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Today is Autism Awareness Day. Many parents of children with a diagnosis of autism won't be aware of this special day, set aside to bring to light the widespread instances, and growing, of autism diagnoses in America, and to help everyone understand the medical, social, financial, and educational challenges these families face.
I don't need CNN to tell me. My family has experienced an autism diagnosis, along with PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified) and a progressive hearing loss, for nearly thirty years. My son has this diagnosis. For the purposes of this article, I will call him "Todd." That's not his real name. His last name is different than mine, but I still feel compelled to go to extra steps to protect his privacy, and his vulnerability.
That's the first thing you learn when you have a child with profound special needs: vulnerability. Of your child, of yourself, your other children, your financial future, your health, and your dreams and hopes. One of the best books I've read is titled "You Will Dream New Dreams." It is so true, but it takes a while to get there.
I'm old enough now to look back about as much as I look forward; and I'm not as terrified as I used to be. I am also old enough to be honest about what it took to raise this child; what we lost and what we gained.
This article © 2008 by Janice Phelps Williams, Author of "Open Your Heart with Pets: Mastering Life through Love of Animals" (DreamTime Publishing, 2007). All rights reserved.
CNN is featuring photos of autistic children and their families today. Most of them are smiling. See the autistic child integrated into the family. "Autism is a World."
My son, now almost 27 years old, is verbal, very verbal. He's a big bear of a "kid" who talks loud, needs constant attention unless he is involved in a perseverative behavior like creating collages, stringing beads, making a present for his girlfriend, or designing a new Monopoly game.
He's lived in a nursing home for six years now. That sounds awful, but it's not, really. There are guys his age around him all the time, albeit some lower functioning ones, and staff to listen to him, and regular activities--all within a structured environment. I wish he could live in a group home, but there is no appropriate place available for him in the state where I live. He has medical needs which require the nursing home care; needs and conditions and illnesses that are "less than" the main diagnosis, but you'd be surprised at how important they can become. A family with a "normal" child would find just one of these challenges a lot to take.
We're trying to get him into a sheltered workshop, but that is not as easy or available as one might think. Nothing is in raising a special needs child. And nothing prepares you for it.
Underneath the optimism, the can-do attitude, the bravery, the fundraisers, one might find a mother (and hopefully a father ) and likely a few siblings overcome with exhaustion, scared out of their wits at the future, and fighting the temptation to give up, whatever that might mean to them. Everyday, though, they start again. And, some of them have more than one child with autism. Some of them are foster parents or have adopted autistic children. These parents are real heroes. They measure progress, and love, and happiness with a different yardstick than others.
Caring for a child with profound needs involves a lot of things that no one wants to talk about. Feces spread on the walls; head banging on a tile floor; locks on all cabinets and windows; alarms on the doors to prevent night-time "escapes"; exposing of one's privates in public; loud talking and stares of strangers; forgoing visits to restaurants; dates with a spouse; relationships and marriages and neighborhood sports teams and money in the bank and never having friends who don't feel sorry for you.
A high-functioning child with profound and pervasive mental disorders can bring a parent into the legal system, the criminal justice system, the courts, the jails, and the fear of what others might do to your child. It can also bring into your life the fear of what your child, now stronger, taller, and less inhibited than anyone else in the family, might do to you.
In my case, I did not sleep through the night until Todd was 11 years old and went into institutional care for the first time. Most parents can't wait until their baby sleeps through the night. When your "baby" is old enough to climb on kitchen countertops at night, start the car, urinate on the floor, climb out a window, you are robbed of the peace of a good night's rest; and no one really understands the depth of your fatigue. This can lead to chronic illnesses in the parent, and can affect job performance, career plans, the romantic life of a couple, so many things...
Two decades ago, there was much less known about autism. It surprises me though the conversations and challenges still going on today. Funding issues. Insurance issues. A lack of understanding.
I suppose I should tie this in with pets, after all this is a blog about pets...
Pets have played an important role in the life of my autistic son. Their acceptance, love, tactile qualities... their forgiveness, the coordination holding them requires, the empathy caring for a pet can encourage.... all have played a role in the person my son is today: a disabled guy, yes, but also a person who can love, who can feel, who can converse, who can (better than in the past) wait, who can see things from someone else's point of view, even when that someone walks on four paws. The right pet for a special needs kid is an important component. Just make sure it is the right pet at the right time.
Our family lived through Todd's attempt to shave his hamsters (hamsters-out). The corn snake involved eating mice which didn't seem right given his aggressive tendencies (snake-out). The aquarium was a good thing. So was a big fluffy mutt, 50 lbs, very tame. That fluffy mutt was Todd's ONLY friend, other than his very patient younger brother. At night, the dog stayed on his bed until he was asleep, then would walk out to the living room and look at me, as if to say, "my job is done." Subsequently, two other dogs came into our family, who held special meaning and assistance for Todd. With each dog, he learned that someone else could love him.
For the parent of an autistic child, the job is never done. Ever. Giving up is not an option. And in that lack of option, you find more strength and hope and resilience than you might have thought was in you.
To those with young children with special needs, I would like to say the following:
It can get better. Sometimes it gets worse before it gets better, but overall, I've found the aging process to help. Some things do pass away with time. New challenges arise, but you'll be stronger and more experienced, so they will not feel as hard as the challenges at the beginning. New medicines will help. New friends will understand. New funding and research and teaching methods.... everything in the future will be better than now... particularly if now involves a child age 9 – 18 who is just about driving you crazy.
Read books by other parents. My publishing company, Lucky Press, was proud to publish "My Sad Is All Gone" by Thelma Wheatley, the first Canadian parent of an autistic child to publish a book. You can purchase it at Amazon. Thelma shares her experiences with the educational system in Canada; and as a teacher herself has a lot of good advice to offer.
So, today, I salute the parents who love the children who are different. Who don't fit in. Who never will fit in.
Years ago I made a promise to my child "There is a place for you in this world, and I will help you find it." I renew that promise every day, with each small loving step I can find it in myself to take--steps made possible by the love and support of everyone in my family. Together, we have found a happy life for ourselves and this unique child. We dreamed new dreams, and who's to say our dreams are not worthwhile?
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Posted by kimamalek at 4/3/08 9:58 a.m.
I think it is wonderful that Autism is finally getting the attention that is necessary. Your story is incredible and really inspiring. I was reading about Autism Service Dogs recently on Trusera. Curious if anyone has heard about this program: http://www.trusera.com/users/epowell/stories/autism-service-dogs