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Parent/Caregiver Awareness

Parent/Caregiver Awareness

The sound of cars going by, the bright lights of a store, the feel of a new shirt, a crunchy new food.  And the list goes on and on.

I am sure that those reading these random things will already know them as potential triggers to the sensory system of a person they know.  Sometimes that person is their child, other times it is a family member. I wanted to write about Sensory Processing Disorder "SPD" as it is something that all those on the spectrum will show signs of.  Sometimes severely other times mildly

 What is a trigger for one person is not necessarily the same for the next.  This is what makes the disorder of SPD or Sensory Processing Disorder so unique, so widespread, and also so under recognized.

It is Unique in that each person can be affected differently by a shared trigger or may have ones that are unique to them.   For example, two children may hate the sound of loud whistling but one will hide from it and one may cry.   Or one child may hate the sound of whistling and another one will hate the sound of paper being crunched up and will just sit and enjoy the sound of the song being whistled.  They both are showing signs of Sensory issues but quite differently…Uniquely

It is Widespread in that every person diagnosed as on the Autism Spectrum will be affected by SPD.  And since the last information has Autism rates at 1 in 80 children being diagnosed, then SPD is quite widespread.  In addition, there are children, and adults who have SPD and are NOT on the spectrum.  So if you factor in those numbers, SPD is even more widespread.

And sadly, it is still Under recognized.  You can almost ask yourself,  “How can this be?”  I agree, given the numbers of those on the spectrum, it truly does not make sense.  But the reality is, when you say your child/family member has SPD, most times you will be greeted with a bit of a blank stare.  At best you will get some time to explain the disorder and at worst you will not.  Some people might simply mentally categorize this disorder as being “out there.”  So even though we have this awareness month, and the numbers support its merit…SPD and its affects are under recognized.

One of the main reasons I wrote my book about Elizabeth (My daughter who has SPD and global dyspraxia), was to help raise awareness for her disorders.  To help others learn about it.  It is so hard to be that the mom who is trying to explain their child to a new teacher or therapist, to have to teach the teacher and to educate the therapist on just how your child “works” Raising awareness it the easiest way we can all help each other on this journey we are all on together.

SPD can affect each and every part of the day.  It is quite hard to manage SPD as life does not go as planned.  A loud horn may honk unexpectedly or a baby may start crying.  These simple things, to us are not an issue, but to those with SPD they may trigger the beginning of a meltdown. And a meltdown in public can tough to handle.  So by raising awareness for this disorder, we can help educate those who don’t know about these disorders.  Such as the check out lady at the grocery store or the librarian.  Education and the resulting understanding will help during meltdowns.  If nothing more than to decrease the amount of staring and perhaps increase the ability to offer support.

One thing that also comes to mind, for me, this month is that it would so nice to mentally add “Parent/Caregiver Awareness” to the title of this month.  Because being a parent or a caregiver to a special needs child requires so much.  It requires that you have certain qualities:  Patience, love, understanding, strength and belief in the child.

 And energy.  Energy to answer that question again. Energy to plan the next therapy.  Energy to address the school system. Energy to simply put in a day.  Just know when you look at the mom who appears tired or worn out, that your smile of understanding is huge.  That your offer to help is appreciated and that your lack of judgement is priceless.

Autism is a small word that represents huge spectrum of individual needs and issues but no matter the uniqueness one thing is shared and that is the more you know about Autism and how it affects the individual child, such as their SPD, the more you can help them grow and achieve goals in life. 

And isn’t that the goal of it all?




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