An Open Letter to Parents of Autistic Children

An Open Letter to Parents of Autistic Children:

I've been ruminating on this post for quite some time, so bear with me.  Like most of my posts, this one will likely be long, rambling, and not as funny as I think it should be.  However, I think it is important.

This blog gets a lot more traffic than the "following" widget shows.  While some of my readers land here looking for porn (seriously? nude Aspie?), most people use search terms such as "what to do with my autistic child?" and "will my autistic child be ok?" or variations thereof.  I do, invariably, get a little bit of e-mail from people that land here.  Some of it is rather rude, but most of it is sent from a place of desperation and a need to feel that everything is going to be all right.  This letter is for those parents who feel as though they have an endless struggle on their hands, and they are looking for a little encouragement.

I would like to apologize to you.  I cannot tell you that your child is going to be okay.  I cannot tell you that he is going to be high functioning.  I cannot tell you that your child is a genius inside his silent shell.  I can't promise you she will ever speak to you or hug you or be able to wear jeans without melting down.  In short, I cannot lie to you.  Some of your children will never say "I love you, Mommy."  Some of them will never look you in the eyes.  Some of them will never move out of your basements.  I'm very sorry.  On the other side of the coin, some of your children will learn affection, and some of them will soon talk your ears off and some of them will get married and have children of their own and tell stories at Christmas like, "Remember that time that I stood on the kitchen counter and shouted 'Bebo! Bebo!' over and over again because it was the only sound that I used to be able to make?"  Some of your children are Albert Einstein or Temple Grandin inside.  I wish I could tell you that your little Bert or Gertrude was that person, but I can't.  I cannot lie to you, even if you are desperate to hear it.

All I can do here is tell you how I function and how I feel about things and ideas that work for me to keep me functioning on a day-to-day basis.  I am but one person with autism, and I'm different from all of the others.  Therapy and social training worked for me in ways that it has not worked for others, as we are not all the same.

What I can do is give you a little shimmer of hope.  All is not lost.  I consider my story a success, and there are many other successes out there as well.  Your kid's may be one of them.

I know that a lot of you feel as though your child's diagnosis is a death sentence for your hopes and dreams for your little one.  I also know that you can't say that out loud without judgment.  If you need to say that, you can say that to me with zero judgment at all, and I can promise you that.  That feeling is perfectly ok, and it is perfectly normal, and, for some of you, it is perfectly valid.  For others, new dreams will emerge, and for others still, all of the original dreams will still come true.

To conclude, I want you to know that I am here for you, and you can vent to me, but please don't ask me to lie to you.  I can't.  I respect you and your unique child too much to do so.

With as Much Love as I've Learned to Give,

Karen

I was born a ramblin maaaaaaaaaaaaaaaaan...

Listenin to the ITunes on this fine, rainy Wednesday morning, oh, yes indeedy.  I've been running through the house singing at the top of my lungs.  NEVERMIND I'LL FIND...SOMEONE LIKE YOOOOOOOOOOOOOOOOUUUUUUUUUUUUUU!!!  My luck, the tech from DirecTV that's supposed to be here by noon will show up unannounced and listen for a while.  I hope he brought industrial-strength ear plugs.

So, this blog was prompted by my awesome friend from way back when in the high school days.  She posted an Aspie fact sheet, which  you can find HERE.  Anyway, I posted all confident that I think we autists are the more evolved of the species and that we are the future (mostly joking).  Another of her friends mentioned on the post that when he comes across folks whose family members or children have been diagnosed, he generally recommends they watch Temple Grandin and purchase a copy of the film for others to check out.  So, this little paragraph is in response to that.

I think a lot of people watch Temple, though, and expect that we are all like her.  It's kinda the same as if they watch any movie about autists or read a book about autists or even know an autist, and then expect to know about all autists.  We've gotta saying, "If you've met one person with autism, you've met one person with autism." haha  I wish we all did fit into one mold.  Then it might be easier to figure out where the autism comes from.  Is there a gene that we haven't found, yet?  We don't know because we're all different, some autists have a gene, and some autists don't, and some neurotypicals have the damn gene, too, so it's not the right gene, and we just keep going through this vein over and over.  I sure would like a lot of questions answered.  Hell, I'd like a cure, and by me saying that, the autist community would like to punch me in the knees.  I can go around on my high horse all I want (like I did above) saying we are the wave of the future blah, blah, blah, but the fact of the matter is, I cannot keep a job, and I don't provide for my family, and I'm lucky I'm not rotting in my parents' basement for the rest of my life, and all of those things would be possible for me if I didn't have this...thing.  We're trying to have a baby right now.  It sure would be nice to know HOW genetic this is.  I am high functioning.  Is my baby more likely to be low functioning?  Am I doing the baby and the world a huge disservice by even attempting to procreate?  I'd like to know.  If we were all the same, I bet we could figure it out.

To go back to the original point, it's not that I don't think Temple Grandin is a great movie or that Claire Danes isn't awesome, because I totally do think it's a great movie, and I've loved Claire Danes since she tried to hook up with Jordan Catalano, but I really don't think Ms. Grandin should be considered the norm for the autistic community, KWIM?  I'm sure she's a really amazing human being and all that.  Ah, heck, I think I'm just making excuses for my douchebaggary at this point.

In other news:  I had this horrid nightmare last night that there was a tornado, and the house collapsed.  The kids and I were stuck in the glitter potty in the basement.  My phone had no bars to make calls, but my 3G was up and running, so I had to post on IndyMoms and ask them to call 911 because we were buried in the basement and we had water and a toilet and plenty of glitter, but no food.  I was calm in the dream, and then it suddenly turned all nutso crazy.  Suddenly, it was more than, "Please call 911 to dig us out of the basement."  It was, "The house collapsed, and the kids and I are stuck in the basement, but Eric was upstairs, and I'm calling to him, and he isn't answering."  And then tons of people came to the house to start digging us out, and we could hear their machines, so I was keeping everyone updated on our progress online, and then someone shared a news story with a picture of our house on it and the news that they had found my husband's body.  I was sitting in the basement knowing my husband had been killed but trying not to grieve in order to not scare the dudes even more than they already were being in a basement surrounded by toilets and glitter and silently plotting my revenge on the news station that had reported the death before the next of kin was notified.  As soon as we were dug out, I rushed out to the news fan and beat the reporter up who had done the story and had to be carried away by the police.  I was then carted off in a police car with Eric's ex-wife's mom (a very nice person in real life) screaming at me that now that Eric was gone, I have no rights, and I can expect to never see the dudes again and hahaha!  I woke up with a pillow soaked with tears and my heart about to explode.

This is a very real problem for stepparents, of course.  If something happens to our husbands, we have zero rights to ever see the children again.  Even if their home is with us for years and years.  There is no recourse.  We are at the mercy of ex-wives to allow us to continue to be a part of their children's lives while dealing with the grief of losing a spouse at the same time.  It's just the way of the world and the way of the law.  It's one of those things where you just hope and pray you don't come to that bridge and have to try to cross it.

Check out how I depressed every one of my readers in one fell swoop.  That's pretty awesome.  I had another thought running through my head, too, but it's as equally not funny, so I'll leave it for another day.  I'm sure I won't forget it, as I get a reminder of it every time I leave the house.