The Journey to “Normal,” Part 5: Structured-Teach and Therapy

The district where Imma attended PPCD (Preschool Program forChildren with Disabilities) and where I used to teach has a renown autism unit.  They have an amazing team of autism specialists.  Parents move their families, actually relocate, so that their autistic children can attend public school in that district and get the same amazing services some people have to pay thousands of dollars annually to receive in private school or private therapy. If your child is autistic, that is the place to live.

But my child wasn’t autistic.  And I had the evaluation to prove it. 

Imma's first day of school 2011-12

Imma’s teachers were convinced that she would benefit greatly from the autism unit at their campus, also known as the Structured-Teach Classroom or STC.  They showed me tons of data they had collected which demonstrated how Imma responded to direct teach.  This is when the teacher works with the student one-on-one and using the ABA (Applied Behavior Analysis)materials in this setting, Imma was making progress.  The data didn’t lie. 

I was afraid. I didn’t want Imma in the autism unit.  I didn’t want her labled as autistic,particularly if she wasn’t.  I wanted her to have good role models, typically developing role models, verbal role models.I was afraid she would stop making progress in that setting. I was assured that this would not be the case.  She would continue to flourish.  And, after-all,she did seem to be responding to this method. Maybe it would be the best place for her.

She was also very interested in reading.  She loved letters and was starting to read words, particularly animal names.  The school psychologist who had performed Imma’s autism evaluation suggested that we look into hyperlexia.  It is not a stand-alone diagnosis but it was possible this was part of Imma’s gift.  Hyperlexia is the opposite of dyslexia.  It has different forms, like all conditions,but it is generally characterized by an over-emphasis and fascination with letters, letter sounds, numbers, reading, the alphabet in general.  There were other factors that indicated Imma might be hyperlexic.  Most hyperlexics have speech delays but are extremely agile and coordinated.  Hyperlexia manifests about the same time thatwe started noticing differences with Imma. The more I looked into hyperlexia the more I thought, “This sounds like my daughter.”  Unfortunately, very few people are familiar with hyperlexia and there is no “treatment” program for hyperlexia.

After several lengthy discussions, my husband and I decided to place Imma in the STC classroom for the 2011-12 school year.  Our main reason for doing so was that we wanted to give her the best possible chance at being able to attend regular kindergarten.  We were under the impression that, if she worked extremely hard all year, picked up a lot more skills, and was beginning to speak by the end of that year, she would be able to attend regular kindergarten with minimal special education support. The teachers were very happy that we had agreed to put her in the STC classroom and assured us this was the best place for her. We met her teacher and though she was wonderful.  Kind, loving, extremely professional, clearly very knowledgeable about her area of expertise. We really thought Imma would do well in her classroom.

We also enrolled Imma in private therapy during the summer.  We thought she could benefit from as much help as possible, as we made the Push To Kindergarten.  We drove an hour each way from our home twice a week so she could attend two half-hour sessions of speech and one half-hour session of OT (Occupational Therapy).  We loved her therapists and thought they were teaching her some great skills.  Most importantly, I felt like these therapists were listening to my concerns a lot more so than the staff of Imma’s school. 

If there is one thing I hope you get from this particular post it’s this:  My daughter works harder than anyone I have ever met.  And she doesn’t get enough credit.  Imagine if you will that you are in a foreign country. No one speaks the same language as you. You’ve had no lessons in their language and you can only understand a handful of words.  And these people are constantly telling you to do “something.” They are giving you directions, minute by minute.  Do this, do that.  But you have no idea what they aresaying.  This is my child’s life at school. This is her reality.  Not only does she have no idea what is being said, at school, in the STC unit, she had no role models to observe and follow. She couldn’t read the autistic kids to see what she was supposed to do because they didn’t know either. But she kept on trying and working.  She began to slowly acquire new skills. Her private sessions were also very helpful and we continued them through the school year.  A long trip, twice a week, after an exhausting full-day at school, was tough on a four-year-old and her baby sister.  But they did it because I asked them to.  This was the Push to Kindergarten. And it was critical.

Imma in October of 2011

Around October, Imma’s hard work was rewarded. Instead of spending the full day in STC, she would be going to a regular PPCD class for half of the day.  This was good news.  This was a step towards normal.

Then December hit and something happened.  I don’t know what it was but Imma’s behavior tanked, hard.  She began acting out like nothing I had ever seen before.  She was hitting, biting, kicking, defying her teachers, being rude to her classmates and friends.  She was acting out at home,too, hitting her sister, disregarding our instructions.  Something was very wrong.  We had parent-teacher conferences in December, in January, in February.  She was kicked out of daycare in March, no longer allowed to come back because she was too dangerous, too mean to the other children.  I thought maybe she had a poor example in the STC classroom but the teachers assured me this was not the case.  I was beside myself.  I had tried everything I could think of;punishment, reward, threats, everything. Nothing was working.  In April,she was kicked out of another daycare. We were on our Push to Kindergarten and this behavior was detrimental to the cause!

In April I was asked to come in and observe Imma in the PPCD classroom.  The teachers were beginningto  build their case for STC  the next year.  I knew this because I am a teacher.  I could smell it in the air. I could hear it in the tone they used when they talked about Imma’s progress.  Academically, good. Speech, good.  Behavior, terrible.  But the pluses did not outway the minuses.  I knew they were going to recommend STC and I was preparing to fight it.

Imma and her sister Lucy in December, 2011

I went and observed and made mental notes.  Imma was compliant while I was there. She did several things that indicated to me she was ready for kindergarten.  Imma may not speak well, but he gets school.  She had been in school for two years and she knew how to “do school.” Her behavior was actually getting better at this point.  Academically, she had almost all of the skills she needed for the first semester of kindergarten, and I knew this because I taught kindergarten for four years.  When we met to discuss her placement for the next year,  I proposed all day kindergarten. I was countered with the other extreme.

Something I didn’t mention and probably should have.  Throughout the entire school year, whenever I met with staff members of Imma’s school, they consistently referred to her “autism.”  They said she was categorized as having “EarlyChildhood non-categorized autism.”  They implied that this was a diagnosis.  I knew my child did not have an official label of “autistic” but because theyconsistently referred to her “ECNC” placement, I was under the impression that this was an actual special education qualification. IT’S NOT!  If anyone ever tries to convince you that your child should be in an autism unit or follow an “autism schedule”because they are labeled as ECNC, contact me immediately.  I’m not kidding.  This is not a qualification for special ed.   If I, a teacher, can be fooled,anyone can.

Imma in April, 2011

When we met to discuss Imma’s placement, the principal whom was conducting the meeting told us that she had to follow the recommended “autism schedule” because of her autism.  I politely reminded her that Imma was not autistic.  She politely explained that the ECNCqualification meant that she would benefit from the autism schedule.  The proposed schedule showed only 20 minutes in the regular education classroom.  20 minutes per day, out of a 7 ½ hour day. I wanted the exact opposite.  I was again reminded that we had to use the autism schedule.  I finally got a little worked up and said, “Show me one piece of paper that says that my daughter is autistic and I’ll agree to it right now!” Of course they couldn’t, because she isn’t.

At the end of this meeting, which was not Imma’s annual review but a pre-meeting the staff had arranged to test the waters, we were asked if we were going to contest the committee’s recommendation.  My emphatic reply, “No, I’m not prepared to disagree with the ARD committee’s recommendation, but I am prepared to pull her out of this school district.”