Autism Awareness Month

April is Autism Awareness Month. Though I feel that everyday should be autism awareness day, at least we can devote this time to bringing knowledge to people who still don't know what autism is. I feel that the majority of people now have had a glimpse into autism, yet the understanding and acceptance of this disorder is far from what it should be. There are many cynics out there who believe it is only a way for people to get money, those whom believe that it is the fault of parents. Neither of these are true, and if those people lived for one day in my shoes, or my son's shoes, or my husbands, my other son, or my extended family, they would view autism as a very real disorder, and one deserving of attention.

Here is a link to a very general overview about what autism is. However, what is written on paper and what families deal with on a daily basis are two very different things. Still, it gives a general idea about what surrounds autism.

Living with autism is something of which I have not yet come completely to terms with. Since my son's first behavior challenges when he was 2, to his disgnosis when he was 8, to the major struggles we face today when he is 14, I'm still evolving in this processing of autism.

Fourteen years ago, I held my newly born son, feeling the love flow through me as I first looked at his perfect, beautiful face. Thirteen years ago, when other mommas heard their babies first call them mama, I was still waiting to hear that word I longed to hear. Twelve years ago, when my son could outwit any lock and be gone in the blink of an eye, I thought he was just quicker than most kids, more skillfull. Eleven years ago, I was worried that my son was deaf and took him for his first hearing exam, only to be told his hearing was perfectly fine and his skills were on level for other children his age. Ten years ago, when my son was kicked out of his daycare for disturbing behaviors, I knew something was a little different, but held onto the hope that what everyone told me was true: He's just being a boy. He'll grow out of that. There's nothing wrong with him. Nine years ago, my son moved to Europe and mastered spaeking Dutch more quickly than any of the other children, and was mainstreamed into the regular classroom in place of the language classroom. Within two months, I was being called daily for problems. Eight years ago, my son would escape out his bedroom window and take off on his bike until all hours of the night as we frantically searched streets and alleyways calling his name, our little six-year-old gone again. Seven years ago, smearing was a daily ritual and no furniture, walls, or clothing was safe. We should have bought stock in Lysol. This was also the year he was diagnosed with ADHD and started on ritalin. Six years ago, my son was tested again and again, given play therapy, psychology exams, IQ tests, etc. He was in a regular classroom in our local school, but I was called daily about issues he was having, frequently of sexual nature. He had friends and playdates but was beginning to retreat into his own world more and more. Five years ago we moved to Belgium and Kaeden was placed in a special education program. Though the class was small, he continued to have difficulties fighting with other kids. Four years ago, we chose to move my son into a special school program for children with autism. He seemed to thrive here, but at home his aggression grew to the point that I was holding him in bear-hugs on a daily basis until he could calm down. Three years ago, Kaeden's verbal abuse began rearing it's ugly head. Words I had never uttered were being thrown in my face on a daily basis. His mattress found it's way downstairs more often than I could count as it was thrown down the steps in fits of fury. Two years ago, more doctors, psychologists, psychiatrists, counselors, government officials, teachers, became a lifestyle for me. The number of appointments we attended trying to help Kaeden get his fury under control was mind-boggling. My husband used vacation days to be my support during these meetings. Last year Kaeden was placed in an institution to try to understand his rages, try new medication, think up new plans to help him achieve success both at home and in school. This year, year 14, he's only become more dangerous, his fury resulting in physical abuse. This year, I called the police for protection from my son. This year he has been suspended from school. This year, he has been suspended from the bus. This year, autism is controlling all of us, and we have lost every ounce of control we had against it. This year, my patience with my son is waning. This year, I am finally realizing that my son needs more help than I am able to offer him, that my love for him is not enough. This year, I am truly fearful for what the future will bring.

I am a mother. My job as a mother is to help my children reach adulthood, to be productive and happy men. Autism has changed my job from simply disciplining, playing, and loving into a full-time battle. The days of seeing my sons smile and knowing everything will be okay, even if just for that day, are over. His smile comes less often, his vacant eyes stare back at me more often. He has no self control. He has no sense of right and wrong. Autism controls him. Our counselors and teachers and psychaitrists are all at a loss where to go from here. These are the professionals. As his mother, my hope is being clouded by daily calls from the school, explosive outbursts resulting in either a bruised ego or body at teh end of each day. My husband has come to the end of his acceptance, his patience with our son completely vanished, his faith in our child and his future success reverted to waiting for that magical age of 18 when he's no longer our 'burden'. My little guy, though taunting his big brother to anger, receives his fair share of slaps and kicks, and reverts to his sweet self only when Kaeden is not in our presence. And Kaeden himself, there are no words...he is my son, my little boy, and my love is not enough to help him find peace from within.

Autism Awareness Month. For us, it's nothing special. For you, it's a chacne to understand, to become knowledgeable about something which may not directly affect you, but indirectly affects us all. Affects society and the future of our world. Affects your tax dollars and health plan. Affects your safety. Please learn about autism. Try to be the one that makes a difference. Even a smile at a mother as her son shows a meltdown in the grocery store is a reassuring difference that you have the power to make. It's Autism Awareness Month. Do something about it.


Tanya @ Teenautism said...

Tera, thank you for writing this post, for putting your story out there. People need to know what it's really like. A coworker of mine asked me about Nigel last week: "So does he just not have any social skills?" I was so taken aback that it took me several seconds before I could formulate a response. I finally stammered, "Autism is a lot more than just lacking social skills." Here's to better awareness!

Alison said...

thank you Tera for sharing your story, I am speechless right now but my heart is full of love and hope for you and your family.