So far, this school year has been a mighty challenge for Lukas, and, by extension, for me. Kindergarten stressed reading mostly, and Lukas's visual learning style and photographic memory made it easy for him to learn sight words and many other words quickly. The demands of first grade, with greater emphasis on math concepts and daily homework, have caused many meltdowns and dramatic pronouncements around our household. The simplest math assignment can take Lukas 30 to 45 minutes, most of it spent whining, complaining about imaginary injuries and illnesses, and acting silly to distract from the task at hand.
And then there are the standardized test scores, feedback from the Measures of Academic Progress (MAP) tests the kids in our district take three times a year. Lukas started out in kindergarten with respectable scores in both math and reading, but his scores have gradually declined with every test. The latest scores were dramatically poorer than the last, completely contradicting the progress I have observed. I find myself dreading the parent-teacher conference this week, afraid to hear the news is worse than I think.
In short, the rocky start to this school year has me in the clutches of The Fear. Any parent of a special-needs child (and often, any parent) knows The Fear, the horrible, sinking feeling that our child will not enjoy the life we envisioned for him. It's a feeling of powerlessness and hopelessness. It sucks the joy out of parenting and leads to sleepless nights.
I first felt this feeling when Lukas received his diagnosis at age 2-1/2. I had contacted my pediatrician with concerns about excessive drooling, and after speech and occupational therapy evaluations, I learned Lukas had significant delays in expressive and receptive speech and fine motor skills. I rolled with this pretty well, although I was surprised. Lukas was my early talker and walker, and I hadn't seen anything out of the ordinary. Then my pediatrician asked me to come in to talk, and told me she suspected Lukas had autism. She recommended an evaluation by an developmental pediatrician. My immediate reaction was denial; no way was this outgoing, happy little boy autistic.
But then the diagnosis was confirmed, and The Fear had me. I ruminated on everything from his potential ability to drive a car to his future love life. I saw a future where Lukas would never live independently or have the satisfaction of meaningful work. I finally recovered by building an action plan and focusing on what I could control. No, I could not guarantee my son would have a girlfriend someday; however, I could obtain services through Early Intervention, make a list of short-term goal ideas for his first IEP, learn to write social stories to help change undesirable behaviors, and battle the insurance company to get coverage for his therapy.
Banishing fear let me return to my top priority - loving my boy. Knowing I was working hard to help him progress let me relax and enjoy his cuddles and his silly sense of humor. Over the last four years, I have seldom felt sad or hopeless. As an active member of Lukas's IEP team, I worked the plan, and I saw gratifyingly positive results. But now that things are not going so smoothly, I have lost confidence. I am back to envisioning worst-case scenarios and battling despair.
If I am to recover from this emotional setback, I need an action plan. The first step in that plan is admitting my fear. And now that I've done that, I can see the concrete actions I can take to fix this. Lukas's annual IEP review is coming up. I can prepare by writing down my concerns and sharing them with the team in advance. I can brainstorm some ideas to bring up in the meeting - does Lukas need someone to help keep him on task during MAP testing? Can homework be reduced to cut down on the time we spend? I can contact Lukas's developmental psychologist for help with school strategies.
I can also take a cue from Lukas himself. Although his disability can make him anxious about things most people wouldn't question, like checkups and haircuts, he can be brave about things even adults fear. Lukas will happily jump aboard a roller coaster again and again, never questioning his safety as he hurtles up and down the hills. Life with a disability is a roller coaster, filled with ups and downs. I just need to hold on, have faith, and allow myself to enjoy the ride.