Not sure we belong here or not....

iVillage Member
Registered: 03-26-2003
Not sure we belong here or not....
4
Wed, 06-07-2006 - 10:06am

My 2.5 y/o son (my 4th child) is what brings me to this board. He has been diagnosed with mild cerebral palsy, sensory integration dysfunction, trigonocephaly, GERD, hypotonia (not a DX), seizures, colaboma of the eye and chronic cuteness.

His neuro has been telling me for six months now that when he gets closer to 4-5 he thinks we will be discussing the autism spectrum. Last week when we went in he said he's leaning more towards PDD-NOS for my son but still would prefer to wait until he's a little older to be sure since he can change so rapidly at this age. (and with his other diagnoses I'm assuming wondering what is overlapping, etc)

He is very social when it comes to adults and older siblings/kids but not with his peers. He is finally getting to where he will let them come up to him and he will look at what they are doing....just last week he actually played with a girl that came over to us with a sticker book....well okay he actually played with her sticker book while she was holding it but I was excited nonetheless. :) He is speech delayed but not too far off and is extremely intelligent, knows colors, can draw a complete detailed face, etc yet not consistent on any skill. What we did find out in the past month was all the time we thought he was getting skills and checking them off our charts, I realized that he didn't really KNOW the answer...he just memorized the answer. He's what the neuro described as very ROTE. For example, in the office I said "how's that taste" and his answer is always "delicious". He answers appropriately but at inappropriate times...he wasn't even eating anything and he did this when I wasn't even directly asking him...I was saying it to the doc. He also has trouble learning things and then generalizing them...his therapists say A+B=C for you CANNOT change B in any way without throwing him off. He's in OT, PT, ST and DT weekly through EI and has been since 6 mos old.

I've been lurking on this board for a week now trying to learn more about this and trying to do more research on how to better help him learn.....does it sound to anyone here that this may or may not be indeed the right place for us to be? I'm wondering if possibly ABA therapy is something I need to look into...yet I'm not sure even exactly what it is. Any advice is definitely appreciated. I can handle his physical difficulties but when I realized he's having trouble with his mind....its scarey.

Thanks,
Laura

iVillage Member
Registered: 05-16-2006
Tue, 06-13-2006 - 9:31pm
Goto AutismSpeaks.org
iVillage Member
Registered: 03-26-2003
Thu, 06-08-2006 - 10:49am

"his therapists say A+B=C for you CANNOT change B in any way without throwing him off"

Oh yeah....that's my guy.....it even states in his IEP that if there is going to be a change in the day or schedule, the teacher absolutely HAS to sit down and not only warn Vaughn (my son) about the change but give a very clear reason why the change will happen.....routine and predicability is sooooo important for him to keep it together.

I have no idea if your little guy is on the spectrum or not....I just totally can relate to what the therapist said.

You know your son better than anyone.....if you think/know/feel there is something there....search for the answers.

I hope you can come here and share with us and hopefully this journey will not feel so scary.....I know it has helped me to have a place to come and share/scream/cry/laugh/vent/etc.

(SMILE),
Christie

iVillage Member
Registered: 06-25-2003
Wed, 06-07-2006 - 10:19pm

Laura,


Welcome to the board. If you can get any use out of it, you belong!

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-31-2003
Wed, 06-07-2006 - 7:39pm

There is absolutely no way I can diagnose your son, but I will say that a lot of what you describe sounds like my DD Sylvia (4 y.o., PDD-NOS). Like your DS, Sylvia learns things by memorization and by rote. The way we used to describe it to people was like this: imagine you're in China, and you have a Chinese phrasebook. You'd be able to say in Chinese things like "Where is the bathroom?" and "I need a train ticket." BUT you'd have absolutely no idea how to break those sentences down (what's the subject, verb, etc.), how to form your own sentences, and how to respond if someone asked you a question you hadn't memorized the answer to. Does this sound familiar?

As DD has gotten older, her speech has improved SO much. But I think it will always be a little stilted and robotic... She still has to stop and think about the rules for pronouns, verbs etc. before she speaks, and often I'll literally hear her "practicing" -- she'll be in her room, repeating certain sentences over and over to herself: "Look, HE has HIS ball. HE is throwing HIS ball! I am right next to HIM!" Speech therapy has helped tremendously, as has her special preschool class in general. And she does LOVE to learn -- she absorbs like a sponge, so as long as she understands the rule (grammar or otherwise) she can memorize it and use it to figure things out. Like your son, she learned letters, numbers etc. very early -- taught herself numbers at 16 months, taught herself letters at 18 months, is currently teaching herself how to read. And so even though it's challenging that she's learning through memorization rather than by *absorbing* the language the way other kids do, her strong memory has been incredibly helpful in terms of picking up language.

As far as ABA or various other therapies are concerned, that's really a personal decision... Some people are diehard ABA, some are diehard DIR/floortime, and some like to do a combination -- or prefer some other approach altogether. It really depends on your child's personality and YOUR personality, IMO... I really don't think there's a right answer. Definitely keep talking to your child's neuro, read all you can, and definitely keep asking questions here -- everyone is really nice and supportive, and there's just a wealth of information on this board!!!

Hope to see more of you,

Jennifer