We got diagnosis and family bad news too

iVillage Member
Registered: 11-13-2003
We got diagnosis and family bad news too
9
Tue, 12-26-2006 - 9:41pm

This Christmas is really a sad time for us. I'm just coming out from under my rock to update everyone here.

Our ds is 4 1/2 year old, Liam who thus far has had hypotonia (low tone) and sensory integration dysf. We got his testing done earlier this month and the results mid-Dec. His developmental eval came to the conclusion of PDD-NOS. I was doing okay, really, until I read the report that night. It started out great. Cognitive scores were in the 94th to 97th percentile. Verbal scores were 91st to 95th percentile. *Then* I read the socialization domain was 10th percentile and I began to cry. It was just the huge difference between the skills and the reading it on paper that got me. Then, in one part it says: Liam's presentation is unusual in that he demonstrates very significant and pronounced deficits in the preschool environment. In a one-on-one setting, however, he often demonstrates increased social interaction and communication, although suble weaknesses are still notable. Maybe that is part of why it was so difficult for me to see and figure him out. One good thing is that the teacher and myself independently filled out the Gilliam Asperger's Disorder Scale and came up with almost the same score (that Asperger's is highly probable). So we are seeing the same things and hopefully this will bolster our position with the school district.

My FIL had a bad stroke the day before we received Liam's results. It has been so awful. My dh (undiagnosed Asperger's) has been sobbing many times every day (he works at home). It is so bad. This is his dad's 3rd stroke (the first 2 had hardly an affect on him at all). But now he cannot use his left side and cannot walk. We have visited almost every day.

Then about a week after that my mother calls to tell me she has breast cancer. She sounded upbeat because they found it on a mamagram and it is stage one the size of a pea. But after she saw the oncologist and the surgeon she sounded more worried and there are some unknowns that will remain unknown until a couple days after her lumpectomy in early January. Because she is worried I am worried. But they did catch it early it is just that the type is invasive:(

And I wonder why I am exhausted. We have been walking around the house muttering to ourselves "I hate life". But we did make things good for Liam's Christmas and we went to Christmas children's service and our clergy, Fr. Wes came by on Christmas eve to listen to us and pray. Really, Liam's diagnosis is a positive in the scope of things. Thanks all of you for being here.

Molly

Molly
iVillage Member
Registered: 03-26-2003
Tue, 12-26-2006 - 11:05pm

Molly,

I have been wondering when you would post again and how things are going for you. I am so sorry about your family medical crisis. Is you FIL getting any better yet? I know that is so traumatic for your DH and you.

Seeing the stuff on paper is always really hard for me too. I think that sometimes that is when it really sinks in.

HOWEVER, on a good note those percentages things are really funny and often look worse than what they are. 10th percentile seems really horrible but it isn't as bad as it seems. In fact, my understanding is speech pathologist typically won't addresss language issues unless there are 2 areas that are below the 7th or 8th I believe. And 16th is considered low average.

ALSO, with a guy as bright as Liam and since he shows such good skills in a 1:1 setting it is really plausable that he will quickly learn skills to strengthen those areas. AND you are still catching him young. He has the chance to learn those skills while in preK and Kindie.

It is good that an area or 2 came out lowish so he can access the services he needs particularly when getting ready to transition to kindergarten without a monster fight.

Sending out healing prayers to your whole family.

Renee

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iVillage Member
Registered: 11-13-2003
Wed, 12-27-2006 - 5:51pm

Renee,
You always know just what to say. Thanks for making me feel better about it.

Can you recommend a good educational consultant? I have a couple names but would like more to be sure I get the right one.

Molly

Molly
iVillage Member
Registered: 05-16-2006
Wed, 12-27-2006 - 7:02pm

((((HUGS)))
It sounds like when it rains, it pours. Your son and family wow.
Hang in there and will send prayers your way

Nora

iVillage Member
Registered: 03-26-2003
Wed, 12-27-2006 - 9:32pm

Through Regional center or private? I use a RC ed consultant who is really good. I don't know if he does private.

The therapist we use does ed consulting as well. You could try her. I also do alot of ed consulting type stuff unofficially. I attend meetings with friends and consult for them for free and I also volunteer as a parent surrogate so I get more experience that way. If you want I wouldn't mind doing some consulting for you but I am not an official consultant through RC or anything. My time is a wee bit short as of late but I could set aside some time to help.

Renee

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iVillage Member
Registered: 03-20-2003
Thu, 12-28-2006 - 7:03pm

((((Molly))))


My heart just aches for you.

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iVillage Member
Registered: 06-25-2003
Thu, 12-28-2006 - 7:50pm

(((((((((((Molly))))))))))


OMG! I guess this Christmas will be memorable for all the wrong reasons. I am so sorry to hear about your FIL amd mother.

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 12-22-2003
Thu, 12-28-2006 - 9:27pm

(((((Molly)))))

My apologies for chiming in late...I read your post earlier in the week, and didn't take a chance to respond. I can't imagine what you're going through, and I really don't know what to say-except that I'm sorry, and I'll add you and your family to my prayer list.

Amy

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iVillage Member
Registered: 04-11-2003
Fri, 12-29-2006 - 8:30am

Molly, my prayers are with you and your family. HUGS

Samantha

Samantha
iVillage Member
Registered: 03-26-2003
Fri, 12-29-2006 - 10:26am

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