Assessment Monday (finally) - Autism Spectrum Message Board

soozeq · 01-04-2007, 04:42 AM

Hello all

A lot of you have been around here as long as me and you've read our family saga in posts. Well, after nine months of waiting we finally have our developmental asessment on Monday. They will look at everything - language, social, communicatiion, sensory processing and a complete physical exam. For those of you who remember the stress we went through about the head. (for those of you who don't, I can bump the thread.) They are going to do a full examination of the shape and growth of his head, keeping in mind the concerns our OT had about the sutures closing early. They will take blood and perform a CAT scan. This will be done later, at the children's hospital, under sedation if needed (...if?).

I had my phone intake interview yesterday, andf it lasted 2 hours. She listened to everything I had to say, with a suprising amount of respect. We discussed my concerns about food allergies, and thoughts on trying gf/cf. Everything that's been building up in my head for the past year, I was able to voice.

I asked how they would diagnose his sensory processing (I want an SPD dx). The told me they could use the notes and observations from our OT as well as talking to her. That's great, as I have a lot of trust in her.

So, that's where we're at. I update on Monday night.

Suzy

soozeq · 01-05-2007, 05:18 AM

They called me yesterday and tried to move his appt back to the end of the month. I refused to budge and told them they needed to find another solution to their problem because I've waited long enough. They cancelled their staff meeting, and just pushed him back by an hour. I was so proud of myself. If autism has done nothing else for us, it's taught me how to be a fighter!

Suzy

9CatMom · 01-05-2007, 08:02 AM

Good for you, Suzy! Good luck with the assessment.

BetsyAnn · 01-05-2007, 09:38 AM

Ditto to what 9CatMom said.
You go girl!

soozeq · 01-09-2007, 05:09 AM

Hi All:

Not too much to report. Much to my disappiontment, we left with no feedback and another apt on th 30th. It was so hard to make my feet walk out the door with nothing. But, I do feel they are being very thorough, and that's why they want to see him again before we get a dx.

What they did do: They talked to Shane and I for about an hour, did a full physical exam, and ordered an MRI to check out the sutures in the head. (Although she echoed my ped. in that if the sutures closed early, there's not too much we can do now. But, she thinks it's worth finding out.) His head is proportionate to his body, he's just huge (3 yrs, 40 inches, 42 lbs) We discussed the digestion problems. They told me to keep him off dairy and give him 10 ml of Lactilose daily. Then we will chart progress and discuss gluten on the 30th if we're not happy with the results from removing dairy.

It felt so good for Shane and I to let evrything out. We've been waiting and worrying for almost a year to see the child development team. We talked until we couldn't think of any thing else to say. ( As soon as we got home, we realized we forgot to mention his high-pitched defensive shriek - oh, that one is hard to deal with) They asked a lot of relevent questions and I really felt like they were interested in everything we had to say.

Liam was good while we were there. He insisted he was an insect, and when she wanted to see him walk, he would only walk like a bug. During the entire physical exam he kept repeating 'You're a bug!'. He really like the dr and had a complete meltdown when we left. We put him in a wheelchar to ditract him while we waited for our ride, and he had a meltdown when we took him out. After the apt, he absolutely HAD to go to his grammas house, and not home. Maybe because he normally goes there every day after school and we broke his routine today? He's really becoming super routine oriented.

Wow, I said I didn't have much to say, and I've babbled for like 5 paragraphs. I'll update on the 30th. It says right on our apt card that we'll get a dx at that apt. Phew.

Suzy