Waiting for ABA Therapy, A mom’s story

Moms take thousands of little journeys with their children. I want to share a little journey my daughter and I took through the world of Applied Behavior Analysis Therapy. This is a therapy that has been honed and studied by psychologists. The research helped coined the term, ‘early intensive intervention’. This phrase can be pretty scary for parents. I know it was for me but together my daughter and I walked down the yellow brick road to Applied Behavior Analysis.

Our journey started the day we got the official diagnosis of Autism. While in the waiting room, a representative for Nationwide Children’s Hospital Autism Service Center gave us a small pamphlet on Applied Behavior Analysis Therapy what came to be known to us as ABA Therapy. I held onto the pamphlet for quite a while as I began to sort through all the therapy options. My daughter was already in Speech, Occupational, Group and Music Therapy. When I did a simple Google search for autism therapy it delivered a wide range of options from art, play, floor, video modeling, and again that ABA Therapy.

clouded

Clouded by all the options, I began talking to everyone about therapy for kiddos with autism. The waiting room of my daughter’s group therapy was like a support group. Those moms steered away from ABA Therapy; however, I kept being drawn to it. Then, I talked to my sister –in-law, my mom mentor who recommended ABA Therapy. Living on a military base, she had seen many families benefit from this type of therapy.  I, also, talked to my daughter’s special needs teacher. She hinted around my daughter would benefit from more one on one attention. The teacher and my sister-in-law were right. Almost two years later, after ABA combined with speech and occupational therapy, she is much further than where we started. Disappointedly, she only gained an average of six months in mental development in her last evaluation. I realized shortly after the evaluation the things she can do today is far more important than a number on a test. My daughter communicates with us now. She comes to me and asks for milk or her other favorite foods. I feel so proud of her every time she asks for help or follows basic instructions. Just the other day with my hands full, trying to unlock the car door, I thought to myself how nice it was I could let go of her hand and not worry too much she will jot away. These little accomplishments didn’t register on her last evaluation, but it’s these little things that made thirty hours a week spent in therapy all worth it. It was a rough road but we made it through it.

We chose Nationwide Children’s Hospital Autism Center for our ABA services, even though, I knew we would start out our experience by waiting. I figured I couldn’t go wrong by staying with the leading Ohio hospital for children.  They told us we would have to wait about six months before our therapy program would be up and running. In the meantime, I rounded up my daughter’s grandma and aunt as aides. We went through the aide training through Nationwide Children’s Hospital Education Department. I researched ABA therapy plans. I had a little binder with mini-programs I called ‘learning time’. Looking back I have to laugh at myself because I had no idea what I was doing. No matter how much I researched there was no way to replace the professionals. After three months of learning time with family, I learned family members do not make good aides. This was okay because our start-up date was coming closer. At this time, we had our very first meeting with the case manager.  We didn’t know it then but our case manager would become an integral part of our life. I don’t have enough words to describe the amount of gratitude I have for this woman who has been managing my daughter’s care. In our first meeting, she explained in a few months we would begin the consultant model. Essentially, we would have a case manager who works directly under a psychologist. Together they would create programs and goals in which family hired aides would implement. I had no idea what all this meant. I was very confused why they were not providing aides like many other parents described. Luckily, I was a part of a couple of Autism Facebook Groups. They confirmed the consultant model was not uncommon especially with Nationwide Children’s Hospital. Since my family members didn’t work out as aides, there I was off to find aides again. I told myself I would just take a breath and wing it. I found two aides the best way I could. One of the first aides I hired was a young mother who worked on and off as an aide through the Board of Developmental Disabilities of our county. I found her through an ABA job board. The other aid was an eighteen-year-old stepdaughter of a friend that I discovered through the connection section of Care.com. They implemented the ‘learning time’ activities I created while we waited for the consultant model program to kick off. Just as the Autism Center promised, another three months later the program was off and running but not without some bumps in the road.

The hardest part of consultant model ABA Therapy is finding quality aides. Our original aides I hired were very nice and trustworthy but there were opportunities. The young mother had three jobs at one moment in time with us. She hardly ever showed up and was on her phone constantly. A few times towards the end, she even no called no showed. I didn’t blame her because I did the same things when I was young and I didn’t even have kids. Even though it didn’t work out with her, I did have a lot of respect for the young hard working mother. The other aide, my friend’s step-daughter, really impressed me with her time management especially as an eighteen-year-old. She was always there andAngelBaby always on time. She even had some good problem-solving skills when it came to implementing my daughter’s therapy. The last time I talk to her, she was going into special needs education. Even though she might not have been overly excited about her position as my daughter’s aide, I do think my daughter inspired her.

 

 

A few months into the consultant based model we discovered the Autism Scholarship option here in Ohio. We moved to ABA Therapy full time with the scholarship. It was a hard decision but I withdrew her from the public school system and cut down on some of the other programs. Full-time ABA therapy consisted of both at home and at a typical preschool. At the time of transition, we let go of the young mother who seemed to have too much on her plate. The other aide stayed with us but after a while, I noticed she had one foot out the door. I appreciated her a great deal for staying with us at least till I found another aide. I found the next aide through Care.com as well. She was a breath of fresh air. Right from the beginning, she modeled the therapy just as the case manager. The teacher at her new preschool even mentioned how our new aide was so engaged. Down to one aide, I still had hours to fill. Unfortunately, I never found another aide. The struggle to find aides was greater than I had realized. I never had enough aides at one time to fulfill all the planned hours of therapy. Eventually, we were offered a clinic based ABA Therapy through Nationwide Children’s Hospital. This is when my daughter’s progress really took off. The clinic-based program followed the same structure as consultant based model except for we were staffed by qualified aides. This gave her the full experience of Applied Behavior Analysis Therapy.

Now we are off to the next big journey with my daughter. She starts back at public school this fall. She will be in a classroom designed just for autistic kids. We have big decisions ahead of us for her ABA Therapy. Now, we have the option to continue with a slimmed down clinic model, back to consultant model, or parent-centered program. The Autism Scholarship is no longer an option with my daughter being back in the public school system. The cost of a clinic model will be more than the consultant model but both will incur hefty out of pocket expenses. Scheduling may be more flexible with consultant model but we would have to find our own aides. We have to consider all these factors including our daughter’s schedule and how much is too much for her. Like every mom, I worry I won’t make the right decision. I will just have to take a breath, make a decision and wing it along the way.

Share your experience of how you have winged it as a mother. Would you do it again?

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