Explaining SPD... How, When, Why And How Much To Tell Our Children About Sensory Processing Disorder (SPD) Pt 3

Your first paragraph ...

(Continued from Part 2)

SPD Explained

Even though I "knew" my daughter had SPD from early on, we didn't get her officially diagnosed until age 7. Up until that point, I spent most of the time making accommodations and modifying her environment as preventative measures, and a LOT of time validating her sensitivities, when no one else understood or was willing to. This was enough, until "trouble" outside the home began; because at 7 years old, her world was quickly opening up and expectations of maturity were increasing.

She started having severe anxiety at school, during new experiences, in noisy environments, playing with others on the playground, in social settings, at friend's houses, at family gatherings, etc. The poor kid had bottled so much up over the 7 years, until I finally understood she needed to know more!

My mistake... I thought I could just do it all for her and protect her from all that was uncomfortable. I thought I could keep the pain away, whatever the cost! I thought I could make it all better because I knew and understood her diagnosis! Geesh, was I wrong!

She didn't need me to control her and everything around her...she needed more control, more self-awareness, more maturity, and more understanding of how her SPD was playing out and affecting her everyday experiences. She needed to know why and how and take ownership of some of her feelings.

What Changed?... Why Now?

Because we admitted we needed help! Finally, an evaluation, a diagnosis, a treatment plan! So, once a week we found ourselves at the OT clinic working on just those things that caused anxiety and were difficult for her. Now THERE'S a new concept...admit and deal head on with those things that made her "less than perfect". No more protecting her like an endangered species, like a porcelain doll that would break, like my precious child whom I couldn't bear to see struggle or in pain. It was time to let go of MY fears!

I truly believe it is just that...our OWN issues that cause us to keep quiet when we should talk. We're scared, we're afraid...what will I DO to them if I tell them what's "wrong" with them?? We all want what is best for our children...we want them to feel loved, have high self-esteem, be safe, happy, successful and confident. But, I believe OUR FEARS of exposing them to the truth about their SPD will actually rob them of all of these things in the long run!

Once I realized this, I could finally admit to myself and talk to her about her "imperfections" (I never called them that), her reality, the cards she was dealt. AND, because of who I am, what I know and believe, and what I wanted for her, I knew I had to do it in a non-chalant and most positive way possible. And so we started.

She asked...

"Why do I have to go to Miss Leigh (the OT)?"

"Why do I have to get my skin brushed?"

"Why do I have to try foods I don't like?"

"Why do I have to have 'sensory' (as she used to call it)?"

"Will it ever go away?"

"Did you make me this way?"

And so much more.

I answered every question she had about it. I gave her all the age-appropriate information she needed; to understand it herself, to feel confident in explaining it to her friends and/or teachers, to not be ashamed of who she was.

After I answered some of these questions and gave her a general overview of sensory processing, we continue to talk often about how her sensory defensiveness affects her. I would say, "you know how you did/said... THAT'S sensory defensiveness, THAT'S anxiety, THAT's SPD, etc. And I know you don't like feeling that way, so me, daddy, Miss Leigh (OT), and Pat (psychologist) are all going to help make this better for you!

Continue to Part 4 "Other Answers Included Things Like"...

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Related Resources and Further Reading

Sensory Processing Disorder Checklist - comprehensive SPD Checklist; signs and symptoms of tactile, auditory, olfactory and oral defensiveness, as well as proprioceptive and vestibular dysfunction.

Coping With Emotions In SPD - A reader asks about coping with emotions in SPD

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