We started ABA with The Don back in July. He had a different nickname back then. We started off with a small group of tutors. I had written in past posts about who my hands-down-favorite was, but near the end of last year, I realized that more people were reading my blog than I had originally anticipated...
...So I decided to edit those parts out and censure myself.
|Shame, I know.|
I have also been witholding *a lot* of information from you guys.
(In hindsight, I shouldn't have, because I would probably have come to my senses a helluva lot sooner, had I been able to read the comments that some of you might have left. Good thing about blogging, you get *so much* information that way.)
In an attempt at discretion and diplomacy, I have said very little about the nitty gritty within our program. I have kept any problems and concerns I may have had out of this blog.
The only thing I have shared is about how well my son has done under a Verbal Behavior ABA program:
The Don went from being (and staying) pre-verbal throughout 18 months of "therapy" (some 'eclectic' bullshit play therapy and barely any SLT at all. He got seen 3 times in 18 months by the NHS SLT, and we were only able to afford to pay for a private SLT to come in once every month or two), to having two months of VB/ABA by September last year after which he became fully verbal (if still speech delayed).
I have done as much work as possible with him throughout, but not having the right techniques/strategies etc to help him with somewhat hindered my efforts.
That is why I recently started a Behavior Analysis Course.
Some of you may know that our lives have been slowly but surely disintegrating since last September or thereabouts.
And not just when The Don started school. Before then.
Some might say things really started to get desperate for us when The Don had reached three years old and had yet to produce any significant speech. Having read a lot about Chomsky's theories on language in college, and attended a few video lectures, I had started to worry if perhaps my son's window of opportunity for language acquisition might be closing.
Anyway, the Bubs and I were talking about it last night, and he reminded me how I've been talking to him about being really unhappy regarding certain program aspects since pretty much from the word go. Some people were disorganized and flaky at best: always committing to a certain schedule, then backing out last minute with barely an excuse to offer.
This whole "ABA" thing has been a huge learning curve to say the least.
- I have been desperate for qualified ABA tutors and (like all things Autism related) we are living in the dark ages over here.
- I have never been an "employer" before.
Had the Bubs not reminded me last night, and had I not gone back to look through my emails from May-August of last year, I probably would have forgotten about how riddled with problems it was from the word go. (Also, I've been so busy defending it, having seen the results, that I may have been fuzzy on the details since I was so focused on looking at the big picture.)
Thing is, we had no other alternatives.
I knew some of the people on the program had other issues in their lives which is why I was more understanding the first couple of months, but I had been assured by certain people that the program would start getting serious by September 2011.
- I have emails from some team members from as early as March. We were only able to start scraping a program together by May.
- I also have a number of emails from as early as June/July where already the pattern of continually apologizing for missed sessions commences.
- The actual sessions started in July (though there was a lot of pairing, training etc done before then). I received emails from other team members in May/June assuring me that they would be more dependable starting in September.
I called people multiple times to complain about this, but bottom line: ABA tutors are impossible to find!
Although I was able to find a couple of substitute tutors here and there, there was never a point in the program where all the hours were covered. (And that was without factoring all the sessions that people of the flaky variety were continually missing).
Fast-forward to the end of last year, and things were getting pretty ridiculous. Things didn't improve despite training in early February and then again in late February. Bear in mind that The Don had been out of mainstream schooling since early December. The sheer number of tutoring absences would have been laughable had the situation not been so serious. (We are, after all, talking about a young boy's care.)
What good is an intensive therapy if it's not intensive?
The Don is pretty sociable guy. He might have "language delays", "inappropriate behavior" and "communication difficulties", but after getting over his initial shyness he usually loves meeting people (and having a new audience!)
He can tend to stay stand-offish with certain people (don't we all? I also think his bullshit detector is finely honed) but he usually gives his own style of love away like a rainbow-happy leprechaun.
There is whole lot more to this story than I feel comfortable disclosing online, but let's just say that without consistency, The Don will not learn as effectively as he could. (I know, shocking.)
- He started showing problem behaviors within sessions (something he'd never had to this degree and which started interfering with his learning since a significant amount of session time was being wasted due to behavioral concerns).
- The program materials themselves were not being properly looked after, with things frequently lost or damaged.
- I noticed a significant increase in his rote responding as well as other stimmy behaviors (that seem anxiety driven).
With The Don out of school and his program stalling, he had a lot of unstructured time and very little professional one to one input: chaos ensued.
I increased my search for alternate solutions.
How did we get here?
Things have been going really horribly for us since the beginning of the year. Couple that with the fact that I stupidly signed up to do a Behavior Analysis course it turns out I DO NOT have time for because:
- The Don has been receiving a massively reduced ABA Home Learning Program instead of the more intensive schedule that was due to start in January.
- The fact that I'm having to home school him (and Betty) with negligible support.
- The fact that Betty is having an ASD diagnosis all of her very own.
- Chasing up Betty's eye operation because she's been on the waiting list for about six months now.
- The whole EEG fiasco.
I had not had time to go through the ABA file like I should have been doing. I was too trusting of the information I was given verbally after the sessions.
