Summer Activities| A Mother’s Hope for Her Sons with and without Disabilities
NOTE: This is when Tommy was 13 and Aaron 14 years old.
Is summer different for kids with and without disabilities?
This summer Tommy, my 13 year old son, …
• 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. In August, however, he began training for the school cross-country team.
• Was active in a neighborhood network of five boys who decided to start a Nintendo 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.
• Had a season’s pass to a nearby amusement park, and because he can use public transportation independently, 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.
Tommy’s brother, Aaron, age 14.
Aaron went to two weeks of special camp this summer.
Aaron’s major summer/weekend/vacation activity is watching Tommy play baseball, play Nintendo games…and riding to drop Tommy and his friends off.
Aaron also has a pass to the amusement park, but can only go with an adult (who so far is 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.
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*
Aaron was on the waiting list for a short Easter Seals sponsored program in August, the only other community recreation opportunity available to him in our county.
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 the hours and hours of inaction would not occur if Aaron had better skills or could entertain himself.
• …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 would 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 our prayer will be answered that some child around Aaron’s age will care enough to help him join a circle of friends. Just once, even once.
* …perhaps/…oh perhaps…some wonderful person will believe that a community is more that a group of houses, businesses and people. Agency professionals must become bridge builders in the community. Families in which a child has a disability need the same support regular families have.
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).
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 last summer, Tommy and his friends stopped by our house to make some peanut butter and jelly sandwiches for a 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 a bike in tandem.
In about one-half hour the picnic ended and they brought Aaron back; that was the highlight of Aaron’s whole summer.
That moment for Aaron was sort of like the experience of a serious ice skater. Olympic gymnast, actor, or musician 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 experi3nce of community integration and freedom. They are the next generation of soccer coaches, swim instructors, church/synagogue group and scout learners.
The change of inclusion has begun.
Related Stories: (Click on title)
On the last day of Junior High School.
Dream Plan for Aaron–14 yrs old (Part 2).
America the Beautiful: A Family Vacation Plus
Keep Climbing: Onward and Upward
“When we stop to lift one another up on the climb, we all reach a higher place.”
All my best,
Mary
Comment:
What were your summer vacations like? Would they have been different if you had a label of autism or disability? If you were a parent of a child with a disability what would you be thinking? dreaming? Are summers different for kids with and without disabilities? Can you think of anything you could do to help?
I really liked this article. And I think it is very important for Aaron to feel like he is important and included. It was very nice for the kid to ask him to come along. It also seems like he has a great support system at home, with everything you do for him. I’m sure it was difficult to see the struggles Aaron was facing because the change in routine, or not being given the same opportunities. I’m glad he got to have an “Olympic moment” to high light his summer!
My greatest wish is for each mother to have such a thrill. Thanks Katie.
This story definitely put a big smile on face. I can’t imagine how hard it must have been for you to watch Aaron not being able to do the things that Tommy could. Towards the end, I thought it was really awesome how Tommy and his friends really included Aaron when they were riding bikes. Must of been a huge relief for you. Just think, if everyone was as sweet as those boys, the world we be a much better place for people with disabilities. You have given Aaron and Tommy such a wonderful life full of opportunities.
Thanks Abbey, the bike ride was one of the highlights of our lives.
But, I’m a mom, so it is never enough. Just ask your mom. 🙂
This story is truly inspiring. I can only imagine how hard it was to watch Aaron not doing as much as your son Tommy did. It is amazing how welcoming your sons friends were to Aaron and how they asked him to hang out with them one day. It shows that even though someone may have a disability, they can still participate in everyday activities and be like a “normal” kid. Aaron and your family are inspiring to all and your love for each other only makes you stronger and more inspiring.
Thanks Lisa, I’ll bet you did an act of friendship or kindness for someone and you don’t even know the big impact it made. Tommy’s friends probably will never know how they touched my heart and gave me hope and a vision of the future.
Its so interesting to read about your two different sons. And how different they are but that you make sure they get the same opportunities and are treating like equals. Its really neat to see what they are doing side by side and really see the similarities and differences about what they like and what they do with their time.
