Tate is having wonderful experiences at school. He likes school
and that is so important. But that has not always been the case. Once upon a
time, he cried almost every morning before school. School was very stressful
for him. He had a lot of needs that were not being met. He could not
communicate his needs. Anxiety ruled him. It was hard on him and it was hard on
our whole family. Because when Tate is unhappy, we are all unhappy.
When Tate began kindergarten he had come straight out of early
intervention. He began Applied Behavior Analysis (ABA therapy) before his third
birthday and we aimed for forty hours a week of discrete trial. Incidental
teaching was used throughout every waking minute, trying to turn his whole day
into one learning experience after another. We were trying to “catch him up” to
his peers and get him kindergarten ready. We did the ABA with experts in the
field of autism and the price tag was huge.
I knew there might be some issues with the public school
immediately. One reason being-- I had called the public school and inquired
about their preschool program. I also asked about the district’s ability to
provide Tate with some services for our in-home ABA therapy program. The voice
on the other end of the phone told me if I had determined ABA therapy was best,
I had been reading all the wrong books. I knew ABA therapy was the ONLY
research-based therapy at the time. So my first impression of the special
education director and the program was not good. I did not contact the school
district again regarding Tate’s education until he was ready to start
kindergarten. We had an IEP meeting so Tate would begin school with paraprofessional
support. It was evident from our first meetings the special education providers
and I were not going to agree on what an appropriate education for Tate would
look like. It did not get better for a long time. I had set my expectations
high and I was sorely disappointed. I was also shocked. Tate has five older
siblings and I had NEVER had any complaints in the past about our children’s
education. I had a lot to learn about the difference between general education
and special education.
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| Tate at his early intervention program |
I had a lot to learn about the difference between private early
intervention and the public school’s special education program too. There were
few similarities. When I had questions about autism or challenging behaviors
while Tate was in early intervention the staff had answers. Those first few
years of public education I saw little evidence the ones providing Tate’s
services understood autism.
We had some unforgettable experiences those first few years of
public education. When Tate was six, one day he used his pencil to pretend. He
pointed it at his paraprofessional and said “pow pow.” The para mentioned this
to her supervisor. That teacher took Tate to the principal’s office. She asked
if the incident should be reported to the police as the school had a zero
tolerance for threats. Tate was six. He has autism. He was holding a pencil.
And he was made to feel like he had done something bad. In his early
intervention program it would have been celebrated. Pretending! Object Substitution
while pretending! This was huge! The autism expert from Tate’s early
intervention program would have written me a note or called me to tell me the
great news. In the public school setting he was taken to the principal. Luckily
the principal was a very reasonable man. When he told me about the incident he
was smiling and assured me he never even considered making that call to the
police.
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| Tate at Kindergarten |
One phrase I heard often when I made a request for a service
was, “We’ve never done that before.” Social skills coaching on the playground
was one of those things they’d never done before. The argument against it was
that Tate needed free time on the playground to do whatever he wanted. He would
have paced and stimmed. I did not want those precious teaching opportunities
wasted. The consultant / advocate I brought with me to our meetings argued for
the coaching. In an effort to convince me Tate did not need coaching on the
playground, the school district brought in their own autism consultant. The
plan was for her to observe Tate for a few hours and then give some
recommendations. (My own consultant had worked with Tate for years and knew him
well but they wanted someone to observe him for a few hours and make
recommendations.) I asked if I could be present to hear the consultant give her
recommendations when she was through with her observations. Even that was a
point of contention, as some did not seem to want me present. Thankfully, the
principal called me and told me when the meeting was about to convene and I
lived one mile from the school so I was able to get there and hear firsthand
what was said. I will never forget what I heard or the looks on faces that day.
That consultant agreed Tate needed playground coaching. AND she recommended even
MORE social skills coaching than I had asked for be incorporated into his school
day. I smiled all the way home that day. The suggestions made by the district’s
consultant were not implemented in full but I am quite certain they would have
gone with her advice had she said Tate needed LESS services. No one argued with
me about the playground coaching much after that. For every battle I won
though, I lost two.
We fought many other battles as well. I asked for Tate to receive a
warning before he was to have a substitute teacher. I understood it would not
always be possible and I know sometimes people become ill right before school
begins. However, if a teacher had scheduled an absence and I could give Tate a
warning before he walked into a room with a stranger in charge, it made a world
of difference to us at home. Tate’s anxiety level after having a substitute was
often high. I asked. I begged. I demanded. This became a real problem and no
matter how many times I explained the need it did not seem to matter. General
education teachers would willingly tell me when they were going to be absent. But
the special education staff rarely seemed to be able to get me that information.
The time that mattered the most was once when Tate had a gift to give a special
education teacher before the holiday break. He took it to school two days
before the break only to find a substitute. The secretary told me the teacher
had scheduled time to be off long before that date. He was so hurt. If the goal
was to show me who was “in control” then I was shown. Often. There was nothing
I could do. I saw over and over that one person could ruin Tate’s day and ruin
our evening. One person.
Para professionals and I often had to communicate in secret if
we had information we wanted to exchange because I was not allowed to talk to
my child’s paraprofessional without their supervisor present. I know what you
are thinking. It was a ridiculous rule. It was a hindrance to everyone
involved, especially my kids. I was told I could not even say, “There is a
Chapstick in Tate’s pocket” to the paraprofessional. The special education
director could not be moved no matter how many times I appealed to her. Despite
the rule, the paras and I found ways to communicate when it was in Tate’s best
interest. On two separate occasions I received phone calls at home in the
evening from two different substitute teachers I’d never met. Both had been
subs for Tate’s para. Both wanted to tell me something that had gone on at
school they felt I should know about. Both had been told they were not to talk
to me. They did anyway. Not that I was able to do anything about the problems
they discussed with me though.
I came away from that first experience with my district’s special
education department disheartened. It has taken me years to recover and be able
to fully trust my children’s IEP teams. We have wonderful teams now and are
very satisfied. The differences are amazing. My faith has truly been restored.
I learned some really valuable lessons and made some valuable
observations those first years.
1.
One person can make or break a
child’s education. One person.
2.
When your special needs child is
miserable at school, the whole family is affected.
3.
The words “Promote independence” are
spoken with a smile by educators, but those words are code for “reduce services”
and a parent should not be fooled. Of course everyone’s goal is for a student
to become independent, parents included. But not prematurely and not to save
the district money.
4.
If the school wants to amend the
IEP to “promote independence” and promises the services being reduced “can
always be added back in later,” it will take an act of Congress to get those
services back. Parents should not allow themselves to be coerced or pressured
into signing anything amending their child’s IEP to reduce services.
5.
The law says a child’s needs must
be met. So, in theory if there are ten children who need XX for one hour a day
and only one person who can deliver XX, working eight hours each day, the
district is obligated by law to hire another XX provider. In reality what I
believe happens is the children who needs the XX the most get the XX and the
children who need XX the least do not get it, OR the eight hours is split
between the ten children. But an additional provider of XX is probably not
going to be hired. The law is often ignored but dollars carry a lot of weight.
6.
Privacy policies can be a real
detriment to a child’s education and safety. Privacy policies keep substitute
teachers and many others from knowing about a child’s disability, needs, behaviors,
treatments…
7.
Not every educator is good at his /
her job.
8.
Tenure protects bad teachers.
