Your Magic Wand

What would you do if you had a magic wand? Would you make changes for your children with disabilities? Yourself? Other members of your family? Or would you use it to help those outside your family – doctors, therapists, neighbors, extended family, friends – understand and accept your children with disabilities?

I think most people outside the sphere of disability would immediately think we would use the magic wand to ‘cure’ or ‘fix’ our child with a disability. My co-workers, for instance, would be sure I would wave the wand and make Ashley see and hear, or Ronnie hear, or Jessica stop her raging behaviors. Well, other than Jessica’s raging behaviors, I wouldn’t use my wand to change my children – unless they asked me to.

I love my children exactly the way they are. If they preferred to have their disability taken away, then most certainly I would use my wand for that. But it wouldn’t mean they would be any ‘better’ in my eyes. They are perfect already.

I believe I would use my wand to make their lives and my life a little easier. I would wish that we would all not catch so many colds and get so many infections. I would wave it before walking into a doctor’s office. My wand would go shopping with us to stop the stares and rude comments. And of course I would use it to instill a belief in their teachers’ minds that they were capable and worthy of an appropriate education.

I might use it to help Ashley sleep a little better at night, and to get things done around my house to make it easier for Ashley’s and Ronnie’s wheelchairs to get around. Then of course, I could use it to make the grass and landscaping in my yard always look perfect!

Having a magic wand would indeed be fun for a while. How about you? How would a magic wand help you?

How To Move Past Hypocrisy

When my family goes anywhere, we usually don’t go quietly or unnoticed. We’re not Kate Plus Eight, but everyone’s attention is usually diverted, at least for a short period, to my family. And, being someone who is more comfortable not being noticed, this situation has been quite an adjustment for me.

For the most part, I’ve moved past caring too much about the stares of strangers when we shop, go to the park, go to the movies, or other community activities. But there is something that still troubles me, and I don’t know what to do about it.

Because I am a single parent, where I go, so go my children. Tonight, a memorial service is being held for the recently deceased mother of one of my co-workers. My co-worker and I have been with the same employer for over 25 years now. I am expected to be present at the service and I want to be present. What I don’t want is for my family procession to take anything away from the decorum of the ceremony. And that’s just one example.

About every two months, all my co-workers get together at a local restaurant for dinner. Families are included, and very often attend. But my family is a little different than most – okay, a lot different. My co-workers don’t understand my children and don’t know how to interact with them. In fact, some are probably uncomfortable around my children.

My children and I should not have to spend our lives only moving in social circles of families like our own. While I love every moment I spend with my friends that have children with disabilities, and I am so grateful for their support, I really don't want to impose limits on my children.

I espouse inclusion to anyone who will listen. But here are situations where I could choose inclusion for my children, and I don’t. I guess that makes me a hypocrite. But how do I move past the uncomfortable feelings for others as well as for my family to get to that state of inclusion?

Why?

The group home in which Jessica lives is dark. The draperies are usually closed – the furnishings are dark and heavy – even the air inside the home seems oppressive.

The day support program she attends is in a one-story cinderblock building. The walls are institutional green – the adornments on the walls are posters about CPR and behavior management – the furniture is old and mismatched and lost its original color years ago.

The school classroom to which Jessica is assigned is in the basement of the school building. It too is dark and joyless. Again, the walls are institutional colors, and many of the lights are burned out. There are no windows and whole feeling is one of gloominess.

The descriptions above are not the exception. Jessica used to attend a different day support program, and it was worse than her current program. And the other two group homes in which she has lived were also dark, gloomy, and drab.

Why?

Why don’t people with disabilities deserve lightness, bright rooms, cheery kitchens and the occasional barbecue outside? Why can’t they assist in planting flowers and a vegetable garden at their group homes? Why can’t the draperies be opened more frequently and why can’t pleasant music be playing in the background rather than the constant din of the television?

How can we expect children with disabilities to be excited about going to school when the being there provides nothing visually stimulating? Do school districts think our students with disabilities will learn more if there is nothing but plain green walls to distract them? Why aren't there 'spirit' posters and announcements of school dances in the 'special education' hall? In fact, why is there even a 'special education' hall?

How can we expect our children with disabilities to learn and grow at their day support programs when they dread going there? Why can’t there be celebrations and joy in the places they spend the majority of their day - maybe ice cream sundaes and cupcakes with rainbow sprinkles? Why can't the staff smile more - do they really hate their jobs as much as their faces seem to say? Why must their lives be filled with darkness and gloom? Again, a little paint would go a long way to improving everyone’s moods.

I wish I had the time and money to paint, refurnish, and refurbish these places. I’m convinced that we would see improved moods and improved behaviors if environments were improved first.

A Virtue

Pretty much everything we do as a family takes a long time.

When we decide to go out, we have to start getting ready at least 30 minutes before we need to leave. Backpacks need to be packed - medicine needs to be packaged - trips to the bathroom need to be made - extra food needs to be brought - and 'diversions' need to be remembered. I feel like we are being spontaneous if we get out of the house in under 20 minutes.

Getting two children in wheelchairs into our vehicle takes a while also. Then making sure everyone is buckled in and nothing has been forgotten, and we are usually pulling out of the driveway in another 10 minutes.

When we arrive at our destination, we reverse the process - and it takes a while. Chairs unloaded - children loaded - backpacks and other paraphenalia accounted for - there goes another 10 minutes.

But it's when we are leaving a public place - a store or restaurant for example - when our slowness seems to really irritate people. Whether it's the person waiting for our parking spot, or the people whose paths we are blocking with the wheelchair ramp - often they really get annoyed with us.

I've also noticed that annoyance on school mornings when the bus arrives. As with our vehicle, lowering the wheelchair ramp, backing Ronnie's wheelchair onto it, making sure the safety strap is in place, then raising the ramp into the bus takes a few minutes. After Ronnie is on the bus, then it is Ashley's turn to walk to the front of the bus and board via the steps. She can't board the bus until Ronnie is on because the bus aide must be there to assist her up.

There are usually 3-4 cars stacked up in either direction waiting for the bus to turn off the flashing red lights, and I can read the impatience on the driver's faces. Sometimes a driver will get so impatient that they will turn their car around and take another route.

Why the annoyance? Why the impatience? I really don't try to go slowly - it's just the way things are for my family. And really, is an extra five minutes such a burden to others?