The worst part of raising a special needs child is knowing that you won’t live forever. Grace, despite her disabilities, has the expectations of a normal life span, as do I. Unfortunately, we began the journey 32 years apart. I have tried for the last 14 years to ignore the fact that I’m getting older. The new aches and pains are ordered to leave my body, because I have too much to do. Carrying her upstairs, in and out of the tub, as well as in and out of bed can leave my joints and back aching, but I work hard to keep myself as healthy as possible in order to take care of her myself for as long as I possibly can.
Last week, my rose colored view of my own immortality came to a screeching halt. We had an interview/evaluation at the HMS school. (hmsschool.com) HMS is an amazing school specifically for children with Cerebral Palsy. The programs are fantastic, and she will have so many resources available to her. If all goes as planned, she’ll be starting in September. During the evaluation as we were discussing the socialization curriculum, the director told us that they encouraged organized sleepovers at the school. It is a residential facility as well, and children come from all over the country to attend. Grace will be in a day program. My first thought was “Absolutely not.” I didn’t realize I’d said it out loud. Nancy, the director, looked at me and said “Why not?” Well, because she’s only 14, and I’m not comfortable with someone else tucking her in, and what if she’s scared, and, and, and….. “She’s 14” she said. “She should have the same experiences ‘normal’ kids have, with girls her age, in a surrounding she’s familiar with. And, her aid will be with her, whom she’ll trust, as will you.” Yeah, whatever. I must have had a dazed and glazed look on my face, since Nancy just smiled and took my hand and said “It’s okay. We’ll revisit it at a later date.” Again, yeah, whatever.
Then we moved on the the educational curriculum. Part of Grace’s IEP (individualized education plan) deals with transition from school into the adult world. Knowing where to shop for items, how to ask for directions, how to identify and use money, who to call for specific situations, etc. Nancy said one of the items that will be covered was teaching Grace how to interview caretakers. Dazed and glazed again, I said “Well that’s my job, why would she need to do that?” Nancy said very matter-of-factly, “Because you aren’t going to live forever. She needs to know how to interview someone in order to hire somebody she feels comfortable with bathing her, changing her, and helping her with her day to day needs.” Boom. There it was. The 98 mile an hour fastball I’d been preparing for was replaced for a slow, lobbing curveball. I must have looked like I’d been hit by a truck, but Nancy, I’m sure, has given this speech before and gave me a few minutes to let her words sink in.
I’ve been so focused on what she needs today, this week, this year….that I haven’t spent time thinking about what she’s going to need 50 years from now. Yes, I’ve planned financially, and planned as to who will be her guardian…but the normal day to day happenings? I guess I just assumed I’d be around forever in a Tuck Everlasting sort of way. It’s time to let go of my superhero status, and slowly begin to accept that I am seriously, just a mere mortal.
We’ll start with considering a sleepover.
Karen Cluxton lives in Hatfield, PA, and has three teenagers – Halle 16, Owen 14, and Grace 13. Between shuttling kids to soccer, baseball and physical therapy, she trains in Mixed Martial