Thursday, November 1, 2012

Raising kids with special needs: What's on your blessings list?


"I'm too blessed to be stressed," said the cashier.

I was in a store the other week buying sheets. Purchasing bedding is one of my favorite forms of therapy—it's relatively inexpensive, it won't make me fat and there is something very comforting about new sheets. In recent weeks, I've been on one of those "What is my life all about?" streaks. You know the kind.

And then, the words from the cashier. I smiled at her. Ever since, the phrase has been in my head: Too blessed to be stressed. Too blessed to be stressed.

In the aftermath of Hurricane Sandy, I definitely feel blessed, and lucky that our family and friends are OK. I think "Too blessed to be stressed" has particular meaning when you're raising a kid with special needs. Some days, you get wiped out by everything you're juggling. Some days, you get down. Some days, the mere act of washing your face feels like a luxury. But when you force yourself to consider all the good stuff about your child (you know, actually take time to think), you get a whole new perspective.

What's on my Max blessing list:

• His smarts
• His cuteness
• That he walks, despite that doctors told us he might never walk
• His evolving speech and desire to communicate
• The good doctors we've found for him
• The excellent school he's in
• The many amazing and supremely dedicated therapists he's had over the years
• His smile and happy disposition; Max is sunny 365 days a year. Well, mostly.
• That he doesn't like SpongeBob SquarePants
• How much better control he has over using his hands; there were times when we weren't sure he'd ever be able to point, let alone pick up a spoon.
• His determination
• The iPad, his speech app and the world they've opened up for him
• His curiosity to explore
• His eagerness to learn
• That he doesn't notice it when kids stare (yes, I consider this a blessing)
• His vast enjoyment of life's little pleasures, whether he's pushing around a toy car or downing mac 'n cheese: that squeal of joy lifts me like nothing else.
• His vast enjoyment of life's big pleasures, like The Disney Cruise
• His noise-blocking headphones (thank you, sensory gods)!
• His Good Hair
• The programs that have welcomed him, like The Friendship Circle
• That he willingly and happily sits through his therapies
• His deep appreciation of chocolate ice-cream
• His snugglebunny tendencies

I'll be referring to this list going forward when I'm having one of Those Days.

So, what's on your kid blessing list?

This is one of a series of posts sponsored by CVS Caremark All Kids Can, a commitment to helping children of all abilities be the best they can be. Like them on Facebook!

22 comments:

  1. Ellen -

    I love you and Max (and Sabrina and Dave) -even though I only know you - The last few weeks have been hell - ask J. Newman - I shot her an email asking if she ever considered writing "I deserve a fucking casserole too!"

    Nathan is a blessing - it's the world that sucks - not every day just some

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    Replies
    1. My husband and I say all the time that our special kiddo is "normal" and the world is really what's messed up!!!!

      What if these special kiddos have it RIGHT but we are all living the perpetual lie of thinking about the wrong things, misplaced priorities, etc?????

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    2. I love this thought!

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    3. People who exclude have poo brain.






















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  2. LOVE! Not enough room to mention all the blessings poured on me by my 2 specials! Those are the things that keep me from a complete breakdown on those really tough days.

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  3. I happen to love Max even more knowing he doesn't like Spongebob!!

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  4. Life. That the cancer didn't kill him and he's here, to live life! We wouldn't have it any other way!

    Thanks so much for a fantastic blog!

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  5. for me that when Ryan does say soemthing it melts my heart. And I'm blessed by his hugs he gives the best hugs and the way he teases his sister with boogers,spit and other brother stuff.

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  6. Mine will soon be 30 and initially, it was a surprise that he got to be 6. Now the world is his oyster!
    My car insurance did not go up when he was 16 :).... I did not have to worry about sex, drugs. or rock and roll..... :)

    I consider my son to be the strongest person I know. With all that life has thrown at him, his courage has won out and he continues to be the happiest, sweetest, and most fun person I know. He holds no grudges, and is the most straight-forward person I know. I admire him.

    The world is all sunshine and rainbows when I see my son smile! There is nothing more beautiful than that!

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    Replies
    1. You only need to worry about the first two.

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  7. As always, a great blog.

    My Collin is a blessing in so many ways, but to name a few:
    He doesn't notice when others stare at him, but since he has such a huge heart, I think he pretends not to notice to make me feel better :)

    The best blessing is that he is sincerely content to have a great meal (even when it's a not-so-great tv dinner) and the attention of just one member of our family. He is a hugger and just happy to love and be loved.

    Wait, the best blessing is that he has made his younger siblings very compassionate, understanding young children, who appreciate all that they have. How great is that?

    Thanks again for your great blog. Each time I read one, I don't feel so alone. You get it!

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  8. Boo's therapists and teachers. Definitely on my blessed list!

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  9. Thank you so much for this timely reminder to stop and count my blessings!

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  10. Very sweet, and a great reminder! One of my favorites with my son is his big ol' belly laugh when you tickle him just right. With my daughter it is every new phrase coming out of her right now - amazing.

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  11. I don't have a kid but I do have a blessings list. Take a look:

    1. I am grateful for God
    2. I am grateful for my parents and siblings
    3. I am grateful that I can hear, see, feel, taste, touch and talk
    4. I am grateful for my physiotherapist, Gerda Bence, who doesn't put up with any of my nonsense
    5. I am grateful that I now have better use of my right hand than I ever did before
    6. I am grateful that I have Cerebral Palsy because it has made me more appreciative of all the things I can do
    7. I am grateful for you Ellen you've shown me a glimpse of what life is like through my mother's eyes
    8. I am grateful for our housekeeper, Nikiwe, who helps me out when my parents are at work

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    Replies
    1. 1.I am grateful that I have Asperger's Syndrome.
      2. I am grateful for my awesome band director and his patience.
      3. I am grateful for getting my math homework reduced. (I hate math)
      4. I am grateful for Max and how he overlooks cerebral palsy and has fun.
      5. I am grateful for God's loving nature.
      6. I am grateful for other special needs people.
      7. I am grateful for cranberry juice.

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  12. Great post - pinning this to read on "one of those days" including the wonderful comments. Have a great day and so glad you can see all the beautiful things about Max. That smile is gorgeous! Your husband may be right - we're the ones not enjoying our time.

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  13. I read your posts daily. This one was particularly inspiring yesterday. My one year old son has daily therapy sessions (OT, PT, ST). Your website provides my therapy. :) Thanks!

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  14. Boy oh boy did I need to hear this today!!!! Im in New York but thankfully, lost no power and the only damage I have is that my backyard fence fell down on one side. However, the kids have been home all week because New York City Schools are closed so they have been driving me crazy, to say the least. But concentrating on the blessing they are and how wonderful it is that they are alive and well, gives new perspective. I have been enjoying them, and will continue to enjoy them until school opens again! lol.

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  15. We are all blessed in our own special way!

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  16. What a great post! As I read your blessing slist I found myself checking off quite a few of the same blessings in my life. My daughter is not only severly developmentally delayed but she also has alot of health issues she has had to overcome and an uphill battle to stay healthy. But even with all of that she is an amazing child. I feel so blessed she is my child. Despite all of her challenges and the grim outlook of what her future would be like she has already proven the doctors wrong on about. In her three years of life she has proven that no one can predict how far a child can go when they are loved and given all the support and tools they need.

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  17. That Amelia can speak clearly
    That there is no cognitive delays
    Relieved there's no stiffness in her hands/arms
    Her ability to see/hear hasnt been impaired

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Thanks for sharing!



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