penandpatience

WRITERS WORDS:  “We may not be able to prepare the future for our children, but we can at least prepare our children for the future.” –Franklin D. Roosevelt

APRIL 2017 MONTHLY MUSING

NICKOLAS & ME

     When I sat down to write the Musing, I recalled April was National Autism Month and Autism, a disorder not entirely understood, has touched our family like so many others. It’s often difficult to grasp 1 in 88 children are on the autism spectrum, including 1 in 54 for boys. I’m an experienced grandmother. I’ve been blessed with eight grandchildren—5 girls and 3 boys. The oldest grandchild is twenty-six, the youngest age six. Each one is special in their unique way, but Nicholas, now age eight, is special in a manner different from the others. And so it’s my pleasure to introduce you to my special grandson—Nicholas.

When Nicky was two years old he didn’t speak. After a visit to a New York physician, he was diagnosed on the autism spectrum. The words “non-verbal” hit our hearts like a lightning bolt. Despite this new heartache, Nicholas’s family set out on a path to protect, nurture and provide the necessary assistance to help him succeed. We spent hours getting information from online sites leaving no stone unturned. Fortunately, he resided in New York State and was able to have intervention therapy during that early period. However, when the family made a necessary move to a southern state, the services dried up like stale prunes. His mother and I became warriors on his behalf and, in many ways, we, like many other parents/grandparents are still at war. (see postscript)

Photos were pasted all over the refrigerator including a water glass, foods and pertinent household items. Over time and direction, Nicky pointed to what he needed or wanted. He became and still is a whiz on an I-pad, and over the next few years, Nicky began to speak and put words coherently together. Today, Nicky is more verbal and a smart little guy with a strong desire to learn. However, his worst enemy is his hyperactivity and inability to sit still for any length of time. He has been and remains fascinated with how toys and household items are put together and what makes them work.  Light bulbs are unscrewed from lamps and many toys and household items have been reduced to a pile of parts and pieces (enough to drive the sanest parent insane) with his favorite screwdriver. For a time he was fascinated with the dishwasher and thankfully, that attraction passed. However, he has developed a keen interest in automobile engines—piston, spark plugs, etc…….

However, autism does not define who Nicky is. He is a sweet, social little boy and like any child with siblings, likes to sometimes torment his younger sister. The first time he hugged this grandma remains a special day in my memory. This past holiday season, Nicky flew by airplane (a challenge for him, his mother and other passengers) to visit me. He saw snow for the first time and for a young boy who hates to keep his socks and shoes on, threw on my old boots and played in a leftover snow bank with his sister. While visiting, he helped his father replace a damaged ceiling light/fan unscrewing the pieces of the old one and piling them up for the recycle bin. And recently andfor the first time when I was on the phone speaking with his mother and I shouted “hello Nicky,” he yelled back, “hi gramma!”

Here are some valuable informational sites for families with children on the autism spectrum: http://www.autismspeaks.com, http://www.rethinkautism.com, http://www.autism2ability.com,www.asatonline.org.

Postscript: Every child on the autism spectrum is unique and different from any other. Unfortunately, available services vary from state to state as well as professionalism and training of educators, teachers and aides in the nation’s elementary schools. Parents/grandparents need to communicate with their respective state/local congressional representatives and local school systems regarding the special needs of their autistic children. These children require knowledgeable, educated and well trained school administrators, teachers and aides in all elementary schools. Additionally, there are many children on the spectrum that could and should be integrated and mainstreamed in regular classrooms rather than segregated with other children with different special needs.

Light it up Blue Today and Everyday!  Change can happen! Let your voice be heard!