Sunday, June 29, 2008

Autism Adventure: Part V

Autism can be hard. It falls on the parents' shoulders to figure out what options are available, and then decide which of those options are best for your child and your family as a whole. I have yet to meet a family affected by autism who has found this process easy.

Nevertheless, I believe God has guided us well on our adventure. He's closed doors to places we probably didn't need to go, and he's given us the wisdom to not even try opening some doors. He's enabled us to find Ryne the help he needed, yet not be so obsessed with finding help that we missed out on just being with him. God has grown Marc and I spiritually through this adventure, causing us to depend on Him in ways we never had before.

Just before Ryne turned 3, the path God led us to was Applied Behavioral Analysis (ABA). We found out about it from some friends whose son benefited greatly from ABA. We decided that we would set up a home program -- we would hire a consultant to oversee the program and provide training, and we would hire therapists to do the actual work with Ryne. Initially my goal was to do some of the work myself, but I quickly found out that my very pregnant body was not quite up to the task. We hired 4 therapists, a friend of ours from church, a college education major, and two high school students.

Ryne had made some progress through the occupational therapy the previous months. It was the occupational therapist (not the speech therapist) who figured out how to get Ryne to talk. She seemed to understand how to motivate and engage him. Once our ABA therapists were trained they seemed to pick up where we left off with the OT. Ryne quickly started speaking more and more words, and his play and imitation skills really took off. Within six months of ABA, he had a vocabulary of approximately 500 words. While that might seem impressive, it really did not do a whole lot for his overall communication. He could not put together a two-word sentence, and he still rarely initiated communication. Curiously, he could sing entire songs in perfect pitch with us.

Moreover, we were starting to struggle with the "business" side of things -- we were having major personnel issues. Our friend from church and the college student turned out to be excellent therapists, and Ryne adored them. The two high school students had the potential to be good therapists, but lacked the maturity and commitment we needed. They were both working multiple jobs, making scheduling difficult and affecting their performance.

One day I was working in the kitchen where I had a video camera monitor that allowed me to see what was going on in Ryne's bedroom (the therapy room). The camera was pointed at a little table set up in the room where Ryne would do some of his work. When he wasn't at the table often Ryne and the therapists would work/play on the floor out of the range of the camera, but I could still hear what was going on. As I was working, it suddenly dawned on me that it was very quiet in there. I figured the therapist was just writing some notes or taking data, so I didn't think much of it at first. Ten minutes later it was still very quiet. I decided to go upstairs and check on things and found the therapist asleep in Ryne's closet, while he played quietly on the floor! I had bumped her feet with the door when I came in, so she quickly woke up and explained she was not feeling well. I sent her home. Now I'm sure most people would have been smart enough to fire her on the spot, but I was a week away from my due date and decided to give her a second chance.

My parents came into town to help with the kids, and Grace arrived two days before her due date. So my parents supervised the ABA program while I was in the hospital, and unbelievably the same therapist fell asleep in the closet AGAIN! So my mom did what I should have done a week earlier -- sent her home and told her not to come back! Shortly thereafter, Marc had to fire the other high school student as well. It was then that I started to think there must be a better way.

A couple of months later our consultant said she wanted to change our program a bit to encourage more language. She wanted to incorporate components of Verbal Behavior (VB). I was initially hesitant because I had never heard of VB, but had been warned about "watered-down" ABA, and I worried that's what was happening here. (If anyone needs explanation of what ABA or VB is let me know in the comments section, and I can give you some links). The consultant reassured me and gave me some links to research VB, so we went with her recommendations. Immediately, we saw progress in Ryne's language. Ryne started putting two words together, and was finally able to communicate if he wanted something. We still had a long way to go, but it was clear that VB was working better than a more traditional ABA approach.

Another couple of months passed and we continued to have personnel issues. One of our replacement therapists just decided not to show up one day and never returned any of my phone calls. So I never even had the chance to fire her. The two remaining therapists continued to be incredible and picked up the extra hours to keep the program running. You could tell how much they loved Ryne, and he loved them. But the friend from church was going to be moving to Texas soon for her husband's medical residency. As incredible as she was, we could not do this program with just the college student.

And then one day Marc came home and said his company asked him if he was interested in a position in Chicago. It was a great opportunity and we loved Chicago, but we weren't really interested in moving. But on a whim I sent out some emails to my internet groups, asking about services in Chicagoland. I got three responses and all three recommended the same ABA/VB consultant, who also happened to be opening a school for young children with autism. As I read through the school's website, I was intrigued. It seemed like a great concept, and when I talked to the consultant I felt like the school would be a great fit for Ryne. We could send him to a school that utilized the latest research in ABA/VB therapy, had a certified consultant on-site, and they would handle the business side of it! We'd finally get to just be parents again! Marc agreed it seemed perfect and told his company he was interested in the position. We sent off an application to the school and waited.

The abbreviated version of what happened over the next couple of months is that Marc's company was ready to get the job filled, but we had to wait and see if Ryne was going to get accepted to the school. It didn't work out quite as we expected -- the company offered the job to someone else the same day we received word Ryne had been accepted to the school. So our first thought was that it wasn't meant to be. But neither of us could let the idea go, and we continued to pray about it.

In May of 2003 we decided to move to Chicago. Everybody thought we were nuts. I cannot tell you how amazing my husband was through all of this. He never panicked. Instead he put all his trust in God, and reminded me to do the same. He was willing to sacrifice a great career that he had worked very hard to establish, with no guarantee he was going to find a job in Chicago. About three weeks later we packed up a small U-Haul with the bare minimum of furnishings and clothes and moved to a rental town home in the NW suburbs of Chicago. Marc would stay behind and continue in his job until he found something in Chicago. We put the blue house on the market.

The autism adventure was getting pretty exciting.

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