Saturday, August 17, 2013

Quirky II: What Came Next

Quirky II –What Came Next

(Note: It's helpful to read Quirky I to know what the heck this one's about. But whatever. I'm just so glad you're here!)
Cliff sat on the examining table in the windowless room, patiently listening to me talk. He was giggling to himself, offering an occasional nonsense word to no one in particular, but completely aware and curious. He is always in this world, even when you think he isn’t. Moments before, I had seen a look of surprise cross his face when Ben, the young man who interns in the Down syndrome Clinic at Mass General, came out to the waiting room to fetch us. Like Cliff, Ben has Down syndrome too. Cliff didn’t expect that.
"Cliff Taylor? Hi, I’m Ben. Come this way.”

“Have you ever sought help from professionals before?” Allie Schwartz, a lovely, dark-haired young doctor, sat at a small desk taking down any information I had not included on the intake form.

“Sure,” I replied. “We’ve spoken to his primary care doctors, his teachers, a psychiatrist, a psychologist, a neurologist, behavior specialists, and Dr. Crocker.”  The late Dr. Allen Crocker was a pioneer and expert on the subject of Down syndrome, well-loved and highly revered by everyone who knew him.

“And none of them was able to provide you with answers?” Dr. Schwartz spoke with a gentle curiosity, and listened intently to everything I said. We had waited two months for this appointment and now that we had finally arrived, the floodgates were about to burst open. I was either going to cry in front of this woman or start talking in that agitated, exasperated way that is never a good idea. If I had had any sort of reasonable explanation before, I would have saved myself the trip. But I hadn't had any sort of reasonable explanation, and we were all getting older by the second.

In this little room with Dr. Allie Schwartz listening, considering every word, and Helen, the social worker sitting to my left, I let it all fly. I was frustrated at the paucity of the kind of information I sought and particularly at the lack of connection among the agencies created to help families like mine. How many books have I read? How many articles? I’ve lost count of them all. I’ve lost count of the questions, the experts, the conversations, the appointments, the medications. For a long time, my husband and I simply accepted the fact that our child was not typical of people with DS. It didn’t matter to us. It doesn’t matter now. We love who he is. Everyone who meets him loves him; he’s sweet and funny, amiable and flirtatious. He's proud of the medals he's won at Special Olympics and knows instinctively that Grandma is lonely for Grandpa and needs a longer hug than usual. He has pet names for his brother and sister. He'll shyly extend his hand for a handshake when he meets someone new and is genuinely happy to meet you. He’s perfectly wonderful. Except when he isn’t.

I had brought Cliff here because I don’t understand him lately, and I have always prided myself on understanding everything about him. I don’t know why he is almost never quiet, why he makes so much noise, why I have to ask him to please use an inside voice every time we’re at the store, why he has vocal tics, what I’m not doing that I should be doing to ensure his happiness and well-being.

This is what I told Dr. Allie Schwartz that afternoon, in the windowless room with Cliff sitting on a table. I wasn’t looking to “fix” him; parents like my husband and me operate from a deep desire to make life better for our kids. In our estimation, Cliff’s behaviors had closed some doors over the last few years. We need to figure out how to throw those doors open again.

Dr. Schwartz understood all that, and made her recommendations. She wasn't sure what might be at the root of the difficulties I had listed. By the end of the visit I had at least come away with a plan of action. We would make appointments to see two more doctors: one would do a sleep study to rule out, or in, sleep apnea. The other was knowledgeable about Down syndrome and the difference between quirks (the word I’ve often used to describe Cliff’s shenanigans) and actual medical or psychiatric diagnoses.

After she left, we met with the nutritionist, who told me Cliff is nineteen pounds overweight. Ben returned with his iPad to give us a presentation on sleep apnea, complete with a photo his mom had taken of him wearing a C-pap mask as he slept. Helen the social worker gave me information on a place called Friendship Home, which was very exciting; If we were willing to travel an hour away, Cliff would have the opportunity to make a new set of friends and spend an occasional weekend with people his own age. Finally, we talked to a woman in charge of research, and I signed off on their use of the information collected as a result of Cliff’s visit. I’m completely on board if they can use it to help develop a clearer picture of individuals with Down syndrome.

In the days that followed our visit, friends and family inquired about the outcome, and each conversation reminded me of the tee shirts tourists bring back home from trips to faraway locales. The ones that say, “My mother/father/grandpa/grandma went to Tahiti and all I got was this lousy tee shirt.” They were expecting fancy cigars and chocolates, so they seemed slightly disappointed.

I understand their feelings completely. I went to the Down syndrome Clinic filled with unreasonable expectations. I realize that now, but despite the unanswered questions, I continue to be hopeful. I’m on the right road, traveling with people who are familiar with the terrain around here, and pointing out the signs I need to follow.
Like Ben said, "Come this way."

Monday, August 5, 2013

Maxwell James, Age 10

 He’s a grown man now,
Full of my instructions.

I taught him to understand

remorse, how brave we must be
To admit when we are wrong.


My neighbor said my son had
Teased hers, who was autistic and

Felt cruelty like anyone else.
He had been crying for an hour

At my son’s betrayal.


I asked him how it would feel
To watch a bully tease his own brother,

Older by six years but fragile and exposed
to the same kind of cruelty.

His face grew hot with red shame and contrition,
That day’s lesson of thou shalt not.


He told me he was sorry and begged me not to make him go.
I watched from the driveway as he slump-shouldered

His way slowly across the lawn, tear-streaked,
His superhero sneakers scuffing the dirt.

My heart seized in my chest as he raised his fist to knock.


He’s a grown man now,
Full of my instructions.

I raised him to remember compassion,
Feel the weight of his power

to choose.