On raising an autistic child: My son is special, and I love him just the way he is

Please take a moment to read this touching guest post by Rebecca Boucher about the everyday challenges and triumphs involved with raising an autistic child. This is a continuation of the Autism Awareness Giveaway Hop. Over 75 blogs are running giveaways and blogging about autism in order to spread awareness. I’m giving away a paperback copy of Mark Haddon’s Curious Incident of the Dog in the Night-Time, which you can enter to win here.

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The Centers for Disease Control and Prevention (CDC) updated its estimate of autism prevalence in the United States to 1 in 88 children (1 in 54 boys and 1 in 252 girls.) By comparison, this is more children than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, andMDS combined. My son is one of these children. At age 6 he was diagnosed with PDD/NOD (pervasive developmental disorder-not otherwise specified) as well as ADHD and bipolar disorder. A lot of people wonder what it means to be on the Autistic spectrum. Autism Speaks defines it best:

“Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently. About 25 percent of individuals with ASD are nonverbal but can learn to communicate using other means.”

But what does this diagnosis mean on a personal level? In our case it means managing a child who looks well on the outside but deals with all kinds of hidden limits. He is loving, caring and full of life. He also is impulsive and easy to anger, finds it hard to maintain friendships, and at some times can distort reality. Even though he is in a mainstream classroom, he is taken out up to three hours a day to help him learn at his own rate. In the third grade he is just reading on a first grade level. But if you tell him things verbally he is a little sponge that can knock your socks off with knowledge. If he finds something he likes, watch out. You will know more about it than you ever wanted to know.

It means at times seeing him withdraw from family and friends and retreat to his own world. Often he deals with over-stimulation this way. You will hear him talking to himself in his room, making sense of his day by playing it over word for word to himself.

It means trips to the therapist, trips to the social worker, and large medicine co-pays. It means constant watching so he won’t wander off and follow an older kid into some unknown danger. (He loves older kids and attention, a recipe for disaster sometimes.) It means dealing with state aid and fighting for programs. It means protecting his trusting nature and healing his fragile emotions.

It also means watching him with pride when he achieves. Seeing him love and care for his cow–a 4H project and his source of comfort. It’s watching him find joy in things that I forget to see and that other nine-year-old boys might not, such as a flower petal floating down the stream or the different sounds the cows make in the field. It’s watching his face light up when something clicks. And how I love to hear his little voice when he says “Mom, come quick, look at this….” His interests are varied, from cows, to tractors, to wrestling.

It means helping his older brother understand the outbursts and trying to understand how his brother is feeling. At eleven it is hard for him to understand that his brother cannot control some of the things he says or control his body sometimes. It’s helping him understand the people who look funny at his brother in the store when a nine-year-old wants an Elmo video (and when a few aisles over the same nine-year-old was begging for a BB gun.) It means stress and joy and limits and constant surprises. It means worrying about the future and celebrating today.

Our road to diagnosis was long and filled with many obstacles. It hurts to know your child is struggling and not be able to make it go away. We were blessed with a wonderful pediatrician who never pushed off my concerns. He was able to point me in the direction of services that were able to properly diagnosis and treat him. The school district was a tad harder to work with. In the end it was a collaboration of all parties that led to the plan he is on today.

Try and educate yourself on Autism. The myths are many. My child can show emotion and love, he can look you in the eye at times, and he tries so hard to fit in. Pay a little more attention and not be so quick to judge parents when you don’t know the situation. I’m sorry when my son has an outburst in a restaurant or store. I really am. I try to predict them and head them off, but sometimes you can’t. A little patience goes a long way. You never know what people are dealing with.

The way to understanding is education. Funding for research and developmental programs is dying out at both the federal and state levels. My state is battling legislation that will keep funding alive–the funding that will keep programs not only for people on the autistic spectrum but also for all those with developmental disabilities. When we cut programs and services, it affects families at all levels. Programs help children, and adults find their niche and help them succeed. And in the long run, they save money that can be earmarked right back into the same services.

I have met some amazing people, some who have become great friends, on this journey. They are kindred spirits who have helped me see the brightness the future can hold. And I want to thank them all. I have seen kids like my son reach their teen years and thrive in vocational schools where they can nurture their special interests.

So what does Autism mean to me? It means I would never change my son or trade one single step on this journey, even in my darkest, most stressful hour. My son is special, and I love him just the way he is.

About this post’s author: Rebecca Boucher is a 36-year-old mother of two boys, ages 9 and 11. Her youngest is diagnosed with ADHD/Aspergers and bi-polar disorder. She lives in a quiet, typical New England town in the heart of Massachusetts. Besides trying to start a freelance writing career, working on her novel, and blogging, she works part time and does a lot of volunteer work. The organization closest to her heart is 4H. You can find her on her blog, My Life With Boys and Books.

Mrs. Storm

Writing everything from Sweet Romance to Children's Books to Nonfiction, Melissa loves books, birds, and bonbons--in that order. She has an advanced degree that she never uses.

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