Sunday, September 28, 2014

I Don't Have My Sh*t Together

One of my co-workers made a crack the other day that hurt my feelings. While she said it in a joking way, she basically called me out on my slacker tendencies. I ruminated on it for days. I wanted to defend myself, but the truth is, I have no defense. I do leave stuff undone - paperwork late, equipment left out, co-signings piled up - things likely to drive her crazy. Don't get me wrong. My patients receive good care from me and I have complete confidence in the job I do for them. As a relationship-oriented person, I am likely to go the extra mile to make sure all their needs are being met, beyond occupational therapy, as well. But the other stuff, the mundane details, those are less likely to receive my immediate attention. 

I wanted to apologize and tell her I'll do better. But the staggering, deflating, and unabashed truth is I won't. I know this because I'm doing the best I can. 

A nauseating wave of knowledge hits me: This is truth in all areas of my life. As a wife, as a mother, as an employee, as a friend, as a sister, as a daughter, as an advocate, as a person, I'm doing the best I can. 

And I'm falling short. 

Appointments skipped, homework undone, laundry left in the washer, field trip money not delivered, emails unreturned, voicemails unanswered, text messages ignored, snacks not sent, basketball sign-ups missed, fine motor opportunities lost, reading practice shelved... The list is endless. 

For all I'm not doing, I can't seem to stop the thinking. My brain will not shut off. Constant ruminations of the above list, mixed with the current list of to-dos and an ever-running list of want-tos and time will not slow down. Catching up is an impossibility and my feet feel stuck in concrete when I do get an odd minute, unable to prioritize. 

Enter panic attacks. 

Now that Bo finally has a cocktail of medications that allow for more than four hours of sleep a night, my brain has found other ways to keep me from precious rest. If it's not rolling over the constant lists, it's worrying about the elusive "enough" known so well by those of us in the world of special needs. 

Do they get enough therapy? Should we add in outpatient speech again for Eon? I should call about the script for a communication device for him. Is he really in the right school placement? Does he get enough support? I hate that he is telling me about "mean boys" but can't communicate more than that. Is he just being dramatic as he tends to be or should I be doing more to investigate? What about Bo? He can't communicate at all. What if people are mean to him? I'd never know. Should I be demanding more communication sent home about him? I keep meaning to do flash cards for reading for those boys. Why do I keep forgetting? I need to spend more time in physical contact with Bo for attachment. I have not done enough of that with him. I don't do enough of his physical care, either, when I'm home. Do I do enough sensory stim...

It spirals on and on until the question becomes:
Am I enough?
And suddenly, my heart is racing and feels as if it will pound outside my chest wall and I cannot breathe. It takes all mental effort to slow my breathing, inhale, exhale, slowly now, breathe in, blooowwww out, over and over until I my muscles relax and normal breathing resumes. I am awash in sweat. I look at the clock. 3:07. Sleep will not come tonight. Which means I will be fuzzy at work tomorrow and the cycle will continue. Fabulous. 

So, I bought this shirt. 

I'm not one to use this type of language, but it called to me. It's true, obviously, but more than that, it gave me a glimmer of hope. 

If they made a t-shirt about it, maybe I'm not alone. Maybe someone else can relate. Maybe they are willing to own up to it, too. 

I don't know why it's true of me. I don't know if it's because I have eight kids or because some of them have special needs. I don't know if it's because I haven't slept through the night since January of 2013 or because I have ADD. I suspect it's because I'm human. 

Pride keeps us from admitting it, but I think most people are failing in some way. It's probably not on a colossal scale like me, but not many are living in a colossal family like mine. Worrying about all the ways I'm falling short only further distracts me from what I need to do.  

I'm a Christian. We tend to only present the side of us that has it going on. Maybe we think it will scandalize Jesus if we expose the truth that sometimes life just sucks, we wonder where God is, and we don't have our shit together. 

I hope it doesn't. Because this is me. This is where I am in the journey and Jesus is the one holding me in the middle of the night telling me to breathe in, breathe out, slowly now. Jesus is the one reminding me that I'm probably not enough, but He is, and His grace is sufficient for me. Jesus is the one loving the people through me that He puts in my path, even as I miss the details. 

