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!

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!

10 things we are doing this summer related to SPD (sort of)

1. The boy has started occupational therapy - AGAIN.
2. The girl is scheduled for an SPD evaluation (mostly in case she is a SEEKER). 
3. The boy is scheduled for his MRI (shhhh don't say anything to him yet). 
4. We are starting to do brushing again this summer. 
5. We will start the listening program again if we can connect our old OT w/our new OT.
6. The boy is scheduled to see an orthodontist next month regarding his mouth structure and how it might change. 
7. We may well end up paying out of pocket for speech therapy if our dang school district let's the proposed cuts to special education stand. 
8. We need to get a blood draw for the boy so we can figure out what vitamins and minerals he is missing and supplement. 
9. Now that the boy's ear tubes finally came out (years later), we are having him seen by the ENT next month about new potential low frequency hearing loss which may be a tiny hole in his ear. 
10. We keep on keeping on trying to have as much fun between all this medical stuff as we can, including trips that make the boy exercise and build muscles and get outside (such as Mt. Rainier)!

And you? 

Pieces of our puzzle

Random leg pain. Low muscle tone. Spinal cord minor malformation. 

These aren't things most of us think about when we think about our children. They certainly aren't things we could fathom to be potentially a good thing -- in a way. 

But when you have a child with issues that are not easily explained by a clear and present diagnosis, you live every day with a variety of symptoms and issues -- little puzzles individually that you hope someday just might come together. If you can't put the entire puzzle together, you hope to at least complete entire sections... with just that one right piece of information. 

And so today, while I was happy knowing that we have finally got occupational therapy sessions scheduled and insurance asking only for weekly $20 copays, I was also dealing with what I have always thought was an entirely different part of our puzzle only to find out that it just might fit together... a slight bone malformation that many people have to no ill effect and our son does have... could be leading to multiple other symptoms/issues including his low muscle tone (at least in his lower body) and his random leg pain complaints that seemed to go beyond growing pains but for which we have had no explanation. 

And so, in our world, getting an MRI and possibly needing an easy surgery could actually be a good thing -- one answer in our stable of myriad questions. As always in these matters, maybe not. The other constant is that just when I get a little excited about the prospect of helping my son and making things easier for him... I realize that this too is not going to be easy! An MRI requiring lower body anesthetic if I'm reading it right... needles did you say? Oh yes that should be easy - N*O*T! Ugh. And an overnight surgery now that the boy is old enough to understand all that might entail... even though he might think laser surgery sounds cool... I can hear the shouts of "I'M NOT GOING!" already. Anybody else think I can stay overnight with him at the hospital? 

And so in our world of different normal, there is a ying and a yang. A problem for every potential answer and we hope... .an answer for at least some of our issues. Will keep you posted.  

That time of year again

It is that time of year again. Summer is coming and with it all the outdoor activities such as swimming and bike riding and hikes and gardening. Although it is hard to believe that warm weather is coming due to a particularly cool and rainy May in the NW, it is coming indeed.

Most kids and families long for the sunny, warm days of practically living outside enjoying all that Summer has to offer. In some ways, of course, our family does too. Our daughter was ready to put up our pool weeks ago. She's just about always ready to ride a bike (as long as it includes training wheels). She has no problem getting dirty as knee-high mud stains on her pants from yesterday's school outing will attest.Our boy, is an entirely different story.

He has already told me that transitions such as this are difficult for him. The one super warm and sunny weekend we had last month, he squinted when he had to be outside and preferred to eat indoors alone while the rest of us revelled on being able to dine on our back porch. The light is too bright. The temperature change too sudden. And of course there are those bugs. Seemingly harmless to you and I, ants and flies seem deadly at times should they come too close to my boy.

We talked about planting his vegetable garden but haven't gotten past dispatching a few bachelor buttons and California poppy seeds in our front yard. We haven't tried hiking yet but usually the boy requests a pass due to bugs.

Biking is a problem for us as a family unit. Everyone is ready and willing although again the girl still needs to finally get rid of the training wheels. The boy shows just about zero interest. After his most recent occupational therapy evaluation, I think I know why. His balance is simply not all that good. Luckily, it isn't the can't stand up, always falling down kind of imbalance. But it is the just-enough-to-make-learning-new-skills-like-biking-supremely-scary-and-difficult kind for sure. A friend passed on information about a great program that just might get our boy on a bike with confidence although we haven't had a chance to get there yet...The Bike First Program

And then there is swimming! Sure enough just about every other friend of my son's loves either hanging out in our backyard pool or the neighborhood one and becoming part of the swim team is becoming all the rage. We are so not in that loop. Well meaning parents invite him to various swim activities but for the most part we pass. I've read multiple articles about what is to blame but clearly with our boy the biggest issues appears to be getting his face/ears/head wet. Underwater - I DON'T THINK SO - not if he can help it. We are stuck in the swimming lesson process. We've tried the various techniques to get him used to the idea, including practicing in the tub with hair washing and rinsing (still hates it), using goggles (helps but he still doesn't want anymore swimming lessons thank you very much), and allowing him to hold a towel to his eyes. They all help us to get his hair washed and he will go in a pool and maybe float around but once there's a good splash, he is often pretty much done. And so it goes.

We keep trying and keep searching for some answers that will move us forward one step at a time.  If your child cringes at the bright summery sunshine, prefers being indoors rather than out, fears bugs inordinately and/or just can't seem to find his way to bike or swim... he (or she) may have a sensory processing difficulty. I know we do! It has been suggested that I read "The Out of Sync Child Has Fun" and I'm sure I should. Looks as though that just might have some great suggestions on home activities that might help our less-than boys (and girls) of Summer!