Saturday, July 2, 2022

The Speed of Inclusion



 This summer the alarm is set for 5:45 AM. Not by choice. I am not a morning person in any way. I enjoy sleep.

But I get up every day at that time to make sure Ben gets his medicine, gets dressed and is in the car by 6:15 to drive 10 miles, to the Jr/Sr High School to take part in the summer weight program. 

Young men and women regularly get up early to work on their fitness so they can become stronger athletes. 

Ben does not participate in everything. He is not a fan of the parking lot warm ups, though sometimes is see him doing the stretches by the side of my car. 


Most mornings I bring the puppy along for a good walk. Today I did not. So I walked by myself around this quiet,  peaceful town of 250. 

It is a beautiful walk. 65 degrees, sunny, a gentle breeze flowing.  I took in the bird’s chirping, summer flowers, occasional wind chimes, and the sound of a far off chainsaw. 

Just 2 weeks ago and f1 tornado came by this small Nebraska town. A few trees went with it. Some minor house damage. The tree I used to park in front of is just a jagged stump. Nothing major and no injuries, for which we were all thankful.  Volunteers were out in full force cleaning up the mess.  The pile by the school continues to grow. 


From across town, I can also hear the thump of a tractor tire hitting the ground. The weightlifting boys are working hard flipping the tire across the football practice field. 

This is our second year of summer weights. Ben will be a freshman in the fall and last summer the junior high boys went just 2 days a week.  This year it is Monday through Friday. They split up and half go into the weight room and the other half go out to the football practice field.

 Ben loves the weight room. He joins his group when they go outside but usually would just sit on the picnic benches at the nearby concession stand to watch. The grass is usually wet, the tractor tire that they flip is really big. I get how this is uncomfortable for a 14-year-old with Down syndrome and autism. Really a sensory nightmare.  But he pushed through, because he loves the weight room, the loud music, the time with peers. 

A day not long ago, as I walked toward the school, I noticed Ben’s group was outside. I looked to the concession stand to make sure Ben was in his usual spot. He was not. Sometimes he would run around the concession stand, when the others were doing something that was too much for him. I waited but he did not come around from the other side of the building. 

Mom instinct kicked in and I stared scanning the area for him. It did not take long to find him. In the middle of the group of boys. I was happy that he was with his peers instead of watching from the sideline. Two by two the boys would lift and flip the tire 3 times, then move to the back of the line. Ben was getting close to the front.  I watched to see what would happen. 

Ben was paired with a senior. One who did not need a second person to flip the tire. But as the two boys in front moved to the back of the line, Ben moved up and helped flip the tire. Ok, he didn’t help much. But he was there, and he touched the tire. Something I was not sure I would ever witness. It brought tears to my eyes. 



One year and eight days. That is how long it took from the first time Ben witnessed the tire flipping to feel comfortable enough to participate. 

Inclusion. We talk about it a lot. Ben does not always want to do what his peers are doing. Especially things that are challenging or sensory demanding. But once he becomes comfortable, he enjoys the activities as much as anyone. 

If asked if Ben wants to try something new, he will almost always say “NO!” Without really listening to what we are asking him to do. Our policy has always been that he has to try something. If he does not like it after 2 weeks he can quit. This generally applies to things we think he will like.  Like junior high track. The first 2 days of the season are always rough, then he loves it. 

Something similar happed with choir. When he moved to junior high and got a new vocal teacher, he would not sing with his peers. He would go, learn the songs, participate in some of the activities, but not actual singing. Then at the beginning of this last year he decided it was ok to sing along. It took a full year.

Imagine how many things our kids miss out on if it takes them a year to get comfortable. Things that they enjoy. Things that they need help accessing, but don’t know how to ask.   I know I am guilty of giving up after a much shorter time. 

Weights last summer were the same. He loves the weight room, so he puts up with the rest. Until he got comfortable with the rest. By the time he is a senior, I fully expect him to be doing it all. But that is 3 summers from now. We have lots of time to practice. 

I guess that is what inclusion in school is really all about. Time to practice, in a setting that is slightly more controlled. Time for peers to practice being around Ben too. 

If I had not had two older boys go through the summer weight program, I am not sure I would have even thought to take him. Sometimes we as parents, have to be creative when thinking of ways our kids can be included. 

Ben gets the benefit of a set schedule (something I struggle with) a good workout, time with peers. I get reason to not sleep in during the summer, time to walk, work on my computer, listen to a book. Any way you look at it, it’s a win. 
Except that 5:45 alarm part. 

Wednesday, June 29, 2022

 I often have people ask what things we use to help us get Ben to school on time and to help him to be as independent as possible.  Here is a must have item for our loved one with Down syndrome to help him navigate his day at school.  

First off the entire process of getting ready for school is a challenge.  We use quite a few items to help us along the way.  The first thing we use are lots of alarms.  The alarms tell Ben when it is time to do something, not me.  This helps to avoid a power struggle.  Sometimes on days when I can tell he is especially having a hard time focusing and getting ready for school, I will get out the count down timer.  The visual helps him know that time is ticking down.  The bad part is that he knows how to give himself more time.  

Secura 60-Minute Visual Countdown Timer, 7.5-Inch Oversize Classroom Visual Timer for Kids and Adults, Durable Mechanical Kitchen Timer Clock with Magnetic Backing (Red) https://a.co/4zY76Nt


The last thing before getting out the door is always shoes.  We have tried a couple of other no tie options, but this one is Ben's favorite.  It looks similar to real laces, if you don’t look to closely.

HOMAR No Tie Shoelaces for Kids and Adults Stretch Silicone Elastic No Tie Shoe Laces https://a.co/fLD79lb