I have been struggling over the last 6 weeks, trying to find
a way to describe what has been going on with Jack. I am not someone who jumps on my blog and
bashes people. I also have been repeatedly thanked for my "grace" by the school system throughout this situation, and I do want to maintain my goal of taking the high road. However I do try to be
honest about our experiences as a family.
And I do want to share what we have been going through.
Before I do, I have a confession. When Jack first started school, and we
were successful in keeping him mainstreamed for several years, I really didn’t
understand what all of these other parents were talking about. We struggled in getting Jack the help he
needed because he was labeled “high functioning”, but with the help of an
advocate, we were able to work through that, or at least to an acceptable
extent. So why were so many parents of
special needs kids calling public school a nightmare? Fighting so hard with staff?
All it took was one bad experience. As a special needs mom, my children have
attended 8 different elementary schools, (and they are only 6 and 9) not because of problems, but because
different programs are just housed in different places. For the most part, we have had completely
positive experiences. Even Jack’s
initial elementary school, which has a reputation for being particularly
difficult on special needs families, was over all very supportive. When he was moved to another program this
January, it was not because he was failing to meet or make progress towards his
IEP goals, it was because the teachers found he made the most progress in a
small group setting, which this new program was said to offer for all core
curriculum. And to be fair, the program
did “offer” this.
I wish I could pinpoint what happened. Where it all went wrong. All I can really say is that the new school
was not prepared to handle my son. That
my son went from making progress in all IEP goals in a mainstream program (since pre K), to a
“more supportive environment” and his progress completely tanked, per their
report. I say per their report, because
we saw a very different child at home, one who made great strides in his ABA
goals, one who continued to be able to socialize with his friends from his old
school with some support, one who successfully participated in an adaptive
team sport, and enjoyed it! In
school? I was told that he was not “capable”
of “being with his peers”. He was fully
pulled out for all academics, and often pulled out of the pull out (to a one on
one setting instead of small group). He
was isolated- not able to eat in the cafeteria at lunch, something that was
NEVER an issue, not even for snack time in pre-k. Something that my 6 year old “severely
autistic” son does daily at his school, because he is supported. His IEP progress report in June showed that he was not making adequate progress toward any IEP goals except....handwriting. Which by the way has always been the bane of his existence. No matter what justification was given to me,
my opinion remains that the school did not want to deal with my son. They did not like that he, as my husband so eloquently
put it “upset the apple cart”. This was
a new, small program, and when I toured the school back in December I was
shocked by how quiet the classroom was- my son is not quiet. He is not naughty- but he is not quiet. I think this was not appreciated by some of
the staff. I think his need to socialize
and unfortunately disrupt some of these other children was resented. I think that any and all possible behavioral
issues were emphasized and examined under a microscope. When your child is at home on the weekend and
you ask him to go to his room and do something and suddenly for the first time
in his life he responds with “is that a threat?”, it is clear that someone has
been asking him that same question.
I am not a mom who puts her son up on a pedestal. I have always advocated for more services for
him, I have recognized his struggles and taken action as much as humanly
possible. That being said, this spring
was the first time I have ever experienced the feeling of my son seeming to be
targeted. Things that he would say out
of frustration in his old school setting were interpreted in the worst possible
way at the new school and perceived as actual threats. And while he definitely was trying to express
an emotion or frustration, it was never taken into account that he was
scripting, something he has done since the age of 18 months old. He pulls statements from programs he has
watched or books he has read, and puts them into his dialogue if it seems
appropriate to his situation. When he
was younger it worked against him because he was using sophisticated vocabulary
and after people heard that, their expectations of his intelligence became
super high. Now it works against him
again because he is not just spewing facts anymore, but also trying to find a
way to express his emotions, something that is very hard for many kids on the
spectrum. He chooses a quote that sounds
threatening, and is reprimanded as though it was an independent thought. Yes, it was inappropriate, I get that. But was it meant in the spirit in which it
was received? Ummmm, no way. I promise that my 8 year old is not likely to
seek revenge on you, BUT he does like to watch My Little Pony, and they do say
that in an episode….
I mean, when he gets upset at home and cries he says “tears
run down his spiny cheeks”. No, he does
not have spiny cheeks, he is quoting from a book about a little porcupine that
we read when he was two years old. He is
telling me “I am sad, so I am crying.”
And I get that, so I don’t look for whiskers, or god forbid quills!
I’m not suggesting he doesn’t have any behavioral issues,
because he does. As our children get
older, they are not maturing at the rate of their peers, which SHOULD be a duh
for all parties involved in their care, since they are “special
educators”. Our children’s atypical behavior,
while it has not changed, does stick out more than it used to. And in a new setting- they are penalized for
it. Inappropriately. They are judged harshly, they are treated
like “problems.” What I am saying is that while it’s not fair, and it’s not
right, we as parents have to prepare ourselves for this eventuality. It should not happen, but in a situation where someone does not know, or take the time to get to know our children, it is a distinct possibility. We went to his most recent IEP meeting (last Thursday) and it
was suggested by the central representative that he would be ok in a type II
special education program (which means still housed in a mainstream school,
with the opportunity to interact with typical peers, as opposed to a type I,
which is a separate day school). My
response was this- he absolutely should have been fine- however after his and
this family’s experiences this past spring, he needs time to recover. He needs
to feel supported and have time build his self-esteem. When you are treated like an "issue” in a
setting where you used to feel accepted and even loved, it can be very
damaging. We are just now, in summer
school, working through his tears each morning because he does not want to go
back to school.
As a parent, this is not only heartbreaking, it is
maddening. I, as Jack’s mom, have been
traumatized by this experience. My level
of trust in the school system has plummeted.
I am at risk of becoming “that mom.”
The one that feels the need to drop in for “surprise visits” to ensure
my son isn’t locked in a closet somewhere.
The one who calls every time my son comes home saying something negative,
to make sure everything is ok. I do not
want to be “that mom”. I never was. But my son has the right to an education in
the least restrictive environment possible, and he has the right to expect fair
treatment. And without question, he was denied both of these things this past spring. And he is
my child who can talk to me!
At the IEP meeting with his school back in May, something was said
that I will never, as a special needs mom, forget. In the presence of the least restrictive
environment specialist, the school behavioral specialist, our IEP advocate, and
Jack’s BCBA, we were told that this school’s program was there to support
children with learning differences. We
were told that they were not “equipped to handle autism and all the support
that is needed for autism.” Our BCBA
still brings this statement up frequently- as someone who has been in special
education for over 20 years, she was shocked into silence herself. I want to say this, for the record. None of us are- equipped to handle autism
when first we encounter it. I can assure
you that John and I were not equipped to handle autism. And yet, here we are, doing it! Autism is being diagnosed at a head spinning
rate- a rate that is increasing each and every year. If your school does not become equipped to
handle autism, you will be doing a vast number of amazing children a horrible
disservice. My son is phenomenal- and he
will be back in a mainstream school in the next few years god willing. More education for mainstream educators is
clearly needed, and needed quickly. My
son did not deserve to come away from this experience feeling like he was a
problem. And it will take years to get
him past this. Equip yourselves, because
if you are supposed to help children with “learning challenges”, I can guarantee
you will be seeing more children with autism in your program.
