Monday, November 14, 2011

To the Moon...and Back

“…you said “I am as constant as a northern star.”
And I said “Constantly in the darkness,
Where’s that at?
If you want me I’ll be in the bar”
— Joni Mitchell, A Case of You

An email I sent this morning:

            November 14, 2011, 7:35 am
            To: Just about every therapist and teacher J has ever worked with
            Subject: What J just said

J just jumped up from breakfast announcing:

Mom! I am going to the bath room, I'll be right back!

Then he did!

I wanted to share this to all of you who contributed to this moment with my thanks. It's a rough path when you don't know the way or the destination, but the guidance and efforts of all J's teachers and therapists has kept us moving forward, and increasing our goals. I am so grateful.

Shortly after I sent that email, we were running late to leave for school. I sent J to put on his shoes while I got my coat. A minute later I walked into the kitchen and found that J had dumped a pound of sugar on the floor. And he didn’t have his shoes on.


It is 9 am on Monday morning and I’ve flown in the stars and hit the floor again. I expect I’ll drop further down by the end of the day and maybe back up again. I spend my days at the end of a bungee cord, blindfolded, never knowing if I am going up or down, whether I might hit bottom or spring loose from the harness and fly.

My family and I are becoming increasingly adept at “rolling with the punches.” Mostly this is warmly satisfying. When I deal with some annoyance as just that, an annoyance—not allowing spilt milk or an attempt to make cookies solo or give the cat a bath to raise my blood pressure or reduce me to tears is proof that I am growing, getting better at this parenting / living thing. But last night, when J ruined my oldest son’s art project, and I complemented the older boy on responding so calmly he said, in his understated way “I’m kind of getting used to it.” And I had no satisfaction in it, only sadness.

While we have to learn to get used to lots of things that would send a “normal” family into a tailspin, we have more than our share of high-altitude joy that not everyone can understand. The moments we never let ourselves hope for, the events that we may have actually dreamt about, then awoken, crying, to know it was just a dream. Those times when something happens—something that may look insignificant or trivial to an outsider, are the times when we know that there are blessings in having a special needs child, or in experiencing a loss, or in knowing for whatever reason that life is not always good; not always easy. And though there is still a tinge of bitter in that sweet, sweet moment, that bitterness is the foil that lifts the joy to a higher place. A place that makes me dizzy and is just a little bewildering and brings the realization—the reminder that, to quote Yoda (yes, I must) “Luminous beings are we, not this crude matter.”

Then like Icarus feeling the sun’s warmth at the same moment he realizes the wax is melting, I fall back down—to a somewhat softer landing—and by force of…what? Motherhood? Stubbornness? Hope? Something… I grab the broom and trudge on.

There are times, I know, when the highs don’t come frequently enough to fuel the plodding and the days become so heavy, it’s hard to recall that feeling of joy, those moments of transcending the frustrations and disappointments, the pain and the fear. This is the darkness we all, at some point in life, will struggle against. It’s why we all need support—even those who don’t know how to ask for help.

But today, I’m OK. I can still feel the warmth of that wonderful announcement, of being addressed as “Mom” by my child who didn’t call out for me until he was well past three. The sugar is swept up, and I push ahead with my day. The only thing I know is that I can’t predict how things will go, but if this day brings me down, I know I won’t stay there forever.

Tuesday, November 8, 2011

Custom Guys

My Big Guy really wants to share some of the customized Clone War lego men he's created. Each one is based on a character from the TV show. Sorry some are blurry, he took them with a old camera. Enjoy!

My Big Guy really wants to share some of the customized Clone War lego men he's created. Each one is based on a character from the TV show. Enjoy!

Sunday, November 6, 2011

Stepping out of the Land of Autism

Learning to live with autism was a crash course. We found therapists and specialists. Acquired OT equipment. Did research, took training, learned acronyms from ABA and DRI to RDI and SLP. I can tell you about apraxia, echolalia, sensory processing disorder, weighted vests, vestibular and perioproceotive input and much more. I made new friends, frenemies, and heroes. Temple, Greenspan, Wakefield, McCarthy, Baron-Cohen (not that one, his cousin), I have something to say about them all.

Even looking back, I know it was completely overwhelming and terrifying. I put off things that felt as pressing and urgent as breathing because I quickly learned that it was the only way to avoid drowning. I couldn't tackle diet before I got him into a good school program. How could I think about school before I could sleep knowing he was safe in our home? And trying throughout it all—failing more often than not—to reassure my other boys and meet their needs. Of course their needs grew just as I had less fuel to address them. Learning that their brother had a life-long developmental disability/ difference is not something that a 6 or 9 year old can quickly process and accept. They struggled (and struggle today) to know what it meant for our family. Knowing that when my oldest son imagines his future, his baby brother's care is always part of the picture fills me simultaneously with unimaginable pride and unyielding guilt. This is one of the many dichotomies that now seem to define life in our family.

My son is very, very smart, and autistic.  We need support, but can offer less to our communities than we would like.  We struggle financially, but if I got a full time job and paid someone qualified to watch J and take him to all his appointments, I'd net less than I make part-time. Our boys love each other fiercely even as their respective needs are frequently in conflict. Our various communities tell us that they value our family, however we haven't managed to find a way to participate fully. We feel socially isolated even while we are overwhelmed by the opportunities we have for “getting out”.

This is the struggle that engages us most now.  Now that J is in a great school, has wonderful therapists, is finally feeling good and sleeping well on a special diet and supplements, we have come out of the dark to see that we are a family apart.  All the fun family activities feel like more trouble than they are worth.

Our boy requires a huge amount of supervision and every kind of environment presents some challenges. How can we expect our host or event organizer to prepare for or accommodate a five-year-old explorer with an extremely limited diet reciting a Sponge Bob episode at top volume? Sometimes we hire a sitter, which is a good some-times answer. But between the "special" expense and the guilt of denying J an opportunity to interact (he's the one with the diagnosed need for society, after all), sitters can't fill the gap.

While J needs less supervision in our home, it's a monumental task for any busy family to have guests. As much as we would like to reciprocate the kind offers we receive, we rarely have the energy needed to plan, clean and host. We still crave time with friends but we have simply lost most of our social motivation.

So while we've matriculated from the crash-course that followed diagnosis, and graduated from crisis mode (more or less), there are real, long-term adaptations to make. We are still feeling our way, there's no Thriving in a Special Needs Family for Dummies. How much we need from friends, family, and our various communities is, we've learned, more than we can reasonably ask. Finally, we can now perceive our limits before we smack noisily into them (usually). We back off, tuck in, sometimes even hide out. All the while feeling left out, un-tethered. Our mission now, it seems, is to find out whether we are living in a real-life Catch-22, or whether me might finesse a balance on this rickety bridge between the world and our life in the land of autism.