A Well Kept Secret

My Dad had a lot of sayings.  Many of them politically incorrect.  But they were his sayings and I grew up hearing them, and now that he is gone, laughing at them.  If my Dad was still here I think he would describe the last month of my life as “One hell of a shit storm.”  He would be right.

 

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.”