Monday, August 5, 2013

Dear President Obama: My child with special needs has so much more than "grit"



Dear President and Mrs. Obama,

I was excited to hear that you're going to be honorary chairs of the 2015 Special Olympics World Games, scheduled to take place in Los Angeles starting July 25 2015. This is B-I-G. The games, the Special Olympics announced, will include about 7000 athletes with disabilities from 170 countries around the world, and an anticipated 500,000 spectators. You'll bring extra attention to what's going to be the largest sports-and-humanitarian event anywhere in the world that year.

You expressed admirable enthusiasm in your video statement: "The athletes coming to these games represent the grit and determination that is at the very root of the American spirit. They keep working when the challenges seem greatest...they see opportunity where some see limitation. They represent the very best of the human spirit."

Now, this is a very true sentiment as I know from raising my son, Max, who has cerebral palsy. I have never seen so much determination packed into one little body. I can picture Max as a two-year-old commando crawling along the floor of our home, like an army soldier, getting around as best he could when his arms weren't yet strong enough to hold him up. I can picture Max today going up stairs, carefully holding the rail, every move measured. Of the many kids with disabilities I have come to know over the years, a can-do spirit is one commonality they share.

But with all respect here's the thing you—and many others—need to realize: 

Our kids have so much more than determination. Focusing only on their grit undervalues their abilities.

Athletes who compete in the 32 Special Olympics summer sports have real prowess. Like Abdel-Raman Hassan Al-Hemdan, a swimmer with intellectual disability from Saudi Arabia who is also partially paralyzed. At 10 years old, he scored gold medals in the 25- and 50-meter races at the World Summer Games in Shanghai. 


Obviously, this was quite the feat; his father has said that it took him a year of training to cover a distance of one meter. That's exactly what athletes do: They train. And then, the best of them win medals, as in any athletic competition. This is because they are both competent and able. This is something us parents of kids with special needs ache for others to see. As Abdel's father described his wins,  they're "a message to show the world the real abilities of this intellectually disabled child."

Parents of children with special needs are fully aware that our kids have real abilities. Not just ones that stand out in spite of their disabilities, but in their own right. Some may have athletic talents. Some may have creative ones. It depends on the kid, as it does with any kid. My Max has yet to compete in Special Olympics activities but he sure can run. That's not to say that in a race he'd beat other kids who do not have CP, but still, it's not just determination that's helping him sprint to first base when he's played on a Little League Challenger team.

This is something people tend to forget about kids and adults with special needs. They focus on how amazing it is that they're doing anything, period, let alone doing anything well. Would you ever release a statement solely about LeBron James' grit? Or gushing only about Lindsey Vonn's spirit? Would you use this as the lone description for any athlete this way competing in a national athletic event? I suspect not.

Our kids have to leap over many obstacles to get ahead in this world, and people do them a disservice when they focus only on their drive. So here's my simple request: When you chair the Special Olympics, give the athletes props for their spirit and skills. Encourage the world see all the abilities in their disabilities. Cheer them on as you would any athletes.

Your fan,

Ellen (aka Max's mom)

Image of Al-Hemdan: Special Olympics

22 comments:

  1. Grit, determination, drive, there are so many words that could be used to describe a special needs child.

    Samantha's Dad

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  2. In our attempts to "educate" people, I think we can go overboard. When someone, be he the President or an acquaintance at church or a stranger in a store, reaches out and says something supportive and positive about our kids with special needs, we should be gracious and appreciative. If we meet that positive remark with criticism, with nitpicking about every little nuance of language, with consternation that the statement did not hit every point we wanted it to hit, the result may well be that the person who offered words of encouragement will just keep quiet next time, for fear that his or her words will not be just perfect or might be misconstrued or might be offensive in some unforeseen way. In other words, being so critical may well result in people just ignoring our kids.

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    1. I so Agree! Take a compliment for what it i, and graciously say Thank you!

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    2. Anonymous squared, I do appreciate the support but at the same time, I have higher hopes for the way people see our kids—and talk about them. I wasn't slamming him here, just expressing my hopes. You know, like bloggers do.

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    3. Of course you have high hopes for our kids - we all do. What you need to understand is the Theory of Mind. Not everyone will have our perspective, or even our same hopes. We should never look to further understanding from people who are not in our shoes.
      For myself, I appreciate the thoughtfulness towards children with special abilities. I do not hold myself higher than others or expect people to rise to my hopes. Instead, I hear their words and I gather their true perspective and then I make a point to educate them in a way that is kind and gracious. I suggest you do the same; you will empower those around you and people will want to learn from you.
      To be frank, you sound as though you are better than. Would you have preferred The President pull out his thesaurus to cover each and every positive word to describe our children? Give the man a break - I say that and I'm not even a fan of him or his choices. But I will walk in the truth that I hope that each person has pure intentions... so THANK YOU Mr. President, I hope that you continue to expand your knowledge on kids with varied abilities.
      I can see that your intent was only good, but you have to understand other perspectives if you ever want people to understand yours. Life is much better when you are not on the defense. Be in the moment!

