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"
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