Get notice of new posts
Connect with me!
Help Support Our Climb
Damn Fine Words Writing Course

Aaron’s Olympic Moment

Aaron watching Tommy play Nintendo

Aaron watching Tommy play video games

Is summer different for kids with and without disabilities?

As parents of children with disabilities, it is difficult to know “What is realistic?” “What goals do I want?”. I have always found it helpful to measure “normalization” by comparing the life of my son Tommy with his brother Aaron. Below are my thoughts about summer activities when the boys were young teens. The lessons I learned helped me cherish the final “inclusive” story below. Hope you’ll share your thoughts and success stories.

Tommy, my 13 year old son, with the label of “normal”:

Went to 2 weeks of Boy Scout camp, an experience which included a hike on the Appalachian Trail.

Had to choose between participating in baseball or soccer which included 2 practices a week and a game. In August he began daily training for the school cross-country team.

Was active in a neighborhood network of five boys who decided to start a Gaming Exchange Club. His friends called him the minute he arrived home from activities, played games until supper.

Was invited to stay overnight with a friend or cousin 3 times and his friends 5 times.

Had a season’s pass to a nearby amusement park and spent at least one day there each week with friends.

The days of summer flew by for Tommy. He had individual activities with friends, but also family activities which included a camping vacation and travel to a National Park. His major frustrations were either the lack of time for pursuing all of his interests, or his Mom’s suggesting he do something “dumb” like reading a book or practicing his clarinet.

Our family on a camping trip

Our Family Camping Trip

Aaron, age 14, with the label of autism, intellectual and developmental disability:

Aaron went to two weeks of “special” camp: Easter Seals and Stepping Stones.

Aaron’s major activity was watching Tommy play baseball, video games…and riding in the carpool to drop off Tommy and his friends.

Aaron also has a pass to the amusement park, but can only go with an adult (his mother).

Aaron spends every morning saying, “bus, bus … ready, set, go.” When the school bus doesn’t come, he sometimes licks on the front window, bites his hands and puts on his coat and backpack. He can’t figure out why his routine is different from the other 9 months of the year.

Aaron also can’t figure out why we spend all winter telling him to keep the front door shut, and all summer telling him to keep the front door open (but that’s another story). *smile*

He was not invited to overnights with cousins or friends.

What’s the Difference?

As I contrast the lives of my two boys, I can’t help thinking…

• …perhaps I wouldn’t feel Aaron’s isolation and lack of contact with any friends or same-age peers if Tommy had fewer friends.

• …perhaps I wouldn’t worry about Aaron’s behaviors, physical condition, weight and stamina if he were occasionally an active participant, rather than always an observer.

• …perhaps our family will adjust eventually to the sadness (and stress) we feel knowing Aaron’s only opportunities come from mom, dad or brother…and realizing it may always be that way.

* …perhaps we wouldn’t feel so trapped if we could get respite regularly.

* …perhaps we’ll become accustomed to wearing a key around our necks so that the door can be locked with a deadbolt every time someone goes out or comes in (otherwise Aaron will run into the street or enter neighbors’ homes).

* …perhaps we’ll resign ourselves to our community’s “special” camps and “special” recreation programs, which effectively exclude Aaron from almost everything that is typical, regular, easily available and low cost.

* …perhaps hope will sustain us that someday a “community support” agency professional from somewhere, anywhere, could adapt, modify and begin to open community activities for Aaron and others.

* …perhaps/…oh perhaps…some wonderful person will believe that a community is more that a group of houses, businesses and people.

Summary: “Separate is Inherently Unequal.”

The tragedy of having a child with a disability has nothing to do with a syndrome, impairment or disease. Words such as autism, CP, and intellectual disabilities are just descriptors the same way hair color, height, race, sex and personality are descriptors. Children don’t start out life knowing they are different. The tragedy is the reaction of families, neighbors and society, which emphasize differences.

The conflict for people with disabilities and for their families comes when the community limits opportunities, segregates and restricts individuals’ choices (e.g. Handicap swim is Tuesday; 1:30-2:30 p.m. and General swim is Monday to Friday 8:00–5:00). If Aaron had an inclusive swim buddy, Aaron wouldn’t have to go to “handicap swim” but rather the general swim with the other kids.

