Saturday, March 31, 2012

Decisions, decisions... Autism vs Parkinson's... What should I do with my Saturday afternoon?

Being a grown up sucks! What should i do with my Saturday afternoon today?

The 2 choices i have in front of me today are not the kinds of things you dream about when your a kid or even a teenager and you think about all the cool things you're gonna do with your weekends when you grow up.

And they are not the kinds of choices that you dream about when you think about having kids.

I am firmly part of the "sandwich generation" sandwiched in between taking care of my kids and taking care of my aging parents.

And if you've read my fb page and blog often you'll know that I'm also sandwiched in between severe autism (my son) and advanced Parkinson's (my dad)

So my choices for this afternoon? An autism birthday party at a bowling alley VS. going to see my dad in the nursing home who I haven't seen since last Saturday.

Friday, March 30, 2012

Happy Autism Awareness Month -- Just Remember Blue's Not The Only Color In Town

Ok, let me say straight away that this is not an Anti-Autism Speaks post.  I wrote this about Autism Speaks in an old blog post....

I know there's always a lot of controversy around Autism Speaks and I'm not always a fan of everything that they do, but I will say this. I have no issues with AS with the way they portray autism. Others in the Asperger’s community feel that AS doesn't represent them, and maybe it doesn't  But it does seem to represent those with severe debilitating autism. My son has SEVERE autism... (you can read the whole blog post HERE)

And ol’ Autism Daddy has done a lot of fundraising in the past for good ol’ Autism Speaks.  We participated in 3-4 Autism Walk events over the years and we had our own crew “Kyle’s Krew” and we all wore our team shirts, etc.  And then I also ran 3 NYC marathons as part of the Autism Speaks team.  Between the walk events & marathons the wife and I have probably helped raise over $40,000 for Autism Speaks.  And the Walk events are great as a show of solidarity & support from your friends & family.  We’ve got photo albums filled with pics of “Kyle’s Crew”, some years 40+ people strong.

Thursday, March 8, 2012

Autism Is Like A Cough... Here, let me explain...

(originally written & published on March 8, 2012)

Dear Parents Of Low Functioning Kids w/ Autism,

I'm writing this letter as much for my benefit as yours.  What I'm writing to you today are things that I often need to tell myself every couple of months when I get depressed that my kid is the lowest functioning kid on the block.

If you don't know already, my wife and I have one child, an 8 year old boy with severe / classic / non-verbal autism.  He has the expressive & receptive language of an 18 month old and he's been stuck there for a few years now with little significant progress to speak of.

And when I look around at the other ASD kids & families in our lives (forget about the NT families!) and how their kids are making some nice progress (even some of the low functioning kids) I sometimes feel like I must be doing something wrong...or even worse I'm not doing enough to help my kid progress.

Tuesday, March 6, 2012

Living With An Alien... This is the autism that we are dealing with.


This past weekend was my "birthday weekend".   I turned 42 years old on Sunday March 4th.  And we had a really nice weekend.

Saturday night we had my mom, sister, brother-in-law, and my wife's folks & sibs & their kids over for pizza and birthday cake.

And then on Sunday my sister-in-law and niece watched Kyle all day at our house so the wife and I could stay overnight at a fancy hotel.

We had 28 hours of autism freedom. From 10am Sunday until we picked him up from school at 2pm on Monday we were free from autism.  And the wife and I had a great time.  We know how lucky we are to have a family that gets it.  And a family that is so willing to step in and help when needed.  They are GREAT!

But that's not what this post is about.

Today's blog post is about my brain.  Having an autism free 28 hours didn't stop my brain.  Unfortunately my brain was not autism free.  And random thoughts kept popping in my head about how different our lives are than typical parents & from what I can see other autism parents.  How sometimes it feels like the autism we are dealing with is unlike anybody else's autism.

I know, I know, there's that saying "if you've met one kid with autism then you've met one kid with autism" but I REALLY feel that way.  I really feel sometimes like we are not raising an autistic kid.  Sometimes it feels like we are raising an alien from another planet.

Here's some random thoughts / examples that infiltrated my brain this weekend.

At my pizza night birthday party on Saturday at around 8pm Kyle made it be known
that he was DONE.  So my wife and sister-in-law took him upstairs to attempt to get him to sleep.  It took over an hour.  The party continued downstairs.  At around 9pm my wife & sis-in-law rejoined the festivities, and they served cake & coffee and they sung me Happy Birthday and I blew out my candles. 

