Her Name In Lights

red wings 2015
Last night, at a Detroit Red Wings game, our family of 5 spanned a line of seats in the upper deck. Just before the second period began, the girls’ names popped up on the scoreboard:

GAMETIME WITH GLENDENING
KATHERINE & ELIZABETH TAYLOR

“Look girls! There are your names!” I said as I pointed.

“Isn’t that supposed to have Wil’s name?” Elizabeth asked me.

“Yes, but you girls deserve to have your name in lights, too.” I turned and gave her a big squeeze.

Red Wings players each choose a cause to participate in, and Luke Glendening, #41, is involved with our Down Syndrome Support Team and the Down Syndrome Guild. He is a local man, from Grand Rapids, was a walk-on for the University of Michigan hockey team, and now is in the NHL. Clearly a hard worker, he is very genuine person, and great with our kids. In the program, Gametime with Glendening, Luke hosts a different DSST or DSG family at each home game, and there is typically a meet-and-greet with Luke following the game. Last night was our family’s turn.

For the meet-and-greet, a Red Wings representative had asked for the names of Wil’s sisters as they would each receive personalized autographed photos. Apparently, the representative sent Wil’s sisters’ names to the teleprompter.

I wasn’t disappointed by this name switch. In fact, I was quite happy about it. It’s not always easy being a sibling of a child with special needs.

When Wil was first born, we made trips to the pediatrician’s office every single week, not to mention visits to Mott Children’s Hospital to visit a cardiologist, endocrinologist, ophthalmologist and ENT. The girls, of course, made the trips, too. Then, there were Wil’s therapies. Speech therapists, occupational therapists, and physical therapists came to our home. We would all sit around Wil, and the therapists would move Wil’s limbs, show me feeding techniques and other movements to help with his low muscle tone. The therapists were very skilled and conscientious of including the girls, but the focus of these therapies was clearly on Wil, as it needed to be.

I learned quickly how to incorporate Wil’s therapy into play, and the girls very much enjoyed helping him. They would dangle toys above Wil encouraging him to reach his hands together to cross his mid-line, place cheerios on his food tray to encourage a pincher grasp, help him blow bubbles, and as he began to walk, we would count his steps up the stairs as we followed slowly behind him.
With Wil, the progress is very much like those first steps up the stairs. Slow moving climbs forward followed by many stand stills. Nothing ever moves quickly with Wil. All while the girls were at the age where kids don’t walk, they run, from one place to another.

As Wil grew older, but his speech did not, some behaviors developed. If Wil felt the world was moving too fast, and he didn’t have capability or understanding to tell us to slow down, or express his emotions, he would plop down on the floor in the middle of very public places, or flee out the door to the outside.


One day I made a trip to the post office with Elizabeth and Wil. As we started to get out of the car, Wil suddenly decided, in the middle of the parking lot, that he was not going in, and plopped himself right down. Immediately, Elizabeth bent down, and sweet talked him right back up, and they were holding hands walking into the post office. We made our way safely inside, and stood in line. For about 5 seconds. Wil constantly tried to escape. Fortunately, a kind woman in front of us smiled, understanding the situation, and allowed us to go in front of her. Once we were finally back in the car, and Wil was buckled in, Elizabeth and I both laughed and sighed a huge sigh of relief.

“I guess I know one way to get ahead in line now!” She said.

At the grocery store, when Wil was younger, he would decide on a whim that he was too tired to go on, and sprawl, spread eagle, in the middle of the aisle. The girls and I would prompt him up, and move on. As he’s gotten older, he does not do this like he used to, but just the other day, I had a full cart and was pushing it out the door, and Wil decided, right in front of the automatic door, that he needed a rest. The girls having much previous experience with this, went right to him and got him up without my having to say a word.

In an earlier blog, I wrote about some of these behaviors, and a reader commented that if the girls “stopped in their priorities” and sat down with Wil, and played what Wil wanted to play, then he would not exhibit some of these behaviors. “Simple” the reader said.

It may seem simple, but that is because the complicated is entwined in the simple. The complicated is in “simple” trips to the grocery store or post office. The complicated is in “simple” walks up and down the stairs. The complicated is in “simply” reading a book with their brother. Over the years, the girls have become quite skilled at understanding innately how complicated a simple day can be. They come face to face with their own priorities in slowing down for their brother in the simplest of ways.

Last night at the game, shortly after we saw the girls’ names in lights, we decided to head down to the lobby for some food. We slowly double-stepped our way down the 18 rows of steps with Wil, and on our return we all balanced boxes, as I held Wil’s hand, and slowly double stepped our way back up those 18 rows. The simple is never simple with Wil. This is our normal. This is our every day. We do not stop in our priorities for Wil, we flow. It may be a slow flow, but it is our flow, and even on our hardest days, I wouldn’t wish it any other way.

There were no mistakes made on that scoreboard last night. The names in lights were just as they should be.

 

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