Friday, January 22, 2010

Innocent Bystander

I have one child with autism and one child who thinks he does.
In my field of work as an Antepartum nurse, we will occasionally see a mom pregnant with a set of twins. One twin is severely "ill" and one twin is doing just fine. She's at a gestation where if we deliver now, both babies have a chance of survival, however, we are subjecting that healthy twin to a premature delivery and all the consequences that go with it. If we choose not to deliver, the sick twin will surely die and the healthy twin has a chance to remain in utero and deliver at term. Some choice. It's one that I pray I never have to make.
In some ways, I can relate. We have a difficult life at the moment. M has therapy 33 hours per week in our home and he also goes to half day of school. That means 3 hours of therapy in the morning, school for 3 hours, and 2-3 hours of therapy after school. This goes on 6 days a week, my friend. It's been like this for a year now. The year before, we financed to provide 12 hours per week of therapy and of course, half days of school.
C misses out on all the playdates, outings, and extra's that come along with having a mom who doesn't work during the weekdays. There is no museums, play galleries, or zoo for us. There is an occasional playdate here at our home, but everyone will always have to come to us, for we cannot return the visit. Living in the country does not help our situation. We can't walk out our door and run into other families to socialize with. For now, we live vicariously through our firends and aunties. That's ok. We know the sacrifice we make for M as a family will reward us later. C doesn't know any better. This is the only life he knows. Admittedly, it is more my problem of feeling like a caged animal and wishing to give him the opportunities that other children his age can have. He is the innocent bystander.
All these things I can deal with. I know that our situation will change in time. I just have to be patient.
The more difficult thing is that M and C are each other's only consistent playmates. M's mannerisms, perseverating, tantrums, and play style are quite different than those of a NT (neurotypical) child. M also has a lot of anxiety and rigidness. C's only exposure is to his autistic brother. So he picks up on all those not-so-admirable behaviors. The innocent bystander.
Some days it feels like I have two autistic children. This year C attends preschool two mornings a week which is his only saving grace. I can hardly wait until he can go to 4K where I can see him blossom into what he's really going to be.
The innocent bystander no longer.

Monday, January 18, 2010

Do trees fly?

"Do trees fly?" M asks and bursts into contagious giggles. "No, silly!" I say and tickle him all over. This is a game we play. A game he invented by modifying one of his programs from therapy. This particular game has stuck with him since the beginning of therapy. We are the lucky ones, our M is quite affectionate and loving. He loves to be hugged and cuddled, tickled and wrestled with. What we call a "sensory craver". He is often seeing slouching in chairs, draped over furniture, or bouncing on various items-like the dog. His autistic brain is wired in such a way that he needs that extra contact to "feel" things. Works to our advantage, I admit, for I cannot imagine parenting M if he couldn't stand me touching him, the way some autistic children do. I see this as one of his many, under-appreciated gifts. M knows the details of everything- especially how things look and feel. He memorizes the flower petals or the wings of an insect. He takes the time and pays attention to the important stuff. Even better is that HE defines what is the important stuff. M lives and does for himself-as most children do. I just hope he doesn't lose it as some of us do. We learn the written and unwritten rules of society. M will learn these, too, but somehow I believe his autism will keep him from succumbing to them. M teaches me far more than I teach him.
So for now, when M asks me "Do trees fly?", I'll tell him "They can if you want them to."

Friday, January 15, 2010

Stigmas and "Ass-burgers"

We all know about the weird kid. The one you don't want to be grouped with in class. The one you steer clear of in the hallway. I know because I avoided them too. I never bullied them but I never befriended them, either. They were not like me. Passive niceness? Guilty.

