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 AnnaDeskins.com.

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! 

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

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.

Starting a sensory diet

If you have a kid with SPD, you probably have heard the term sensory diet. 

Amazingly enough, to those not in the know, it doesn't necessarily involve food -- at least not at the core of the thing.  What it does involve, varies by child and symptoms/issues and should be created with the help of a occupational therapist. 

Here are just a few of the entries on our daily sensory diet suggested by our OT: 

8 am - Wake up - Jump and crash on bed (who wouldn't want to do this one).

11 am & 2 pm - Heavy Work - Playground, swimming, pushing a shopping cart. 

8 pm - Bath - Deep pressure when assisting with toweling off, assisting with dressing - joint compressions. 

10 pm - Bedtime - Hotdog game (roll in blanket) or other deep pressure. 

We have sensory activities scheduled at 8, 8:30, 9, 10, 11, 12, 2, 4, 6, 7, 7:30, 8 and 10 pm! 

And every 2 hours we are supposed to be doing the Wilbarger Brushing Technique.

And 2x per day 1/2 hour of therapeutic listening. 

Today was my first day attempting this and I utterly failed. We kept our emotional cool by running errands and having adventures out and about but only after dinner did I remember the diet... so we managed to do 1/2 hour of listening, a few core strength exercises, some work with putty and he'll be headed into a bath, brushing and bedtime routine in just a little bit. Phew! 

I'm pooped and a bit overwhelmed and we didn't even do half what we were supposed to. I feel as though I should quit my job for the next few weeks to keep up with it... but of course that isn't an option... so Dad is learning what to do and next the other caregiver. 

And when school starts, everything will change. For anyone thinking of getting started on a sensory diet, I would advise getting your OT involved to make sure you have the "right" diet activities for your particular child's needs. I would also say that even though it looks a bit intimidating, every little bit helps and if it is gonna help my kids... I'm all for it! 

Happy Dieting!

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?

MRI Update/What is a Tethered Cord Anyway?

For those of you who are wondering, the MRI went fine. The boy wasn't sure about taking the medicine that would mean he wouldn't remember much or care about the procedure, but in the end he decided to go for it. He became very drowsy and seemingly content within 20 minutes. The procedure went just fine although it took quite awhile to get the anesthesia out of his system and the poor kid threw up several times before beginning to get back to normal. Not to worry though, he asked for his promised Lego toys and a cheeseburger before the night was through!

As to tethered cord, thanks to Children's Hospital Boston for this excellent description: 

As a human embryo develops, the spinal cord starts out as a flat plate of cells on the surface of the embryo. This plate later rolls into a tube and becomes surrounded by a tough covering called the dura, then muscle and bone, which form later in the process. During fetal development, the spine lengthens faster than the spinal cord, so that the lower end of the spinal cord ends up at the level of the second or third vertebrae in the lower back. 

If all goes smoothly, the cord grows so it can move up and down freely in a channel within the protective bones of the spine. But sometimes the spinal cord becomes attached, or tethered, to the surrounding tissue, usually at the base of the back. If this happens, the cord will become tight and stretched as the child grows, leading to symptoms of nerve damage, such as weakness or numbness in the legs, back pain, and trouble controlling the bladder or bowels.

If the syndrome is associated with myelodysplasia, it will usually be repaired at the same time as the neural tube defect. It can also be caused by a spinal lipoma (fatty deposit in and around the spinal cord), injury, tumor or (most commonly) by a fatty or tight filum (the filament of tissue that extends from the lower end of the spinal cord). In these cases, a child may not develop symptoms until they hit a growth spurt later in life. Surgery to release the spinal cord and allow it to move freely is the recommended treatment for a tethered cord that is causing symptoms. In fatty or tight filum cases, this surgery is relatively quick and straightforward.

And so now we wait. Apparently it should take about 3-5 business days (sometime next week maybe?) to get the MRI back and read by the pediatric neurosurgeon, Dr. Monica Wehby who is apparently great and OPB just did a story on her -- click on her name to read all about her!

The Lightening Thief gets an MRI

So this is it. MRI day. For those who think these things are easy with SPD, they would be well... wrong. 

Looking forward to it being over. We got the boy up early to make sure he ate something before the deadline of 7 am. Now he is moaning about hunger... expect that will last until we are done. He is getting close to the deadline for clear liquids as well so if I can manage to get these two kids dressed, we are going to the store for some Gatorade (one of his favorites) to tide him over until the 11 am deadline for that. 

I found a play date for the girl (thank goodness I don't have to deal with that as well). 

I've already contacted the radiology department since they mentioned something about an IV. My immediate thought, "Are you kidding me? There is no way you are gonna get that to happen unless the boy is O*U*T!" Luckily that is the plan. 

So most children would just breath in the sedation and fall asleep and wake when the procedure is over no worse for wear but maybe a bit groggy and/or queasy-ish... my boy remembers the way it felt from having his tubes put in and likens it to slow death! Great that makes things easy now doesn't it?! Asking your child to relive the feeling of a slow death... nice. 

So... I called radiology and they said there is an option of pre-sedation that brings on a pseudo amnesia (scary thought). Of course they mentioned it tastes nasty... how's that gonna work...  but they did say it is a small amount and they can squirt it in his mouth... so hopefully with a tight hold (if need be) we can make this work. 

I positioned it to the boy that this was a great thing. Take this quick tiny bit of medicine and you won't even remember the slow feeling of death! (Gosh... let's hope his desire to get this over with and get to eat can win against the forces of neurological messaging!) 

I guess it is appropos that we are watching The Lightening Thief... epic battle of wills! 

MRI Madness

We have a big week ahead of us with this MRI scheduled for Thursday morning. 

Hurdle #1:  When to tell the boy about it. 

Hurdle #2:  No food for 6 hours before hand (so effectively none that morning). 

Hurdle #3:  Getting him into the van to go and then out at the facility. 

Hurdle #4:  What am I willing to bribe him with in order to get this done? 

Hurdle #5:  Paying the bill once it's done. 

Hurdle #6:  Dealing with the overnight hospital stay (if needed) for laser surgery! 

I guess we truly have to take this one day, step at a time. Could be over on Thursday or not. 

And once this is taken care of, there's the orthodontia issue, possible tiny hole in his ear issue and how in the heck to get his blood drawn issue (in order to figure out what's missing from his diet since he's lost weight over the summer!) 

Ahhhh with SPD, the fun never ends!