The Wishing

We took the kids to an open gym the other day. It’s the same gym we visited a year ago in Michigan, and Rhema absolutely loved it. Trampolines and balance beams, a rock climbing wall, foam pits, a large bouncy house, and lots of space to run and roll - it’s a sensory smorgasbord.

Rhema is naturally gifted when it comes to things like gymnastics. She has amazing balance and physical coordination and is absolutely fearless. The kid can pop a backflip faster than I can blink.

I have desired to find a coach who would be willing to work with her and a gym where she could get some real training. Her nonverbal-ness, short attention span, and difficulty understanding language and following directions have made it hard to find a good fit.

Needless to say, we were eager to take her to the gym for open play time. We were going with her aunt, uncle and cousins, and her grandparents would be watching from the balcony above.

The gym was crowded with children, but unlike some people with autism, crowds have never really seemed to bother Rhema.

However, when we arrived at the gym, Rhema was completely out of sorts. She seemed terrified and clung to Brandon for dear life. It was so uncharacteristic of her. We tried to get her to relax and eventually we were able to get her to jump on a trampoline.

But she was obsessed with her pants. Rhema does not believe in pants. Over the years she has come to understand that she must wear them in public. As soon as she gets home (or anyone else’s home) , she removes her pants – often in the doorway. When she is particularly aware of the feeling of her pants against her legs, she pulls the pant legs up to her knees and walks around holding them up. She looks quite bow-legged as she tries to run and walk while holding her pant legs up. (Carly Fleischmann, a nonverbal teen with autism describes a similar feeling of a million ants crawling on her).

This was the scene as she tried to make her way around the gym. She was distracted and disoriented. At one point, Brandon led her to a ladder that was laying horizontally with one end raised off the ground onto a large cushiony mat. There was a line of kids behind her and I watched Rhema try to climb the ladder while holding her pants up. As she tried to climb, her pant legs would drop when she put her hands on the ladder. Then she would grab her pants and try to start over. She repeated this several times never getting very far. It may be humorous to me one day, but I felt only sadness as I watched her struggle.

Soon she gave up on the ladder and began aimlessly wandering around the gym. She did something Brandon and I had never seen. She scrunched her feet and tried to walk around with her toes curled under. It was as if the mats on the gym floor were burning her soles. When she was not holding her pant legs, she flapped her hands incessantly or covered her ears. At the entrance to the bouncy house, she created a pattern of going up and down the stairs repeatedly while humming to herself, never entering the bouncy house. All the while, kids tried to wait patiently in line behind her.

It was clear that she was overwhelmed, but, truly I was somewhat baffled. Almost every weekend we take her to an inflatable playground or open gym, and she is fearless. She usually thrives in this type of setting.

I should have rescued her, but instead I made the biggest mistake of the day. I scooped her up and tossed her into a foam pit. Believe me when I say that normally this would be a sensory delight for Rhema with her body engulfed in proprioceptive input. I hoped this might be the very thing to put her at ease.

But when she landed in the pit she was literally paralyzed with fear. I’d never seen anything like it – her body was completely scrunched up and she could not move. Sheer terror on her tight face. Instantly I jumped in and got her out. Both of us were shaking as I apologized to her over and over again. Fighting back hot tears.

That was the end of our “fun.”

As I held her, I looked around the gym. Kids were jumping, playing, squealing, talking, laughing, dancing, and having the time of their lives. I could see Hope on the other side of the gym, happily participating in a group dance. It looked so easy for her. My niece, Rhema’s age, is a beautiful little gymnast, and she was decked out in her glittery velvet leotard and deftly swinging on the high bars…

And I gave in to the longing. I gave in to the wishing.

Lord, I want my baby to have a velvet leotard,” I said in a choked whisper.

 

Since the moment I learned she was growing inside me, I have only wanted everything for her… the big things, the little things, the typical things. That longing is always there – just under the surface. By now I know that it will never go away.

Sometimes the wishing leads me to become envious and judgmental of other mothers. I carry it around like a ball and chain.

I love her with all that I am.

What do I do with the wishing?

Give it to me.

