Wednesday, October 3, 2018

What Do You Mean "Everyone Isn't On Facebook?"

Once the social media train really got rolling, I stopped writing observations and stories through this blog and started posting to my personal Facebook page instead. What I failed to realize is that not everyone uses Facebook! I was aware of this intellectually, but I only had two friends that rebelled against social media, so the ease and casual interface of Facebook attracted me.

When we recently overhauled our website to include a blog, I thought I would again begin sharing casual stories about Nick and Down syndrome, but once complete, the website quite appropriately felt more professional than personal.


On October 1st, I posted to Facebook about Down syndrome awareness month and Nick. Yesterday, I was asked by a friend if she could copy/paste the post and share beyond Facebook. I wasn't quite sure how to respond. I wanted to say "yes, of course," but the idea of my words and Nick's picture out in cyberspace without any context felt odd.


So, for that friend, and any others who want to know my thoughts on Down syndrome this week, here is the Facebook post. Feel free to share with anyone you'd like. I might even be prompted to write a bit more often. Working with the 30 students weekly who are part of DSF's After School Academy has given me a lot of food for thought!


*********************************************************************************

This is the Facebook Post (of course, outside of FB now):

It has been grand to see all the posts today in celebration of Down Syndrome Awareness Month - October. Some parents will post information and share photos every day this month. Others will share their joys and challenges, answer common questions about Down syndrome and/or dispel myths about Down syndrome. At the end of the day, each of us want the same thing: for our child with Down syndrome to be welcomed, supported and included in our communities, in our schools, in work places, in living spaces and in recreational opportunities. We want equal rights and respect. It doesn't seem like such a big ask, but the road towards equality has been long, hard and slow. We have far to go.

I am forever grateful to all of the parent advocates who fought the good fight before Nick was born (among others, Madeleine WillRicki SabiaStephanie Smith LeeCarlene Anderson MattsonMerilee Bennett, and Sue Buckley). They have all changed the world so that Nick and all people with Down syndrome have better lives. Thank you!
For those outside the Down syndrome community, if you feel left out, you should. Some of my favorite people on this planet have Down syndrome, and if you don't already know someone with Down syndrome - get to know someone - this month is a great time for new friendships!
Once upon a time, before Facebook, we would write a yearly letter for the Visions Gala about our experiences with Nick. If you are at all interested, those letters and a few blog posts are accessible at https://thoughtsondownsyndrome.blogspot.com/.
One final thought. Today Nick and I were early for his college class on critical thinking. We went to Starbucks, picked up drinks, and got to campus early so we could sit on the deck overlooking the ocean. It was warm, but a cool breeze was flowing off the water. It occurred to me in that moment, that I was exactly where I was supposed to be with exactly the person I was supposed to be with - Nick. The thought made my heart happy.
Much love to all friends in and beyond the Down syndrome community who have joined us in supporting Nick. We could not do it without you!

Thursday, August 14, 2014

All's Well That Ends Well

I woke up excited for Nick's day. He had been invited to participate in a fitness event sponsored by the Professional Baseball Athletic Trainers Society at Angels Stadium. This two hour event included on the field health and fitness activities with trainers and players from the Angels - a seemingly perfect fit for my baseball loving fitness fanatic. As an added bonus, two of Nick's friends would also be joining us. Baseball, buddies and a workout - who could ask for anything more?

We arrive on time, which is not always the case, and quickly find out sponsor, the Arc. Hiccup #1 occurs when we receive our event T-shirts. Nick points to the RVCA shirt he is wearing and says, with emphasis, "This is my favorite shirt." I explain to Nick that I like his shirt too, but he has to wear the event shirt on the field. I ask him again to put the shirt on. He just looks away. At this point, I notice that the T-shirt has some tags at the neck. Nick has always been sensitive to tags. So I ask him, "If I can cut the tags out, will you wear the T-shirt?" He nods yes, so I set off to find a pair of scissors in the stadium parking lot. Luckily, the Executive Director of the Arc has a pocket knife in his car and, between the two of us, we manage to cut the labels from the shirt. Walking back to Nick, I proudly hold up the T-shirt so he can see that the tags are gone, but he is unimpressed and refuses to put on the shirt.

Acting more relaxed than I feel ("COME ON NICK, JUST PUT ON THE DARN SHIRT"), I tell Nick that he can hold the shirt up for parking lot pictures, but that he has to put it on to get onto the field. He shrugs at me and holds the shirt up for pictures.


[Notice the sassy teenage look he gives me]

Once inside the stadium, Nick quickly puts on his T-shirt (?!?) and we find our group. The morning officially begins and we hear introductions, explanations and break into smaller groups. Within minutes, we are on the field. Our first station is led by Rick Smith, who has been an athletic trainer for the Angels for over 35 years. Rick splits our group into two teams and walks the kids through the circuit they will be following for the first activity. Hiccup #2, Nick isn't on the team with his friends. He looks at me with a pleading face. I think about it a moment, then walk over to Rick and ask if Nick can switch teams. "Yes, of course" he says. Now the teams are uneven, but Nick is happy. If Nick is happy, I am happy.

