Tuesday, December 21, 2010

The stuff I don't take for granted

In the car with Dave over the weekend, I was pecking away on my BlackBerry, e-mailing a friend. I'm not sure why but it suddenly occurred to me how itty bitty the keys are, and how amazing it is that people have the ability to type with them.

Until Max was born, I never once appreciated the fact that my fingers do what fingers are supposed to do. But now that I've seen what sorts of fine-motor challenges a human being can have—the stroke impaired Max's hands, especially his right one—at times I am awestruck that my fingers are fully functional.

These thoughts randomly pop up. Like I'll be crocheting the granny-square blanket I've been making for Sabrina that may or may not be finished by the time she's in college (she's five) and I'll think about the intricacy of the movements required. Or I'll be twirling some spaghetti and marvel at the maneuvering it takes to do so. Or I'll watch Sabrina cutting paper with scissors and feel so grateful she can do that.

Max's hands are less stiff than they used to be, but opening them fully to grasp a toy or coordinating his fingers to hold the phone do not come easy to him. We need to work harder at adapting things around the house; I'm sure there's some sort of handle to attach to the phone that would better help him grasp it.

Tonight, both kids were in the bathroom brushing their hair in front of the big mirror. Max managed to hold the brush, but then Sabrina said in that sweet sing-songy voice she sometimes uses around him, "Maaaa-aaaax, do you want me to brush your hair for you?" He nodded, happily. And she brushed his hair then said, "Now it feels so soft!" And I totally melted.

If you don't have a kid with disabilities, chances are you've never once thought about the wonder of fingers that flex, legs that walk, mouths that talk. But if you do have a kid with disabilities, I'm betting sometimes you think about this stuff, too.



  1. I loved this post.
    Sibling sweetness could melt anyone's heart. There's nothing better.
    And the handles for the phones? It's going to sound funny, but try looking in a store (or probably a magazine, my grandma had bunches of these types of magazines) that cater to the elderly. I've seen some kind of handle/extra piece on old people's phones that could work well for Max.

  2. Love it. And I think about stuff I see all the time and I wonder if my kid sees it the way I do...totally with you on this one.

  3. great post Ellen
    actually if u have a disablity u think about these things too how u wish u could be like the others

    it is like the old Sesme street song I belive in little things

  4. Love this post. I feel the same way. And Sabrina is so sweet.

  5. I do think about this all the time. I was especially in awe of eating, chewing and swallowing while we were heavily involved in feeding therapy. Lately, however, I marvel at all the legs on the school yard that I see every day. I just don't understand how all these other kids can walk and Max cannot. All those childhood legs just moving so easily takes my breath away... can you tell I am having a "not so great mom of a child with special powers day?"

  6. I had my wisdom teeth out yesterday and still can't swallow or chew properly. All I could think about was how Max lives with everyday and I was completely frustrated within an hour. Thanks for sharing, this blog gives me as well as others a different prospective on life.

  7. When I watch my 12 month old son of average ability trying to pick up a Cheerio, stand, or other skills I take for granted, I'm reminded of how difficult these things are and how much work it is to master.

  8. speech and language! My 8-year-old w/ autism is non-verbal and has limited language skills. His eyes and grin often say a whole bunch!

  9. Having been raised with a father in a wheelchair, I am ever-grateful for the ability to walk. Every day I marvel at my ability to walk and pause to think of the limitations Dad lived with for 38 of his 67 years.

    Thank you for this lovely reminder of grace not to be taken for granted.

  10. Think about it almost every day, all day long. There is no way around it.

  11. So true.... My two girls take such great care of their brother, Luke. He is 8 1/2 and has fairly severe special needs. They are so sweet and compassionate with him, just like Sabrina is with Max.

    Absolute miracle to me that so many little things go so incredibly right enabling us to do the simplest tasks each day... Take nothing for granted and feel so truly blessed that although we deal with "special powers"...our three children are healthy...

