He was one of the first students I met as a new Speech/Language Pathologist to the local school district. I came well equipped as a newly trained PECS (Picture Exchange Communication System) therapist and was ready to make a difference with kids who were non-verbal. He was a second grader who was petite, smiley, loveable. We worked on functional communication by teaching him to request his most favorite things: musical toys, board books, videos, Elmo. He was easily pleased by most anything in his box full of reinforcers which went where ever he went. He rocked, he spun his string, he licked his palms. Here all along I thought I was teaching Will something important and life-long when really it was quite the reverse.
Terry and I found out I was pregnant right after I landed my first full time job teaching. My other 3 children were in middle school and very close in age. The age span between the youngest and Will is 12 years. Will was born October 15, 1999, about a week after my 42nd birthday. We named him William Robert. William was his grandfather’s name and Robert was from another special friend. He was born at 5:06 pm at Meriter Hospital in Madison. We knew because of my age that I had a greater chance of having a Down Syndrome child, but we chose not to find out during my pregnancy. Will’s birth was without complications and I worked all day teaching. We did not know until the next day that he had Down Syndrome. He was little, but so were my other three children, James, Katie, and David. We were lucky that he did not have any other complications like heart problems, so we were able to take him home that next day.
Will went everywhere with us because our children were very involved with school and sports activities. His first music concert was when he was 3 days old. Our daughter, Katie, had a band concert at the High School Auditorium. This should have been an indicator of his love of music. Our lives continued on through his baby, toddler and and preschool age as a typical Down Syndrome child with delayed milestones. He never really crawled, he scooted, and he finally started walking when he was 18 months. He was very small for his age. Will loved to smile and was always a happy child. He would interact with babies and played with his brothers and sister and loved to tease our dog and cat.
Will went to early childhood at age 3 and daycare while I was at work. At about 3½ we started noticing that he was not talking very much. We were told that that was typical of children with Down Syndrome and not to worry. We had him in birth to 3 for physical therapy and speech therapy. Will would take a string and twirl it around and around and he was also rocking and making noise when he was sitting. He would play musical toys over and over again, many times it was the same short lyric. He was also not giving eye contact like he had been. We were informed by school personnel that these types of symptoms might be an indicator of autism. He was diagnosed by the time he was 5 and he had stopped talking except 1-2 words.
This added diagnosis was very difficult to accept. We did not have that much knowledge of autism and how that would affect his learning. We started to read and tried to do the programs they suggested for autistic children, but found out that much of his learning needed to be changed when he was younger. We had 3 children in high school/college so we decided to continue with public school and to provide the best we could for him. We noticed he had sensory issues and stopped touching animals including stuffed animals. It took a lot of behavior modification to get him to hold stuffed animals. Finally we used musical stuffed animals to change this. He is still unwilling to touch real animals, but lately he found u tube videos of barking dogs and that is helping him be less nervous about touching dogs.
Today, Will is an amazing 15 years old who loves Special Olympics bowling, running track/softball throw and his greatest love is music and computers. He is able to use Garage Band on his I Pad and is creating music during band and at home. He loves swimming, our boat, and the convertible where he wants to go fast all the time. He likes the air through his hands and face. Will is still non verbal, but is becoming more vocal with sounds. We are hoping some day to hear the words Mama and Dadda again. He uses a communication system and is able to tell what he wants through that technology. He is a happy young man who has a laugh that is so contagious he will make others around him laugh and smile. He is an uncle and loves to face-time with his nephew who is 4 months old and who also has an October birthday. He is helping out more at home putting his dishes up to the counter, doing small chores around the house, and loves seeing his brother, David, after school who is helping watch him. He has an incredible memory and remembers where things are even if he hasn’t been somewhere for a long time. Will is a special young man who has enriched our lives and the lives of his classmates and people he has met. Many of his classmates come up to him in the community and make a special effort to say hello to him. He continues to provide us with love and keeps us young.
Life doesn’t always gives us what we want, but God will only give us what he knows we can handle. The journey has had its twists and trials but we watch as he continues to grow into the wonderful adult he is becoming and continue to hope that he will be able to achieve all he is capable of achieving. We have been blessed with 4 children who are all different, but continue to show us the meaning of love and life.
Leanne and Terry, Parents of Will
A special thanks to all who have contributed to the Carrie Anciaux Photography Stories of Autism Annual Picnic. This picnic invites the 47 families that I’ve photographed over the past 4 years together for an afternoon of fun. Some families will meet for the first time while others reunite knowing that no judgement is placed on behaviors or appearances. Love, support and friendship is offered at no cost. Last year’s group released butterflies as a symbol of “spreading autism awareness and acceptance”. This moment was definitely one of the best memories I have from that day last August. If you’d like to support our picnic, please visit this site and donate $5, $10 or any amount you’d like. Each $5 increment will earn a raffle ticket for a drawing to win a Carrie Anciaux Photography photo session & $100 photo credit or a Judy Endow unique print. Drawing will be held May 1st. Thank you to all who support and love someone on the autism spectrum!