Kevin and I own a piece of property on the South Hill in
Spokane, right in the middle of the city.
It’s an amazing piece of land. A
little over an acre with a nearly 115 year old carriage house to an old mansion
(that is long gone), another building that has a mother-in-law type quarters, a
two car garage with attached shop/laundry room, and more trees and foliage that
you can envision. Our realtor who has
been in the business nearly 20 years said she has never seen anything like it
in Spokane. Our dream was to someday
build a house on the back of the property that would accommodate Jackson and
his wheelchair. However, the city
recently let us know that they won’t allow us to do that. So we decided to sell our beloved
property. We’ve rented both houses out
for the last 5 or so years. Now our
renters are all moved out and we have it on the market. But after 5 years of neglecting the land and
renters living in the houses there are more projects to do than I can
count. For the last month I have spent
nearly every free second over there washing windows, cleaning bathrooms and
kitchens, painting the houses and garage, weeding, raking, restoring gardens,
mowing, trimming, and any other yard and house work you can imagine. Kevin’s been equally busy working the land
and making numerous trips to the dump with all the yard waste I produce. Needless to say I am sick of it and I still
have at least a month of work to do over there.
It’s been a big stressor. That
along with the end of the school year (why do schools wait until the end of the
year to have all of their activities?!), Jackson’s therapy and doctor
appointments, Sylvia’s band concerts and field trips, and the day to day stuff
to maintain our house that we live in, it’s been a bit much. Then one day last week a phone call just
added to the incredible stress I have been feeling and my Dad’s saying rang
true.
Unless you have a child in special education you can’t
imagine the struggle we go through to get our children the education they are
legally obligated too. It’s a well-kept
secret among us special needs parents. I
just send Sylvia off to school every day and she is safe, educated, and there
are no hassles. Sending Jackson off to school
is a whole different story. Is he
safe? I hope so. But I don’t really know because he is
non-verbal and can’t tell me. I will
tell you he comes home sometimes with bruises that I don’t know how he
got. There was a trip to the ER last month
when he fell off the changing table in the bathroom and cut his eyelid
open. But what did he hit his eye
on? Who knows? No one could tell me. Not only that, but I had to ask for an
incident report, one wasn’t written automatically after the accident. Once, Daniel got hit with a ball on the back
of his head so they wrote one up for him and called me right away. He was completely fine. But a trip to the ER and possible
stitches? No report. As far as him learning, well that is a whole
new topic. A sad one. That one entails an amount of energy I liken
to preparing for war. And really, it is
a war. A war where I have to fight for
Jackson to get an education that he is legally entitled to. I keep saying “legally entitled” and I say
that because there are laws specific to kids like Jackson. There are state laws that are generally based
on the federal law which is called IDEA (Individuals with Disabilities Education
Act). These laws dictate what, where and
how kids like Jackson should be educated.
It has protections to ensure that they aren’t just thrown into a room
and babysat all day. For example, one
that we are fighting is Jackson’s entitlement to be taught in the “least
restrictive environment”. This means
that he has a right to be taught in the general education classroom with
normally developing peers and he can have accommodations and modifications (i.e.
an aide, learning different material than the rest of the class). If he isn’t able to be successful in that
classroom then he can be removed periodically or completely into some sort of
special education classroom setting. But
in Jackson’s case, the school district didn’t do that. Instead they told me that he didn’t qualify
for general education, which is illegal.
They then farmed him out to a segregated special education classroom
where he spends 99% of his day. He eats
lunch, has music class and library in that classroom. He was never given the opportunity in the
general education classroom. So back in
February I asked the teacher and principal for inclusion in the general
education classroom. I wanted Jackson to
spend at least a little time every day with his normally developing peers. They both agreed that it was something we
could pursue. I was so excited! Finally, I thought Jackson was going to get
out of that classroom and have more opportunities to learn. I heard nothing for the next couple of months
so in April I sent them an email asking to meet again to discuss
inclusion. We set up a meeting for
mid-May. Then I got a call a few days
before the meeting from his teacher asking to move the meeting to June. I reluctantly agreed, it was a little late in
the school year to meet but I was really trying to be cooperative (kill them
with kindness!). Then she mentioned that
a school district special education representative would be at the
meeting. At first I was happy to hear
that because I thought we were really going to make a plan for inclusion. The next day I flew to Seattle for a meeting
and as I flew over the beautiful Cascade mountain range and Mt. Rainier I
started to question what this meeting was really about. For some reason, I just had a bad feeling. Later that day I called the special education
director at the school district who has been a driving force for me this past
year to fight for inclusion. She has been
amazing and supportive. I told her what
was happening and that I had a bad feeling.