 

It occurs to me that God has a knack for taking something little and making it great. (See David). Taking something weak and making it strong. (See Esther). Taking something old and making it new. (See me, my life, my heart). Taking something broken and ugly and fashioning it into a glorious work of art. (See any Christian believer saved by grace). Taking the stuff of pain and loss and creating a beautiful instrument of praise. (See Job).

So here I am again, Lord. Releasing to you the pain of dreams deferred and shattered expectations. I’m giving you my wishing. Do what you will.

 

After a rough day at the gym, you may think me delusional.

But knowing God

and Rhema

like I do,

I still think those two are going to blow my mind…

and there may even be a velvet leotard involved.

About these ads

27 thoughts on “The Wishing

  1. no delusions, just love .. and knowing YOU like i do, my only question is this:

    what color leotard do you think she’ll choose?

  2. Your posts often leave me speechless. This is one of them. I just don’t know what to write. I believe the right person is out there who can teach Rhema gymnastics. They just don’t know it yet.

    Hugs, and Happy New Year.

  3. We had a disaster at a place not unlike the one you went to a few weeks ago and it really surprised me also because Pumpkin Pie usually LIKES sensory play also. I was in tears before the party was over also. We had to leave early and I felt so bad not just for her, but for my other kids.

  4. Oh, I wish you lived by us. Kayla’s 1:1 aide happens to also be a kids gymnastics coach! I’m sure she’d love to have Rhema.

    I’ve made so many bad judgments regarding sensory stuff with my kids! I don’t know why on one day Kayla will love the ball pit but on the next be totally terrified of it. Sigh.

  5. Ah, Jeneil. Your precious baby will have a velvet leotard. And I know the Lord will have a extra special one just for Rhema on the new earth … one that will be beautiful, soft, and, well, velvety. One that will feel glorious on her skin … not like ol’ itchy pant legs!

    Yes, my friend. Not only will He do wondrous things through her one day, He is doing wondrous things through her right now. And you, too.

    So keep wishin’, and keep giving your dreams to Him. “If you remain in Me and My Words remain in you, ask whatever you wish, and it will be given you. This is to My Father’s glory, that you bear much fruit, showing yourselves to be My disciples.” (John 15:7-8)

    PS-I learned a new word: “proprioceptive”! Had to actually stop and look it up as I read your post. :-) Now, I just need to use it three times in a sentence before the day is over …

  6. Oh honey, I can totally see the velvet leotard thing. (Rhema can pop back flips? Wowsers!)

    It’s like the way that Joy will blow away the competition on the track some day.

    The sensory-smorgasbord gym near us has a special-needs gymnastics class… you should check out the possibilities in your area when you get back home…

    Go Rhema, go mama!

  7. Thank you so much for visiting my blog and entering the giveaway.

    This post has me crying – I can totally relate to this situation, both for what you want for her/you/your family and how impossible it is to know the right thing to do all the time.

    Blessings to you both.

  8. All,
    Thanks for the encouragement. Wow, it’s comforting to know that others have had similar experiences!

    Kathryn,
    “Proprioceptive” is one of the words we picked up after many, many occupational therapy visits. Once my mother and I took Rhema to a playground and I said, “This is great. Rhema is getting lots of proprioceptive and vestibular input.”
    My mother’s wry response was, “And I thought she was just swinging!”

  9. I needed to read this, for the times when I don’t want to give Him my wishing, when I want to hold onto it and somehow make it real, as if I could actually do it on my own. I know I can’t, but it’s so hard to let go of the dreams and expectations. Your faith inspires me!

  10. ‘envious and judgmental of other mothers.’ I know that feeling all too well. These days that feeling has morphed into a variation on a theme = ‘they just don’t realise how lucky they are’ where everything , every teeny tiny little thing is unappreciated and effortless.

    Similarly, around here where just about everything takes supreme effort and practice and time…..if and when it comes it is celebrated with glee.

    Very best wishes

  11. Backflips! Impressive! Oh yes, I was right there at the scene, you paint it so descriptively. And I can feel the wishing in your heart and the lump in your throat. You capture what we mommies are feeling. I remember a similar thing at a Burger King playland that ended with Josiah wimpering in the jam of the emergency exit door. It broke me up as the other kids whizzed by.

