
Changes are happening every day at our house. Dacotah had is dental surgery at UVA in Charlottesville. He also had a meeting with the feeding and speech specialist during our visit. We got her report back in the mail yesterday and mommy's concerns were confirmed. She said Dacotah's speech was 66-75% delayed for his age. He is talking on an 18-21 month instead of a 33-36 month level, but she is pleased with the progress that he is making. As we have said all along, slow and steady, one step at a time. She also confirmed his Autistic Disorder through her office evaluation, to what extent it will affect his life, we don't know, we just know for the time being it causes the speech to be delayed and a skip in his "normal" routine without prepping and be a cause for concern.
OT is excited to see the changes he is making. We found if we take him to Wal-Mart for example and we strap him into the buggy tight he does good. If he's not strapped in, or is allowed to walk with his backpack, he end up in a meltdown. So for now we will continue to strap him down and figure out the next stage once he outgrows the buggy. I do not look forward to that day.
PT measured him for a compression vest, that should help with his hypotonia and anxiety levels. We are working with his core and trying to get it built up. It's slow and steady but there is hope. There is a doctor in JC who is willing to try a trial on Dacotah to see if it will help with his low muscle tone, which adversely affects his speech. We should know what benefits he gains from it by the time he turns three. Please pray that it works, there is a study that was published that showed kids with his genetic disorder showed remarkable improvement, but it was given before they turned a year old. There is not any research to prove it to be a definite benefit for Dacotah, but I'm praying that it will. For privacy reasons we will leave it at that, I will update the results as we see them.
For the car issue, we have submitted a DMV waiver for tinted van windows that will help block the sun from coming into the van when we are driving. We have found if we put our hands up and block the sunlight he's not screaming bloody murder down the road. I'm hoping the tinted windows will make traveling with him a life changer as well.
I started making him a communication board. I was very hesitant at first because I didn't want it to delay him further. After talking to multiple therapist we are using it as a brief tool, until he can say the words. Right now his word count without Echoing is roughly 20-30 words. To put this into perspective he should be saying 200+ words with meaning. He can say a lot, but he repeats words that you say. Words that he can't say he makes a spit sounding s..... :( He can say stuck but was sssssssssssss for truck. So I'm hoping by seeing the words and by us saying the words to him, he can understand them better.
Sleeping:...... This is one I am super thankful for, still going to sleep without and medications to assist. However, he REFUSES to take a nap, or go to bed unless mommy is home. If I get him to sleep he takes a full nap, and sleeps from 8:30ish-6ish in the morning ( thanks to the time change). I'll take it!!!!!!!!!!!!!!
OT is excited to see the changes he is making. We found if we take him to Wal-Mart for example and we strap him into the buggy tight he does good. If he's not strapped in, or is allowed to walk with his backpack, he end up in a meltdown. So for now we will continue to strap him down and figure out the next stage once he outgrows the buggy. I do not look forward to that day.
PT measured him for a compression vest, that should help with his hypotonia and anxiety levels. We are working with his core and trying to get it built up. It's slow and steady but there is hope. There is a doctor in JC who is willing to try a trial on Dacotah to see if it will help with his low muscle tone, which adversely affects his speech. We should know what benefits he gains from it by the time he turns three. Please pray that it works, there is a study that was published that showed kids with his genetic disorder showed remarkable improvement, but it was given before they turned a year old. There is not any research to prove it to be a definite benefit for Dacotah, but I'm praying that it will. For privacy reasons we will leave it at that, I will update the results as we see them.
For the car issue, we have submitted a DMV waiver for tinted van windows that will help block the sun from coming into the van when we are driving. We have found if we put our hands up and block the sunlight he's not screaming bloody murder down the road. I'm hoping the tinted windows will make traveling with him a life changer as well.
I started making him a communication board. I was very hesitant at first because I didn't want it to delay him further. After talking to multiple therapist we are using it as a brief tool, until he can say the words. Right now his word count without Echoing is roughly 20-30 words. To put this into perspective he should be saying 200+ words with meaning. He can say a lot, but he repeats words that you say. Words that he can't say he makes a spit sounding s..... :( He can say stuck but was sssssssssssss for truck. So I'm hoping by seeing the words and by us saying the words to him, he can understand them better.
Sleeping:...... This is one I am super thankful for, still going to sleep without and medications to assist. However, he REFUSES to take a nap, or go to bed unless mommy is home. If I get him to sleep he takes a full nap, and sleeps from 8:30ish-6ish in the morning ( thanks to the time change). I'll take it!!!!!!!!!!!!!!
Thursday, November 17, 2016
Feeling down, alone, and confused.
I've honestly debated on whether to keep the blog up and running or just let it fall by the wayside. There is something about it that is calming and it helps track everything that is changing with Dacotah. I am going to put a disclaimer out on this one so I can get it off my chest: If you are reading this and think it's over exaggerated information written by a psycho mom, then please by all means stop reading.
Anyway this past week one of our church Deacons pulled me aside one day. (A very quick little back story, I had a good childhood growing up as a young child, but as I got older a lot of negative things were said to me and about me. My mom suffered from undiagnosed bipolar disorder (I could tell you straight up what kind of mood she was in by the sound of her feet in the morning) and my dad still suffers from severe alcoholism. I have become stronger but for years I dealt with severe anger issues and still have moments where I snap faster than a dry twig when something doesn't go just according to what was planned), I was always afraid I would be too much like my mom and was scared of the parenting I would be able to give our children. However, the Deacon says something along the lines "I just wanted to let you know, you are doing a great job with your kids. I know with your background you weren't too sure, but you have done a great job with Montana and the love that she has, and getting everything lined up and getting what Dacotah needs, I just wanted to tell you you are doing a good job, even if you don't see it, or when you are doubting yourself". I know my face had to have lit up like a firework on the 4th of July. I had been so down and out, and for someone to take the time to say face to face that I'm doing a good job was music to my ears.
I have thought and considered what someone on the outside looking in must see. To most people it looks as though Dacotah is a normal 2.5 year old little boy, who is shy and doesn't talk. I get that. If I were out in town and someone's kid is crying and running around I would obviously wonder why they weren't making them sit down and mind. Even with Dacotah, in the rare chance Travis and I go out by ourselves I think that about someone else's kid. Maybe it's me that has the issue because I'm always worried about what other people are thinking about our son. I feel like I'm running around in a never ending circle between scheduling Dacotah's therapies and Montana's appointments, while working full time and going to school full time. I honestly cannot wait to graduate in May with my second associates degree. At that point I can say I am done with school and I can focus on the little things again.
Dacotah looked at the moon with Travis the other night and says "what's that" in his own words. Travis says "Moon" and as plain as day Dacotah says Moon. He says stars, bridge, don't fit a few other words here and there. I'm thankful for all that he does say, and I'm praying and waiting for the day when he can say everything his little heart wants to tell us without him having to repeat it back.
PT went to his school this morning, I took a moment to talk to her when I picked Dacotah up, and she said she can see other areas that he's not quite there yet. She said "he is trying really hard to keep up with the kids his age, but we need to work more with him". She showed me a compression vest that she wants to try the Tuesday after Thanksgiving. I'm not sure what it does exactly other than helps calm him down, OT was also excited about it when I told her later this evening. So we will see.
I picked Dacotah up and while I was talking to Pat (the PT) he got a bit impatient and wanted to go get in the van (Our normal routine). I had to go back to work and take him with me. Teresa wasn't working the front and he stops dead in his tracks and then he screamed all the way down the hall to my office. I finally got him to look at me and calmed him down. Teresa took him in the workup room with her to give B12 shots while I drew labs. He was okay until a patient started talking to him. (In Teresa's words to the OT.) "He drooped his head down and it was like he withdrew inside of himself and wanted out of the room". He proceeded to cry every time someone talked to him, Finally Teresa just started telling the patients Dacotah wasn't in a good mood and asked that they not talk to him. Mel (OT) shows up at the office and she sees first hand what I have been talking about for the past few months with the melt down that once one starts he is that way the rest of the day. At the time of writing this he's had at least 15 screaming fits and no he isn't tired he had his 2 hour nap. Mel thinks he is getting frustrated because he's wanting to talk to us and he can't. He bit his tent at the office (which she saw). He's biting my shirt when he gets really frustrated. In her words most kids go through a biting phase but this is different.
As I posted on facebook earlier. I don't want to be the psycho mom who stretches out everything I see to make the fish look bigger than it was. I tell it honestly and the way that I see it. I don't want pity, I just want people to understand the following 3 things:
Genetic disorders exists and they suck. (there's not a better word) Regardless if it's Down's, Hurler's, Klinefelters, etc. The kids are not normal and have a harder time figuring the simple things out.
Sensory Processing Order exists and it sucks too. Anything from loud noises, a change in a person sitting at the front desk, or sunlight coming inside the vehicle, is enough to trigger a melt down.
Just because they don't look different doesn't mean they aren't. I have pondered many times of getting a shirt that says "I may look normal but I have an extra chromosome and need extra understanding." I want to get us shirts that says "Please be understanding of the things our child has that you cannot see with your naked eye".
In the end there is no simple answer. People will never understand completely, and I guess in order for me to grow as a mom, I need to be okay with that and move on.
Anyway this past week one of our church Deacons pulled me aside one day. (A very quick little back story, I had a good childhood growing up as a young child, but as I got older a lot of negative things were said to me and about me. My mom suffered from undiagnosed bipolar disorder (I could tell you straight up what kind of mood she was in by the sound of her feet in the morning) and my dad still suffers from severe alcoholism. I have become stronger but for years I dealt with severe anger issues and still have moments where I snap faster than a dry twig when something doesn't go just according to what was planned), I was always afraid I would be too much like my mom and was scared of the parenting I would be able to give our children. However, the Deacon says something along the lines "I just wanted to let you know, you are doing a great job with your kids. I know with your background you weren't too sure, but you have done a great job with Montana and the love that she has, and getting everything lined up and getting what Dacotah needs, I just wanted to tell you you are doing a good job, even if you don't see it, or when you are doubting yourself". I know my face had to have lit up like a firework on the 4th of July. I had been so down and out, and for someone to take the time to say face to face that I'm doing a good job was music to my ears.
I have thought and considered what someone on the outside looking in must see. To most people it looks as though Dacotah is a normal 2.5 year old little boy, who is shy and doesn't talk. I get that. If I were out in town and someone's kid is crying and running around I would obviously wonder why they weren't making them sit down and mind. Even with Dacotah, in the rare chance Travis and I go out by ourselves I think that about someone else's kid. Maybe it's me that has the issue because I'm always worried about what other people are thinking about our son. I feel like I'm running around in a never ending circle between scheduling Dacotah's therapies and Montana's appointments, while working full time and going to school full time. I honestly cannot wait to graduate in May with my second associates degree. At that point I can say I am done with school and I can focus on the little things again.
Dacotah looked at the moon with Travis the other night and says "what's that" in his own words. Travis says "Moon" and as plain as day Dacotah says Moon. He says stars, bridge, don't fit a few other words here and there. I'm thankful for all that he does say, and I'm praying and waiting for the day when he can say everything his little heart wants to tell us without him having to repeat it back.
PT went to his school this morning, I took a moment to talk to her when I picked Dacotah up, and she said she can see other areas that he's not quite there yet. She said "he is trying really hard to keep up with the kids his age, but we need to work more with him". She showed me a compression vest that she wants to try the Tuesday after Thanksgiving. I'm not sure what it does exactly other than helps calm him down, OT was also excited about it when I told her later this evening. So we will see.
I picked Dacotah up and while I was talking to Pat (the PT) he got a bit impatient and wanted to go get in the van (Our normal routine). I had to go back to work and take him with me. Teresa wasn't working the front and he stops dead in his tracks and then he screamed all the way down the hall to my office. I finally got him to look at me and calmed him down. Teresa took him in the workup room with her to give B12 shots while I drew labs. He was okay until a patient started talking to him. (In Teresa's words to the OT.) "He drooped his head down and it was like he withdrew inside of himself and wanted out of the room". He proceeded to cry every time someone talked to him, Finally Teresa just started telling the patients Dacotah wasn't in a good mood and asked that they not talk to him. Mel (OT) shows up at the office and she sees first hand what I have been talking about for the past few months with the melt down that once one starts he is that way the rest of the day. At the time of writing this he's had at least 15 screaming fits and no he isn't tired he had his 2 hour nap. Mel thinks he is getting frustrated because he's wanting to talk to us and he can't. He bit his tent at the office (which she saw). He's biting my shirt when he gets really frustrated. In her words most kids go through a biting phase but this is different.
As I posted on facebook earlier. I don't want to be the psycho mom who stretches out everything I see to make the fish look bigger than it was. I tell it honestly and the way that I see it. I don't want pity, I just want people to understand the following 3 things:
Genetic disorders exists and they suck. (there's not a better word) Regardless if it's Down's, Hurler's, Klinefelters, etc. The kids are not normal and have a harder time figuring the simple things out.
Sensory Processing Order exists and it sucks too. Anything from loud noises, a change in a person sitting at the front desk, or sunlight coming inside the vehicle, is enough to trigger a melt down.
Just because they don't look different doesn't mean they aren't. I have pondered many times of getting a shirt that says "I may look normal but I have an extra chromosome and need extra understanding." I want to get us shirts that says "Please be understanding of the things our child has that you cannot see with your naked eye".
In the end there is no simple answer. People will never understand completely, and I guess in order for me to grow as a mom, I need to be okay with that and move on.
Friday, November 4, 2016
The IEP meeting results and one annoyed momma
We had Dacotah's IEP meeting. I will say I am glad he still gets his Speech, OT, PT, and developmental therapy after he turns three. The meeting was okay but I realized everyone has their own opinion on our son and what his problem is.
I'll back up a bit. On Monday we went back to see the Developmental specialist, for those who are just now reading the blog, she was the one who did the test that found he had Klinefelter's. She was also the one who said he definitely had sensory processing disorder. She was also the one who did two different tests to confirm her suspicion of Autism mild to moderate level II. We had an in depth discussion about the progress Dacotah has been making and where he is still lacking. While we were there Dacotah threw his hands up and shook his up body as he said Nooooooooooooo, when something didn't fit back in the box the way it was suppose to. She asked if he did this normally and he does, quite a bit and more often now than he did. She said "That's part of his stimming". She asked some other questions and said she would see him back in a year, unless he starts to back track and stops talking completely.
Fast forward back to the IEP meeting. I was left feeling (I was not alone Travis said he felt the same way) that it was all in our imagination what we see at home, vs what someone saw him do or not do at school in the brief 30-60 minute glimpse into his life that they saw. I feel as though what we said and what the specialist said made no change, and we were handed a paper and told "they were not there to diagnose him medically, but educationally and on their scale he does not have autism".
I can say I was deeply heated and split. I am not trying to label our son. I am trying to find an answer.
Everyone agrees he is moderately speech delayed and talks on a level of a 1 year old 10 month. For easy math he is 10 months behind in speech. He is developmentally delayed, which everyone agrees. So from my medical background in the military, why does he have excessive speech delay despite having speech therapy on a weekly basis since April? Why did he lose the words he use to say? Yes, we made A LOT OF PROGRESS when we got him to say no that he didn't want something, or yes he did want this or that. IT MADE our lives 100x better. He sleeps... did I mention we went months without it, oh wait that was years, 2.5 years to be exact that he didn't sleep, didn't nap, and today I felt that everything I said was knocked down.
It came to the point where they said well we have to look at his behavior everywhere, not just how he does at home. Basically if he had autism he would do those things you say in all of his environments. Ummm.... Did they even hear me when I said his OT went out with us, and was not able to help that he lost it at Wal-mart???? I am glad he does amazing in preschool and that there does not seem to be any issues other than he doesn't talk in understandable sentences.
But please do not talk to me as though I have no idea what we have dealt with at home, in the car.... Oh, I was even told "my daughter bucks up when I go to buckle her in too" and several in the room laughed. I should have asked if her daughter screamed nonstop for hours on end in the car too. Does her child refuse to wear sunglasses to keep the sun out of her eyes so she's not screaming when it plays peek a boo. OH I have that on Video, in case anyone would like view our world. Have you seen him in a crowded room where he whimpers mommy while scratching his belly? Have you seen him scream at his sisters birthday party and wish he would stop screaming so you could clear your head and personally thank whoever took him outside so he could wander around and be happy.
