Tuesday, July 29, 2008

Autism Adventure: Part VII

It was a little weird moving back into the blue house. It felt in some ways like we'd been on a very long vacation. Every time I return from a vacation I'm always struck by how loud my feet sound on the hardwood floors, almost as if I'm a stranger in someone else's house. But by the time I've taken care of all the details like going through the piled-up mail and watering the plants, everything returns to normal and I feel like Dorothy saying, "There's no place like home!". After a two year absence, the house didn't just seem empty but completely foreign, and the details took months to sort out, but normalcy did finally return. And, boy, did normal feel good.

If I had been writing our autism adventure as it unfolded, it is possible that I might not have felt it was necessary to write a Part VII. For years it had been drilled into my brain that there was this small window of opportunity to bring my child out of autism (which, by the way, is not true!). So the goal that I heard repeated over and over was to have the child integrated into a regular classroom by Kindergarten. We had achieved that goal. We enrolled Anna and Ryne in a small Christian school about 15 minutes away from our house. Because it was a Christian school with no special education services available, and Ryne had never been in an inclusive setting full-time, we decided to hire an aide to attend Kindergarten with him -- with the goal of fading the aide out by the end of the year. We also hired one of our favorite therapists from our home program days to come after school twice a week to work on some advanced language skills and academics, but it was really more tutoring than therapy by that point.

Life was starting to seem pretty easy, and I remember having the feeling, "We made it!" Our DAN! doctor made a comment after visiting with us that Ryne didn't seem autistic, and I agreed. I knew he still had some issues (still a little behind in language, some attention issues, and I figured social skills would be something we'd need to continue to work on), but I thought that if he were re diagnosed he would not have full-blown autism anymore. So life seemed less and less about autism, but more and more about just plain parenting.

He seemed to be doing great at school. His Kindergarten class had only ten kids -- 4 girls and 6 boys. These kids were not only accepting of Ryne, but were the most closely bonded class I've ever seen. They all seemed to be best friends with each other. On days I served as a lunch helper I witnessed little girls begging to be the one that got to sit next to Ryne, and he was just eating it up! He was doing well academically, and rarely needed the help of the aide. In fact, the aide (that we paid for) spent the majority of her time making copies and doing other work for the teachers. I felt bad for her -- she had the happy personality that would have made a great therapist, so it was hard for her not getting to do much with Ryne. Sure, there were issues from time to time. We went through a tough time in the late fall (we've now started to notice this happens every year around the same time, so we're wondering if it's some sort of seasonal issue), but he improved greatly after we stopped one of the biomedical treatments we had been trying. We had to work some on control issues as well. But overall he had a great year, and in the spring everyone was in agreement that we would try 1st grade without an aide.

The summer before 1st grade turned out to be tough though. We had a disastrous attempt with another biomedical treatment, and he regressed quite a bit behaviorally. He had lots of meltdowns, showed a lot of obsessive-compulsive behavior, and was just hard to live with. He now seemed very much on the autism spectrum. We were concerned about what would happen when school started. Homeschooling had always been our back-up plan if the Christian school didn't work out, but this was the first time I thought it might really be necessary. I attended a seminar on homeschooling and started talking to a couple of friends who homeschooled their children.

Surprisingly, school started off pretty well. He seemed to be doing fine without the aide and he was happy to be back with his friends. But about once a month he'd have a meltdown and I'd have to take him home. You could also tell that the social gap was growing larger. His classmates were still wonderful with him, but I wondered how long it would last.

But something had happened at home that was going to change everything. Mom started reading more and more about homeschooling. First it was The Well-Trained Mind. Then it was Homeschooling the Challenging Child. And then it was about half a dozen other homeschooling books I checked out from the library. Mom was hooked. Mom started thinking this homeschooling thing sounded pretty neat. Not just for Ryne, but for all three kids! Some people thought Mom was nuts.

Ironically, one of the things I found most appealing about homeschooling was abandoning one of the things that had most attracted me to Christian schools -- Bible memorization! When Anna first started Kindergarten in Chicago, I loved learning her weekly Bible verse with her. We'd often make up little songs to help her memorize her verse. But by the time Ryne was in first grade and Anna in 3rd, Bible memorization had become a dreaded chore. They each had verses to learn for Sunday School. Anna had to memorize a verse each week for school, plus a catechism passage for church. Ryne had to memorize two verses a week for school. So every night we were frantically trying to learn a new verse for something -- many times even in the car on the way to school. Both kids have great memory, so they always had the verses memorized on time, but it was a frustrating experience for all of us. We never had time to actually discuss what these verses meant. This couldn't be what God meant by spiritual training, I often complained to Marc.

So over Thanksgiving vacation Marc and I officially decided that we would pull the kids out of school at the end of the semester and start homeschooling. I can say with all confidence that we did not do it because of autism. We did it because we felt like it was the best thing for our family. We could have made the school thing work out for Ryne. He had a great teacher and great friends. I could have worked harder to fix the things that needed fixing. But I didn't want to. I wanted to concentrate our time on the things that were really going to make an impact on our children's lives.

Sadly, Ryne didn't make it until the end of the semester. Like the year before, his behavior started spiraling out of control. And this time it was harder, because some of the older kids in the school started to make fun of Ryne. I don't know that Ryne knew about any of that, but it affected Anna a lot. So we had to take Ryne out of school two weeks early. I know that God has a purpose in everything, but this was hard to take because for the next year Ryne would talk about how he had been kicked out of school. In his mind he failed, even though we had made the decision before any of this happened. The wounds are still healing.

Nevertheless, homeschooling has been the best part of our autism adventure. I am so thankful for the last year-and-a-half. The first year certainly wasn't easy, but everyone had warned me in advance, so we persevered. And now we're thriving, and I believe the best is yet to come. We stumbled upon a thing called RDI that I think is going to do great things for Ryne and our family. It's not so much a therapy as it is a lifestyle -- a lifestyle that fits in perfectly with homeschooling. So our autism adventure continues. The Apostle Paul tells us in 1 Thessalonians 5:18 to "give thanks in all circumstances." I do thank God for our autism adventure, the good and the bad, because it has enabled us to trust in God more and to better recognize His faithfulness. It has been and will continue to be an amazing adventure.

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