    I love how you keep releasing it back to God, and I pray he’ll return with a pile of leotards!

  12. Here’s hoping that the velvet leotard cures the million-ants-on-the-legs feeling. When my Taz went through his anti-pants phase when he was about three years old, it was so frustrating. Then on Halloween, he chose an Obiwan Kenobi costume and he loved wearing the Obiwan pants (well, to be more accurate, he loved wearing the nylon knee pants with attached mock boots). He wore them everywhere, daily, for many weeks, until they finally wore through. After that, he was willing to don regular pants again. To this day, though, he refuses to wear shorts because he can’t stand the feeling of hems skimming his thighs or knees. Meh.

    Please, my friend, don’t be so hard on yourself. I too have, (at least figuratively) thrown my boys into foam pits because I thought that would make everything better, only to see them react as if I’d tossed them into lava. Your intention was genius. *Shrug*

    Letting go of old wishes is painful, but think of all the space you’re creating in your mind and heart for God and new hopes!

  13. What a beautiful and honest post, and one that I can very much relate to. I’ve looked into my children’s eyes and seen their anguish in sensory overload and wished I could somehow make it better. I’ve looked around at the other kids enjoying simple things that overwhelm my kids and felt that sadness. I’ve made the huge mistake of doing something I thought would help only to make things worse – sometimes there’s just no way to predict when that will happen.

    I love the last paragraph of your post – God and Rhema no doubt make an amazing team!

  14. As we return from birthday party after birthday party where Devin ignored the other kids, stuffs himself on chips and steals open cans of soda, I can only say I feel your pain.

    I see people with their NT kids who just don’t get it. The urge to smack them upside the head and say “Hey Jerky, get with the program!” some days is overwhelming.

  15. when I read about the pants, I thought to myself, why not wear a leotard? And then you mentioned the velvet wish…. Will Rhema wear leotards or maybe a body suit?

  16. This is a moving blog. I bet so many parents of children with asd can relate. My son is 8yrs old and it brings tears to my eyes when he has to go though stuff like this. There are so many things he wants to do but sensory problems make it hard for him. I think teachs should have more of a understanding. I hope your wonderful little girls wishs are granted. I have a blog aspergersinfo.wordpress.com it’s all about my fantastic little boy. If u ever fancy taking a look then I would like that.xx

  17. MH,
    Yes, although Rhema has never worn a leotard she does wear body suits. In the past, body suits were very useful in keeping her from stripping altogether in public. Ha!

    Clairelouise82,
    Thank you. I have found this blogging community to be such a blessing, such a support. Just when you think you’re alone, you find that there are many others who understand your challenges. I have learned a lot from both autism moms and “typical” moms, and I’m truly thankful!

  18. As beautiful and poignant as anything I have EVER read. The triumph of faith has won. You have taken all that pain and heartache could produce and given back to God the kind of glory he deserves yet rarely gets from our lives. Your words put me to shame and bring me back to a place of true worship. Keep taking us with you on this journey Nealls. We need to see what you see. My eyes are red but filled with hope.

    …..And where is Oprah?!!

  19. Once again, a moving post that we all feel along with you. Just think of how far that little princess has come, and keep faith that everyday holds new promise for her. I know the envy feeling, I feel it every single time I see a “normal” child doing the simple things my boys have such trouble with, I also know the sweet gifts God has given them that other children may not have: a loving family, supportive teachers, and a community of those like you to share the journey..so we are lucky. Keep that leotard on the shelf for now, but she will get there… we all will together

  20. Pingback: Extra Special Olympian « Autism In a Word

  21. Pingback: There’s a velvet leotard hanging in my laundry room « Autism In a Word

  22. Pingback: Why she dances « Autism In a Word

  23. OMG, I just read your post and I cannot believe what you wrote about the pants. My daughter does the same, as soon as we get home, pants are off, t-shirt off and the changes into my husband’s plain white undershirt. She wears her leggings all ruffled up above her knees, and I fight it, because ohh leggings look so cute with her uggs. but never in a million years did I think about “a million ants crawling on her”

  24. Pingback: She can « Autism In a Word

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s