I am so frustrated and the more I think about the events the more aggravated I am becoming. I can honestly see why parents give up fighting. They are made to feel like they have no clue, that they are stupid. I will take someone that went to Medical schools opinion over a psychologists opinion, but do NOT PLAY me as stupid and that I don't know my child. I know what HE use to do and what he does not do. Yes he is making progress, and for that I am thankful, but he is not "normal" in the sense of a normal child for his age.
I will backtrack in a blog in the next day or two the trip to Wal-Mart with the OT.
I'll back up a bit. On Monday we went back to see the Developmental specialist, for those who are just now reading the blog, she was the one who did the test that found he had Klinefelter's. She was also the one who said he definitely had sensory processing disorder. She was also the one who did two different tests to confirm her suspicion of Autism mild to moderate level II. We had an in depth discussion about the progress Dacotah has been making and where he is still lacking. While we were there Dacotah threw his hands up and shook his up body as he said Nooooooooooooo, when something didn't fit back in the box the way it was suppose to. She asked if he did this normally and he does, quite a bit and more often now than he did. She said "That's part of his stimming". She asked some other questions and said she would see him back in a year, unless he starts to back track and stops talking completely.
Fast forward back to the IEP meeting. I was left feeling (I was not alone Travis said he felt the same way) that it was all in our imagination what we see at home, vs what someone saw him do or not do at school in the brief 30-60 minute glimpse into his life that they saw. I feel as though what we said and what the specialist said made no change, and we were handed a paper and told "they were not there to diagnose him medically, but educationally and on their scale he does not have autism".
I can say I was deeply heated and split. I am not trying to label our son. I am trying to find an answer.
Everyone agrees he is moderately speech delayed and talks on a level of a 1 year old 10 month. For easy math he is 10 months behind in speech. He is developmentally delayed, which everyone agrees. So from my medical background in the military, why does he have excessive speech delay despite having speech therapy on a weekly basis since April? Why did he lose the words he use to say? Yes, we made A LOT OF PROGRESS when we got him to say no that he didn't want something, or yes he did want this or that. IT MADE our lives 100x better. He sleeps... did I mention we went months without it, oh wait that was years, 2.5 years to be exact that he didn't sleep, didn't nap, and today I felt that everything I said was knocked down.
It came to the point where they said well we have to look at his behavior everywhere, not just how he does at home. Basically if he had autism he would do those things you say in all of his environments. Ummm.... Did they even hear me when I said his OT went out with us, and was not able to help that he lost it at Wal-mart???? I am glad he does amazing in preschool and that there does not seem to be any issues other than he doesn't talk in understandable sentences.
But please do not talk to me as though I have no idea what we have dealt with at home, in the car.... Oh, I was even told "my daughter bucks up when I go to buckle her in too" and several in the room laughed. I should have asked if her daughter screamed nonstop for hours on end in the car too. Does her child refuse to wear sunglasses to keep the sun out of her eyes so she's not screaming when it plays peek a boo. OH I have that on Video, in case anyone would like view our world. Have you seen him in a crowded room where he whimpers mommy while scratching his belly? Have you seen him scream at his sisters birthday party and wish he would stop screaming so you could clear your head and personally thank whoever took him outside so he could wander around and be happy.
I am so frustrated and the more I think about the events the more aggravated I am becoming. I can honestly see why parents give up fighting. They are made to feel like they have no clue, that they are stupid. I will take someone that went to Medical schools opinion over a psychologists opinion, but do NOT PLAY me as stupid and that I don't know my child. I know what HE use to do and what he does not do. Yes he is making progress, and for that I am thankful, but he is not "normal" in the sense of a normal child for his age.
I will backtrack in a blog in the next day or two the trip to Wal-Mart with the OT.
Monday, October 10, 2016
Leaps and bounds
Wow what a difference in the past three weeks. We started PT with Ms. Pat, she pointed out the low muscle tone and weakness that Dacotah has. He prefers his left side so we are working on "wheelbarrow" and dragging him across the floor in a seated position so he starts using his abdominal muscles more. This will help him be more comfortable sitting instead of leaning/laying down all the time. This is normal in kids with KS, so the good thing is we caught it early enough that there is still hope everything will get corrected.
He's talking!!! Not a lot but he's talking some more and repeating when we tell him he has to say something in order to get it. We had a day where he wanted cookies and the following "conversation took place"
D *points to the cookies on the shelf* Cookies?
M: How many do you want 1 or 2?
D: 2!
M: Say please
D: peas
M: *hands him 2, and he turns towards sissy and gives her one*
D: Sissy
M:Say thank you
D: tanks
Ms. Katie the speech therapist is happy with his progress, and while no it's not full on sentences they would expect it's progress. Somehow it wasn't communicated that he has KS, so when I brought it up last week, she was shocked but said it wasn't anything to worry about yet. Some kids with KS don't talk at all, or have a very hard time with socialization, we are working diligently each day to get him use to not only talking, but playing with his sister, and with us. He has show some great improvement.
Ms. Mel is coming tomorrow for OT, the past few times she has pulled him away into the den and worked one on one with him. She's able to maintain his attention for a longer time span. She thinks he is making more progress more rapidly to which we all contribute it to him sleeping.... Oh yes let me tell you the fantastic update
Dacotah sleeps..... without any medication to help him sleep!!!!!!!! I believe in short term medication use and after about four weeks of the visteril on a nightly basis, he started going to sleep with nursing, and then wasn't waking up again until around 6am to nurse again before the sun came up. Well..... I decided to do a trial of not going him the medicine to see how he does. We are at a week, not only is he sleeping okay *knock on the wood* we have cut out all nursing except the night time one for bedtime. He is taking naps during the day (I won't say he doesn't whine to nurse but I just tell him they are night night until bedtime). STEPS and BIG STEPS.... I am hopeful that it will continue.
We got news from the orthotics that his ankle braces are in. Mamaw bought him new shoes in two sizes (we are hopeful the braces will fit into the shoes). Honestly I dread Thursday, but he may surprise us and be very much okay with them. I talked to PT about them on Tuesday last week and she said if he wears them, it will fix his ligament issues, and maybe in a few years he can graduate to just having inserts inside his shoes with no braces. (long term goal) Also attributed to the KS.
We have him scheduled with an endocrinologist in November in JC, I've been doing research and when parents find out their baby is going to be born with KS, they schedule Testerone shots to be given three times during their first year. I'm going to see what our options are given he's past that age, the nurse at the office said there is a possibility they will still agree to give it a try based on his T levels etc. I'll know more after that visit.
He has done fantastic in preschool. I'm hoping soon he will be able to go 4-5 half days instead of the 3, I was super hesitant to commit to more days because I wasn't sure how well he would adapt, but again other than the lack of talking he's right with his sister enjoying music time, and playing with his friends.
He's talking!!! Not a lot but he's talking some more and repeating when we tell him he has to say something in order to get it. We had a day where he wanted cookies and the following "conversation took place"
D *points to the cookies on the shelf* Cookies?
M: How many do you want 1 or 2?
D: 2!
M: Say please
D: peas
M: *hands him 2, and he turns towards sissy and gives her one*
D: Sissy
M:Say thank you
D: tanks
Ms. Katie the speech therapist is happy with his progress, and while no it's not full on sentences they would expect it's progress. Somehow it wasn't communicated that he has KS, so when I brought it up last week, she was shocked but said it wasn't anything to worry about yet. Some kids with KS don't talk at all, or have a very hard time with socialization, we are working diligently each day to get him use to not only talking, but playing with his sister, and with us. He has show some great improvement.
Ms. Mel is coming tomorrow for OT, the past few times she has pulled him away into the den and worked one on one with him. She's able to maintain his attention for a longer time span. She thinks he is making more progress more rapidly to which we all contribute it to him sleeping.... Oh yes let me tell you the fantastic update
Dacotah sleeps..... without any medication to help him sleep!!!!!!!! I believe in short term medication use and after about four weeks of the visteril on a nightly basis, he started going to sleep with nursing, and then wasn't waking up again until around 6am to nurse again before the sun came up. Well..... I decided to do a trial of not going him the medicine to see how he does. We are at a week, not only is he sleeping okay *knock on the wood* we have cut out all nursing except the night time one for bedtime. He is taking naps during the day (I won't say he doesn't whine to nurse but I just tell him they are night night until bedtime). STEPS and BIG STEPS.... I am hopeful that it will continue.
We got news from the orthotics that his ankle braces are in. Mamaw bought him new shoes in two sizes (we are hopeful the braces will fit into the shoes). Honestly I dread Thursday, but he may surprise us and be very much okay with them. I talked to PT about them on Tuesday last week and she said if he wears them, it will fix his ligament issues, and maybe in a few years he can graduate to just having inserts inside his shoes with no braces. (long term goal) Also attributed to the KS.
We have him scheduled with an endocrinologist in November in JC, I've been doing research and when parents find out their baby is going to be born with KS, they schedule Testerone shots to be given three times during their first year. I'm going to see what our options are given he's past that age, the nurse at the office said there is a possibility they will still agree to give it a try based on his T levels etc. I'll know more after that visit.
He has done fantastic in preschool. I'm hoping soon he will be able to go 4-5 half days instead of the 3, I was super hesitant to commit to more days because I wasn't sure how well he would adapt, but again other than the lack of talking he's right with his sister enjoying music time, and playing with his friends.
Wednesday, October 5, 2016
Honest Mommy post
This is a post on my honest personal thoughts.
This is not going to be a positively optimistic post, these are my true feelings as a mom and my constant everyday mind struggle that I am trying to cope with. If that offends you please stop reading and I will post optimistically in the next post but today I just want to cry, be angry, frustrated and vent.
How am I feeling:
Simply stated I have reached the point I am questioning everything I am doing. Obviously the genetics are black and white. But am I making this out to be worse than it really is? He needs braces for his feet confirmed by the PT, the OT, the orthotics doc and the DO agree that it's best for him. We haven't gotten them, yet, but I know he is going to hate them and it's going to be the battle of the wills as he learns to walk "again" corrected. I guess I know he needs them but I still question myself. I want to make sure we do the best thing possible to give him the best chance at being "normal" whatever normal that will be.
I guess what really bothers me is everyone sees the improvement in his speech which I am super thankful for, but I don't call it a huge improvement when the only words you really understand minus a handful is the ones you tell him to say. For example he will go to the freezer, point at the door "this", we open the door he points to the chicken fries, say please he replies "peas" if he wants them heated he will point to the microwave (gasp yep we have one because when he wants to eat he wants it that minute and if you miss it, he will go hours refusing to eat) he then says "bot" for tablet say thank you, he replies "tanks" and leans over the couch or trampoline and eats. I get it maybe I am hypercritical but I want him to be able to tell me when he is too hot, too cold, I'm hungry, thirty, feeling sick, etc. maybe I'm impatient but I'm sick of people telling me he is fine and normal. Yes I have gotten visibly upset and walked out of the room and have told Travis to figure it out because I can't understand what Dacotah is saying he needs. There are times Travis does the same thing, it's frustrating but it is the part of our life others don't see. They don't see me cry because I see him with a younger child and he just watches them talk as he sits quietly, it breaks my heart!
I sooo wish it were. I wish he didn't have the genetic problem which causes him to need the braces, which causes the chronic sleep problems, which causes the speech delays, which causes the low muscle tone. I wish he were 100% healthy and normal, but the handicap pass in the van reminds us that he isn't normal. He will have issues at school, home, with talking, etc. Our lives revolve around PT, OT, speech, visits to the orthotics, 8 hour trips to Charlottesville to get dental work, and countless hours of redirection, calming techniques, etc at home so when he goes to preschool he seems "normal with a speech delay". I wish for a moment they could see through our eyes instead of the one hour glimpse during therapy. Pat his PT was able to touch him for about 20 minutes out of his scheduled hour before he was done, he didn't want anyone touching him and went off to be alone. I come home and he cuddles up. I know he feels safe, and I wish I could hold him like that forever. I wouldn't change the schedules and working around it, I want to give him the boost with Early Intervention and help him as much as possible.
There are support groups for his genetics, everyone is afraid to tell their son or even their family and friends that they have Klinefelter's, heck I can't say that I blame them. I cringe at the thoughts of the next 12 years, puberty, what can happen and what happens in 99% of XXY patients. How do you tell your son at age 12 you need him to go to the doctor to save his sperm so hopefully he can have kids of his own when he gets married years later. Or you choose not to give him that option and just say best of luck. What parent wants to make that choice??? I know you say I have 10 years, but I plan early, the costs for it are in the thousands and there are no guarantees. I wonder to if he would resent us later if we chose not to do anything and let nature take its course. I mean really most men don't find out until in their 20s, He's 2.5!
But let me tell you what he can do
He can give you the biggest smile and hug you have ever had or seen. He can follow directions to a T. He could climb Mt. Everest in record time (or the back of the couch, up the slide, over the jungle gym). He can follow directions like find your shoes, put this in the sink, or if he makes a mess he says "uh oh mess" and grabs a towel or toilet paper (ha for big water spills) and "cleans" it up without being told. He's mommy and daddy's big helper. He adores his big sister and refuses to eat a cookie if you don't give him two so he can share. He will babble, and he will scream and throw a fit when he doesn't get his way. He dances to his favorite music "Light it Up" He is special, he is our superman, and we will get through the obstacles!
So even if I question, second guess, get downright emotional, feel frustrated, angry, annoyed, excited, or any other adjective, that's okay. It's healing it's working through the pain as a mom knowing that it's going to take a little longer but there is nothing I could have done to prevent it. God gave us a son and He knew He could trust us to give him the best life possible and even when I feel discouraged as a mom I am thankful for our son! So together we are going to "Light it up and keep moving forward one step at a time"
This is not going to be a positively optimistic post, these are my true feelings as a mom and my constant everyday mind struggle that I am trying to cope with. If that offends you please stop reading and I will post optimistically in the next post but today I just want to cry, be angry, frustrated and vent.
How am I feeling:
Simply stated I have reached the point I am questioning everything I am doing. Obviously the genetics are black and white. But am I making this out to be worse than it really is? He needs braces for his feet confirmed by the PT, the OT, the orthotics doc and the DO agree that it's best for him. We haven't gotten them, yet, but I know he is going to hate them and it's going to be the battle of the wills as he learns to walk "again" corrected. I guess I know he needs them but I still question myself. I want to make sure we do the best thing possible to give him the best chance at being "normal" whatever normal that will be.
I guess what really bothers me is everyone sees the improvement in his speech which I am super thankful for, but I don't call it a huge improvement when the only words you really understand minus a handful is the ones you tell him to say. For example he will go to the freezer, point at the door "this", we open the door he points to the chicken fries, say please he replies "peas" if he wants them heated he will point to the microwave (gasp yep we have one because when he wants to eat he wants it that minute and if you miss it, he will go hours refusing to eat) he then says "bot" for tablet say thank you, he replies "tanks" and leans over the couch or trampoline and eats. I get it maybe I am hypercritical but I want him to be able to tell me when he is too hot, too cold, I'm hungry, thirty, feeling sick, etc. maybe I'm impatient but I'm sick of people telling me he is fine and normal. Yes I have gotten visibly upset and walked out of the room and have told Travis to figure it out because I can't understand what Dacotah is saying he needs. There are times Travis does the same thing, it's frustrating but it is the part of our life others don't see. They don't see me cry because I see him with a younger child and he just watches them talk as he sits quietly, it breaks my heart!
