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| our star (and only) pupil deep in thought. |
We started “Glenwood Academy” on St. Patrick’s day. It was completely coincidental, and had
nothing to do with the luck of the Irish or our hoping for a pot of gold at the
end of a rainbow. It had to do with the
timing of all of the things that were keeping us from starting giving way and
allowing us to begin.
There were things in our way that needed to be chipped away
at with a kind voice and charm; and things in our way that needed to be withstood, and pushed up
against with a behemoth force I learned I possessed but sincerely doubted was
working until they miraculously gave way.
We hired an expert in September of 2014; we delayed our
anniversary trip to meet with her. Once
we had our initial meeting, we hired the very talented (and very over-booked)
neuropsychologist who read through the 4 years of reports we had on our 7 year
old son, diagnosed at age 3. She let us
know that she thought she could help us help our son and that she was enraged
at the mistreatment, unfairness, and terrible mistakes he had suffered thus
far. We sighed. We didn’t have the ability to discuss, fully
recognize or even take the breath to repeat the crummy outcomes that had led us
to where we were. We simply didn’t have
the time or energy to go through ALL of that AND move forward with what could
help our kid. Still, she continued to
rail on about just how furious she was with the school district and how many
things they had missed in the reports she had reviewed. We politely responded letting her know that
while we recognized she was right, our primary focus was on what we could do to
help our son NOW. We’re fighters. But we try to save our energies for the
fights we think we can win (or at least land some good punches). Whether it be fighting to get our son to do
the things we want him to do (potty train, take a bite of a carrot) or fighting
the insurance company, the school district, or even just the polite, strained
fight of ignorance about Autism.
We got our report from the neuropsychologist in
January. That’s right, in the next
CALENDAR YEAR. Our pace was nowhere near
my type-A, get-it-done, super hyped on coffee norm, but that is when it finally
came. The Neuropsychologist observed
Blake at school on a few occasions. This
was, unfortunately, no small feat. The
school district has a history of giving the run around to outsiders, and the
ability to communicate between the doctor’s office and the school was
laughable. A carrier pigeon on Xanax would
have been more effective. Luckily, I had
anticipated this and had already kicked off the school year in turbo suck up
mode. I was the room mom. I was a co-chair for the PTA art contest that
the principal really wanted to have run, that no other parent wanted to help
with. No, my son is not a savant
artist. No, there weren’t any
submissions from his special day class.
This was pretty legitimate selfless (ish) volunteering as it had no
direct benefit to my son or anyone in the special needs program. It did however make me look like a very
charitable person and ingratiate me to the principal. I had also signed up and run for the School
Site Council, a parent/administration council that met a few times a year to
discuss the wellbeing of the school. I
was picking up jobs no one wanted all
over the place and it was only the 4th week of school. All of the ladies in the office knew my name
and I think that helps when you’ve got a kiddo who is harder for others to
understand. Lesson #4,356 : Sucking up
usually helps.
After fighting to get the school observation done, haggling
with our in-home behavioral therapy company to get the in-home therapy
observations done, and haggling with the neuropsychologist to get our report
completed, we finally had our results.
According to this expert, our son was not mentally disabled as the
school district tried (but failed) to convince me, but in fact he had an IQ in
the normal range. If he were to continue
with the school district, it was the opinion of the expert that he would likely
continue to regress in the school environment. As a parent, and advocate for your child
who can’t advocate effectively for himself, you’re relieved to hear IQ results
that match your own suspicions, inklings, or even pipe dreams. And then in a millisecond - you’re absolutely
terrified and wrapped in paralysis of what to do next. I had shopped all of the Autism schools in
our area, none would be a fit for our son.
We needed a school that doesn’t exist.
What do you do when what you need doesn’t exist? You create it. The final recommendation of the
neuropsychologist was that we create what we needed by homeschooling Blake with
the help of ABA therapists, an educational therapist, and a speech
therapist. She recommended the three
trade partners she felt would be best, and I started working to get all of the
paperwork completed to get them started.
The ABA provider she recommended would probably have been fine, but our
son was already making progress with his in-home therapy team. I reached out to the owner, and they were
game to try and help create our new school.
I fought our health insurance company for 2 months to get approval for
the ABA hours we would need. The blue
shield hold music will be forever etched in my mind, but the huge answer to
prayer of actually getting the hours approved felt like an INCREDIBLE
victory. It went from seeming like
there was no chance at all to actually happening. So similar to this autism world; it was not gradual,
it was not linear, and dealing with the insurance company felt like I was
living in the novel “Catch-22”.
After 60 days and endless frustrating hours of hold music,
dropped calls and obscure responses misdirecting me throughout the insurance
chain, we were miraculously approved for 40 hours of ABA per week. MIRACLE.
That was the hold up. Once we had
those hours, we could get started.
