Monthly Archives: October 2015

Halloween Overload

When my friend Sarah Evans (the wizard behind the podcast Bringing Up Betty) asked if I had any funny, weird, wild, sad, or true stories about Halloween with the special needs family, I was like, “Duh. Yes.”

So she interviewed me and the story can be found here.

It’s a worthwhile topic—how holidays differ for families with special needs. I tend to dread aspects of each holiday because everything that most folks love about them tends to be the sort of thing that unsettles people with anxiety, autism, and cognitive delay.

Also, I’m sick of Halloween and ready for November. Carry on.

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Saturday is a special day

Weekends are a menacing black storm cloud on my weekly horizon. All the reasons most people love weekends are all the reasons Jack (and sometimes Charlie) can’t handle them. They need structure, not free-form days.

And so, you guys, a Saturday at my house might look like this:

1. Jack sprinkles plastic Halloween confetti throughout my unmade bed.

2. Charlie deletes every single Xbox game from the system, thinking if they are gone, new games will appear.

3. I write a Standards Night presentation for the youth in my church while Charlie wails, from the teepee beside my computer, that he has deleted all the Xbox games and new games didn’t appear.

4. As I write and Charlie wails, Truman cries because he wants to sit in the teepee.

5. Everyone cries. Everyone is sad.

6. Jack squeezes my arm painfully, which in “Jack” means, “I’m losing it. Get me out of here. Saturdays are so completely lame.”

7. Jeff/Dutch buys popsicles and the entire household starts jumping up and down, squealing.

8. Jeff/Dutch holds the bag of popsicles up like baby Simba in The Lion King and the children rejoice.

9. We send everyone to the backyard to eat popsicles while we sneak the Cherry Coke from the car to the secure location downstairs that Jack doesn’t know exists.

10. Laundry happens. I take my sheets and blankets to the deck, shaking orange, black, and silver confetti onto the lawn.

11. Jack throws the remaining shop vac (the one he hasn’t dismantled) across the kitchen, down the stairs, into the garbage.

12. Jack tries to cut the cords from kitchen appliances with scissors.

13. Jeff/Dutch says to me, “I do not love Saturdays.”

And I concur.

   

Clearing out dead things

imageThere is something intensely satisfying to me in cutting back dying plants in autumn.

I am not gifted with flora. I do not find solace in tending to shrubs and trees and flowers. It is purely a chore for me.

And so when I lopped off the top of the dead lavender plants this evening, revealing a tidy, controlled space without gregarious bushes flopping onto the front path, I was pleased.

It’s fall now. Cool weather is here. A dry leaf scuttling across the street in a wind gust sends a twinge of anticipation through me.

It used to be that Thanksgiving and Christmas pulled at me magnetically through the fall months. But now holidays are hard. Disabilities and busy, expectation-charged holidays are an explosive combination.

But holiday stress aside, I still feel alive when the weather turns.

Winter’s approach is cold and menacing. It bodes poorly for the house where Jack lives. It means no more jumping on the trampoline with bare feet. It means being a sensory-seeker stuck inside too much all winter long.

All these things about cold weather prick me with fear.

And yet, October makes me happy. November too.

I can’t help it.

Behold, thy Mother

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Tuesday of this week was the kind of day where bad things happened.

Three people associated with the school all lost their cool at separate times and said hurtful remarks to me about things that Jack hadn’t actually done but which they were afraid he might do.

When someone vehemently spouts their displeasure at a special needs mom about her kid, it’s a little like kicking a mortally-wounded horse. Not trying to be dramatic, here, just honest.

I keep thinking of that scene from All the Light We Cannot See when the the Nazi youths are instructed to throw buckets of cold water on a starving, sick Jewish man. Outside, in the middle of the night. In winter.

It doesn’t happen all the time, but when it does, when people are freaking out at me because caring for Jack is hard, I feel like that dying Jew.

I know it’s hard, you guys. I do it, always. I’ve been doing it for eleven and a half years. I know exactly what it’s like and I. Can’t. Fix. It. Nor can I quit or request a transfer.

I called Jeff and cried. He rearranged his schedule so he could be home that night. I ate mint chocolate truffles in my bed.