I sooo wish it were. I wish he didn't have the genetic problem which causes him to need the braces, which causes the chronic sleep problems, which causes the speech delays, which causes the low muscle tone. I wish he were 100% healthy and normal, but the handicap pass in the van reminds us that he isn't normal. He will have issues at school, home, with talking, etc. Our lives revolve around PT, OT, speech, visits to the orthotics, 8 hour trips to Charlottesville to get dental work, and countless hours of redirection, calming techniques, etc at home so when he goes to preschool he seems "normal with a speech delay". I wish for a moment they could see through our eyes instead of the one hour glimpse during therapy. Pat his PT was able to touch him for about 20 minutes out of his scheduled hour before he was done, he didn't want anyone touching him and went off to be alone. I come home and he cuddles up. I know he feels safe, and I wish I could hold him like that forever. I wouldn't change the schedules and working around it, I want to give him the boost with Early Intervention and help him as much as possible.
There are support groups for his genetics, everyone is afraid to tell their son or even their family and friends that they have Klinefelter's, heck I can't say that I blame them. I cringe at the thoughts of the next 12 years, puberty, what can happen and what happens in 99% of XXY patients. How do you tell your son at age 12 you need him to go to the doctor to save his sperm so hopefully he can have kids of his own when he gets married years later. Or you choose not to give him that option and just say best of luck. What parent wants to make that choice??? I know you say I have 10 years, but I plan early, the costs for it are in the thousands and there are no guarantees. I wonder to if he would resent us later if we chose not to do anything and let nature take its course. I mean really most men don't find out until in their 20s, He's 2.5!
But let me tell you what he can do
He can give you the biggest smile and hug you have ever had or seen. He can follow directions to a T. He could climb Mt. Everest in record time (or the back of the couch, up the slide, over the jungle gym). He can follow directions like find your shoes, put this in the sink, or if he makes a mess he says "uh oh mess" and grabs a towel or toilet paper (ha for big water spills) and "cleans" it up without being told. He's mommy and daddy's big helper. He adores his big sister and refuses to eat a cookie if you don't give him two so he can share. He will babble, and he will scream and throw a fit when he doesn't get his way. He dances to his favorite music "Light it Up" He is special, he is our superman, and we will get through the obstacles!
So even if I question, second guess, get downright emotional, feel frustrated, angry, annoyed, excited, or any other adjective, that's okay. It's healing it's working through the pain as a mom knowing that it's going to take a little longer but there is nothing I could have done to prevent it. God gave us a son and He knew He could trust us to give him the best life possible and even when I feel discouraged as a mom I am thankful for our son! So together we are going to "Light it up and keep moving forward one step at a time"
Saturday, September 17, 2016
Peek a boo!
We have done a lot in the last two weeks. We went to visit uncle Wes, Aunt Ashley, and baby Caleb last weekend. We had a great time. The drive down was pretty rough from the state line to their house but overall it was okay.
mommy did have a moment of sadness when I realized just how much he should be saying and doesn't. But I also saw just how much he does do that just a few months back he couldn't/ didn't do. We went to the train museum and he of course loved it. Both kids love trains but Dacotah shakes with excitement over and over again. But guess what he now points and says look!!!!!!!!!! Eeekkkk. Later Saturday evening we went to the Duke vs. Wake Forest game (this was Dacotah's second game). Dacotah did good about 3 minutes into the game but then he wanted to walk and run around the concession stands. I am thankful for his backpack monkey. He stayed outside until the end of the first quarter and his daddy took him inside the Players Lounge so he could run and play while daddy watched the game on the big screen. I offered to switch out at halftime but daddy said they were both comfortable and to enjoy the game with sissy, Ashley, and Caleb outside. If you had told me four years ago I'd love football I would say you were crazy, now I can't wait until Saturday's to watch both TN and Duke play. Unfortunately Wake Forest won and Duke lost. After the game we went inside to visit Uncle Wes and even though it was loud and a lot of strange people Dacotah stayed calm! Another plus. He interacted and played with Caleb when we got back home, they had so much fun and love one another a lot. We left early Sunday to come back before the sun headed West. Dacotah rode the entire five hours back with barely a whimper.
Dacotah had OT and Speech this week. We get to keep his speech therapist Katie (the other one is named Katie also, but he related so well with this one so we requested to keep her even though the first Katie was coming back from maternity leave). Katie is very excited to see him trying to talk more! This week we tried putting him in underwear because he kept taking his pullups off. I came home from work and said "Dacotah do you have paw patrol" he nods his head yes and then gets excited and says "mommy, look"!!!!!!!!!!!!!! He said two words without prompting!!!!!!! I cannot begin to tell you how amazing that is to hear... Oh wait you already know that :) He's trying and hadn't given up so that's a great feeling.
His preschool teacher also notes that other than his speech he seems as normal as any other 2.5 year old she has seen. When we first put him in preschool we weren't sure how it would go I knew how he was at home, when we would go out, and how he was in a structured environment and honestly she and I were both wondering how it would work. I'm thankful for the leaps and bounds he is taking, I don't care how he's done it, I'm just thankful. I'm thankful that he tries to interact with his friends, that he is trying to talk, and that he is making progress. He still has moments when he isn't quite sure what to do but he figures it out.
He's playing peek a boo and he's chasing his sister and loves being chased! His eye contact has increased exponentially. His sleeping is not the greatest but I'll take 80% as a huge step forward. His immune system is still growing and he is no longer breaking out from a cooked egg!!!! So every small step we are making progress!
I found a Klinefelter's support group for kids, it has been so full of useful information. If I were coding his diagnosis the Klinefelter's is most than likely the reason behind his speech delay and is confirmed the reasoning for the low muscle tone and over pronated feet. (We see the orthotics specialist next Thursday to get his feet measured for braces). He still has moments where he doesn't like touch but is more towards a normal two year old in that area.
I don't care if it's a crawl ahead one day at a time, I can see the overwhelming progress he is making, the eye contact and the interaction that at one time none of us knew for sure if it would ever happen! He is making progress and we will keep pushing forward one day at a time!
mommy did have a moment of sadness when I realized just how much he should be saying and doesn't. But I also saw just how much he does do that just a few months back he couldn't/ didn't do. We went to the train museum and he of course loved it. Both kids love trains but Dacotah shakes with excitement over and over again. But guess what he now points and says look!!!!!!!!!! Eeekkkk. Later Saturday evening we went to the Duke vs. Wake Forest game (this was Dacotah's second game). Dacotah did good about 3 minutes into the game but then he wanted to walk and run around the concession stands. I am thankful for his backpack monkey. He stayed outside until the end of the first quarter and his daddy took him inside the Players Lounge so he could run and play while daddy watched the game on the big screen. I offered to switch out at halftime but daddy said they were both comfortable and to enjoy the game with sissy, Ashley, and Caleb outside. If you had told me four years ago I'd love football I would say you were crazy, now I can't wait until Saturday's to watch both TN and Duke play. Unfortunately Wake Forest won and Duke lost. After the game we went inside to visit Uncle Wes and even though it was loud and a lot of strange people Dacotah stayed calm! Another plus. He interacted and played with Caleb when we got back home, they had so much fun and love one another a lot. We left early Sunday to come back before the sun headed West. Dacotah rode the entire five hours back with barely a whimper.
Dacotah had OT and Speech this week. We get to keep his speech therapist Katie (the other one is named Katie also, but he related so well with this one so we requested to keep her even though the first Katie was coming back from maternity leave). Katie is very excited to see him trying to talk more! This week we tried putting him in underwear because he kept taking his pullups off. I came home from work and said "Dacotah do you have paw patrol" he nods his head yes and then gets excited and says "mommy, look"!!!!!!!!!!!!!! He said two words without prompting!!!!!!! I cannot begin to tell you how amazing that is to hear... Oh wait you already know that :) He's trying and hadn't given up so that's a great feeling.
His preschool teacher also notes that other than his speech he seems as normal as any other 2.5 year old she has seen. When we first put him in preschool we weren't sure how it would go I knew how he was at home, when we would go out, and how he was in a structured environment and honestly she and I were both wondering how it would work. I'm thankful for the leaps and bounds he is taking, I don't care how he's done it, I'm just thankful. I'm thankful that he tries to interact with his friends, that he is trying to talk, and that he is making progress. He still has moments when he isn't quite sure what to do but he figures it out.
He's playing peek a boo and he's chasing his sister and loves being chased! His eye contact has increased exponentially. His sleeping is not the greatest but I'll take 80% as a huge step forward. His immune system is still growing and he is no longer breaking out from a cooked egg!!!! So every small step we are making progress!
I found a Klinefelter's support group for kids, it has been so full of useful information. If I were coding his diagnosis the Klinefelter's is most than likely the reason behind his speech delay and is confirmed the reasoning for the low muscle tone and over pronated feet. (We see the orthotics specialist next Thursday to get his feet measured for braces). He still has moments where he doesn't like touch but is more towards a normal two year old in that area.
I don't care if it's a crawl ahead one day at a time, I can see the overwhelming progress he is making, the eye contact and the interaction that at one time none of us knew for sure if it would ever happen! He is making progress and we will keep pushing forward one day at a time!
Friday, September 9, 2016
The past week and a visit to UVA + another week!
The last week has been crazy and busy. Dacotah enjoyed two more days of preschool, and made progress both days. We told him bye on Thursday instead of sneaking out, he looked right at us and matter of factly says "bye". His teacher sent photos and messages on him deciding he would try painting with his classmates but would need his special chair! It is made of wicker and is great for his sensory! He is talking more at home and saying at least 1-2 new words a week! The speech therapist says he is definitely not "severe" anymore.
Sunday we tried going out. He did great in the restaurant, did okay in the car but ran and screamed in the mall. Not sure if it was too much stimulation or what but he was not a happy shopper. He may be 2.5 but let me tell everyone he can destroy a room in five minutes or less. Daddy gets cranky because he never gets to stop picking up. Mommy says forget it until after he goes to bed. Makes clean up easier!
We changed his medicine to a topical that's applied to the bottoms of his feet after he goes to sleep. He is sleeping much better and he is more interactive during the day. On a super positive note, we have confirmed this multiple ways but he is no longer breaking out if we touch him with milk. Life is so much easier! We can skip eggs but milk is on/in absolutely everything. So far with just touch he is no longer breaking out. However, if he eats a bite (we tried under doctors supervision) he still vomits within 2-4 minutes. :( We think as his sleep builds up his immunity will get stronger and he will "outgrow" both. Please keep praying!
As I'm typing this we are on our way to UVA for the dental appointment and the feeding/speech eval. Yep as parents we are both nervous. I will update the post and publish it once we are done.
Okay sorry it's been another week since I started the last post. Life is crazy and super busy. UVA went well, it actually went better than expected. Dacotah does have to have dental surgery but it won't be until November 22! He does not have to have all of his teeth capped in fact only 5-6 are any concern, but this eval was done with four adults holding him down to see what they could see. The dental is caused by his genetic disorder and not lack of dental care (despite not being able to brush) the dentist said Klinefelters have dental issues even with the utmost dental hygiene! *makes me feel like a better mom*
The feeding/speech evaluation went great as well. He is now 9-12months delayed in speech putting his speech at the 18-21 month range!!! Woot woot go Dacotah! The sleep is MAKING A HUGE difference in his alert level and his willingness to talk more!!! We are going to do a follow up with them on Nov 21st just for updated progress.
He has adapted well to preschool and enjoys going. We have had a few tears but his teacher Ms. Monica is fantastic at redirecting and comforting him!!!
This past Monday Physical Therapy came to our house (Pat or Pam, I am horrid with names) said that we need to add PT a minimum of twice a month. She has also advised we consult Orthotics for ankle braces. She was so helpful with providing knowledge to let me know what we could expect with Klinefelters. He walks on the insides of his feet which bow his knees outwards so when he walks it's not like a duck per se but that's how his hips move. As he grows taller super fast it would put more stress on his ankles, knees and hips, so we need to correct the alignment as soon as possible.
The topical Visteril is working great, there isn't any meltdowns on taking medicine orally, and I just attach it to him once he goes to sleep!
This weekend we are going to see Uncle Wes, Aunt Ashley, and cousin Caleb and try doing a football game at Duke. Do I expect he will make it through the game, nope. Thankfully we have access to a calm down room that has the game on a huge tv, should we need it. Let's go Duke!
Sunday we tried going out. He did great in the restaurant, did okay in the car but ran and screamed in the mall. Not sure if it was too much stimulation or what but he was not a happy shopper. He may be 2.5 but let me tell everyone he can destroy a room in five minutes or less. Daddy gets cranky because he never gets to stop picking up. Mommy says forget it until after he goes to bed. Makes clean up easier!
We changed his medicine to a topical that's applied to the bottoms of his feet after he goes to sleep. He is sleeping much better and he is more interactive during the day. On a super positive note, we have confirmed this multiple ways but he is no longer breaking out if we touch him with milk. Life is so much easier! We can skip eggs but milk is on/in absolutely everything. So far with just touch he is no longer breaking out. However, if he eats a bite (we tried under doctors supervision) he still vomits within 2-4 minutes. :( We think as his sleep builds up his immunity will get stronger and he will "outgrow" both. Please keep praying!
As I'm typing this we are on our way to UVA for the dental appointment and the feeding/speech eval. Yep as parents we are both nervous. I will update the post and publish it once we are done.
Okay sorry it's been another week since I started the last post. Life is crazy and super busy. UVA went well, it actually went better than expected. Dacotah does have to have dental surgery but it won't be until November 22! He does not have to have all of his teeth capped in fact only 5-6 are any concern, but this eval was done with four adults holding him down to see what they could see. The dental is caused by his genetic disorder and not lack of dental care (despite not being able to brush) the dentist said Klinefelters have dental issues even with the utmost dental hygiene! *makes me feel like a better mom*
The feeding/speech evaluation went great as well. He is now 9-12months delayed in speech putting his speech at the 18-21 month range!!! Woot woot go Dacotah! The sleep is MAKING A HUGE difference in his alert level and his willingness to talk more!!! We are going to do a follow up with them on Nov 21st just for updated progress.
He has adapted well to preschool and enjoys going. We have had a few tears but his teacher Ms. Monica is fantastic at redirecting and comforting him!!!
This past Monday Physical Therapy came to our house (Pat or Pam, I am horrid with names) said that we need to add PT a minimum of twice a month. She has also advised we consult Orthotics for ankle braces. She was so helpful with providing knowledge to let me know what we could expect with Klinefelters. He walks on the insides of his feet which bow his knees outwards so when he walks it's not like a duck per se but that's how his hips move. As he grows taller super fast it would put more stress on his ankles, knees and hips, so we need to correct the alignment as soon as possible.
The topical Visteril is working great, there isn't any meltdowns on taking medicine orally, and I just attach it to him once he goes to sleep!
This weekend we are going to see Uncle Wes, Aunt Ashley, and cousin Caleb and try doing a football game at Duke. Do I expect he will make it through the game, nope. Thankfully we have access to a calm down room that has the game on a huge tv, should we need it. Let's go Duke!
Tuesday, August 23, 2016
First day of preschool
in an hour and forty-five minutes our baby will be 2.5 years old. He started preschool today and absolutely loved it! I loved that we didn't cry because we knew he was in excellent hands. Big sister Montana is in the same school and I think it made it easier. Of course with her I didn't cry until I took her for her first day of kindergarten even though it was at the same school! He wanted to go play on the playground first thing but he went inside without any fits! He stayed for three hours and when daddy went to pick him up, he didn't want to leave his teacher or his new friends! We got pictures and videos throughout the morning and I know in my heart we picked the right school for him too. I got a message from his teacher saying if she didn't know anything about him she would have only noticed that his speech wasn't super developed! For his daddy and me that's amazing news to hear, as only a month ago he wasn't interacting or wanting to play. The past month has been amazing.
I still believe in prayer and him sleeping has made a huge difference. We are to the point we are trying a topical medicine to prevent the spitting and pinning him down. Since we are only on night 2, we will see how it goes. We tried crushing the chewables up and hiding them in food but with the sensory issues he finds it in everything we have tried so far. But that's okay. His OT has said she can see a night and day difference in the past month in his interaction, he isn't screaming when we are out so long as we let him walk/run when he needs to. He follows sissy everywhere and she's to the point she says "he plays with me mommy"! I'll take the small steps! By the time he is 5, you won't know he's been behind... As we said one step at a time, he's getting there!