It doesn’t matter that the limiting of opportunities appears, to have a good rationale or charitable intentions. Segregation limits freedom, limits choices, and limits development.

“Special” means segregated.

Our Olympic Moment of Inclusion

One hot July day, Tommy and his friends stopped by our house to make some peanut butter and jelly sandwiches for an impromptu picnic.

Unexpectedly, one of the boys asked if Aaron wanted to come along.

Five minutes later, all the kids were laughing, talking and riding their bikes to the park. One red-haired kid named Aaron was riding on his bike in tandem with his brother.

In about one hour the picnic ended and they brought Aaron back.

That was the highlight of Aaron’s whole summer.

Our Olympic Moment–not, Special Olympic Moment

That moment for Aaron was sort of like the experience of an Olympic ice skater, gymnast, American Idol singer who practices day after day hoping to “bring it all together” for one magic performance or “big break.”

It was a “victory” –a spontaneous, normalized recreation experience, without his mom! Ahhh (smile-sigh).

And now…back to work. But, perhaps, just perhaps…those wonderful, typical neighborhood kids will grow up more fully with the vision for and the experience of community integration and freedom. They are the next generation of soccer coaches, swim instructors, church and scout learners.

The change of inclusion has begun.

Keep Climbing: Onward and Upward

All my best,

Mary

Related Stories:

On the last day of Junior High School.

Dream Plan for Aaron–14 yrs old (Part 2).

America the Beautiful: A Family Vacation, Plus.

Share YOUR Thoughts:

Are summers different for kids with and without disabilities where you live? Can you think of anything you could do to help? Any way to include a child in the activities of your children? Any tips to share? Any stories from the 90s? 2012?

Be Sociable, Share!

27 Responses to “Aaron’s Olympic Moment”

  • Hannah Lehn says:

    Reading this article just brought a huge smile to my face. What a kind young boy to invite Aaron like that. I think if more people had an act of kindness like that and didn’t look at the “labels” that describe what kind of person they are, inclusion would be a lot easier and productive. I brought my friend Kenny who has developmental disabilities to homecoming with me last year. I had teachers and parents coming up to me telling me how great that was of me to do. Yes, it was a kind act but I did not do it because I felt pity for Kenny. I did it because I wanted him there and my friends wanted him there. I didn’t understand why people were coming up and praising me for this…Aren’t you suppose to go to homecoming with your friends? Kenny’s disability does not make him any less of an awesome guy and it sure doesn’t make him any less of a friend to me. Inclusion is very possible if you look past the way someone is labeled and look at the person they truly are.

    • Mary says:

      Hi Hannah, “Inclusion is very possible if you look past the way someone is labeled and look at the person they truly are.”– that is indeed the bottom line. But, not many people can do that. I think you are inspiring too Hannah. You saw the beauty of another person–and were able to make a friend, that brings joy to each of us.

  • Kyle English says:

    That article was great! I never really looked back at the picture of how they must feel when they are labeled “special” and put into certain areas because they are “special”. That alone just segregates them from the rest of their classmates and friends. However, with this story from the eyes of Aaron is a great thing. It has opened up my eyes to the problems that society tends to make up itself. Hopefully this article helps others see and change their opinions too.

    • Mary says:

      Thanks Kyle,

      It is different from Aaron’s POV. Now, some other person will love it–mainly because they haven’t ever experienced inclusion, or being the object of charity is okay with them. It is all about POV.

      You will have a different “level of awareness” from now on. It will be hard to explain to others who hold on to the old paradigm. That is your challenge, and the hope for us old people :)

  • Britt says:

    This was a really well put together article. I enjoyed how you really put into perspective Aaron and Tommy and how different their lives really are. You showed the contrast between a child who is considered normal and one with a disability. It is sad that we have to label both boys separately and that they can not engage in the same activities. I think it is also people like Tommy’s friend who make the differences in society. By asking Aaron to come along took courage from him to speak up because Aaron is not the “norm” and is not usually with them. I think society really struggles with trying to include people and trying to fit in. Even if someone is with their best friends, if everyone likes one top except one girl, that one girl is rarely going to voice her opinion because she isn’t agreeing with everyone else. People struggle with this on a daily basis and not even with disabilities.

    • mary says:

      You’re right Britt, it often takes just one person making the invitation. And, having the courage to step outside everyone’s comfort zone. But oh, what a difference that can make.

