9 Things Special Needs Families Want You to Know
I am that parent. The one I never wanted to be. The one who is the squeaky wheel but just wants enough grease to move through the day like anyone else. I can’t help that one of my bicycles is exceptional and requires a little more grease than the average bike.
I’m not really talking about my bike. I’m talking about my special needs son, Amos, and what I want you to know about us.
1. We are not just like you. Many of us were just like you but that time seems surreal and uncomplicated to our hardened minds. Life, as we all know but often forget, is often relative and the grass is greener, or not, depending on whether we wear our rose-colored lenses.
2. We are really tired. Maybe it’s just me but I am exhausted most days — virtually wiped out. Having a special needs child has been physically trying for me. Many of us feel like we are parenting on a stage.
3. We feel lonely. There are way more of you than there are of us, and it’s hard not having many friends who understand. I find myself clinging to people who may have some notion of what it feels like to have a child you really don’t know.
4. We are isolated. Although we know it is our responsibility to reach out, it’s hard to ask for a kind word or a funny joke when we are often trying to convince ourselves not to cry while our little person is having a fit.
5. We loathe sympathy. I don’t need to be encouraged to feel depressed or cry at the playground or over lunch. You can bet I am an easy target, but I just don’t go there. Your radiant smile doesn’t fool me, but I’m thankful for it because I need to be reminded of joy when the going gets tough.
6. We are really busy. The time required for doctors’ appointments includes phone calls, gathering information from the latest assessments, visiting rooms full of records, cajoling insurance companies, scheduling and rescheduling therapy visits and more. I had no idea there was so much behind-the-scenes work for special needs children — and that doesn’t even include our journey of seeking a diagnosis, the specialists we see regularly and the surgeries that have taken place.
7. We need a break. Though we need it on our terms — no pressure, please. We want to see you, too, and we want to get out of our situation more often than you can imagine, but it is hard. Our special needs child can make fun events incredibly stressful, so we’re limited to relying on babysitters for a night out, and when we go out together as a family, those outings can quickly turn sour.
8. We are thankful for the person who has designated our family as “special needs.” We know you are secretly relieved the child is not yours because we once were you and thought special children only got placed with special families. That kind of talk is annoying, and even if you feel the need to say it, please do not. We understand our guardianship role better than anyone. We also understand the fierce love that attaches to the child who did not land perfectly on this earth.
9. We are just like you. We have good days and bad days, and sometimes we want to talk about the hardships. Other days we just want to hear a tidbit of gossip, some bad language and community issues that spark debate. We need to get outside of ourselves and we count on you to hold the line steady and strong, ready to pull us to safety when we need it.
Adrian H. Wood, Ph.D., is a North Carolina writer who lives in Edenton with her husband and four children, the youngest of whom has extra-special needs. Read more of her writing at talesofaneducateddebutante.com.