Monday, May 30, 2011

Raising kids with special needs: The girl next door


Summer's almost here, and I know it because A. is singing in her backyard. She lives next door to us and every year, she starts her solos around Memorial Day, usually in the early evening. I watch her from our back door. She stands beneath a giant oak tree, always alone. I'm never quite sure what she's singing, but her voice is clear and mesmerizing. She holds a microphone in her hand and raises it high at times, as if she is dedicating songs to God.

A. has Down syndrome. She is in her early twenties, and gives me the biggest wave hello whenever she sees me. She is the last of 16 children. After Max was born, I hoped that we might glean words of wisdom about raising him from her dad, Mr. R. Over the years, though, he's mostly just told us how impressed he is with Max's progress. "Hey there, Max, looking good!" he'd say from his front porch as Max wobbled by on his walker and then, later, on his adapted tricycle and these days, on the green tractor he drives like a demon.

I don't see A. that much. Every morning, our state's transportation service for the differently-abled arrives to take her to work shortly before Max gets on his yellow bus. I am not sure where A. works now. She used to help out at a frame store, but I think she switched jobs. I can always count on seeing her Halloween night, because she is a diehard trick-or-treater who seems to rack up the most candy in our neighborhood. Mr. R. is famous for giving out full-size candy bars.

Before I had Max, I felt sorry for A.

Now that I have Max, I don't feel sorry for her at all.

I notice how good her speech is and all the activities she loves to do, including playing croquet and growing a vegetable garden. I see how happy she seems, and how loved she is.

Our families are the only ones in the neighborhood with kids who have major special needs. I find it comforting to have A. next door. It makes me feel less alone.

I look at A. and wonder if I am seeing the life the future holds for Max. I'd like to know what Mr. R. and his wife have planned for her after they're gone; they are in their late seventies, maybe even early eighties. With all those siblings, surely one will be there for her.

Tonight, though, A. is singing in her backyard, I am watching her, and she is perfectly content.

It is good to have her there.

Can you understand why?

27 comments:

  1. I totally understand why.

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  2. A really lovely and special post. Thank you.

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  3. Beautiful post...thanks for sharing this <3

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  4. Love this post, so nicely written.

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  5. Miss A. sounds like she's found the secret to happiness that, sadly, some people never find. No one should ever feel sorry for her. To be honest, I'm kind of jealous.

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  6. This is a beautiful piece of writing. I loved that I read along and had no idea that A had a disability until you mentioned it.

    And I love that you could share how your perceptions have changed -- how you're able to see the richness of A now that you have Max.

    And of course it would be comforting to see A as a young adult so obviously happy -- and this family showing people how a different life can still be a good life. xo

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  7. I get it, totally.

    I hope her parents have a plan, though. I'd hate for her to wake up one morning and not have the support of her parents.

    I had to watch that "BEST BOY" movie two or three times before I got off my fat butt and started planning for the future (which is why I work two jobs now). For now, we're going to continue on as we do, but I will find a good setting for my oldest when he reaches adulthood if it kills me. It's always on my mind. I am not counting on my youngest to give up his life (with his issues, too) to care for my oldest. I want him to be supportive but they need to have their own paths. Like I said, it's all I think about many days.

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  8. Wow Ellen! This piece brought tears to my eyes. It is so beautifully written. Thank you so much for sharing.

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  9. What a beautiful essay. I can hear her singing, and it sounds perfect. Thank you for sharing this with us.

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  10. It is interesting how we go from feeling sorry for someone who has special needs or it differently abled to recognising all the CAN do when we have some personal experience with our own child/ren.

    I look at some kids I see with Autism and what I see is a kid who can go out and talk and toilet themselves and care for themselves and are really not all the different to any other kid. Mostly because my daughter still can't do most of those things.

    Beautiful post about A.

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  11. beuatiful post
    it's a glimpse into the future so it's spellbinding.
    we do need to plan for their future but I hope Ashley will feel as loved and secure as A obviously does.

