Not suprised to be here

iVillage Member
Registered: 04-19-2006
Not suprised to be here
4
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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iVillage Member
Registered: 11-28-2006
Fri, 07-16-2010 - 1:32am

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

iVillage Member
Registered: 04-19-2006
Tue, 07-13-2010 - 10:14am
Hy there Jessie how didn't I see you as CL here???? OMG Gabe has gotten so big! I actually hung up all my cl hats lately from all the doctors. Between Nellie and the baby we spend our lives at the hospital. The baby has VUR. She is talking now! That's part of the problem with getting her dx right. They have to be very careful since she has had speech since 10 months. They said rarely do they see children who have had speech that long and aren't sure if she'd be speaking now without it. Her reseptive speech is terrible still below 12 months. She does however sing ALOT! She repeats a lot too. She can watch a TV show or hear a song and be able to repeat it word for word though yopu can't understand everything lol. We found out in the past few months she has lost some hearing in the past year 40% in both ears. They think maybe tubes will help but they see no fluid so it's a matter of hope and see. Her sensory issues have gotten worse and I am so glad I faught so she could go to the school she does. I'm looking into getting her into a school with classes for kids with autism for next Sept. since this will be here last year where she is. OMG I am long winded aren't I!
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iVillage Member
Registered: 09-12-2008
Mon, 07-12-2010 - 8:03pm

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)



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Jessie mommy to Gabe(5 years ASD/CAS/SID)and baby Zane (1 year old)



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iVillage Member
Registered: 07-12-2010
Mon, 07-12-2010 - 7:13pm
Hi i have a 3 yr old daughter. She is mildly delayed in some areas. I took her to a neurologist and she has been diagnosed with microdeletion syndrome 16p11.2. The dr wants her evaluated for an asd. My daughter is an overeater and does not know when she is full.