    On another note, we were blessed enough by the help of many people to get Luke an iPad for Christmas this year... Any suggestions on the best app for a non-verbal child? Thanks for your help and advice!

  12. I think about this all the time. I think it's definitely a "perk" of having a child with special needs.

  13. I sometimes have the opposite thoughts. Everytime my older daughter (who does not have special powers) has a meltdown because her socks don't match or she doesn't have the right shoes, I look at Ronnie and think "Thank goodness - I don't have to go through this twice".

  14. I tend to agree with Nancy - I sometimes look at my sweet T-man and think, you give me no trouble because you don't talk (which isn't true, he just gives me a different kind of trouble than his "typical" brother).
    This is an awesome post. I try not to take anything for granted with both of my boys.
    Your Sabrina sounds like such a sweetheart. They are lucky to have each other.


  15. I was just discussing this with Marley's therapist today. Marley will turn one next week and my brother has a little girl who is 6 months old. Its sometimes tough to watch how effortless basic motor skills are for my niece and how difficult they are for Marley. She is definitely progressing which is exciting but she has to be taught every step over and over before her body catches on. Sometimes you just wish everything didn't have to be so tough every step of the way.

  16. Jolene and AZ, I am so touched by what you wrote. Sheri, my heart goes out to you, I've had those days. You too, C. I felt the same a lot more often when Max was younger and I did more comparing. C, I still sometimes wish everything didn't take so much effort.

    Kristen/Nancy--I don't have those thoughts because both kids give me a run for the money, in their own way!

    Julie, congrats on getting an iPad. We use the Proloquo2Go. Some people like Tap 2 Learn. Your speech therapist should be able to guide you, and maybe even trial these. Here's a video of Max using the iPad: http://www.lovethatmax.com/2010/10/and-now-ipadproloquo2go-videos-youve.html

  17. This post is so true! I sent an e-mail to Ellen about this and she asked me to post here for everyone's benefit.
    I agree with AZ as well; even as a person with a disability you think about this often. As a person who is always trying to test my own limitations (which is not always a good thing) I get so frustrated, because cognitively I understand what I'm trying to do, my body just isn't getting it. I had a long talk with my PT (I'm a convert to the manual therapy and craniosacral type!)about this Monday, and he gave me some interesting words I thought I'd share.
    Every body is made to work dynamically and work together with each part of the body. It's not made to be isolated into these compartments. So, even a completely neurologically "correct" system is going to have difficulty trying to do one isolated task you are asking it to do. Then he told me, when I'm working on something to focus on what I'm trying to accomplish only, not every step, because our bodies do all of that extra thinking at a level below our consciousness so that we don't have to; and when we try to over think or work against that, it becomes harder.
    Just something to think about! It sort of put my mind at ease that I don't need to constantly be "reminding" my body to do this or do that, so things will be automatic-for all of us!
    Anyway, there's a longer version of this over at my blog. But thanks for letting me air my perspective!

  18. So so true!!!

    You might try the arthritis foundation for adaptive stuff--I know my granny has a few things they've recommended, like attachments to door handles and phones with large puffy numbers!

  19. Watching a parent walk down the street effortlessly with their child gets me. Elizabeth is walking independantly but I usually hold her hand watch for things she can trip on or someone who may bump her and we are very slow. Walking to a nearby store to pick something up or walking her to school are not things that we can do and I envy those moments.

  20. Love it, as always.
    I appreciate shoes! Never again will I take for granted the fun shoes that little girls wear, because mine is relegated to full leather tennis shoes 100% of the time because of her braces. (Which are never attractive, btw...)
    I appreciate the super soft skin of babies and children because Monks doesn't have it.
    I appreciate the nights we get to sleep the entire night through because there are so many that are interrupted by her painful screams.
    I am so much more appreciative of the little things in life than others are. It really makes me feel blessed.

  21. I am thankful for special needs because I see myself in others like me. It helps me to include. Disparaging is wrong.


Thanks for sharing!

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