Getting To Know You by Alysia Butler

When Hartley asked if I would be a regular contributor on her Hartley’s Life with 3 Boys site, I was humbled and honored.  I started writing about my family’s journey with sensory processing disorder because of her, and I have learned so much from all the information she provides here. 

I sat up late at night trying to figure out the best way to introduce myself and my family to everyone.  I wanted to tell all her readers that I know what they are going through, that while the details of our adventures might be different, I understand the daily struggles that we all encounter.  I couldn’t figure out a good way to share all that.

I could start with “Hi, my name is Alysia and I have a son with sensory processing disorder”.  But that didn’t quite feel right.

I could tell you that I’m a stay at home mom with three boys, ages 8, 4 and 2.  My four year old was diagnosed with sensory processing disorder at age 2 ½, and with autism spectrum disorder in December 2009.  Still, that just didn’t tell the whole story.

But then it hit me.  Why not introduce myself through the Dunn Sensory Profile*?  You know, that multi-page form that so many of us have filled out for our schools, our occupational therapists and our early intervention coordinators. I have filled it out so many times I can almost do it in my sleep.  I figured I could pull out a couple of the questions and share my answers from two years ago with everyone. 

So at first I thought I’d do something like this:

·    Holds hands over ears to protect ears from sound? – Frequently
·    Is distracted or has trouble functioning if there is a lot of noise around? – Frequently
·    Twirls/spins self frequently throughout day? – Frequently
·    Avoids getting messy? – Frequently
·    Avoids going barefoot, especially in sand or grass? – Always
·    Touches people and objects to the point of irritating others? – Always
·    Gags easily with food textures or utensils in mouth? – Frequently
·    Avoids certain tastes and smells? – Always
·    Will only eat certain tastes? (list: crunchy, smooth, no chunks) – Always
·    Is overly affectionate with others? – Always
·    Has difficulty tolerating changes in plans and expectations? – Always

(*The Dunn Sensory Profile for caregivers is available through a licensed and trained Occupational Therapists as an evaluation tool for Sensory Processing Disorder.  My answers should not be used to diagnosis your child.)


But then I realized how much I hated filling out that profile.  It’s hard to see your kid displayed out like that, reduced to 100 questions and answers.  Plus, I felt like it didn’t tell the whole story.  Where were the questions about our family?  Didn’t they want to know about the impact this was having on all of us?

So for the purposes of “getting to know me” better, I’ve created a few questions of my own.  The Butler Family Sensory Profile, if you will:

·    Does your child hug you with such strength that you can’t breathe? – Always
·    Does your child require extra help and tools at night to help him sleep (i.e. weighted blankets, four comforters and you sleeping beside him?) – Always
·    Does your child have meltdowns and tantrums over things that don’t bother other children his age? – Frequently
·    Do you feel like others judge you as a parent because you can’t control your child? – Frequently
·    Do you feel alone and think that no one understands that you’ve tried everything but still can’t seem to make your child feel comfortable in their own skin? – Always

And…

·    Does your child have a remarkable way of viewing the world and sees things in life that you would have never seen? – Always
·    Do you feel like you would walk thousands of miles to do anything to help your child? – Always
·    Are you even more appreciative of the days when everything goes right? – Always
·    Are you constantly in awe of your amazing child and the things they are able to accomplish in life? – Always, always, always

Getting the picture?  So while my son was diagnosed with definite differences in all areas on the sensory profile, we realized that our family had definite differences too.  However, in the two and half years since his diagnosis, we’ve received excellent occupational therapy services both at home and at school.  We’ve changed our home life and his school environment to help him be more successful.  The progress he has made is remarkable.  Looking back on this profile now, I know our answers have changed.  That’s fantastic.  That’s making a huge difference in his life and in the lives of all of our family members.

So maybe I can now introduce myself this way:  “Hi.  I’m Alysia, and I have a son with sensory processing disorder.  And thanks to some amazing services and intervention – and a lot of work - we’re learning to help him live with it.”

Getting to know you,
Getting to know all about you.
Getting to like you,
Getting to hope you like me
.” - Getting to Know You from The King and I

8 comments:

Patty O. said...

I love this, Alysia! I have been thinking a lot about my own sensory issues and how they affect the family. It's interesting how all our sensory problems interact with one another here in my home.

Our therapist started the kids on Integrated Listening Systems and I have considered using it on myself. My OT said it would be fine. If I can find the time, I just might try it.

Heather said...

Nice to meet you Alysia! :)

All evaluations bug me- like they are only getting a teeny tiny picture of my children! Here I am in school for OT and learning how important these assessments are though, and I know they are, but it would be nice to have a more holistic one (it would take weeks to fill out, I'm sure lol)

spectrummymummy said...

Tomorrow we have another session of the sibling study, and I'm spending most of the morning filling out the wretched things. At least they balance it out by observing him, or I'd have to attach pages for all the stuff they don't ask about.

Thanks to your wonderful writing, I feel like I already do know you and your amazing family. :-)

Mint Milano cookie said...

This is my imaginary "hug" for you since you "love" hugs so much.. what people also need to know is that your son is blessed to have a great mom who would turn over every stone for ideas to help him. Since you don't (like to) pat yourself on the back - let a friend do it for you. You Rock and your boys are lucky to have you - all 4 of them :) xoxo your friend.

Brenda said...

Nice to meetchya! My son is a tackle hugger and bonk-kisser! Though also a noise-avoider and hand-mess-refuser. Hate those forms. Truly.

Alysia said...

Hi! Nice to meet all of you and thank you all for your nice comments!
It's so nice to know that I'm not the only one who gets out of sorts with those forms.

Looking forward to hearing more of your stories as time goes on here!
Alysia

Heather said...

Awesome post Alysia! Those questionnaires are always such a pain. They don't tell the whole story. I always want to add a "yes, but" category! I love your spin on it:) Glad Hartley picked you to be over here!!

Gina @ Special Happens said...

Hi Alysia. I *love* your questions in return. Likely, I think of all of them in one form or another each day. Look forward to more of your writing.