Special Needs

We got Autism!

I am so excited!!!

We took M to an autism center to be tested to see if she would qualify for an Autism diagnosis and she does! I didn't really have a doubt but it's so nice to finally have some kind of diagnosis and I am excited to see what doors open in terms of therapy.

We still don't know what M's genetic syndrome she has so I have never felt like I belong in any specific special needs subgroup. When you have a kid with an unknown genetic syndrome there are no specialized support groups, advocacy groups or lecture series where you live.

Going through the report the psychologist gave us, I couldn't belive how many local and national Autsim groups there are. I feel like I just got invited to be in the most popular sorority on campus!

So when your kids got diagnosed with Autism, what resources became available to you? Any recommendations for first steps? The psychologist mentioned we should look into ABA therapy. 

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Re: We got Autism!

  • My ds was 27 months at his diagnosis so we had a lot of help through EI, but one of the first therapies that we did with him was floortime, it was really wonderful for my ds. Now my ds receives OT and ST through the local SD, if you haven't yet, get in touch with your local SD to get your dd evaluated by them to see what services she can qualify for.
  • Yeah for Autism!!!! I am glad the dx opend a lot of doors for you!

    Many corpus callosum disorder parents agree that this dx has increased services exponentially for them. So much for treating the "needs" of the child versus the diagnosis. I guess we can give one point to Autsim Speaks for that....

    WAY 2 Cool 4 School


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  • So glad you got a diagnosis!  We had to wait until DS was around 5 to finally get one!  However, it has yet to open any doors for us.  Very frustrated and don't know who to talk to or where to go.  We tried asking our Pedi but he didn't really lead us anywhere.  DS does get help at school though, which is awesome!
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  • I'm so glad you got a dx to open up more doors for you.  Have you guys done that new genetic test that's out (I know it's kind of controversial and expensive but just curious), the genome sequencing stuff.

    I absolutely love Marley she's too cute!  

    I guess the types of programs are really going to be state specific,  I know a couple people here who were able to get their child with ASD on the medicaid waiver so they have an attendant/respite care/full medicaid, and some states have the HIPP program so if you use the medicaid as secondary you can be reimbursed fro the insurance premiums too, etc.

    GOOD LUCK!! 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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