Thursday, July 14, 2011

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!

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