Monday, April 4, 2011

The Hardest Part . . .

Sometimes people ask me what the hardest part of having a child with Autism is . . .actually no they don't.  Probably because they are worried about upsetting me. 

 However, everyone who has spent any amount of time around me knows that I like to talk about things-that need-to-be-talked-about-but-people-avoid.  People really want to be validated and asking a parent of a child with special needs a question about their child or situation would probably touch them in that way. It would be the rare person that would be offended by a question of this nature - it shows sympathy, interest and an awareness of the other person's difficult situation.  It's probably easier for me, being on this side of the fence, to do that however.

  Once you are a member of a "club" you feel like you have permission to do and say things that you can't if you are not a member.  For example, new mothers of multiples are always hit by a blizzard of comments and questions about their kids and they respond by either being annoyed, flattered (for awhile) or overwhelmed.  Being a mom of HOM's (higher order multiples-ie triplets or more), I feel justified in asking questions and when I occasionally get an annoyed expression from "new mom of multiples,"  I just point out my four same-aged kids on the other side of the playground and get a look of  "Holy cheese Batman!  She does know what she's talking about."  Ha ha I live for those moments.  Smugness in any form irritates me.

 From other people that is.

But back to the point at hand.  The hardest part of having a daughter with Autism, for me, is two-fold.  Last night I was watching an old movie called The Miracle Worker, about Helen Keller.  Being blind and deaf seems insurmountable to most of us.  Add onto that no technology, modern therapies or even electricity!  When Helen was a child close to the age of my daughter is now - about 7, her teacher Anne Sullivan came to live with her and bring her out of the darkness so to speak.  She was locked in a lonely world by failure of her senses.  My daughter is locked in a similar world, though her senses work.  Honestly, I sympathized with these poor parents who had no idea how to reach this child other than to spoil her.  That is so hard.  You think to yourself -"well she doesn't get to do what all the other kids do so I will just let her have, do, get away with X, Y, or Z"  Things you wouldn't think for your typical kids.  I can especially relate to the scene involving meal time where Helen is running around the table stealing peoples' food and eating like an animal.  You may remember my chicken nugget story.

However, the hardest part of our situation, to me, was illustrated in the movie when Helen's teacher was trying desperately to help her make a connection between words and objects.  And it finally worked - she ran to her mother and spelled "MOTHER" in her hand and hugged her.  I am glad no one was watching me at that moment because I came a little unglued. 

Despite her disabilities she still knew who her mother was, she loved her, she knew her mother loved her and would protect her and take care of her.  I was jealous.

Yes I have five kids and the other four understand this. But one, does not.  She knows I am her mother, she "loves" me in her way.  She can't really show it.  I have been working with her on how to give a real hug and kiss for a long time and she is starting to do it on her own finally but she would never seek me out for anything other than a need such as thirst, hunger or a visit to the restroom.  It hurts.  I want her to know that I think about her all the time.  That I will protect her with my life.  That I am the one she should run to when she is sad, lonely or hurt.  If she gets hurt or is scared she just suffers alone.  She can't tell me what is wrong and she would just as easily run up to a total stranger and take their hand to guide them to some object she can't reach because its too high. 

Can I explain to you how hollow I feel inside when I go to my daughter's class as the room mother and she doesn't even look up when I enter the room?  Or when the other kids in her class (yes, all with autism) run to their moms with excited expressions of love even when they don't express it well with words?  It's my own little Hell that I have learned to accept but it still hurts, every. single. time.  You can't spend all your time sad and Why me-ing though right?  So it stings and you try to ignore it because other people aren't comfortable with your pain.  I get that.

The other part that I find most difficult is when my other children meet milestones that I know she may take years to get to if ever.  Let's be honest.  She will always live with me.  She will probably not go away to college or get married.  It doesn't mean she wont be happy and have a good life but it's not what dreamed for her when she was born.

Maybe she realizes this, or not, I hope.  But I probably won't ever know.  One day soon I will write a post about all the blessings special needs kids can bring into your life.  There are many.  Parents and teachers of special kids know this well.  But not today.  Today I am not in that place.  Today I am thinking about what isn't going to be and praying desperately to be proven wrong by that very smart girl who is locked in her own world. 
April is Awareness Month.  Maybe ask a question of a friend or acquaintance who has a child with autism. 

 1 in 110 kids- people.  Think about that.

1 comment:

  1. I watched Claire Danes in "Temple Grandin" the other night and thought of you the whole time, of course, but especially when the mother gets a kinda hug...more like an intentional lean in. This post paints a beautiful/terrible picture of your experience! Thank you.