Moms of kids with SNs and ASDs, please help me sort this out - Mothering Forums
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#1 of 11 Old 05-25-2012, 05:41 PM - Thread Starter
 
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I am not sure exactly what I'm looking for...just some guidance I guess or "hey that sounds like my kid and this is what we did.". DS is four. When he was younger I used to post on the SN boards all the time. Around 18 months it became clear that he had global developmental delays. He has receieved pt since around 2 months (hypotonia), speech since 17 months and OT has been off and on for sensory and fine motor. Before he turned two, he very much appeared to have an ASD. We changed his diet, he went from a 6-9 month level for expressive language skills at 2 years to totally on track or ahead now (still has speech for articulation and motor planning-likely has apraxia though no formal dx). He was progressing so rapidly in his language skills and his sensory needs decreased dramatically with the diet changes as well, and he's always been very social so we had pretty much dismissed ASD as a possibility though it was clear something was amiss developmentally. We saw neurologist, GI dr, genetics, etc with no dx.

Fast forward and despite the fact that the developmental ped who tends to over diagnose told us he does not think he's on the spectrum shortly after his second birthday, I am having some serious doubts. He's an altogether quirky kiddo. He absolutely loves people. He loves to be the center of attention, talks nonstop, loves to tease and engage people and is extremely extroverted. However, he is forever telling people story after story about things that are odd...like obsessively talking about vacuum cleaners or asking if they remember when something happened very obscure and meaningless and things that that person would not remember because they were not present. He will sometimes tell the same story 10 times in a row to the same person and then repeat it to the next person we see in similar fashion. He has had a two year long obsession with being a puppy. Left unchecked, he could do this for 10 hours a day, no joke. Newer obsession is the vacuum. Will turn every toy into a vacuum and do this for hours a day as well. Golf club bag: vacuum. Grill basket: vacuum. Metal pole: vacuum. Remote control car: robot vacuum (roomba). And then of course there is the real vacuum which he tantrums over not getting to use and when given the chance will use as long as we allow. No doubt he could use it for hours. He just has some odd interests/obsessions and repetitive behaviors that have me wondering. He interacts much better with adults and older kids than peers....probably because they're more willing to indulge his desire to have these repetitive conversations.

Anyhow, any feedback would be appreciated. When I bring up an ASD friends and family look at me like I'm crazy and have said as much. Therapists just pretty much shrug their shoulders like they're totally baffled by him and doctors give me different opinions. I will add that part of what sparked this post is his new ped (not dev ped) asked me today at his well child exam if an ASD had been ruled out. It had been on my mind anyhow but it just confirmed in my mind that something is up and I'd like to find out what so we can better help him. Tia!
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#2 of 11 Old 05-25-2012, 05:46 PM - Thread Starter
 
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Just have to add another example of repetition. He's on the porch with DH right now yelling in "hey mom. Let us in. There are seagulls out here.". There are no seagulls here and he says this multiple times every single time he's on the porch. Not sure why or where he heard it.
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#3 of 11 Old 05-26-2012, 02:31 PM
 
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Honestly, I would be tempted to have someone with a fresh set of eyes take another look at him. A lot of what you describe does sound Aspie-ish. I wonder if his trajectory seemed so good that docs assumed he would continue on that track. The stuff you are describing just wouldn't be present yet at 2, but doesn't sound completely typically at 4. And regardless of what your label it, it is likely to cause some social challenges, if it continues. If you can't get a diagnosis, some solid social skills work (Michelle Garcia Winner is one good curriculum) might be a good intervention.

 

I will add, though, that I have had more than one person ask if one of my kids who isn't on the spectrum is. The line between highly introverted and very mild ASD can pretty vague and takes a pretty sophisticated eye to discern.
 

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#4 of 11 Old 05-26-2012, 04:36 PM
 
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#5 of 11 Old 05-26-2012, 04:56 PM - Thread Starter
 
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Thank you. I will check out that curriculum. Where did you find it? Is it something I can do with him myself? The thing about him is he is extremely extroverted which may be what throws people off. I think he's going to struggle socially. Up until recently, I thought it was his lack of language holding him back socially but now I am thinking its more but I don't know quite how to address that piece.

