From Denial to Acceptance: Life on the Autism Spectrum (Part 2)

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1 in 54 boys are on the autism spectrum and my son is that one. As a parent, Angel’s  autism diagnosis broke my heart yet it explained so much. It explained his speech delay. It explained why he loved lining up of toys in a row. It explained the head banging (yes, Angel bangs his head now when he is upset).  It explained the constant seeking of sensory stimulation, limited expressive language, hyperactivity, and why Angel is still in pull ups with little interest in being potty trained.

When I got his progress reports in Fall 2011, my mom advised me to look up developmental pediatricians. During my search, I found a remarkable special-needs advocate, Sarah Birnbaum. With Sarah’s guidance, we decided to have a neuro-psychological evaluation done instead. The appointments were interesting but that is for another blog post. I remember I was out of town when Angel’s dad took him to his last appointment with the neuro-psychologist. At the end of the appointment, he called me and I immediately asked how the appointment went. He replied, “Oh, the doctor thinks Angel may be on the spectrum.”

My heart dropped to the floor. He said it as if he was telling me that Angel had a cold. I am not sure if he fully understood the ramifications of what he was saying. I do not remember anything that I heard after that. I asked some questions… I think. Then, I hung up and the tears began to flow. I cried my eyes out that day.

When we got Angel’s diagnosis, I started wondering if it had been caused by something I ate during pregnancy. Then, I remembered that I was the “model pregnant lady.” At least, I thought so. I did not drink alcohol and I avoided second-hand smoke as much as humanly possible in New York City. I worked out, took my prenatal vitamins daily, and I ate healthful foods. I also avoided chemicals as much as I could. I was the pregnant lady who won’t even wear nail polish to avoid chemicals and harmful fumes.

I know that there is no definite cause for autism. During Autism Awareness Month, I read about the many possible causes. They include: maternal obesity, paternal age, vaccines, food, and the environment. The reality is we still do not know for sure. Yet, I still wondered, if it was something that I did.
I remember crying night after night. I grieved because I knew that my son’s life path will not be the same as typical children his age. I also listened to others trying to comfort me by telling me that everything will be okay. How did they know? I didn’t even know.

With this reality of autism in our lives, comes a new appreciation for everything Angel does.
If he puts on his socks, we tell him good job.
If he uses his spoon to eat instead of grabbing food with his hands, we encourage him.
If he sits on the potty, even if it is for 15 seconds, we praise him.
If he tells me to be quiet when I scold him, I smile.
Why? Because when you have a child with significant a speech delay, EVERY word is precious. Even the naughty ones.

A few weeks ago, I went to pick Angel up from school to take him to speech therapy. As soon as he spotted me, he ran toward me and yelled “Mommy!” He had never called me Mommy, spontaneously, before. I was thrilled and proud. The tears came and my heart swelled big enough to love him even more.

At this point in our lives, I have become “Angel’s” biggest advocate. I am also joined by a great team of people who love him and care for him. My team includes: Angel’s dad, his grandparents, our family and friends, teachers, therapists, our advocate, and doctors.

No more will I listen to anyone telling me to wait and see. I refuse to wait and see when Angel can be getting the help that he desperately needs now. As we navigate this world of autism, I pray for the strength to continue to help him develop into the young man that God means for him to be.

How did you feel when you found out that your child is on the autism spectrum? What was at the top of your to-do list? How supportive were the people around you?

I look forward to hearing from you.

Sincerely,

Miz Kp