I after individually meeting with the team and coaxing them
into starting on this exciting (and crazy) journey, I started to work to
schedule a meeting with our new team. The
educational therapist had been meeting with our son and me during the time I
was fighting to get the insurance coverage.
She was ready to get started. The
speech pathologist was ready, and with the insurance approval, the ABA company
was finally ready to move forward. I
scheduled a meeting with the team: ABA supervisors (2), educational therapist
(1), speech pathologist (1), ABA company owner (1), ABA therapists (2) and one
crazy mom (1). I had a lunch provided, I
had an agenda, and I gently kept people from talking too much and taking up too
much time. We started school 3 days
later. I went to target, I went to
Lakeshore, and we built a desk and chairs from Ikea. We were as prepared as a team of people who
had never started a school could be.
The ABA supervisors and the educational therapist met for
hours over the weekend prior to our first day of school to figure out the
details of the lesson plan and materials.
It was a mess, but it was ours.
Next, I withdrew my son from the public school and registered our
private home school online. When filling
out the paperwork, it was humorous to acknowledge that I was the Administrator,
Principal, Secretary and Administrative contact. There were no other names. The responsibility of Glenwood Academy rested
with me.
In order to teach a student who doesn’t know how to learn
how to learn, we started with the basics and went from there. We adapted our internal communication and
tracking multiple times. Ultimately, we
landed on dividing the therapy hours up into 15 minute increments, assigning
subjects to the time period with majority of the time being split between Math
and English. I divided each subject and
corresponding materials into bins to ensure we kept track of all of the
learning tools. And to keep them from
being strewn around the house by a well-meaning sister, dad, cousin, or
babysitter. Each subject bin had a
binder with the lesson plan for the week and data sheets for the therapists. We found a way to write out the lesson plans
in a goal format that could be understood by the therapists, maintained the
integrity of the goal, and allowed the therapists to take data on the
outcomes. We added, subtracted, and
ultimately simplified the lesson plan to the level our all-star student could
tolerate. And we met. We tinkered, we emailed, we took notes, and
adapted as we needed to. The supervisors, the educational therapist, and I
started out meeting bi-weekly to start to review what was happening and ensure
that what we had written on the plan was actually happening during the
day. At these early meetings, we were
still evolving our lesson plan format, and what we were trying to teach. We had to spend some time figuring out what
Blake knew and what methods he could learn from. We also had to spend some time building report
and getting Blake motivated to learn.
Once we started closing in on the format for our lesson plan
and we started to produce consistent data, we were able to review the data and
it revealed what we had suspected. Somehow,
in all of this mess, with this herculean amount of thought, time, worry, and
work, we were actually making progress. Progress that we could actually prove. Once
we refined this part of the schooling, I realized, we really needed to meet
with the actual therapists and all agree on how the goals were being
presented. For a kid who has hard time
learning and understanding things, it’s imperative that each trial be
similar. The data the therapists took showed
us where there were inconsistencies in the outcomes of trials and we needed to
agree on our “how” for each goal. The
meetings with the therapy team worked.
The therapy team seemed more at ease; happier to be sure that everyone
was presenting the same information the same way, eliminating confusion among
therapists and for our prized pupil. There have been plenty of opportunities
for frustration. Especially for a
type-a, wannabe perfectionist parent. For a few weeks, my slogan for our school was:
“Glenwood Academy, we don’t do ANYTHING
the easy way!”
But I had to keep reminding myself that we were making
progress. We were already further along
than I had expected. I had to focus on
the success and the progress we were making, not on the fact that therapists
weren’t doing something because they didn’t know how to do it and didn’t take
the time to ask about it. During the
meeting with the therapists, I brought up the fact that Blake historically had
responded well to video modeling. In
light of the issue we were having keeping trials consistent; we realized video
modeling could be beneficial not only to Blake, but also to the therapy team. The
next week, we started taking video of different goals and sharing them among
the team. The video became extremely helpful
to the therapists and supervisors, our supervisors were able to show side by
side videos of our star pupil, and the progress he had made was
astounding. We now had another way to
show even more undeniably how much progress we were making! I shared the video with family and was able
to actually show what in the world I had been doing. It was a special watershed moment. There were tears among many of us, seeing
this boy who had struggled for years to speak to us - working successfully on
academic goals. Then we realized this
was a violation of some law somewhere so we had to take the video down. Because really, why would anything be
easy?? Now, we are working on a way to
share the videos without breaking any laws, but are still on a high from
getting to watch Blake be successful.
The speech therapist that started out with the program
wasn’t a fit. She was incredibly
talented, but was looking to work on things with Blake he wasn’t ready to work
on and he didn’t like going to her office.
After the 2nd time he scratched (and drew blood) the
therapist while we were there, I decided I had to put a hold on speech. It wasn’t a fit for him, and if we created a
school for him, why wouldn’t we fill the day with people he could work
with?
