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.
Thursday, November 17, 2016
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.
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