Monday, October 31, 2011

The gift of Max: how my child changed my perspective on disabilities

Dave and I are walking into a local diner to grab a bite; our babysitter is staying late, and we're enjoying a rare weekday night out.

"Hello! It's cold outside, isn't it?" says a man standing by the front door. He's a tall, portly guy with a friendly smile.

"Yes," I agree, "it is."

Dave and I sit down at a table.

"That's a good table!" the man says. "Yes!" I respond, smiling back at him.

Dave and I get the menus, order dinner, talk. The man is by the countertop now, speaking to the waitresses about the weather. He says goodbye to them and then he stops by our table.

"It's getting chilly outside," he says to me.

"Yes, it really is," I say.

"But we had some beautiful days in October!" he says.

"That we did," I say.

"October is my favorite month," he tells me. "Also, June, July, August and September. And October."

"Those are good months!" I say. "September and October are my favorites."

"It never sleets in September," he says.

"No, but it just might in October—I heard it's going to get very cold," I say.

"November is usually cold and December is even colder and January is colder," he tells me.

We keep talking for a minute or two about the weather. Everyone at the tables around us, mostly older guys sitting alone, are looking down or away, anywhere but at us.

The man tells me goodbye, starts walking to the door, turns and comes back.

"I'm sorry for talking with you," he says.

"Please don't be sorry!" I tell him. "We like to meet new people!"

"OK!" he says.

He heads to the door, turns and comes back.

"That's good that you like to meet new people," he says.

"We do," Dave tells him.

And then he leaves.

The waitress stops by with our salads. She knows our family, knows that we have a kid with special powers. "He's a great guy," I tell her. "Is he a regular?"

"Yes," she says, "Elliot has been coming here for years. He's awesome."

And then, I can't help it: I want to know about him. Whenever I see adults with disabilities, I am overly curious about their lives; someday Max will be one of them, and I am inspired by adults who are independent. So I ask: Does he drive himself around? Does he live alone or in a home? Where does he work?

He drives, she tells us; he lives by himself, he works as a teacher's assistant at a school, he has autism.

As Dave and I eat, we talk about Elliot and how great it is that he is so self-sufficient. But something is bothering me. Really, really bothering me. Finally, I speak up.

"If we didn't have Max," I say, slowly, "how do you think we would have acted with that guy?"

Dave looks at me. "We probably would have been less open to speaking with him," he admits.

And that is exactly what is bugging me. I was glad, genuinely glad, to make conversation with Elliot. But if I didn't have a kid with special needs, I most likely would have been wary. Not unfriendly, because I'm friendly to everyone, but more hesitant to engage in conversation. I might have considered him "odd." And it's disturbing to think of how close-minded I might have been if I didn't have Max.

My friend Hallie recently shared a story on my blog about standing up to a teen who used the word "retard." In her post, she admitted that she and her husband freely used the word before they had a child with Down syndrome. She got a few sharp comments from people who wondered how she could be so "righteous" and "hypocritical" about the word "retard," given that she herself used to use it.

Hallie was being very candid. It took having a child with special needs to change her view of people with special needs, and how they are treated. Same goes for me and many other parents of kids with special needs, I am sure...even if it's hard to admit.

What scares me is that these are the perspectives Max will face for the rest of his life. So many people out there don't know what I now do: That kids and adults with disabilities aren't to be pitied. Their personalities are not defined by their disabilities. They may speak, move and act in a unique way but they are more similar to others than they are different. Their lives can be as good as anyone's. And, really, what is typical, anyway?

Thanks to Max, I've met wonderful kids and adults I might have never met, or been hesitant to meet. I've come to understand and embrace a world I might have never known. My mind has been opened and enhanced.

That is the gift of Max...just one of many.


  1. I do not have a special needs child -- I came upon your blog somewhat by accident. Thanks to it and others in the special needs community, I am so much better at reacting to special needs kids and adults. I'm like you - I'd never not be nice or friendly to someone, but thanks to your blog, I now engage more and would never ,hesitate to offer a mom. who seems overwhelmed, a helping hand. Thanks for opening my eyes.

