Tuesday, May 22, 2012

Kyle in the hospital with seizures...a Tues update

If you only read my blog then this will be news to you so please check out my Facebook page for more of the backstory. For the rest of y'all here's the latest news...

Tues 6:46am -- We are still in the hospital. We finally had a 30 minute EEG yesterday afternoon.

I know you're all thinking "why only 30 minutes?". Well 30 minutes is all they needed.

They saw 6 seizures in that time. 5 silent seizures & 1 complex seizure.

The complex seizure was like the

Monday, May 14, 2012

Where Will He Live When We're Gone? The question many autism parents are afraid to ask...








(originally written & published on May 14, 2012)

Ok, I've had a blog post rolling around in my head for a few weeks and I keep saying... I'm gonna write it some day soon...but here's the gist...

What happens with our kids with severe ASD after mom & dad are gone?

Group home?

So do you set that up while your still alive? Do you move him in while your still alive?

In my mind I picture Kyle living with us til we die... And then moving somewhere gorgeous like a farm with horses the very next day...

But that's not realistic right? So how does it all work? This is where I need help and advice from the moms and dads of all the severely autistic adults in their 20s and 30s. Where are they? Oh that's right, we're in the middle of an autism epidemic so I guess there's not a lot of severely autistic young adults out there...

But there's got to be some... And there's got to be some of the moms and dads of severely autistic young adults who are blogging about their experiences.

So let's hear from them!




What's the plan? How do you figure

Wednesday, May 2, 2012

Should I Be Doing More? Autism & a dad's guilt...

I've been in a bit of a funk the past few days due to a bunch of reasons that I don't feel like sharing with y'all... but basically I'm back in that place where I don't feel like I'm doing enough to help my son progress.

As you've read recently my son has made some progress behaviorally this past year and is for the most part a happy kid. And that is huge because at this time last year started the spring/summer of rage.

But aside from that he hasn't made any significant progress this school year and it often feels like he is light years behind most kids on the spectrum...even those on the severe end.

Ok, so we don't have alot of the behavior issues and he is happy and he's not "in his own world" most of the time. He can be very related and affectionate and can have some great eye contact. So we are lucky in that area. And I already listed all the ways that my grass is greener (read that post HERE) and I've really tried to stay positive and look at things on the bright side...but I think this Autism Awareness Month got to me...wore me down.

During April I reposted a lot of my old blog posts. And I also read way too many other stories about autism. And I think
that got to me. And even reading some of the heartwarming stories got to me and made me realize how far behind my son is.

He will be 9 years old next week. He is non verbal. He has very low receptive language. Aside from taking our hand and leading us to the tv he has no way of communicating. He still has weak fine motor skills, has trouble using utensils, has trouble dressing, his point isn't great, he has trouble pointing to what he wants on the iPad.

I've said it before and I'll say it again. He's got the receptive & expressive language of an 18 month old and he has been there for YEARS!

But he's happy.

But should we be doing more? Should we be running ABA trials with him at home after school each day? Should we have him following a PECS schedule at home even if he doesn't really get it? Should we be expecting more from him?

I wrote this in an old blog post last July (called "Happiness vs Progress") and it is still true today...

"...When Kyle thinks you are asking something of him, making him work. Even something he knows like “point to eyes”, he gets this pained look on his face and he starts breathing heavy and he will try to get out of the situation..."

So, should we be pushing him harder? And expecting more from him? Or should we just accept that we have a severely autistic kid who will make little or no progress moving forward and just thank our lucky stars that he's so happy and well behaved right now?

One of the reasons that I'm in this funk is because at least a half a dozen people have written me in the past 3 weeks and suggested that we try the "Son-Rise" autism program with Kyle. And singing its praises. And saying its really helped their ASD kids and their relationship with their kids.

And I feel like that is the ONE thing that we haven't tried. We've tried all the teaching methods, diets, and treatments. It feels like we've tried everything over the years and I've written about everything we've tried HERE, everything except for Son-Rise and now I feel guilty about it. (I'm so freaking tired of feeling guilty!)

So we haven't plunked down the $4400 for me & the wife to attend the Son-Rise training. But after trying so many other therapies & treatments over the years that didn't work and after years of trying to "work" with Kyle at home with no success I'm done trying anything drastically new... especially if it'll cost me almost 5 grand.

So for now we don't do much "teaching" with Kyle at home and we don't demand much of him. He goes to school each day and we get mostly good reports in his communication notebook. The wife has him involved in a lot of after school & weekend activities (swimming 3x a week, music therapy, special needs gymnastics, etc, etc) and for the most part he enjoys them and is well behaved at these sessions but he's not making much forward progress.

And when school and all the activities are over and we do have him home he rules the roost. He is king of the castle and we pretty much let him do what he wants as long as he's happy & it's not dangerous.... watching tv, eating his books, grabbing fistfuls of cheerios out of the box and wandering around the house dropping them along the way, etc, etc.

And I was really starting to be ok with this the past few months because he was so happy and we were all getting along so well. But then I keep reading about all the progress that some kids are making with this method or that program and it still drives me crazy. We've been in this autism world over 7 years now and the guilt continues...and it goes away for a little while, but then it comes raring back, and it doesn't get any easier.

Should I be doing more? Or should I have done more back then? Did we stop a certain treatment or teaching method too quickly before we would see any gains? Did we pick the right school? Should we have fought for more services on his IEP last year...or 4 years ago? Would an extra speech therapy per week really be making a huge difference? If we were filthy rich and could afford the best private autism school in the world and 40 hours a week of the best aba money could buy would our kid be exactly the same as he is now? Or would he be verbal? Would he be higher functioning?

Should I be doing more?

Oh it eats at me sometimes!

I'm so freaking tired of feeling guilty...

The end....

UPDATED SEPTEMBER 15, 2012

I don't feel guilty about not trying the Son-Rise program anymore. From what I've heard & read & read in your comments it seems like a great program if you need to reach your kid / enter your kid's world. We kinda don't have that problem with Kyle. He has good eye contact a lot of the time. He seeks our attention sometimes. He is not always in his own world. He is affectionate. And I don't feel like I need to be indoctrinated into a new way of looking at my son. I love him. He's a lot better behaviorally (lately) than many ASD kids who are much higher functioning.

Lately he's just the world's biggest & happiest 18 month old. I've said it before and I'll say it avian. You know the expression "if you've met one kid with autism then you've met one kid with autism." Well I really feel that way about Mr. Kyle. He's really seems drastically different than almost all other ASD kids we know.

So the guilt of everything else in this post still applies but I don't feel guilty about not trying Son-Rise anymore (although I'm sure someone will leave a comment below praising Son-Rise and I'll feel guilty again)

:-(

The end...

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