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  3. I wish Anonymous would have used a name as it would lend more credibility to your statement, which was awesome & exactly what I wanted to say... Obama is damned if he does & damned if he doesnt...

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  4. This is a good point. Yes we(people with special needs) are determined but we are so much more and it would be nice if people recognize the other traits that make us great too. I like the Special Olympics. I have a friend L who has Down Syndrome and is a amazing swimmer for the SO. I have another friend(NT) who volunteers with SO figure skating.

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    1. That's great, Kathryn! I hope I can at least get Max to see some games next year in our area, he still has a hard time ealing with crowds.

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  5. I am too a mother of a child with CP. He will be 5 in January. I have 4 kiddos running around here and must say I am not a big fan of Obama. His election effected us tremendously. We are military and they cut a lot of my sons benefits. That being said I do think this is overboard. I know people say things and do not mean them the way they come out when talking to me or my son. I tell him the same. I am sure I say things that come out and offend people and it is not at all intended to offend. I just pray those people have a little grace with me being I am beyond not perfect. I agree with Samanthas dad. My son has so many words to express how amazing he is. As of now he may never be able to follow in his daddys footsteps and fight for our country or run faster then most kids his age ever. He will still be amazing at showing people we have more similarities then differences and if we pick at every single thing someone says to them then we are teaching them to do the same and I would hope my son would stand up and SHOW people what he can do instead of having me tell them what he can do :)

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    1. I'm sorry to hear about the benefits, Anon. I hope the healthcare reform helps. I wasn't offended at all—I just hope for Obama and others to open their minds and see all the abilities our kids possess. So many times, all people can talk about is their spirit. And yes: I hope, as you do, that my son grows up to be a champion for himself, and other as well. Right now, I'm here to do that for him.

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  6. We fell in love with our work when everyone else said we couldn't do it. Our family and friends cheered us on and encouraged us to move to the next level. Our instructors kept challenging us. At games or concerts, they applauded for us. Why? Because we are passionate about what we do and we want to get better and better at it. Get up and show everyone what we can do, and whatever it is, strive to prove the naysayers wrong and surprise everyone.

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    1. Thank you. I'm the autistic girl (age 13) who is a fan of your blog. :)

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  7. ...Isn't that the point of the Special Olympics? You focus on determination and effort because those kids aren't supernaturally talented compared to their typical peers. In the Special Olympics, everyone is a winner. Everyone is talented. The reality is that real Olympic medalists are revered is because they are the best in the world at what they do.They have a rare level of talent. Despite how much fun your kid has running, they probably won't ever be that good at their sport. Saying, "Oh, but my kid is just as abled or works harder than typical Olympians!" belittles the people who spend their lives training for the Olympics.

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    1. Yes, Special Olympics applauds effort and determination. But those athletes have skills and abilities, too, like any athletes. Sorry that you can't see that. And I clearly pointed out that I wasn't comparing my son to anyone—that's hardly the point here. No worries, though, reading comprehension isn't a competitive sport.

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    2. I play the flute and do I say that I'm better than Greg Pattillo? No. I just say that I fell in love with my work and that I'm proud to do it.

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  8. Amen Ellen saying people are gritty is overlooking the fact that they have real abilities.

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  9. I remember when I was at school (a while ago) they handed out awards for achievement for some and effort for others... everyone knew the achievement was the real award.. the effort award was more " you tried hard but your still not as good as your peers"
    What im trying to say that I don't believe the point of the SO is to award people for effort or just turning up and having a go... it should be about celebrating and awarding great athletes... who yes have grit and determination. .but also have great skill and are the elite in their chosen field

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    1. I'm an autistic flutist and some people are better than me because they have played for five years and I've only played for one. However, my band director says that everyone is an important part of the ensemble, first or last chair. Sure, the first chairs get more solos, etc. but there has to be someone to take the harmony.

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  10. Dear Obama,
    Please create more jobs for Oregon. Also Please have all better insurance to Oregon. Please pay police officer's from all over USA to protect our schools churches jobs. CMS isn't a good security company for Oregon..... Obama when you are done for USA. I will vote for Ted Cruz cause he will be the better president then you. Obama stop thinking on yourself. Learn to think about America plus on God too. God is bigger and the judge of you and all of us. Take care Obama. God bless America and you too. Oregon state Government won't pay for me to wear braces. I think Oregon Health plan plus Trillium isn't a good insurance. Obama I have a learning disability plus I am in Special Olympics for Oregon.

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Thanks for sharing!



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