We had a diagnosis and we received recommendations for treatment in the promised report which were very specific and detailed. The most important recommendation was for her to have an ABA program - Applied Behavior Analysis. In a nutshell, ABA is a way of teaching that breaks large tasks into teaching small skills, and has a system of positive reinforcement along with taking data so it is clear when a skill has been mastered. This was the first time I felt there was a clear way to teach RJC and it made logical sense to me. In preschool, she was in a "play based program" and when I asked if RJC doesn't "play" how could a play based program be effective, I received the standard "this is what we do and it works" sort of answer. I was not seeing it work for RJC and was thrilled to find there was another way of teaching that would be effective. The problem now was how to get the school system on board then how to find somebody who could run an ABA program as well as train the school personnel.
At this same time, I had already seen a home ABA program in action, and knew in my heart of hearts that this would open up her world. I had given the school this report and they were aware of ABA but it was not widespread in our state at this time. Somebody thought there was a program at a neighboring school system and we made an appointment to see it. I went with somebody from our school to visit, and it looked much like the home program I had seen. At this school their students were in an ABA program for half an hour each day. We were leaving this school when the person I was with said that she thought we could implement this for RJC. I was thrilled but said that the one change we would need to make is that her program would need to be five hours. "Five hours a week...we can definitely make that happen" she said. "Um...I mean five hours a day. Then I can work at home with her as well and we could get close to forty hours a week of an intensive program." The poor lady literally fell into a nearby chair. She sort of weakly said, "We can look into that." I however, was practically dancing out of the school as I felt we were on our way.
No big change comes quickly or easily however. To the school's credit, they worked incredibly hard on a daily basis to try to find somebody who could run her ABA program and who could train the teachers (and me) as well. Finally, a call came from Rutgers University. They were willing to have somebody oversee her program and come train school personnel. He would come to CT from NJ every six weeks or so, and would be available by phone and email as problems came up in between. While this would certainly not be considered ideal in today's world, it was like the heavens had opened up for us. Looking back, I was probably too self involved and stressed to appreciate the hard work that the school put into finding somebody to do this (and I iwll never, ever forget the woman who pulled this all together for us). In reality, this moment was a life changer not only for RJC but for our family...we just did not know how much so yet.
Our Rutgers consultant came to CT and gave us all some training. I remember two things about this time. First, RJC had no clue what was going on. Quite suddenly there were demands put on her that she couldn't grasp and she was struggling to understand what we wanted her to do. What were they trying to teach? "Come here." That was it. We wanted to say those two words and have her walk to us and sit down in a chair. This was an important skill to have so we didn't need to chase her around the room trying to wrestle her into a chair so we could start her ABA program. Trying to teach her what those words meant was torturous. She had no clue. I was hiding behind bookshelves watching the consultant with her, and she was upset and crying, and I was upset because she was upset. They stopped for a break and the Rutgers consultant came over and started to say, "So that's going quite well" when he realized I was sobbing and the poor guy was trying to explain that really, once she gets it she'll be fine and she'll be able to learn all sorts of things. I was thinking "What have we done? At least she was happy in her classroom even if the learning thing wasn't really happening." The second thing I remember about this visit is that I asked him what he thought about her future - would she ever be able to talk or communicate effectively. He replied with complete confidence that he thought she would be the type of child who was very visual and would work great at some point with a written lists of instructions. I took it in. I thought he was crazy. How was she going to learn to read if she couldn't understand what we were saying to her verbally? I really thought I had made a big mistake in wanting to implement this ABA program. Luckily...I kept that thought to myself.