As the first participants start to work through the circuit, Nick is standing apart from his team, so I suggest he get in line for his turn. Hiccup #3, he doesn’t want to be in line. "I want to work out at home, not here!" he says.
"What?" I ask. "You get to do squats, jumping jacks, footwork and running - your favorite - it looks fun."
"At home," Nick says, with a dismissive flick of his hand.
"Okay, well you can just stand here and watch." I reply. And so he does.

For the next 15 minutes, Nick watches everyone else in the group do the circuit. Actually, they each run through it three times. I really wish I could read his mind at these times. I wish I knew exactly what to do or what to say to give him the power to let go and have fun, but I don't. If I was guessing, I would say that he doesn't like competitive situations against typical peers and that having this activity set up as a race makes him nervous, but I am not certain. Even if I am right, I can't change the activity just because Nick doesn't like it. But I also know that Nick is often more bold when I am not around, and that is something I can fix. So, I tell Nick I am off to help some other participants, let my fellow parents know my plan and leave. Well, I don't really leave - I just walk towards the tunnel that leads to the bullpen and stand behind the padded wall. Nick cannot see me.

From my new spot, I watch Nick talk with a parent, talk with a buddy, and refuse to do the second activity. Hiccup #4, my plan isn’t working. He still isn't participating. But I am in the shade and it is a hot morning, so I stay put.

On his way to his third station, which is in the bullpen, Nick walks right past me and gives me an odd look. I say hello and return to my conversation with another mom. I check on Nick a bit later and find him sitting on a bench listening to a trainer talk about the dangers of performance-enhancing drugs. I can’t hear all of the details, but Nick is listening and looking very serious.

After station three, Nick heads back to the field for the fourth and fifth stations, which seem to involve throwing and catching practice. Another parent comes running over to me for Nick’s glove. Nick has fairly solid ball handling skills, so I am hoping he will participate, but when I look for him, I see him sitting down on the grass.

Clearly, the morning is not going as planned and I make a mental note to think twice before signing up for a similar event. The next time I look around the corner, an Angels player is talking to Nick. It looks like he is encouraging him, but I can't tell. Nick goes to the wall to try for a catch. He catches the first ball, but misses the second. He did it! A few minutes later, I see him talking to the same player and they start playing catch. I am pretty far away, so I can’t see who it is, but when Nick walks back to me, he is holding an autographed baseball and has a huge smile on his face. I snap a few pictures of Nick on the field. He has a happy "too cool for school" stance.


[Note the autographed ball in his right hand]

We finish the morning with a question and answer session. I learn that the Angels player who interacted so kindly with Nick is relief pitcher, Mike Morin, #64. I am an instant fan. Morin has a good rapport with others in the crowd as well. A young girl shouts out that her sister is 21 years old and wants to marry him. He smiles and gives the crowd a look as if he is considering it.

We get back to the parking lot and Nick switches back into his RVCA shirt and hands me his glove. “Do you want me to hold the ball too?” I ask. “No,” he says. In addition, the Angels have also given us tickets to tonight’s game against the Phillies and Nick lets me know that he wants to go. He holds onto his autographed ball the whole drive home.

Today reminded me that Nick needs to adjust to and become comfortable in situations with new people and new places before he can enjoy himself. He is shy and isn’t a “go with the flow” kind of kid and that is okay. Today, Nick needed extra time on the field and supportive interaction from the adults around him. Once he had that, the event turned into what I am sure will be one of the most memorable days of his summer. It was a good lesson for him and for me.

I needed today's success too. Not every event ends on such a positive note, but many do. I need to remember today so I have more patience and a broader perspective next time he refuses to put on a T-shirt in a parking lot or stands by while others participate in a seemingly fun activity. I need to look at situations more impartially and recognize, in the moment, when Nick needs additional time and support, not at midnight as I reflect on our day!


[Thank you dear friend on the field who snapped this picture of Nick!]




[Mike Morin #64 - love that guy - signing a ball for Nick]


[The Ball - at home on his dresser]

And, of course, Nick got to go to the Angles game with his dad, eat hot dogs and cheer on the team. The Angels won!


[And yes, that is his favorite shirt under his Angels jersey!]

Special thanks to the Professional Baseball Athletic Trainers Society for hosting the event, the Arc for inviting us, Kellie Perez/DSAOC for letting us know about the Arc's invitation and, of course, the Angels training staff and players (especially Mike Morin) for giving their time and making it such a special and memorable day!



Monday, December 2, 2013

Walk To The Beat Of Your Own Drum And Teach Mom A New Song

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.

Sunday, October 13, 2013

Adjusting Expectations

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



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.



Tuesday, April 2, 2013

A Morning of Gratitude

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!!