Overcoming paralysis with a single step

In a recent stress dream, I sat in an airport coffee shop knowing I was supposed to board a plane, but with no recollection of when the it was going to take off or from which gate. Despite being surrounded by information counters and departure displays, I just sat and sat, paralyzed and ashamed, with no sense that there was anything I could do.

Of course, these stress dreams usually occur for a reason.  My son has been getting hurt lately due to an unusual symptom that makes him fall down at sudden noises, and I’ve known for a while that it’s time to do something about it if I want to keep him safe. But the anecdotes I’ve heard from other parents who have kids with this rare syndrome have given me the impression that there aren’t really any good solutions, and each one caused its own negative feeling. The options appeared to me to be as follows: have him start using a wheelchair (makes me sad to think of limiting his mobility on purpose), start on heavy-duty personality-deadening anti-psychotic medication (ugh!), finding a helmet or brace or full body bubble wrap (makes me worry that he will incur even more stares than normal), or collaborating with industry for new applications for existing technology for sound-blocking headphones (makes me feel exhausted just thinking about it), etc, etc. Or I could just doing what I’m doing now, holding my son’s hand whenever he is standing up, even in the house (which is making me feel strung out). So I have been doing nothing, just sitting at the airport waiting to miss the plane.

This morning my husband and I had a quick huddle: I would ask the parent community of my son’s syndrome for their advice, my husband would research headphones. Within minutes of posting my inquiry to the Facebook group (“Help! It’s time! Tell me what you did and help me figure out what to do!”) I had responses. Not perfect answers, but ideas. I realized that many of my fears were completely exaggerated. The drugs weren’t all bad. There was a special walker that could work. The wheelchair wasn’t the worst thing. And most of all, there was company and commiseration.

My recent dream hit all my nightmare buttons: being late, unprepared and disorganized, inconveniencing and disappointing others, appearing and actually being incompetent (two separate but equally humiliating fears). But what really scared me in the dream was observing myself be unable or unwilling to do anything about it, the acceptance of paralysis. Today reminded me that there are plenty of times I’m scared stiff, and that sometimes all I need to do is to take just one small step, especially when that step is asking for help and companionship. Because being afraid is bad, but being paralyzed by that fear is the real nightmare.

Do you have a scary aspect of your child’s care or development that’s got you frozen? What small action could you take that could help you get unstuck–even if it’s as simple as asking for company?

 

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About Cristin L.

Earthling, pilgrim, peace warrior and special needs parent
This entry was posted in developmental disability, special needs parenting, special needs parenting, IEP, autism, Down's, special education, ABA and tagged , , , , . Bookmark the permalink.

6 Responses to Overcoming paralysis with a single step

  1. Oh Cristin, I miss you. It has been so long and the connection still feels so close. YES, with my gender non conforming kid I hit paralysis along the way. I loved this piece–and especially your incisive observation that appearing as incompetent and actually being so are two separate and real kinds of humiliation! The observation was so funny and so real. I connected with it at once. Sending love. Wishing you and the family well through this hurdle. XOXO

  2. Cristin L. says:

    Miss you too. But here we are together, which is pretty cool. Glad the experience resonated. I’m going to be in touch soon–doing an at home retreat this summer and I need some ideas for dharma talks and guided meditations.

  3. Susan St. Amour says:

    I am always happy to see your post in my email I am down the road from you – my BD is 43 now, so I have some voice of experience thoughts to share.

    You are an excellent mother, which really is all you can hope for, because none of us can be a perfect parent for more than a nanosecond. So please be kind to yourself in the expectations that you put on yourself. Excellence is good enough. In fact, good is good enough, too.

    As for “freezing,” I think that it happens to all of us. What matters is how you respond to it. Instead of fearing it, I would advise trusting it, which really means trusting yourself and trusting that your unconscious mind is working on the problem and will give you a solution in due time. Turn your conscious mind away from the problem, get some sleep, or go for a walk, and just trust yourself. The answer will come to you, in a dream, or in a thought that drifts through your mind as you are focused on something else. Give your unconscious mind time to work on it.

    I am sorry that things are changing in a way that is hard for your son, you, and your family. I think the hardest part of living with disability is that just when I think I’ve go the hang of it and I’m handling it gracefully – THUD! One of the balls that I’m juggling hits the ground with a resounding thud and I have to learn to deal with a new medical issue and a different future, both of which take more time than I ever want to give them.

    My daughter needs a wheelchair for all of her mobility needs, and always has. For children with mobility needs, wheelchairs and walkers are tools that free them to explore their world, which is very exciting for the child and the parent. Find a rehab center that will let your son try different types of equipment so that you can see what he likes, what he uses. My experience with wheelchairs vs. walkers is that wheelchairs are easier to use and give more freedom than walkers, but your son may have a different experience.

    Clearly you and your husband are excellent parents. I have faith that you will find your way through this rough patch, because that’s what you do.

    Take care and be well.

  4. Diane Engelstad says:

    Boy, I’m sure I’m not the only one who can relate to your dream, and your story. First of all, I just want to send love and strength parent-to-parent for your journey on this side trip you find yourself taking.

    I’ve long considered my son with CLS (now 21) my “easy child”, relatively speaking of course. Younger sibling DD appears to most people as a typical teenager, but is not (or perhaps “teenager times 10”). Paralysis/panic looms in my life, and I don’t expect the circumstances to step aside any time soon. I have found that one of my key allies is the therapeutic practice of “Mindfulness”. It seems to be everywhere these days, or maybe it’s just I’m drawn to anything resembling free “therapy”. It is simply an avenue to living in the moment, by paying attention non-judgementally, on purpose, in the present moment (despite difficult circumstances). I like the phrase “Full Catastrophe Living” associated with caregiver mindfulness. I am such a novice, but it is making a difference for me, and I highly recommend connecting with any (community-based) Mindfulness program you have access to, to help with parental stress.

  5. laurimedeiros says:

    The “acceptance of paralysis” is singularly situational. Never binding nor a pattern to be feared, IMHO. There are more times than-not I press forward. Then I am soooo proud of myself! I often reward myself with some sort of chocolate delight. The times I accept paralysis, I sigh and forgive myself. For sure, a scared stiff (or scared shit…) moment will come again. I’ll have another chance to press forward. Not because I found courage pre sa. Rather I push through despite having no courage and history tells me I can make it to the other side. I’m kind to myself when I accept paralysis, it’s only this moment-this time, and that day may not end with chocolate.
    Recently I pushed through a scared stiff situation and boy was I proud of myself! I didn’t get chocolate though… I opted for a Lobster roll form Kelly’s. Didn’t tell anyone. Just lavished myself with an ocean view and lobster. Boy was it good!

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