  • Katie Koerner says:

    I really enjoyed reading this article! After reading it, I did realize that our society puts labels on individuals with exceptionalities even if it is something very little. I do believe our society as a whole should make an effort to make sure those that are handicapped and have a disability don’t feel left out because they might not understand why they can’t do the same summer activities as maybe those of their siblings. I feel that in my heart one day this will happen, even if it does take a little while longer, I still believe it will happen.

    When Aaron was asked to go on the bike ride with Tommy and his friends, it was definitely a memory he will never forget. He was able to do the same activity as his brother which he may not understood why he could never in the first place. Combining both activities those ones tommy may have participated in and the ones Aaron participated in , both would be able to enjoy themselves better and have a memory they both with cherish forever.

    • Mary E. Ulrich says:

      That was certainly a moment mom will never forget:) It bring me joy even to think about it. Katie, we can hope you and your generation will have many of these moments. We have been blessed with some great people who have made Aaron’s life better. Thanks, you’re right combining the activities would give more opportunities to everyone.

  • Danielle Moore says:

    I like how this article shows how society separates kids. It puts it into reality that you can’t see if you just like at it from one side. I think all kids should be able to do the same activities. I really like how you said that having these labels is just like putting kids in categories for hair color or eye color. That is so true! People would be highly upset if we did that but they think this is okay.

    • mary says:

      I hope the young people today have more opportunities. I know our community center has some open doors for inclusion. I smile every time I see someone at the pool or in the gym.

  • Grace Gordon says:

    I do not think there should be a difference in activities between children with or without disabilities. I am a strong believer in the big brother big sister program. Children want nothing more than to have fun with their friends and to enjoy every summer. I think it would be a fun idea for children to participate in a camp where students are paired up with a friend who can show them how to play all the games they play. When they have that older friend to guide them and then they can feel included. All children should be included in everything and have equal opportunities. When I was a camp counselor I loved seeing how happy they were when they got to play with everyone.
    Grace Gordon recently posted..Aaron’s Olympic Moment

    • mary says:

      My husband was a Big Brother when we were first married. It’s a great program. Aaron has had some great camp experiences and it all depends on people like yourself Grace, you have an attitude to include him.

  • Anne Pace says:

    This comparison of summer activities between your two sons really proves that society may think there is equality between people with disabilities and people without disabilities, but in actuality society has a long way to go in that respect. One very important quote from this blog post is as follows: “The conflict for people with disabilities and for their families comes when the community limits opportunities, segregates and restricts individuals’ choices”. This quote is extremely important in realizing that even though there are opportunities for people with disabilities, these opportunities are not always equal. For example, they may be more expensive, shorter lasting, or just many less options. This makes it difficult for parents and families of people with disabilities trying to find fun summer options for their children.

    • Mary says:

      Hi Anne,
      We can hope the lessons of the past have helped the people who do the planning to just include our folks, with supports, instead of building segregated “baseball facilities” and “parks” and other expensive places that only segregate our children.
      Thanks for your kind words.

  • Megan Adair says:

    This post really had me thinking back to my summers as a child. I feel that I could relate to Tommy in the sense that I was always on the move. I can only imagine how hard it was on Aaron to see his brother doing all of those things without him. Even though my sister is older than me, I always felt left out when she wouldn’t invite me places. And when she finally would, I would be so excited, just like Aaron.
    The one boy that invited Aaron has most definitely set the stage for other children to invite Aaron along. He made that first step of inclusion that, hopefully, the other children will do as well. Seeing how happy and excited Aaron must have been hopefully had them thinking about that during future activities. Taking the first step is always the hardest, but definitely the most important.

    • Mary says:

      Aaron really was excited. It was a special memory. Another time Aaron got invited to a music camp celebration with a neighbor. And that too was an amazing feeling that someone else saw the beauty in Aaron. Both of those young people are now adults. I often wonder what happened to them and did we make an impact. I like to think we did.

      Thanks Megan for your kind words.

