RA – Stairs, Sensory Processing Disorder, Flu, and Trampolines… What?

What could all of those things possibly have in common?  Well, it’s a story, as usual.  Sit back and enjoy my crazy mind.

At Christmas, we went to visit my brother and his family.  They have a giant trampoline in their yard, and every time I go there, I want to try it.  I never had though, as I was quite terrified and felt I didn’t have the ability to even walk on it, let alone jump. I probably should mention I haven’t jumped in 15+ years.  My husband was there though, and I REALLY wanted to try it, so I climbed the little ladder and got up there (with my hubby’s help).

I made my husband stand all the way to the side, as I didn’t want any movement from him to make me fall.  Just walking on it was very challenging and exhausting.  My balance wasn’t very good. My son, niece, and nephews wanted to be up there with me, which wasn’t helping.  We didn’t let them get up.  I carefully walked a few laps and got off.  It was hard to not fall, but I had a goal to bounce, even if my feet never got airborne.

A few hours later, I went out again with my husband.  I walked around slightly more successfully, then got off.  Out I went again later, managed to walk more quickly and with more stability.  I was getting “trampoline legs.”  Out again I went later, and I jumped a little.  My feet never left the trampoline, but I jumped.  And you know what?  I expected it to hurt, and it didn’t.  It actually felt REALLY good.  A few more trips out, and I was jumping…. REALLY jumping.  Not high, not fancy, but my feet did leave the trampoline, and it felt REALLY REALLY good.  I was shocked, and now I want a trampoline!!! Wow!  They’re expensive!

Ok, stay with me now.  My son (now 10) has always had a lot of sensitivities.  He is an unbelievably picky eater (so much so that he was under the 1st percentile for weight for some of his infant/toddler years). He struggles with sounds, especially kids talking in class, which makes it hard for him to work.  The slightest bump can make him burst into tears, insisting that something rather minor is very painful.  At 10, this looks rather shocking.  These things (and others), he has always had, in a relatively minor way, but then at the end of January, he got Influenza A.  He had a few complications, such as Enthasitis (which in his case was an inflammation in his heel, which made his calves so tight, it forced his feet into a point, and he couldn’t walk for 5 days).  After missing 9 days of school, he went back with just a lingering ear infection. Apparently they don’t give 10 year olds antibiotics for ear infections any more…. well, until the ear drum ruptures.  He had to endure the pain of that, then he got an antibiotic.  The antibiotic didn’t work, so they started him on a stronger one.  After a few days of the second one (and after being back at school for a week and a half), his sensitivites got way out of control.  I had never seen him like this.  He was throwing up at school because the stress of being near other people with their sounds and movements was more than he could take.  He wouldn’t pet or sleep with the dog, as was his routine.  He didn’t want to go to Cub Scouts or other weekly activities he typically BEGS for.  He didn’t want to leave the house at all.  As a parent, it was frightening, and we got calls from the school at least 3 days a week, if we could get him there at all.  He missed 3 1/2 days due to his extreme anxiety.  We went back to the doctor to ask about ending this new antibiotic early.  His ear was better, but not clear.  We left the decision up to my son, who decided to stay on it the whole 10 days due to not wanting the extreme pain of another rupture.  It was awful.

I have suspected that my son has had a mild case of Sensory Processing Disorder his whole life.  It seemed rather manageable though, and I had some understanding of it, as many of the students I work with (who have autism) also have this challenge.  In first grade, he used sound-blocking headphones for a little while.  In second grade, he was allowed to chew gum.  In their grade (strict teacher, quiet room), he didn’t need anything.  Up until the flu, he did well this year.  Then all of this.

We decided that given how extreme it was, that he needed to be evaluated.  I had some friends who had children with it, so they recommended some books and an occupational therapist.  He is currently on a waiting list for an evaluation.  In the meantime, I have been scouring all of these books looking for help.

I am far from being an expert, but I am learning that there are different types.  There are oversensitive, undersensitive, mixed, and sensory seeking. My son seems to be mixed with heavier oversensitive issues.  There are also different types…. auditory, visual, tactile, smell, proprioceptive, emotional, etc…  As I have been reading, I have been enlightened by my own sensory challenges!!

It’s been interesting, as I didn’t have these issues as a child, but I do have them now.  I think they are being caused by my RA.  What I think I am learning about this is that when you don’t use all of these senses, you start to lose the ability to tolerate certain stimuli.  For example, I never used to get dizzy on amusement park rides, but now, even minor rides can leave me with nausea.  I watch my feet whenever I’m walking on a bumpy or unfamiliar surface, as I don’t feel like I have reflexes to catch myself if I fall. For 6 years, I was unable to walk down the stairs alternating feet.  I had to go sideways, and 1 foot at a time.  Now, even though my RA is under really good control, sometimes I get to the top of the stairs and “forget” how to run down them.  I will still got one step at a time about 40% of the time.  Some days, something kicks in, and I am able to run down without issue.  I am defensive when people, sometimes even my husband, get too close to me.  I don’t have a motor memory of what it feels like to jump.  When I try and land on the hard floor, I didn’t bend my ankles to land in a cushioned fashion.  I don’t “remember” how to do that (the trampoline kindly seemed to cushion for me). I can think of many other examples of these types of things.

I think all of these things are hard because I don’t use skills that maintain them. For years, I wouldn’t have dreamed of trying to jump.  When I finally processed how to do it, I did it and it felt so so so good!  I watch my feet because I haven’t run or moved in ways that tax my ability to catch myself, so my reflexes in those situations are slower.  I didn’t like to be touched because it was painful.  That has turned into flat out not liking to be touched, even though it’s not painful anymore.

So, my questions for those of you out there are, have you experiences these things?  Have you thought through why it is so?  Does it impact your relationships?  I am in the midst of a great book, The Out of Sync Child.  It describes these things wonderfully.  I think I might need to make a goal for myself this summer to get some new (or old, as the case may be) sensory experiences.  I want to know if it helps.


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