P is for Perseverence, V is for Victory, C is for Choice.

The IEP meeting- September 22, 2009.
Standing room only, 8 representatives from RCS (her current school), and one representative each from both Wachusett and Fitchburg Special Ed departments. My rejected IEP letter sat atop a pile of business to attend to as well as the development of the new IEP, and discussion of the acceptance to the May Institute from last week. The meeting was the most productive one in 10 years, and it ran over 2 hours in length. The conclusion of which is that FINALLY (after 9 months of aggressively fighting for home support services which are adequate to make a difference) the two school districts whose budget Kearney's education is supported by, have both agreed to stop making excuses, and give her what she needs. For several years we have been requesting extended school hours/ afterschool programming and have been told that the services simply did not exist. Then when Kearney started at RCS and I found out that RCS has a home consulting division, and the "unavailable" excuse was no longer acceptable, I again requested home support. This was in January of '09. After another month or so, Wachusett agreed to pay for 3 hours per month of "home consultation". Ridiculously inadequate. We were continually told that extended services would have to come from DMR. RCS and I both continued to advocate for more hours including direct services in the home (not just consultation with us). Wachusett continued to reject this and Fitchburg was not even attending the meetings at this point. Wachusett did hire a consultant to come into our homes
‘to better assess the level of her needs”. I speak about this extensively in the first several entries into this blog. This is when the recommendation for residential placement was first suggested.
This is when I began to scream about the unfairness of not providing her with any extended support services which would give her the opportunity to live successfully at home. Her right to the least restrictive environment was being trampled.

We went back to the table for another IEP meeting in July, additionally armed with my hired consultant’s recommendations for 10 hours/week of direct services in addition to 4-5 hours/month of consultation. This time Fitchburg showed up at the meeting. Wachusett balked at the need for that amount of hours but was still in favor of residential school. We left that meeting with the district reluctantly agreeing to 4 hrs/week of direct and 2 hours/month of consultation. This led to the rejected IEP and nearly 2 more months of waiting to resolve the matter. In the mean time the invitation to bring Kearney to the May Center came, and the shocking letter of acceptance the following day.

During this IEP meeting, Fitchburg’s representative quoted my own words and said “It doesn’t make sense for a child to go into a residential placement if we haven’t done everything possible to allow her to stay in her home community.” She further questioned “why was only four hours agreed upon at the last meeting?” And I should have stated “why weren’t you there at the last meeting (one of her colleagues had filled in for her). By the end of this meeting the “team” had agreed on 8 hours/week of direct services and 3 hours/month of consultation. They had also unanimously agreed to provide a bus monitor for her (another story for another time).

Talk about frustrating. While this was certainly a victory, the timing was exceedingly frustrating. We talked openly about this recent residential option and I expressed my uncertainty about which route would be the best option to meet Kearney’s needs. The fear of declining a hard to find residential opening and then not having this option at a later date has made this decision making process very stressful. I was honest about the fact that I still wanted to gather more information about the May center including doing some observation of the actual “home” that Kearney would be placed in. I expressed my concern that I feared the home services would be difficult to implement in two homes, and that Kearney’s Dad has not been actively engaged in her programming which would be a problem. We discussed how in home programming, much of the work falls on the parents to implement, even with direct service hours, there are still far more hours in which the parents are the ones providing the “direct service”. Certainly residential school would be the “easier” option for us, but whether it would be the “best” option for us/her was the very difficult question we were trying to answer.

So, in the end, after all of the stupid BS they put me through, hiring expensive consultants, rejecting IEPs, calling the board of Special Ed appeals,it seems that the previously unavailable home services, which then became available but were deemed as excessive and unjustified, are now miraculously acknowledged as both AVAILABLE and JUSTIFIED!

A big decision would need to be made but the reality was that FINALLY, one way or the other Kearney's education and life was going to improve! Perseverance has delivered a hard fought victory to be savored. We now had a choice to make between two viable options. It will be the most difficult decision to make but choice equals empowerment, and that is a really good thing.

Next blog will be all about the choice...

The Dark Cloud of Grief

I wanted to post an entry tonight about what I've learned so far about Residential school and how my decision making process is going.  My head continues to buzz incessantly.  I've got so much to say, but I'm almost too upset to think clearly.  Tomorrow is Kearney's IEP meeting.  This was the scheduled annual meeting in which my plan was to fight for increased home programming hours.  However, the acceptance offer which was extended to us from the May Institute last week has altered the trajectory of things and is sure to be the main topic of conversation.  This will be highly emotional and entirely upsetting for me.  I am dreading it.

I continue to become more educated about the option, weighing it against  the alternative of keeping her home with some extra supports.  I'm finally able to see that the custody/living arrangements that have been in place for the past several years are not working.  I was expecting too much from her father and the back and forth between households has not been ideal for her.   Implementing a consistent and intense home program across the two homes would never really be successful under these circumstances.  Without getting into details I will just leave it at that.  I can now see quite clearly that either I accept the May Institute placement, or I take on the full burden of home programming 5 days per week in my home.  It would be unrealistic to assume I could do this, do it well and avoid burnout.  Not to mention the toll it would take on my son, or my sanity. 

That said, I'm not ready to sign on the dotted line yet.  There is so much more info to be gathered, yet the grief of it all has already settled like a dark cloud over my path.  When I named the blog grand theft autism this is what I meant.  So much has been stolen, and I'm feeling like I'm right on the verge of losing the little bit of her that I still had.  All in the name of helping her to learn how to function in our world.  I'm beginning to accept that I can't swathe and protect her forever without limiting her growth.  We may be lucky to have this option, but it still feels like theft to me.

On Blogging; Sandbags Under the Eyes, and Moving Forward

On blogging-
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.