The Window Man

“It’s a window in the world,
A little portal where you get a better view.
And the wonder of it all
Is all you need to see the Goodness getting through.”

~Andrew Peterson

Some time ago I wrote a post about Rhema’s fixation on windows.

In recent months that fixation has grown into a real problem. Rhema’s room has 5 large windows, 3 of which are bay windows. She would spend all night standing in the windows, going from one to the next in a continuous loop. Eventually she would tire and collapse on the floor just under the windows. Then a few hours later she would climb back up and resume her pattern.

These are the old-style, double-hung rope and pulley windows with stained blue panes. The ropes have long been broken, and every night Rhema would pull down on the ropes. I could hear the counterweight inside the frame screech up to the top and then come crashing down. Rhema liked the sound, and she particularly liked to hear it over and over in the middle of the night. The noise would drive me crazy. Cra. zy. 

Recently she upped the anty by jumping down from the window with the rope in her mouth, and then letting it go so that the weight could crash down.

Last month a concerned neighbor contacted me. She said she could see Rhema in the second-story windows at night and worried that she would fall out. “One night,” she said, “I started shouting to her from my kitchen, ‘Rhema get down from the window. Get down!’… And then you appeared out of nowhere and pulled her down. How many times a night do you have to do that?”

For a moment I wished I could just tell Rhema to stay out of the windows, and that she would actually listen and understand. If only it were that simple.

I talked it over with several people – Brandon, my father, my brother-in-law, friends. We thought of putting up bars (on the inside) or even boarding up the windows altogether, but worried about fire codes. Completely replacing the windows was also an option, but a very costly one. What to do?

Enter an angel by the name of Mr. Steve.

Mr. Steve, whom I’d only met weeks before, offered to work on the windows. First, he tried vinyl screens. But we thought Rhema could push right through that. Then he decided to place plexiglass in front of the windows, and it worked like a charm.

But Mr. Steve did not stop there. Before putting in the plexiglass, he observed Rhema in her patterns as she made her way around the room, climbing up and dancing on the sills, touching different surfaces, spinning pulley wheels.

“It’s really quite brilliant,” he said, “…what she does.”

As her mother, naturally my concerns have been centered on her safety (and yes, peace and quiet at night). But Mr. Steve’s comment gave me pause, and for once I was able to see Rhema through new eyes. I no longer saw a child with autism stuck in an aimless pattern. Instead I found purpose and wonder in the way she hummed and moved throughout her room, the way she communicated with light and sound, the way she experienced every surface. 

Mr. Steve installed various “toys” around the room to replace what she lost in the windows. A cord to pull, wheels to spin, handles to help her climb. For years Rhema has had nothing in her room except her bed – no dresser, no toys or books, no lamps (for safety reasons). I never imagined that her room could be a place she could enjoy. And Mr. Steve has big plans to make her room even more enjoyable (-there are even rumors about a rock wall!)

  

At my request, Mr. Steve nailed shut a bench beneath a pair of windows in the room. (Another midnight pasttime of Rhema’s is to open and slam the lid repeatedly.) But Rhema was able to pry open the bench in no time at all. A friend and I removed the lid from the bench altogether, and in so doing, created Rhema’s dream bed (aka casket)! Maybe, just maybe she will sleep better now, beneath her beloved windows, having the feeling that she’s surrounded on all sides.

.

I’m so thankful again for the many, many ways God provides for us through the love and kindness of friends.

Mr. Steve and Hope

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34 thoughts on “The Window Man

  1. I am so impressed with Mr. Steve and his putting in the toys for her. What a gift!

    Sometimes having someone else look at our kids with their set of eyes yields beautiful discoveries.

    And now sleep!

  2. The picture of her in the ‘box’ is too much!

    Never a dull moment, huh?

    I’ve got a $5 that Wikipedia adds your name to synonyms for Adapt.

  3. Mr. Steve!!! What a wonderful gift. To have her room be a place of enjoyment–a truly wonderful gift.

    Wishing sleep for you and Rhema.

  4. Tears over here. Thank you God for sweet, smart Mr. Steve.
    Rhema is on her way to having her own snoezelen room!
    P.S. Adam has an indoor rock wall and adores it! We found the rocks at Home Depot and Zach screwed them to a plywood board and attached it to the playroom wall!

  5. So beautiful that Mr. Steve appeared to help. I don’t think any of us can truly appreciate the grace with which you navigate the circumstances of your life. You are a beautiful mom. May Rhema sleep well in her new coccoon.

