Yesterday, as I put away the last remnants of Thanksgiving and turned my attention towards Christmas, I was again struck by how grateful I am for so many things in my life. I am grateful for a family that loves to play games, watch movies, tell stories, craft practical jokes and spend time together. I am grateful for my creative daughter, who enabled me to put names to faces and images to places through an impromptu college slideshow. I am grateful for a sister and close friends who make my life richer. I am grateful for Southern California weather and the fact that it does not seem the least bit odd to spend a lazy Saturday in November at the beach.
This morning, Nick reminded me of something else for which I am grateful - the opportunity to be his mom. Our children impact us all in both subtle and obvious ways. Nick is teaching me to find humor, and dare I say joy, in the unusual. This is a good thing.
I've always been shy and easily embarrassed. As a child, my shyness was limiting. Large social situations were daunting and, I am told, caused me to hang back at neighborhood parties. In high school, I asked my parents to stay away from track meets because I didn't like the attention. As an adult, I remember feeling uncomfortable when my sister-in-law nursed my nephew in public (in my defense, 22 years ago it wasn't as common as now). I even remember a few years ago, fighting the urge to close the car windows as my daughter belted out Don't Stop Believin' at the top of her lungs, while blasting Journey from the CD player in our Suburban. To further illustrate the point, I don't prefer to call in orders for takeout food, I don't like celebrating my birthday (except with a very small group of friends) and I still look for excuses to avoid large events. It is just the way I am wired.
Nick has his own agenda, which frequently conflicts with mine. And guess what - he doesn't care. At all. Nick finds joy in many of the same things that put me on edge. He loves riding in the car with the windows down, blasting Eminem songs and singing along. He loves talking at the top of his lungs when we go for evening dog walks around the block. He loves making silly faces when posing for pictures - anywhere and everywhere. He loves rocking out to Guitar Hero at Dave & Busters. He takes longer showers than his sister and doesn't mind being late. His current favorite activities are locking me out of the car whenever he can and avoiding me whenever someone else he knows is nearby. Loving Nick leaves no room for shyness or embarrassment.
So I am being forced to change, but it isn't always easy. Nick often wakes up with ideas. In September, he went to school in all UW attire, purple cap included. Last week he smuggled three recent sports trophies to school to show his wrestling coach. This morning, he woke up and decided to wear a clip-on tie and use his dad's old black briefcase instead of his backpack. Neither fashion accessories are cool in high school. So there it was, my test.
Now, I won't say I didn't try to persuade him to take off the tie and leave the briefcase at home, because I did. But after he left the house I thought to myself, this is easier for me than pink hair and a nose ring. And so it goes.
I started this post in the midst of packing up my daughter for college. Visiting her this weekend reminded me of it, so I am posting it now.
On Saturday night, my 18-year-old daughter, Lauren and my husband Bill decided to go on a Sunday morning hike. Morning came and when Bill went to wake up Lauren, he found Nick as well, cuddling and fast asleep. Bill leaned over Nick and whispered to Lauren “It’s time to wake up to go hiking.” Nick opened his eyes and responded “I wanna go too.”
Plan B - four Halles are going hiking. I am hiking with Nick and Bill is hiking with Lauren. I start gathering supplies. I fill water bottles, find backpacks and grab the sunscreen. Certain that the Dad/Lauren team is going to take longer than the Mom/Nick team, I also throw in a deck of playing cards, a football, and the 39 Clues Book that Nick and I am reading. If we are going to be waiting for them to complete their hike, I want to make sure we have plenty to do.
We get to the trailhead and the setting is perfect. It is overcast, cool and surprisingly uncrowded. Nick and I walk over to the trail map and pick our route. Hiking with Nick is just like walking with Nick. The pace is steady and comfortable, not quite a saunter, but not brisk. Conversation starts slowly, but as we begin to see interesting things, it picks up. The trail we are on passes a housing development before veering off into more natural surroundings, so we spend the first part of the hike talking about how it doesn’t seem like hiking when there are houses all around us. About 20 minutes into our adventure, the houses fade and a beautiful view of mountains and the ocean appears. We are on a fairly broad and well-traveled path, so finding uncommon “points of nature” is a bit challenging. We look at flowers and cacti. We examine rocks and ridges. We see birds and evidence that other animals have crossed the trail (we can identify the horse’s gift, but I am not a scat expert, so we make guesses as to the others and decide none of it comes from a dinosaur). We talk about our favorite animals and Nick’s morning picks are alligators and snakes.
And so the hike continues. We venture off the main trail and wander for a while on a slender winding path. It is peaceful. Periodically, we come to a large downhill section of trail. Each time I say to Nick “Do you want to go down this big hill? We will have to climb back up to get to the car.” Each time Nick says “Yes!” So on we walk. Walking and talking, making up stories and looking for signs of living things bigger than flies. We lose track of time.
When we get back to the main trail, I glance at my watch and realize it is late. As we head back to the car, the sun, which had been taking its sweet time to emerge from behind the clouds is now blazingly bright. Nick changes from the black T-shirt he had picked earlier in the morning to the white T-shirt I had packed in anticipation of the heat. Despite being tired, hungry and hot, Nick keeps on hiking, sweating as he climbs back up the series of small and large hills.
My cell phone vibrates. It is Bill calling from the car and wondering where we are. Nick and I realize that we have out-hiked the Dad/Lauren team and arrange to meet them in a few minutes. We listen to a few Beatles songs for distraction on the last large hill and see Bill and Lauren waiting at the top.
When we return home, I unpack our gear and smile as I put away the unused cards, football and book. Nick is growing up and, as he does, I am going to have to increase my expectations for him. It is a thought that sits well with me after such a nice morning hike.
Starting Out Pausing for a Pic
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
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.
This morning, I stumbled upon a George Will article about his son Jon from last year, when Jon was turning 40. Reading it reminded me not only about how far we have come in the Down syndrome movement, but how instrumental people like George Will (through his well articulated and direct articles about Jon and Down syndrome) and Madeline Will (through her life-long dedication to advocating in Washington for the rights of people with Down syndrome) have been in getting us to where we are now. They are not alone. Carlene Anderson Mattson, Ricki Sabia, Sue Buckley, Patricia L. Oelwein, and countless others, through their hard work, determination and beliefs in people with Down syndrome's rights, have made our children (and our) lives better. They have fought and won game changing battles and continue to drive change. We do not thank them enough. So today, I think of you all, and thank you for the work you did and do that enables my amazing 14 year old son with Down syndrome to sit in a classroom in our home school, learning about art, chemistry, multiplication, language arts and volleyball. Thank you!!
