Saturday, August 04, 2007

Trying To Make Apples Out of Oranges

I saw Oprah show the other day on autism. Naturally, I was interested in what everyone had to say, and wanted to see how so many families are doing with their children who are autistic.

Since Paige has been born, I've always been somewhat puzzled about human development and human nature. We try to be so politically correct, and so unbiased, and so accepting of people who are different, whether it be because of race, religion, color, ability, etc.

But, I sometimes feel as if I fall very short of that non-prejudice way that I am supposed to be living.

I wrestle with a lot of things when I consider Paige "disabled." Even more so in the last year, as we have received an additional diagnosis of autism, and as I have been reading so much about autism itself through the eyes of a person who is autistic. Amanda has made me re-think so many things, and has made me realize maybe I haven't been that far off in the things that I have considered.

Like most parents of a child with T21, or other developmental challenge, I have, at times, felt very guilty and very much like a bad Mom when I haven't been rigid in my "training" of Paige - when I have let a therapy slip, or tossed away an afternoon by playing in the pool instead of working on letters or speech, or behavior.

I think for all of us, there's always this nagging thought that we could have done just a little more...and if we did, maybe our kids would be just a little farther ahead in their progress if we did.

But, here's the rub...

I have always accessed all of the available services for Paige - OT, PT, SLP, hippotherapy - you name it, we have faithfully signed up for it all.

Yet, here I am, the mom of a beautiful, intelligent little girl of 10 who does not speak...who by all accounts, is perhaps at around a 3 year old age level in all areas (except speech, of course).

What I wrestle with, though, is this...

Maybe, just maybe, its quite o.k. that she is developmentally 3 years old. Maybe, just maybe, that is exactly how God has intended her to be. Maybe she's not broken, and maybe I shouldn't be trying to glue the pieces back together.

We all say we want our kids to be happy. Would Paige be immensely happier if I were able to train the T21 or autism out of her? I'm not so sure she would be...because she seems quite joyous just as she is.

Is it fair for us to strive so much to bring our kids closer to "normal"? Or is it simply our desire to have them be more "normal?"

Obviously, we should be doing everything we can for our kids to help them achieve their best, just like we would do with our typical children. But how much farther should we go...how much harder should we push kids with developmental delays?

At what point does it rob them of their ability to be "normal" in their own context? Amanda writes often of liking herself just as she is, and wanting to be accepted just as she is; she doesn't require fixing.

We really must not forget the benefits of a good giggle fest on the floor of the living room, or a strawberry dipped in whipping cream just because it tastes good, not because it helps with oral motor skills.

We have to remember the joy of reading for the sake of reading, not just as an essential quest to allow our children independence. Bubbles in the bathtub are just as beneficial when they are fun and silly and making Santa beards as they are when they are part of speech therapy.

And while we are at it, we need to give ourselves a break about being perfect parents. Because you know what? Perfect parents of perfect children have kids that have temper tantrums in the mall, and cry over nothing sometimes, and strike another child because she has his toy.

In the video on Oprah, one parent worried about her son's "inappropriate touching" of strangers. He liked to hug people. Imagine the horror!!! Imagine how bad it would be if we got 50 hugs a day instead of two or three? Imagine when a teenager with autism claps his hands excitedly and cheers because he recognizes a song he loves?

I'm starting a campaign - I'll be that person who welcomes the inappropriate behavior of a person with autism or T21. If there's a song on the radio that requires a dance, I'll stop and dance - if someone wants to hug me, I'll take 10 or 15 seconds out of my day to receive and return that hug. If someone wants to teach me a tune that consists of a few repetitive syllables, I'll be happy to sing along.

In the meantime, for all of those people who try to train our kids out of inappropriate behavior who might be worried about job security, I've got a few suggestions for you...

Maybe you can work on the person who cuts me off on the highway and flips me the bird. Or who stands 10 feet outside the front door of a building and smokes at me. Or waits on me in the grocery store without so much as a kind word, or an acknowledgement of my presence. Or who stops and stares at me when I share a full body hug with Paige, that involves wrapping not only arms, but legs around my body and saying, "I love" over and over again. Or the one who swears at her child in Walmart out of frustration.

Maybe everyone needs to work on appropriate behavior sometimes.

7 comments:

Camille said...

I now let Emma lead me to the choices I make for her. Activities, learning aid choices, new words... She's the boss. And I don't really think about where it will lead her to. We enjoy the moment. And where is it written that hugs are inappropriate? Maybe if people hugged more and responded to Emma's HI!!!, this world would be a better place!!!

Tara Marie said...

Oh Betsy....this post...this is the post.

I am one of those Mothers...the Mother who said 'NO, Thank you'. We will raise our daughter without all all the focus on 'fixing her'. I am the odd-man out....and I must confess....sometimes that feels a little wierd, as I do know that [and I've had it said to me by a few professionals that we said 'no thankyou' to, tell me that I was depriving my child by not accepting all the therapies'

But my main goal for Emma Sage is that she lives her life...loves her life and I will do everything and anything to make sure she recieves all of the opportnities that will assit her in growing to be the best possible person she possibly can be, without a focus of trying to fix her and make her 'normal'

And for hugs. She is a hugger. She is learning to take clues from others, but you will find her giving and getting hugs from almost everyone she meets. [and there has been so many times that I see a person change for the positive right in front of me....after this little girl breaks the ice with a hug or a high five!]

I think hugging is a beautiful thing.....

and I just loved this Post Betsy.....thank you!!!!

Shannon said...

Great post Betsy! I think the hugging is one of my favorite things about Gabi. Also, Michelle wrote an awesome post today, too, about Normalcy. http://mdbeau.blogspot.com/2007/08/hope-and-normalcy-part-2.html

Nicole said...

"Is it fair for us to strive so much to bring our kids closer to "normal"? Or is it simply our desire to have them be more "normal?"

This is a profound statement. I am not a mother, nor will I ever be. I am a caretaker of a gorgeous little girl with DS and I too have come to realize that while there may be nothing I can do to make her "normal," she IS "her normal" She is where she may always be and that is a beautiful young child. All we need to do is fight the leukemia!!!! The DS is just a part of who she is and who she always will be. I think her parents, and even myself, have been guilty of trying to make her be someone she is not, nor never will be. Doing that also ignores the beauty of who she is.
Your kids are goregous BTW!

Thanks for your blog, you've taught me a lot.
Nicole

Mom to Rhett said...

You know with the whole hugging thing, it really hit home. Dakota who is my 12 year old son, he has asperger's syndrome.....he is a natural born hugger.

It makes me so sad when he goes to give a friend a hug, and they look at him funny. Some have even gone as far to say, "What are you gay?"

12 is a hard age. We are a very huggy family. There isn't a day that goes by that I don't hug my kids at least 5 times a day and tell them I love them.

At first I thought I had done something wrong, not teaching my boys to be....I don't know the word I am looking for...withdrawn? masculine? Who knows....but after reading this, I realize that Dakota's love is the way all of us should be.

What is wrong with hugging someone? I hug people all of the time. Why is it okay for girls to do it, and not boys?

I don't want to change my son, I just want him to take cues from others so that he knows when it is okay with THEM. I guess. I don't know I will have to ponder that one.

Nicole said...

Right on Betsy, thanks for sharing and teaching. Love you honey!

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