The Hardest Thing To Write About — my son’s initial autism diagnosis &late regression

(originally written & published on February 20, 2012)

Ok, so this is probably going to be the hardest blog post for me to write so far.  And I have no idea where it’s gonna lead so bear with me if I go off on tangents. I’m gonna be remembering things that I haven’t thought about in awhile so it could get messy.

But here goes…

I’ve written in a few previous posts about the king’s mysterious late regression.   If you haven’t read about it before I STRONGLY RECOMMEND that you do before continuing this post.   You can read it HERE

We will wait for you…

🙂

Ok, did you read it?  Great welcome back and away we go…

Even though I covered a lot in that post many people have asked more about it. They want more details. They want to know if we know what caused it. Was there any early warning signs?

People on this blog also always want to know the details of my son’s diagnosis. It seems like you can’t have an autism blog without at least one post (usually the first post) detailing the story of your kid’s diagnosis and how you dealt with it, etc.

The story of his diagnosis isn’t really that interesting. And the story of his late regression is very painful.  And i never wanted my page or blog to dive into all that.  I’ve spent years learning to deal with it. So I don’t want to relive it too often.
But for the good of all of you, I’ll get into it a little bit more. But I’ll say up front that I still have NO F$&KING IDEA what caused his late HUGE regression.

Ok, here goes…

We have a good friend who has 2 sons with autism and she was dropping subtle hints about the king maybe being on the spectrum as early as 12 months. Flapping, walking on his toes, etc.   We thought she was CRAZY.

I covered it in the other post but basically my son was diagnosed pretty early… at about 18 months with mild PDD-NOS.  We got into the Early Intervention program.  And we were able to get a plethora of services.

At least in NY when you are in EI and CPSE you can get alot of services. Then when you get to be 1st grade age you enter the CSE system and they start tightening their purse strings.

But anyway between the ages of 18 months and 36 months he was getting a TON of services!  Our house was a revolving door of speech therapists, OT’s, PT’s and ABA therapists. We added it all up and on most weeks he worked more and worked harder than me!  35-40 hours per week.

And we had these AMAZING women in our lives. And the kid was THRIVING!  Within weeks of showing up at our house his attention span had grown by leaps & bounds.

The first speech session she couldn’t get him to sit still for more that 2 minutes. Within a few months he would sit for the ENTIRE 45 minute session. And he knew the routine of which games went with what book and what song she would sing when she brought out that toy. Thinking back it was AMAZING!

Some family members would say “he’s working too hard.  you have to give him time to be a kid” and we would say “everyone says the more the better, the earlier the better”
As I said in the other post he was learning his numbers, letters, and had  an amazing memory. You would show him which states were which on a big US map like 5 times and he had it memorized.

His point was good. His receptive language was good. We would carry blocks and books with us everywhere and would sit on the floor anywhere we went and imitate one of his therapy sessions and he would LOVE it. He enjoyed learning and he liked to show off his knowledge.

That was key thinking back.  He enjoyed learning.  And as parents that is HUGE.  Because if your kid shows a glimmer of interest in learning it makes it SO much easier to “work” with him on your own.

When you get something back from your kid when you use a particular teaching method (ABA, Pecs, etc), even if it’s just a glimmer of something, an iota of something it makes you want to work with him on your own outside of the “school day”.

We haven’t seen that from him in a LONG time. He doesn’t enjoy learning anymore. With mom & dad he gets stressed when you ask him the simplest question like “point to nose”

Anyway, back to how great he was doing…

He was doing so well and was so good and calm behaviorally that I remember thinking and maybe even saying to the wife that besides the fact that he can’t talk and a few stims, he’s pretty much got it going on. I had visions of grandeur of  him maybe going to an integrated kindergarten in a few years.

I just now remembered that even his stims were different and more high functioning(?)  One of his biggest stims when he was younger was spinning EVERYTHING.  You know the way you twirl a coin. My son could do that with anything….which means his fine motor was much better. I forgot about that.