I corrected that little mistake the other day. I literally felt sick to my stomach when I read those Daily Reports. I knew that there had been a few issues, I had heard it during their sessions, and we had spoken about it after their sessions, but I did not know the extent of just how bad things were, with some sheets barely filled, problem behaviors not written up, etc.
The Don is a fast learner and has been flying through his targets, so I hadn't imagined that it had been such an issue because the program had continued to move forward. But...
It occurred to me that perhaps the fact that The Don is such a fast learner might be negatively affecting him in this environment. People were able to get away with shoddy practices because he was still learning. But the consequence of all this instability was that The Don was acting out really uncharacteristically, which was just truly alarming. I'm not saying that he suddenly became destructive or aggressive, but he was different enough from his usual self to cause the Bubs and I great concern.
General Statement about ABA:
Since there are no controls or regulations on who can claim to be an ABA therapist, anyone can have a few shadowing sessions, present themselves as "ABA qualified" and earn whatever it is: twice, three times the minimum wage.
All the while taking advantage of families in need, and actively worsening a child's life chances.
Moral Compass Fail
|Cause it's too late to cut a long story short!|
I know this post sounds negative with all this bullshit going on, but it's actually really positive:
We have gotten rid of the dead weight that was causing more problems than it sought to solve, leaving me with less things to stress about and hopefully more time to study for my exams! The kids and I are having a little "time-out" from certain therapies for a brief period so we can relax, unwind and shake off all the negative energy radiated by people who clearly didn't respect The Don (or us), and have a fun little "vacation" together.
I'll be able to take them out more, to different places we haven't been able to go because of the always changing schedule of his previous ABA sessions. Plus my little brothers will be coming to visit twice for two weeks of action packed fun each time!
And for me: it's been amazing.
So, so liberating not to have to deal with the same old crap anymore, a real sense of relief. A *HUGE* burden off my shoulders. I'm not even angry. I'm just deeply disappointed by the whole experience. My faith in humanity has been chipped away a little more.
I also feel that they didn't just let me down, they let themselves and their loved ones down.
I wonder how they would have felt if the tables had been turned at it was a loved one of theirs who was on the receiving end of an expensive "care"-plan delivered in such a haphazard and blasé way?
Which is not to say that everyone who had ever been on the team was terrible, just that cohesion was never found within the program. A tutor might have been extremely skillful, but unable to put in the hours they had signed up for; or they might have been really punctual, but inexperienced and ineffective. We met some great people along the way, unfortunately the lack of program/structure made it impossible to continue.
The most important thing for me to remember is that The Don, Betty and I are back on the road to more structure, stability and fun. I've been able to reduce the noise from The Don's world back down to a manageable level and change the background music to a more loving tune. It's taken us a while, but we're finally getting closer to something resembling a credible care plan for him.
Watch this space!
As for the other matter:
The Don currently has an appointment next Tuesday at our shitty local hospital to see the pediatric neurologist over there. In case anyone needs to know why that hospital is so shit, it's because:
- They tried to send me to the psych ward when I had a kidney infection in mid-pregnancy with Betty. They told me there was "nothing medically wrong with me". I ended up going to a private doctor who diagnosed my kidney infection, prescribed a host of medications to treat me, one of which was meant to help me carry my baby to term. Despite those interventions, Betty still came early. I shudder to think what would have happened to us both if we had not had appropriate medical attention when we needed it.
- They told diagnosed the lump near Betty's eye as a "lump". When I pressed them for an actual diagnosis they said "bony lump". I (again) had to take her to a private doctor who diagnosed a dermoid cyst (benign tumor) and she will hopefully have it removed (by a non-shitty hospital) this summer.
- They were the ones to give The Don his genetic testing trauma and then LOST the results.
- They're the idiots who gave The Don THREE OT assessments and could still not decide on whether or not to give him the therapy. Fortunately, after all the issues we've been having with the Council, the head of the Council's Children's Services stepped in and The Don is now getting OT, about a year after getting that initial letter saying he was eligible for it.
- A friend of ours who is studying to become a doctor thought about getting transferred to our shitty hospital for his residency, but it was decided that our shitty hospital was too ill-equipped to be of any practical use in his continuing education. (Forgive me a snarky "no kidding?")
I'm really only going to this "initial consultation" so I have a more complete list of the problems we've encountered in all the different departments of that same shitty hospital so I can give the Parliamentary and Health Service Ombudsman a full list of concerns.
The Don will also have his case looked at by the GOSH pediatric neurology unit. That only took 3 days of calling multiple times a day, speaking to many *many* different people about his urgent referral. So urgent that they will "discuss" his case at their next inter-disciplinary meeting. **facepalm**
He also has an appointment on standby in Hong Kong should the above fall through and I have also called a really good doctor (thanks Karen!) in Sacramento, CA and am waiting to hear whether having The Don in their care might be a possibility.
I really hope we can sort out his EEG in this (sorry excuse for a) country, because if we have to resort to going abroad for treatment.... I just don't know how we'll be able to make it. We're already drowning as it is.
Explaining the "love" this post is tagged with:
The Bubs GAVE UP his Sky Sports channels subscription so he could hire a cleaner to come in once a week for two hours to help me with the basics since I'm spread so thin at the moment. (The cynic in me says that he only did that cause he wants me to have more energy **wink wink, nudge nudge**)