April 11, 2012


we were recently in california. and it was not for a holiday. we try to do a few fun things while we are there but it's no holiday. it never is.

waiting in the airport terminal
this was the first trip i've made in 4 years with no iv meds in tow. it was awesome to be able to travel light(er). actually, it gave me plenty of extra room to pack parker's text books and work books. he was not impressed. he got no break from school over spring break and no break while we were down south. which sucks. i agree. it sucks for me as the teacher just as much as it does for him as the student. i would have loved a break just as much as him (maybe even more!) but here's the problem, since his IV treatment was forcibly stopped, not only has there been an intensifying of his physical disabilities and pain but his cognitive abilities have significantly suffered as well. 

it is as if his brain walked out the door. it has been like pulling teeth to help him comprehend and tackle his school work. certainly, the trauma that befell us on feb 3 when the attack began, threw us into an emotional tailspin. to put it bluntly, all hell broke loose. the sheer fear and shock of it all knocked me out of commision as a teacher for several weeks.  it's awfully hard to focus when you are terrified your child is about to be ripped from your home. and about the time i was able to gather my wits about me, parker had been without IV long enough that the full weight of the consequences of being without it were bearing down on him. 

that has been maddening. frustrating. upsetting. etc. in term 1 he was able, thru hard work and determination, to accomplish so much. he successfully completed all 4 core subjects. his accomplishments amazed his distance ed teacher - (as blogged about in "school of hard knocks" post) and he was meeting the expectations of all 4 core subjects. the longer he was on IV treatment, the more his brain came back to him. it was not such a struggle to concentrate or to retain information or to stay awake. and as the months went on and his stamina increased, he was able to work independently and for longer periods of time. it was exciting to see the improvement. it was not without great perseverance on his part - there were days his pain levels were high enough to require the intervention of morphine - and yet, even then, he soldiered on. 

this term, term 2, started strong but once his IV treatment was turned on its ear we barely limped across the finish line. i watched with helpless despair as his brain was hijacked by the infection. he's fought it, he's worked at it - and the pay off? he's aware he's not getting it again which results in tears and pencils snapped in half. last week, we had our term 2 wrap up meeting with his distance ed teacher. her comments reflect the change, "he is working towards meeting expectations. despite set backs, his attitude towards his studies is to be commended."
working hard on ancient greece project
(the lack of shirt has to do with body temperature dis-regulation)

his tutor and his OT (occupational therapist) have also noted the recent decline.

now spring has sprung and with it term 3 has begun. i sat down with the distance ed and resource teachers this past week. we're having to re-vise my son's IEP (individualized education plan) and on everyone's mind was what about next year? grade 8. 

of course, my son desperately wants to go back to a public school. yet, he knows and we all know that it is highly unlikely that he could physically meet the demands of a 6 hour school day.  let alone, cognitively take on a full course load. so what does one do? it would be ideal if we could integrate both the public and distance ed programs. (eg - he could attend public school and do a course there and do the rest of the subjects at home.) unfortunately, this is not an option because the distance ed school is not in our city/school district. students can't be enrolled in 2 different districts. unfortunately, there are no distance ed programs available in our district and there appear to be few workable options period. that is why we are currently enrolled in the program we are now. our school district literally shoved us out the door with a, "sorry, we don't have resources available to support your son." which was followed by the suggestion that he attend school in another city. we've been told we'll need to fight this at the school board level in our district. like i needed another battle on my hands.

we live in the wrong city for educating our son.

we live in the wrong country for securing medical treatment for our son.

i'm so frustrated with running into road blocks. some days i feel like i have to fight at every turn in every area of my life. and i'm tired. so. very. tired.

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