We have one child not functioning right now. It's been very difficult and very sad, but we carry on hoping for the next medication to help. (Believe me, we've tried ALL other avenues.) We've just received his updated testing results. We thought we were looking at possibly childhood Bipolar, but it isn't. Instead there really isn't a name for it; it just fits under PDD-NOS still. Rigid thinking, inability to disengage in his thought process. It could be a precursor to OCD. His anxiety is through the roof, and he has dropped out of everything he once loved such as school, scouts, basketball, church. Everything.
Why don't you just make him go, you ask? We've tried. He crumbles. He paces. He head bangs. He needs to feel safe. Somewhere. The school wanted us to call the police and MAKE him go. HA! How hard is it to understand that Mason is NOT doing this because he is manipulating his parents and the system? He has never been that kind of kid. He is innocent, I tell you! Yes, his behavior looks as if he is trying to get out of things that cause him distress, but take a step back and really "see". What is causing this behavior that we haven't seen since he was a toddler? He is approaching puberty, and I have heard some kids on the spectrum go through puberty early. He is 5' 9" and weighs 185 at age 11 years old. This kid has always grown fast so I am sure hormones coupled with chemicals going haywire are contributing to these daily meltdowns. He feels like he is going crazy when his mind gets "stuck". It is so sad to witness.
What I have learned from all this, is that people don't really care unless it affects them personally. The school is too worried about their numbers, or they don't get funding. After 12 years of our kids going to this school, we experienced yet another loss when we had to pull him out of school.
Here is an excerpt from a complaint letter I filed:
During the 2011-2012 school year, Mason started to get
headaches. He said he couldn't
concentrate in school and couldn't understand the work. The work was getting more difficult and his
anxiety level escalated. He began
missing school days. We as parents tried
many different tactics, from a 'tough love' approach to reducing stressors and
we met with his school teacher who did a good job at helping him such as giving
him extra time to complete homework, staying after school, etc.
According to teaching staff, he appeared at
school to be "checked out". The staff wanted to implement a behavior
plan, but we wanted to wait. There was a reason behind his so-called
behavior and we needed to get to the
bottom of it. We had scheduled many doctor appointments and were waiting to get
him in to see his neurologist. It took
some time.
In the end, Mason was just not able to attend school without
a battle every day. As parents, we knew
he was deeply depressed and anxious and this somehow was stemming from
difficulty with comprehension due to his PDD-NOS. His physical complaints were an outward
display of the inner turmoil he was experiencing. He struggles with expression of speech, and
couldn't explain and didn't know why he was struggling so. He just knew he was different than the other
students and his previous attempts to fit in, such as using a sense of humor, were
not helping anymore. He was in a
downhill spiral and had slipped through the cracks.
As his mother, I knew eventually his peers would surpass him
in development, but had hoped that we could get him through 8th grade at ****
with minor issues. To school staff, it
appeared Mason had pulled the wool over his parent's eyes, and he was
deliberately being difficult because he wanted to be homeschooled. While that may appear so; one must take in
account that a child with Autism has great difficulty expressing themselves and
physical complaints are great indicators that we need to look further into what
the problem actually is. Children with
Autism Spectrum Disorders have great difficulty LYING. They are concrete thinkers.
Our issues with **** is this: Making assumptions that a child is
manipulating their surroundings/parents/teachers is incorrect. Putting undue
pressure on parents to "get the child to school, even if you have to call
the police" is inappropriate. If a
child had a brain tumor and required homebound services, would there be such a
battle over attendance? Why should it be any different if a child has mental
and emotional problems? We understand **** will not get funding without a 97% attendance average, and staff are in
jeopardy of losing their jobs. What about the mental, emotional and physical
health of a child? Shouldn't that come
first before they can be educated?
We as parents felt intimidated and pressured to get Mason to
school. He had missed 16 days of school by February
2012. We had exhausted all available
resources and just needed some understanding and patience. We have been affiliated with **** since 2000,
when our oldest child started kindergarten.
Frustrated, we pulled Mason out of **** in February 2012 to
homeschool him and to get him appropriate services so that he can eventually
achieve success.
It would have been
helpful if the school could have offered homebound services for Mason. I did not know such a thing existed until
recently. Now, because we pulled Mason
out of school, he has lost his place at ****.
He not only lost his place physically, but emotionally and mentally as
well.
A blind child would have had more accommodations in place
than a child with High Functioning Autism.
The Center for Disease Control recently released the latest
facts: 1 in 88 children in the United
States are diagnosed with an autism spectrum disorder. And these stats are 4 years old!
PS:
There has been another incidence where we felt intimidated
by the dean, ******. Our youngest
child with severe Autism had his name drawn in their lottery for acceptance
into the school. He was six years
old at the time. The special education teacher and ******
expressed their concerns about our son's severe condition and that, because
they are a small school, they do not have the space for him if he were to be
disruptive. He would have to be taken
out in the hallway to stay. They were
also concerned that they would have to hire an aide specifically for him and
that they needed time to find someone.
They were not very positive, but by law, they have to adhere to the
rules, and it was very obvious that they did not want a child with severe
Autism to be among them. We went home to
think about it, and in the end, didn't want to cause the school to be burdened
with our severely autistic son.
So tell me, should I sign this letter to request a formal investigation
into the school? Or should I just leave it and move on?
I HATE causing waves. I do not like conflict of ANY kind and I shy away from it. I don't know what to do.
Well, I still think you are the Autism pioneer for children in this locality. I would suggest a formal investigation into the school as long as they protect your identity so there wouldn't be in repercussions to your family.
ReplyDeleteThe whole Autism epidemic is still "new" and must go through many stages of awareness and reformation--especially in smaller populations.
In the meantime, there must be people like you who leads the way to this awareness for the many to come who have to deal with this disability. I say bless you, stand tall and go forward in the cause of goodness!
Conflict seldom solves anything. As I read your story my heart ached for your baby. How difficult and overwhelming it must be for all of you. And my next thought was for all the other parents who say nothing. Perhaps you filing a complaint would not only benefit your family but also other families who lack the courage to fight for themselves. Or for future parents of children such as yours. Schools like this need to be held accountable for their behaviors. What if they were in your shoes? I am so sorry.
ReplyDeleteThis is a very hard decision as you still have another child in public school. For me, it wasn't worth it then to file complaints (state law is always, always on the school's side anyway, really, and they will fight you with YOUR tax money).
ReplyDeleteBut if you're ready, and you have some help for the long haul, I'd go for it. I hope whatever happens that your son thrives and is happy. Because that's what it's all about.
Thanks for everyone's reply. It's good to get someone else's perspective! It really helps. :) --Steph
ReplyDeleteHey Steph
ReplyDeleteI so know what you are going thru- been there thru all of it... I have changed schools several times in my efforts to help my kids- and I have also found on-line schools (I'll shoot you their addresses if you want)... This year, I have my youngest boy (who is in about the same position as yours) enrolled in a public school outside our boundries, but they have a very promising new program set up, and they'll even send a bus- so I'm cautiously hopeful, and moving on to the other boys' needs.
My only thought besides the comments above is that I approve of your focus on the well-being of the kids- just watch that whatever you do stays on that focus including the pain of your anger and/or stress- which they pay very close attention to.
Stand strond. The Lord says you can do this.