He struggles, but he's my hero

Jenipher


My 11 year old son, Emmett, is autistic. I love him the way he is. Let me repeat that - I love him the way he is. He struggles, but he's my hero. He is happy - most of the time (like any 11 year old boy)....he is affectionate, funny, and smart - in HIS own, special way. He has taught me and my husband so much about being loving, patient, and attentive parents to ALL of our four children.

Many parents of autistic children these days think that they can "cure" or "recover" their autistic child. I wouldn't change my son for the world. Wanting to "fix" him implies that he is ill, or sick, or broken, or lost....he is none of those -- he is who he is and if this is how GOD (or Fate) gave him to me, then it is not my place to attempt to change him so he can comply with societal norms.

Now, to cover my rear end....I must add the caveat that I do NOT criticize those who DO want to "cure" or "recover" their children....heck, I'd be lying if I said that I have never entertained that very same idea at one point or another throughout our struggles with Emmett. He had a genuine case of lead poisoning and he was chelated, I read Bernard Rimland and plied Emmett with B vitamins and Magnesium, I had tests done to see if he would benefit from a CFGF diet...those are just a few of the things I went through in the early years of his diagnosis....so, I've been there and back and I've arrived at my own conclusion: that Emmett should be enjoyed for who he is, how he is, AS HE IS.....

Unless you have a child with a significant disability, such as Autism....you will NEVER, EVER (not in a million years) be able to fully understand the heartache, the pain, the worry, the guilt, the sorrow, the helplessness, the frustration - the loss...that comes with the diagnosis and every day afterward. Nor will you possibly be able to experience the joy, the delight, the wonder, the pride, the amazement, or the triumph that entwines itself within your heart....it's a strong, powerful, and otherwise indescribable feeling that transcends mere parental affection....it is rooted in the depths of your soul....singing in your cells....allemanding in your atoms....dancing in your DNA.

Emmett will probably never be able to live on his own, he will be dependent on his family and other people for the rest of his life. He doesn't have any real friends, he has a very limited understanding of the concept. He doesn't get invited to birthday parties or sleepovers...or on play dates. No kids come knocking on our door wanting to know if Emmett can play. He'll never fall in love with a girl...or have a girl fall in love with him. He won't marry or have children. I'm not underestimating him...this is just how it will be. There is so much that he will never be able to do - things you and I have taken for granted...not just for ourselves, but for our children as well.

But Emmett is a happy boy. There is so much he CAN do. He is smart. He knows more about animals than an average zoologist....having memorized (in alphabetical order) not just the names of hundreds, or even thousands, of animals...but the scientific names (Latin), dictionary spellings, and habitat/diet/etc. He can sing songs from "Lion King" in over a dozen different languages. He writes movie screenplays, yes - entire movies (two so far). He has a beautiful singing voice. He can recite poems. He loves to help cook. He writes and illustrates incredible animal books. He gives big hugs and kisses. He holds my face in his hands and says "Mommy is so sweet". He has a strange sense of humor, very complex. He knows how to make us laugh.

On the other hand, we have our dark times....the days where he breaks windows (or throws glass things below the basement stairs - just to hear them break), throws himself down the stairs, bangs his head, screams, screeches, cries, hits me, hits Scot and hits anyone else who gets within striking distance....the days where he can't stop persevering about wanting to go to McDonald's, or the (Scholastic) Book Fair or whatever else he decides to go on and on about. The times when he tears apart his beloved books then wants us to tape them back together and cries when we can't fix them well enough. The times when I know something is wrong and he is so frustrated...but he doesn't have the words to help me understand. It breaks my heart when, after a particularly intense tantrum (which can last for HOURS), he comes to me, sniffling and gasping from crying so long, puts his arms around me and says, "I'm sorry Mommy - it's so hard."

It is so hard.

We don't know what caused Emmett's autism. I think it's a combination of genetics and environment. I think he was born with a genetic predisposition and a series of events...whether it was vaccines, an early fever and spinal tap, or lead poisoning....triggered his autism. Ultimately, it doesn't really matter....until someone can tell us for sure. Trying to find someone to blame for Emmett's autism is a waste of time and energy that could be better spent appreciating him for the gift that he is. Because, after all, he is like a gift - one that I get to open a little more every day.

Having a child with a disability can be such an overwhelming experience. It can build you up and make you stronger or it can destroy you. It all comes down to choice.

Last week, during the middle of a conversation with my advisees, one of my high school students asked how I could be such a happy person with everything that has happened to me over the course of my life. I really didn't have an answer. I'd never thought about it before....I mean, my life is complicated, my past is complicated (but not tragic), I am complicated. I love my life and all of it's imperfections and complications. I spent way too many years feeling sorry for myself, and horrible about myself....and Emmett's diagnosis was the event that became the catalyst for the eventual rebirth and awakening of a whole new me. I found strength that I never knew I had...I found a part of me that I never knew existed...I'm still finding, I'm still finding.

Although I am generally a happy person, I am not always so inclined....there have been days when the choice between slicing the onions for dinner and making a bloody mess of my forearms has been a difficult decision. Luckily, so far I've found more positives in the noble undertaking of onion-slicing. (I'd never hurt myself....so that is not a cry for help, I'm just making a point). Again, it's all about making choices......I could choose to wallow in self-pity, I could crawl under a rock and hide, I could run away, I could do nothing......

But I have made the choice to find joy and happiness in the most difficult of circumstances. I wake up every day and make the choice to embrace life and try to make the world a little better for those with whom I come in contact. I've made the choice to free myself from people who gossip, and hate, and are too weak-minded to find their own path. I don't bother with the people who try to drag me down...the people who always try to turn the conversations back around to make it about themselves - who always say "What about me? " I surround myself with people who make me feel good and with whom I feel I can reciprocate. I laugh....I choose to laugh.... I have to laugh.

I have a saying that I crafted as a sort of philosophy about Emmett..."I wouldn't change my son for the world, but I will change the world for my son." The world is a cruel enough place for everyone....and I want to make sure that, in some way, I leave it a better place...not just for Emmett - but for Ethan, Elijah, and Escher....for everyone. I'm not looking to make some miraculous change....just to be an instrument for change. I want other people to want the world to change. I want my students and my children to want the world to change badly enough to quit complaining and to do something about it.

Happiness can't be given to you. You have to make it for yourself. I have a lot of things about which I could be bitter....I have so many people whom I could blame for things in my life that are ultimately not their fault.....and it's not worth it. I own my life...the good and the bad.....I'm focusing on the good. It makes the hard days easier and the easy days brighter. I have so much for which to be thankful: an incredible husband of 14 years (and people still ask if we are newlyweds! ), four amazing children, a fine assembly of family and friends....you.

I guess I just wanted to share this part of myself with those of you who will read it. Emmett's autism is a huge part of my life, and I try to not let it consume me....if you have a kid like Emmett, you know what I mean. If you don't, well -- in some ways I feel sorry for you -- Emmett's a cool kid.

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