The Toll

First off - I would like to express my sincere appreciation for all the positive feedback that I have received from everyone who has taken the time out of their day to read my blog.  

I have received one email from someone who kind of blasted me for not taking autism seriously - and I appreciate that to.  Because the person made a good point - and it was one that I was going to address when I had the courage to do so.

And it's not an easy thing to post.  I'm essentially a very private person, and I don't typically post things looking for sympathy, or trying to get people to feel sorry for me.  The life I have as a father is the one that God (or whatever your favorite deity happens to be called) chose for me...and while I am not always thrilled with the chaos that can be my life - I am grateful for the opportunity to be a father to a very special little boy.  I'm only ever going to get this one opportunity to be a parent...and I have to make the best of it.  My son's future depends on it.

So...just what was I blasted about?  More specifically - it was that I hadn't addressed the impact of autism on the parents of the child, or the dynamics of how the strain and stress of autism can impact your marriage.

Big breath...here we go.

Autism hurts.  And it impacts your life every day.

You feel the pain when you take your son to school - and other parents won't talk to you because you're the parent of THAT child.  Look people - I never asked for this, and I certainly never planned for it.  But he's my son - and I love him dearly...just as you love your kids.  My wife and I (mostly her....my wife is a much better at advocating on behalf of our son) are doing our very best to teach him the things he needs to know....so that he can be independent and stand on his own after we are gone.

And if the truth be told.  I've met some of your kids - and I think I got a better deal out of it.  My son is a warm and caring individual, able to express himself in ways that continually amaze me.  My son has never hurt anyone with intent or malice - and he has never picked on anyone, or made them feel like less of a person because they were different.  You can't say that - because I've seen your kids do just that....while you were standing 10 feet away.  Sure - you may be holding that Starbucks cup in your hand...and drive a nicer vehicle - and have a bigger house.  But you don't have what I have - and that is a child who is good and kind to people.  I've seen your kids act like the worst bully imaginable - while you do nothing about it at all.  And I get calls from school?  And for the record....my wife drives the nice car.  :)  

And besides all that...my son happens to be a babe magnet.  Not for me mind you.  For himself.  Without even trying - he has developed a little gaggle of girls that just love him to bits...they hug him when they see  him at school....and they kiss him on the cheek.  There's a reason for that.  Children are able to see through things and see people for who they really are.  And they see a sweet little boy...who is totally adorable, and is able to share his cookies at lunch.

If you've never felt the crushing blow of not being able to do the simple things that every other parent can do with their normal child...you can't possibly understand.  It's only now - after years of trying that my son can catch a ball.  I had the same hopes and dreams of every other parent...you know....the little league stuff, going to soccer, etc.  It is really painful to try and deal with the realization that all the things you had expected to be able to do as a parent may in fact never happen.  And we've tried a lot of things with him - looking for the things that clicks.  We have ruled out skating (but I'll still try that with him), karate (he just liked the Keeee-Yaaa sound!), etc.  Swimming is his thing.  And music.  And trains.  And books.  And You Tube.

Unless you've experienced autism (or some other developmental issue) you can't even relate to how I feel.  My wife and I wanted more than one child - but with the expenses of autism, and the strain of just trying to deal with it - and learn as we go....we had to give up on that dream.  We bought a three bedroom house for a reason.  And now?  The third bedroom is my son's therapy room.  Having to let go of a dream for largely financial reasons is devastating.  I love kids - I'm still one myself in many respects....and I wanted more than one.  And I'll never have that...and that hurts.  I am thrilled when I hear that a friend of mine has had a child...and I always quietly pray to myself that they don't have to go through this.

Unless you've experienced autism - it isn't your place to give me helpful suggestions or tips that worked for your child.  We're talking apples and pumpkins here.  There is no similarity at all between the two...and what works for your child is great and all - I'm really quite happy for you.  But you don't know...and you don't know how my son works (a lot of the times - i don't even know).  The things that work for the 'normal' kids just does not work for autistics.  I should know - I've tried the suggestions....and it made things worse.

Unless you've experienced autism - you will never know the pain of what it is like to not be able to have a simple conversation with your child.  Yes - my son and I talk all the time...but it's largely about his world, and how he sees it.  It is an very interesting place from what I hear.  :)

If you've ever seen me physically removing a kicking and screaming child out of the mall, or a store....don't stand there and gawk at me.  I am not sorry that my son's condition has inconvenienced you in any way.  You just have to hear it once in a while - I have to live it 24/7.  And just so you know...when an autistic child is going through the throws of a tantrum.  It's not because they want to.  They really do want the same calm and serene life that most people share.  They simply are unable to calm themselves down.  I know - I've asked him why he can't calm down...and he says he can't.  And my son is much like me...we're both terrible liars.  My son is just wired differently that's all.

Everyone has problems in life, and has to deal with things they don't like.  I'm no different, and that doesn't make me special at all.  Just being able to hold a marriage together under the strain is hard enough.  Sure - we've had problems...and we've been able to work through them.  The divorce rate amongst parents of autistics is double that of those of you who don't have to contend with this.  For the record - this year will mark my 9th year of marriage...the last 5 of which have been under the strain of autism.

I guess what I'm trying to get at is this.  

I'm not looking for your sympathy, your empathy, or your concern.  Understanding is all that I ask.  If my blog is able to educate at least one person - and get them to open their eyes and see these kids for who they are - then I think I'll have done a good job.  There are a lot of these kids out there today....and the numbers are increasing very quickly.  We're in the midst of an autism epidemic...and you all need to get wise and understand these kids....because they'll be looking after you when you're old and gray.  And these kids remember everything....