Perhaps my lesson in life is that now I am the parent. After diagnosis, I told my immediate family and close friends but asked that they not spread the word around. I naively thought that with therapy, M would be "cured". I am guilty of buying into that Autism stigma. After all, the only autistic person we all really knew is Rainman (Dustin Hoffman nailed it perfectly- I can say- something that has not been achieved before or since). We fear what we don't know. I cringe at "cured" now. Recovered, rehab'ed, remission, whatever you call it. M has a good prognosis because he is on the high function end of the spectrum. With adequate therapy he may be indistinguishable from his peers. He may be able to function independently in society. But he will always have autism. And I learned that's okay. We love him just for being M.
Knowing that doesn't make me stop worrying about M being the weird kid. The "ass burger",as some kids with the highest functioning Asperger's Syndrome, are labeled by classmates. Some may argue that people with ASD don't want or need friends because they are in their own world. Not true. His world may smell, taste, sound, and feel different but he still wants friends... he just doesn't know how.
Thankfully, M was born into an age of information and acceptance. I just need to change my knee-jerk response that he will be bullied or isolated. What M lacks in social skills, he has in aura. One student teacher who had worked with him for a semester said this about him, "M has something special about him that I can't describe. He has this insane ability to draw people in." I think it's also important to note that he is incredibly adorable which may be a big part of this ability, but hey, it's a good thing he has that on his side!
What's more, children have a great capacity to accept people that are different and learn about the things they don't understand. It's only as we enter into adulthood that we become rigid in our beliefs. Children that are incredibly cruel are usually cruel because of the prejudices and biases placed upon them by their parents.

Autism may not be the cause du jour, but I aim to make it one day. It's not scary, just different. Find out why.

I'll leave you with some names of people you know who may have been diagnosed with ASD under current diagnostic standards. (DISCLAIMER- I, under no circumstances, am diagnosing these people with ASD, only sharing that some behaviors and traits they exhibit COULD POSSIBLY place them on the spectrum had they been evaluated under current standards.)

Daryl Hannah, Woody Allen, Leonardo DaVinci, Vincent Van Gogh, Courtney Love (actually had a documented borderline diagnosis at age 3), Virginia Woolf, Albert Einstein, Bill Gates, Steven Speilberg and Jeffrey Dahmer.

Tuesday, January 12, 2010

There's Room in my Boat/ On Diagnosis Day

On diagnosis day...... my fears came true. My spinning world came to a sickening halt. My baby, diagnosed with Autism Spectrum Disorder, just barely three years old.
Our little family of four was traveling in a high speed jet towards our blissful future of endless opportunities.... Possibilities.
Then someone, something, some force beyond, pushed me and M out. No explanation, no "hold your breath now". Just a flash of light and wind. We were falling and the world stood still. I'm desperately clinging to M, trying to scream, but no noise escapes me. My dreams flash before my eyes.
The jet becomes a small speck in the sky. Before reason returns to me, M and I hit the water. A vast, turbulent ocean, no end in sight. Just M and I, battered by waves, the salt burning our wounds.
For two and a half years, we tread water in this ocean. Over time, we learn that this ocean is Autism. We don't understand how we got there, we don't understand how to get out. Some days it is calm and peaceful and some days it is turbulent and scary. And we tread water. We feel alone in this ocean.
From time to time, we can see our family in the distance. They look concerned but do not reach a hand to us. And we tread.
I am so tired already. I wonder if we will ever be free from this. There are days when I feel like giving up. Sink into the water and sway with the current. Watch the bubbles float up... listen to the muffled, comforting sound of the sea. Let the water fill me so that I can sink to the bottom and rest finally in the dark quiet.
But I look to my hand and see M's small hand in mine. I realize that if I drown, that M does too. And so we tread.
When life became unbearable, the ocean in hurricane, a boat arrived. Barely adequate in size but sturdy.
The angel inside looks ordinary. I somehow wonder what this person is doing out here alone. She smiles at me, takes my hand, and says "There's room in my boat."
In her smile I see peace. In her eyes I see patience and understanding. M and I are instantly aboard. The angel tells me she is from Wisconsin Early Autism Project. She will teach us how to swim and assures us that we will find the shore.
For the first time I breathe. From this point of view, the ocean is beautiful. Colorful, brilliant, and full of life. From this point of view I am not scared.
"This is where we live," I think to myself. For the first time, I am thankful for the detour our lives has taken. Had we stayed on the jet, we would not been able to appreciate the view we are witnessing now.
I know the boat will come and go. I am confident that M and I can swim as long as I know someone will come along and offer us a ride from time to time- so we can remember the beauty of the ocean.

And so this blog is born...... This is about life, raising a child with Autism Spectrum Disorder, successes and failures, and everything in between. There's room in my boat..... come and sit for a spell, take a rest. Let's have a shared moment and gaze at the beauty of the ocean together.