  2. Oh gees! Sorry for the typos -- I suppose I should have read it through before I hit publish! Have a great day!

  3. I don't think you're alone on this one. I can imagine many parents feeling exactly the same way you do. I honestly think that you shouldn't be ashamed, just thankful. Thankful that now you're different and thankful that now you know. I would honestly keep telling others about your story in hopes that even without having a child with special powers (yay!) they might start to understand. I'm 17 and am not planning on having kids anytime soon, but I want to become a special education teacher after realizing that so many people cast those with special needs off as 'odd' without really getting to know them. The main reason I chose special education is because I saw personality and so, so much potential behind all the kids I worked with that I NEVER would have if I had dismissed them right off the bat. Just have faith in people and do your best to show them what you now know.

  4. Ellen, everyday I worry about how people look at and treat Ryan. He is clearly socially awkward. At 4 years old, I am glad he has no idea how mean children can be. I as a parent need to just learn to turn my head and be thankful he doesn't know how mean some kids can be. I now also seem to notice how often I will engage a child or person with special powers, where I don't believe I would have without Ryan. I am glad he has made me a better person.

  5. Beautiful post!

    I talk to my 5 year old about how people can act differently, look differently but you still greet them, talk to them, play with them. This was after an episode on a playground where a boy was friendly to my daughter and she shied away, because, she later said, "he talked weird".

    Every time I remind her of this, I am also reminding myself.

    Thank you for this post.

  6. Once again, Ellen, you nailed it. Thank you for your honesty; I would have to confess the same is true of me. It's the way we're conditioned, unfortunately. It's no excuse but kids--our future adults--want to fit in, and anyone who is "different" is mostly shunned, at best, and treated with cruelty, at worst. (I can't help but think of "Lord of the Flies.")

    Right now, by and large it's only when you love--or have come to understand and respect--someone who isn't "typical," whatever that means (!), are you able to give everyone a chance. What a delightful exchange you would have missed if you were closed off, if Max had not taught you to be open to all.

    Lately, I've been wondering a lot about how a boy I knew in high school is doing; I'm sure he was an Aspie. I think of all the times he was teased if not bullied. I never did anything like that and I'd like to think I was polite, but I'm certain I also avoided him, didn't want to sit on the bus with him, etc. On the other hand, some kids were genuinely fascinated by his amazing knowledge of every sports stat imaginable. I'd like to think he found his place in the world.

    I hope that as more information gets out there, the more understanding there will be. The comments from Patrice and "Clueless" (btw, if you're teaching your daughter these lessons, you're not!)pay testament to how much you're contributing to the cause.

    I am a big fan of James Durbin for many reasons. I'm thrilled by his talent in an of itself but am also so happy that it's gotten people to see beyond his Asperger's and Tourette's. (Less talented *different* contestants on Idol haven't fared as well, to say the least.) He's doing so much to increase awareness and acceptance, and those who cruelly bullied him online during the show were quickly condemned and shut down. There's a reason he's a hero to the special-needs community and I wish him a long and successful career. I hope more and more people will embrace his mantra: "Different is the new normal."

  7. I must stop reading your posts at work. Tears are running down my face. Kade was with us for 3 years, and in those 3 years, like you, our outlook changed completely about kids with Special Powers, or even just a child in a wheelchair. Now when we are out somewhere, I am pulled to kids in wheelchairs. I know they are often ignored and given pity looks, and they shouldn't be. Just a simple hello works wonders!

  8. When your heart shatters because you have a child with a disability, the rebuilt heart is bigger, and so much more permeable.

  9. Kudos on this post, it's incredible!

  10. Ellen,

    I know what you mean. I receintly gave a talk at a women's church retreat. I compared Luke's (and mine) journey with autism to our Christian (or any other :-) journey. One aspect of any journey in life is where you stand. To para-pharse another speaker - "Where you stand determines what you see; what you see determines your action/response"

    Before Max, you stood in a different place. Before Luke, I stood in a very different place. Nothing against where I was, but I like where I am now.

  11. having kids like our changes us. It uproots everything inside us and replants something new and versatile. I just went through a very similar thing myself

  12. While I've always been drawn to "the underdog", I am so much more open to individuals with all types of special needs because of my sweet Bird.

    My eyes have been opened to a whole population of people that I'm sorry to say I would've missed out on knowing before.

    Yes, my life has been changed by autism. But I'm hoping that some of the changes in me have been for the better.

  13. I unfortunately agree with you. It's sad when people don't know how to talk to people with disabilities. I always like when people talk to me nicely. I always wonder what their life experiences are, and most of the time I find out they have some experience with disabilities.