He will have a full evaluation to see if he needs and IEP through the public school system in the next 45 days, it will take effect when he turns 3, my hope is he won't need it. I hope when he goes back to see the developmental specialist she says any signs of autism are gone and he's fine in her opinion. Only time will tell. He won't outgrow the Klinefelters that's in his DNA, quite literally. We are seeing some issues from it:
His teeth are rapidly decaying (despite him attempting to brush) Klinefelters causes this
He is very flat footed and OT has suggested we may need to have a PT assessment done to see if he needs braces on his feet. I'm not opposed to it, but I have heard that the braces cause more damage later because it forces the knees and hips out. So we will at least talk to PT and then make a more informed decision.
We leave for UVA next week for his dental work and his feeding/speech evaluation I'm nervous for both, but maybe the dental issues is causing the lack of sleep, but then it could be from the autism or from something else.
Im not going to worry about it, honestly I know where we have been, I see the small steps and in the words of Evan Rasnick "God's Got This"!
I still believe in prayer and him sleeping has made a huge difference. We are to the point we are trying a topical medicine to prevent the spitting and pinning him down. Since we are only on night 2, we will see how it goes. We tried crushing the chewables up and hiding them in food but with the sensory issues he finds it in everything we have tried so far. But that's okay. His OT has said she can see a night and day difference in the past month in his interaction, he isn't screaming when we are out so long as we let him walk/run when he needs to. He follows sissy everywhere and she's to the point she says "he plays with me mommy"! I'll take the small steps! By the time he is 5, you won't know he's been behind... As we said one step at a time, he's getting there!
He will have a full evaluation to see if he needs and IEP through the public school system in the next 45 days, it will take effect when he turns 3, my hope is he won't need it. I hope when he goes back to see the developmental specialist she says any signs of autism are gone and he's fine in her opinion. Only time will tell. He won't outgrow the Klinefelters that's in his DNA, quite literally. We are seeing some issues from it:
His teeth are rapidly decaying (despite him attempting to brush) Klinefelters causes this
He is very flat footed and OT has suggested we may need to have a PT assessment done to see if he needs braces on his feet. I'm not opposed to it, but I have heard that the braces cause more damage later because it forces the knees and hips out. So we will at least talk to PT and then make a more informed decision.
We leave for UVA next week for his dental work and his feeding/speech evaluation I'm nervous for both, but maybe the dental issues is causing the lack of sleep, but then it could be from the autism or from something else.
Im not going to worry about it, honestly I know where we have been, I see the small steps and in the words of Evan Rasnick "God's Got This"!
Monday, August 15, 2016
The changes continue
The past week has been trial and error. We have not found the best way to get the medicine down and Dacotah has learned to spit it back out. *Bummer* so getting a full dose in him is impossible. But thankfully Anderson's Compounding Pharmacy in Bristol can make a chewable tablet of Visteril. (The drug manufacturer discontinued making Visteril years ago because of the cost. But some compounding pharmacies can make a topical and a chewable). The best part is they can flavor it grape like Benadryl and our hope is that he will chew it up and it wont' be a horrendous fight. Worst cause, we can grind it up and put it on an Oreo because the taste shouldn't be a nasty mint. We will know by Wednesday (HOPEFULLY) if it's going to work like we are hoping.
Dacotah continues to amaze us, it's almost like his brain woke up and he's interacting with everyone. Montana is even more open to playing with him whereas before she quickly became bored because he would ignore her. He works board puzzles and chit chats. we still can't understand everything he says but he is getting better. He added "up, down, and more this week alone" and he is starting to put two words together like "where go" for where did it go.
We took him to the preschool orientation at his school to be, and to start with he walked around in circles around the alphabet rug, then he went in and lined Ms. Monica's cars up. Even though there were other kids there he never got upset and just made him a place to play!!!
He had OT with Mel on Thursday and again it was night and day difference, he is using both hands and interacting very well. We were talking how just a month ago we were wondering if we'd ever get him to talk. We are making strides thanks to the sleep issues getting fixed.
We have his dental work scheduled at UVA on the 31st. Montana will be staying with a friend here in town so she doesn't have to miss school. I dread the trip up because he still doesn't travel the greatest but they can get the x-rays, and do everything needed possibly the same day or the next morning. I'd think it'd be the next morning since it'll be general anesthesia but we should be back home that evening. Please pray everything goes well.
The ride to mamaw and papaw's house on Friday was AWFUL.... it wasn't the worst one but I had loaned our van to my dad for his trip out west and so we had the car with three kids in the back and we left heading West... needless to say the SUN was right on him and he fussed and cried every 15-30 minutes until we could distract him with something just long enough to give us a break.... Sunglasses would be awesome right????? I wish he'd leave them on his head, trust me we have tried. He loves spending time with Mamaw and Papaw, and they love having the kids down to visit. As long as the drive is we still try to visit at least once a month.
Saturday he ate next to nothing, we forgot to pack his chicken fries and so we grabbed a bag at Kroger. He wouldn't touch them, Montana wouldn't eat them..... He wouldn't drink anything and didn't want to nurse either. By Sunday he was back to eating everything in sight. Who knows may have been a off day.
Sunday we all went to church, and I decided to let him stay in the sanctuary until it was time for the sermon to start to see how he would do. He walked up and down, drove his car around, laid on the floor, sat on all of us, and listened to the music. He even went up for Children's church to listen to Ms. Wanda's story, all without having a melt down..... IMPRESSIVE.... I took him back to the nursery with Ms. Anne and he did great with her this time too... See sleep helps.
The ride home wasn't as horrible as the way down. In fact it was 85% better. We stopped by Putt Putt to see Aunt Marcia and he threw a fit wanting to go out and play putt putt but the weather wasn't so nice.
We got home and he was ready for bedtime around 8, but as I mentioned earlier he's a spitter when it comes to giving him medicine. So he was waking up every 2-3 hours last night, but stayed in his bed, he would yell Mommy mommy mommy, I'd go lay with him and he would go right back to sleep. I'm debating with his growth spurt and weight increase if I need to make him a heavier blanket. Montana has been begging for her own as well, so maybe that'll be my Christmas gift that is homemade.
Dacotah continues to amaze us, it's almost like his brain woke up and he's interacting with everyone. Montana is even more open to playing with him whereas before she quickly became bored because he would ignore her. He works board puzzles and chit chats. we still can't understand everything he says but he is getting better. He added "up, down, and more this week alone" and he is starting to put two words together like "where go" for where did it go.
We took him to the preschool orientation at his school to be, and to start with he walked around in circles around the alphabet rug, then he went in and lined Ms. Monica's cars up. Even though there were other kids there he never got upset and just made him a place to play!!!
He had OT with Mel on Thursday and again it was night and day difference, he is using both hands and interacting very well. We were talking how just a month ago we were wondering if we'd ever get him to talk. We are making strides thanks to the sleep issues getting fixed.
We have his dental work scheduled at UVA on the 31st. Montana will be staying with a friend here in town so she doesn't have to miss school. I dread the trip up because he still doesn't travel the greatest but they can get the x-rays, and do everything needed possibly the same day or the next morning. I'd think it'd be the next morning since it'll be general anesthesia but we should be back home that evening. Please pray everything goes well.
The ride to mamaw and papaw's house on Friday was AWFUL.... it wasn't the worst one but I had loaned our van to my dad for his trip out west and so we had the car with three kids in the back and we left heading West... needless to say the SUN was right on him and he fussed and cried every 15-30 minutes until we could distract him with something just long enough to give us a break.... Sunglasses would be awesome right????? I wish he'd leave them on his head, trust me we have tried. He loves spending time with Mamaw and Papaw, and they love having the kids down to visit. As long as the drive is we still try to visit at least once a month.
Saturday he ate next to nothing, we forgot to pack his chicken fries and so we grabbed a bag at Kroger. He wouldn't touch them, Montana wouldn't eat them..... He wouldn't drink anything and didn't want to nurse either. By Sunday he was back to eating everything in sight. Who knows may have been a off day.
Sunday we all went to church, and I decided to let him stay in the sanctuary until it was time for the sermon to start to see how he would do. He walked up and down, drove his car around, laid on the floor, sat on all of us, and listened to the music. He even went up for Children's church to listen to Ms. Wanda's story, all without having a melt down..... IMPRESSIVE.... I took him back to the nursery with Ms. Anne and he did great with her this time too... See sleep helps.
The ride home wasn't as horrible as the way down. In fact it was 85% better. We stopped by Putt Putt to see Aunt Marcia and he threw a fit wanting to go out and play putt putt but the weather wasn't so nice.
We got home and he was ready for bedtime around 8, but as I mentioned earlier he's a spitter when it comes to giving him medicine. So he was waking up every 2-3 hours last night, but stayed in his bed, he would yell Mommy mommy mommy, I'd go lay with him and he would go right back to sleep. I'm debating with his growth spurt and weight increase if I need to make him a heavier blanket. Montana has been begging for her own as well, so maybe that'll be my Christmas gift that is homemade.
Sunday, August 7, 2016
Medicine, Sleep, and a night and day difference
So where do I begin? Let's start with a disclaimer: (We have tried everything we could try prior to resorting to prescription medicine. After a length discussion with one of his specialist we decided to give it go and the results are astounding).
I guess I should say I had finally had enough. I was tired of never sleeping through the night. I was tired of the constant whiny, screaming, and fighting. I was tired.... I was exhausted... and quite frankly I mentally got to the point I knew we had to do something. No, I am not selfish, but if you count my pregnancy (the up and down at night to go to the potty) I had not had a full night of sleep in 3 years. I still haven't had a full night but it's 95% better.
I had tried giving Dacotah prescription Hydroxizine (it's like Benadryl but different) I had used it for Montana and her night terrors/nightmares etc, and she still uses it on the rare occasion (she will ask for it) when she can't seem to fall asleep.
I talked to the pharmacists and we had tried a bunch of different flavors. They are all awful tasting and even the chocolate tastes super strong of mint and is disgusting. I tried the easy way of trying to get him to taste it, it doesn't work. So like most things we have to hold him down and forcefully get him to take it.
The first night he slept 5 hours woke up briefly to nurse and slept 3 hours.
Second night around the same thing
Thursday night last week he went to bed around 8:30 slept 7 hours, then got up for the day at 8am. IMAGINE THAT 1 wake up in 11.5 hours...
His naps in the day are longer without any extra medicine. (Here's the awesome kicker, he's prescribed 6ml up to 4x a day. He takes 2-3ml at night only).
Okay so now that I admitted we medicate our kid. Would I change it? No, I would not. You see with the extra sleep he is talking more. He's interacting, he's watching cartoons with his daddy, he's chasing his sister. He's calmer. We made it through Walmart today without a meltdown whatsoever. We went to Putt Putt tonight and stayed for 2 hours and he barely whimpered, even when we were outside with a hundred or more people!!!!
Oh did I mention his OT, Mel, was so amazed at his interaction and eye contact! It's almost as though we have a different kid with nothing wrong with him. It's night and day difference. In the past week, he's started to say the words he lost and appropriately. He worked a board puzzle that before he showed no interest in. We think with the extra sleep and him going to daycare he can make leaps and bounds. Is he talking in sentences? no. Is he saying two words or more? no. But you can see him trying to say new words....Do I think it's going to be a slow process, maybe, but we are making progress. The sleep is helping him stay focused for longer periods of time.
So on a lighter note, the other day Dacotah is in the den and hollers out "Da Dada" Travis said he went to see what he needed because he never says da da, and hadn't in months. He looks in the den and Dacotah is holding something brown in his hand. Travis said he was laughing and gagging so hard trying to get him cleaned back up and his diaper changed. As soon as they were done, Dacotah signed "I love dada, I love mommy" Not only did he sign it, he said it as he signed it.... He hasn't done it again, but he will in his own time.
Sorry, we didn't update sooner, but we were waiting to see if the medicine would work or if it would be good for a few night and he regressed. Thankfully not. The best part is as his body adjusts to sleeping, he should be able to learn to sleep through the night on his own!
I guess I should say I had finally had enough. I was tired of never sleeping through the night. I was tired of the constant whiny, screaming, and fighting. I was tired.... I was exhausted... and quite frankly I mentally got to the point I knew we had to do something. No, I am not selfish, but if you count my pregnancy (the up and down at night to go to the potty) I had not had a full night of sleep in 3 years. I still haven't had a full night but it's 95% better.
I had tried giving Dacotah prescription Hydroxizine (it's like Benadryl but different) I had used it for Montana and her night terrors/nightmares etc, and she still uses it on the rare occasion (she will ask for it) when she can't seem to fall asleep.
I talked to the pharmacists and we had tried a bunch of different flavors. They are all awful tasting and even the chocolate tastes super strong of mint and is disgusting. I tried the easy way of trying to get him to taste it, it doesn't work. So like most things we have to hold him down and forcefully get him to take it.
The first night he slept 5 hours woke up briefly to nurse and slept 3 hours.
Second night around the same thing
Thursday night last week he went to bed around 8:30 slept 7 hours, then got up for the day at 8am. IMAGINE THAT 1 wake up in 11.5 hours...
His naps in the day are longer without any extra medicine. (Here's the awesome kicker, he's prescribed 6ml up to 4x a day. He takes 2-3ml at night only).
Okay so now that I admitted we medicate our kid. Would I change it? No, I would not. You see with the extra sleep he is talking more. He's interacting, he's watching cartoons with his daddy, he's chasing his sister. He's calmer. We made it through Walmart today without a meltdown whatsoever. We went to Putt Putt tonight and stayed for 2 hours and he barely whimpered, even when we were outside with a hundred or more people!!!!
Oh did I mention his OT, Mel, was so amazed at his interaction and eye contact! It's almost as though we have a different kid with nothing wrong with him. It's night and day difference. In the past week, he's started to say the words he lost and appropriately. He worked a board puzzle that before he showed no interest in. We think with the extra sleep and him going to daycare he can make leaps and bounds. Is he talking in sentences? no. Is he saying two words or more? no. But you can see him trying to say new words....Do I think it's going to be a slow process, maybe, but we are making progress. The sleep is helping him stay focused for longer periods of time.
So on a lighter note, the other day Dacotah is in the den and hollers out "Da Dada" Travis said he went to see what he needed because he never says da da, and hadn't in months. He looks in the den and Dacotah is holding something brown in his hand. Travis said he was laughing and gagging so hard trying to get him cleaned back up and his diaper changed. As soon as they were done, Dacotah signed "I love dada, I love mommy" Not only did he sign it, he said it as he signed it.... He hasn't done it again, but he will in his own time.
Sorry, we didn't update sooner, but we were waiting to see if the medicine would work or if it would be good for a few night and he regressed. Thankfully not. The best part is as his body adjusts to sleeping, he should be able to learn to sleep through the night on his own!
Friday, July 29, 2016
29 months and we meet the genetics specialist
To be honest I was going to go back and find my Facebook post but I don't have the brain power to search from my phone. So I'll retype it from memory.
Dacotah is 1 month away from starting preschool at the school where his sister goes. I'm both nervous and excited for him and have already talked to his teacher about his allergies and his basic needs. The biggest thing that will keep him the safest is making sure everyone washes their hands before entering the room.
I'm not 100% sure yet but he seems to be less sensitive to contact to milk. I've reintroduced small amounts of dairy in my diet outside of our house and I'll kiss him when I get home and he's not having lip prints in the form of hives like he once did. I'm paranoid of trying a skin test to confirm because the last time he ended up taking Benadryl for barely touching the tip of a chocolate bar. May be best to try it again when we are home and can keep a close eye on it and see how he does. Another option would be to repeat the blood test with Alcat... Something else insurance won't cover...:(
We debated a lot with Big sister she really wanted to go to public school this year. But honestly I do not like that the schools here only teach SOLs and they don't have textbooks at all in middle school???? We debated with ourselves if it was best to send her anyway or leave her where she's been since she was two and a half. We have compromised that at least one more year so Dacotah has someone at the school that he knows would be best. That way too she would be able to help spot if he needs mommy called in the event of an allergic breakout.
