By Annie Becker
Since my son, Noah was nine months old, I felt a burdensome amount of pressure to involve him in every service possible. Ranging from early intervention, specialized education services, to at-home therapy. I have spent an ungodly amount of time researching ways to incorporate “language” into everyday activities for a non-verbal child. I have taken the advice of each of his therapists on ways to use the skills they are working on in therapy with him on a daily basis. I have done my due diligence to maintain a creative, enriching, and full therapy schedule for Noah. I have pushed him, too hard at times, in fear of regression.
Regression was a terrifying word when Noah was first diagnosed. Before we understood much about AS, everything was a scary possibility. Thankfully, Angelman Syndrome is not a degenerative disease; it is not associated with the loss of skills. It has taken me over two years and lots of discussions with professionals to come to terms with this word and it’s lack of long-term impact on Noah’s life. Sure, regression is normal: we all suffer from regression at some point in our lives. Noah has suffered regression from time to time, which has told us that his therapy is working. I made the assumption that regression indicated a total loss of a skill, never to be regained. Therapy was clearly the only prescription for such a “condition.”
We moved when Noah was one year old to New York. He began receiving 10+ hours of therapy a week through early intervention. That’s just the work done with professionals; we haven’t accounted for the endless “experiments” we try at home with him: the joint compressions, brushing for proprioceptive input, the wheelbarrow walking and swinging for vestibular sensory needs, and the endless toil that is his glasses. This routine is something that keeps me feeling “safe” about the situation and yet at the same time, somewhat jaded. Sometimes, I want a break… for Noah, for our family, selfishly, for myself. A break from the routine and making sure Noah is constantly ready for whatever therapy awaits him.
This summer we are packing up our belongings, leaving one of the most fulfilling journeys of our lives, and moving back to the Midwest. My husband will start a tenure-track position, and Noah will start preschool. We will be surrounded by old friends, our alma maters, and the comfort of the return to our “first home” as a married couple and family. Noah will not be offered services through the district for at home therapy. He will not be offered music therapy or free trips to the museum with a therapist. He will go to preschool three days a week and then come home to me. Initially, I wasn’t behind it and told my husband he should turn the job down. I was reminded of my distaste for a “special needs family” and how I didn’t want our life choices to revolve around his challenges.
I ran across an article about children’s resilience, learning capabilities and motivation. It discussed how some children thrive in rigorous therapeutic schedules; they crave routine and normalcy. It discussed how some children with more severe needs do better being home schooled, so they are receiving more attuned care if the parent is willing and feels capable. Lastly, it discussed the children with special needs who did best when placed in a typical education setting. Clearly, they will require specific assistance for the needs they carry, but without becoming a crutch. What I took away from this was that perhaps a full load of services past early intervention isn’t as beneficial as was once believed. Honestly, the only people to make a decision about their child’s education and well-being are the parents, not an article, a study, a doctor or a therapist. I can almost wholeheartedly say that I am eager to see how Noah will do in a new typical education setting—a schedule that isn’t bogged down with three therapists a day visiting our home. The flexibility to have a picnic at the park at the expense of a nap.
So while I used to take solace in the fact we carried a heavy schedule, I am looking forward to seeing what my son is made of, however scary that may be.
About the Author
Annie Becker lives in South Bend, IN with her husband, a physicists, and son Noah. She holds a B.A. in Psychology and Creative Writing from Indiana University and is in the process of pursuing an M.A. in Creative Writing. She has a love for writing Haiku’s, poems, and short stories. She maintains two blogs; http://noahdash.blogspot.com, chronicling her journey of raising a special needs child and mothering. Her other blog is located at http://writehandedwords.blogspot.com, which serves as her creative writing outlet. She enjoys finding new ways to explore a vegetarian diet and enjoys ice cream.