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PDD specialist tomorrow


Forum: Children with Special Needs

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  #1  
May 16th, 2010, 07:55 PM
Effervescence's Avatar Platinum Supermommy
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Jonah is finally going to see the PDD specialist from Columbus tomorrow morning. We've been waiting for forever to see this specialist. We're hoping he'll have some insight to the strange behaviors and developmental delays Jonah's been having. Some people who see him say right off the bat "there's no way he has any form of PDD" and others see him and say right off the bat "oh yes, he has some classic characteristics"

I wish I could take video of his unexplainable behaviors to show the specialist, but the coordinator said not to bother, he won't consider any home video. I'm really nervous, but also anxious to see what this specialist has to say.
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  #2  
May 17th, 2010, 06:17 AM
quietsong's Avatar Just Another Slacker Mom
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Good luck today, hon! I know how much you've been waiting for this appointment... I hope you get some answers either way.
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  #3  
May 17th, 2010, 02:22 PM
Effervescence's Avatar Platinum Supermommy
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I don't have the heart or the energy to type everything out again, so here is copied and pasted from what I posted in Jonah's PR:

Jonah was diagnosed with mild classic autism today. His IQ is high (she asked if I wanted to know it, I do not, so she just said it is high) so the specialist feels that with help he can pretty much be like everyone else, but he will have attention and social issues as he gets older.

My heart is broken. We thought we were in the clear from this diagnosis. He was also "diagnosed" with speech apraxia, but the doctor pretty much just put a label on his charts to get him the continued therapy he needs (apraxia, while it isn't 'quite it' is the closest thing to 'being it') I think our coordinator for early interventions was shocked by the diagnosis; she had told me that she didn't feel he was anywhere on the spectrum when we first started mentioning it. But at today's eval, the doctor definitely saw all of the strange behaviors that I was concerned about, and said there is no doubt in her mind. She ordered some genetic testing because I guess some children have chromosomal features that are linked to autism. So we had unexpected bloodwork. I was so embarrassed and felt so guilty for my baby- when they were drawing his blood, I passed out. They had to draw him twice because I was holding him when I passed out and the nurse had to take the needle out, so both his little arms got pricked, and when I came to, he was SO scared and confused. But he was sweet, he tried to give me his lovie to make me feel better LOL I think it was a combintation of not eating a proper breakfast, and the stress of the evaluation, followed by my phobia of needles (which I'm usually okay with now, but I think it just added to everything) I feel fine now and Evie seems to be staying put

I'm just not sure what the next step is. I had a LOT of info handed to me today; it's not quite sinking in yet. I was planning on giving you all a very POSITIVE update on Jonah today. He's come so far; he's saying five words now, and walking like a pro! I am hoping that the orthopedic surgeon will tell us next Monday that he can wear his special shoes during the day and only need the casts at night. His feet are completely where they need to be, so now we are just working on keeping them that way (if we end treatment, they would probably grow right back into being crooked again.) We thought it would be much longer before kicking the casts during the day, so we're really pleased with this progress. We are down from seeing the orthopedic surgeon 1-3 times a week to every three weeks!

So that's the update. Not as happy as I had intended to write, but in all Jonah is doing superbly with all of his treatments and therapy etc
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  #4  
May 17th, 2010, 05:49 PM
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I wanted to say big hugs mama. I know how hard it is to have your child dx with Autism. I remember when Jay was.. Even though I knew going in for the Evaluation Jay had it, it was still like a kick in the gut. There is a alot of resources out there. I would get some books on Autism. I know it helped reading up on it. What you need to do now is grieve. I would find a local support group. A early dx is key and you have that. I can not even begin to describe how far Jay has come in the last 2 years since his dx.. If you ever need to talk feel free to pm me.
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  #5  
May 18th, 2010, 06:04 PM
Effervescence's Avatar Platinum Supermommy
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Thank you so much. It's still not quite sticking yet. To me, Jonah is just Jonah... quirky quiet shy little Jonah, kwim? I just don't want this diagnosis to make him "different" to my close family and friends. I want them to still see quirky quiet shy Jonah and not autism, or autistic Jonah. We're still trying to figure out who to tell what details. Some of my friends started talking about him differently when I even mentioned he was being tested. My sister won't even say the word autism, she says "the big A" in a lowered tone, like she's talking about Voldemort or something. I wish I could make them all see that Jonah hasn't changed a bit, just the help he is receiving will.

He's already come such a long way since starting early interventions and speech therapy, so I know that all of the help we can get for him now will certainly benefit him to no end. I just wish it didn't come with such a strong stereotypical label. The only person who understands that Jonah won't be like Rain Man is my aunt, and I'm not sure that I'm ready to fight that battle with people's views
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  #6  
May 18th, 2010, 06:22 PM
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You are right.. He is the same Jonah before the diagnosis. Just take one day at a time, If you do not feel comfortable telling people just yet then do not. You will have people that will be understanding and some that just will not. I can not even talk to my sister about the stuff related to Autism without her getting off the phone real quick. Surround with people who understand and who are raising children with Autism. I will not lie and say this is going to be easy Journey. Raising a child with Autism has taught me alot. Biggest thing is to cherish every little milestone.
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