Wednesday, January 11, 2017

The painful parts of the form you're filling out about your child


Every year, around this time, I fill out a form for a camp Max attends. I know it's not going to be easy. Not because the form is complicated, but because of the questions it asks that force me to confront the reality of his progress.

There are parts that I relish, like where the form asks about social abilities. I write that Max is one of the most friendly, cheerful people they will ever meet. "Participates and plays well with others"—check!

For "Communication," I check off "single words" and "attempts words," which are sandwiched between "uses full speech" and "non-verbal." I note that although at times Max can be hard to understand, he makes his needs known, and that he will be coming to camp with his iPad and speech app. Elsewhere on the form, I make it clear that he prefers to be called "Fireman Max."

For "toileting" I note that he needs partial assistance. This, too, was hard won, and four years later (we finally made it happen during the week after Hurricane Sandy when we were holed up in a hotel) I remain grateful that Max mostly uses the bathroom on his own even if certain parts remain a challenge.

And then, I get to "Dressing." And once again, I am checking off "Needs total assistance." And it makes my heart hurt, because every year, I check that off. Max does well with shirts from the Tommy Hilfiger adaptive clothing line, but otherwise he can't put on shirts, pants, socks or shoes on his own. I'm planning to have his home OT focus on pants in upcoming months.

And then, I get to "Bathing/Personal Hygiene." And once again, I am checking off "Needs total assistance." Max can more or less run a washcloth over his body, but someone has to pour the body wash onto the washcloth because he can't manipulate the bottle to do it. Same goes for shampoo. Reaching his hands up to his hair to suds up is hard for him.

And my heart is hurting. But still: I hope.

"He cannot yet dress himself," I write. 

Yet. 

I feel the need to say that. Because who knows what progress he will make this year. Maybe, just maybe, come next winter I will be checking off "Independent" the entire form through. Really, though, there is no deadline. If it takes Max the next decade to totally dress himself and/or use the bathroom on his own, so be it. Progress is progress, no matter how long it takes to happen.

And if doesn't happen, well, my heart may continue to twinge when I fill out forms...but I will also be reminded of how far he has come.

17 comments:

  1. Oh, boy, this is pure truth! For so many years I found myself in tears completing my son's Katie Beckett paperwork. His comprehensive clinic visits give me a pounding headache too as our reality becomes so in-your-face.

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  2. You are right, progress has no time limit. I'm sure Fireman Max will continue to make great strides.

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    1. I know he will! Thanks, Kathryn.

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    2. Aside from the fact that we all eventually die, I agree with this statement.

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  3. It's no secret that we, as human beings, prefer to focus on our strengths.

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  4. FYI, blog reader/Facebook friend Sheri-Rose has recommended the following soap/shampoo dispenser, which she says has been helpful for her son: Simple Human Triple Wall Mount Shower Pump.
    https://www.amazon.com/gp/product/B002YNQX16/ref=s9_acsd_top_hd_bw_bvgwp_c_x_1_w?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=merchandised-search-3&pf_rd_r=5FEHVHRJ2ZW2B93NC548&pf_rd_t=101&pf_rd_p=e44e8fb4-a4ef-5a6b-af95-9e3e859d2242&pf_rd_i=13749791

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  5. Also FYI, the awesome Cara Liebowitz (of That Crazy Crippled Chick blog fame) has recommended a hair washer to enable Max to shampoo on his own, this one: http://www.alimed.com/etac-hair-washer.html?atrkid=V3ADWA342718F_20842381444_pla-151151853124__66599244724_g_m_pla__1o1&gclid=Cj0KEQiAzNfDBRD2xKrO4pSnnOkBEiQAbzzeQY7h1z5UfpIoJaK2AjrNaQotTkNwGqVXdT2TlPM3t_MaAr1F8P8HAQ

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  6. Beautiful Ellen. I love the word "Yet". It holds so much hope for the future! They might not be able to do it yet, but but we hope/believe that they will. Even if I'm in denial, yet gives me hope for the future. My mom still uses this with my 41 year old brother who has various challenges/disabilities regarding what he is still learning. He may still be at home, need assistance for many things, but is doing more then he was 10 years ago.

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  7. We never know what the future holds in story for any of us. If you would have asked my parents all of those years ago if I would be holding down a full time job and making my way in this world they would of said the same thing you have: I hope. Max is still young, and figuring out the world and how best to navigate it. He'll get there.

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  8. Yes and yes and then some. Bathing, speaking, potty training, dressing...these are all still on our "to-do" list. But I feel like as long as I leave them there they remain goals. They are still something we aim to "do."

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  9. Ellen
    For dressing all I need is a simple keychain loop attached to the pants zipper to hook a finger on and pull up. Also for buttons you might want to search the Internet for a "button hook" it has helped me with dress shirts a lot. There's a lot of trial and error but I am confident Max will eventually find out tricks to help himself out

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  10. Forms are the worst sometimes. Since my daughter is two, we still do so much for her, and sometimes it feels so weighty to think about all the things we may STILL be doing for he later down the road. Here's to hoping for the same progress as you this next year.


    Paige
    http://thehappyflammily.com

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  11. I feel like that too. I want to be in protests but my wheelchair would make it dangerous. I think constantly think about how I would be in the protest if my body hadn't betrayed me.

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  12. I had once heard from a paraplegic lady who was holding a good position working in a big company.. she was totally dependent on others for her basic needs.. she was fed , bathed, dressed but use to work with great Elan.. once she was asked how does it feel to be dependent.. she replied nothing... I am ok with it. I work.. if I am not able to do these things and there are people helping me with basic stuff it's ok.. I enjoy it.. i enjoy being fed, people dressing me up .. i just simply enjoy my life... It moved me.. I dropped it there... I don't think we should twinge or let it break us.. yes just avail them put ur efforts. If it happens great if it doesn't it's ok...God chose them so they enjoy life in this way ..

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  13. Every child has their purpose in this world. We all have our challenges. And we all have our talents. What we need to do is to help each other with the rough spots, and also help each other to find and use our talents. Special children are more work, but they usually give us more love and understanding.

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Thanks for sharing!