Monthly Archives: January 2016

Outlier

Jack and I had a long home-bound wintry snow day. We went to McDonald’s twice (or two times too many), simply to get him out of the house. We can’t go to public places on weekends like regular people because of unpredictable behavior problems. Jack won’t wear winter clothes and go outside to play. It’s cold and wet out, and inside he gets really bored. The end.

I was able to leave for a few hours this weekend to run some errands. As I was out and about doing things and talking to people I kept thinking, “I am acting like a regular person doing regular person things. But wait, it’s a facade.”

I am an outlier.

My days are so weird and so different. Life with Jack’s limitations is so completely beyond the everyday, the normal. This is okay—it’s just life with Jack and I accept it. I regret nothing. It’s good.

The weirdness happens when I engage with people and try to act like my life is a regular life. I find myself thinking, “This is what people talk about when their life is typical. This is what people do and say and buy and focus their energies on when life has normal problems.”

Regular people do regular things. Many regular things are out of our grasp. This makes me feel other.

Jack shredded piles of newsprint and a Cabela’s catalog today, a benign sensory activity that didn’t involve eating (his preferred sensory activity), but that did involve me cleaning up 87,000 little bits of ripped paper.

Tonight I rubbed Jack’s legs and feet while singing him lullabies, because though he is big, he is still inwardly little.

This is not a lament. I do not intend to whine.

It’s only a realization that sometimes I am with people, but I am separate, as though surrounded by a transparent film—an invisible separation.

And yet, I can’t think I’m the only one. 
  
 

Dear Blog

Dear This Blog,

I’ve been having a hard time with you, of late.

The only things I want to say to you aren’t heartfelt treatises on the beauties found in the struggles of life.

Turns out, the things I’ve got to say are raw, difficult things—things so real they make me feel guilty for sharing.

But, my blog, you are mine. And this is what’s inside me.

So I will tell you about behavior problems.

Blog, I had dinner recently with two friends who have children sort of like Jack, at least in the unpredictable violence/aggression/destruction arena. We ate carbs and cried a little as we talked about what it means when your child has behavior problems.

When your child has a disability which inhibits a) impulse control, b) communication, c) the ability to wait, d) social and emotional maturity, or e) coping with disappointment, strange things happen, and they happen so regularly that they become part of the daily landscape. “Normal,” if you will. But not, actually.

Things like:

  • broken windows
  • holes in walls
  • dents in floors and refrigerator doors
  • broken appliances (kid stepped on open dishwasher door, etc)
  • paint on carpet
  • shredded rooms (scientific term for a room that has been dismantled by a special needs minor in less than five minutes)
  • glassware thrown across kitchens
  • toys lobbed at people and walls
  • biting
  • punching
  • kicking
  • screaming
  • raging
  • manic pacing/running as if on speed
  • waking up at four or five am
  • staying up until midnight

It’s not an exhaustive list, dearest blog, but you get the picture.

These behaviors do not happen all the time, but for a family like mine, some of them happen daily.

My friends and I discussed, as we carb-loaded, the difficulty with severe behavior issues. We decided that one of the biggest concerns we have is that people are horrified by violence in children. It is not something people understand. It’s foreign. It’s disturbing.

It’s borderline shameful.

One should not openly discuss the fact that one’s mentally disabled preteen throws things at one’s head.

It makes people uncomfortable.

It makes me uncomfortable.

Little blog, while I do not like the daily house destruction or sometimes having to guard myself and my children from the disabled son’s outbursts, it is most painful when other people see the nature of our behavior problems.

Others do not live with Jack and know his goofy sweetness.

If you only see his behaviors, can you recognize his goodness and purity?

Will people see Jack’s bravery for living life in an unwieldy body with a mixed up brain?

I love Jack. I hate the behaviors.

Thanks for listening, blog. You remain a lifeline.

xoxo,

Megan

A Game of Beach Reads

I can always tell when the crazy ratchets up a few notches in my life, because I lose the ability to read anything substantive.

Books are the canary in the coal mine, revealing the state of my mental health.

When I’m losing my marbles because everything is more wild, I can’t focus on anything literary or even remotely challenging. Reading remains a lifeline, but it is for purely escapist purposes. It isn’t allowed to demand anything from me, other than a willingness to sink into a plush story which exists solely to entertain.

I’ve become that person at book club who’s all, “Nope. It didn’t happen this month.”

And then I go back to reading A Game of Thrones.

And drinking Cherry Coke, because as Dutch likes to remind me, hiding in a cocoon of fantasy and intrigue and totally made up countries and people is better than an alcohol/prescription drug addiction.

Quotable Truman

Things that Truman has recently said:

  1. “Charlie is using the zizzers.”
  2. “I want to be thirst!”
  3. “I’m firsty, mom.”
  4. “It’s too bright! The sun is looking at me!”
  5. “I made a penguin at preschool. I like it.”
  6. “It’s in the rondry room.”

Be Glad

There was an LDS General Conference talk last October that people are referencing like crazy, including me, apparently. The message was that if you pray and ask what you specifically should do to change, improve, and feel peace, the spirit will tell you.

So I tried it, because I’m always looking for a hefty dose of peaceful.

This is what happened:

  1. I felt nervous. What horribly prickly thing was God going to ask me to do? Because when you ask sincerely, you’d better be ready to follow through and do that thing, yo. And it might be wildly difficult (see: my life).
  2. I didn’t get an answer. Really. I just didn’t. Nothing.

Until..many weeks later. Like, months later. I went to church and felt how I usually feel on Sundays, which is wrung out, jaded, and desperate.

Sundays are rigorous and predictably painful because special needs kids and church/Sabbath day expectations/lack of structure/quiet activities/etc. don’t mix well. But that’s old news.

