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!

Sensory Processing Disorder - a family affair?

Each and every day I see evidence of my boy's SPD. Whether it is having to wear his seamless socks or no socks at all, or having to be carried quickly through the doors of the store on the off-chance the alarms will go off, he clearly is sensory defensive. 

When I think about our family, I think of my boy as the one with sensory issues. He is the one with a diagnosis - it's true. However, lately I'm beginning to see each of our own sensory behaviors. Dad doesn't like the textures of things like guacamole or refried beans. I seek comfort in rubbing my fingers together in a repetitive way and get easily overwhelmed by loud whining and crying (who doesn't?)... but could we all have an actual diagnosable case of SPD or just little issues? 

As I sit typing this, I am looking forward to the day I can finally seriously have my daughter evaluated for what I think just might also be SPD. It looks so different in her that I've often assumed it just couldn't be. The boy avoids things and she seeks them out regularly -- sensory seeking anyone? And now I realize things like her shyness in the beginning of things and her extreme concern about what others might think of her, could all be related as well. She melts down and ends up in huge tantrums of enormous proportion... emotionally overwhelmed, unable to self-sooth. Ugh... could I really have two SPD children to parent? 

I am beginning to think I might. Stay tuned. 

A Sensory Defensive's NEVER To Do List

In a perfect world there would be lots of things a sensory defensive child just wouldn't have to do. In the case of mine, the list would look something like this: 

To "NEVER" Do List:

• Get shots
• Go to dentist or floss
• Have nails trimmed
• Get face wet
• Hear a fire drill
• Enter bathroom or other small enclosed space with smoke detectors
• Experience thunder storms
• Have a small person yell in ear
• Have bugs get anywhere near

 add to the list, sleep all night with olive oil in hair!

A sensory defensive child should never ever have to deal with lice! It's just not right. Now of course no one should have to deal with lice. They are a teeny tiny big fat pain in the head... but more than any other... a child who experiences life in fight or flight mode, to whom bugs can be terrifying, who fights against getting his head and face wet regularly when bathing... this child should NOT have to be told there are tiny little bugs on his head. He should not then have to sit still while someone painstakingly pulls his hair while picking out nits and such and he really should not have to deal with seemingly never ending treatments of olive oil in his hair and multiple shampoos and rinses. 

When all this came down for us recently, I simply assumed there was no information out there for how to deal with lice with your child with SPD... amazingly it turns out I was wrong in that assumption. I should have known that Lindsey Biel, OTR/L, and Nancy Peske, authors of Raising a Sensory Smart Child, would have suggestions! What would we SPD parents do without them? If you are interested, look HERE in this handy About.com article on this very subject. 

I have to say this however... while I'm sure this is extremely helpful advice for parents of SPD kids who have major issues with smell, that isn't really our problem. None of these things really were helpful in our case. Every time we've done this, what helped was explaining that without the treatment, he'd have to keep dealing with the possibility of bugs on his head. It was also helpful to let him play computer games while we nit-picked and blow dried. Distraction = good! Otherwise, a towel (changed often to make sure it's dry) for his face and ears while shampooing and rinsing helps a bit. Frankly the olive oil... won't ever be good for him... at least not without more occupational therapy maybe... he cries, he protests, he struggles and ultimately we do it and he falls asleep. Once it's dry, no big deal. 

Here's hoping we never, ever have to do this again... it definitely gets added to the TO "NEVER" DO list!

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!

Dissing Disabilities

I've only just started this blog and I'm already feeling an overwhelming need to change the title in some way. I love the play on words with "Sense and Sensibility" but I keep cringing at the DisABILITIES. I thought the emphasis on abilities might be enough but now I'm not so sure.

Earlier this week, I was reading tweets from a mother contact of mine in New York, the lovely Marianne Russo of The Coffee Klatch, an interactive forum on Blog Talk Radio and Twitter. It is a great resource, bringing you expert guests including award winning authors, doctors, psychologists, advocates and representatives from the world's most respected children's organizations. We feature daily topics for all disabilities both physical and emotional. I mention Marianne because she recently RAVED about a book called "Neurodiversity," by Thomas Armstrong, PhD.From the Amazon.com website description:

"...Armstrong (7 Kinds of Smart), an educational consultant turned author, argues that there is no normal brain or normal mental capability and that we are making a serious mistake in assuming that the kinds of differences we see in people with conditions like autism or dyslexia involve only deficits. People with these conditions also have strengths, he emphasizes, and by focusing on these, rather than on the labels, we can find the modes of learning and living that can help them thrive..."

We, as a society, label people who don't fit our "norm" as disabled. They are to be more politically-correct, differently abled. I don't consider my son to be disabled although his sensory processing issues cause him difficulties at times and keep him from readily doing things other casually do.

And so... I am thinking already about changing the name of this blog... And even though I have probably 1 or 2 readers (maybe), I'm already asking for some input. I'd love to keep the idea or pun or play on words if you will... Sensory and Sensing Differing Abilities maybe? Too wordy? Something else that just isn't coming to me?

I want to honor the differences that my son experiences in life the way he lives it. I want to honor all the differences that come with senses that process the world in a different way, the challenges that come with that and other differing abilities whatever they may turn out to be.

Thoughts and ideas so completely welcome!

Sorting out Sensory Processing Disorder

From very early on, it was obvious that our first born was reticent about ... well... many things. To be more accurate, he is uncomfortable with many textures, the feeling of certain substances and doing some activities. 

Unlike our 2nd born, who forms mudpies with her hands, jumps into puddles and leaves the remains of creative projects and other messes trailing behind her wherever she goes, our boy generally prefers to stay clean although he also avoids getting his hair washed. 

The girl loves to swim. He would rather do something on dry land. She picks up worms and snails with her bare hands, he heads the other direction and is fearful of bees, bugs, even ants.

 

Her hug is a force of nature that can knock you down and more often than not inflicts pain, he has low muscle tone and feels pain far more acutely than the rest of us. 

The one firm definitive diagnosis we know is Sensory Processing Disorder and every day we are learning just what that means and just how we can help. 

I hope if you are interested, you will learn a thing or two that is helpful here. I hope I can enlighten someone to information that just might help their child or even themselves. But mostly, I'm just a Mama living every day figuring out how to best support my child (or any child) with their own unique sensory issues and abilities. 

Welcome to our journey.