It was an amazing time. They had no room in the school for her to have a room alone to work in, so school personnel set up space in a ladies room that wasn't used. It was already April so they only had to do this for a few months. She did catch on to "Come here" followed by "Do this" (an imitating program). This was the basis for learning to come...and it did indeed come. Through ABA she was able to learn all her letters - uppercase and lowercase - and truly miracles of miracles - words. Granted, we are not talking sentences. We are literally talking words. But the words came. The school personnel were so invested and again, looking back, I did not realize how truly lucky we were. They went so far and above what they needed to do in order to make this not only a "good" ABA program but an excellent one. Everyone chipped in ideas, spent money on reinforcers (and probably their own money out of pocket) and eventually set up a room with a one-way mirror for observation. In all of our school years, I remember this as a time where we were truly all working for the benefit of RJC - no egos involved. As parents we were invited to trainings and our questions and thoughts were totally accepted and encouraged. We could see RJC's progress both on paper since the data was strictly kept, but also in our day-to-day lives. How cool is it to have your child say "cookie" for the first time instead of screaming on the floor because you have no clue what she wanted? Even better...she understood "mommy" and "daddy." We were people with an official label. Beyond cool, actually.
Lots happened over the elementary school years. ABA was becoming more widespread and a parent group was started to support parents who had ABA programs (I was eventually asked to join the Board of Directors and continue to be part of the Board today). A consultant actually moved into the area so we now had somebody who came on a weekly basis, and during a crisis on a daily basis. Funny story about that change of consultant actually...wish I had time to share it. In any case, over the elementary school years we watched as RJC's life changed and our family's life changed. We used ABA techniques to potty train (talk about life changing), walk without bolting (yes, another like changing moment - we could take her to the grocery store), and to sit in a restaurant without needing to be crammed into a corner of a booth or shoved into a highchair well past the highchair age days. Her language skills were improving and though scripting from Barney was and still is, a huge part of her communication pattern, it's verbal and makes sense. She learned how to spell (she's probably the better speller in the house since that really is a visual learner), how to brush her teeth, how to take turns...so many lifeskills were taught in those years through ABA. Most importantly, she learned to generalize these skills so she was no longer working 1:1 by herself, but could take part in a classroom. She was never able to catch up to her peers academically, but she could socialize(ish) and work on art projects or go to the gym with typical students. She had one of the best teachers I've ever been lucky enough to have for RJC during those elementary school years, who was willing to work with and take suggestions from the ABA consultant. She also had amSpeech and Language teacher who was willing to learn new techniques to best be able to help her communicate. Super important during this time were the paraprofessionals who worked with her on a 1:1 basis. We were sooooo lucky that year after year, from preschool through fifth grade, she consistently had people working with her who learned ABA, followed through with all that needed to be done and truly cared about her at all levels.
Middle school. Ok, I just can't go there. Suffice to say we call the one year she was in middle school "The Year From Hell." It pretty much says it all. It was the year she started to literally go through our walls. It was the only year we felt a need to try medication (big, big disaster for her though I am well aware it is excellent for others). We tried so hard to get her outplaced to a school we knew would work for her, but outplacing students costs money to the school system. I personally always felt there were ego issues involved in the decision to keep her in the school system as well. Then came THE day. I was driving my mother-in-law to New Haven for a luncheon where she was going to be the honored guest. It was a big deal and I was so happy to be going with her. I received a call from hubby that there was problem at the school with RJC and they called the police. As in 9-1-1. This was a problem. I couldn't abandon my plans with my mother-in-law, not to mention that we were an hour away so turning around would not accomplish anything. I gave my husband a pep talk and told him not to let anybody take her anywhere. I even promised to bail him out if he got arrested for interfering (what can I say...I say stupid things in emergency situations). He kept me posted by phone and while I don't think I ever got the entire true story of what happened, two wonderful things did happen. Wonderful thing one: she had calmed down enough so that the police did not need to enter the building. I have heard since then that her coach from Special Olympics was very instrumental in getting things under control, but I've never been told the exact details of that day. Not that I didn't try to get them, but that's a whole other issue. Wonderful thing two: she started in her outplacment approximately four days later. Thought it took months for the outplacment school to get her back to where she was able to learn, they did it. We've had an amazing ride ever since in terms of her education.
So...since that day she's been going to the same outplacement school and in terms of her education we hit gold. Truly. There is nothing better than sending your child to school knowing she is both safe and learning. She goes out in the community for both work opportunities (very basic work) as well as social opportunities. The entire school is set up for her to be as independent as possible. It's like a different world.
And now...we only have one more year in this environment and then...well..I wish I knew. I'll share our experiences as they happen - so stay tuned with this blog!
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