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)

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

Monday, January 6, 2020

Basketball Season, Inclusion and More

This is a photo of Ben bringing the ball down the court yesterday during his 6th grade basketball game.  Shortly after this photo was taken, he called out the name of his team mate, passed him the ball and he scored.  An official assist!  Not that they keep track of that sort of statistic at this level.    It was a good day for him.  We got there in plenty of time, he sat with and warmed up with the team, and listened to his coaches.  He was so excited to play and did a great job of following directions

But it has been a lot of work getting here.  Sometimes when we get to practice, he is ready to go and he cooperates and listens so he can learn with his teammates.  Other times hes is not.  This last practice we were late getting to the gym, and just missed out on the team running laps - something he adamantly refuses to do anyway.  But somehow that messed up his entire practice.  His amazing Coach kept trying to encourage him to engage, but for some reason he refused and just dribbled on the sideline or shot toward the wall.  Finally about half way through he jumped in and did pretty good from there on out.  But it is not always easy.  It made me wonder what it is like for him at school when he arrives in a classroom after the rest of his classmates.  Does he have trouble engaging?  I know they purposely have him go in late for band.  Is this helping or causing more problems? 

Sometimes seeing him in other settings gives me light bulb ideas on why things are occurring at school.  A similar thing happened this summer at Harrison Phillips #playmakers football camp. (which by the way was beyond amazing)  Ben would not engage with the other kids but would only sit and watch, and only when they left would he get up and try the activity  himself.  Was doing it with the other kids around too stressful?  I don't think so.  I have seen him play basketball in front of an entire crowd of people.  He loves being cheered on.   Or, more likely, is that what was happens to him at school?  Does he only get to try things only after all the other kids are done?  I don't know for sure, but I put my money on the latter. 

Basketball is his happy place.  The gym is not doubt, thanks to fantastic and patient coaches, the most inclusive place in his life.  We are so grateful to everyone who has helped him get to where he is today.  I asked him the other day who his favorite basketball player was -thinking he would say his older brother.  Without a beat he said Coach Dan.  You know what Ben?  He is one of my favorites too!

Monday, July 22, 2019

Put me in Coach!

It may be the end of the baseball season, but this little guy had a day to remember. What to you do at the end of a close game? You sneak into the team bag and put on the catcher’s gear. He was so excited to be a “real” catcher.

Thursday, April 11, 2019

The Lucky Few Buddy Walk, DSAA Kearney

We were so fortunate to be able to attend the Lucky Few Buddy Walk, hosted by DSAA NE Kearney.
The event was held at the old Kearney High School which is now First Baptist Church.  It was a wonderful place for the event and the gym was spacious enough to hold everyone comfortably. 
We enjoyed the music, photo booth, cotton candy, and yummy food.  Ben enjoyed the gluten free pizza that we picked up from Flippin Sweet on the way there.  It was fun to go to an event and be able to enjoy the party!  Thank you Suzanne, Kiffany, Beth and Lindsay. 

Lincoln Star City Buddy Walk!

Thank you to Down Syndrome Advocates in Action for supporting all families who have a loved one with Down syndrome in Nebraska.  Thank you also to all the wonderful volunteers for helping make the event such a success.  This is the first year I got to actually walk at the walk and was thankful to have volunteer photographers to help us capture the day.  Each year the Buddy Walk has doubled in size and we are grateful for everyone who comes out to support the local Down syndrome community so that we can make sure there are no families left behind.  
Thank you also to Shauna and Deb for helping to make this event possible!  Every individual with Down syndrome deserves to be celebrated and everyone is welcome at DSAA NE! 

Thank you to all our friends and family who helped Ben's Brigade earn 3rd place in fundraising! Thank you also to everyone who purchased necklaces, earring, or EM Sports photos.  Ben was so proud of the medal he received.