Wednesday, June 22, 2011

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. 

18 comments:

  1. AMEN! Lana, you are one of the most open, outspoken, and loving person with a child with autism. What you say is absolutely true. Every child with autism is different. I have a step grandson with it, a personal friend who has a son who is 15 and he has progressed more than they ever thought...public school! I totally agree with all you have said and encourage you to keep on with all that you do for Lily. I wish more parents with children with autism or any other disease for that matter could be more like you and accept their children for who they are...unique creations of God, who do have a purpose in life and they will impact lives. We may not understand what it is, but God does and it will give Him the glory.

    ReplyDelete
  2. You should submit that to an autism journal or a parenting journal or both. It's good enough and true enough that others should read it. Good for you! Beautifully said!

    ReplyDelete
  3. Just wanted to let you know that it's been a joy to watch Lily in VBS this week. It seems like she really enjoys music time :) She's such a sweet girl and has one of the most beautiful smiles I've ever seen! I love how much you believe in her, you're a great inspiration Lana!

    ReplyDelete
  4. I heart Lily! You are an amazing mother.
    - Mr. Jeff

    ReplyDelete
  5. Thanks to every single one of you for your kind words. All of you would do the exact same for your kiddos, too!

    Leslie - Hearing all the comments about Lily in music at VBS has given me the final push I needed to get music therapy going for her. I emailed a teacher just this morning. That girl loves some music!

    And Jeff - Lily hearts you and Yolanda, too!

    ReplyDelete
  6. This is a late comment, but I wanted to chime in with my own thoughts.

    You're absolutely right that no situation is the same. I have a disability myself, if not autism, and every website, book, documentary out there says I should be severely disabled. I have a college degree and well paid full time job. It's not that I don't really have the disability; it's just that my situation was a little different. As for Carly, she's still much more severely disabled than my autistic friends, but I have no reason to believe she's not "really" autistic, nor that they're not "really" autistic. Their disabilities just manifested in different ways.

    ReplyDelete
  7. Wow, you just never know what you would stumble on the internet . I was reading about Carly and found this in one of the searches . I became nterested about the "hoax" allegations. I would like to follow your blog after reading this one. I work in a school for children with special needs. I do not have a degree or even have any intensive training to deal with these children. However, I have learnt and still learning from the kids themselves. Ever since I knew about Carly, I believed what you say that they are as individual as we are. They are fearfully and wonderfully made. Please know you are a blessing. I 'm from Australia.

    ReplyDelete
  8. I have autism. I hated my therapistShe said I was finally developing social skills,that did quite more than get on my nerves. I was young at the time and did not quite grasp why I was going there but it dawned on me then. They did not think I was fully capable of interacting with kids my age. But I had so many friends and so many people I enjoyed talking too. The thought that they think I was having problems empathizing with others was of course ridiculous. I felt more emotions than they could possibly understand for people I didn't even know personally. I just acted on such emotions in ways they couldn't understand.

    ReplyDelete
  9. Anyone who has read John Robison will know that people with autism spectrum disorders often have strong feelings of love and concern for family. He can't empathize with a tragedy experienced by someone he doesn't know, but he has obviously powerful feelings of love and concern for his son.

    Carly Fleishmann offers those of us who with with people afflicted with ASD's insights into their world we never dreamed would be possible. We should all listen carefully to what she is saying.

    ReplyDelete
  10. Hello,

    I was just Googling Carly having only just become aware of her and came upon this site.

    I am a diagnosed Autistic (Higher functioning than Carly), and I can assure you that I certainly feel empathy with people, and I can assure you that most if not all Autistic people are capable of empathy - we are not sociopaths. I know it is said that Autistic people have no empathy and I can understand why this is thought, but it is a mistaken opinion. The thing is, we often lack the ability to display empathy in a way that is recognised by others, just as we can shun displays of empathy for us from others due to it feeling too intense.

    Our problem with communication is that we find it difficult to use display communication, even those of us like me who can vocally talk (I first started communicating vocally when I was five and a half)... therefore things like a display of empathy is not likely to come from an Autistic, but this does not mean it isn't there and felt deeply.

    I just wished to tell you all this because I know it is often put around that we have no empathy.

    My very best wishes to you all.

    N.

    ReplyDelete
  11. They say autistic kids don't show affection, yet my son gives me kisses and hugs every day! There is nothing set in stone about autism, so we're learning every day

    ReplyDelete
  12. Sorry to be the skeptical voice here...I have worked with children and adults with Autism Spectrum Disorders for the past 35 years. Do a Google search for "facilitated communication" and you will see the phenomenon that is described here. It is not an attempt by the parents to get attention; it is parents who desperately want nothing more than to believe that their daughter is communicating eloquently about life. As with the facilitated communication experiments, without the input from the well-meaning facilitators, there was little or no communication.
    My objection to the video is the sentiment that is expressed by the father regarding group homes. Over the years, I have seen parents struggle with this decision. In my experience, 95% of the time, the group home placement has benefited the child, the parents and any siblings. Most regret not having done it sooner.

    ReplyDelete
    Replies
    1. The father's opinion was that he did not want to put his child in a group home. He's allowed his opinion. As a practitioner, we are ethically bound to achieve behavior change within the family's beliefs and culture.

      Delete
    2. Carly is quite clearly not 'facilitated communication', since she types alone (as shown in the video) and, apparently, also does so with nobody else in the room.

      Delete
  13. Also, you are using some skewed data if you're finding 95% of the time it was beneficial to place a child with autism in a group home. The rate of abuse and neglect in many group homes (or any medical setting for illness, disability, elderly, etc.) is extremely high, not extremely low. Yes, there is good and safe care out there, but there is also a lot of unsafe care, including day programs and camp-like programs.

    ReplyDelete

Related Posts Plugin for WordPress, Blogger...