So she hung up and went to find out what was going on for me. It turned out that our meeting wasn’t about
inclusion, instead the district has plans to move Jackson to a more restrictive
and less educational environment.
We have struggled all year with is teacher not being able to
teach him. I have allowed his educational
goals to really be dumbed down in an effort for her to figure out how to be successful
in teaching him. It’s been frustrating
to watch Jackson not learn like he should have this year. I have done everything I can to motivate and
implore her to explore various learning options. I even worked with another teacher in a
different school who knows how to teach kids like Jackson. I got district permission for this teacher to
take a half day out of his classroom to come to Jackson’s and work with him and
his teacher to come up with some learning goals. His teacher was receptive to this and has
even implemented some of the goals. I
can tell they have been beneficial for Jackson.
About a month ago we met for our parent/teacher conference and Jackson’s
teacher said she didn’t think her classroom was the right place for
Jackson. She then said to me “You don’t
really think Jackson will ever write his name or anything do you?” I couldn’t believe it. I told her that nine months ago I would have
never imagined Jackson walking on his knees and me having to buy baby gates for
my house. But yet, he is and I did. I have no idea what that little monkey is going
to do in a week let alone a year. So I
told her “I’m not going to write my kid off in Kindergarten.” Which was apparent to me she was doing. While I don’t think her classroom is the best
one for Jackson, I know for sure that this placement the district is suggesting
is absolutely NOT where Jackson should be.
The question is whether or not we can find a solution.
As if having a child with disabilities isn’t hard enough, the
school districts want to fight parents on every little thing. Why?
Because it costs them money.
Inclusion costs money. Having an
aide costs money. Accommodations cost
money. So they break the laws and deny
our children services simply because that is what they have done for years and
have gotten away with it. Fighting a
school district or reporting them for violations is expensive, exhausting and
can be detrimental to the child. More
often than not parents just give in to the district to avoid the expense. Sadly, some parents don’t know enough about
the laws and rights of their students to object. Even more upsetting is that the school
districts often count on that being the case.
It’s troubling, and it’s happening all over our country to thousands of
children and their parents. But unless
you’re in the war zone, you don’t hear about it.
When I got the call they were moving Jackson I was in the
Seattle airport waiting for my flight home after spending the day in a meeting
where we were ironically discussing new professional standards for
paraeducators in special education classrooms.
I used every ounce of energy I had left that day to not cry in the
airport. I made it to Spokane and was
able to walk to my car before the tears hit and stayed pretty much until I went
to bed that night. How dare they treat
my son like this? How dare they imply
that my son isn’t worthy enough to be in a learning environment? How dare they place my son in a “classroom”
(I use that term lightly) where every Friday is movie day? Jackson doesn’t even watch movies at
home. The only thing he likes to watch
is Seattle Seahawks football (yup, my kid is awesome!). It took a couple of days of tears and sadness
on my part to rally. Rallying I am. I have probably spent 6 hours in the last
week reading the law (both federal and state), preparing our argument with documentation
to back it up, creating and writing an education vision for Jackson with Kevin,
and calling, meeting and emailing with district representatives to discuss district
procedures and operations. I met with one
of the district reps this week to discuss Jackson and implored her to begin thinking
out of the box. After all, Jackson has
always been an out of the box kind of kid.
I’m not done yet. There are still
more hours of work ahead for me before we meet.
I’m exhausted but ready to fight for Jackson. If they want to mess with my kid, they are
going to have to go through me first. As
Kevin said, we will do whatever we have to to fight for our son. If we have to break the bank and hire an
attorney we will. I will not allow my
son to be treated as less of a person because he has disabilities. Jackson CAN and WILL learn. Next Thursday we will meet. Send us your positive thoughts and even
though I am not a praying kind of person, say a few prayers for Jackson. In the meantime I am hanging on to the words
of Harriet Beecher Stowe, “When you get
into a tight place and everything goes against you, till it seems as though you
could not hang on a minute longer, never give up then, for that is just the
place and time that the tide will turn.”
