December 3, 2011


142.5 days
that is the number of days of school that parker missed last year. the year before that (the year he got sick) he only made it a handful of times.

clearly, that is no way to get an education.

i have taken over his education and am homeschooling him.
clearly, that is (still) no way to get an education.

i am no teacher.
i am a fish out of water.

this business of full time home schooling is new this year. the public school that he has attended since kindergarten did not have the resources available to support him in the way that he needs to be supported. 

naturally, parker's case is unique. it is not something that the school has encountered before. the hourly fluctuations of his symptoms and the never knowing how he will be makes setting up any sort of structure or schedule pretty difficult.

by last spring, we finally had a plan that seemed to be working well. he was meeting and working with a resource teacher twice a week for 45 minutes each time. his tutor lisa, who has been working with him since he got sick in grade 5, was working with him once a week and liaising with his resource teacher. this was working well and for the most part, despite his insanely fluctuating symptoms, he was able to make it to these sessions. the goal was to keep up his math skills and keep him as involved and part of the school community as possible. the latter was (is) so important to his emotional well being. 

by the end of june (last year), we felt we had hit our stride with this plan. it was working well. it was written into his IEP (individualized education plan) and we were hopeful that this plan would be able to be carried into this year, his grade 7 year, as seamlessly as possible. at the end of june a meeting was set up with the school administration to finalize this plan...or so i thought. 

unfortunately, that did not occur.

to be frank, i left that meeting (end of june) feeling as though we were being pushed out the doors of the school. 

the first 60 minutes of the 90 minute meeting were spent promoting a distant ed ANOTHER school district. i was strongly encouraged to  consider and look into that for parker for this year. on one hand, it did make logical sense to weigh that as an option. a home schooling/distance ed program would provide more continuity and be able to provide some additional resources and support that the public school is just not equipped to deal with HOWEVER, in order to tap into those resources, we would have to travel to the distance ed is a 2 hour round trip commute from our home. how in the world does that make sense when he struggles to get to his public school which is literally right out our front door? additionally, if we chose to enroll him in the distance ed program he would no longer be able to participate in anything at his school. that sucked. and it seemed grossly unfair. he has already suffered so much to consider that he could lose his last bit of ties to his peer community was truly upsetting. 

the last 30 minutes of the meeting were spent on going over his IEP. i was told that the two 45 minute sessions had only been done as a special allotment for his unique situation and that it was not possible for them to continue next year. 

if no resource time was available to him, than how would he be educated given his special needs and medical condition?
no one could tell me.

the meeting kept getting steered back to the suggestion of the distance ed/home school option. i was there to problem solve and work toward a solution that would keep him IN HIS school that sits less that 200 feet from our front door. i felt like i was the only one endeavoring to do that. 

i was given no solution and the only help being offered was the vague  statement, "he will be supported by a classroom teacher. there may or may not be an EA in that classroom, EA's are not there for an individual child and there was no resource time available."

to be fair, i believe this is really an administration and district issue. parker has an IEP (individualized education plan) and is designated with a disability within the education system which means the school district is than given funding to provide support for him. however, how the district allocates those funds is at their discretion. technically, this funding should be enough to provide him with some EA support and resource time - however, the funding is given to the individual school as a lump sum. from that lump sum, the support for many students, with varying disabilities, must come from that. there is only so much to go around. i've talked with many other parents from the school who have run into this same brick wall in our school district.  

however, it is what it is. i feel more sad than mad about it and i feel bad for the teachers. their hands are tied. what i choose to focus on is the amazing support we were given over the past 2 years. parker's teacher, EA and resource teacher worked so hard to keep him involved and feeling part of the community. we are so appreciative of this. they came up with creative ways to keep him feeling as if he was still part of the school community even though he was absent most of the time. 
Parker's New Classroom
we were truly blessed by their support and ongoing efforts to keep parker connected to his classroom and classmates. that has played an integral role in keeping up his spirits over the past 2 years. it has been HUGE. the thought of him no longer having that ripped my heart out. added to that, was that this is his grade 7 year. the thought of him MISSING all that encompasses this pivotal year (grade 7 grad, camp and high school tours) not to mention the socializing and student life is hard. he's been at that school since he was in kindergarten. many of his classmates he's known since pre-school.

however, keeping him enrolled in a school that he rarely is able to attend and would have no real formal support at, didn't make a lot of sense either. emotionally, i wanted to keep him there...even the little bit he could go at least allowed him some socializing and a break from the daily regime of pills, IV and survival. yet, logically, sporadic attendance is no way to get an education. i get that. we spent the summer processing all of it and weighing the pros and cons. and of course, hoping that he would make a miraculous recovery and just be well enough to head back to school in the fall. one can hope. always. but the reality is/was that the road to recovery is a marathon not a sprint.

