Explaining SPD... How, When, Why And How Much To Tell Our Children About Sensory Processing Disorder (SPD) Pt 1

This is a broad subject and one that may not be easily summed up as every child and every parent is different.  However, I would like to share with you what I personally believe, what I have done, and advice from other parents on explaining SPD.

Over the past few months I have received several emails asking this very question...my answer is usually the same. Tell your kids about it as soon as possible, talk about it often, and explain it in as much detail as is age appropriate. I feel extremely passionate about this!!

Let me help you understand why I feel this way and advise you to as well.

Do we blame someone for having a head injury, for having schizophrenia, for having a broken bone, for going bald, for being born with Cerebral Palsy, for having seizures, etc.? No! Why not? Because it is not their fault! And neither is SPD!

Sensory Processing Disorder is a neurological, sub-cortical brain processing "deficit". The wiring is just not what it should be. The nervous system is not processing input in a "normal" and adaptive way. Is this the child's fault? The parents fault? Now Way! It is physiological not psychological!

Can it lead to psychological and behavioral problems? of course it can...but, we are here to educate, learn, and deal with this disorder before this gets too far.

Can we prevent it? Can we cure it? No, but we can surely help our children and the people in their world understand it and know how to help them! We can influence and impact it's effects through proper diagnosis and effective therapy!

Can we change the way a child's brain works to lessen the severity of SPD... Yes we can!

Can we make accommodations and modifications to a child's environment to lessen the symptoms...Yes we can!

Can we educate other people as well as our child on how best to deal with and cope with this disorder... Yes we can, and Yes we need to!

To Tell...Or Not To Tell

Me and my husband got into debates about what and how much to tell our daughter, and why, several times. His point was that he didn't want her to be "labeled" and live out that label as a kind of identity and self-fulfilling prophecy. This I can certainly understand and there are times when labels are just not appropriate because of the judgments and prejudice they cause.

This particularly came up for us when in 3rd grade, the teacher asked everyone to introduce themselves and tell the class something about them. Our daughter decided it was in her best interest to let everyone know right off the bat...

"My name is .... and I have 'sensory'" (as she used to call it).

This concerned her dad that she felt this was the one part of her identity she chose to share. He didn't like it. I, on the other hand felt proud that she took that opportunity to lay the cards on the table and not be ashamed of something that is difficult for her...she was letting everyone know what may be hard for her that year."

I say this...if a person understands themselves, they will then be open to accepting it and finding ways to help themselves cope with the cards they were dealt. Don't we all have crosses to bear?? I truly believe they need to know...it is not their fault, nor is it the parents fault. This is a message that can bring good mental health... it can only help, as far as I am concerned.

Should we present it in a way so as not to allow the child to have a crutch to lean on throughout life?... yes we should.

Do we want them to take some responsibility for their actions?... Yes we do!.

Can they always do this on their own?... No. Do they need our help?... Yes!

Of course it is the old nature vs. nurture debate, and some of us are concerned about how much nurture plays a role. It surely does play an important role...not for whether your child has SPD, But for how to help them help themselves!

Having SPD is the "nature part"...we know this! What to do about it is the "nurture part". How will we help our children? That is up to you and what you feel is best.

Coming up Next Part 2... The Consequences Of Not Talking About It

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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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