My First Social Story

So, let's fast forward 7 years.  Dylan is now in the second grade in public school, and I was about to seize the opportunity to write my first Social Story.

I received a meeting notice in his backpack asking me to come to an IEP meeting regarding his lack of compliance in going to speech therapy.

You know I never miss an IEP meeting!

Seems the problem centered around Dylan's complete refusal to go to speech therapy.  At first, when the therapist would come to get him, he would go with her.  He'd walk most of the way there and then make a beeline for the playground.  Later on, he would get very anxious when she walked into the classroom to get him and, finally, he just refused to go with her.

So, here we were in an IEP meeting to try to figure out Dylan's "non-compliance".  As I was sitting there listening to his teacher and the therapist, I started to think 'outside the box'.  I do this often.  Can't help it.  What were we missing?  Something.

Knowing that autistic children often have sensory issues, I began to think about the trip from the classroom to the therapy office.  What did Dylan hear, see, smell and feel on his way to therapy?  Dylan was not usually a willfully, non-compliant child.  So I asked if we could all take a walk to the therapy office.  There were some deep sighs (no eye rolls or tongue popping), but I just ignored them.

We walked out of the classroom.  Down the sidewalk.  Past some bushes with nice smelling flowers.  Turned left.  Walked on the sidewalk some more.  Under an overhang.  Past the playground.  Turned right to face the double doors going into the building with the therapy office.

WHOOSH!  As soon as the doors opened, a huge whoosh of cold air escaped.  It was enough to blow my hair.  As we walked through the doors and closed them, I could hear the air conditioning unit just above our heads on the roof.  I could also feel a slight vibration, too.

We walked on down the hall to the therapy office.  When we walked through the door, it looked like a nice space, except for the flickering flourescent lights in the ceiling.  I used this as an opportunity to educate the team on the possibility that flickering lights trigger seizures.  I was met with blank stares, so I offered to copy the associated research and send it to school in Dylan's backpack the following day.  Because Dylan was medicated for seizures, I asked for the lights to be fixed.

Then, I asked the team to go back out and walk through the doors with me again.  Another opportunity to educate.  I'd been reading about sensory integration dysfunction that Jean Ayres identified almost 20 years earlier.

We all stood outside the doors and I opened them to feel the rush of cold air.  I asked the group to pretend to be Dylan.  I reminded them about the discussions we'd had earlier about his near "freak outs" when the fire bell rang.  Then,  I introduced the concept of sensory integration dysfunction as a possible explanation.  I asked them how they thought Dylan felt when that rush of cold air hit him.  I suggested that his experience might be similar to a baby's startle response when you blow air in his face.

We went in and closed the doors.  I asked everybody to be very quiet and then asked if they heard or felt anything.  Thankfully, his classroom teacher  pointed out the sound of the AC unit.  I asked if she also felt the vibration.  She said she hadn't noticed it until I'd mentioned it!

I explained that Dylan's sensory issues were primarily related to sound and touch, and asked if there was another way into the building.  There was!  We walked to the back door.

The rush of air was much less noticable, and there was no AC above our heads!  Whooo, hooo!  But, there was still a pair of double doors to get through, and I didn't know if he would associate these double doors with the 'bad' double doors.

So, here was the opportunity to put Carol Gray's social stories to use FOR REAL!  Carol began using these stories in 1991, the year before Dylan was born, so with some practical experience and successes under her belt, I thought she was on to something and was determined to try it for myself.

My story was short, with child-like illustrations, in a picture book format that went through the whole process of getting from the classroom to the therapy room.  Knowing he would be taking a new path to go in the back door of the building, I decided to write a second story showing and telling him what he'd see on this new path, too.

At the end of the second story, I planted a seed.

The seed was just an idea.  An idea that, when he was ready to try the front door again, he could ask his speech therapist to go in the front door.

Within a month, he was going through the front door.

I was intrigued by the effectiveness of those social stories.  I began to think about other situations I could address with a social story.

Who ever said learning had to take place in a formal, classroom setting?  At this point, my "self-educating" was proving to be more than helpful for Dylan, I'd been able to share.

Another seed planted...

In the beginning...

Twenty years is a very long time!

It's also hard to believe that that much time has passed since our VSBJ (very special bundle of joy) joined our family.  What a beauty he was.  A real ham, too.  He smiled at me the first time when he was about a month old, and occassionally, he'd make these little monkey faces that were just too cute.  Like he was closing his eyes and puckering his lips to give me a kiss.

I actually caught one of his monkey faces on video and shared it, because he didn't do it all the time and it was just SO DARNED CUTE.

Except that it wasn't. 

What I didn't know was those monkey faces were just a precurser to some pretty debilitating seizures ~ infantile spasms ~ that would develop when he was 3 months old.  Oh my!  Those seizures were frightening.

He would hold his arms out like he was holding a ball, pull his knees up to his chest, and sometimes hold his breath.  Not good.  A call to our GP got us in to see her partner 2 days after these seizures started.  Not good.  The office visit ended in a diagnosis of GAS.  I was sent home with a bottle of Mylanta.  Not good.

Another call to the GP's office.  Thank goodness our regular doctor was back in town!  This time, we went to the hospital.  After many tests that I didn't understand at the time, our lovely VSBJ was diagnosed, for real, with Tuberous Sclerosis.

Wow!  No air in the room.  Breathe.  Just breathe.  In.  Out.

What a strange name.  Tuberous Sclerosis.  Interns at the hospital came in to observe our VSBJ.  They talked in hushed tones, looked at the special 'tattoos' that were all over his body, and talked to me about the infantile spasms.

I learned how to give that sweet, smiling, 3-month-old baby a shot in his thigh.  Deep breath.  Squeeze the thigh.  Insert the needle.  Inject.  Pull the needle out.  Apply the bandaid.  Hold the screaming baby.

After three days in the hospital and three days of "shot practice" we got to go home with a prescription for ACTH and a handful of needles.

I got better and faster at giving the daily shot.  Soon, I could do it so quickly that there was no screaming baby afterward.  Thank goodness for small favors.

This was just the beginning.  Twenty years ago now.  So much time has passed.  So many different challenges.  So many unforseen opportunities.

~ D