  6. Wow, I’d love to see the evolution of the room on here! I am so curious about these gadgets and gizmos he says he will put in for her! Nifty! 😀

  7. God is so good! It is awesome when someone can approach a difficulty with a fresh perspective and offer additional solutions as well. I pray you will sleep better too!!

  8. Dido to everyone! I was so worry about those windows and her falling out. Praise God for Mr. Steve for not just fixing a problem, but making it “Rhema’s” room with toys and all! What a blessing! And I love the cozy sleep place. I’m sure she LOVES it and pray it really does help her sleep better.
    And lastly, my upmost applause for being such an incredible mom. To be able to let go of the things you just can’t control and adapt to and mold what you can for you and both your daughters. Instead of fighting to make your life “normal” in a “perfect” world, you accept the life that God has given you with the grace and strength to live it out to the fullest. You are AMAZING! I pray I can be half the mom you are Neily. I’m so grateful for you in my life.

  9. Yay for Mr. Steve! I love that he stopped what he was doing and just watched Rhema and was amazed by her. And then knowing that she would need replacements for the objects that she could no longer get to.
    I think that it’s awesome that you are allowing her to sleep in the windowseat. Is she sleeping better? That made me think that Christian would sleep better if he had a place like that to crawl into for snoozing. Hmm…

  10. Jeneil, this is wonderful of Mr. Steve! Sometimes we do just need another perspective…which is so hard to get when you are a single mom with such a high maintenance child.

    I know that I’m always trying to figure out what Jonathan needs so that I can find an acceptable replacement. He loved to climb the frame of his door, so I put a chin bar up. He loves to hang, my dad built a ladder in our garage (like a rock wall), he loves to jump on the bed, so I got a small trampoline…etc.

    I love how Rhema figured out a bed for herself. I wonder if she is like Jonathan, who knows what he needs, but couldn’t communicate. Our OT just told us to watch him and then figure out acceptable replacements for him.

  11. My son had a climbing wall in the basement of our home – a safe place for him to burn all the extra energy he had. If the climbing wall pans out, would you please contact me so that I could send you some of his holds? My son has long outgrown his wall and I would love to see someone be able to use the holds. Thanks.

  12. That is awesome. I’m glad she’ll be safe now. We also have nothing but a bed, a chest with no lid and a trampoline in Daniel’s room. It’s just interesting to read a similar story….

  13. So wonderful. I love the new “bed”. Sometimes we have to step back and “try” to see things through our childrens eyes. Steve was able to help with that and bless him for it!! Ok, I hate to say this but are you nervous about the long cords getting around her neck? Some have a “give away” feature that would break off if too much weight was on it. Sorry, but I worry about safety too! I love how she looks playing in the picture. It has a magical quality!

  14. i love how God sends us exactly who and what we need if we will let Him.

    in my world, mr. steve would hook up rhema’s room and then put it in his portfolio of work he’s proudest of. he is amazing! sounds like a perfect niche market for him! hmmm….

    love it!

  15. Oh, J, what a wonderful man. May we all pray for blessing on Mr. Steve.

    I am sorry I have been out of touch with you, J. I am still waiting for my “Oh, things are finally starting to get better” moment.”

    It’ll get here. But I am afraid it will be a while.

    I am thinking of you.

    Leah

  16. I LOVE (and need) people like Mr. Steve in my life. They change our despair into joy with a single word, change the perspective of others on our situation, and transform limitations into endless possibilities. Not only that, looks like he has power tools! and is a man of action–not just words. Gotta love it! Praise God.

  17. Mr. Steve sounds wonderful! I have meant to tell you how much I love your blog. My son is pretty “high functioning” (I really hate that term but I haven’t come up with another one yet!) and yet some days I sink into utter despair, esp when contemplating the future. Your blog is very calming and joyous and always makes me feel better. You have a very upbeat view on life and a deep faith. Thanks for your words.

  18. How awesome that she’s going to have a room where she can find joy and comfort! It reminds me of an episode of Extreme Home Makeover where they designed a room for a boy with autism.

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  20. Wow, angels are among us and Mr. Steve is one of them!! How awesome that he not only fixed the window to make it safer but took the extra step of adding things especially for Rhema to play with.

    And the new “bed” under the window – that is great :). Is she sleeping any better there? I pray for you to be able to get some rest too!

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