as we mulled it over, our greatest concern was how parker would feel about not being enrolled in his school. he was surpisingly open to the idea of homeschooling. he's a pretty remarkable kid. strong. brave. uncomplaining. resilient. and wanting to learn. and motivated to do so. and willing to let mom become his teacher.

with that, the decision was made.

i am homeschooling.
shoot me now.

parker went into it with great enthusiasm.
i, on the other hand, did not.

i had a bad attitude - my own health can make just everyday tasks challenging and we're barely treading water with the weight of parker's medical needs and now the full weight of his education has been solely placed on my shoulders. 

i felt ineptteaching is NOT my thing. so totally out of my comfort zone. i have always had a healthy respect for teachers. i think they have an incredibly tough job. i don't envy them and i don't want to be them.

i felt overwhelmed - in september, graham met with the teacher and principal from the distant ed schooling program we had signed on with. he came home with 60 pounds of books and a mountain of paperwork. i was unable to attend because i was home, bedridden with fluid on the brain. hardly the way to start my teaching career. 

i felt incapable - there is nothing like a little hydrocephalus to complicate my reticent foray into teaching but that is the way it was.

additionally, i felt stressed out. beyond help. lost. confused. dazed. panicked. helpless. crazed. terrified. woefully ill-equipped.

enter lisa.
i would have had a nervous breakdown if it wasn't for lisa
God bless lisa

lisa & parker, oct 2009

lisa has been tutoring parker for the past 2 years.
has been an absolute God send

we met lisa at one of the first lyme support group meetings we went to - way back in the early days, before the boys got sick, when it was just me starting treatment. those days are pretty clouded and i don't have a lot of memories of them. like i don't remember meeting lisa. (sorry, lisa, you know i love you and you are totally un-forgettable)

we had only managed to stay in sporadic contact in the years since we had first met - both of us consumed with surviving the early days years of treatment. lisa has lyme too. she is also a patient of DR H. i had no idea that lisa read my blog. 2 years ago, when parker fell ill and was no longer able to attend school i blogged about how concerned i was about his education. imagine my surprise then, when i got an email from lisa in response to that. in her email she offered to come once a week to tutor parker. (prior to falling ill with lyme herself, she worked as a full time teacher) we were blown away by her offer. here was someone, sick herself, who was willing to volunteer her time and sacrifice her limited energy to support us? it was mind blowing. but that is exactly what she did and has done for the past 2 years now. she continues to come every week - despite the fact that she lives nearly an hour away from us and is battling this disease herself. 

like i said, she is a GOD send. 
parker & lisa, nov 2011
additionally, she could not be a better fit for parker. lisa has lyme. lisa has bartonella. lisa has been to hell and back with bartonella. lisa gets the disease. lisa gets parker. 

like i said, lisa is a GOD send.

and poor lisa, probably had no idea what she was really getting herself into when she first sent that email 2 long years how tutoring would morph into the added job of consistently peeling the mother of the student off the ceiling. like how said mother would NEED almost as much MORE support than the student. 

i had NO IDEA what to do with the 60lbs of text books and work books that the distance ed program sent home to us. i had to fight the urge to burn it all. it would have made a spectacular blaze.

i had NO IDEA how to organize the curriculum.

i had NO IDEA where to start...except to dumbfoundly sit and stare at it all.

it would be safe to say, that i would probably still be sitting here blankly staring into air trying to squelch that burning desire (ha ha) if it weren't for lisa.

at the end of september, she came over and spent 4 HOURS formulating a teaching plan for me. using a whiteboard, she mapped out the curriculum into a weekly plan.

whenever i see that white board, i hear angels sing.

hallelujah, hallelujah, ha-lle-luuuuu-jahhhh!

it has saved my sanity.
and so have lisa's once a week therapy tutoring sessions.

term 1 just wrapped up.
shockingly, not only have we survived...but parker has thrived.

Parker's Research Project on my dad's dad

yesterday, we had a big meeting with his distance ed teacher. she was amazed at how much parker had accomplished. i concur. he decided to tackle all four of the core subjects. math. science. language arts. social studies. he successfully completed the (adapted) course work. 
he has done more work in the past 3 months than he has done in the past 2 years. yes, some of this can be attributed to the fact that he is making some progress in his health fight - primarily brain cognition - however, a lot of it has to do with his sheer determination. there have been many, many days where he has been lying on the couch in agony, on a heating pad, pumped full of morphine and STILL did his work.

he has made me look good. 
i've learned a lot.

life has handed us some tough blows.
lyme has taught us some tough lessons.
it's landed us squarely (and at times, flat on our backs) in the school of hard knocks

i can do this. 
we can do this.
we are doing this.

i'd even assert that we've had some fun along the way. it's good. it's been really hard but it's been really good too. i still have my "i can't do this" moments (every week) but then i see that white board, i hear angels sing, "yes, you can!"

thank you God for lisa.

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