Can you hear me? The evidence is likely contradictory.

I have not been a very good sensory mama blogger of late. Been too busy with the regular machinations of life with a sensory kid. If you've got such a child, you may recognize a few of these... battling over meals, trying to get them to wear clothes they've said are fine only to find out they are not wearing them... and so much more. 

I believe I left off on the hearing aid issue with a young boy unable to handle the thought of a gooey substance in his ear for even a few seconds in order to make a hearing aid mold. That was back in September. 

Fast forward to January and we have had numerous regular visits between my boy and an ESD (Educational Service District) worker to help him understand his hearing loss, hearing aids, possible benefits of wearing them, etc. He finally has a temporary set but struggles to adjust to the feedback that happens when he doesn't push them in far enough. Ah the yin and yang of sensory issues... not in far enough = fuzzy feedback noises (no good) vs. in far enough = discomfort of a tiny rubber foreign object inside ones very sensitive ear canal (no good). Fun. 

We have gotten to the point that the boy knows he must wear them at least a half a day at school weekly in order to get to hang out once a week at an after school program he enjoys. I didn't want to pit those against one another but figured it was only fair that he try to compromise the tiniest bit. 

The thing at this point is that the boy has worn them a couple of times for a few hours at a time and while he doesn't think they help much, he can do it. To be honest, I don't want to currently fight for more than the one day a week because I know how ugly it can get. Maybe that makes me an ineffectual parent or maybe one who understand her boy's sensory issues. I'm not quite clear on this these days. He will no doubt have to be seen again at the ESD soon enough and I am sincerely hoping they can test his hearing with and without the hearing aids to show if it is making a difference at all for our boy. At least then we'd be armed with some "evidence". 

When it comes to sensory issues, however, evidence can always be contradicted. 

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.

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.

Words for the week

When a parent has a child with special needs such as sensory processing disorder (and other issues), it is an on-going opportunity to learn all sorts of new words and terms. This week alone, we've discovered or clarified the following terms: 

Crowding of teeth  - is recognized as an affliction that stems in part from a modern western lifestyle. It is unknown whether it is due to the consistency of western diets, a result of mouthbreathing; or the result of an early loss of deciduous (milk, baby) teeth due to decay. 

Otolaryngology - (pronounced oh/toe/lair/in/goll/oh/jee) is the oldest medical specialty in the United States. Otolaryngologists are physicians trained in the medical and surgical management and treatment of patients with diseases and disorders of the ear, nose, throat (ENT), and related structures of the head and neck. They are commonly referred to as ENT physicians. 

Tympanic membrane - or eardrum, is a thin membrane that separates the external ear from the middle ear. Its function is to transmit sound from the air to the ossicles inside the middle ear. The malleus bone bridges the gap between the eardrum and the other ossicles. Rupture or perforation of the eardrum can lead to conductive hearing loss. 

Tympanoplasty - is the surgical operation performed for the reconstruction of the eardrum (tympanic membrane) and/or the small bones of the middle ear (ossicles). The term 'myringoplasty' refers to repair of the tympanic membrane alone^[1]. There are several options for treating a perforated eardrum. If the perforation is from recent trauma, many ear, nose and throat specialists will elect to watch and see if it heals on its own. After that, surgery may be considered.

 Should be interesting to see what words we learn next week! 

Appointments, appointments, appointments

I usually attempt to spread out my boy's medical appointments because I want him to feel like a regular kid and not get too frustrated but sometimes things just don't work out that way. 

No doubt the boy is still emotionally recovering from the MRI last week -- transitioning if you will. Unfortunately this week is fairly well packed with appointments AND his best friend is out of the country for 2 weeks - not a great mix. 

Today we have the ENT (ear, nose and throat) appointment. Looking at new potential hearing loss which could have been due to a cold or could be a small hole in his ear that may or may not heal on it's own (More possible procedures! Oh goody. *note the sarcasm here.).

After that we go to the orthodontist for an estimate of how the  oral structure might develop with time. Then comes decisions regarding more speech therapy or some other directions (such as braces or another way to change the palate structure)... add in more maternal sarcasm here.

Tomorrow is the more fun appointment -- OT (occupational therapy for those who don't know that one). 

Wednesday back to dread. Both kids have appointments to have their teeth cleaned and "looked at." Here's hoping that goes alright. I almost said WELL but I think that is too much to ask for.

After that, we are done for the week. Give the boy a couple of play dates and days to begin to recover. The boy is already complaining about being bored other than on days with play dates and this is NOT going to help any.

What must it be like to go to the doctor and the dentist just once or twice a year? Interesting concept. While we are so very lucky that we don't have long stints in the hospital or emergency surgeries like some kids no doubt do, the idea of one or two regular checkups and nothing more in a year... to an SPD (and something else) parents sounds like music to my ears -- an impossible dream. How often do you take your kiddo/s to the doctors?