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Name: Diana :O)

[ Original Post ]

wow! I've been reading here and can't believe that I didn't find you all before! You all seem so informed and compassionate! :)
I am Diana and my son, Nathan- age 4.5, is suspected to be autistic but we can't get in anywhere to have him tested for another 6 months. We have always known that something was different with him but we just didn't know exactly what. He did see a developmental ped when he was about 2 but at that time he was too young to get a clear picture and he was labled PDDNOS- I know that this is in the autistic spectrum but I really think that we can have a much clearer picture now and the NOS part just really irks me. I know it's trivial but 'not otherwise specified' isn't good enough for me. Why don't they just name it for petes sake! ;)
Anyway, here is a little about my son.
He was born with Craniosynostosis (premature fusion of the plates of the scull) of the right coronal suture (near the temple). He had a section of his scull removed at the age of 8 weeks and wore a corrective helmet for one year after that. He is globally delayed and has been in various therapies since he was 3-4 months old. (GOD BLESS EASTER SEALS!)
Nathan will only eat a few things (mainly peanut butter and chocolate) and I'm sure that that is contributing to his peculiar behaviors like lining things up in a precise order, chewing on and trying to eat non food items (PICA)- having blood work done soon for that, temper tantrums steming from changes in schedule or inability to express himself- he does have some words but finds it hard to bring up the right ones when he needs them (apraxia/dyspraxia), laughing hard at nothing, inability to calm himself, etc. He is fairly social though- that's about the only thing I see that doesn't really fit with classic autism (IMO)

I am now trying to learn everything I possibly can about autism in efforts to help my son as best I can. He was in school until Christmas break but I took him out after learning some disturbing things about his teacher (she put an austic child in time out- in another room w/ her only assistant- for an hour and a half out of a 2 and a half hour day!) so I am now home schooling him until that teacher is replaced -hopefully by the end of the year. If not, I will send him to another school next fall.

Well, I have more messages to read and learning to do here so i will sign off for now but I'm sure I'll be around with many qustions! :)

God Bless you all!
Diana ↓

Name: Donna | Date: Jul 1st, 2006 2:00 AM

I too have the label of pdd-nos for my son, and yet he has qualified for SSI, which helps tremendously as his father does not pay support. No autistic child is consistant across the board, they are as unique as you or I am. They shy away from official labels until six sometimes and that can be good. Although like you I have wanted more defined terms so that I can emotionally prepare for the prognosis. But there's the rub, they really don't always want to jump the gun at this age. Just because he's "pdd-nos" doesn't mean he can't get exactly the services he needs, you just need to know your rights for his IEP etc...weird my son had early closure of the fontanel but no craniostenitosis(sp?) He also had synovitus twice. I have wondered about so many factors that may have caused it....but now that I am moving beyond some of the grief, I am focused more on where to go from here. Keep your chin up. Write me if you like [email protected] ↑

Name: Tashia | Date: Jul 1st, 2006 4:19 AM

I have a 4yr old that is MR/autistic and a 2yr old with PDD. I was upset because even thought I knew what was wrong with my 2yr old the doctors wouldn't say for sure til he was 28mos. He was in some therapys during that year wait but I knew he needed the more. With the PDD lable now he will be able to get all the services his brother does and I'm hoping for all great progress. PDD is an answer and an open door to more for your child and family.
Good luck! ↑

Name: Onlinedizzy | Date: Jul 3rd, 2006 7:51 AM

That's terrible about your son's teacher Dianna.
I was thinking about your son's transition problems and some thingsthat have worked for us have been using a timer for eg when Liam is on the computer he knows it's time to finish when the timer rings(I warn him 5 minutes before it is due) Also something nice for them to move onto., another activity your son might like or a treat. egFinish swing then tickles or lollly or banana.... works reallyd eg watching the video you/ he puts it in the finish box or a photo of the activity goes in the finish box. Schedules made up of photos of what is going to happen in the day so he knows what is going to happen are good too or just make little drawings if you can't do the photos. I have a digital camera and I print photos off the computer to use. Hope some of tis might make life easier. ↑