He's the reason I can do my job with a smile, I can snuggle my little boys as I send them off to school, I can joke with my teens about pop culture, I can conjure up interest in hermit crab habitats and skateboard stunts, I can delight in yet another stuffed animal dressed up like Elsa, and I can laugh with my husband at the end of the day. 

In spite of all that I'm not doing, or doing wrong, Jesus is the only reason I ever get anything right. 

No, I don't have my shit together. I hope to, one day. In the meantime, there is grace for that.

Tuesday, September 9, 2014

Disability and Friendship

"So proud of my daughter," she gushed. "Out of all the kids in her class, she chose to befriend the child with a disability and now even wants to have a play date with her!"

I'm used to hearing that sort of stuff. 

I'm even used to seeing moms beam with pride when they notice their typical kids being nice to my boys with Down syndrome. 

I get it. I used to be the mom of the typical kid thrilled that her daughter was playing with the "special needs boy" in preschool. 

I volunteered in my oldest's preschool class one day and was startled to realize that her classmate, Collin, didn't have hands. Due to some sort of congenital anomaly, he had a few digits on one arm about where his wrist was and a thumb-like appendage at the end of the other wrist. Collin was equally as startled that the parent volunteer that day happened to be an OT and didn't let him off the hook for the cutting task, but modified it, instead. 

My daughter, three-year-old at the time Michaela (Mick), was completely undaunted and included Collin in every game she played. 

I was the mother bursting with pride on the way home and having the enlightened conversation with her daughter:

Me: I'm so proud of you for including Collin in all your play. It can't be easy for him to do everything you can.
Mick: What do you mean?
Me: Well, without hands, it has to be hard for him to do some of the stuff that you can do. So, it's really nice of you to help him and play with him. 
You're probably going to be surprised to hear me say this, but what a terrible message to send to a young child.  

I'm all for encouraging friendships with kids of all abilities, but I'm also very sensitive that we send the right message when we do so. Let me point out what I did wrong. 

Instead of encouraging friendship, I introduced the concept of pity, ie, "it's hard for him to do things." By congratulating her for doing what came naturally (playing with a same-aged peer), I highlighted the difference and gave her superiority in the relationship by telling her he needs help. Collin was no longer an equal and I removed all reciprocity from the friendship. Her focus was then on attending to his perceived needs and her desire to be nice, rather than on his killer kickball skills (her favorite game) and his keen sense of humor. 

I don't know if Mick played with him differently after that. I hope not, but I'd be surprised if she didn't. 

I wish I could apologize to Collin's mom. I get it now.

Prior to our conversation in the car, Mick had no idea that Collin was different. Most little kids don't notice difference like adults and if they do, they seldom care. The rest of our conversation:
Mick: (Baffled) What are you talking about?
Me: (Plunging ahead like the idiot I was) Collin doesn't have any hands. Haven't you ever noticed that?!
Mick: What? No. We just play and stuff. I don't look at his hands. 
 Me: Well, it's important that you keep being nice to him anyway. 
If I could go back fourteen years to my then-self, I would've handled it differently:

Me: Hey, you seemed to play with Collin a lot. What do you like about him?
Mick: He plays kickball really good and he has his own ball! And he's funny.
Me: That's great! Should we have him over to play? 
Mick: Yeah!
Me: Okay. I'll call his mom.
 See how easy it could have been? Encouraging friendship without passing along my own hidden disability prejudices?

I know what it's like to be proud of your kid's choices and character. If you have a child that willingly friends kids of all abilities, well done, parent. You should be proud. There are a lot of kids out there who would bully and malign my boys. More still who wouldn't give them a second glance. 

But almost as much as I want a world in which no one would think to bully them, I want a world in which it wouldn't take a hero to befriend them, either. 

That begins with parents, even those of us who have other kids with disabilities. The initial quote was from a mom who also has a child with Down syndrome. While I get her pride, I hope she kept it cool with her daughter. I hope she stayed away from the traps of pity and superiority and focused on the friend and not the disability. 

It is said that disability is natural. So is friendship. Let's start there.