Need advice as parent of 3 year old w/PDD-NOS/SPS

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EmilesDad
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09 Nov 2012, 8:19 am

I ran a search and while there were topics that touched on my subject, there were none that actually addressed my concerns. I'm hoping the wonderful community here can help. Specifically, I would like the feedback of older people who have a similar diagnosis as my son.

My son, Émile, was diagnosed with mild autism @ 18 months. We immediately got involved with EIP and he has made amazing progress. He's a very happy and affectionate child who is cute as can be to boot. At the 3-year mark, when EIP ended, we had a consultation with his Pediatric Neurologist who agreed he made great strides and changed his diagnosis to PDD-NOS. He attends mainstream preschool every day and is a well liked boy.

He's always had difficulty with language. He can largely make his needs known but has trouble with questions and interactive communication. My wife came across an article on MyAspergersChild which describes my son exactly.

This sentence in particular:

Quote:
Comprehension problems usually improved or responded well to speech therapy so that by the age of four years, many of the kids appeared to be functioning superficially, very well.


-Amazing memory
-Very fond of music
-Much of his language learned from music/shows like SuperWHY, Yo Gabba Gabba, Dora, etc.
-Thrives on routine, any attempts to alter it without preparing him for it, results in tantrum/difficulty
-Is exceptional at math, is only 3 years old but can count to 70 and can say his alphabet backwards without hesitation or pause.
-Is a picky eater
-Distracted easily
-Has trouble with questions like "What did you do at school today?"
-Has trouble with I and you and me.

You get the idea.

His biggest issue right now is what appears to be making up his mind. This often happens when it's time for bed or dropping him off at school. He always likes to have something in his hands, whether it be his plush Ernie doll or a small balloon that we drew a face on. For instance, at night we go through his bedtime routine and when I lay him down and tuck him in, he offers Ernie up to me. I kiss and hug Ernie and give him back but I am offered Ernie again. I ask, "Daddy is going downstairs. Do you want me to take Ernie with me?" He says yes but as I leave, he says he wants Ernie. So I ask "Do you want Ernie to lay in bed with you?" He replies yes and I give him back. Then as I leave he wants me to take Ernie again. It's almost like he doesn't know what he wants but I know he really does, he is just having trouble communicating it. Unfortunately I have no idea how to help him communicate it properly.

This happens at least once a day in some capacity and usually results with him crying because no one knows what he wants. Afterwards I feel drained, exhausted, frustrated, and very, very depressed. I just want to help my son but I don't know how. My wife and I are planning on getting him more speech therapy but I know there's more we can be doing but we don't know where to look.

Does this ring a bell with anyone? If so, have you found a way to manage it? To those who have Semantic Pragmatic Language Disorder, do you have any tips/advice on help in this area? How have you managed it while growing up? Is there any advice you can offer a parent to help his son?

Thanks for your time.



Ettina
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09 Nov 2012, 12:02 pm

Is he getting speech therapy? That could be a big help with this kind of thing.

Some thoughts (based on what I've heard/noticed helping kids with communication issues):

Picture schedules to tell him what's going to happen. Especially if you're planning a change in routine, making up a picture schedule for the new event can help. A lot of kids on the spectrum are visual thinkers, so having it in a visual format makes it more clear to them.

Simple statements - I knew one kid who, if you said 'do this', he could imitate your action (this was in an ABA program) but if you said 'OK, J, can you copy what I do, please?' he wouldn't respond. Too many words confused him and he'd have no clue what you wanted from him.

Reading - some autism spectrum kids are early readers and many of these kids benefit from written instructions (again, a visual mode). A kid who shows interest in the alphabet, like your kid, might be ready to learn to read even if they're quite young. Even if you want to introduce him to a few single written words, that might help him get it.

Dealing with auditory processing issues. If he has more trouble understanding people in noisy environments, try getting close and making sure he can see your face (some kids with language disabilities will read lips, kind of like a deaf person). And reduce background noise when you need to tell him something.

I don't know if any of those suggestions will help in your particular case, but I know each of them has been helpful for other kids.



EmilesDad
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12 Nov 2012, 9:19 am

Part of his EIP was speech therapy, which he received twice a week until EIP ended at 3 years old. We plan on seeking more speech therapy now.

I like your idea of pictures.

My son seems okay with picking out essential commands from a sentence. For instance, if I said, "Emile, can you please put the napkin on the table in the dining room?" he would do the action as if I said, "Put napkin on table."

He is definitely not able to read at this point. To an outside observer he might appear able to read but it's usually because it's a favorite book and he's memorized the words from me or Mommy reading it to him.

He is able to spell words. Most likely from memorization as opposed to understanding the letters that make up a word. He can spell share, more, cat, hat, his own name, baby, mommy, daddy, etc. He does know the sounds letters make. Right now I'm working on getting him to understand what letters words start and end with.

My biggest concern right now, and it happened again this morning, is his issue with semantic pragmatic speech.

I dropped him off at preschool. He had his Geo Umizoomi doll with him. We took off his coat and hat, put it in his cubby, and spent a few minutes talking. Well, me talking to him, he just nodding his head or offering yes/no answers. He's very crabby in the morning.

When I said I had to leave for work, he offered his Geo doll to me to take. I took the doll and as I was leaving he said he wanted it back. As I gave it back, he said, "Bye Geo" (when he says bye to things it usually means he doesn't want it). So I took the doll and went to leave but he asked for Geo back again.

I got down to his level and told him to look at me. Then I calmly explained that either Geo stays or comes with me. He nods his head as if he understands but the whole scene plays out all over again until one of the teachers can come over and hold him while I leave. He has a meltdown and I leave frustrated and depressed.

No one has been able to explain why he does this and how to alleviate this issue.