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!

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.  

Super Soaker Sunday!

You never know when your sensory child is going to have a "break through" or just do something unexpected considering their sensory nature. One of these interesting moments came for us this Sunday.

As the boy showed off his newest toy newly purchased from the Goodwill with his allowance, I cringed a bit at the enormous plastic gun looking thingie. I wouldn't say my first intuition was to be pleased. The boy alerted me to the fact however that it shoots water. Ahhhh thought I... the rest of us are going to be wet on a regular basis. Great.

But then since it was a warm and sunny day (one of our first this year), the kids and Dad headed outside with said Super Soaker filled with water and proceeded to squirt it into the yard for a start. I suggested (for my own fun) that it would be great if the kids ran through the yard and I shot them with water! What parent wouldn't enjoy this activity every once in awhile?! To my amazement, they agreed.

What happened next, I didn't expect. Both the girl and the somewhat water aversive sensory boy, ran back and forth with our goofy dog following behind, getting soaking wet with water -- to their delight. And even though the rule was to keep the water shooting "at the shirt zone," I missed occasionally but the boy said he even got it in the eye and it was just fine! Do it again!

Do I think this means his days of fighting getting his hair washed are over? No not realistically. Do I even think he'll spend more time in the pool this year once we get it up and the weather is warmer? Not really. And I doubt it will have a true impact on his willingness to put his head under water. But I can hope it helps, even just a little. And I can hold out hope of moving forward on this front ... one day (and super soaker) at a time!

Hurry up and wait...

Does anyone else get frustrated when you finally get a diagnosis or an evaluation with recommendations and then all falls silent. You finally get yourself up on that big horse ready to gallop, and everyone else seems to have put their horses away in the barn.  What is up with that? 

I know my boy needs more occupational therapy. The expert team of medical professionals that evaluated him know that he needs more occupational therapy. But still we wait. Waiting to hear if our insurance actually pays for the therapy or just the evaluation. Seems only logical that if you are willing to cover an evaluation to see what a child needs, that you would then cover the needed services that are indicated by the very professionals who are in your network. Wouldn't it? Or am I just daydreaming about what should be rather than what is in the world of medical insurance these days? 

I've read the books (all but one) recommended to me by the occupational therapist who did the evaluation but I can't get us in to see her for the work. They clearly tell you that a sensory diet is a good thing, but that you should work with a professional to get it just right for your child's particular needs. 

And so with Summer break upon us, we are waiting... for the genetics referral, for the occupational therapy answers and scheduling, for the ear, nose, throat and orthodontist visits (scheduled for August). I'd really like to move forward but I can't do it all alone.

In some bizarre way, it seems it would be easier if we did have anxiety issues since mental health parity is now the law of the land. Or maybe that is just another belief to which I'm silly enough to cling.  Being the parent of a kid with SPD is a lot of waiting and trying and waiting some more and trying where you can to move the entire process forward to get things done for your child. Maybe it is time for me to try communicating with the OT by email again... maybe we can come up with some sensory diet items to start sooner than the therapy itself. I'm not very good at waiting!