Sunday, October 2, 2011

Eyes & Ears

In my mind's eye, the appointment at the E.S.D (Educational Service District) was supposed to go something like this:

A little discomfort at having a hearing appointment but getting the hearing test portion done (as has happened so many times before) and then the ear molds made.

... and it did happen this way - until we got to the ear bud portion of the event.

Somehow my mind's eye blinked and missed this part. I had not actually acknowledged what this involved or how much the boy would react to such a procedure.

My mind's eye must have been relying on hope against all hope.

What really happened was to be expected but I guess I just didn't want to face up to it before hand or until it happened. My boy managed to, with great discomfort, place a tiny cotton ball in his own ear. This probably took at least 5 minutes of discussion, touching, protestation and the like.

Then it was the time to talk about the relatively "simple" procedure of putting some warm gooey like putty in his ear in order to make the mold. It was to stay in there for 1-2 minutes at most. This is when the sensory shit hit the proverbial fan.

I have blocked so much of the detail out of my mind that I cannot give you a blow by blow account. Needless to say, I attempted to pull out my arsenal of logic, promises, thoughts, empathy, hand-holding but alas none of it was to work that day. We left with out even one ear mold and no real plan.

The E.S.D. audiologist told of other children, including almost fully grown ones, having to be wrapped in blankets and held snugly in said blanket on the ground to make this happen. I, for one, don't want to go this way.

And so... we left: Mama grumpy, boy unhappy and quiet, girl stressed out as well. When we got to school, the boy was in a much better place and headed in on his own with his backpack and lunch in hand, even providing incentives to his sister to do the same. Unfortunately the lesser known side effects of the sensory defensive sibling syndrome became evident. For my girl... the stress of being there for the boy's earlier upset had led to her own stress becoming too much for her. She knew she had a substitute teacher for a second day and did not want to go.

Mom's Day was pretty much shot - and I hadn't even really seen it coming. It amazes me at times just how easy it can be to not face the facts of what your child's reality may cause.

A Mommy Blogger Interview with ME!

Thanks to Anna Deskins for interviewing me for her own "Mama Blog".  Check it out over at

Anna has compiled and posted a bunch of interviews with Mommy Bloggers over on her site. Glad to have been included.

She has a great site about the importance of reading to our children! 

Sunday, September 4, 2011

Bare foot boy - who can that be?

If your child isn't a sensory child, you are probably going to find this next statement a bit odd. Even if your child is sensory seeking, it might seem a bit weird. 

An amazing thing has happened in our family. We regularly see our son's feet! 
These are NOT my son's feet!

Yes I realize no matter who you are, that is a weird thing to say but around here it is almost a miracle. 

Every year for years, we have as a family gone for a week to the beach at the Oregon Coast. 

Pretty much from the beginning, once she could walk, we couldn't keep our daughter out of the surf, the sand or anything else for that matter and she was regularly losing her shoes. 

The boy, on the other hand has for year's worn his shoes (often with socks) from the moment he gets out of bed to the time he crawls back under the covers. We would physically have to remove his shoes almost every day. 

The summer beach week was much the same. He would NOT take off his shoes, let alone wear flip flops or sandals or get in the ocean. He would NOT walk on sand barefoot. 

Then a couple of years ago, a miraculous thing happened. My best friend who often hangs out with the children, bought them water shoes. Suddenly, without warning, the boy went into the ocean to play with the dogs and his sister and us -- and we could barely get him to come back out! We were stunned! 

Then this year, as we were playing at Cannon Beach, the boy headed off (as he so often does) to play in the Dunes and I just happened to notice (he was SHOELESS!) Off he marched unabashed and fearless into the dunes, across the hot sand no less, bare foot! We parents gave each other an amazed and happy look! Could it be, bare foot on the beach - our boy?  Phenomenal. 

And the other day, back from vacation, as I was doing something around the house in the middle of the day, I saw them agai -- the boy's bare feet were walking across the floor for all to see. One thing about this sensory thing... it can change, it can mellow. And when it does, it is a blessing. The boy can now enjoy water play, the ocean, sand and bare feet. 

He has not, however, yet conquered putting his head under water. That my friends will have to wait for another day or summer. We are crossing our fingers and hoping some private swim lessons might pave the way for that day! 

Sensory summer is coming to an end and school is about to begin. What amazing things has your sensory-aversive child conquered? I would love to hear about your child's success stories! 
Mama Zuzi

Saturday, January 15, 2011

Hospitals are no place for a sensory defensive, Part I

I know it has been awhile since I've posted on this blog, even though in many ways it is the most important of my many blogs.

I have wanted to for awhile but struggled with the enormity of feelings and such related to this particular post.

As many of you may know if you read this blog, my 10-year old son had tethered cord surgery in early November. The surgery itself went well. He is apparently getting stronger in his toes and lower limbs every day. He is likely better balanced although right now we are foregoing occupational therapy, due to our family being less than fully employed, so we don't have the regular check-ins on this to guide us.

What didn't go well was pretty much the entire experience once we got down to business to have the surgery. Even though I am an astute mother who knows the many triggers for my sensory-aversive child, I didn't even fathom the depth of experiences involved in this process that would be entirely disturbing for my son.

First he was supposed to take some medicine (which he had done once before for an MRI) to take the edge off and make him not so much care about the procedure. Worked like a charm for the MRI, but this time the taste (which he now had a horrible memory of from before) was so offensive that he ... just... could... not ... take... it. I could see his internal struggle. He is old enough to know it would help but he just couldn't make his body drink the liquid. He cried. He tried. He spit a bunch out. We tried again. Cried more. Finally drank what was in the cup. So at the outset he was already deeply upset.

Only later did our anesthesiologist (who by the way never called us the night before the procedure as he was supposed to do which caused other problems) blithely informed us that since he didn't take the ENTIRE cup of medicine, it really wouldn't be able to help him at all. He remained stressed, nervous, shaky and very aware of his surroundings all the way into the operating room. I can only imagine how upset he was until the anesthesia kicked in.

Why didn't the nurse or anyone else tell us during the entire medicine ordeal the same piece of information. If it was useless unless we had a full dose, why did they not either fill up the cup to ensure it would work or let us know it was  not worth the effort and just move forward?

And that was just the beginning.