Those of you with kids on the spectrum, how have they done socially? I am sick to my stomach over the thought of him wanting to make friends but not being able to or being picked on greensad.gif.
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#6 of 11 Old 05-26-2012, 05:33 PM
 
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We have done the Michelle Garcia Winner stuff with our therapists, but I think her stuff is online, too. Google her name or "social thinking" and you should find the right things. They talk about "expected" and "unexpected" behaviors and basically teach high-functioning kids explicitly the things that others pick up intuitively. Like it is unexpected to drone on about sprinkler heads or other odd special interests for an extended period of time. Kids who are socially motivated, but not capable can learn this "hidden curriculum" and I think it really improves stuff. She also has special characters ("rock brain" is inflexible, for example) that the kids seem to like.

 

My DS presents pretty differently from yours (he's introverted), but there is overlap in the quirky special interests and perseverative-ness (not a word, but you know what I mean :)). I think he is doing really, really well. He just turned 9 (was diagnosed with Aspergers at 5). He's at his first sleepover birthday party tonight (woo-hoo!) and had all seven of the boys in his class at his birthday party last weekend, which the other kids said was the best party ever. One of them wrote on his card to my son that he was the best friend he could ever have and wrote "Yoda=smart" and "[DS's name]=smarter." I think that is his identity right now -- the kids see him more as smart and less as weird. We are lucky that his special interests have never been really strange (at 4, he was into pirates, which is fairly normal at that age, but he was really, really into it!). Now he is into things like learning facts, so he knows tons about science, geography, and social studies. It's at a level of intensity that is a bit odd, but his peers don't quite see that yet.

 

I suspect middle school will be hard (it was brutal for me and I'm neurotypical!), but he is in a tiny school where social stuff i emphasized and being smart is cool, so I hope it won't be too bad. I remember feeling sad and scared for him when he was first diagnosed, but now I see his future as bright. I worried that he would never have real friends, who never go to his prom, would never get married. Now I think all of those tings will happen. I think good interventions and a clear understanding of his deficits has helped, but I also think his has continued to develop. It's on a slightly different path, but it's not a bad one. I hope that, whatever is going on with your sweet boy, you will feel that way, too.

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#7 of 11 Old 05-27-2012, 10:39 AM
 
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Yeah, definitely have someone else look into this. He certainly sounds aspie-ish to me.


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#8 of 11 Old 05-29-2012, 11:44 AM - Thread Starter
 
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Thanks you all. Christinelin--your reply almost had me in tears. It's so good to hear how well your son has done and to hear you articulate your feelings about his future. It really gives me hope and i really appreciate you taking the time to respond. I actually found a social skills group that is based on the curriculum you suggested so I'm going to give them a call today.
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#9 of 11 Old 06-07-2012, 09:32 PM
 
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What were the diet changes? Or are they detailed in another thread. That sounds like incredible progress.

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#10 of 11 Old 06-08-2012, 04:31 PM - Thread Starter
 
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We follow steps one through three in the Feast Without Yeast book by Dr. Bruce Semon which you can buy on amazon. Basically he's gfcf, plus no vinegar, fermented products, apples, grapes, bananas, malted products, artificial colors/flavors....few other things. It has helped him tremendously.
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#11 of 11 Old 06-09-2012, 06:45 PM
 
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An accurate diagnosis can be a help, and I would never try to dissuade a concerned mama from seeking one. But my experience with YoungSon has been that the specific diagnoses haven't really made much difference. He is 16 now, and we have gone through any number of labels, from mental retardation, through apraxia, selective mutism, severe anxiety disorder, to PDD-NOS or Aspergers. At times, he was quite severely affected. Today, I would say he is probably somewhere on the Autism Spectrum, and clearly has dyslexia. Over the years, his symptoms and quirks have changed, and it is hard to say if any therapy, curriculum, or programs have really helped, or if he was just ready to outgrow that stage at that time anyway.

 

What has worked in my family is to set up his world in a way that he can cope successfully. For example, I homeschooled him when he couldn't handle school - he now attends regular classes at high school, and is doing pretty well. When he was an extremely picky eater, I accommodated him - now he eats a fairly normal diet (still has some texture aversions, but no big deal).  He went through a several year period that he could not handle the supermarket, so I found ways to get the shopping done without him (tricky, as a I am a single mom). Without any particular training or therapy, he has totally outgrown that stage now. I have dozens more examples, but what I am really trying to say is that we just coped with each symptom as it arose. And it didn't have much to do with the diagnosis. We found ways to make life work for him, rather than trying to teach him to fit into typical life expectations. And somehow, he seems to be finding his place in the world. On his own schedule, in his own quirky way.
 


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