Thanks Emily. We tried to give both Tommy and Aaron the best we could. We did a lot together as a family and I’m so proud of both of them.
When reading this post I became very interested when you began to described the typical life of your son Aaron. I have a few members in my family (cousins) who live with disabilities, and reading this allowed me to see similarities of thier lives with Aaron’s. I believe its ridiculous that there are not more activities for children with disabilities. It seems as though the world views these children as incapable of doing anything, and children with disabilites are not given the opportunity to live normal lives. This can even be seen in the terms we give these children, when we call them “special needs,” and in the way their education is called “special education.” It seems to me that Americans today see these type of students as different, and it was clear from your blog that Aaron was separated from the rest of the children in his culture.
Hi Andrew, thanks for your comments. You are right, the “special” label gets us segregated and limits our opportunities. That is why I work so hard for “inclusion” then the whole world is open, we just need extra supports.
Good luck to your family members. I hope you will stop back or sign up in the top left box for “notices of new posts” Best. Mary
This piece has touched me in a way that I can’t even begin to explain. The world does not discriminate against disability, and, therefore, everyone should get to experience its glory and magnificence. Although I understand the restrictions place upon civil businesses (like the buses and amusement park) for handling people with special needs, I do not feel as though business regulations shouldn’t limit the life experiences of people born with disabilities. Aaron’s highlight of his summer was being treated like a “normal” kid, but just because Aaron doesn’t function in the way Tommy does, doesn’t mean that he doesn’t want, or deserve to, experience all the things “normal” kids get to on a daily basis.
*I do not feel as though business regulations should limit the life experiences of people born with disabilities.
It’s always a tricky balance between the rights of two people or groups. But Alex, I agree with you, there are many experiences that are unnecessarily limited because of small minded people who think, “rules is rules” even if the “rules” make no sense.
Hi Alex, Thanks for “getting it”–once you cross the paradigms of segregation and the charity model you see things differently. Just being treated like a “normal” kid is exactly what we were trying to do. Actually, still are.
Hi Alex, I’m a little confused. Are you saying the world does NOT discriminate, or it does? I agree businesses often don’t even know they are excluding people with disabilities, it’s all part of their levels of awareness.
Aaron has been lucky. We’ve had some amazing moments where he got to participate like a “normal” kid. You might like the article about the track team. Thanks for stopping by.
Hello, although I have no children with a physical disability I can relate to you. I worked with several companies where the children with disabilities are separated and are not even offered to get to do the things that the other children do. I agree that it is not fair or right that a child has to be subjected to segregation because they are limited. I do believe that the people in these camps are just are not creative enough and can not find ways to make the same activities available for all children.
Thanks Luecreasia, I agree that sometimes it all boils down to creativity, effort and attitude. That is why I believe in differentiated instruction and curriculum so strongly. The kids can be included. They just need to be given the help to succeed. Appreciate your comment.
That was a very touching “Olympic Moment of Inclusion!” It is great to see that some children understand that people with disabilities are not so different from them. You are right; children do not start out life knowing they are different. To young children, other children are just potential playmates. All that they want to do is play. They do not care with whom for the most part. Unfortunately, society and families introduce them to that ‘difference’ that they were unaware of.
Keep Climbing,
Austin Bonifas
Thanks for joining in the discussion Austin. You’re right, for some kids it is just natural and that makes it hopeful for all of us.
I found this piece to be incredibly powerful. I am a part of a class on students with exceptionalities at Miami University and I find this piece almost heartbreaking. We have talked a lot about how we can make classrooms more inclusive environments for students like Aaron, but we have not talked about the social aspect of it. It must be so hard to have two such different but such brilliant children. It sounds like Aaron is lucky enough to have such a warm and welcoming family who will always love and care for him. Maybe Tommy can start introducing Aaron to some of his friends and take his brother under his wing.
Hi Emily,
Glad you were able to see the beauty of both Aaron and Tommy and the way their lives are alike and different. I think you will enjoy the articles about their cross country and junior high experiences.
Tommy included Aaron in lots of his experiences, and each inclusive experience made our hearts sing. The schools can do a lot to foster these positive experiences. Let me know what you think of the other articles.
