Thursday, January 13, 2011

phew! under control

I feel extremely better today! Moose hasn't thrown up since 3am and is silently napping (as is his little bro). Phew. Squirt had a vaccine today; Moose had some blood drawn (to check his chromosomes, DNA, and to check for Fragile X syndrome). So we had a busy morning but I'm enjoying the last few minutes of a silent nap time (although I can hear some baby cries from my baby as he wakes up).

The worst part about moving is leaving our doctor (not to say I won't miss my friends but they are closer than she will be and I will see them again; although I'll see her once a year at the Applejack Festival at least). She's terrific. I was telling her about reading the ADOS report that I got last night in the mail. There are so many discrepancies from where we live to it saying that Moose has received a diagnosis of ASD already from his school system, to saying he had deficits in the symbolic play portion of ADOS (which they said he did awesome), to saying we discussed therapies and strategies - which we did not. Needless to say I am extremely unhappy with this report - and I'm ok with it diagnosing him with autism disorder; that's not my problem (although with these other problems I question whether I can trust this diagnosis).

However, talking with Dr. B today (our primary pediatrician/OB-GYN who delivered both boys and has seen them basically since then minus our pilgrimage to VA) and she reassured me that I'm not going to screw Moose up and that I'm a good mom. She suggested that we find a primary care pediatrician for the boys in our new hometown (which I'm glad one of my friends' husbands is a doctor who sees little people and I figured the boys will want a guy doctor some day anyway). Then ask him for suggestions on where to go for more specified autistic help, even perhaps getting Moose re-tested (however, I would leave that to a developmental pediatrician to determine). That is my line of defense today.

I spent my nap time/me time trying to figure out health coverage for our boys; Kansas is very confusing trying to find assistance or anything on their website. Luckily this awesome guy at HHS here in Nebraska helped me track down a number to call. I have the information but will wait to fill out all of that information until we move.

THEN I came across this Integrated Behavioral Technologies Inc place. I googled 'em up and found their website. I love that they help train parents to do ABA because then perhaps we wouldn't need an ABA therapist at all (I don't know) and this place seems still pricey but less so than ABA therapy.

I have also been searching for grants, waivers - anything to help pay for this stuff. It seems that I should apply for SSI for my big guy not only for the financial help that will provide (if they determine him to be disabled) but that "label" of disability will open up other places of assistance for him/us.
AND I learned that Big A has known our address for the new place but hasn't told me. I've had so many people ask me and I'm like "I don't know" - grrr lol.

The one thing I wish there was, was a checklist or something for parents of autistic children. Something where you can go down the list and know what to do. Having an autistic child is like having a newborn all over again - no instruction manual. You have to just research (through the millions of piles of information) and figure out what to do by yourself. Maybe that's something I can work on through our journey.

And here are some random pics of my kids playing with Play-doh.

that's all he does is poke at it and tear it apart (and eat it)

he doesn't mush it or anything, but will put it on the lids to be a space ship

no idea but I made those balls for him and he just held them

2 comments:

Kara said...

So glad you are under control! That's wonderful Randi!

proudpatriot07 said...

Oh, and I tagged you in my blog for a Stylish Blogger Award :). So come get it!

Amy Lauren

happy followers