I created this blog back in April as a way to help me work through what I knew was going to be a very difficult period. Since that fateful day when the first educational consultant looked me in the eye and in the frankest manner possible told me that my daughter's needs would be better served by her moving into a residential placement, life has been tumultuous to say the least. This was just the beginning of a shit storm to come. Next came a Grand Mal seizure followed by a couple of entries into the blog and I guess that was all I had the energy to enter. I felt I should know what I'm talking about if I'm putting my words out there for the world to read and quite frankly I was so confused by the whirlwind of emotions spinning in my head that I didn't have a thing to type that I thought would be helpful to me, or anybody else. Well, today I am still dizzily whirling but maybe that was the main point in starting this blog to begin with. To whirl less, focus more. Talk (type) it out, draw conclusions, change them later as needed. I have a right to change my mind after all. Which is exactly what I have always done, and might be doing again.
On Sandbags-
Anyone who knows me well, knows that tears flow unabashedly from my eyes. Happy tears and sad alike, I cannot hide my emotions. This morning I awoke to find the most ridiculous and obtrusive puffs of tissue jutting out from beneath my eyes; the objective proof of the subjective pain that permeated my Saturday evening at home alone without my children, as I contemplated the idea of a future with Kearney living away from us, and her home. As I type, have to strain my eyes to see the computer screen because these big puffy sandbags are seriously obscuring my vision.
On Moving Forward-
(And, Is it Possible that undying love and commitment can mean admitting that keeping your child at home in her loving home, is NOT what is best for her future???? )
So, here I pick up where the blog left off months ago....
The second educational consultant, Dr. Frank Robbins, did his evaluation 3 weeks after the first, (school district hired) consultant visited us. This one I hired myself in an effort to elicit a strong recommendation to the school district that they needed to invest in a solid home based after school program for Kearney. Having been hired by me, and knowing what I wanted from him, he did do this. However, he was also forthright in telling me that in his experience, though it can be done, it is an extremely difficult thing to implement a well coordinated, effective home program which is adequate in intensity and consistency needed by a child with such complex and demanding needs as Kearney. In home programs, even with excellent support, much of the intense work effort falls back on the parents and in this case it would fall onto two parents who are divorced and living in separate homes. Implementing a consistent and intense educational/behavioral program across 3 environments (school, home#1 and home#2) would make an already very difficult endeavor even more challenging. He told me that it would not be a bad idea to go look at residential schools and to agree to let our home school district mail out referral packets on her, since appropriate openings can take years to develop, and since we do not know if in a year or two this will be a necessity given the trajectory of Kearney's development and behavioral ebbs and flows thus far. OK, that sounds reasonable I said. We will go back to the IEP meeting, demand the 10 hour/ week home program that I desired, and agree to let them send out the referrals for residential in case that was needed in the future.
At the IEP meeting the school district balked at giving her an appropriately intense home program. We were told that if she needed such a high number of hours of service at home then what she really needs is Residential school. In the end they only agreed to 4 hours/week. This didn't begin until August, two weeks before school vacation. I sent the IEP back as partially rejected with a letter stating that I wanted the full 10 hours as outlined in Dr. Robbins report. In the meantime we went through busing hell after Wachusett cancelled it's contract with McArthy bus company and we lost an excellent and dependable driver. They signed on with Van Pool and our experience with them has been ridiculously bad (that warrants it's own blog post really), and we've already had more than our fair share of busing nightmares given the drunk bus driver incident of 2006... (again, another blog entry is required on this to adequately convey the frustration.)
While waiting to see what would transpire with the Board of Special Ed Appeals and then Kearney's upcoming annual IEP meeting and during K's busing hell, we were offered an appointment at the May Institute to tour their program and were asked to bring Kearney in to be screened because they were anticipating having an opening that they felt Kearney would be an appropriate candidate for. WHAT? First, I though that the May Institute was like NECC and did not have a chance of EVER having an opening for a student who is from outside of their day school. Second, it had only been several weeks since the referral packets were sent out when we were given this appointment. Third, they were saying that the opening would be available as early as October 1 of this year. WHAT? I have heard multiple stories of families having to wait years and years and years. Typically it also involved a huge fight with the school district to get them to agree to fund it. Here it seemed none of the presumptions above were going to apply to Kearney and I was in shock. For a month I dreaded this May Institute appointment. I wasn't ready to look at something that was an available option just yet. To relieve my own guilt, I felt a need to give the home programming at least a chance before having to consider anything like this.
I have to pause now to remind myself that I can pick this up where I've left off later on. For now, I leave you with the image of one of my hearts greatest joys.
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