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| Mon, 07-12-2010 - 11:26am |
I know a few of the ladies here already. Anyway here is our introduction/story:
My almost 4 year old was born with single umblical vessel, and nystagmus. After a few months we learned she was very visually impared and delayed in everything! She began speech at 10 months, also OT, and vision. She is what is called "multi-disabled". Last Sept. she began going to a school for the visually impaired which opened up a whole new world. I began to notice subtle diffrence in her compaired to other children. I listen when the therapist said it was caused by her vision, but deep down I knew it was more, I always knew. From the day she was born I just knew. I was in deniual though. My husband kept saying it was autism I kept saying it wasn';t. When she had new eval.'s at 3 years old they listed her as having an IQ o 70 I was devistated. I still to this day think it was too soon for an IQ test. We can't even get her to do a vision test so to this day we have no idea for sure how much she does see. She has been through a battery of tests in the past 4 months. We're talking genetics, EEG, blood work, and autism screenings. Everything thus far has been ok. We are waiting on the genetic tests still, but we are fairly sure she has chromosome 22 deletion syndrome. Anyway the autism screening came back positive. Right now they have her listed as PDD-NOS, but told us that is likely going to be changed and she'll be moved to a different catagory most likely Aspergers. Did I forget to mention she also has hearing loss? Nellie has faced a lot of challanges in her short life. Anyway I do have a few ?'s. Does anyone else have a multi-disabled child? Right now at school she recieves OT, PT, speech, and vision will they add anymore or should I go back to the school and request more? Has anyone tried to change the diet? She is also very overweight and has severe asthsma. Her weight has jumpped 30 lb's in a year! I have a feeling it's because of her SPD and strange eating habits not really sure. Anyway if you made it this far WTG lol!
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Hi Steph....welcome to the board. Long time no see. How are all the kiddies? Good I hope. While it's sad that you have had to join this board....it is nice to see you here. The ladies on here are a wealth of valuable knowledge. They have helped me so much....from the very first post questioning a dx.....to set backs, celebrations, and all the little things that come up with ASD.
As far as therapy at school....is the ST working on pragmatic language? A lot of kiddo's with ASD have a hard time with social language (pragmatic language). OT is great...as you very well know for the sensory stuff...so keep that up....and lastly is your daughter talking yet? If not they may want to add pictures or an electronic device to help her communicate.
What services she gets really depends on her needs. There is no cookie cutter type therapy for kids with ASD...they are all so unique. What works for one...doesn't always work for another.
Please....if you have any other questions....just ask...and again...welcome.
Jessie mommy to Gabe(5 years ASD/CAS/SID)and baby Zane (1 year old)
Visit my blog
Jessie mommy to Gabe(5 years ASD/CAS/SID)and baby Zane (1 year old)
Visit my blog
Nellie's blog http://nelliesjourney.blogspot.com/
Hi and Welcome!!!
First don't put too much energy into the IQ scores. They are just a snap shot and your dd is still so young. Plus kids like ours will do much better having a non-verbal IQ test being done versus a verbal one like the WISC.
There's the UNIT and others out there that they can do. So don't fret, and don't take that test to heart.
You will love it here because we all "get it"
Lainie