We also have outings.
We’ve gone to local places; we’ve done field trips at a business, and
even tried to incorporate OT, science and cousins during this time. It’s a moving target, but that is fine when
you’ve created your own school. And
booking an outing for one pupil doesn’t require a lot of leg work. When we go on outings, I take pictures on my iPhone
and upload them to my computer to create a book that I print out and staple
together. This way, our one student can
have continued exposure to an event to (hopefully) better understand it, and
the language used to describe it. We
tried science experiments in the beginning, but we’re not ready for them. They are still a bit obscure, and Blake doesn’t
understand what it is we want him to “do”.
A lot of this home school is looking at what you want to
teach. Looking at it from the end
result, from the top, from the bottom, looking at it backwards, and in any
direction that will point you to coming up with a way to teach it that your
child will engage with. We use
educational supply stores, Lakeshore, Amazon, CM Educational Supply and
anywhere else to find tools that we need to help us help him learn.
I hired an Occupational Therapist to come and observe
bi-weekly for an hour and he gave us the idea of using Crayola Color Wonder®
paper and pens with WikiStiks® to work on handwriting with Blake. He wasn’t pressing down hard enough to show
a mark on the paper. Stroke of genius--- pause for clever giggle here. Blake now is writing with more ease and is
working on his 3rd letter and 2nd number. Before we left the public school system,
during his progress report, his Occupational Therapist told me not to worry
that he was showing no progress on his
handwriting goal because many students now can just type a letter x as their
signature for later in life. A
professional told me 6 months ago essentially; “Don’t worry mom, your kid may never write, but he’ll be okay.”
I’ve purchased a ton of expensive things that we haven’t
used. I’ve created letter cards on my
computer, and use a lot of Velcro. In
today’s world with a printer and a computer, you can pretty much create
whatever tool you want to have for your kid, but it doesn’t hurt to have a
laminator or an ABA supervisor who will help you create what you need. This school isn’t perfect. But it is working, and truly, that has been
the most magnificent blessing we could have asked for. My greatest fear when we started this
was: But what if we do all of this, and
it STILL doesn’t work? At least, our son
has been happier and able to learn during this time.
It’s a lot of work (and I’m not even doing the
teaching). I make food for the
therapists, and offer them coffee and water.
I want them to feel comfortable in our home, and I really want them to love their job.
We have already had our first therapist quit, which was disappointing,
but something we have to constantly be ready for. I try to treat everyone on the team with
respect, and appreciate that they are all working harder than usual to help our
son. So that is what we’ve been up
to. This is a brief (for me) wrap up of
what we’ve done so far. I could go on for hours about the specifics, or the
concerns or the solutions we’ve encountered.
About the benefits of being so intimately associated with our son’s
school goals that I am able to constantly find opportunities in our day to day
setting to continue the learning. The challenge of not having enough social
opportunities, or art or music, or the thousands of other concerns about what
Glenwood Academy isn’t.
I wouldn’t recommend this to anyone whose kiddo is doing
well in school. I walk by our public school and feel jealous that our son can’t
learn there. But at least I know we are
doing the very best we can for him, and that he is making progress. I don’t know what lies ahead for us. My dream is that someday he is able to live
on his own, have a friend and a job and a happy heart. But if doing all of this doesn’t change his
outcome or his path, at least I can take solace in the fact that we tried our
absolute best.
As a list maker, this epic post truly wouldn’t be complete
without the following. Below, please
find my list of ideas, tricks, or random things we’ve done that have worked for
us.
·
OT
o
String a ribbon through a whiffle ball and hang
it up, give your kid a racquet (the bigger the better) and have him practice
hitting the ball.
o
Bouncing:
Get a peanut ball, a Swedish ball, and a trampoline. Bouncing input has been very effective for
our guy to calm down.
o
When it’s hot outside, spray down your
trampoline to cut out static.
o
Jump from dot to dot (or chalk square to chalk
square)
·
Writing
o
Crayola®ColorWonder paper and markers
o
Whiteboard/Chalkboard easel
o
Put paper on a 3 ring binder to create your own
slant board
·
Routine/ Random
o
Try to go for a walk around the block in the morning
before the day starts
o
Get a copy of the music played at school (if
there is any) and play it in the car on the way to school. If no music played, ask the teacher for the
songs and sing them.
o
Talk through simple steps of morning routine in
clear, succinct phrases. Sometimes being
quiet (not always my specialty) allows your kiddo time to process what you’re
saying.
o
Try to do the same thing every morning in the
same order
o
School / therapy materials should be organized
and labeled. They should be put away
when school or therapy is complete.
o
Take pictures of the routines you’re trying to
teach, print them out in a word document with simple phrases, and create a book
to read together.
Here is a sample of Blake's number writing last week:
