Down Syndrome and Special Needs
I really thought about how we were going to celebrate this as a family. I just wanted to celebrate Trenton so I started thinking about what makes him different. That’s actually rather difficult to come up with. He likes ketchup with bread, like his dad did as a boy. He torments the crap out of his sisters, like every other big brother I know. He likes to climb the rock pile and slide down the pile like a slide. He loves to swim. He does not like to do homework. He likes girls. Hmmmm…. HOW is that different from other 11 year old boys?
Well, he doesn’t ever tell people when he doesn’t like them. There are people he doesn’t respond to as well as others, but he is never rude to them. He never talks about them behind their backs, even under his breath. He just doesn’t say anything at all. I can’t say I do that 100% of the time if I’m going to be really, really honest. I need to be more like him in that area.
There is one more thing…. He likes to do things at his own pace. He likes to stop and smell the roses. A LOT! I tell him to hurry all the time. I mean ALL the time. So, I thought I would indulge him and we could go on a family “nature hike” and all stop and smell the roses, or whatever else needed a closer look as often as he wanted.
It started out just great. It was a beautiful morning. Then, little sis decided she wanted to walk the other direction and was not feeling the “smell the roses” attitude.
That might look like laughing, but it’s screaming. The thing about being the youngest and the loudest generally means that you get whatever you want. World Down Syndrome Day, St. Patty’s Day, your birthday, or even National Eat Ice Cream For Breakfast Day become irrelevant when you are on a family walk and one child decides to start screaming. The child who screams bloody murder to go home gets to go home. So we turned around.
On World Down Syndrome Day, to celebrate, we went on a walk that was just as hurried and rushed as every other day of our lives. Then I thought about it. We celebrate Down Syndrome Day every day just by going about our business as a family. It’s a part of who he is a person, and it’s a part of what completes this family. I can’t imagine it any other way. He fills my heart with love all the time. He is loving, compassionate and fun, EVERY DAY, not just today.
Today, stop, smell the roses, enjoy your surroundings and celebrate by showing someone unconditional love and compassion. Celebrate World Down Syndrome Day every day.
Long Jump! I love this picture! It looks like he is flying.
He has the 2 CUTEST fans, ever. What a lucky boy!
He enjoys being the center of attention, just a little, teeny, tiny bit.
We discovered later he was mad in this picture because she had all the medals and he had only gotten ribbons up until his last race. Last year he was all about the experience, this year, he started to understand it’s a RACE! It’s amazing how much progress can be made in 1 year. Last year he was terrified of the starting gun. He still didn’t start exactly on time this year, but it was because he was too busy making new friends. I like to see him win, but I also think coming home having made new friends is kind of a win in and of itself.
I’m pretty sure I am NOT this happy (or cute) when I run, and I like to run. Have you ever seen those pictures of “How I think I look when I….” and “How I actually look when I…..” I hope I look like this when I run, but I’m pretty sure I look like I’m taking my dying breath.
There are times in raising all children, with and without disabilities that bring you to tears; tears of joy, tears of sadness, and sometimes you have no idea why you have tears. Having 2 typically developing girls, I can tell you these random tears happen more often with a child who has a disability. It’s different for every parent, I am sure, but from talking to friends and personal experience, I know there is a grieving process that you go through with your initial diagnosis. It’s a different type of grieving than with the loss of a child, but your hopes and dreams for your future and your child’s future suddenly need to be reevaluated.
This grieving isn’t a once and done process. It happens slowly and gradually over the course of your lifetime. I don’t experience this very often, and I think it’s because I feel like I only know Trenton with Down Syndrome and if he didn’t have it, he wouldn’t be Trenton. More often, my “grieving” comes with poor behavior, and often in public, or when he is left out of an activity due to his disability. I’m sad for him when he is left out, and I’m embarrassed with the poor behavior in public. I have literally considered sitting down on the floor of the grocery store sobbing because I thought MAYBE he would feel sorry for me and stop running away from me. Then, I’m saddened because I feel like people are looking at me with judgment that I can’t handle my own child and then with pity, and that just pisses me off. He IS an amazingly cool kid, who just happens to be a really fast runner because he just so happens to PRACTICE running every place we go. I don’t need pity for that; someone to stand in front of him and turn him around, maybe, but not pity.
Probably the worst part is when he is left out of activities because of his disability. I can’t imagine how parents dealt with this before inclusion was commonplace. It’s true, he has a harder time understanding game rules, a harder time maintaining his attention to the task at hand, and is sometimes significantly noncompliant. When he is left out because he is noncompliant, it hurts. I just want him to understand that he WAS being included, that people wanted to HELP him, and he is not cooperating…. WHY would you not cooperate, Trenton?!?