  • Meredith Meyer says:

    I wouldn’t personally know if the summers for those with disabilities is different where I live, but I would imagine it is because I live in a regular neighborhood just like the one in the story. Throughout my childhood,, I haven’t had many encounters with people with exceptionalities which makes me believe that the summers (and any season really) are different for kids with and without disabilities. This story once again inspires me though, in that the simplest of job titles can change the activities and even lives of a person with exceptionalities. A lifeguard can allow or assist a person with exceptionalities into a pool durng “general swim time.” A camp counselor or coaches can include individuals with exceptionalities in any kind of sport or activity; this may take some extra assistance, but the happiness the child with exceptionalities would receive from that experience would be tremendously rewarding. I believe inclusion will take extra assistance, awareness, and most importantly, good-hearted people that just want to see a happy child.

    • Mary says:

      Your messages always give me so much hope Meredith. I am confident YOU will do your best to include a child who is on the fringe–whoever they are. It’s just an “inclusive” mindset–you see things you never saw before.

  • Katherine Schmittou says:

    It’s hard for me to think about all of the things kids with disabilities aren’t able to do. Just reading your example comparing the lives of your two sons shows the reality that people with disabilities have to go about their lives differently than people without disabilities.

    When you mentioned that Aaron had to go in the carpool for your other son’s activities, it reminded me of my friend’s brother who also has autism and was always along for the ride to and from soccer practice. Over the course of the car rides, I learned a lot about my friend’s brother, Kevin. He may not be able to play sports, but he can remember all of the words to any song even after only hearing it once; he can tell you any fact you could possibly want to know about the Reds baseball team. Kevin might not be able to function like his sister and me, but he can do some amazing things I know I’d never be able to do!

    • Mary E. Ulrich says:

      Hi Katherine,
      That’s neat that you got to share in Kevin’s life. Without those car rides, you might not have gotten to know all Kevin’s strengths and the inside of his family. It would be interesting to talk with your friend now and her parents. I hope Kevin is doing well. I’m sure it made a difference that you were so accepting of their family –all of them.

  • mary says:

    I wish I could capture Aaron’s face. But, it’s probably 30 years later and this is still one of the happiest days ever. It made me know that “inclusion” can work.
    Thanks for the memory Sadie. :)

  • The story about Tommy’s friend warms my heart. I remember when I was a little kid and always looked up to my brother and his friends. I always wanted play with them and the “cool” things they were doing. He barely ever let me play with him and I would always get upset. However, sometimes he did let me play with them and it was so much fun. I can relate to Aaron in this situation. Being able to finally do something that you have never done or only done a few times is something that is hard to forget. It would have been amazing to see the excitement on Aaron’s face that day.
    Sadie Sneider recently posted..Going to the family reunion, or not?

  • mary says:

    Hi Hannah,
    You are right, we like to do things in our comfort zones. The trick then, is to have the kids grow up together, go to school and recreation together, so inclusion is the comfort zone. :)

  • I think a problem many kids struggle with is including new people, not just kids with a disability. Even though, like you said, it made Aaron’s entire summer just because they decided to include him. I think this shows that as a society today, we like to stick with things that are normal. Our normal group of friends, the same type of food, like people we say we are creatures of habit. And we as a society would benefit if we did try to break that and do things that push us out of our comfort zone more often.
    Hannah Holdren recently posted..When Schools Say “NO” to Inclusion

  • As I read this, I wondered if my kids would be the ones to invite Aaron along. One would, the other would think about it but likely through shyness probably wouldn’t. It is through lens’ like this that I gauge how my kids are doing. Will they seek to include people especially those who don’t have the advantages that they have?

    They go to a school K-8 where there are almost no kids with handicaps but they do have a buddy system where older kids are paired with younger ones to do activities. I have seen a huge benefit to this and surprised my kids one day when went to collect them at the park to find they had made up an impromptu baseball type game with a much younger child.

    They had adapted the rules to make it work for her but most importantly, it was all about her. They had put her front and center, catering to her needs (to be the batter,) everyone else was in support – pitcher, fielder – and they yelled encouragement as she ran round the bases. For me it was the highlight of the summer. I hope if they ever have a friend with a brother like Aaron, they would do the same for him.
    Alison Golden recently posted..Cancer Diagnosis After Giving Birth: A Warrior Woman’s Inspiring Story

    • Mary E. Ulrich says:

      Alison, your example of the baseball game is PERFECT. When the person is important, we find a way to include them in our lives. Never worry, you are doing an amazing job of raising sensitive and caring boys. Kudos to you:)

Leave a Reply

CommentLuv badge