Saturday, July 20, 2013

A Walk Around The Block

Those of you who know Nick know that he has a wonderful economy with words (and yes, I am borrowing the line from the movie Arthur). It’s not that Nick doesn’t have a large and diverse vocabulary. It's that he often chooses not to use his words. But, if Nick cares about a subject, he can and will talk about it - and he cares about a lot of things.

Watching WWE (World Wrestling Entertainment), Nick can identify each wrestler by his or her stage name and real name, while listing their signature moves. Want to play Xbox’s Call of Duty: Modern Warfare 3? Nick can run circles around my husband and me, while talking about using primary and secondary weapons, semtex, sniping and defending against juggernauts. Listening to music? Nick knows the lyrics to most songs by the Beatles, George Thorogood, Queen, Eminem (yes, the rapper and yes, the bad words too), and he sings, loudly. As hinted at above, Nick is excellent at remembering names. Whether it’s the first and last names of classmates, the names of historical figures, the names of basketball or football players or the names of your pets, he remembers. He also knows what happened in almost every episode of The Simpsons. The list goes on. Yet Nick is often quiet.

Nick is quiet - in large groups, with new people, when he is tired, when he is angry and when he just doesn’t feel like using his words. When asked “How was school today?” Nick’s most frequent response is “Good.” When asked “What would you like for lunch?” the usual answer is either “Beans and cheese” or a shoulder shrug. On the first day of a recent two day trip with Nick, we had a conversation that went something like this:

Me: Nick, when people eat a meal together, a large part of what makes it fun is talking to each other.
Nick: Silence.
Me: We are going to be alone together for the next two days. If we don’t talk to each other, it is going to be very quiet.
Nick: Silence.
Me: Would you like to play Touch Hockey (on the iPad)?
Nick: Yes.

You get the idea. It isn’t that Nick can’t talk. It’s just that he often chooses not to talk.

That is why this week’s dog walk was so darn pleasant and surprising. It was dark out. Nick’s dad, Bill, was working late and his sister was out with friends. The dogs, who had been cooped up in the house for most of the day, were restless. “Let’s take the dogs for a walk around the block,” I suggested to the boys. And out we went. Patrick (Nick’s 16 year old brother) and I talked about the day. Nick was quiet. Patrick and I talked about how much Max, our 2 year old Doberman Pinscher, was pulling on his leash. Nick was quiet. Then Nick suggested (no kidding) that we play a “no talking” game. This is a real game he and I play when we walk the dog alone. The idea of the game is to see who can keep quiet the longest. The joke is that he thinks it is great fun to start talking as soon as I say “Ready go!” The irony of the game is not lost on me. When I want him to talk, he doesn’t, and when the goal is silence, he can’t wait to talk.

So we start to play the “no talking” game. Each time I say “Ready go,” Nick loses because he is the first one to speak. We all laugh and Patrick and I exchange knowing smiles. Then, as we round the corner of our block, Nick says “I read the Outsiders book and saw the movie at school.” I say “Really?” He says “Yes, Tom Cruise was in the movie.” Now I barely remember the book, and I certainly don’t remember Tom Cruise playing a role in the movie adaptation, but I go along with it. “Wow” I say, “what is the book about?” Nick responds, “It is about the socs and the greasers. The socs were rich and the greasers were poor and they get into fights.” “Really?” I respond, looking at Patrick with widened eyes. “Yes,” Nick continues, “and the girls in the book are named Sherri or Cherry and Sandy. And the boys are Ponyboy, Sodapop, Darrel, and Dallas.” “You remember so many of the characters. That is great,” I reply. “What happens at the end?,“ I ask. “Johnny dies in a fire and Dallas dies from the police,” Nick responds. “I really like when you tell me about books you have read,” I say, as we arrive home.

My thoughts after our dog walk? I need to accept that casual conversations are not Nick’s current strength right now and spend more time talking to him about the subjects he raises and enjoys. I need to stop pressuring him to speak and replace my “use your words” mantra with more loving encouragement when he does share verbal information with me. And, I need to give myself time to enjoy this over-the-moon happy feeling I have over the fact that Nick read, remembered and shared information from a book he read in school.


The Boy                                                            The Dogs

Monday, July 15, 2013

Getting Acquainted

When Nick was younger, I had the frequent privilege of speaking to new parents about Down syndrome. Some conversations were brief and informational: "Do you know a good pediatrician who specializes in children with Down syndrome?,” "What can I do to help with my baby’s development?” Other conversations were lengthy and personal: "How did you react to the news that your son had Down syndrome?," "What is your life like now?" There was a balance to strike during these early calls. I wanted to give enough guidance and encouragement to be helpful, yet avoid information overload. I wanted to acknowledge the very real sense of loss and struggle these parents were experiencing; yet provide hope for their child’s future. Mostly, I wanted to communicate that although life felt difficult now, everything would eventually be okay. Which is what I experienced and believed to be true.

As Nick got older, I fielded fewer and fewer new parent calls. My focus changed from providing new parent support to providing educational support. I didn't think much about the shift until the past few weeks. This month, I had the unexpected opportunity to speak with two new moms at different points of their journey. One mom, surprisingly, had learned the previous day that her 2-month-old son had Down syndrome. The other mom had an eight-month-old son who was beginning to shows signs of developmental delay, forcing his mom to face the Down syndrome diagnosis more directly. These calls brought back memories of Nick's early years and left me feeling grateful that our family was past those days of adjustment and uncertainty.

Like all new relationships, there is a period during which new parents get acquainted with Down syndrome. This is often an emotionally charged time that many describe as grieving the loss of the child you thought you were having and accepting the reality of the child in your arms. There is so much to learn. From the medical and developmental implications of Down syndrome to the therapies and interventions that can help promote development. While the news often knocks parents back a few steps, most emerge from the ordeal better equipped for love and life.

Bill, Nick’s dad, and I had our own period of getting acquainted. After a fairly rough start, we got ourselves together and formed a foundation to help organize support services in our area. We also began documenting our journey in a yearly letter we called “Thoughts on Down Syndrome” (hence the name for this blog).

As part of starting this blog and letting you get to know me, I thought I would post our yearly letters (there are 12 of them and I have posted them to the blog's "Pages" section on the right navigation bar). If you are working through a part of your journey that mirrors ours, I hope they are encouraging. If you are not a parent of a child with Down syndrome, I hope the letters help you better understand some of special blessings and challenges we face. At the end of the day, we are all parents, loving our kids and trying to do our best. I look forward to getting acquainted with you.

Update 10/9/2018: At the time this post was written, there were 12 yearly letters posted. Now, there are 14. You can find them on the right side of this blog, organized by the year in which they were written.