I don’t think any of the people doing karaoke faded into the background 🙂 but they were having fun and all given the same opportunities, respect and support from the crowd. O&S said nothing and the others did simply fade into the crowd, I doubt other people noticed. That would be good, right?
Just a “normal” day in the neighborhood! Yep, perfect.
Today we went to an amusement park (it’s Spring Break.)
I was pleasantly surprised to see a number of disabled people out and about. I saw a young woman with Down Syndrome absolutely love a spinning ride sitting next to another young woman – her sister? I saw a a handicapped boy of about seven sing karaoke with a young girl, again perhaps his sister? My Oliver sang next and then an autistic boy sang karaoke with a women who was blind. I saw a couple other handicapped people through the day enjoying the park always with able bodied people. I don’t know the circumstances but they *weren’t* going about in a group. I got the impression they were individuals out with their families.
Seeing the young woman on the spinning ride alongside my boys and everyone singing karaoke seemed a very inclusive experience to me, one I hadn’t seen before in the US.
Hey Alison, thanks for all your positive examples. It would meet the definition of inclusion if no more than 10% of the group were people with disabilities. And it sounds like it did. Each of the people had the support they needed to enjoy the activities in the park that they chose.
There was not forced Karioke, or groups of people with disabilities walking down the path holding hands…
We need all the positive images we can get. Thanks for sharing.
ps. I’m wondering if the people faded into the background and everything just seemed “normal”? Perhaps you were more aware because you are more knowledgable and such a sensitive person. Did Oliver and Sebastian say anything? or was it no big deal?
This piece is powerful and brings a few things to mind but ill leave one comment/suggestion to stay brief. I understand that dealing with different children in the same age bracket is difficult if they aren’t the same but if they both are happy thats all that should matter. In the piece it never was said that Aaron was unable with his summer and that is the most important aspect of dealing with people as individuals.
Excellent point Alex. It is about being individual.
Unfortunately, Aaron would try to run out into the street everytime Tommy left the house so we had to put key locks on the door to keep him inside. He ate the leather on the carseat because we would drop Tommy off and he couldn’t go with him. Aaron started biting his hand. He didn’t sleep nights because he wasn’t tired. He started to mastubate in public… in other words Aaron had a terrible summer…and his family had a horrible terrible no good very bad summer too.
The next year I began a parent group to get extended school year. I’ll talk more about that in another article, but we eventually got it and at least for the 6 weeks in the middle of the summer Aaron had something to do every morning.
As a parent, I can still feel the panic everytime there is a long vacation from school. I can’t tell you how much difference that makes. Aaron still gets all excited every time he sees a school bus. The wheels on the bus go round and ….
This is such a wonderful piece that really gets me thinking. I work with children mostly under 5 years old. I’m a special education therapist. Parents start thinking and planning their child’s summer in January to make sure there is a spot in camp for them. I know family time is VERY important and for these children who have 12 month school calenders. I really like how you saw the light when Aaron joined the “group.” Children and children at heart;) thrive in natural situations. While I think camp is ok, I recommend some pure no planned leisure time for beautiful natural happy moments too!
HI Shane, Welcome to Climbing Every Mountain.
Therapists have such an important job. Aaron’s PT wrote an evaluation letter to help us get the tandem with our family resource money. Aaron has tremendous balance issues. The therapist came to our house and analyzed how Aaron could ride both a stationary bike and the tandem. Then she worked with us (the parents) so we could figure out how Aaron could mount the bike and we got special adapted pedals which helped his foot stay on the pedal (like stur-ups) so his feet wouldn’t get caught in the spokes of the bike. Plus, the stur-ups helped Aaron be able to actually pump some of the time. We also had to teach Aaron how to keep on his bike helmet. Aaron’s Dad taught Tommy how to ride the bike with Aaron. We practiced riding the bike every night.
And then, when the magic moment of opportunity came…Aaron and Tommy were ready.
Even if the whole experience only lasted a half hour–It was the only half hour of the past 14 years of Aaron’s life when I felt he was part of the group. It was truly a special time.
Now that Aaron is 36, that natural experience only happened about a dozen times. But those few times were the moments I cherish in my heart.