Wednesday, December 17, 2014

Sensory Integration Dysfunction...Wait, What?!

What is this you might ask?  This is our newest journey with our beautiful Lia.  While the doctors haven't necessarily been wrong about the other diagnoses...this has just been added to the list. Some of you may think, no way, no child can keep having so many different diagnoses.

Well, she does.

Our brain is such a complex system, so many functions going on at once, some brains are just wired a little different.

Now, I do believe a lot of Lia's diagnoses are related.  And this last one is the one that excites me the most.

You may think I'm crazy for saying this, but when you live with your child day in and day out and she is truly the hardest part of your day, every day, draining almost every ounce of energy from you and you don't know why...as a mother I HAVE TO FIGURE THIS OUT.  I NEED an answer almost as much as I need air to breath.  This may seem dramatic to you, but when the world (other than her teachers and therapists) say things like, "she's such a joy, she's such a great kid!  We just love, Lia." And while I love my child, I think to myself how come this is so hard for me to see? It makes you want to find out if you're crazy or not.

It turns out I'm only a little crazy ;)

I want to put it in some perspective for you:  I want you to think of each of your children or your child, now do they behave better for you or do they behave better for others?  I am guessing the latter. That's pretty typical.  I need you to understand that I have three other children, so I do have some perspective here.  I know that kids will be kids and that most children tell lies and that kids are never going to be totally obedient, but Lia is not your typical kid.  As her play therapist says, Lia is the master manipulator, everything she does is to an extreme.  It's a gift.  She is gifted.

This is both good and bad.

Good because her brain is like a sponge.  She has an IQ of over an 130.  She is gifted in art, language, math, and vocabulary.

What could be bad about this you might ask?  Having a smart kid is every parents dream, right?

Of course, but gifted doesn't mean the same thing as being smart.

Many gifted kids flunk out of school.  Many gifted kids give up easily and turn to drugs, alcohol and crime.  Many gifted kids become lazy and manipulate the system.  This is a social problem.  SO MANY GIFTED KIDS GO UNNOTICED .  And when they are diagnosed there aren't enough programs available to help them.  But this is a whole other issue....

What I'm trying to say is being gifted isn't just about being smart.  Usually with gifted children comes issues like severe anxiety.  Not the kind you get before a job interview or when you go out on a first date, their anxiety can be so overwhelming that other functions of the brain go out the window.  So we deal with peeing in pants during the day, lots and lots of lying, complete and total meltdowns, yelling and screaming that our rules and her life isn't fair, throwing herself against walls and doors, she won't sleep at night, she draws on furniture and scratches into furniture. And what's hard is we don't always know when this is going to happen, but I will tell you this...she usually always does it within the four walls of our own home.

We don't like going on vacations.  Because vacations means major change.  Lia doesn't do well with even small changes from our daily schedules.  But we do it for our children and our family, and we always know that we will be dealing with the monster version of Lia when we get home...why?  Well we may have finally, after four years of searching found a big missing link: Sensory Integration Dysfunction.  

We took Lia to Primary Children's for some testing...and sure enough she has it.  In fact she is so severe that the OT (Occupational Therapist) said she hadn't seen it affect a child this bad in all her testing, unless that child was autistic.

So what does this mean...I'm getting to that.  But first I want to help you understand why I am writing this.  While it is therapy to get all my feelings out in hopes that someone will understand how I am feeling every day and have empathy... My main hope is to help those who are feeling as defeated as I am.  I want you to see that maybe this is an answer for your child as well.

Lia from a very young age did not like textures.  She would gag easy and she would hold food in her mouth for hours...it was awful.  She hated socks and certain fabrics. She seemed calm but wasn't very affectionate as a baby.  Sensory babies are just like this.  Sensory Integration Dysfunction is where a person does not process sound, light, touch, smells, or any of the senses in a way that most of us do. In fact as they get older it usually disrupts almost every aspect of their lives, causing in some cases extreme anxiety, anger, and withdrawn feelings.

They have a hard time staying on task and may appear clumsy or awkward. Their fine motor skills aren't great and they struggle socially with their peers. They have a hard time following rules, they need certain types of touch, with Lia I have to hold her super tight or rub her arms and legs fairly hard for her to feel calm. Most are also very very sensitive emotionally.

There is a whole world out there for these kids.  I really believe that this is what we have been looking for for our Lia.  I pray that our days will get a little easier as we start her new therapy.  It has truly been a journey.  So many days I just want to give up and just see what happens, but when I see that she really does have these diagnoses and that there is help for her and us, I keep moving on.  She may never be my easy child...but if I can get her in a place where she can feel a world free of an overload of senses, then it will be worth it.

With love,
Niki

1 comment:

  1. Wow. What a ride you are on. You are such a great mom! How many would have given up by now but you haven't and that is everything. I recently finished an amazing book that you might find interesting called 'raising your spirited child'. It has really helped me with changing my perspective of my kids and loving them for the very things that challenge me the most. Heaven help us & you most of all :)

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