Overcoming the Unexpected

Learning something from a previous experience or mistake is a common thing in life.  We all do it.  But putting into action what you learned may take more effort.  I think this is common as well.  As I left off on the last blog, we were exiting second grade and a year that proved full of lessons.

I can remember how happy I was to be in summer that year.  It was refreshing to be out of the school schedule and all the feelings that I had amassed related to the school.  Elizabeth was ready for summer, and I was officially leading the parade out of the school for a much needed chance to relax, regroup, and plan for next year.

But before we visit the school year, we have to talk about our summer.  As I said prior, Elizabeth has a summer birthday, so this year she asked us for a blow-up water slide for her present.  We had seen one in the newspaper, so we got it, put it up, and watched our sensory child have the time of her life climbing this wiggly, wet, cold monster and sliding down about 1,000 times that summer.

The only small problem we had with the slide was that she was a little too encouraging of her toddler brother in his attempts to climb the slide to have his turn.  We had to explain many times why Michael, although crying to try it, was not to be pushed up the ladder to help him get to the top.  In any event, the summer was really fun and a nice respite from the stress of school.

But we all know that all good things must come to an end. Soon August was in front of us, and with it came the awareness that school was on the horizon.  It was time to plan how to handle the third grade year.  I decided the following:

• Do not assume that information about Elizabeth gets to everyone, do it yourself.
• Do not assume that work is getting done for Elizabeth, visit the school once a month at least.
• Keep a daily communication notebook and express any and all concerns on it.
• Do not be afraid to ask for something for Elizabeth when the need presents itself.

Now I had a game plan and was quite happy to find out we had a very cooperative and kind inclusion teacher.  I communicated Elizabeth’s needs and strengths to her as well as talking to the intervention specialist prior to school starting, and we arranged meeting times.  The communication notebook was ready.  Check, check, check!

All the parts of Elizabeth’s day were going well.  The communication notebook was so helpful in keeping up with her day to day feelings and activities.  So I was enjoying the positive changes….

The thing is, when you have a child with special needs, these needs are dynamic in that they change.  And sometimes, they change quickly and without warning.  One day she came home happy and chatty, and the next day she came home quite angry and stressed.  This went on each day and she seemed to get a bit more stressed each day.  It was like she would JUST make it in the front door before she would meltdown.  Every day, the same way.   So I:

• Checked the notebook
• Talked to Elizabeth
• Wrote notes to the teachers
• Even visited the school

I was told nothing was wrong at school, so I knew that these were signs of her sensory issues resurfacing, and that she needed some calming activities or brushing to help her through the day.  This was a new twist, because she had never needed this before during a school day.  I wanted the school to brush her during the day and thought about telling them individually about our request, but then I reasoned it would be easier to talk about her needs fully at the upcoming IEP meeting.  We had an IEP meeting set up for fall to sign the new IEP.  I envisioned that I would talk about her sensory needs, make a plan to accomplish this, and then all would be well.

Yes, that is what I thought would occur.  I never thought I would be met with any resistance.  Yes, I heard it even as I wrote it. Just how naïve and trusting I was early on!

The meeting went like this:

• Our therapist, Mary, and I talked.
• Our private OT, tutor, speech therapist and I talked.
• We made a plan of who would be at the next meeting.
• We contacted an advocate
• We made a plan for our requests
• We fought for our daughter

I am happy to say we got the sensory diet and oral motor protocols put into her school day. But there were some casualties by the roadside for sure, such as many bad feelings and changed relationships.

But why the fight?  Aren’t we all really on the same side? And that side being FOR the child? I offer out all these experiences, because so many people are just beginning their experiences within a school system and maybe by reading our experiences, they will gain strength in their own advocacy for their child.

The remainder of the year went like this.  I would visit the school every three weeks to check in.  I made check off sheets for the teachers and speech therapist to use to show that both the sensory diet and oral-motor protocol were being followed.  Between the sensory diet followed at home and the one at school, Elizabeth’s system calmed down and she no longer arrived at our doorstep in the overwhelmed, angry fashion.  She was able to enjoy her school day feeling calm. The things we were asking for were what she really needed, what her system really needed to function.

Now that we had a sensory diet in place, we hoped all would be well. Our IEP stated when she would have time in the inclusion class, but as the year went on, we noticed she was spending more and more time in the special education room and less and less time with typical children.

For those who don’t know, Elizabeth is one of the sweetest, kindest, most gentle, and extremely social people you could ever come across. But the truth is, she does need extra support in her school day in the form of reminders, encouragement, and understanding of how she works.  So during one of monthly meetings I asked why this was.  I was told:

• She sometimes looks overwhelmed.
• The inclusion class is working on a project.
• We have something we need her to do in the special ed. room.
• The work is too much for her in the inclusion class.

We were unhappy in this area, as we wanted Elizabeth to have the chance to be with and learn from typical developing children.  We knew that the content of the classes needed to be modified for her, but being in these classes would do many things:

• Give Elizabeth a chance to learn how to act in a typical classroom.
• Teach her how to engage in group projects.
• Allow her to feel like part of the class.

We did not pursue this point with the school this year but had plans to focus on this issue the following school year.  For those who have children in a similar situation, you may wish to be alert to the time your child actually spends in the inclusion classroom.  My hope is that what is on your child’s IEP is actually being done.

The year wound up with a very positive occurrence, Elizabeth was voted student of the month by her classmates.  It is an award that not everyone receives, and she was the student of the month for April. I am sure when it came home, the neighbors three houses down in either direction heard my happy screams!

So much good is coming for Elizabeth in her personal growth, talking, and social abilities.  We have always believed in her abilities, but we had to work to understand her disorders. We leave the year feeling like the school understands her disorders and even Elizabeth.  This is a good thing.

We leave third grade and head to fourth. I will put the “to-do” list away for the summer and focus on fun, sunshine, and keeping Elizabeth from succeeding in getting her brother to the top of the waterslide.

As ever, the journey continues….

-Michele Gianetti

Michele writes for TalkTools Blog every month about her experience caring for Elizabeth, her daughter with Sensory Processing Disorder and Dyspraxia. Follow her story since the beginning here.