  14. There is this guy I know who has a pretty severe case of CP and he's awesome. He is in his 30's?? and his name is Roy. I've always loved Roy (even before I became a mother). I'll leave you with a link to him walking...which is a really very big deal. (Roy Walking for a fundraiser) (Roy throwing the first pitch at the St Louis Cardinals baseball game...The World Series Champs of 2011) You can't see it, but he's wearing an Ankiel Jersey...which is funny because he was the worst pitcher the Cardinals has ever had.

    Roy tells jokes and is so funny!

  15. I don't have a kid with special needs, but through reading your blog (and several others) - as well as getting to know an adult with Down Syndrome within the last several years - I find that I am much more at ease around people with disabilities as I used to be. With that in mind - and this probably won't sound strange to you, Ellen - I have actually considered adopting a special needs kid someday because I want to know that joy. :)

  16. One of the beauties of having a disabled child is that the siblings benefit, too. My youngest child has Autism Spectrum Disorder. His sister, who's 3 1/2 years older, has always helped to look after him. When my daughter started at a new secondary school where she knew no one she noticed a classmate standing by herself, so she walked up to that classmate and started a conversation. That classmate has been her best friend for 4 years, and her friend happens to have dwarfism. Thanks to having a little brother with special needs my daughter wasn't remotely concerned about starting a conversation with a girl who was "different", and I'm incredibly proud of that.

    1. One of the beauties of having a disabled child is that the siblings benefit, too. Umm there is NO such thing as a "disabled child". Newsflash~we're in 2014, the preferred wording is a child with a disability~. should know better.

      And contrary to what that you think, the siblings dont always benefit. Not if the sibling is expected to look after the kid with a disability.

  17. How beautifully our hearts are opened as we recognize and receive the gifts our children offer us! More love flows in and out than we could ever have known before. Thanks for this great post!

  18. *sniff*
    So true.
    I think about this a lot.

  19. The place where I work is great at employing folk with additional challenges. A guy called G collects our baskets from the checkouts three afternoons a week. Mostly he fits in. He's a little noisy. He joins in conversations which he doesn't understand. He even tells folk that he's the boss when the manager's off. But mostly he's welcomed as a colleague and cared for by all but the most mean-minded. I think we're changing as a society and this is in partly due to people like you who can verbalise your journey.

  20. My experience is different of course, as I was the kid with special needs that shifted the world for my family. My choice was more along the lines of, knowing what I know, would I want my child to have this experience?
    That was a great post - as usual! - and I thoroughly enjoyed it!

  21. I just love your candour. Thank you so much for opening our eyes.

  22. I am crying happy tears because I feel the same way. How lucky we are that our eyes have been opened to all of the wonderful people in the world!

  23. Being an adult with a disability is challenging at the best of times, but I wouldn't change the way I am for anything.
    Unfortunately it means that sometimes we see the worst of people but it also means that we see the best of people and sometimes even impact lives.

    Max is gonna be an awesome adult!

  24. OMG the stranger you described is exactly like my 11 yr old son who also has autism. I'm very protective of him and fear for what may happen when the time comes where I can no longer be there for him.I hope the future has a lot of changes because I am also one who did not pay attention about disabilities until it happened to my son. People are not as sensitive and don't understand as much until it happens to them.

  25. I agree that your friend shouldn't be criticised because she now knows how hurtful the word is. However, in her article she is extremely cruel in how she describes the young man.

    Your friend should teach others about how painful the word Retarted is. However, she should also learn that dropping that word from her vocabulary isn't enough. If she wants people to respect stop being hateful and mockimg of differences, then she most certainly must be respectful herself. She must stop replacing the hateful word "retarted" with such hateful statements like "dumbo ears."

  26. Hi Ellen,
    I'm so glad I found your sight. I'm not yet a mother but volunteer for a mothers group by loking after there kids while they have time out (with some other volunteers) because of the way i was brought up and that my mum works with mentally challenged adults I am more aware of people, but I still feel weary sometimes. I hate that i do, but hopefully reading more and thinking more will help. I love your blog and it has made me think so much. Thank you and please keep at it.
    p.s. Max is the most adorable kid :)


Thanks for sharing!

Related Posts Plugin for WordPress, Blogger...