Please help me build a resource for parents - sensory processing

[Uno-Mom]

Hi moms (& dads?)

I'd very much like your input. I have the opportunity to develop and share a workshop on sensory processing disorder. I'm going to create two versions: one for parents and one for direct-support professionals like mental health therapists, class aides and direct care workers in grouphomes.

I have my own ideas already: first an overview of typical sensory processing, how that can vary in our kids, how that can show up emotionally and behaviorally and simple strategies to bring security/comfort. Lots of story-telling and physical exercises to help folks experience a little of what it feels like to have SPD and related dx.

So, I'm asking:
(1) what would you like to see included in this sort of class for parents? Were there things you weren't told? What are the very best insights and techniques you'd want to share with other moms and dads?

(2) as parents, what would you most want included in a class for your child's support professionals? (About SPD in particular - but if you have other thoughts that would be great, too!)

TIA for letting me access your wise minds. I am so excited about this new project! I'm not under a deadline at this point so I'm going to take my time and do it well. :)

[mytwosons]

I only have a second, but for #2, I would definitely want them to know it is real. I still can't believe how many professionals (ST, para, etc.) who commented to me that SPD isn't real. There are professional folks out there who think parents and kids are using SPD as an excuse.

[crl]

I only have a second, but for #2, I would definitely want them to know it is real. I still can't believe how many professionals (ST, para, etc.) who commented to me that SPD isn't real. There are professional folks out there who think parents and kids are using SPD as an excuse.

Pretty much this. That you can't discipline sensory processing issues away. Also one of the most helpful things a professional ever told me was that everyone Has good days and bad days and for kids who aren't neurotypical that is more exaggerated. Just because ds can do something one day doesn't mean he can the next. And it doesn't automatically mean he is being defiant or not trying, it's just not a good day.

Catherine

[egoldber]

I still can't believe how many professionals (ST, para, etc.) who commented to me that SPD isn't real.

I think what many may mean by this is that it is not a medical diagnosis in the DSM. And for many children, especially younger, pre-elementary school age ones, the symptoms of SPD may go hand in hand with something else (autism, ADHD, anxiety, etc.) that they are still too young to receive as an actual, accurate diagnosis.

I think in many cases children are given a diagnosis of SPD and then parents stop looking for any other signs. While sensory issues remain a real concern for many children, even as they grow and develop, often these sensory issues are part of a larger spectrum of issues that children will face. And I think that often parents are not told this so sometimes these other things are missed or explained away as "sensory".

I think it is good for both parents and professionals to be aware that what may seem to be mainly sensory based concerns in young children may be part of something more if the symptoms and issues persist into early elementary.

[brittone2]

When I've attended courses taught by OTs on the topic, one thing that was helpful to me as a young professional was the realization that we all do things all day long to arouse/calm ourselves. Tapping your pen or your foot on the floor during a boring lecture keeps you awake. Ditto things like chewing gum for some people, etc. Drinking a fizzy, carbonated beverage during a college lecture or boring workshop helps keep us awake ;) It is all a continuum. Many of us engage in these behaviors, but we do it in more socially appropriate, less disruptive ways, or our need for that type of input is less extreme, kwim? I think many people don't think about how we all engage in some of this, but within more typical parameters. It might be fun to brainstorm some of those with a group and then talk about how to have an idea of what is typical and what goes beyond typical (for ex, disrupting others with your sensory needs...instead of tapping a foot on the floor, you may be kicking the person's chair in front of you or fidgeting in your seat so much that others around you can't focus on their work.)

Yes to the fact many people still don't believe it exists because it isn't in the DSM. ITA w/ egoldberg that it is complicated as often the SPD does go along with another diagnosis, and it gets hairy navigating that road at times as a professional (when do parents need to pursue additional diagnosis via neuropsych, dev. ped, etc.). I know several people here on the boards have cited the quackwatch guy and used that to say sensory issues aren't a "legit" diagnosis. sigh.

[mytwosons]

I think what many may mean by this is that it is not a medical diagnosis in the DSM.

Unfortunately, no. As an example, his ST once told me something along the lines of "of course rubbing calms him down, who doesn't enjoy a back rub or massage?" after telling me she didn't believe in SPD.

[Uno-Mom]

Unfortunately, no. As an example, his ST once told me something along the lines of "of course rubbing calms him down, who doesn't enjoy a back rub or massage?" after telling me she didn't believe in SPD.
Well DUH lady!! That proves the point, imo.

Thanks please keep the suggestions coming. That example was good to show the way I teach this stuff - to link moments and feelings in our own bodies to what these life experience non-stop. I've found that helps people understand. SPD isn't a totally different thing from being typical - it is a matter of degree and duration. We've all been dizzy, texture-averse, needed pressure, etc.

I feel I.need to start wih a good overview of the sensory systems from a more technical side - so people understand that vestibular is a sense, you know? People don't seem to know this info until they have to.

A big absolutely about the discipline aspect. That's one of my main purposes, since I come at all this from the behavior specialist perspective. (For those of you familiar with the terms, I practice PBS which includes some ABA principles but has different emphasis and somewhat different strategies.)

Ok, please please keep sharing! I welcome any btdt stories, if you're willing to share. Or you could pm me if you really have a heart to help this project but don't want to share on q public board. Thaaaaankyou!

[Gena]

These kinds of talks usually include an overview of each sense and what sensory-seeking and sensory-avoiding behavior for that sense looks like. At the end, there is often a statement that a kid can be both seeking and avoiding. But there usually isn't much description of what both seeking and avoiding behavior in the same child looks like or how the senses can play off each other.

My DS is dyspraxic, sensory seeking for proprioceptive and visual sensory avioding for tactile and auditory, and mixed for vestibular. (Which in real life means that he is an uncoordinated kid who loves to climb and crash, but won't hold on.) It took us a long time to figure out how these different aspects fit together.

[Uno-Mom]

These kinds of talks usually include an overview of each sense and what sensory-seeking and sensory-avoiding behavior for that sense looks like. At the end, there is often a statement that a kid can be both seeking and avoiding. But there usually isn't much description of what both seeking and avoiding behavior in the same child looks like or how the senses can play off each other.

My DS is dyspraxic, sensory seeking for proprioceptive and visual sensory avioding for tactile and auditory, and mixed for vestibular. (Which in real life means that he is an uncoordinated kid who loves to climb and crash, but won't hold on.) It took us a long time to figure out how these different aspects fit together.
Absolutely! I really want to make it subtle and reflect real life scenarios which would include so many permutations.

Now I'm thinking about creating behavior case studies of kids and asking small groups to problem-solve. Or, if people come with their own real life examples we could brainstorm together near the end of the class, applying the ideas I've shared earlier. I've done that when training paid staff and it's gone very well. People get passionate and determined to find answers! I had one class that was supposed to end at 5 and I couldn't get people to stop talking and go home!

That could also be a nice supportive experience for some parents, I hope, if the group environment feels safe for them to share.