18: Sam

18: Sam

From Chicken Soup for the Soul: Raising Kids on the Spectrum

Sam

We have a voice if you’re willing to listen to us.

~Chase Johnson

Ever since I was a little girl there was nothing I wanted more than being a mother. After several miscarriages, I finally had my son. We named him Samuel, which in Hebrew means “to be heard.”

Sam was a baby who treated my insides like his own personal jungle gym, a toddler who repeatedly hid all of his Hot Wheels in the refrigerators, and a three-year-old who almost didn’t make it to four because he dumped his dad’s collection of 500 alphabetically organized CDs all over the floor.

As a baby, Sam didn’t make eye contact when nursing, and he was quite reactive to any sound. He fussed when there were too many people around him and cried if there were competing noises, like a TV and radio playing simultaneously. Everyone thought I was just a nervous new mother as I tried to shield him from these triggers, but I knew it was something else. I just didn’t know what.

In preschool his teachers had behavior charts to help regulate his impulses. He tried hard to sit in circle time without rearranging the weather charts. Unaware that Sam was reading independently, the teachers didn’t realize why he knocked over the bookcases, frustrated because he had read every book on the shelves. At the end of gym class, an expert in the routine, Sam would start picking up the purple rubber sitting spots because he knew the teacher was about to collect them. The problem was that the kids were still sitting on them.

Sensory Integration Disorder arrived when Sam was exactly eighteen months old. His fear of toothpaste, shampoo and lotion made mundane tasks a nightmare. Every day, I held Sam on my lap, facing forward, his legs wedged between my thighs, my left arm wrapped around his chest holding both of his arms tight, and pried his mouth open with an Elmo toothbrush. It’s amazing our neighbors never called the police, his screaming was that loud and lasted that long. He used the color blue exclusively until he was six. He only wore blue clothing, had a blue bedroom and when given a seventy-two pack of crayons, picked out the seven shades of blue and threw the rest away. His fear of paint meant that we were the only kindergarten parents who had a lovely blue outline of our child’s hand instead of the usual handprint.

When Sam was three, we hired a developmental pediatrician who shadowed him at home, school and on play dates for three days. Thousands of dollars and a seventeen-page report later, we learned the word autism.

No one is ever ready to hear that word and certainly, not everyone is willing to accept that diagnosis, as was our case. Sam’s father and I divorced two years later due to parenting differences. I thought that love, medication and therapy would change his behaviors. His dad felt stricter parenting was the answer. Neither of us was willing to compromise, so I took my kids and set out to follow all of the instructions the diagnosing pediatrician had given me.

We tackled every issue as it arose, with therapies, specialists and medications. His perseverations shifted from blue to baseball. By fifth grade, Sam knew the entire history of baseball back to the 1800s. It was at that time he decided to surreptitiously read books about baseball under his desk rather than listen to the teacher. After all, as he pointed out to one, they were using outdated maps and he couldn’t be expected to learn from those old things. Social skills training began the next day.

Sam’s hand was always raised in class and his teachers loved him because of his enthusiasm for learning, to say nothing of his innate intelligence. I think they also enjoyed that he not only provided definitions on vocabulary tests, but illustrations as well. He had an intense drawing perseveration that was now in full swing.

Eventually, Sam adjusted to school life and we got him to lower his hand as well as the height at which he wore his pants. It only took a year of CBT to get his belt buckle loosened so his pants weren’t up in his armpits!

Sam worked hard at making friends, being more typical and learning the differences between being serious and sarcastic. We role-played a lot, practicing give and take conversations. He now realizes that though he can recite every fact about baseball, not everyone wants to hear those facts.

Never once did Sam question my strategies. When he was twelve, when many kids are calling their parents idiots, he said to me, “You always do what’s best for me.” The few times he disagreed and I had to summon help from his dad, Sam listened, knowing that his dad always wanted the very best for him too; and due to their mutual love of baseball and debate, he and his dad formed a bond that I know will never break.

Over the years Sam has worked hard to see outside his world. He was a little boy who gave away his racecar bed to a child he didn’t know, but heard had no bed; a boy who, in Israel, packed boxes of food for the hungry, even though he was starving due to an intense dislike of hummus; and a teen who is the first to say hello and the last to back down.

Sam is now fifteen and has made more transitions than most people make in a lifetime. Some have been made with confidence and aplomb and some, more recently, have set him back years. He has adjusted to many moves, living in three different states and changing schools. He has been bullied and befriended. He has accepted a plethora of unexpected change and has experienced some extraordinarily painful losses.

The doctors who told me there was nothing we could do — they should see Sam now.

The therapists who said that’s all they could do — they should see Sam now.

The teachers who refused to see past his issues — they should see Sam now.

The kids who didn’t “get” him — they should see Sam now.

They couldn’t see what we always saw — a gentle, sweet, kind, loving boy who just wanted to be accepted for who he was — a perfectly great kid.

Sam now speaks nationally about his Asperger’s, with hopes of raising awareness so it will lead to tolerance, patience and friendship. His message is that Aspies make very good friends because they know what a gift a good friend can be.

I already know what a gift he is as my son.

~Allison Hermann Craigie

More stories from our partners