Those Crazy Senses

Once upon a time I wrote a blog entry called “What Is Sensory Processing Disorder, Anyway?” In it I gave a brief overview of some of the things that can be involved in Sensory Processing Disorder. I tried to explain how SPD can affect the seven senses – yes, we have seven senses: touch, sight, smell, sound, taste but also our vestibular sense (sense of balance) and proprioceptive sense (the input from our joints). However, what many don’t realize, and what we ourselves have had to learn over the last two years since I wrote that article, is that SPD can even go much beyond just affecting the “seven senses”. It can be so much more than being sensitive to loud sounds, bright lights and certain touches. SPD can lead to many other neurological and physical issues.

Sensory Processing Disorder can lead to issues physical issues with low muscle tone, fine and gross motor delays. It can lead to neurological problems with motor planning and visual tracking issues, all of which can end up creating learning disabilities or challenges. It can cause emotional problems with anxiety, depression and behavior challenges. It’s often co-morbid with other disorders such as Autism, ADHD, Tourette Syndrome and others.

It has been almost three years since our son’s diagnosis with Sensory Processing Disorder. He has made huge strides, and we have especially noticed a huge improvement in his sensitivities between the ages of 7 and 8. We were told by other “SPD parents” that the 7th year seemed to be a turning point, as they often gain great strides in coping ability. That certainly was the case here.

Our son bathes like a champ now, though hair washing is still not his favorite thing to do, and we have to make sure his face and eyes are covered. He is also now learning to swim, and in the deep end, too! He is even starting to play in water sprinklers. He has no problem at all with public washrooms now, though he will still ask if the toilet is going to be loud. Overall he is coping much better with loud sounds, though sudden, unexpected loud sounds are still upsetting to him (this is a polite way of saying that they can leave him crying and shaking so badly that I have to carry him out of the area).

While introducing new foods is still a challenge, he is now eating all meats like a pro – we could almost forget there was a time that asking him to swallow meat would leave him crying and gagging and spitting it out in the garbage. While he still hates socks and rips them off at the first opportunity, he willing puts them on now, and we’ve finally gotten him wearing shoes other than his rain boots. He still doesn’t like his hands being sticky, and pretty well refuses to use glue, but, he is getting far better at coping when he comes in contact with sticky stuff.

So, while he still has some sensory “quirks”, he has made incredible strides; and we find the biggest improvement is that he now able to better vocalize his concerns, and ask us about the things he is worried about. This is a huge step because it allows us to better gauge how he is feeling, and thereby in turn we can prepare him better for what might be coming.

However.

As his issues with the main fives (okay, seven) senses have been improving, new issues have started rearing their head. When our son was first diagnosed, he was five years old, and truly not functioning like a “normal” child his age should in many areas – after all, getting dressed, bathing, washing his hair, eating, coping with public settings such as washrooms etc… were very difficult challenges for him. At that time, our goals were focused solely on those areas, and we just didn’t “see” the other challenges.

Over the past year, it has now become the other side of Sensory Processing Disorder that we are seeing, that side that few people have any understanding of. As original challenges diminished, we started realizing that our son was dealing with many other struggles. We had him reassessed, and the final results of three different tests from two different occupational therapists came in that our son was over the 90th percentile for sensory dysfunction – meaning, there isn’t much that he processes correctly when it comes to sensory input! And we were just now starting to see how it affects him in the other ways of life.

So… how does it affect him?

His OT suspects he may have some issues with Dyspraxia or Dysgraphia, as well. Dysgraphia and Dyspraxia are both very common among children with SPD, since at their very core, they are caused by poor sensory integration. Now, in our son’s case, he has excellent drawing skills, and his writing is fairly neat, however, in just about every other way, he is quite behind in his writing ability. Almost every single step of the process is difficult for him – from organizing his thoughts to the physical act of getting them on paper. He struggles with how much pressure to use, margins, word and letter spacing, and letter sizing. Even now he’s constantly mixing up capitals and lower case letters. He is extremely slow at writing, and copying text (from a board or a page) is challenging for him – so much so that it can cause meltdowns. This may not sound like such a big deal, but when you have a student entering grade 3 who is struggling to produce the written outcomes expected of a kindergarten or grade one student, it  becomes an issue.

Our son also has what is called joint hypermobility and which can be associated with SPD. This largely contributes to his physical issues with writing, as even holding a pencil to write requires physical compensations (ex. how he holds the pencil, how he sits, positions his arm etc…) which causes him to tire quickly when writing. But the challenges go beyond writing. He has troubles with typical fine motor skills such as tying shoes (it certainly grieves him that his 5 year old sister can tie her shoes, and he can’t), putting on gloves, sometimes doing up certain zippers, using a knife (he has only recently mastered buttering bread and he still cannot cut food at all), opening packages such as chips, candy etc…  He struggles with gross motor skills such as throwing and catching balls, how he walks and runs (you’ll notice he often keeps his arms held out to the sides for added stability), his posture (poor) and how he sits (slouches, or leans with support).

Our son also was diagnosed with Tourette Syndrome at the same time as his Sensory Processing Disorder, which is a common co-morbid neurological disorder. He has both vocal and motor tics that are always present, however, thankfully thus far, the tics that he has are ones that are subtle enough gestures that they aren’t normally noticeable to others outside of the family. Tics can be a form of a sensory seeking behavior, hence why there is often an overlap.

And so, these are the issues we are working on now. Our son continues to receive weekly “swim therapy” lessons, and also is now taking horseback riding lessons which are helping to improve his core strength, balance and posture. He is overseen by an occupational therapist, and we are on the waiting list for a physical therapist to help us with hand exercises to improve his fine motor abilities, but also help us work on strength training . One of the risks of joint hypermobility (especially in active children!) is the increased risk of injury due to unstable joints.

At home, thankfully, since we homeschool, I have great ability to work with him on his writing, and we use a handwriting program that was given to us by his OT. We also try to work with him every day on the simple, every day tasks that he struggles with, as they come up. The rule in this house is – you have to try to do it yourself, before you can have help. And even then, we try to show him, and then make him do it.

Our son has made great strides in his sensory disorder and we are very proud of him. But (blessedly) his “disorder” is an invisible one, so to outsiders, he looks and acts like a typical 8 year old boy – he’s a happy, smiling, laughing boy who runs, jumps, plays, pretends, loves Lego, Pokemon and super heroes (Batman is his favorite) and has light saber battles, just like any other boy. Few people really know what goes on behind the scenes at home with his sensory disorder, so it can be very hard for them to understand why I get so proud of him for writing two sentences, when others his age are writing a page. Or, for running through a sprinkler (he does not like the feel of cold water, and does not like being splashed), or for opening a bag of chips, or for getting his hands sticky and being able to wait calmly (albeit perhaps a bit anxiously) until I can wash them. And so that’s where we’re at now!

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