I need to contact the department of social services and see if they provide assistance in tuition for Dacotah since his ISFP states going to daycare/preschool would be a difference. That would help a lot with the cost and maybe he could go more than two days a week. So yeah lots of financial decisions on top of weekly OT and other specialist appointments.
He had an appointment with the ETSU pediatric specialist who confirmed Dacotah does have Klinefelters Syndrome which basically says he has an extra X chromosome in his DNA. Instead of 46 XY he is 47XXY. Klinefelters can cause learning disabilities and 27% of patients have Autism and 68% have or develop ADHD. The specialist made the comment "but he makes great eye contact which isn't autistic, but he doesn't like touch at all which is autistic"... I really wanted to say that's awesome that he does make eye contact and yes it is atypical but it doesn't not rule at autism... As much as I wish it did everything else from the touch, severe sleep disturbance, sensory overload etc confirm his diagnosis. With Klinefelters most men do not know they have it until they are married. They use to believe men with XXY were sterile and couldn't have biological children, thankfully with IVF options this is no longer the case. On a positive boys with Klinefelters tend to be taller, by age 5 he could already be off the growth chart for height!
This isn't a debate about what is or isn't it's just frustrating when I've heard but he's normal, yet again this week from family. NO HE IS NOT NORMAL, normal would be walking, talking, smiling, jumping, laying in the middle of the floor screaming terrible two year old!!!!!!! Normal would be him talking in 2-3 word sentences instead of needing to sign I love you, he would be saying it... So PLEASE FOR MY SANITY stop outwardly telling me he is normal because it sucks having to say "oh he doesn't talk" when you keep telling him to say something over and over expecting to make me look like an idiot...
I have to say the blog keeps me sane, I sometimes hesitate on putting my feelings out there but it helps deal with everything going on. It's easier to go back and say here is what is the same versus different.
OT is coming every week now. But I am getting super frustrated with Speech, the second therapist they assigned was due with her own son six weeks from the day we met her. Which is fine I have no problems with that, but he's not had speech since we came back from vacation. I'm going to find out what's going on there hopefully later today. I also need to get his ISFP with EI changed so they aren't
so focused on his feeding. He had an appointment at UVA for their feeding program in August some time. I don't know yet if we will keep that appointment. He eats other food, granted its chicken and French fries for breakfast lunch and dinner but he's not constantly nursing anymore :) we have gone to Walmart without massive meltdowns but he has to walk and had a habit of running off on the spur of a split second. :( He still isn't talking per se but on several occasions, he looks at us points to something and jabbers... He is getting closer every day and in his own time he will talk our heads off.
After more than 2 years we figured out a way to get his medicine down with him screaming and spitting half of it out but a fraction of the dose has helped him tremendously the last three nights. It may sound mean, disgusting, cruel but with the genetics being different he is not able to sleep on his own without waking every 2 hours all night long. With Doctor prescribed hydroxyzine (an antihistamine like Benadryl) he is sleeping!!!!!!!!!!! We give it to him when he says he is ready to go night night. He will point to the bedroom and say night night (it's not clear but we know what he is asking). I give him his medicine and he's sleeping at least 5-6 hours wakes up once to nurse and sleeps until 7-8am. The last three days he's smiling more and seems to be calmer with less screaming fits.
Update on 7/29 I started writing the top portion two nights ago, and just now got on the desktop so I can finish this post. Today Dacotah said "I love puppy" He signed it as he said it. I was beyond thrilled and the smile on his face let me know he was excited that we understood him. He is smiling so much the past four days, it's great to see him happy and interacting more.
I found out today that he will have speech with Early Intervention three weeks out of the month. The 4th week they will leave open so we can take him to Mini Miracles to have OT and Speech in their facility on the other day of the week. I'll need to set that up soon.
Honestly, this past week has been the most stressful that I have had and I am not sure why. It could be that we have gotten his nursing down to 3 times in a 24 hour period, but whatever is causing the mood swings it can disappear anytime.
Lets wrangle little man to bed thankfully once we get him down he is still sleeping 4-6 hours at a time. Which is amazing compared to every 1-2 all night for 2 years. :)
Dacotah is 1 month away from starting preschool at the school where his sister goes. I'm both nervous and excited for him and have already talked to his teacher about his allergies and his basic needs. The biggest thing that will keep him the safest is making sure everyone washes their hands before entering the room.
I'm not 100% sure yet but he seems to be less sensitive to contact to milk. I've reintroduced small amounts of dairy in my diet outside of our house and I'll kiss him when I get home and he's not having lip prints in the form of hives like he once did. I'm paranoid of trying a skin test to confirm because the last time he ended up taking Benadryl for barely touching the tip of a chocolate bar. May be best to try it again when we are home and can keep a close eye on it and see how he does. Another option would be to repeat the blood test with Alcat... Something else insurance won't cover...:(
We debated a lot with Big sister she really wanted to go to public school this year. But honestly I do not like that the schools here only teach SOLs and they don't have textbooks at all in middle school???? We debated with ourselves if it was best to send her anyway or leave her where she's been since she was two and a half. We have compromised that at least one more year so Dacotah has someone at the school that he knows would be best. That way too she would be able to help spot if he needs mommy called in the event of an allergic breakout.
I need to contact the department of social services and see if they provide assistance in tuition for Dacotah since his ISFP states going to daycare/preschool would be a difference. That would help a lot with the cost and maybe he could go more than two days a week. So yeah lots of financial decisions on top of weekly OT and other specialist appointments.
He had an appointment with the ETSU pediatric specialist who confirmed Dacotah does have Klinefelters Syndrome which basically says he has an extra X chromosome in his DNA. Instead of 46 XY he is 47XXY. Klinefelters can cause learning disabilities and 27% of patients have Autism and 68% have or develop ADHD. The specialist made the comment "but he makes great eye contact which isn't autistic, but he doesn't like touch at all which is autistic"... I really wanted to say that's awesome that he does make eye contact and yes it is atypical but it doesn't not rule at autism... As much as I wish it did everything else from the touch, severe sleep disturbance, sensory overload etc confirm his diagnosis. With Klinefelters most men do not know they have it until they are married. They use to believe men with XXY were sterile and couldn't have biological children, thankfully with IVF options this is no longer the case. On a positive boys with Klinefelters tend to be taller, by age 5 he could already be off the growth chart for height!
This isn't a debate about what is or isn't it's just frustrating when I've heard but he's normal, yet again this week from family. NO HE IS NOT NORMAL, normal would be walking, talking, smiling, jumping, laying in the middle of the floor screaming terrible two year old!!!!!!! Normal would be him talking in 2-3 word sentences instead of needing to sign I love you, he would be saying it... So PLEASE FOR MY SANITY stop outwardly telling me he is normal because it sucks having to say "oh he doesn't talk" when you keep telling him to say something over and over expecting to make me look like an idiot...
I have to say the blog keeps me sane, I sometimes hesitate on putting my feelings out there but it helps deal with everything going on. It's easier to go back and say here is what is the same versus different.
OT is coming every week now. But I am getting super frustrated with Speech, the second therapist they assigned was due with her own son six weeks from the day we met her. Which is fine I have no problems with that, but he's not had speech since we came back from vacation. I'm going to find out what's going on there hopefully later today. I also need to get his ISFP with EI changed so they aren't
so focused on his feeding. He had an appointment at UVA for their feeding program in August some time. I don't know yet if we will keep that appointment. He eats other food, granted its chicken and French fries for breakfast lunch and dinner but he's not constantly nursing anymore :) we have gone to Walmart without massive meltdowns but he has to walk and had a habit of running off on the spur of a split second. :( He still isn't talking per se but on several occasions, he looks at us points to something and jabbers... He is getting closer every day and in his own time he will talk our heads off.
After more than 2 years we figured out a way to get his medicine down with him screaming and spitting half of it out but a fraction of the dose has helped him tremendously the last three nights. It may sound mean, disgusting, cruel but with the genetics being different he is not able to sleep on his own without waking every 2 hours all night long. With Doctor prescribed hydroxyzine (an antihistamine like Benadryl) he is sleeping!!!!!!!!!!! We give it to him when he says he is ready to go night night. He will point to the bedroom and say night night (it's not clear but we know what he is asking). I give him his medicine and he's sleeping at least 5-6 hours wakes up once to nurse and sleeps until 7-8am. The last three days he's smiling more and seems to be calmer with less screaming fits.
Update on 7/29 I started writing the top portion two nights ago, and just now got on the desktop so I can finish this post. Today Dacotah said "I love puppy" He signed it as he said it. I was beyond thrilled and the smile on his face let me know he was excited that we understood him. He is smiling so much the past four days, it's great to see him happy and interacting more.
I found out today that he will have speech with Early Intervention three weeks out of the month. The 4th week they will leave open so we can take him to Mini Miracles to have OT and Speech in their facility on the other day of the week. I'll need to set that up soon.
Honestly, this past week has been the most stressful that I have had and I am not sure why. It could be that we have gotten his nursing down to 3 times in a 24 hour period, but whatever is causing the mood swings it can disappear anytime.
Lets wrangle little man to bed thankfully once we get him down he is still sleeping 4-6 hours at a time. Which is amazing compared to every 1-2 all night for 2 years. :)
Thursday, July 21, 2016
End of vacation
Vacation was nice even though Dacotah slept horrible and by horrible he was waking up every 60-90 min, every single night we were away. The last two nights were the worst when he woke up every 30-60 minutes and had a hard time going back to sleep. Definitely made for some long days.
On Saturday we went to Wilderness with mamaw, papaw, uncle Wes, Aunt Ashley, and cousin Caleb. Dacotah and Caleb got along so well. Caleb is 16 months old and they created their own communication. I loved watching them play and getting along so nice!
The first night at Wilderness Travis and I watched as Dacotah's body language started going downhill, after his nap (laying in Mommy's arms) he was more irritable and we decided to leave the pool area and figure out dinner. As I've mentioned in previous posts I cringe at going out to eat with him, the allergies and the possibility of him going to the hospital is not worth it to me. By the time we got back to the room Dacotah was a screaming mess. So instead of joining everyone else we sent daddy to bring dinner back to the hotel. Dacotah started calming down when I took him out on the hotel deck for some fresh air. We sat in silence and finally he laid down on his stomach and started smiling again. By the time dinner was over he was ready to visit again before going to bed.
Dacotah has his good days and his bad, but his good moments are starting to get a little longer. I think him being able to communicate yes and no has made a HUGE HUGE difference. Now when he points he will say "dis or dat". He's started saying papaw again, beep beep, and his new favorite is bus. Daddy had worked with teaching him to say I love you with their own sign language. Travis will get Dacotah's attention and point to his eye, then his heart, and then to the person or thing. If you sign I love you to Dacotah he giggles and the smile melts the room. So even though he's not talking yet, I know he will.
He is starting preschool in August about a week after his dental work. He is going to have Montana's preschool teacher Mrs. M. I am still nervous but she was amazing with Montana (sissy had separation anxiety). We have gone over what to do when rashes occur and when it's a Epi-pen concern. It's my hope with it only being half days everything is smooth as he will get the interaction with other kids his age (hoping this leads to an explosive language boost) and it keeps him away from food at school.
So as you can imagine with the Austic Disorder we are meeting with other professionals to rule out any other issues. Today I'm taking him to have his hearing checked. We are positive he can hear but we are ruling it out for the speech delay. It's possible he may hear too well. My fear honestly is he won't be still or quiet enough for the ear phones. Fingers crossed he will watch a silent video of himself long enough for an accurate reading.
Dr. Cook had ordered a genetics test on Dacotah. While this is not a debate I will say at this point we are looking for any answer as to why Dacotah has sensory issues. If there are other problems along with ASD we need to know so he can get the best help possible. The results came back while we were on vacation and he has Kleinfelters Syndrome he has an extra X chromosome in one of his DNA strands. I've read what little information is out there and only one symptom currently seems to affect Dacotah and that's the learning delay. Long term I don't know what it means...sooooo he goes Monday morning to see a genetics specialist with ETSU who will be able to tell us more and what we can expect as he gets older.
Eating textured food or new foods as I have mentioned before is an issue. Dr. Cook has set up a feeding evaluation at UVA in Charlottesville. They called Tuesday and set him an appointment for the end of August.
So as you can expect it has been very busy trying to keep all of his appointments in order. I'm hoping by September to repeat the Alcat test to see where his allergies are at that point. Please pray that he can outgrow the big ones like the milk and eggs! I'm still hopeful his immune system will build up immunity after we find a sleep solution.
We start the 1x a week OT today. I haven't heard from speech, I guess that's my biggest issue right now is everyone is focused more on his nursing than on his speech. I had one doctor tell me he'd never sleep through the night as long as he nursed (yet I have a friend who's 4 month old doesn't nurse at night), I think that makes the point that each child's needs are different.
It gets overwhelming at times especially when I want to know what's going on in his world, I want him to talk so much and I know he will in his own time! My prayer is that by the time he is five you'd never know we had any concerns.
On Saturday we went to Wilderness with mamaw, papaw, uncle Wes, Aunt Ashley, and cousin Caleb. Dacotah and Caleb got along so well. Caleb is 16 months old and they created their own communication. I loved watching them play and getting along so nice!
The first night at Wilderness Travis and I watched as Dacotah's body language started going downhill, after his nap (laying in Mommy's arms) he was more irritable and we decided to leave the pool area and figure out dinner. As I've mentioned in previous posts I cringe at going out to eat with him, the allergies and the possibility of him going to the hospital is not worth it to me. By the time we got back to the room Dacotah was a screaming mess. So instead of joining everyone else we sent daddy to bring dinner back to the hotel. Dacotah started calming down when I took him out on the hotel deck for some fresh air. We sat in silence and finally he laid down on his stomach and started smiling again. By the time dinner was over he was ready to visit again before going to bed.
Dacotah has his good days and his bad, but his good moments are starting to get a little longer. I think him being able to communicate yes and no has made a HUGE HUGE difference. Now when he points he will say "dis or dat". He's started saying papaw again, beep beep, and his new favorite is bus. Daddy had worked with teaching him to say I love you with their own sign language. Travis will get Dacotah's attention and point to his eye, then his heart, and then to the person or thing. If you sign I love you to Dacotah he giggles and the smile melts the room. So even though he's not talking yet, I know he will.
He is starting preschool in August about a week after his dental work. He is going to have Montana's preschool teacher Mrs. M. I am still nervous but she was amazing with Montana (sissy had separation anxiety). We have gone over what to do when rashes occur and when it's a Epi-pen concern. It's my hope with it only being half days everything is smooth as he will get the interaction with other kids his age (hoping this leads to an explosive language boost) and it keeps him away from food at school.
So as you can imagine with the Austic Disorder we are meeting with other professionals to rule out any other issues. Today I'm taking him to have his hearing checked. We are positive he can hear but we are ruling it out for the speech delay. It's possible he may hear too well. My fear honestly is he won't be still or quiet enough for the ear phones. Fingers crossed he will watch a silent video of himself long enough for an accurate reading.
Dr. Cook had ordered a genetics test on Dacotah. While this is not a debate I will say at this point we are looking for any answer as to why Dacotah has sensory issues. If there are other problems along with ASD we need to know so he can get the best help possible. The results came back while we were on vacation and he has Kleinfelters Syndrome he has an extra X chromosome in one of his DNA strands. I've read what little information is out there and only one symptom currently seems to affect Dacotah and that's the learning delay. Long term I don't know what it means...sooooo he goes Monday morning to see a genetics specialist with ETSU who will be able to tell us more and what we can expect as he gets older.
Eating textured food or new foods as I have mentioned before is an issue. Dr. Cook has set up a feeding evaluation at UVA in Charlottesville. They called Tuesday and set him an appointment for the end of August.
So as you can expect it has been very busy trying to keep all of his appointments in order. I'm hoping by September to repeat the Alcat test to see where his allergies are at that point. Please pray that he can outgrow the big ones like the milk and eggs! I'm still hopeful his immune system will build up immunity after we find a sleep solution.
