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Monday, April 29, 2013

My Autistic World

Every April I wonder if I should share my own story, my own journey with Autism or if I should keep the story of my life and the struggles I have faced with my oldest son quiet.

Typically I hide in the shadows. It is where I am most comfortable being. Today, I want to welcome you into my world. I want to share with you not what it is like to teach a child with Autism but rather to parent one.

Think, Wonder & Teach

Kris was born a healthy baby. I was considered a high-risk pregnancy because I had previous lost a child but he was born at 36 weeks and almost 9 lbs. I took him home from the hospital 18 hours after he was born and that was when the trouble began.

I couldn’t get him to stop crying. I rocked him, I feed him, I changed him, I called the doctor, the nurse, the hospital… everyone told me I was just being an over concerned parent. Add in postpartum depression and I was a mess.

Think, Wonder, & Teach - Autism Awareness
Fast forward, I wasn’t crazy. I finally realized that there was an okay zone with my son. I couldn’t cuddle him. He had one of those baby gyms that was cloth on the bottom so you could wash it. I took giant foam squares and built a pattern around it. If you sat at the edge he was content. He liked it… move and the screaming would begin.

He hated baby food, denim, bright lights, loud noises, touching of any sort, his diaper even thinking of being wet… He walked before he crawled. I found an amazing pediatrician who told me I wasn’t crazy.

Having a child with Autism requires a whole new set of parenting skills. Just when you think you have it figured out… he enters a new phase. After the screaming, don’t touch me phase, there was the out-of-control rage phase, the perfectionist phase, the literal phase, the stupid-phase, the self-doubt phase, and I know there is more to come.prepared me for the world of Autism.

My son has Asperger’s… it means that he looks normal, he excels academically but he struggles with so many things. Each year, I spend countless hours explaining to teachers how my child is different. I am blessed to that as we go through phases my child has been able to adapt and overcome.

Many cannot.

For example, my nephew is Autistic. In every since of the word. I searched for hours to find a picture of him only to realize we don’t have any. Probably because we are constantly chasing after him to keep him safe. He cannot communicate. He is locked inside his own world. He and his family is isolated. They can’t go on family vacations or even to the movies as a family.

Michael couldn't handle it. 

He wears a shirt that says “I am autistic. If found, please call….” He is very good at getting away from his caretakers. He will never be able to live on his own.
Think, Wonder, & Teach - Autism Awareness
April is Autism awareness month. Its a month when people donate to the cause to find a cure. Walks are help, a lot of articles are written in newspapers, people talk, and then they forget.

Autism does not define who I am or who my son is. It shouldn't define who anyone is. We are each unique in our own ways. Those who live with Autism will tell you that it has made us stronger, more patient, and perhaps more grateful for the small blessings each day.

As April comes to a close….
I ask you not to forget.



At April 30, 2013 at 8:33 AM , Blogger Shawna said...

Thank you for sharing your story, you sound like an amazing mother and your son sounds wonderful! I have many friends that have children with different levels of autism, and it never ceases to amaze me what incredible individuals each and every one of them are - parents and kids.

You are right, April is over but they, and you, are never forgotten.

The Picture Book Teacher's Edition

At April 30, 2013 at 11:13 AM , Blogger Heather said...

Thank you for sharing your story. I had my first severely autistic student this year and he was a challenge. He moved away and then we went to a Special Olympics competition and a student was screaming and running from his mother (not our ex student) and one of my students said,"That kid must be autistic just like *****. I sure miss him." He left a lasting impression on all of us and we really do miss him. Your nephew's shirt would have been perfect for him. Thanks again for your story, Heather

At April 30, 2013 at 2:11 PM , Blogger Lucy Ravitch said...

Thanks for sharing your story. I have five kids and they are all so different, but it is true I wouldn't know exactly what you are going through. You are a trooper, though. I know we only grow when we are pushed to our capacity and sometimes more than we think we can handle. It sounds like you are doing an amazing job.
Kids Math Teacher


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