Thinking Back

I recently received a comment on a post from nearly 2 years ago (CSAAC and Making It Work), asking about what I thought of working with CSAAC (Community Services for Autistic Adults and Children) as they are preparing to look into their services for their son. So, I decided to write a "Way back when...." post looking back to where Rachel (and I) was then and where we are now...

I was living in a different world. Yes, I was still living in the Autism World, but it really does seem like it was different then. We had virtually no verbal language to speak of. We were getting so little sleep. All I could do was worry. I was struggling to deal with my children's diagnosis. We were still in the process of GETTING that official diagnosis. I was barely keeping my head above water at that point. And it felt like we weren't getting anywhere.

Then, we started working with CSAAC. It was about that time that things started to change. It wasn't just working with them. It was everything. It was my own acceptance of what was going on. It was my realization that this was my life and my change in mindset. It was me learning how to incorporate the parenting techniques that I was learning through More Than Words. It was recognizing that, despite being twins, Rachel and Simon are VERY different children. And it was the introduction of the intense ABA that was provided to Rachel by CSAAC.

I remember several parts of the whole "CSAAC Process" very clearly. I remember having a phone conversation with our case worker with Early Intervention services where she pointed out to me that Rachel was failing to grow in the classroom and we needed to look into something more directed (one-on-one ABA). I remember listening to her convince me, and despite not buying what she was saying, turning around and attempting to convince Kevin that this was what we needed to do. I still questioned her about it from time to time, but I trusted MCITP (Montgomery County Infants and Toddlers Program [local Early Intervention provider]) and I knew that the classroom wasn't working. I just didn't think that you could take such a rigid child and put her in an even MORE rigid environment and see her thrive. But we had to try. I remember the nightmares this caused me. I remember thinking that this was our last chance -- if this didn't work, we really didn't have another back-up plan. I was fearful of losing all of that potential in this 30 month old little girl. It literally would wake me in the middle of the night in a cold sweat. What would we do when this didn't work (I truly didn't believe it would)? But I knew we had to try....

I remember meeting with the psychologist at CSAAC and watching her evaluate Rachel (and Simon who, of course, came with us). I remember her telling me that it would take a while before Rachel would be a willing participant with the program (expected up to 2 weeks). Until then, she warned me that she would SCREAM and fight the process with everything she had. I remember struggling with our schedules, trying to find 10-12 hours weekly, in 2 hour blocks, working around naptimes, where I could be home so the sessions could take place. Daniel was in nursery school 5 mornings/week, Simon still had school, we were just joining the Parent Group, and anything else that came along.

And I remember the first clinic session after we began. We had a clinic session just before starting so the techs could meet Rachel and they were able to tailor the starting points of her programs to her current levels. I watched her growth in just 2 weeks. I saw her happily go to her teachers knowing she was going to play games and see her favorite motivators. I watched her look into their faces with minimal prompting (except the psychologist). And those huge strides continued, session after session. It didn't take her 2 weeks to adjust to these in-home sessions. It took her 2 MINUTES. The only consistent problem she had was transitioning from break with me and Simon (and sometimes Daniel) to going back to her room for more work. I watched her learn to play with toys (correctly). I watched her understand how to communicate. I watched her learning to behave and understand some basic life skills. We even worked on drinking from a cup, brushing teeth, and wearing a blanket at night. CSAAC and in-home ABA was such a HUGE success!!!!!

That was Rachel's turning point. And in many ways, that was mine. It made me realize that when we provided her with the right stimulation and would work with her in the ways that she needed us to, we would see progress. Since then, she's been in an ABA-based program and we are starting to consider ways to transition her away from it all so that she can attend a typical school for kindergarten, even if she needs to remain in a special needs classroom. Through ABA, we have seen her grow in every possible way, and for that, I am extremely grateful to CSAAC, MCITP, her teachers, and everyone. And now that we are about to enter a new phase in her treatment (beginning to address her ADHD issues), I only hope that we can continue her success!

Is There EVER a "Right" Answer?

You see, we have a problem (what else is new?). Rachel's IEP Meeting was October 17. At that time, it was decided that she should be included in a typical pre-K class in her school to allow her to work on her social skills with her neurotypical peers. This would help her learn how to interact with others and would hopefully allow us to see her enter a typical kindergarten classroom setting at best, or at least allow her to be placed in "The Learning Center", one of the special education options for our public school system.

In our opinion, social skill development is the biggest shortcoming of the program she is currently enrolled; it is a program that is 1-to-1, highly-intensive ABA. It is a language and behavior based program. She rarely spends any time with other children with any realistic expectations of forming friendships. All of her "relationships" are with her teachers. So, by including her in the pre-K class, she would still get the 1-on-1 that the program is designed for part of the day and still be able to develop social skills. She was to start at 15 minutes/day and work her way up to the full afternoon.

It has been 6 months. She is still only attending this class for 15 minutes/day. It's not because of the school's refusal to incorporate the plan. It's because Rachel has been unwilling to cooperate. She cannot sit still and refuses to follow instructions. They have tried several different things, and they still have been unable to increase her time in this classroom. The question is "Why?"

I received an email from her teacher that we need to consider her placement. That can be read in a couple of different ways. Are they thinking that we need to change her overall placement for next year? Do they think we should modify her existing IEP? Or are they just looking for suggestions from me as to how to make this inclusion happen more successfully? This has led to me scheduling an observation visit on Wednesday afternoon, specifically to see her inclusion time with the pre-K class.

I was thinking that they may possibly be thinking putting her in a combination of programs. I mentioned in an earlier post that one of the family of preschool programs offered by our schools is called PEP. There are several different iterations of "PEP". The schools where these programs are located, often have more than one of these programs. There are children who cross between different PEP programs (I know of one who spends part of their day in PEP-INC and another part in PEP-Classic). However, neither the locations that I know of which has CAPP (where Rachel is currently) has any of the PEP programs. I was wondering if a good solution would be to combine the two programs (CAPP and PEP-INC) in the way they are currently trying to combine CAPP with the typical pre-K (perhaps she's not ready for that yet), but this is likely not a feasible option. I know that the schools are required to implement the IEP as it is written. I also know that they will not write an IEP in such a way that the resources don't exist to implement it correctly.

So, what's the right thing for us to do? When we were approaching her meeting in October, I was worried about the possibility of her being removed from the CAPP program. And I believe I was right at that time. And I'm still concerned about this. But today, May 10, is this actually the best thing for her right now? Would she be better off switching to PEP-INC? What (if anything) would we be sacrificing considering how well she learns via the ABA model?

Stay tuned.....right now, I'm not sure what that solution is going to be. Or, perhaps I'm reading too much into this meeting....