We start the 1x a week OT today. I haven't heard from speech, I guess that's my biggest issue right now is everyone is focused more on his nursing than on his speech. I had one doctor tell me he'd never sleep through the night as long as he nursed (yet I have a friend who's 4 month old doesn't nurse at night), I think that makes the point that each child's needs are different.
It gets overwhelming at times especially when I want to know what's going on in his world, I want him to talk so much and I know he will in his own time! My prayer is that by the time he is five you'd never know we had any concerns.
Monday, July 11, 2016
28 months June 28th missing post
This post is out of order and was suppose to show after OT Speech and other updates, on June 28th! I'll attempt to fix it after vacation
After months of little to no major milestones I started looking outside medicine in the sense that most people I know look at it. I have always been told there is always something out there that can help. Someone suggested a hearing test or maybe a pediatric sleep study but both of those were options because of Dacotah's Severe dislike of anything touching him. (My visual was things going flying across the room) ha! So, I called the local acupuncturist and asked if he could see Dacotah to see if the meridians were blocked (if you are unfamiliar Google is a good place to look). I just knew Britt could tell me something. He had me read a couple of pages in a textbook to see if anything fit Dacotah, it really didn't. He checked his pulses and his tongue and said everything looked fine and told me "your son is a puzzle, things seem like they should fit and they don't. There is a shaman (another name for a medicine man) named Phil, call him and see if he can help." We left Britt's office and I never felt more discouraged but also knew I had to keep fighting. If Dacotah has "gifts" that keep him from sleeping, talking or eating, that's fine but I needed to know for sure.
I called Phil and after asking me a couple of questions he says, "I'm sorry but I don't think I could help". My first words were damn it. Why is this so complicated.
Then I remembered about Reiki and how much it had helped me in the past. Googles definition of Reiki
- "a healing technique based on the principle that the therapist can channel energy into the patient by means of touch, to activate the natural healing processes of the patient's body and restore physical and emotional well-being."So I sent a message to Willie and asked if she thought she could help. She agreed to meet up to see if there was anything she could do.I won't go into the logistics because I don't want a huge debate over what is or is not. But I can tell you this! That night was the first night in his life that Dacotah slept through the night!!!! Coincidence? I most certainly think not! I can tell you this I've never been so thankful in all my life.Yesterday Dacotah had very few screaming fits. He rode to the flea market in Wise with no DVD player without screaming! He was shy with people coming up and saying hi, but he was calm! The ride home was uneventful no screaming and no crying.I'll take the change and do so gladly.Dacotah started saying "bus" this past week, now EVERY THING is a bus! We get tickled and have to laugh. Last night we were laying and watching TV and Dacotah threw his tablet in the floor (yep he still loves throwing stuff) I have never seen two adults jump up so fast thinking he had fallen. Lol!We took him to the park before dinner to feed the ducks, he was willing to throw them food, but he wanted them to keep their distance and if not he backed away from them. It was too cute!I'm torn because I feel like we have taken a huge leap in the right direction, but later this morning he will go to the dentist for the first time, and in the afternoon he goes to see the developmental specialist. A week ago I would have been sure there was something underlying, but I have a renewed hope that other than SPD and a touch of OCD he will go on to do great things!
Fall Creek Falls Summer vacation day 1
Dacotah loves the outdoors and water so we decided to start vacation off at Fall Creek Falls in Pikeville Tn. It's a little over an hour drive off the TN 101. We started off with the 1.2 mile hike to the falls. Dacotah walked across the swinging bridge without a second thought while mommy was close behind trying not to freak out! Dacotah walked at least halfway before wanting to be carried. Now being carried wouldn't be a huge deal except he will not let daddy carry him, if Travis gets him he screams nonstop for Mom--------mie Mom----mie yeah you get the point. Over and over and over again even if I am right beside them. Thank God he started letting me carry him in the ergo again about a week ago! He doesn't like being wrapped but he is doing good with the ergo. Sad thing is with his weight I have to get Travis to help get him on my back, it works and I know he's safe, so off we went on up the mountain and the first bridge we came to he wanted down... Then he wanted me to carry him again, then he wanted down at the big turtle rock.... Anyway by the time we got to the falls overlook we were all a tired hot mess, and we forgot the drinks in the cooler in the van so we had a quick snack of chocolate teddy Grahams on the turtle rock. Dacotah took a tumble off the back, but thank God he came away with a tiny scratch! He traveled on back back and fell asleep on the way back to the picnic tables.
He slept on my back while we had turkey sandwiches, chips, and drinks. As soon as he woke up he wanted down again. So we took off to the cascades. You cannot keep this kid off of rock walls or out of water. Honestly there is no point in trying. He fell on his butt in the river, stood up and kept on trucking. Daddy had to come in with his tennis shoes on so we could watch both kids. Montana went down the rock slide, mommy too. Daddy went over to the big hole and did a can opener! On daddy's second try Dacotah counted him down with a one two!!!! Travis jumped in and hit his back on a rock... Dacotah decides he's done enough watching and so we found a small slide for him where daddy caught him at the bottom.
We went back to the calm stream and Montana and me went farther down to the top of the falls. Mommy slipped and fell as did Montana! Dacotah did NOT want to leave the water but when we let him climb the rocks back up the side of the hill he showed no fear and off he went. The doctor said kids with autism loves climbing, definitely fits this kiddo.
The ride back was uneventful but by the last 10-15 minutes he was hollering and wanting unbuckled; by the time we pulled in he couldn't wait to get out of the van.
After dinner grandma and papaw came over, Dacotah saw papaw and for the first time in a couple months he hollered out "Papaw"!!!!! We are over the moon. We all went to the indoor pool and Dacotah swam (I put a hand under him for support and tell him to swim) he uses his arms and kicks his feet and loves it! I really wish UVA@Wise didn't require pool passes for family members of the swim team, else I could take him swimming up there while sissy swims. Oh well we have our outdoor pool until the fall.
He has had a rough night. He's gotten up four times since 10 despite me giving him medicine at 11:30 to help him rest, he is super tired, and is awake as I'm writing this blog... I have a feeling it's going to be a very long night. (Don't worry I have cold coffee and milk in the fridge to get me through the morning lol!
He slept on my back while we had turkey sandwiches, chips, and drinks. As soon as he woke up he wanted down again. So we took off to the cascades. You cannot keep this kid off of rock walls or out of water. Honestly there is no point in trying. He fell on his butt in the river, stood up and kept on trucking. Daddy had to come in with his tennis shoes on so we could watch both kids. Montana went down the rock slide, mommy too. Daddy went over to the big hole and did a can opener! On daddy's second try Dacotah counted him down with a one two!!!! Travis jumped in and hit his back on a rock... Dacotah decides he's done enough watching and so we found a small slide for him where daddy caught him at the bottom.
We went back to the calm stream and Montana and me went farther down to the top of the falls. Mommy slipped and fell as did Montana! Dacotah did NOT want to leave the water but when we let him climb the rocks back up the side of the hill he showed no fear and off he went. The doctor said kids with autism loves climbing, definitely fits this kiddo.
The ride back was uneventful but by the last 10-15 minutes he was hollering and wanting unbuckled; by the time we pulled in he couldn't wait to get out of the van.
After dinner grandma and papaw came over, Dacotah saw papaw and for the first time in a couple months he hollered out "Papaw"!!!!! We are over the moon. We all went to the indoor pool and Dacotah swam (I put a hand under him for support and tell him to swim) he uses his arms and kicks his feet and loves it! I really wish UVA@Wise didn't require pool passes for family members of the swim team, else I could take him swimming up there while sissy swims. Oh well we have our outdoor pool until the fall.
He has had a rough night. He's gotten up four times since 10 despite me giving him medicine at 11:30 to help him rest, he is super tired, and is awake as I'm writing this blog... I have a feeling it's going to be a very long night. (Don't worry I have cold coffee and milk in the fridge to get me through the morning lol!
Sunday, July 10, 2016
And now you know the rest of the story
A voice from Forrest Gump went off in my head as I started writing this "you are a special kind of stupid aren't you" Gump replies "stupid is as stupid does"
No our children are not stupid but they are indeed special. We have always taken a different parenting approach with both of our kids, to outsiders it may look like we never discipline them, but I'm a firm believer in positive reenforcement and redirection. This comes from growing up with a mom who was super loving but was also very abusive. Travis and I decided that I we didn't want that for our kids". Our job is to keep them safe, love them,, shelter them and provide for them. I know we do all of that. Sadly many kids will never have that... Ours don't have to worry we have them and their needs taken care of.
I bring it up only because so many people have said there is nothing wrong with Dacotah, had I listened to the expert parents out there, I would have spanked him senseless for screaming and throwing stuff, I would have said you will sit down at the table and not get up until you puke up the food you can't tolerate to touch little lone taste. For Montana I would have spanked her for failing to tell a neighbor thank you for dinner because she forgot in a rush to get home. Instead she had to walk back over and apologize for forgetting to say thank you and then thank the lady for dinner. Also note she is one who almost always says thank you before I get a reminder out.
But you see it's the things the outsiders don't see that makes me rethink how I teach. I know my kids inside and out, I know that spanking is good for some instances but I also know psychologically there are better ways 90% of the time. Do I spank my kids, sure but it's when it's life threatening. Montana left the house without telling me, Dacotah ran out into the middle of the street, there are times that it is appropriate and the lesson is learned. I say all of this to bring us to the next point: church, yep it's a battleground Dacotah screams and flails his arms, out of exasperation we leave so not to disrupt the pastors teaching. I see the stares and the looks in restaurants when Dacotah has had enough over stimulation and melts down. I see the stares and hear the whispers when I leave everyone at home and have a moment just to be "me" this makes me a better parent it gives me a chance to refuel so I can deal with the constant clinging, screaming, scratching, and meltdowns without losing it... No he's not spoiled... But you see Dacotah has a reason, a medical diagnosis that on the outside you can't see.
Dacotah has autism, to what level we won't know until December, right now he is known as having "borderline autism" The developmental specialist is between mild and moderate autism level 1 or level 2 on the spectrum this the borderline diagnosis. Between the tests she gave last week and Friday's test she said even by the old autism standard before the spectrum came into play he would still be autistic. I was hoping she would say no. So here we are with a diagnosis, a treatment plan, and an ISFP with early intervention that will turn to an IEP when he's 3. Hopefully by the time he is 5, you won't be able to tell he is autistic, that's the long term goal. The short term speech and OT every week until Feb!
How does this change our current home and future. Honestly? I don't know. I'd like to say it's going to continue going just fine with leaps and bounds with both kids. Chances are highly likely that will not be the case but we will grow and adapt and find our normal. The diagnosis does not change how we feel about Dacotah as Travis says "he's our son". That's the truth and we will continue providing and making sure that him and Montana get the best life possible and know they are loved.
No our children are not stupid but they are indeed special. We have always taken a different parenting approach with both of our kids, to outsiders it may look like we never discipline them, but I'm a firm believer in positive reenforcement and redirection. This comes from growing up with a mom who was super loving but was also very abusive. Travis and I decided that I we didn't want that for our kids". Our job is to keep them safe, love them,, shelter them and provide for them. I know we do all of that. Sadly many kids will never have that... Ours don't have to worry we have them and their needs taken care of.
I bring it up only because so many people have said there is nothing wrong with Dacotah, had I listened to the expert parents out there, I would have spanked him senseless for screaming and throwing stuff, I would have said you will sit down at the table and not get up until you puke up the food you can't tolerate to touch little lone taste. For Montana I would have spanked her for failing to tell a neighbor thank you for dinner because she forgot in a rush to get home. Instead she had to walk back over and apologize for forgetting to say thank you and then thank the lady for dinner. Also note she is one who almost always says thank you before I get a reminder out.
But you see it's the things the outsiders don't see that makes me rethink how I teach. I know my kids inside and out, I know that spanking is good for some instances but I also know psychologically there are better ways 90% of the time. Do I spank my kids, sure but it's when it's life threatening. Montana left the house without telling me, Dacotah ran out into the middle of the street, there are times that it is appropriate and the lesson is learned. I say all of this to bring us to the next point: church, yep it's a battleground Dacotah screams and flails his arms, out of exasperation we leave so not to disrupt the pastors teaching. I see the stares and the looks in restaurants when Dacotah has had enough over stimulation and melts down. I see the stares and hear the whispers when I leave everyone at home and have a moment just to be "me" this makes me a better parent it gives me a chance to refuel so I can deal with the constant clinging, screaming, scratching, and meltdowns without losing it... No he's not spoiled... But you see Dacotah has a reason, a medical diagnosis that on the outside you can't see.
Dacotah has autism, to what level we won't know until December, right now he is known as having "borderline autism" The developmental specialist is between mild and moderate autism level 1 or level 2 on the spectrum this the borderline diagnosis. Between the tests she gave last week and Friday's test she said even by the old autism standard before the spectrum came into play he would still be autistic. I was hoping she would say no. So here we are with a diagnosis, a treatment plan, and an ISFP with early intervention that will turn to an IEP when he's 3. Hopefully by the time he is 5, you won't be able to tell he is autistic, that's the long term goal. The short term speech and OT every week until Feb!
How does this change our current home and future. Honestly? I don't know. I'd like to say it's going to continue going just fine with leaps and bounds with both kids. Chances are highly likely that will not be the case but we will grow and adapt and find our normal. The diagnosis does not change how we feel about Dacotah as Travis says "he's our son". That's the truth and we will continue providing and making sure that him and Montana get the best life possible and know they are loved.
Wednesday, July 6, 2016
4th of July
Now most kids I know love fireworks Dacotah loved watching them last year, this year was a little different. Two hours before it was dark we had a really nice storm blow in with a lot of lightening without the booms. He would look out and then go back to what he was doing. Usually with storms he's snuggled up again me or his daddy wondering if the house is going to fall in. (No, I don't know that for sure I can only imagine that's what he thinks)! We had debated going downtown which is all of 3 miles for us, but after big sister decided to go to a friends house after we had told her no, the decision was made we would watch them the best we could from our sunroom. (There is a tree line that about 1 in 10 fireworks makes it above so you can see them. The other nine changes the color of the sky around them which still looks pretty neat and you still hear the boom. Dacotah had me pick him up to walk out on the back porch, one look and he covered his face and pointed to go back inside. Between the colors and the sounds it was too much and he was done for the night. We run a fan and a sound machine in the bedroom which thankfully created enough white noise to drown out the neighbors setting fireworks off to all odd hours of the night.
Dacotah loves the outdoors, not a big deal except in the late evening "no see ums and mosquitos are out 100 fold" which of course leaves his arms and legs covered in big bites. :( but here is the interesting fact: bug bites itch me to death, Dacotah scratches the areas with no bites whatsoever, and the scratching is excessive even in his sleep, despite essential oils and steroid creams.
I would be lying if I didn't say I have had a lot on my mind in the past few days. If you have read my Facebook you would have seen where a family member said some pretty harsh things. I will be honest if it were just an outside family member I would have told them to shut up, but this one struck close to home. My dad is 71 and he had never been one to verbally attack me or say anything offhand to me or the kids. All of that changed when he told me I was wasting my time with speech and OT and nothing was going to change Dacotah. That was his point in a nutshell. I wonder if I heard him wrong, I know I didn't, I wish I had, then maybe it wouldn't have felt like he had slapped me across the face (which he has never done) but his words stung so much I had a very hard time processing it. I guess back when he was growing up there wasn't services widely available and that's what he was referring to, I don't know, quite honestly I don't care. After this post I'll never care to bring it up again, I will talk to my psychologist, process it and be rid of it.
So on to the good news, we had a privacy fence built around the front of our yard last summer as I've mentioned before. Dad came up yesterday evening and braced the door so it now opens and shuts so much easier. Before it would shift and get stuck on the sidewalk and we could barely get it open and shut. The problem has been fixed.
Amazing news: I've been working with Dacotah on signing thank you, and after about a week he had asked for a cookie and out of instinct (I still tell his sister even though she always beats me to it) "Say thank you" and he signed thank you!!!!!! Talk about one super proud mommy and daddy! It's honestly the small things that are the absolute best. I've thought about "baby signing time" and have brought it up on his YouTube he almost instantly loses interest in it. So maybe just one at a time will be good enough. He did notice the PECS cards on the fridge last night as well. It held his attention at least 2-3 minutes (age appropriate) and he pointed to all of the cards and had me say them over and over and over! *fingers crossed* we can start implementing it along with signing.