Jack seemed out of sorts after school, so I loaded the kids and the respite sitter into the van and went to the pediatrician’s office. Jeff met us there and held Jack on the floor so they could a) look in his ears and b) squirt the flu mist up his nose. Actually, she only was able to glimpse in one ear. It was so hard to restrain Jack, and that one ear was so infected that the doctor put her otoscope away and wrote us a script, fast.

Also, Jack pooped his pants during all of this, so the exam room smelled like a latrine.

And I wanted to fall into a crevasse, never to be heard from again.

But instead I drove to my faculty development meeting and, on the way there, listened to Jeffrey R. Holland’s talk, “Behold, thy Mother.”

I wanted healing.

I felt desolate.

I was heartbroken for Jack, who can’t speak and whose mind doesn’t work like everyone else’s. How desolate must he feel?

Anyway, Holland’s words were a salve.

I bore Jack and I am bearing with him. We are tethered together on this steep, cold mountain, crevasses all around.

Jack has me and I have Jack.

We have each other. We have Jeff and the boys.

We have Jesus.

The end.

 

Not enough is good enough

This morning as I mopped the urine from Jack’s bedroom floor, I realized that one of the best things I’ve learned from my children is that I’m not in control of much. 

Not that this was always a good thing. I hated it. 

I hated the meltdowns and the lakes of urine, the poop and the rigid routines. Sometimes I still do.

For a long time, I saw my inability to fix the issues with my children as depressing and hateful. There was no solution, only muddling. 

But, somewhere, I began to see that being not enough wasn’t a defect. 

I don’t remember when I stopped mourning my inability to make things better. It likely came with hindsight, as I began to see the good things disabilities have given to us. 

Much like canyons are carved by rivers slowly and steadily washing sediment downstream, time revealed to me that being inadequate is actually a normal human state.

A person who usually has success can develop a self-assured sense of ability and rightness. I guess we call it pride. Sometimes smugness.

But a person whose life often spins out of hand sees that the stuff of life is bigger than she is–that some things can’t be controlled or righted. 

It isn’t a matter of weakness or failure. It’s reality, and it has freed me.

Life on earth is beautiful and scary, and you can’t have the beautiful parts without experiencing the scary parts. 

I guess the best part is that when everything went pear-shaped and I couldn’t make it better, my own wanting made me prayerful–really wanting and really prayerful.

Jack gave me a gift when he showed me I can’t manage alone, which is what God had been waiting for me to understand.  

  

Learning Curve

My life has undergone a change in the last two months as I have gone back to work part time. Two mornings a week, I teach college writing. Here are a few things I’ve discovered:

1. I’m busier now, but happier. The same problems still exist at home and likely always will, but now I sometimes get to close the door on developmental disabilities (temporarily) and open a different door with another view. It’s lovely.

2. My blog is suffering. I have less time to write, less of an absolute urgent need to write, and most of my creativity is being channeled into lesson plans. I’m fairly certain that I’ll get back to my old writing ways after this semester, when I have a reservoir of lesson plans to draw from. Bear with me. Life sometimes gallops faster than my ability to blog about it.

3. A lot of teaching (and writing, and playing sports, and doing any number of things) is feeling that you ought to be there, that you have something to offer—that you’re not just an imposter, pulling one over on everyone everywhere. It’s psychologically understanding that you can do this thing. It’s been an instructive experience for me to see that a purposeful life involves honoring your gifts, recognizing them, and sharing them, instead of downplaying or ignoring them. 

4. It seems counterintuitive, but I feel like a better mom now that I leave for a few hours a week and also have grading and prep work to do at home. I feel less heartbroken by every aggressive behavior or anxiety-riddled behavior. It seems I’m calmer because I do something now in addition to the poop cleanup and the meds and the behavior management. I have an outlet and it leaves me more centered to handle the same old predictable issues that will always be part of life with disabilities.

5. I get to interact with my students, who are wonderful. I feel enriched for knowing them.

6. Teaching is a privilege.

7. When there aren’t enough hours in the day anymore, nonessential things slough away. I am okay with this. Currently, I don’t have the time or the desire to decorate my house for fall and Halloween. This is something I used to love, and now I give exactly zero flips about it. Charlie still cares, though. I may need to turn him loose with the Halloween decor and let him do it.