Knowing When to Back Off

Barbara at TherExtras asked us to participate in a blog carnival on the topic of recognizing readiness. It’s a happy and forward-looking topic. You are invited to take a look at my response here.
Some disorders that include loss or regression find us struggling to accept when our kids are not ready to move forward. In fact, they may be losing ground. It’s a difficult thing, but it’s important to acknowledge honestly.
How do we know when it's time to keep “pushing” forward and when it’s time to back off? Pull up a cup of coffee and let’s work through this.
Please allow me to share a little background.
A seasoned special needs parent shared a platitude shortly after our daughter was diagnosed with Rett syndrome. No doubt it was offered with the best of intentions. But I took it much too literally and ended up taking on tremendous guilt and self-depreciation. Back then, without the perspective of time or experience, how was I to know to question this “wisdom?”
That awful cliché was this: “Use it or lose it.”
By association, you can also conclude that if your child does lose a skill, it must be because you didn’t push your child hard enough to continue using it. Any loss she suffers, then, is obviously all your fault. At least, I made that connection.
Wrong direction to push an already wounded parent.
Rett syndrome is not the only disorder to cause skill loss or regression. There are others. But it’s the one I’m personally familiar with, and so that is the perspective I speak from.
In Rett syndrome, toddlerhood is an age in which loss of skills is the hallmark symptom of the disorder. These losses simply are. They are not within the child's control.
Like any parent crazy with grief and fear about the outcome of the diagnosis, of course I pushed my child harder than I ought, to do more than she was capable of doing. I certainly didn’t need trite platitudes haunting my every waking moment and robbing my sleep at night.
How much better all our lives would have been during that difficult period if someone had gently taken my hand and said, “Do your very best to help her keep all she can. That which she cannot keep, let go.”
So how do we do that? How do we know when to do our best to encourage her to move on? How do we know when to let go?
Our kids are our best leaders in this. We need to listen and to trust them. They are the ones living inside their skin, knowing when something is too overwhelming or frightening or painful. Toddlers may not have the best judgment at ALL times (for instance, the toddler who tearfully refuses a nap is probably the toddler who needs one the most), but we need to trust their perceptions of their abilities. Especially when their responses are consistent over time.
The most poignant story from our experience discredited the “Use It or Lose It” theory and eventually taught me to trust my daughter’s lead.
I was terrified watching her losing her ability to eat by mouth. She had been a great little eater up until her first birthday, picking up Cheerios or green beans with the finest pincer grip. She nibbled on grilled cheese sandwiches cut into long “fingers.” Homebaked chicken nuggets were an easy favorite protein. She had even begun feeding herself using a spoon.
Slowly, her ability to chew began to deteriorate. I found myself cutting her bites smaller and smaller. Large bites merely got mashed into globs that she struggled to swallow. It alarmed us that her eating skills were getting worse.
She stopped using her spoon and threw it instead. I also noticed that her amazing pincer grip, the one that allowed her to pick up dust particles from the floor, had regressed into palming. She’d try to shove fistfuls of food at her mouth and sometimes missed completely. She was hungry and acting out in frustration. I interpreted this as being naughty.
Enter her diagnosis:  Rett syndrome. I was terrified reading about the losses she might experience. When that older, more experienced mom cited the “Use It or Lose It” theory, I thought that maybe, if I worked hard enough to keep her using what she still had, she wouldn’t lose anything more.
I pushed. Five hours a day I pushed her to eat. We devoted one day a week to oral motor therapy and the lengthy drive to get there. I pushed her when her reflux told her to stop eating. I pushed her when she felt threatened by swallowing. I pushed and she cried. We both cried. No amount of forcing her to “use it” was keeping her from losing her chewing and swallowing.
After a year of pushing, a swallow study revealed why she resisted eating. She had been aspirating the bites I forced her to eat. The medical test explained what she did not have words to tell me.
Can you spell g-u-i-l-t?
How must I have made her feel, cheering her and pressuring her to do something she physically could not coordinate?
That test told us it was time to back off. She was no longer ready to eat by mouth. She had known all along, and she was trying to tell me. I hadn’t listened to her. While listening is certainly the first and best step, medical tests can also provide helpful information to let us know when it may be time to back off.
Medical tests can confirm bone or joint issues that cause a child to suddenly stop walking. They might confirm an illness that causes a child to stop swallowing food or saliva. They may confirm an inner ear infection that causes dizziness, impacting a child’s gross motor skill. Before we jump to panic mode over difficulties with a skill, we need to explore the possible medical explanations.
To be fair, when kids can’t use a skill because they are sick and bedridden, it can take a tremendous amount of work to recover a dormant skill. But we don’t need to immediately panic that the skill is permanently lost. There is a possibility it may be gone. But it may just as well be waiting to return.
While our daughter has yet to walk independently, she has come seriously close about four times in her life. Each of those periods of progress were interrupted by setbacks, whether illness or seizure. Those setbacks did not stop her from trying hard to regain her previous level of skill.
Many families can share similar stories.
Generally, especially for seasoned parents, there’s a lot to be said about trusting your intuition. Deep in your heart of hearts, you probably know if it is reasonable to push your child to practice a skill or not.
In the case of my daughter’s loss of oral motor skills, my intuition was no help at all. At other times, such as continuing to look for sparks of readiness for independent steps, my heart said to keep right on encouraging her to keep trying. Right now my heart does not say that; she battles issues that prevent her from being ready right now…but maybe down the road she will be ready again.
And that is the place of hope where I’d like to wind things up. We may not see readiness for a new skill today. In fact, it may be time to put a frustrating skill to rest. At least for awhile. Because maybe, with prayer and faith and hope, there may come a day when that readiness again raises its little head.

