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

Sensory Processing Disorder

Even when Rachel was a newborn, I knew there was something different about her. She came out of me, totally silent. She looked around the room taking everything in.

The Nurse to get her to cry by rubbing and flicking her feet, s triedbut she just laid there.

When I brought Rachel home from the hospital, she never left my side. When she did, she erupted in uncontrollable crying.

I mentioned to Rachel's doctors at every visit that she was a very "clingy" baby and was only content when I would hold her and nurse her.

It was suggested by the doctor that we get Rachel a "binky", so she could learn to sooth herself, and give me a little break. She became very attached to the binky, not giving it up until she was 3 yrs old.

The binky did help, but as Rachel began crawling then eventually walking, the "fussiness" became more like tantrums. Rachel didn't walk on her own until she was almost 2 yrs old, the "fits" she had, I admit had her in my arms for most of the first 2 yrs of her life.

While I knew it wasn't helping Rachel to be constantly holding her...It seemed the only way, to have a relaxed baby. The whole "let her cry it out" thing, just wasn't something I was about to do with her.

As Rachel grew into a toddler and preschool age the attachment to me got less and less. She would go off on her own to play, but as soon as someone other than me, got into her space, she would scream and cry.

Smells and loud noises also triggered Rachel to throw tantrums. She would gag with smells and cover her ears with noises like cars or the tv. She didn't like tags or "scratchy" clothing. All of the doctors reassured me that we just had a sensitive child, and just needed to be patient...she would surely outgrow this.

A recent round of tests, prompted by Rachel's constant complaints of leg pain, led into a direction, where all of the lights just seemed to go on. Xrays of Rachel's leg showed bowing and "inflammation". Neurospych evaluations began to show a bi-polar/ADHD/ sensory issues.

Fitting the puzzle pieces together, finally gave us a diagnoses of Sensory Integration Disorder. It explained so much of what we were experiencing with Rachel. While I was happy to have the diagnoses I still refuse to slap a label on her. While labels can help us understand the problem, they can also limited the possibilities of a solution.

Check out this list for signs for SID. If you feel your child fits this diagnoses, please notify your child's doctor. This blog is NOT meant to give a diagnoses...just information.