Feeds:
Posts
Comments

Posts Tagged ‘disability’

Last year, my typically developing seven-year-old daughter had about a 1-minute homework attention span and over 30 minutes of homework daily. You do the math.

I tried everything — pleading, yelling, coaxing, creating a consistent routine, using positive behavior reinforcements and a visual timer — to no avail. Staying focused without having someone physically present to re-direct her attention to the work was simply above her ability. The year started and ended with a lot of teeth gnashing from both of us. The question of ADD hung in the air.

This year’s homework now lasts 10 minutes or less. Problem solved, more or less. No more anger and frustration. ADD is still a question mark, but our lives are more peaceful.

I also have a son who has a number of medical, developmental and behavioral special needs, much more complex than, but including, difficulty paying attention. Though it’s not a perfect analogy, it’s hard not to wonder if something similar could happen to him if the world was different.

The more time I spend “fixing” my son’s various medical etiologies, behaviors, and inabilities so that he can productively participate in society, the more I wonder: Are his disabilities themselves really a problem, or is it society who has a disability?

If his school cannot provide an adequate and appropriate education for him — is that his disability or theirs?

If our town’s recreation department cannot come up with a single activity that he could do with other typically developing peers — is that his disability or theirs?

If my community cannot see his value and seek out ways to include him in their restaurants, plays, activities and events — is that his disability or theirs?

If it does not occur to local business owners that they could one day hire him — is that his disability or theirs?

If my country cannot see the justice in creating a safe and welcoming society for him (and everyone like him) that gives him the supports he needs until all of these disabilities are overcome — is that his disability or theirs?

I’m not proposing that we lower the bar for him. But what if we could raise it just a little for everybody else?

Advertisements

Read Full Post »

The daily grind of life as a special needs parent often feels like a game of Whac-a-Mole. Have you played that arcade game? Equipped with one huge padded hammer, the player attempts to hit small mechanical moles that pop out of their holes. Only one mole can be up at a time, but as soon as you hit one down, another pops up. The faster you hit them, the more there are to hit. Hit the most moles in the allotted time, and you are the winner. Free stuffed tiger to the lady in blue!

For those of you who’ve been there, you know what I’m talking about. Just as we finish addressing one issue, another comes up. Some neurology crisis arises…whack!…then it’s time for IEP negotiations…whack!…cajole our way to a new bus driver…whack!…and it’s time for another surgery…whack!…and the game goes on and on and on.

This past week we saw a new specialist in a branch of medicine we haven’t encountered before. It’s been on my to-do list but we just had so many other pressing challenges to deal with — failure to thrive, regression at school and the death of my dad to name but three. Not trying to sound like a Drama Mama, but I’m just sayin’: this particular specialist didn’t even make it out of our doctor’s recommendations and onto our calendar for five years.

So this week, as we waited in the exam room for the doc to arrive while my son ripped his collection of outdated periodicals to shreds, I reflected on how I’m just whacking away…but kind of grateful that our situation has changed enough that I could even contemplate sitting in this particular office at all.  Another tiny wave of gratitude arose when it hit me that some things can wait. Everyone isn’t so lucky. What happens when all the moles pop up at the same time? One only has one mallet.

Of course, seeing the specialist this week (whack!) led to another referral and another specialist. More whacks to come. But I’m aiming to win that giant panda hanging up at the rafters and I can do this for a long time.

Read Full Post »

You don’t know how it feels to be me.” Tom Petty

Community is a wonderful thing, a place where we feel a deep sense of belonging, a place where we feel seen.  The special needs parenting community has been particularly healing for me. Connecting with people who understand my challenges, my fears and my anger releases or lightens those very same emotions simply through the act of having them observed and acknowledged by someone who I believe understands them. Realizing that instead of just a “me” there is an “us” is a true blessing.

The trouble is that with every “us” there comes a “them.” By finding comfort and community with those who understand what it’s like to be me, I’ve been drawing a ring around the “us.” While I’m not exactly banishing folks who haven’t shared my experience to the space outside of the circle, I’m unconsciously not including them.

This weekend I was on a meditation retreat with the Buddhist nun and wonderful teacher Pema Chödrön. At certain points throughout the weekend, she invited questions from the audience. An audience that I realize now I saw as “them.” People approached the mic, shared their stories, sought advice. People who had no idea about my particular flavor of pain, but who clearly had their own: addictions, abuse, trauma, violence, isolation. It was impossible to not expand my circle to include them in “us.” Our pain is all the same, Pema pointed out. Only the storylines differ.

When I am in pain, I feel isolated, cut off and invisible. Why would I want to inflict that pain on someone else? It struck me that placing someone outside my circle was an act of aggression, of causing that very same pain. It’s a little embarrassing and ironic for a person who declares she wants everyone to be included.

“How did I get so lucky to have my heart awakened to others and their suffering?”

–Pema Chödrön

Read Full Post »