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We prepare the conditions. We ready the opportunities. We pray. We wait. Just as faithfully as the crocuses push their way out from below the soil in the spring, readiness for that skill may re-emerge.
But pressuring, fussing, forcing will not make the crocus bloom. Neither will this ready the soil for that tender skill.
Is your coffee cup is empty now? Mine is. I hope this has helped. It has helped me tremendously. Thanks for sharing this time. I appreciate it. “Do your very best to help her keep all she can. That which she cannot keep, let go.”
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Be sure to check out Barbara's blog carnival at TherExtras!


Aadhaar said...

Beautiful post, thanks for sharing.

Rose-Marie said...

Thanks, Eric. That means a lot coming from someone who has lived through the experiences you have.

Anonymous said...

What an insightful take on the idea of readiness - when to back off. Thank you for this excellent post, also, Rose-Marie.

I know the emotions of receiving a diagnosis for your child will resonate with many readers - but your gentle words will also help them separate their emotions from what their child is showing them. Barbara

Rose-Marie said...

Thanks, Barbara. I hope other readers will find some reassurance and hope here, even in the face of a diagnosis marked by regression or loss. One thing I notice about parents in this situation is how observant they become of the tiny stepping stones of progress in skill development. It's wonderful to see people celebrate these little miracles that kids have worked so hard to gain or keep.

Floortime Lite Mama said...

you made me weep
SO beautifully written
Congrats on your prize
VERY well deserved

Barbara said...

You won the carnival prize!

Rose-Marie said...

Yip-skip! Thank you so much, Barbara! I enjoyed participating in your blog carnival and can hardly wait to jump into the posts others submitted--I know they are fantastic.

Thank you, K - Floortime Lite Mama for your lovely complements. I appreciate them very much. And now, I'm eager to read your post for the carnival!

Your Therapy Source Inc said...

Excellent post!!! I blogged about it over on my blog. Sometimes as therapists we lose sight of when to back off. I think we need to listen closer to parents intuition. Thanks.

Rose-Marie said...

Thanks so much, YTS! I appreciate you sharing about it on your blog.

And by the way, if folks here haven't checked out the excellent blog by Your Therapy Source, please do stop by and take a look. There is SO MUCH great stuff here!