This past year, we became involved in Special Olympics. We live in a very rural area so our opportunities are pretty limited for him to participate with same age peers. We have been doing swimming and track and field with a little girl with Down syndrome who is about 6 months younger than he. They do very well playing together. He plays basketball with his classmates in a rural community league. The surrounding communities have been excellent with including him and allowing him to participate with his classmates. However, we don’t seem to have very many opportunities for football.
This last Saturday, we attended a football clinic at the University of Kansas. It was “Hannah and Jayhawk Friends,” a clinic put together by their head football coach, Charlie Weiss. This was the 2nd year this clinic was in Kansas. I’m not really sure what I was expecting when I went down, but this far exceeded my expectations. The players and coaches were amazing. I think I expected the players to be slightly aloof, like this was a requirement from their coach that they had to fulfill to play football. I was so wrong. In watching them interact with the Special Olympics athletes, I saw so much heart and genuine joy in helping others.
Trenton continued his behavior of running, I think mostly because he wasn’t sure what to expect, and because Coach Weiss had a pretty amazing golf cart that he wanted to ride around in. However, instead of staring at me with pity or judgment, they jumped right in to help. Darian Miller, #6, even took a turn running after him for me, never showing a hint of frustration that Trenton was not being cooperative. Taylor Cox, #36 cheered him on enthusiastically, always with a smile on his face. Ed Fink and Preston Randall also helped encourage Trenton to participate.
I spoke to Coach Weiss about this, and told him how fantastic it was, as far as the training the players must have had on how to work with the participants and how they seemed to really enjoy putting on the clinic. He said the players got a lot of good out of running the clinic as well.
At one point I just stood back and watched Trenton with Darian and began to tear up. I don’t know how the two of them felt about it, but to me, it looked like they were creating a real friendship. My heart just filled with pride that I am so blessed to be Trenton’s Mom, and with gratitude that Coach Weiss started this program. Programs like this have contributed so much more than just 2 hours of football skills practice. The interaction between the players and the participants teaches both sides life- long skills of acceptance and caring.
The more acceptance of people who are differently abled, the less parents are going to have this grieving process I talked about earlier. It takes time for this to happen. It’s been an inter-generational process to get this far in our inclusion in schools, and it will be years and years before all people are accepted for who they are, no matter what their abilities. Programs and events like this will keep the inclusion trend on a more positive note.
A huge Thank you goes out to Coach Weiss and all of the other coaches, players and helpers last Saturday at KU. You guys are all amazing and I am so grateful that you took the time out of your busy schedules to provide this opportunity to my son.
In October of 2003, we were blessed with this crazy kiddo. We were not expecting for him to have Down Syndrome. In fact, the tests that screen for DS all came back negative. We would never have entertained the idea of terminating a pregnancy, for any reason. We did, however, do the testing (except amnio- that sounded painful and not worth the risk) and it all came back negative for any disability. Living in a rural area has its benefits, however, delivering a baby with potential health risks is rather scary. We just figured if there were health problems that we would deliver at a hospital that had NICU facilities.
Anyway- none of that matters now. He has been the light of our lives for over 10 years now. He is beautiful and wonderful in every way. Not that its always easy. It most definitely is NOT easy every day. Other people’s perceptions have been difficult at times. (We have heard the term Mongolian Idiot used in reference to him. ouch.) Behavior has been challenging at times. Still is challenging, however, it is getting better. More than once at a store I have considered falling down and crying because maybe he would feel bad for me and start behaving. (I KNOW that’s manipulative but sometimes people become desperate.) He can’t stand to see people sad. That’s part of what makes him so beautiful. Often, he will get down on one knee and propose to me, placing a pretend ring on my finger and professing his unending love for me after one of these behavioral issues. Then he smacks my butt like “Good game, Mom. Good game.” I can never be mad at him very long.
He’s also been known to break out in dance at random times. When this behavior is socially appropriate (or even acceptable) I think that more people should just break out in dance. How happy would we all be if we lived life like we were in a musical? I remember watching “The King and I” as a kid and even when she is angry at the king, singing a song and dancing seemed to remedy the problems they had.
He has taught me so much about patience, love and acceptance. I admire him for the young man he is becoming and look forward to watching him become even more of an inspiration for more people. I know a diagnosis like DS can be scary for some people, but it’s no reason to be afraid for your child’s future. He has a bright future. As a family, WE have a bright future because he is in it, no matter how many chromosomes he may have.