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  12. Hey Ellen I was just wondering why you are worried about how's going to take car of Max when you should be concentrating on teaching him how to take care of himself because if you set your expectations high enough fo him he will be able to take care of himself and do so much more:)

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  13. There is a teenage boy who receives physical therapy at the same time my son does. He is always smiling and charming the therapists. It's therapy for me to watch him.

    I also loved your point about the shift from feeling sorry for your neighbor. It's amazing to me how many people who are close to us feel sorry for our son or don't quite know how to interact with him, but when they get a little time with him in a one on one setting they are amazed by him and have the opportunity to see the fun kiddo behind the walker and the communication disorder.

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  14. What a blessing you have. It certainly makes you feel less alone, less like the Universe has singled you out for that disparate, pitted and sometimes lonely path.

    Like reading this blog is for me. :)

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  15. There's so much I love about this, but I think you hit on how important a sense of community is for our kids with special needs, and their parents. A sounds well loved, as is Max. What a wonderful neighbor you have!

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  16. Wow. Great perspective.

    Story:

    There is a gal who works in our local small grocery store. She has down syndrome and can be chatty at times and melancholy and even angry at other times?

    I've thought the same thing as you mention here about feeling sorry.

    But you make me realize, no, she's doing great, she's working, she's happy when she's happy and all the other feelings when she's not.

    Thanks for the wake up call. (again.) :)

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  17. My A. and her family are moving away this summer. Having her family in our neighborhood has made me feel like part of a club and not so alone. I completely understand.

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  18. My great uncle and aunt had a daughter Cindy with Down syndrome. She eventually moved to a group home and still lives in that type of arrangement. Her parents have been gone for 5 - 10 years now and she is doing well.

    I understand your concerns. I had the same for my sister Annie, for my entire life until she died.

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  19. Beautiful piece. I can't believe that no one has commented on the 16 CHILDREN!!!

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  20. Absolutely! Love this post! Now if we could just get the rest of the world to read it too!

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  21. This rang so true for me. Thank you.

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  22. Beautiful post! It reminds me of a young woman around 16-20 years old, who lived up the sreet from us when I was a very young child. She lived next door to my friends house. Her name was Sandy and all the kids would make fun of her but me. Sandy had CP, she could walk and talk with little understanding. I would sometimes hide and sit by the fence under a tree and watch her. Sandy always had a pretty dress on that her Mom had made her. She would sing and skip around the backyard. Sandy was always so happy! She would see me staring at her smiling and would come by the fence, smile say hi, and I would and say hi back. All my friends would be playing in the back yard while I would do this, they had no idea. She had wonderful parents that loved her and took care of her. Back then not many parents would. Thanks for the memory!

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  23. Thanks, all. Marcy, you are so right: So many people never find that secret to happiness.

    Nisha, I do try to help Max be independent in all sorts of ways. But the pragmatic side of me says he will most likely always need some help. I hope he will surprise me. He consistently has.

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  24. I can! My whole foods that I shop at has many differently abled people working for them and they are working just like everyone else. I think that they also show us the positive joy that life holds for everyone. :)

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  25. I totally understand. We have a neighbor upstairs who has Aspergers and she comes and plays with my son who is PDD-NOS. She is three years older than him but they really learn a lot from each other. She is like a mom to him and he brought her out of her shell. When we met her she was so quiet and talked in a monotone voice. Now she is very social and is better at speaking. Sometimes she even gets too excited and I have to tell her to calm down. Having her here to play with just upstairs is such a blessing to me. We take turns having the kids over and I have become great friends with the parents who also have issues like me. It is such a blessing me to me too to have someone to talk to about special needs who understands.

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  26. How about a playdate for A and Max? It would be good for him to have a friend who lives close by and I bet they would be really good for each other. She could even feel like she is a mother's helper for you and play games with Max while you have some quality time with Sabrina (at home, of course).

    This would also be a good way for you to get to know the parents better, which might be very nice.

    Just a thought...

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Thanks for sharing!