autism · cancer · Down syndrome · parenting · special needs parenting

Always Waiting For the Other Shoe To Drop

We are on a bit of a roll over here.

We have a steady respite person. This week I got an application for a self-determination employee, someone who will take Ben out and work on community living skills with him, and Ben’s caseworker has things lined up for ABA therapy to start soon.

Not only that, but his health seems to be fairly stable. we have the steady stream of appointments lined up to maintain stasis, but his sinuses are relatively clear this year, and after several months of a MRSA infection, that is clear too. We’re barreling toward 3 years since his last hospitalization, a personal best.

His new psychiatrist is using a combination of medications and supplements which seems to be effective, meaning no violent outbursts in the last two weeks (a big deal here). By every measure, we are making progress, loose ends that I have pursued for years are coming together. We are moving past many of the dead ends and setbacks we have slammed into through again and again.

Only an itty bitty piece of me indulges in celebration. A morsel that is quarantined away, so as not to grow or infect any other part of me. Carefully encapsulated, observed and disciplined, so as not to risk any loss of control. I’m reluctant to even mention any measure of success.

Instead, I steep myself in caution. I mentally list all the things that might go awry, cataloging them repeatedly in chronological, alphabetical, and decreasing and increasing orders of severity. With an epilogue full of asterisks in case of some unforeseen and unforeseeable event.

Because we live in the land of the unforeseeable.

In complex parenting, a hospital discharge can mean a return with a worse diagnosis later.

In complex parenting, medications come with reactions and side effects that strike at any moment.

In complex parenting, a routine appointment too often turns dreadful.

In complex parenting, we brace for the worst-case scenario, not out of fear, but out of habit.

In complex parenting, we don’t rest on success or achievement, because there’s always more to accomplish. Because the bottom can fall out at any time.

We live precariously balanced. We unravel knots while tying up others. We tiptoe around, not on eggshells but on shards of blown glass, knowing that any misstep leads not only to breakage but to harm. We guard our hearts against joy and celebration, no matter how hard-earned, because we’re braced for a crash.

It’s a superstitious, ritualistic juju dance of not jinxing ourselves and warding off the bad by keeping our fingers crossed and a loose grip on the good.

BrenĂ© Brown called it Foreboding Joy, and I reaffirm my departure from her on this. If you get excited when I share my news, I won’t join you. When you tell me you’re praying for it, I won’t bother telling you I don’t exactly trust God to keep us from the fire, rescue us from the fire, or keep the fire from consuming us anymore because experience hasn’t borne that out.

I’m keeping my armor fastened, with a crest of foreboding joy on my breast, and charging forward as always. I don’t know if it’s smart, necessary, or maybe even slowing me down, but without it, I stand naked and terrified.

 

advocacy · autism · Down syndrome · special needs parenting · Uncategorized

At The Risk of Sounding Like a Jerk. . .

Can I confess some mixed feelings?

A little backstory: Alex brought home a flyer for the Night to Shine”, an event created by the Tim Tebow foundation to provide a formal dance night for people with disabilities.

It’s probably no surprise if you have read my previous posts to find out that I’m prone to over thinking, and this is a prime example of that. But pardon me for working it out here with you, especially if I end up with pie on my face.

Of course, Alex wants to go to the Night To Shine. An evening out with his friends to get dressed up and dance is total fun for him.

I don’t want to not let him go. I mean, what parent wants to deny a child a fun time. And if you know anything about Alex, when he’s having fun it’s beautiful and contagious.

Yet, I’m struggling to get past the yucky feel of the thing.

By yucky I mean it feels like a Cinderella story where for one night everyone has fun playing pretend, and then when the clock strikes midnight the shoe falls off, the coach turns back into a pumpkin and everything goes back to how it was in the first place.

When the boys were younger we signed them up for a football event called Victory Day, where the participants took the field with a local high school football team and were handed the ball while the high school players gave academy award winning performances pretending to tackle the disabled person who eventually succeeds in running the touchdown. The whole thing was contrived, in a good natured way, but what rubbed me wrong and aged badly, was Ben’s touchdown run.

Ben doesn’t follow anybody’s playbook but his own, and rather than running a touchdown, Ben fancied himself a defensive tackle. What Ben wanted was to take down the ball carrier. Ben’s chance to play football with the bug guys became a comedy of errors, because Ben wasn’t about to run the ball, and instead, did his level best to get in a few good tackles. They ended up carrying Ben over the goal line in order to get him off the field with less than a full hour of time off the play clock. Long story short, the day left an aftertaste, one that leaves me wondering what the volunteer time, money and effort is really about.

I can’t fault the players for making every attempt to follow through on what they were supposed to do, but what, in retrospect, seems off is that the people the day was supposed to be for had no voice in how their one shot on the field went. They were given a ball and expected to do what was planned for them, rather than being offered a say in what to do.

Which leads me to wonder if when these things are planned, are there people with disabilities on the committees? On the foundation staff or board? Or is this something that typical functioning people are doing for people with disabilities?

Let’s walk this back. If you’re a woman, do you want all men creating and enacting their vision of what you want? If you’re an introvert do you want a committee of extroverts deciding what introverts want. It can go on and on with various people groups, but suffice it to say, every people group deserves representation when plans are made, rather than having plans made for them, and people with disabilities deserve that no less than any other group.

Looking into the Tim Tebow Foundation I am not easily able to ascertain if any board or staff members have disabilities, but I’m fixing to find out, as well as checking the local planning groups. Representation matters. Self-determination matters. It’s fine to serve, but even better to include and involve, while listening.

For now, I think Alex will attend, but not without reservations on my part. I’ve emailed the foundation and am eagerly awaiting a response on how involved people with disabilities are at the planning level. Stay tuned.