I'd be lying if I didn't say I was nervous for his appointment on Friday, prayers would be greatly appreciated.
I'm contemplating on trying to find an audiologist to see if they could possibly do a hearing test when he's under general anesthesia in August. I'm not sure how to get that set up so if anyone has experience with it, please feel free to share!
I'm getting a second opinion on his dental work just to make sure it's the best thing to do, putting your kid to sleep is not an easy decision so I want to make sure it's the right call.
I turned in is application for daycare in the fall, it's not so much that I need the daycare as I have a fabulous job that works with his needs and I am very greatful to have. We are sending him a minimum of 2 half days (he won't join his friends for lunch we will pick him up due to allergy concerns) so he can get more socialization with kids his age. We had the option for head start (which is free for kids like him), but I didn't feel it was the "best" option. I like the idea of him being in the same building with friends and church family who are familiar with him and who are willing to meet up to find out what needs to be done in the event of an emergency etc.
He's sleeping 2-4 hours at a stretch on any given night! This is a nice change since he was waking up every 2! Generally he will sleep 3.5-4 hours then wake up every 2.5-3.5 the rest of the night. So far tonight he started out with 3!
Disclaimer: I know I have a lot of grammar and run ons in the blog, please understand this is not suppose to be complete sentences as most are run on thoughts going through my head which causes me to be wide awake in the middle of the night. So I type it all out on my phone so I have notes for updates when he does new things or when I have concerns.
Dacotah loves the outdoors, not a big deal except in the late evening "no see ums and mosquitos are out 100 fold" which of course leaves his arms and legs covered in big bites. :( but here is the interesting fact: bug bites itch me to death, Dacotah scratches the areas with no bites whatsoever, and the scratching is excessive even in his sleep, despite essential oils and steroid creams.
I would be lying if I didn't say I have had a lot on my mind in the past few days. If you have read my Facebook you would have seen where a family member said some pretty harsh things. I will be honest if it were just an outside family member I would have told them to shut up, but this one struck close to home. My dad is 71 and he had never been one to verbally attack me or say anything offhand to me or the kids. All of that changed when he told me I was wasting my time with speech and OT and nothing was going to change Dacotah. That was his point in a nutshell. I wonder if I heard him wrong, I know I didn't, I wish I had, then maybe it wouldn't have felt like he had slapped me across the face (which he has never done) but his words stung so much I had a very hard time processing it. I guess back when he was growing up there wasn't services widely available and that's what he was referring to, I don't know, quite honestly I don't care. After this post I'll never care to bring it up again, I will talk to my psychologist, process it and be rid of it.
So on to the good news, we had a privacy fence built around the front of our yard last summer as I've mentioned before. Dad came up yesterday evening and braced the door so it now opens and shuts so much easier. Before it would shift and get stuck on the sidewalk and we could barely get it open and shut. The problem has been fixed.
Amazing news: I've been working with Dacotah on signing thank you, and after about a week he had asked for a cookie and out of instinct (I still tell his sister even though she always beats me to it) "Say thank you" and he signed thank you!!!!!! Talk about one super proud mommy and daddy! It's honestly the small things that are the absolute best. I've thought about "baby signing time" and have brought it up on his YouTube he almost instantly loses interest in it. So maybe just one at a time will be good enough. He did notice the PECS cards on the fridge last night as well. It held his attention at least 2-3 minutes (age appropriate) and he pointed to all of the cards and had me say them over and over and over! *fingers crossed* we can start implementing it along with signing.
I'd be lying if I didn't say I was nervous for his appointment on Friday, prayers would be greatly appreciated.
I'm contemplating on trying to find an audiologist to see if they could possibly do a hearing test when he's under general anesthesia in August. I'm not sure how to get that set up so if anyone has experience with it, please feel free to share!
I'm getting a second opinion on his dental work just to make sure it's the best thing to do, putting your kid to sleep is not an easy decision so I want to make sure it's the right call.
I turned in is application for daycare in the fall, it's not so much that I need the daycare as I have a fabulous job that works with his needs and I am very greatful to have. We are sending him a minimum of 2 half days (he won't join his friends for lunch we will pick him up due to allergy concerns) so he can get more socialization with kids his age. We had the option for head start (which is free for kids like him), but I didn't feel it was the "best" option. I like the idea of him being in the same building with friends and church family who are familiar with him and who are willing to meet up to find out what needs to be done in the event of an emergency etc.
He's sleeping 2-4 hours at a stretch on any given night! This is a nice change since he was waking up every 2! Generally he will sleep 3.5-4 hours then wake up every 2.5-3.5 the rest of the night. So far tonight he started out with 3!
Disclaimer: I know I have a lot of grammar and run ons in the blog, please understand this is not suppose to be complete sentences as most are run on thoughts going through my head which causes me to be wide awake in the middle of the night. So I type it all out on my phone so I have notes for updates when he does new things or when I have concerns.
Friday, July 1, 2016
Short Update
Not going to go into a lot of detail just yet. But we are having a few other tests done on Dacotah to see what all is going on. His sleep has started to improve with Reiki (A Japanese alternative that involves: a healing technique based on the principle that the therapist can channel energy into the patient by means of touch, to activate the natural healing processes of the patient's body and restore physical and emotional well-being.) His sleep isn't perfect yet but I'll take waking every 3-4 hours over every 2 hours all night. He did have one night where he slept through the night!!! WHICH was a major lifesaver for mommy. It's always fun when you wake up and realize he's not woken up and you shake him and yell at him and he doesn't move, but then takes a big breath as if to say "LEAVE ME ALONE". Talk about a heart attack!
He is starting to babble. We've noticed over the past two weeks he will just jabber up a storm with his sister. We can't understand him, which is so frustrating, but he giggles and laughs with her.
He's started this frustrating thing where he asks for something to eat, beckoning for you to open it, you open it, and he refuses it, and goes and grabs another can of the exact same thing. I'm wondering if he likes the sound or something.
We took him to the dentist on Monday. We knew he had some bad cavities on his front teeth so I was expecting them to need to be filled. With Sensory Processing to the degree which he has, getting anything into his mouth (UNLESS he puts it there) is non-existent. Ask the ladies at the dentist who tried getting an xray film into his mouth. The weighted vest threw him into full on panic mode and he scream and squalled a good 15 minutes. So the dentist comes in and says he'd need crowns on the front (which will be white) and silver on the back teeth. All 16 teeth will be capped to prevent further tooth damage. It is our goal that by the time he is 5 and starts losing his baby teeth that OT and I have made progress and can get his toothbrush in his mouth to take care of them. August 16th, he will undergo general anesthesia at the children's hospital and the dental work will be done. The thought of putting him to sleep is scary but I know he's in good hands as Britt Bowers regularly does it with his special needs kids.
We took him to Dr. Cook Monday afternoon. Again I won't go into detail except to say she wants to see him again next Friday for another test and she ordered some labs on him. Once we have a diagnosis we will share once we have time to process anything that comes from the blood work or additional testing.
OT and Speech has been upgraded to once a week until he is 3 through early learning. At which time it's through the "school system" not sure of all that entails just yet, we will deal with that bridge when we get there.
He is starting to babble. We've noticed over the past two weeks he will just jabber up a storm with his sister. We can't understand him, which is so frustrating, but he giggles and laughs with her.
He's started this frustrating thing where he asks for something to eat, beckoning for you to open it, you open it, and he refuses it, and goes and grabs another can of the exact same thing. I'm wondering if he likes the sound or something.
We took him to the dentist on Monday. We knew he had some bad cavities on his front teeth so I was expecting them to need to be filled. With Sensory Processing to the degree which he has, getting anything into his mouth (UNLESS he puts it there) is non-existent. Ask the ladies at the dentist who tried getting an xray film into his mouth. The weighted vest threw him into full on panic mode and he scream and squalled a good 15 minutes. So the dentist comes in and says he'd need crowns on the front (which will be white) and silver on the back teeth. All 16 teeth will be capped to prevent further tooth damage. It is our goal that by the time he is 5 and starts losing his baby teeth that OT and I have made progress and can get his toothbrush in his mouth to take care of them. August 16th, he will undergo general anesthesia at the children's hospital and the dental work will be done. The thought of putting him to sleep is scary but I know he's in good hands as Britt Bowers regularly does it with his special needs kids.
We took him to Dr. Cook Monday afternoon. Again I won't go into detail except to say she wants to see him again next Friday for another test and she ordered some labs on him. Once we have a diagnosis we will share once we have time to process anything that comes from the blood work or additional testing.
OT and Speech has been upgraded to once a week until he is 3 through early learning. At which time it's through the "school system" not sure of all that entails just yet, we will deal with that bridge when we get there.
Monday, June 20, 2016
OT, Speech, and road trip
Mel came over on Thursday for Dacotah's OT appointment. I went over my concerns and he is definitely self soothing and/or stimming by scratching. The compression shirt online is the only way to know for sure if he will tolerate it. We attempted the rash guard shirts but they were simply too loose. At one point he was shirtless and Mel barely touched him. He moved away and scratched where she had touched excessively. She mentioned to that he is displaying OCD along with sensory, which from what I read go hand in hand. I know everyone says he makes good eye contact and he can listen to any and all directions and do it, so that's the two things that aim away from him being on the spectrum. I still plan to take him to a behavior health specialist and a developmental health specialist. We are still doing heavy work and sensory swings and he doesn't have near the meltdowns at home, or in any environment he feels safe in. However, the resources we use at home doesn't work in town. So after discussing everything, I asked Mel her thoughts on upping OT to once a week. It has to be cleared with the EI coordinator, and it will allow us to have "field trips" out to the Mini Miracles facility in JC (hoping as an outpatient visit). She doesn't think he is quite ready for OT in the grocery store or in a restaurant yet, why for my current sanity level I am thankful we aren't attempting that yet. She mentioned maybe trying to get him into daycare so he can start interacting with kids. Unfortunately this will have to wait until August 24th, when he turns 2 1/2, and here is why.
Side track: I want Dacotah to go to our church daycare: reasons why: the staff there are great with the kids. Big sister started there when she was 2.5 and has learned sooo much. But they are also familiar with food allergies and are located literally 1 min from the hospital, 2 min from home, and 3 min from my work! So in the event of a major meltdown, allergic reaction, or you name it, I know I would have immediate contact with someone. The thought of daycare does scare me, I would love to have field trips to the school on Mondays or Wednesday's prior to him starting, but the mommy instinct wants to find someone to watch him at home during lunch or snack time.... The thoughts aren't of what could happen but when will it happen that someone drops a cupcake on the table he grabs it and we are rushing to the hospital...... Ack!!!! Or someone forgets to wash their hands and he wears a handprint on his arm all day! (This has happened when he was around a year old).....
Okay enough freaking out post!
Friday afternoon Katie came over for speech she got him to say No, so it's not lost! He is still saying mine and after getting him frustrated he finally told her mine. Her main goal is trying to help us cut out nursing completely so we can both sleep. Sleep??? What's that? The weighted blanket helped a lot in the beginning but he's back at every 2 hours from midnight onwards! I am hoping he will have a speech explosion in the next few months, even in the next few days would be even better! In the meantime... While we wait, I am going to make him some PECS cards for him to use along with some more simple signing. This should help down on his frustration and maybe we can build a communication bridge and he can let us know if he is happy, sad, itching, upset, etc! We are also going to try getting his speech to once a week as well. He can do EI until he turns 3, so the more visits he can get the better!
Friday evening we heading to Harriman to see Papaw and grandma, the drive down was a mix of fussing... Content... And screaming. Why??? Because the sun flickering in through his window and from the sun setting in the West shining directly on him...... Virginia has tinting laws for Windows, I need to see if there is a waiver for at least his side of the van that we can darken in and have a paper in the vehicle due to his "needs" I agree with the law that it protects us and law enforcement but no tinted windows doesn't work for sensory kids. At least not mine.I don't know who was more excited to see who Papaw or Dacotah, guess we have to say it's a tie!
On Saturday morning they went to watch a cousins kid play fast pitch softball, daddy went to play in a golf tournament and so I decided to take the kids to Roane County Park. They had a great time, Dacotah tolerated the swings much better than the last time and of course mommy had her camera to grab some really nice shots! Dacotah said Duck, duck, duck, eeee duck!!! Yes he said it in context as there were two ducks by the lake!!!! He heard Montana say it. I am beginning to wonder if she is the missing communication piece as that is two words she has gotten him to say in a week, the first being mine! After the park we made a quick stop into a local shop and then we headed back home.
Sunday morning we went to church and I took Dacotah to the nursery. There is a little boy who is around 3, who has been diagnosed with autism, he rarely makes eye contact and stims by randomly screaming, today he was screaming much louder than normal and I couldn't tell which one was crying. When I went back Dacotah climbed into my lap and would try nursing for comfort every time the little boy would scream. Usually Dacotah doesn't seem to care and continues playing, we went back into the sanctuary as service was over. Despite there being a LoT of people he stayed next to me (granted I was giving him gentle squeezes when I felt him starting to tense up) and he marched right out the door and outside faster than I would have thought. He wanted to play on the swings and swing he did... At least 20 minutes total!!!!! Where did this kid come from, my arm was literally tired from pushing him so long but the weeeeeeee weeeeee weeeeee weeeees made it worth every moment.
We spent the afternoon napping, he fussed a good 10 minutes today hugging him didn't work so I tapped my leg and he finally went to sleep without nursing again. I told Jean later that's the hardest thing I have done is telling him no, but if I am honest I am so over and done with nursing. I have been mentally for the past year but held on hoping he would shift and self wean. So we will eliminate the final daytime nursing for nap over the next week and then go from there. Hopefully by August we will both be nurse free at night as well.
Oh another thing Mel mentioned is his sensory issues seem to come from all sensory areas. The light from the sun/headlights is vision, overstimulation noise from hearing, does not like things or people touching him for touch. Super picky eater for taste.... Nose well I can't say what he smells vs what he doesn't. So we will go with 4 out of 5! Usually you are dealing with 1-2! So that makes Dacotah's case a bit more complicated.
In the morning we will make the long drive home, hoping for a relaxed trip, but with the morning sun you never know
Side track: I want Dacotah to go to our church daycare: reasons why: the staff there are great with the kids. Big sister started there when she was 2.5 and has learned sooo much. But they are also familiar with food allergies and are located literally 1 min from the hospital, 2 min from home, and 3 min from my work! So in the event of a major meltdown, allergic reaction, or you name it, I know I would have immediate contact with someone. The thought of daycare does scare me, I would love to have field trips to the school on Mondays or Wednesday's prior to him starting, but the mommy instinct wants to find someone to watch him at home during lunch or snack time.... The thoughts aren't of what could happen but when will it happen that someone drops a cupcake on the table he grabs it and we are rushing to the hospital...... Ack!!!! Or someone forgets to wash their hands and he wears a handprint on his arm all day! (This has happened when he was around a year old).....
Okay enough freaking out post!
Friday afternoon Katie came over for speech she got him to say No, so it's not lost! He is still saying mine and after getting him frustrated he finally told her mine. Her main goal is trying to help us cut out nursing completely so we can both sleep. Sleep??? What's that? The weighted blanket helped a lot in the beginning but he's back at every 2 hours from midnight onwards! I am hoping he will have a speech explosion in the next few months, even in the next few days would be even better! In the meantime... While we wait, I am going to make him some PECS cards for him to use along with some more simple signing. This should help down on his frustration and maybe we can build a communication bridge and he can let us know if he is happy, sad, itching, upset, etc! We are also going to try getting his speech to once a week as well. He can do EI until he turns 3, so the more visits he can get the better!