And then I realized that my son wasn't there for that.  And it's happened before...sticking to his bedtime schedule is probably better for everyone involved... and it's never bothered me before.  And it didn't really bother me this time.  I just noticed it this time.  And I noticed that no one even said "aww Kyle's not awake to help blow out the candles".  It was just a given that he wasn't there.  And it stuck with me.  And it made me think that I have NO IDEA if he knows what a birthday is or what it means or what it signifies.  I have no idea, but I seriously doubt it...  This is the autism that we are dealing with.

Then on Sunday morning when my wife gave me my birthday cards & gift.  She gave me a card from my son.  And she wrote it out.  In the old days we would at least attempt to get Kyle to scribble or color something in each other's cards.  But we haven't done that in a few years.  Again it didn't bother me as much as I noticed it.  And again it made me realize that my son probably has no idea why I was opening gifts.  This is the autism that we are dealing with.

Then, we are getting Kyle ready Sunday morning.  My sister-in-law & niece were coming to take him off our hands at 10am to take him to his Sunday activities, I say to the wife "did you tell him what's going on today?"

We say that to each other often.  It's kinda to remind ourselves that we should tell our son about things, changes in the routine.  Something as HUGE as mom & dad going away for a day and him staying with his aunt & cousin and we didn't tell it to him until 20 minutes before they arrived.  Meanwhile, there's a suitcase being packed and meals being prepared in advance for the king.

So my wife goes about explaining to Kyle what's happening today.  And as usual he seems oblivious to what we are saying...just going about his business.  Is he getting it?  Does he understand?  Who the heck knows?!  It sure doesn't seem like it.  His receptive language doesn't seem that great.  So we are not proud of it but sometimes we forget to tell him what's going on.  And we need that "do you tell him what's going on" reminder.  This is the autism that we are dealing with.

Then when my sis-in-law shows up I hand her the 2 page military style agenda of EXACTLY what to do & when ...with all the vital instructions of what to feed him, when, which meds, when, potty breaks every 30 minutes, etc, etc, etc.  And then they go to leave.  And we are not going to see our kid for 28 hours.  Does he get it?  Do we get extra big hugs?  Nope he gladly goes with his aunt & niece and only when prompted will turn back to give us a half wave.  Would he gladly go off with anyone?  This is the autism that we are dealing with.

So all this was running thru my brain during our time away....not ruining my stay...but just rolling around in my head.  How he's like a little alien, just going thru life, getting his point across sometimes, but most of the time going with the flow.  We sometimes kid that our dog has better receptive & expressive language that Kyle.  I know that sounds cruel, but it really is true.  She knows when you are talking to her.  She comes when you call her. etc, etc.  And the bitch knows how to get her point across.  When she has to go out or she we are late with her supper she makes it known with her actions and her voice.  Kyle could take a few lessons from her.  This is the autism that we are dealing with.

Anyway all this is rolling around in my head while away.  And then we get home and the wife goes to pick Kyle up from school.  She calls me 15 minutes later to say "since you're off today meet me at the doctor's office to get that blood work we've been putting off" and I say "did he make a big fuss when he saw you, did he miss you?"  I don't know why I ask that question cuz the answer is almost always no or to save face something like "he seemed a little happier than usual."  This is the autism that we are dealing with.

Then I meet her at the doctor's office and the kid hasn't seen his dad in almost 30 hours and maybe he seemed a little happier than usual to see me (but not really).  As we are taking him up to the doctor's office I say to the wife, "did you tell him what's going on?"  "Nope"  So I proceed to try to explain why we are there and what's gonna happen.

Anyway, that's about it.  That's all I got.  This is the autism that we are dealing with.  There's a lot of things in this post that I'm not proud of, but it is REALITY in our home.  This is the autism that we are dealing with.

Oh, by the way, he did really good in the doctor's office when he got his blood maybe he got what I was saying there... but who the F knows?!

The end....

If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!


Saturday, March 3, 2012

10 Greatest Autism Inventions Of The Past 100 Years (at least in my household)

(originally written & published on March 3, 2012)

Everybody's always RAVING about the Ipad and how it's the greatest invention for asd kids and it is GREAT.  My 8 year old son with severe / classic / non-verbal autism has an Ipad and I wrote a post singing its praises (you can read that HERE), but lately every day it's the little things in life that I've been noticing. 

So I decided to salute the inventors of the little things that have improved my asd kid's life and in some cases saved his life and in some cases save his life on a daily basis!

I'm sure a few of these are unique to my household and my autism lifestyle, but I'm sure there will be a few on my list that many other autism parents can relate to.

So here's 10 inventions that when they were invented had no idea they would have such a huge impact on my and my asd son's life... 


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