Friday, March 25, 2011

Sensory Integration Disorder and Neurofibromatosis

Sometimes I just feel like my life is just a process of rearranging furniture, in a house that's too small.  Nothing ever feels right, and I am constantly tripping over things that just don't fit right.

Anyone who has a child with Sensory Processing (Integration) Disorder knows that there are good days, and bad days...REALLY bad days.

I want so much to connect with my daughter, who is taking in the world at lightening speed.  Does she know I love her?  Or am I just another annoying noise to her?

When Rachel was a baby, I was told by doctors, she had colic.  When the remedies for this, didn't seem to be working, I was told that it was my breast milk, and that I needed to stop nursing.  Nothing seemed to fit, nothing was "fixing" the problems.

As Rachel grew, the SPD grew as well.  We didn't know it back then, even if we did, I'm not sure what we would have done differently.

Rachel is now 8 and finally got the diagnosis of Sensory Integration Disorder after being seen by an Occupational Therapist and  participating in many MANY tests, and filling out many MANY surveys.

But like with Neurofibromatosis....There were no clear answers.....No easy fix for this diagnosis.

I feel so helpless most of the time, because we never know what will set Rachel off.  Is the TV too loud?  Is someone sitting too close?  Breathing too loud?  Are the tags in her shirt bothering her?  Shoes too light?  Or like this morning....Did the egg yolk pop and run into the white parts?

These things often throw Rachel into "melt-down" mode...where reasoning is NOT an option.  I find it hard to not respond to this in a negative way, but ignoring it doesn't seem to do anything either.  Where is the balance with children who have this?

I have no answers....I am learning as I go.  Just like with Neurofibromatosis...I am left in a world of unpredictability, uncertainty and fear.  Fear that my child will choose to hurt herself, while she is in a fit of overwhelming rage....and that nothing I can do going to help her.

Is there something else going on with her?  Something more I can do?

She is receiving extra help at school from occupational therapists, the school psychologist, and her teachers....ALL who report Rachel is an "Angel" at school (with of course the difficulties in learning and large motor  skills) Who participates and is always willing to do what is asked of her.

Rachel also sees a therapist, who is also reporting Rachel as being "sweet and easy going".....Man if these people only could see, the switch that happens.  It's fast and furious and often comes without warning.

I have tried to video this explosive change...but this only gets Rachel more upset.

So we continue the dance around the egg shells.  We tell her how much we love her....and try hard to make things as easy as possible for her.

The Following are Signs of Sensory Integration Disorder

•        Over sensitivity to touch, movement, sights, or sounds
•        Under reactivity to touch, movement, sights, or sounds
•        Specific learning difficulties /delays in academic achievement  
•        Difficulty in making transitions from one situation to another
•        Tendency to be easily distracted / Limited attention control
•        Activity level that is unusually high or unusually low
•        Social and/or emotional problems
•        Difficulty learning new movements
•        Delays in speech, language, or motor skills
•         Physical clumsiness or apparent carelessness
•        Impulsive, lacking in self-control      
•        Inability to unwind or calm self
•        Poor self concept / body awareness


  1. My cousin recently sent me a book that gives a different perspective to people like us who are highly-sensitive.

    And here's a website about some of the ideas.

    I like it because it doesn't label sensitive people as having a disorder. Although it might be a challenge for other people to have to deal with us, that doesn't mean we're the ones who are disordered : )

  2. Sam has SPD as part of his FASD. Do you remember how he had to be swaddled tightly all the time? And he would scream, scream, scream as a baby? Once he was out of his crib, he had to be covered with ten (literally) blankets to sleep. He's grown out of that some. I think he's down to four blankets. Ha. He also likes his clothes too small. Imagine a mother's pride in that... yes, I do take care of my children and find clothes that fit them, one of them just won't wear them. LOL. When he's worn the same shirt so many times that it is black, I have to sneak it into the garbage. I should smarten up and start buying three of everything. Wait a minute... I buy everything second hand and the rest are hand-me-downs. darn.

    Just letting you know you have a sister on this journey!