Friday evening we heading to Harriman to see Papaw and grandma, the drive down was a mix of fussing... Content... And screaming. Why??? Because the sun flickering in through his window and from the sun setting in the West shining directly on him...... Virginia has tinting laws for Windows, I need to see if there is a waiver for at least his side of the van that we can darken in and have a paper in the vehicle due to his "needs" I agree with the law that it protects us and law enforcement but no tinted windows doesn't work for sensory kids. At least not mine.I don't know who was more excited to see who Papaw or Dacotah, guess we have to say it's a tie!
On Saturday morning they went to watch a cousins kid play fast pitch softball, daddy went to play in a golf tournament and so I decided to take the kids to Roane County Park. They had a great time, Dacotah tolerated the swings much better than the last time and of course mommy had her camera to grab some really nice shots! Dacotah said Duck, duck, duck, eeee duck!!! Yes he said it in context as there were two ducks by the lake!!!! He heard Montana say it. I am beginning to wonder if she is the missing communication piece as that is two words she has gotten him to say in a week, the first being mine! After the park we made a quick stop into a local shop and then we headed back home.
Sunday morning we went to church and I took Dacotah to the nursery. There is a little boy who is around 3, who has been diagnosed with autism, he rarely makes eye contact and stims by randomly screaming, today he was screaming much louder than normal and I couldn't tell which one was crying. When I went back Dacotah climbed into my lap and would try nursing for comfort every time the little boy would scream. Usually Dacotah doesn't seem to care and continues playing, we went back into the sanctuary as service was over. Despite there being a LoT of people he stayed next to me (granted I was giving him gentle squeezes when I felt him starting to tense up) and he marched right out the door and outside faster than I would have thought. He wanted to play on the swings and swing he did... At least 20 minutes total!!!!! Where did this kid come from, my arm was literally tired from pushing him so long but the weeeeeeee weeeeee weeeeee weeeees made it worth every moment.
We spent the afternoon napping, he fussed a good 10 minutes today hugging him didn't work so I tapped my leg and he finally went to sleep without nursing again. I told Jean later that's the hardest thing I have done is telling him no, but if I am honest I am so over and done with nursing. I have been mentally for the past year but held on hoping he would shift and self wean. So we will eliminate the final daytime nursing for nap over the next week and then go from there. Hopefully by August we will both be nurse free at night as well.
Oh another thing Mel mentioned is his sensory issues seem to come from all sensory areas. The light from the sun/headlights is vision, overstimulation noise from hearing, does not like things or people touching him for touch. Super picky eater for taste.... Nose well I can't say what he smells vs what he doesn't. So we will go with 4 out of 5! Usually you are dealing with 1-2! So that makes Dacotah's case a bit more complicated.
In the morning we will make the long drive home, hoping for a relaxed trip, but with the morning sun you never know
Wednesday, June 15, 2016
Notes for mommy
Dacotah scratches a lot! And by a lot I mean he scratches himself over and over and over until he gets rashes and bleed from it. He has done this for as long as I came remember. In fact a few moments ago he started scratching in his sleep and will continue doing so until I repeat several times to stop scratching. In the car, at the pool, outside, and in his sleep.... Is it possibly sensory stimulation?
Head banging, if he isn't scratching he pushes himself into the wall repetively while asleep... Again enough until I pull him back down and wake him just enough for him to "reset" for a lack of better word.
Sleep disturbance and startle reflexes. The hospital where he was born made him stay an extra day because of his startle response! The doctor told me that wasn't normal infant behavior and she wanted to watch him overnight to make sure he was okay. Little did we think then that there was something genetic causing it. Kids with SPD don't sleep well. He hit that on the head, hence why most of my blogging is done in the middle of the night. Granted he is asleep currently as I'm writing this down.
I tried posting a video on Facebook last night he will march around in a circle and clap his hands. It's so cute and I love it but he doesn't jump. He loves however for me to hold him and jump with him!
I called and made his appointment with the specialist and we see her at 1:30 on the 27th! I am not nervous, honestly at this point I would rather know for sure instead of wondering. That's how my mind works! The 27th is going to be a fun day we have to be in JC to see the dentist (for the first time) at 8:30am, so I am hoping he will nap from JC to Kingsport so he's not melting down from just being tired.
He has an OT appointment tomorrow and it will be great going over everything I've come up with over the past two weeks with Mel and get another opinion, guess I'm trying to make sure I'm not just overreacting and making a mountain out of a mole hill, but at the same time I want to make sure that the doctors or I (his primary advocate) don't miss the small things and set him back.
I am still waiting on his hammock, swing, and Lycra sheet, the guy on the phone said someone was supposed to have called and confirmed that I wanted the orange hammock since it's really a peach color. Sooooo I ordered him a royal blue (for Duke!) instead. The guy swears it will be here Thursday. OT is scheduled for 3, so I may go to the post office today and put a hold on tomorrow's mail so I can pick it up and have it ready to use tomorrow afternoon. Guess you could say I want to make sure we know how to use it correctly so he gets the maximum benefit!
Oh and I did locate a link for compression clothes (he despises the weighted vest) that aren't $150 each!!!!! Add a medical word and prices skyrocket. So I did find them for $20. The biggest issue I had trying to locate them was no one had the right size. We looked into rash guard and if it were tight enough on the body it was too small to go over his head! If it fit over his head it was too loose... So the website I shared with Mel allows you to measure your child and have the right shirt sent. Not quite custom fit but pretty darn close!
We tried noise cancelling headphones. They lasted all of..... Wait of it..... 1.25 seconds before they were flung off his head and into the floor while he screamed! We waited until he calmed down and the same thing.... I'm not done, I may attempt headphones with the DVD player in the van (that's been a godsend) he loves watching Bob the Builder and Paw Patrol, so he may wear them so he can hear it, if so maybe just maybe we can use (if I can find some super light weight ones) the noise cancelling for stores. Did I mention HE HATES 100% WITHOUT A DOUBT ANYTHING. TOUCHING. HIS. HEAD....
Head banging, if he isn't scratching he pushes himself into the wall repetively while asleep... Again enough until I pull him back down and wake him just enough for him to "reset" for a lack of better word.
Sleep disturbance and startle reflexes. The hospital where he was born made him stay an extra day because of his startle response! The doctor told me that wasn't normal infant behavior and she wanted to watch him overnight to make sure he was okay. Little did we think then that there was something genetic causing it. Kids with SPD don't sleep well. He hit that on the head, hence why most of my blogging is done in the middle of the night. Granted he is asleep currently as I'm writing this down.
I tried posting a video on Facebook last night he will march around in a circle and clap his hands. It's so cute and I love it but he doesn't jump. He loves however for me to hold him and jump with him!
I called and made his appointment with the specialist and we see her at 1:30 on the 27th! I am not nervous, honestly at this point I would rather know for sure instead of wondering. That's how my mind works! The 27th is going to be a fun day we have to be in JC to see the dentist (for the first time) at 8:30am, so I am hoping he will nap from JC to Kingsport so he's not melting down from just being tired.
He has an OT appointment tomorrow and it will be great going over everything I've come up with over the past two weeks with Mel and get another opinion, guess I'm trying to make sure I'm not just overreacting and making a mountain out of a mole hill, but at the same time I want to make sure that the doctors or I (his primary advocate) don't miss the small things and set him back.
I am still waiting on his hammock, swing, and Lycra sheet, the guy on the phone said someone was supposed to have called and confirmed that I wanted the orange hammock since it's really a peach color. Sooooo I ordered him a royal blue (for Duke!) instead. The guy swears it will be here Thursday. OT is scheduled for 3, so I may go to the post office today and put a hold on tomorrow's mail so I can pick it up and have it ready to use tomorrow afternoon. Guess you could say I want to make sure we know how to use it correctly so he gets the maximum benefit!
Oh and I did locate a link for compression clothes (he despises the weighted vest) that aren't $150 each!!!!! Add a medical word and prices skyrocket. So I did find them for $20. The biggest issue I had trying to locate them was no one had the right size. We looked into rash guard and if it were tight enough on the body it was too small to go over his head! If it fit over his head it was too loose... So the website I shared with Mel allows you to measure your child and have the right shirt sent. Not quite custom fit but pretty darn close!
We tried noise cancelling headphones. They lasted all of..... Wait of it..... 1.25 seconds before they were flung off his head and into the floor while he screamed! We waited until he calmed down and the same thing.... I'm not done, I may attempt headphones with the DVD player in the van (that's been a godsend) he loves watching Bob the Builder and Paw Patrol, so he may wear them so he can hear it, if so maybe just maybe we can use (if I can find some super light weight ones) the noise cancelling for stores. Did I mention HE HATES 100% WITHOUT A DOUBT ANYTHING. TOUCHING. HIS. HEAD....
Saturday, June 11, 2016
Mommy's concerns
So I did a lot of thinking over the past two weeks. A LOT of THINKING and a lot of watching. So finally on Friday at work I brought up the possibility of having Dacotah scheduled to see a behavioral pediatric physician to rule out autism. Call it a gut feeling a hunch.. Crazy thought or what have you. But I have many reasons.
Everyone says he makes great eye contact and he interacts. True, but high functioning autistic kids do both as well.
Everyone says he will keep learning new words: so far for every new word he loses a word. This week he stopped saying no no no and just goes huh uh. A lot!
He doesn't babble: quite honestly looking back over the videos he stopped around 12 months.
He no longer says daddy: he calls us both mommy.
He screams and arches his back to avoid diaper changes or when you attempt to change his clothes. This is not terrible 2s, this is EVERY SINGLE TIME WE CHANGE HIM
M-CHAT-R is an autistic toddler questionnaire that follows up on questions to suggest whether it's toddler normalcy or if it's something to consider. After filling out the report 6months ago and again on Friday the result had no changed and suggested we seek a specialist to rule out ASD.
His attention span with trains is over 5 minutes, and he will play his tablet for a long time we are hoping he will watch enough videos to pick up some signing.
He dislikes humming or singing noises, he hates the vacuum cleaner (despite ours being quieter than most), the radio being on in the car leads to a meltdown. Etc.
He does not and has never slept more than 4 hours at a time before waking up.
Do I feel like a diagnosis is going to solve all our problems at home. No, but by making sure we rule out every possible diagnosis, it allows us to get him the most accurate help so he can advance and continue to make progress. It is my hope to eventually to increase his OT from twice a month to four a month. I don't know if it's possible and we are making progress with what Mel's suggested so far, but in the two weeks since she has been here it feels like he is getting frustrated and melting down a lot more often.
So, I called Bill Côte, NP on Friday and spoke to his nurse, I asked for a referral to their preferred physician for an autism evaluation. There was never a hesitancy in her voice and Bill was standing by her because I heard him talking to her in the background. He gets regular updates on Dacotah's progress and he had concerns at his 18month and 24 month well visit. They are going to send him to see Kristi Cook.
I called the office to make sure she took his insurance and asked the front desk how soon we could get him in once they receive the referral, the lady said it's possible to get him in before the end of the month!
Please understand I have an almost 9 year old, I am not being an over freaked out mommy. I just know that in the sense of normal two year old behavior that Dacotah is not on track, and it's my job as his mommy to figure out how to help him so he can achieve the same milestones as other kids his age.
Everyone says he makes great eye contact and he interacts. True, but high functioning autistic kids do both as well.
Everyone says he will keep learning new words: so far for every new word he loses a word. This week he stopped saying no no no and just goes huh uh. A lot!
He doesn't babble: quite honestly looking back over the videos he stopped around 12 months.
He no longer says daddy: he calls us both mommy.
He screams and arches his back to avoid diaper changes or when you attempt to change his clothes. This is not terrible 2s, this is EVERY SINGLE TIME WE CHANGE HIM
M-CHAT-R is an autistic toddler questionnaire that follows up on questions to suggest whether it's toddler normalcy or if it's something to consider. After filling out the report 6months ago and again on Friday the result had no changed and suggested we seek a specialist to rule out ASD.
His attention span with trains is over 5 minutes, and he will play his tablet for a long time we are hoping he will watch enough videos to pick up some signing.
He dislikes humming or singing noises, he hates the vacuum cleaner (despite ours being quieter than most), the radio being on in the car leads to a meltdown. Etc.
He does not and has never slept more than 4 hours at a time before waking up.
Do I feel like a diagnosis is going to solve all our problems at home. No, but by making sure we rule out every possible diagnosis, it allows us to get him the most accurate help so he can advance and continue to make progress. It is my hope to eventually to increase his OT from twice a month to four a month. I don't know if it's possible and we are making progress with what Mel's suggested so far, but in the two weeks since she has been here it feels like he is getting frustrated and melting down a lot more often.
So, I called Bill Côte, NP on Friday and spoke to his nurse, I asked for a referral to their preferred physician for an autism evaluation. There was never a hesitancy in her voice and Bill was standing by her because I heard him talking to her in the background. He gets regular updates on Dacotah's progress and he had concerns at his 18month and 24 month well visit. They are going to send him to see Kristi Cook.
I called the office to make sure she took his insurance and asked the front desk how soon we could get him in once they receive the referral, the lady said it's possible to get him in before the end of the month!
Please understand I have an almost 9 year old, I am not being an over freaked out mommy. I just know that in the sense of normal two year old behavior that Dacotah is not on track, and it's my job as his mommy to figure out how to help him so he can achieve the same milestones as other kids his age.
Wednesday, June 8, 2016
A couple steps back but a few steps forward
Today has been full of crazy.. As everyone was waiting on me to leave Dacotah ran in circles over and over inside the trampoline outside. I had to do some office supply shopping so dad agreed to watch the kids while we went to Kingsport and Johnson City. Dacotah is usually okay with transferring to dads car, but today was meltdown city. Travis took him over to dads car and Dacotah clung to him screaming, crying inconsolably until they pulled out and got on the main road then he was fine. When we met to pick them back up, dad had gotten Montana an ice cream that she was eating on. Really freaking ice cream, in the same vehicle as her brother, knowing full well he could instantly breakout if she accidentally touches him. When confronted dad just said "she wanted an ice cream ". I wanted to jumped and say yep and Dacotah wants to go to the hospital because of a poorly timed decision. However, I just explained I'm over cautious because I don't want to end up with him in the hospital. Soooo...
The drive home, he wanted to nurse and it wasn't a good time with me being stressed out so I tried keeping him occupied with YouTube videos of model trains. Thankfully for the most part it worked! When we got home he watched his train go in circles. I fixed a thing for Montana and came back inside. While Travis and I were watching a show, Dacotah points to different things and the following conversation took place:
Dis...no...dis...no.... Dis.... No.... Dis...no (he carried the two sided conversation on his own) he goes over to the tricycle and I say "that?" He nods yes and got on!
I'm assuming these are good things but I guess too that I worry that it's not normal. I read a lot about SPD and a lot of the younger kids start running in circles, lose their words, and get frustrated and get violent from it.
He hates having his diaper changed or his clothes changed and has started kicking worse and a couple of times he's started to bite!. On a positive he is using his sippy cup more often with less fuss. I'm hoping this weekend to see if we can start substituting it for nighttime since we found 2-3 that he likes chewing and drinking on.
Oh oh oh... I almost forgot. We got his hammock, swing and Sheet made out of Lycra ordered the other day! Cannot wait to get it here so he can enjoy it!
The drive home, he wanted to nurse and it wasn't a good time with me being stressed out so I tried keeping him occupied with YouTube videos of model trains. Thankfully for the most part it worked! When we got home he watched his train go in circles. I fixed a thing for Montana and came back inside. While Travis and I were watching a show, Dacotah points to different things and the following conversation took place:
Dis...no...dis...no.... Dis.... No.... Dis...no (he carried the two sided conversation on his own) he goes over to the tricycle and I say "that?" He nods yes and got on!
I'm assuming these are good things but I guess too that I worry that it's not normal. I read a lot about SPD and a lot of the younger kids start running in circles, lose their words, and get frustrated and get violent from it.
He hates having his diaper changed or his clothes changed and has started kicking worse and a couple of times he's started to bite!. On a positive he is using his sippy cup more often with less fuss. I'm hoping this weekend to see if we can start substituting it for nighttime since we found 2-3 that he likes chewing and drinking on.
Oh oh oh... I almost forgot. We got his hammock, swing and Sheet made out of Lycra ordered the other day! Cannot wait to get it here so he can enjoy it!
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