Letting Off Some Steam

Before you read today's post, you might want to read the comment left on yesterday's.  It might help you understand what I'm writing about today just a bit better.

A word of caution - today's post has the potential to be quite rambling so I hope it ends up making some sense.

I can't believe that I forgot to tell you about something I saw on TV back in April.  Many of you have probably already heard about it by now.  I was reminded of it by the comment left after yesterday's post.

If you haven't heard about Carly Fleischmann, a teenager with autism, click on Carly's Voice to visit her blog.  You can watch several interviews and read about her amazing ability to communicate.

I shared with you a couple of weeks ago about a new skill that Lily has learned and that we are currently working on to expand even more.

You can goggle Carly's Voice and there are rumors floating around the web wondering if the whole thing is a hoax and simply made up by people (including Carly's parents) who are just looking for their fifteen minutes of fame.

Back to Lily's ability to match words with no pictures - this skill was discovered almost purely by accident at her school one day.  Sure, Lily has now been in intensive behavioral therapy for a year.  And she sees words on a daily basis - as she's doing puzzles, looking at books, using her iTouch to communicate or playing on the iPad.  But no one's been doing flashcards with her.

And no one had ever simply put plain word cards in front of her to see if she could match another plain word card to one of them.  No prompting, no pictures as hints, no guiding by the therapist's hand, nothing.  Just white cards with black words typed on them.

And yet she did it.  All on her own.  And she continues to do it.

Reading, writing, typing - these are skills that some autistic people will never accomplish.  Yet my Lily seems to be on her way to doing those very things.

You want to know why I think kids like Lily and Carly can do things that most people think that nonverbal autistic people can't do?

Because we're talking about the brain.

One of the most mysterious organs in our bodies.

And we simply don't know everything these kids can and cannot do.

And we probably won't ever know all they can and cannot do.

Not everything in the world makes sense to us all the time.

We're not all as smart as we think we are.

Some people are criticizing Carly and saying all of her communication is completely prompted by her therapists.  That her thoughts are not her own.  That she thinks about the feelings of others and shows empathy, something autistic people are not supposed to be able to do.

Well, who said?

And who can really know that for sure?

I don't care what kind of degree you have or what level of expertise you've reached in your field or how many alphabet letters you have following your name, you simply can't know everything.

Nor do I.

So I'm willing to accept that Carly just might be able to show some empathy.  Even though it's a recognized and accepted belief among the autism community that people with autism don't think about the feelings of others does not mean that it can't happen.  It doesn't mean that every single person with autism is 100% unable to show empathy.

We just don't know.  Because we don't know everything.

Again, I truly believe that the heart of the problem of autism rests in the brain.  We can do all kinds of things to improve the symptoms of autism, but I believe it's similar to a brain injury.  And that is the reason we are gathering up all of Lily's medical records and going to visit a doctor in California.  We want to focus on the brain, not just treat the symptoms.

But that is my opinion of Lily's experience with autism.

It does not mean that I think this is what every person with autism in the world should be doing.

It may or may not work.

But if it doesn't work for Lily, that doesn't mean I'm going to write this California doctor off as a total quack who is trying to capitalize on desperate parents willing to do anything to "heal" their kids.

I'm not going to refer to his practice as a "hoax" and dedicate a blog to trying to discredit the man.  If he helps one child with autism, then it's worth it.

We are all unique individuals.  What works for one person may not work for someone else.

For example, I have headaches on a regular basis.  I can take two or three ibuprofen and my headache just laughs at it.  It does nothing for me.  Yet my husband can get a headache, take one ibuprofen and it's gone.  Just like that.

Someone might think that my headache was worse than his and that's why mine didn't go away despite taking the same medicine.  And taking more of it.

Or maybe I have a different kind of headache.

You would not lump everyone who has headaches into one group, give them a label, and assume we are all exactly alike.

The same is true for autism.

There's a saying that goes like this - "If you've met one child with autism, you've met one child with autism."

So please do not lump every single person with autism into one category.  And one description, like this:

People with autism do not pay attention to other people.  They do not interact with other people.  They are very rigid and like order.  Routine is very important to them.  They do not like change.  They are not affectionate.

This does not describe my Lily Bird at all.

Does that mean she does not have autism?

No.

It means she is one child with autism.

And the people you know who have autism?

They are each unique individuals.  The diagnosis, the label, is really the only thing they may have in common.

We truly do not know what all these special needs individuals are capable of.  Nor should we feel like we have to figure it all out.

The point is - you just keep trying!

You don't give up!

I don't know what's going to work.  I don't know what isn't going to work.  So I try everything.  And I'm  going to keep trying everything.  And I'm going to re-try things that didn't work before to see if they might work now.  Or years from now.

And it doesn't really matter to me if an "expert" tells me Lily may never talk.  I'm not going to just say, "Well, OK.  I guess we'll just take her out of school, keep her home, and try to give her a good life."  No.  Because that "expert" doesn't know for sure.  And he doesn't know my Lily Bird.  He does not know.  


And that is why I keep on.  And that is why every parent I know who has a child with special needs keeps on.


Because unlike all those "experts",  I don't see an autistic child when I look at Lily.  


I see my daughter.


And I'm not giving up on her. 


I never will.