The motto at my house is "keep moving" and for parents of special needs kids, it's often just a way of life.
Fortunately for those of us living in this area, there's a wealth of resources, doctors, services and activities for our "special" kids. With friends around the country, I've learned that not every area has as much to offer along this line as our community. But of course all that being available keeps us running.
It's a rare week that my 11-year-old son doesn't have at least two medical appointments. Sometimes it can be two on one day; sometimes as many as five in a week. Prescription drop off or pick ups, eye glass repairs, palate expander adjustments, occupational or speech therapy are just some of the many things that need to be taken care of.
Some days I think I'm surely going to show up at the wrong place at the wrong time with the wrong child and when I talk to other special needs moms, it's the same -- constantly coordinating and changing appointments and trying to make things as "typical" for our kids as possible. Danny was invited to someone's house on Thursday? Let's change that orthodontist appointment. Samantha needs to stay after school for extra help. Gotta re-schedule the neurologist. School psychologist needs to meet with me? Can't make occupational therapy this week.
Special needs parents often have a hard time working a full-time job because of the time involved in managing a child's care. Phone calls and meetings regarding individualized education plans, medication management involving doctor and pharmacy visits, monitoring blood or special diets, it all takes time.
Claire Dumont of Garden City juggles two part-time jobs in order to be home afternoons for her 14-year-old autistic son.
"If it wasn't me, it would be a babysitter and it would have to be someone specially trained in sign language and behavior," Dumont explained. "Sometimes if he's having a bad day I might have to get him at school early. He has a lot of doctor appointments and there's no way I could stay on top of everything if I didn't get home until 6 or 7 p.m."
Because things can sometimes be a little more difficult for our children, we parents tend to look for things they can have a say or a choice in, and that often means more demands on our time and energy. We rely on friends a lot for transportation, sharing what works and what doesn't and for when we just need a break.