During sacrament meeting, I broke up a fight between Charlie and Truman over coloring books (for real) and immediately after settling the scuffle, God said this to me:

“Take care of Jack and be glad.”

He answered me and it was pretty darn clear so, naturally, I pondered. 

I came away with a sense that God doesn’t want me to add on other hard things in addition to raising Jack, or to feel guilty about having little left over to give after taking care of Jack.

Take care of Jack and be glad.

It sounds simple. But God knows this is a hard task He gave me eleven and a half years ago. He gets it. It’s a lot and it’s enough. And He totally knows.

His only new advice was to be glad.

Be glad Jack is growing and changing and mostly happy. Be glad he has red hair and creamy pale skin with freckles. Be glad he makes us laugh and reorders our priorities. Be glad he has brothers who understand him. Be glad for the vibrating foot spa that keeps him occupied with sensory input.

Be glad that life is very, very real with Jack among us.

 

 

Raising anxious children is my Everest

This morning as Truman screamed at me to fix his train tracks (which I had just rebuilt for him), I shut my bedroom door, locked it, and curled up in the armchair with my fingers in my ears.

This was how I prayed for patience to handle my preschooler today.

I’ve been kind of blue for awhile, not in a major, nonfunctioning kind of way, but enough that I’m lethargic, snippy, and prone to fall to pieces when people cram muffins between the couch cushions.

Currently, it’s daytime and light outside and my belly is filled with croissants, so I feel I can effectively examine this demon that is plaguing me.

I am content with the progress we as a family are making, so why am I so crabby? I’m getting enough sleep, so why am I so sleepy? Basically, what is my problem?

I’m not sure, but I may have figured it out. And, as usual, it comes back to fear.

I’m fearful that Truman’s anxiety is going to do me in. I’m afraid of what it is going to take to potty-train this anxious four-year-old. I fear how anxiety which manifests so cripplingly in a preschooler will play out as the boy ages. What will this mean for him and, by extension, me?

And the big one: can I handle yet another mental health issue in this household? Because my metabolism and my mood are telling me no.

This is difficult for me to talk about. Weirdly, I feel like I should hide the fact that my youngest son also has a diagnosis and that it, like all his brothers’ diagnoses before him, is killing me softly. Because it is just anxiety doesn’t make it easy. Of course it is much less consuming than Jack’s pervasive cognitive delays and communication deficits. And according to the psychiatrist, it isn’t autism, or even a super great cause for alarm.

It’s just anxiety. And yet I’m unraveling because of it, just as I did with Jack’s M-CMTC diagnosis and Charlie’s autism/anxiety diagnosis.

Despite my inward struggle, I have identified some things I am doing differently with this new behavioral health challenge for my youngest son:

  1. I’m less panicky about time and it’s passage. I’m not so concerned about how long it will take to work through Truman’s anxiety issues. My perspective of how time moves has changed. Seasons ebb and flow, and, thankfully, do not last forever.
  2. I’m exceptionally good at getting in to the right doctors, who can hook us up with the right meds. And I’m really good at ignoring pharmaceutical non-believers.
  3. I more readily give myself permission to chill on the afternoons when Truman goes to preschool, and by “chill” I mean climbing under my electric blanket and down comforter, silencing my phone, and sleeping deeply.

So there it is. Jack is less violent and more content, yet still entirely a full-time job. Charlie is making progress but is still anxious and still on the spectrum. And Truman faces mountains of his own to climb. It feels better to just say it. Because “it” is real, and really difficult.

It’s the doing that means something

I read an article today that someone linked to Facebook. It talked about the fairly common feeling of not doing enough or being enough—not making a big enough difference in the world. I’m not sure why most of us feel this way, at least some of the time. It’s the sense of being a fraud, of not actually being as smart, capable, creative, or intuitive as we let on. And it seems to be pretty universal.

I’ve been cleaning my house to rid it of germs and to ceremonially reclaim it from the children who have been messing it up hard core these past fourteen days of Christmas break. While it might be a cliché, as I swept and vacuumed, Lysol-ed and laundered, I had an epiphany. I scuttled around in my sweats and socks trying to banish the mess, and I understood cleaning as a process, not unlike the writing process which I practice and which I teach my students.

Much like writing isn’t simply about the finished piece, keeping house isn’t so much about achieving cleanliness (which is über-fleeting anyway) but about the act of cleaning. In case you’re thinking of recommending it to me, I haven’t read that bestselling book about how tidying up your house is magical and transformative. I haven’t felt the need, since I already throw things away  with wild abandon, often before they have exceeded their usefulness. I don’t need a book to tell me that cleaning up and clearing out is a good idea. I believe it.

What happened this weekend is that my mind felt like an extension of my arms and hands as they wiped, scrubbed, washed, folded, and picked up. Together, my body and my brain organized (most of) the house and both felt better for it.

I learned in one of my graduate seminars back in the day that the act of writing something down can cement it in one’s memory, even if you never revisit or re-read what you’ve written. Just writing something imprints it in our minds. Maybe just caring for things like sick little people and a messy house does something similar: the process of doing it makes it real and valuable, and however it turns out isn’t the point. It’s the doing that means something.

This is a sea change view of life for me.

I’m seeing things afresh.

My boys’ behavior/speech/occupational therapy is not a means to an end, but is a valuable process and routine, and that’s enough.

Eldest son’s basketball passion does something good to his brain, while his body runs and shoots and blocks. Wins are nice, but just playing is a win.

I had another article accepted this week for publication, which was great. But my satisfaction is at just having written it down. The thoughts had percolated for some time, and now they are out.

There is value in the objet d’art and the cleaned house and the changing person, as there is significance in the struggle to create it.

And while it is the visible part, the end result is simply one piece of a larger process.