Ready for the ABA story? No? Too bad. You're going to hear it anyway. I have a serious need to rant. It's my blog and I'll rant if I want to. :P
Remember back in November when when we lost a tutor? And then Abby started having seizures again? And after that, we got two new tutors, only to have Abby come down with her mystery illness?
When the dust finally settled, and we tried to get back into the routine, Abby was unimpressed. I haven't talked about it on the blog because I didn't think I could without publicly trashing the program.
I am now going to publicly trash the program. But just a little.
After such a long interval without regular ABA, we thrust her back into the program full-tilt expecting her to basically pick up where she left off.
Let me preface this by saying there are serious organizational deficiencies in the ABA program. Several. Many. I could go on for pages about the problems we've had, from staffing changes without prior notification (I sometimes get schedules in the mail with new, random people on it), to serious security/privacy breeches, and.... oh, I'll stop there before I get too riled up.
Abby was unhappy with her "new" tutors. She screamed. She fought. Eventually, she just shut down. They would show up at the house, and her eyes would just glaze over and she'd leave for Paris or something. She would be unresponsive. Her frustration and unhappiness spilled over into downtime.
It was disheartening, and I have been on the verge of withdrawing her from the program countless times. (I would go to bed ranting, "That's it! We're done! I'm calling them tomorrow and telling them where to stick it!", only to wake up in the morning and try it one more day.) I would literally cuddle with her at night and cry because I felt so bad about her unhappiness.
After numerous lengthy discussions with our consultant (who is trying her hardest, bless her soul) and the family coordinator (who has since quit, hope it wasn't anything I said!), we changed strategies. I still feel that the tutors we had were not a good fit for our family, which is ironic because they rejected numerous candidates for positions in the FOUR MONTHS!!! it took them to find the staff. But I was willing to try changing strategies to "enhance the reinforcement value of the tutors to encourage participation".
I told them that I would make a decision about staying in the program during summer shut-down (the last two week in July leading up to the long-weekend in August), which has long since past. I am still on the fence. Things are going better, but they're not doing any actual work. They're still "enhancing the reinforcement value of the tutors" by playing with her six hours a day for the past month or so.
But things were starting to work out. Abby was happier. I thought maybe it was a sign that I should keep Abby in the program. I randomly took out a book about Autism from the library, and it said that ABA was about learning to learn. I would live with that. I wanted Abby to learn to learn.
So when a phone call came last week telling me that our morning tutor was quitting and Friday 20 August would be her last day, I was taken a little aback. "Geez God," I said to Him, "Don't send me any mixed signals or anything". But I realized that maybe this was an opportunity.
One of my issues with our current tutors is Nursery School. I had elected to send Abby to Nursery School two mornings a week to help with her socialization (because I'm not entirely convinced spending 6+ hours a day with an adult tutor in my house is going to help her learn to interact with her peers), and a tutor goes with her.
Normally in the jurisdiction where I live, I can apply to the Daycare office to get funding for the school to hire an extra ECE (Early Childhood Educator) to help Abby in the integrated classroom setting. However, the "service delivery model" for ABA is that an ABA tutor goes with the child and is their helper during school hours.
In theory, it's a great idea. I mean, she gets a helper either way, right?
There's a big, big, BIG difference between an ABA tutor who has education in the ABA way of thinking vs. an experienced, specially-trained ECE. Did I mention there's a BIG difference? I found that the tutors were lacking the prerequisite skills to successfully help Abby navigate the classroom. The feedback I got from the school director deepened my concerns. The director and I hatched a plan at the end of the school year in June to get an ECE in place for Abby for the fall.
Okay, I wrote that and realized that it sounded like we had this diabolical scheme or something. It's nothing like that. We just wanted to do everything in our power to get the appropriate staff in place for Abby for September. Just so we're clear on that point, okay?
Anyway, with one tutor quitting, I saw the opportunity. Maybe God is listening after all. I proposed to the program that we shuffle the schedules around so that I had a part-time tutor in the morning only, and I could send Abby to school two afternoons a week, which coincided with when the ECE was available. I told the ABA program that I wasn't holding my breath that a replacement tutor would be hired in the near future seeing how the last one took four months, and I wanted to fill in the gaps the best I could with what was available to me (those were my exact words, BTW).
I had already asked the Daycare office about funding, and was told that the ABA program had to basically give their blessings to my plan before they would consider my request for funding (to prevent double-dipping from the provincial pot, I understand and I'm okay with it).
I spent several days last week trying to wring an answer from ABA. Finally on Friday afternoon the big mucky-muck calls and tells me that they will consider my proposal and get back to me on Tuesday after the Big Meeting (which is today as I write this) to let me know.
Yesterday (Monday, the day before the Big Meeting) at the end of the day (because important business should only be conducted at the end of the day where no one else is left in the office), they call me to advise me that they are sending a tutor from one of the other homes in our area to my house tomorrow (which is today) for some training.
Her house is going to Kindergarten next month, so they're transitioning over to the School-Aged program. So they're sending her to my house.
And an important detail regarding said tutor-from-the-other-house popped into my head. She's six months pregnant. Which means she'll be gone on her maternity leave for a year in, say, three months?
Funny the big mucky-muck didn't mention anything about this Friday afternoon when I talked to her.
Feeling like there was something more afoot, I told the poor girl in Scheduling that I would not authorize any additional staff in my home until someone called me and explained what was happening. In detail. Thank-you.
She harrumphed and said she would see what she could do.
Guess what? Something more was afoot.
This morning, bright and early, I get a call from a middle-level mucky-muck (I guess that would just make her a mucky. Or would that be a muck?) apologizing for the lack of communication. I probably would have felt more gracious about it if it was the first time, not the fourth time, there's been a "lack of communication" regarding staff changes.
But don't worry, I was polite. Barely.
Apparently when they notified me about the morning tutor leaving, they failed to also notify me that the afternoon tutor has also tendered her resignation. Whose last day, incidently, is also this upcoming Friday.
I agreed to the pregnant tutor coming on board as a stop-gap solution to the having absolutely no staff as of Monday problem.
I wish I had an ending to this post. Right now, it's almost 3:15, and I have yet to hear the results of the Big Meeting from this morning. I need to make a decision this week. Go or stay? Stay or go? The idea of life after ABA is a little scary. We've been in the program for almost two years, roughly half of Abby's short life.
In part, my reluctance to leave the program is due to my own inadequacies. I have a track record of leaving things undone. Starting projects and never finishing. Ask my mother.
In recent months, I have asked myself: "Why do I want to leave the ABA program? Am I going to let Abby cut and run every time things get tough? Am I giving up or moving on?".
In other words, I'm worried that if I give up too easily, I risk transferring my own pattern of unfinished business to my children. But maybe we've stuck around way too long because of my own fears about having yet another unfinished business.
::long, mournful sigh::
And yet, with yet another staff change, while it will cause stress, it may turn things around for us. It might just be the change we're looking for.
::another long, mournful sigh::