Partial trisomy 16q+
Michael is having problems with his speech. He is almost three and a half. He doesn't talk very well; however he does say some words, but they are very hard to make out. I am around him all the time; therefore I know what he tries to say most of the time. There are times I am frustrated, because I don't know what he says. He is very behind in his motor skills area. He can't do things kids do his age. He is not potty trained. He will not sit for me when I try to explain to him what he needs to do.
His Developmental Delays:
Doctor said that Michael is working at a 21 month old level. He is over three now. Michael throws things, hits, pinches, kicks, tries to bite sometimes. He gets very frustrated. I have a 21-month-old daughter that talks non stop. Michael actually picks things up from her. It's supposed to be the other way around, but she should be learning from him.
Michael over all is a bright little boy. He goes to school everyday and is in OT, PT, and Speech Therapy. He is using is hands to talk. He knows some sign language. Learned from therapy. That helps sometimes. Michael knows where the school takes them to play at the park; therefore when we pass by the park after school sometimes he yells "kids, kids, kids. It is not really that clear but I understand him. He knows where to turn going to his grandma and grandpa's house. When you pass the road he yells " pa pa , pa pa." Sometimes he will cry. I have to tell him we will see grandpa in a few minutes.
So he is very bright. He just can't talk and is slow doing everything else. He has been like this since birth. He didn't crawl till he was 11 1/2 months old, walk: almost 17 months old, sit up without support: 9 - 10 months old. Well, I hope someone can give me some more information on this because I know what he was diagnosed with other than that I know nothing about it...thank you.
Update May 1, 2004
He is almost 5. He will be five on June 7th. He is extremely hyper active. He runs from the time he wakes up in the morning until the time he goes to sleep at night and still doesn't sleep good at night. He is progressing slowly with his delays. He is now saying one to two word phrases, but they are not that clear. I understand him because I am with him all of the time. He is learning to ride his bike with handicap pedals and is doing very well, he can't ride without the pedals though. He has to have something holding his feet in place. He still gets very mean, like pinching and kicking, hitting and throwing things etc. He has been in therapy for two years, he goes to OT, PT and speech therapy. He also is in his second year of preschool. He has not met any of his IEP goals for this year. Recently, he had an 24 hour EEG done in Akron Children's hospital. The doctor said that he found some seizure activity while he was sleeping. They are going to monitor the situation since he does not have grand mal seizures or anything like that. He just wakes up shaking a little at night. He gets very mean with his sister sometimes, he pinches her mostly in the face and I have to constantly watch him. Michael was excepted for disability, SSI a little over a year ago, so that helps get some things that he needs. Today, I was very excited because we took the kids to the movies and we tried once when Michael was little and it didn't work out to well because he was to active and didn't sit to watch the movie. This time we watched scooby doo 2 and he loved it. I had to tell him to sit down once and to be quiet but, other than that he did great. I am so glad,
He had a little wreck on his bike today and scratched up his elbow. He was upset, but not really hurt that bad, just mad because he wrecked. I have been trying to get him into a special needs school because of his needs and I think that he need a little bit of one on one with someone that can help him advance better. Another thing is, I do not want him in a regular school with kids that do not understand his disorder and will make fun of him. I won't let that happen. Michael is a very loving little boy. Says hi to anyone. That is the way he has always been. He gets really frustrated and that is the reason for his bad behavior too. I hope in the future that he will be a lot less frustrated and a lot less mean towards us. I don't know what to really expect for the future. Is he ever going to be able to learn? He picks up and loses skills and picks them up again. I hope that he will know how special that he is, even though he is different. I don't look at him as different because, he is so perfect to me but, others look at him odd sometimes especially if he is in one of his moods. I actually had one lady tell me in a store one time "if that was my little boy, I would get the belt out!" I told her well he is not your little boy and you don't know his problems and she went away. I go through that all of the time and just ignore it now. Other then everything that I have said about Michael, he is doing good and I will keep you updated. I also wanted to mention that he has Partial Trisomy 16 q+. If you could put that on the website. Thanks a lot Karen.
Update May 1, 2006
Michael is 6 1/2 now and will be 7 on the 7th of June. He is in a special needs school right now called Starlight and doing very well. His language is picking up a lot better than before but we still have a hard time understanding him. I understand him a lot better than others because I am around him all of the time. His behavior is getting a lot better some days are better than others. He has been put on Concerta for a while now for ADHD. I think that he is doing so much better with being on this medication, he has really bad days when he isn't taking the medication. He also is on medication at night to help him sleep better.
He is potty trained now, has a few accidents here and there but, most of all during the day he is really good now. He still wears pull-ups at night. He doesn't always wake up to go to the bathroom at night. Maybe once in a blue moon he will tell me in the middle of the night that he has to go. He is still drinking from a sippy cup at night. I put water in it because he has already had enough problems with his teeth rotting. He doesn't drink much of the water anyway , it is more like a comfort thing for him. He thinks that I have to sleep with him. He wakes up at night and yells "mom" until I hear him and I have to go lay with him to get him back to sleep. It gets so tiresome at night but, I have been doing it since he was a baby so I will do it until he don't need me to anymore. I have to lay with him to go to sleep. He has a bedtime routine, goes to the bathroom, brushes his teeth, we read books in his bed and sing four songs before he will go to sleep and then he still lays there and try to jabber your ear off. I have to tell him over and over to go to sleep.
He saw a developmental doctor last March and is due to see him again this Monday the 10th. His doctor said that he is happy to see him progressing because that is great but, he will never progress at the level a kid his age should. He has mild mental retardation from the disorder so what he is able to do in the future is going to be determined as he grows because they know nothing about the disorder. The doctor estimated that when Michael is 18 years old he will be in the mind of almost a 9 year old. That is not a regular 9 year old, that is a 9 year old with severe delays. The doctor said that Michael will probably never live on his own for a very long time if ever.
That is ok with me though, I will take care of him forever if I have to.
He is getting a lot better at stuff, it just will take a long time of showing him this and that to have him catch onto it but, if you don't continuously work with him on it then most likely in a few weeks to a month he will forget what you were working on.
Some things he remembers better than others. Tragic events, he seems to never forget, my dad got hurt over last summer and was life lifted to the hospital and we were there when it happened and Michael talks about it almost every day, how pa pa got hurt and copter came and so on. He has never forgotten a car accident we were in and I got hurt so things like that he tends to hang on to. He cut his ear and had it glued over the summer on his little four wheeler in the woods, he wrecked a power wheels one and it was cut a little bit but enough to get it looked at. He says the woods are bad and they hurt him so he doesn't like the woods anymore. I know I am rambling on so I will get off here. I will update more soon, after his appointment this Monday!