Saturday, November 13, 2010

My Totally Normal, Average Little Girl

I met with Madison's teacher for our first ever parent-teacher conference yesterday.  It was a pretty relaxed affair - this IS kindergarten after all.  Not worried about standardized state tests or college applications or SATs quite yet.  

And, we knew what to expect.  Abby and I are very involved parents.  We've kept abreast of Madi's progress, we communicate with her teacher often, so we knew we'd be getting a good report.

Still.  I felt a little trepidation, because this was a huge milestone.  We don't talk much about it in the light of Zack's autism,  but Madison was diagnosed with something called "Sensory Integration Disorder" long before Zack was diagnosed with autism.

Now, I know.  All these diagnoses and disorders. These things never existed when I was a kid.  Madi is almost a carbon copy of me, and what was I called in elementary school?  Busy.  Wiggly.  Unfocused.  Inattentive.  Very, very active, with a huge imagination and a tendency to tell stories (go figure).

But, I attended school in a different era.  Education was more formal, stricter, more structured.  Though I had a very hard time fitting in, I eventually sorted things out because school forced me to sort them out.

However, sometimes when these things get passed down they get worse. Whatever it is that causes these sensory issues, Madison got a huge dose.  We noticed after Zack was born a radical change in her behavior.  We couldn't take her anywhere.  At age three, in a crowd, our normally quiet and polite little girl became an uholy terror.  

Plus, though her vocabulary seemed very advanced, we noticed her muscle tone seemed underdeveloped, as well as her fine motor skills - she couldn't dress or undress herself, when most three year olds we knew were at least experimenting, and she had trouble holding a pen.  

Very loud noises reduced her to hysterics.  We had to create a sound vacuum in her room at night with fans, air conditioners and humidifiers, and even to this day if the power goes out and those things go off, the sudden SILENCE makes her wake up, screaming bloody murder.  

She also experienced sleep difficulties - not as bad as Zack has been having - but then it seemed bad - she got up every night around midnight and got up at the crack of dawn, so eventually we bought her a weighted blanket to help her sleep.  We've also had to seek out some herbal alternatives which finally allowed Madison to sleep AT LEAST to 6 AM every day.

She also suffered high food sensitivity.  From infancy, certain food textures made her vomit.  Automatically.  We thought that would fade with age, but as her diet became more varied, it got worse.  Some foods just made her puke, either because of allergies or the texture. She couldn't eat chocolate or sugary foods. They made her puke.  Heck, touching things like play dough or shaving cream made her gag.

Also, because of this sensitivity, she wouldn't take medicine willingly - of any kind.  We couldn't even hide it in her drinks.  Imagine what a nightmare that became, when she got really sick and ran very high fevers. I'll say one word and then move on: suppositories.  

Ironically enough, if you look at the Autism Spectrum of Disorders, Madison's issues place her very near Aspberger's Syndrome.  She doesn't have that or ADHD - we're very meticulous in getting her diagnosed every year, to have it on paper she DOESN'T have either - but it'd only take a nudge.  For her to have those traits and for her brother to have autism is very thought-provoking about the nature of autism, in general.

She started getting intervention, saw an OT twice a week for almost two years.   This turned out to be a small blessing because it paved the way for Zack's more intensive intervention, made us more prepared.  

She did very well from the start.  We saw immediate improvement.   Still, her intervention carried - still carries, actually - a daily burden that we've probably gotten so used to, we forget about it.

For example, the last two years, we've used a brushing protocol on Madison.  Basically, because she struggles with a higher than normal difficulty in processing sensory stimuli - either she feels too much or not enough - she got wild.  Hyper.  Out of control.

Either the overload in sensory stimuli pushed her behavior over the egde, or lack of it caused her to act out in order to feel sensory stimuli.  So we "brush" her - on her arms, legs, and back - to not only give her a regular does of physical stimuli so she doesn't act out in search of it, but helps her learn to regulate stimuli and not get overloaded.   

But we've had to brush her every two hours.  We've done that for that last two years, no matter where we were or what we're doing: brush her arms, legs, and back every two hours.  We also do joint compressions - which involves compressing the joints at her elbows, wrists, ankles, and knees.  This also provides regular sensory input and calms her down, but like the brushing - we have to do it every two hours, sometimes ON the hour.

At this point, it's become part of our lives.  We're used to it.  Luckily, she's showing a lot more control, so we see ourselves phasing out of this soon.  Already, she goes through her entire day at Kindergarten without brushing or compressions.

And that's where our anxieties lay.  Left to herself and in controlled, quiet environments, Madison is cheerful, relaxed, polite, easy-going and easy to manage.  Wildly intelligent. What a shame it'd be for such an intelligent, cheerful little girl to struggle in school - maybe academically - because of behavior issues that had nothing to do with intelligence.


Well, this summer and fall have been banner months.  She's done SO many things she's never done before.  Like take risks on scary amusement park rides.  She attended several summer camps unattended, on her own, and she thrived.  She even played soccer this fall (it was a kiddie program, of course), something we never thought she'd be able to do.  

And, as per the meeting yesterday, she's thriving in Kindergarten - again, something we feared wouldn't happen.  In fact, even though she's busy (in the words of her teacher, "she needs to be moving even when she's moving") likes to talk and is prone to telling stories (hmmm), she's right where she needs to be, and neither her teacher nor the building OT see any sensory issues at all.

She's totally normal.   You may think, "Well, of course she is.  Why wouldn't she be?"

Us? We're sorta thinking it's a miracle.  Guess it all depends on perspective...