And he was using a spoon and fork MUCH better back then. I forgot about that…
🙁
(see this is why I don’t write about this)

Anyway he was thriving between 18 months and 36 months and thinking back me & the wife felt like we were doing everything right.  We were “hot shit”. We advocated for our kid and got him what he needed and he was progressing nicely.  And maybe we were a wee but judgmental in our minds.

We would see other ASD kids out always with headphones on watching dvds or listening to music and zoning out and we would frown at each other and say “not our kid”.

We would see other ASD kids who didn’t sit at the table for meals at big house parties and were left on their own in the other room to watch tv. And we would say “we want him to interact with everyone” and there the kid would sit (strapped in most of the time) and he would eat with the adults and we would show off his skills. “point to 40”. “point to Florida” and he was an angel.

This is why I’m so ok with people on my page & blog thinking their way is the best way. We were there too. Our way was the best way too…until it wasn’t anymore…

Slowly between the ages of 3 & 5 it slowly all went away.

His age 3-4 school year (what would that be pre-pre school?) we fought to get him into this amazing ABA school. And it was a great school and the staff were amazing. And the parent training sessions were helpful but slowly our son was slipping away.

We always say that he was getting burnt out on ABA.  But now thinking back i don’t think at all that the ABA burn out caused his regression.  Maybe he regressed and was upset because he couldn’t do it anymore?  Who knows?

All we know is he  was miserable there. He would cry a lot. By January of that school year he was so upset all the time and i guess upsetting the other children that they had taken him out of the classroom setting and he was getting his ABA trials one on one in one of the basement offices.

And that seemed ridiculous so we left that school with our tail between our legs and went to more of a TEACHH school for his age 4-5 year…

But it didn’t matter. The HUGE SLOW regression was happening. And by the time he was 4 1/2-5 years old our good receptive language, pre-speaker, who knew all his numbers, shapes, colors, and states who could use a fork and sit for a meal or sit on the living room floor with me and play with puzzles for 15+ minutes straight was gone…

And in his place we had our severely classically autistic son that can barely sit still, climbs on everything, plays with his saliva, has a low attention span, and hasn’t made any significant forward progress in years

Basically the king that I write about and you all know and love today.  🙂

And that’s it. We have no explanation. Nobody does.

In the past few years we’ve done all the autism rights of passage. For one reason or another we’ve had MRI/ Catscans done, we did a 24 hour EEG, etc and as sick as it sounds I have rooted for something to show up on these tests. Something to give us an explanation or a direction to go in. Maybe he’s having silent seizures?  Maybe that caused part of the regression. And there’s meds that help with that. But all tests turned up normal…

So I’ve given up looking for an explanation. What’s the point?  How will that help me/him now?  And I’ve said in the other post that maybe he had CDD on top of his autism. Maybe he did but how will that knowledge help us now. There’s not a different treatment method for CDD. It’s the same deal with less retention and progress. Yep, that’s what we got…

And as for blame …I don’t blame ABA. That wouldn’t have caused his fine motor regression. I don’t really in my heart blame the diet or any of the biomedical things we tried. I don’t blame myself or my wife.

For the time being we just have to chalk it up to “SHIT HAPPENS” and stop thinking about all the things he used to do and stop thinking about the type of kid he was heading towards. And just love like crazy the crazy severely autistic kid we currently have.

It took me years to put away the things he used to do… But I have until this F*&KING blog post!

Ive put in far back in my mind.   Now i say it’s nice to know what his brain is capable of and maybe it’s still all in there.  And maybe some day the king will have a love for learning again and have his Carly Fleischmann moment but for now we’re just living in the here and now and trying to make our kid as happy as possible.

That’s all i got  The end. Whew. Thanks for drudging up all those good memories …NOT!

🙁

I think I need to take an extra antidepressant tonight!  🙂