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.

Monday, July 28, 2008

Sparkle Fairy Sparkles

Whew! July is almost over, but it was so busy I never even had a chance to write our July events on the wipe-off calendar in the hall. We just finished our first official day of school for the 2008-2009 school year and it went quite well. It was nice to just have a quiet day at home.

I didn't get a chance to post about Gracie's first day camp adventure. We won a free summer camp to a local Christian theatre group, and since Ryne was going to Cub Scout camp that week and Anna was going to church camp, we let Gracie sign up for the drama camp. She had an great time, and was even named "Camper of the Day" one of the days.

The last day of the camp they put on a performance that was a cross between American Idol and Sleeping Beauty (huh?). Really, it turned out quite cute. So here is Gracie in her role as Sparkle Fairy.

Tuesday, July 22, 2008

Sweet Sixteen

It's been a busy couple of weeks, and I will have to blog about it in more detail later, but I wanted to get this out tonight for family members who have been following Anna's activities.

When Anna was the age that most kids start taking swim lessons, we were overwhelmed with autism and newborn Grace, so Anna didn't get to do a lot of activities that many kids get to do. Unfortunately, with kids starting sports at such an early age these days, if you don't start young you're often left behind. By the time she started swim lessons she was 2-3 years older than all the kids in her class (and since she's always been 95th percentile for height it looks like she's even older than that). It was the same with gymnastics. When she tried soccer she was put with kids her age, but then she was in the uncomfortable position of having to learn a new sport with kids who had already been playing 3 or 4 years. So a couple of years ago, when a heard about a neighbor lady offering private swim lessons just down the street from us, I quickly signed the kids up.

With the one-on-one instruction, Anna quickly caught up. But she still not what I'd consider a great swimmer. She would be able to swim independently in a pool without us having to be too worried about her, but as far as technique was concerned she had a long way to go. So when the instructor suggested at the end of last summer I sign Anna up for swim team I thought she was nuts. But this instructor coaches for a couple of local swim teams, so I figured she must know better than I do. Anna was excited about the idea, and even offered to drop soccer and gymnastics to try swim team.

So we signed her up for the team that the neighbor helps coach. It is a year-round team and the beginning level practices 2-3 times a week. It started out a little rough. Anna hardly knew anybody and she knew little about swimming. Marc and I knew less than her, so we were no help! She looked very awkward in the pool. She was extremely slow compared to the others in her group (again, mostly kids who were younger than her). Anna is a perfectionist, so you could tell she was really thinking about how she was supposed to swim rather than just going for it like most kids do. Sometimes it was almost painful to watch. But her coaches were great by really encouraging her.

Eventually she started to make progress. We didn't sign her up for any meets right away, but finally in December we decided to give it a try. The first meet is very stressful for both parent and child, because you have no idea what you're doing. Your biggest concern is just getting your child to their event. Once I got her to her event, I was just praying she didn't get last place. Looking back, that sounds so selfish. Somebody has to be last place, and it's not the end of the world if it happens to your child. But I just didn't want her getting too discouraged. Fortunately, she did not get last place (she wasn't too far from there though). We did a few more meets and her confidence improved. We didn't sign up for a lot of events, just a couple of easier ones. So while some kids would be entered in a whole day's worth of events, she would sometimes go to a meet for just one event (about a minute or two of actual swimming). As the year went on she started making some friends, and she was improving every week in her swimming abilities.

By the time summer rolled around she was very into swimming. She said she had found her sport. In the summer many kids also compete in a summer swim conference of neighborhood teams. It's supposed to be less competitive than the year-round teams, so many kids will join who don't swim year round. So we signed Anna up for a summer team in addition to her year-round team. This has been such an amazing experience for her. Since she's been in the pool almost twice a day all summer, she's improved dramatically. She's now able to swim events like butterfly and IM that she couldn't do in the spring. Most importantly, she really loves the sport. When I pick her up from practice she can't wait to tell me how she improved her pullout that day (maybe someday I will know what a pullout is!).

So here is where the bragging starts. She achieved qualifying times for ALL the individual events for the all-conference meet (think summer league version of the Olympics). She was so excited. The preliminaries for the conference meet were last night. I struggled a bit on how to encourage her. I tried to remind her what an accomplishment it was to just be there. I didn't want her to get her hopes up too high. As I looked at the swimmers names listed in the psych sheet (fancy swimmer term for program) many of them were names I recognized from the year-round meets, so we knew the competition would be tough. Anna stayed calm and had a great attitude. She wanted to do her best, but she was just going to enjoy herself.

As the meet got started things went as we expected. Her team in the medley relay came in last place. Her first individual event was the freestyle. She won her heat and took more than a second off her time, but placed 27th overall (out of 38). She was so excited about winning her heat that she didn't care about being 27th.

Her best event was next -- backstroke. Looking at the psych sheet, we were shocked to find out that she was seeded 17th out of 53 swimmers. The top 16 would advance to the finals. I was afraid that she would feel too much pressure, but she remained calm and happy. She remarked that she had a good warm-up and knew just how many strokes she needed before her turn. She was ready to go.

Again, she took more than a second off her time. But it was likely that everyone else improved as well, so we would have to wait and see. I was much more anxious about it than she was. I will have to work on being calm like her. She swam her IM shortly thereafter and did not do great, but she took that in stride as well. She was done for the night and said she was ready to go home.

"Don't you want to wait for the results for the backstroke to be posted?" I pleaded.

"Nah, I'm ready to go to bed."

Well, we ended up waiting anyway because someone had parked so close behind my car that I couldn't get out. As the official taped the results sheet on the wall, I peered over the crowd at the results. Anna stayed off to the side, but finally started to show some anticipation.

She did it!
She had the sixteenth best time!

You would have thought she had won the Olympics by our reactions. In fact, as I went to bed last night I wondered how the moms of Michael Phelps and Katie Hoff do it. I was so excited for my kid that it took me over an hour to fall asleep last night. I don't think any of us care how she does tomorrow night in the finals. I'm just so glad that God has blessed her with something that makes her happy. I am encouraged by how far she has come in less than a year in this sport. It's a good thing to remember in other areas of life, like autism. And I am encouraged that she has maintained such a great attitude. I am confident that she would still have viewed the night a success if she had come in 17th.

Update: She did even better at the finals!!! She took more than a second off her time AGAIN and placed 13th. Here is her swim from the final:

Friday, July 18, 2008

Autism Adventure: Part VI

It was fitting that our autism adventure would bring us to Chicago. Marc and I were both born in the suburbs -- in fact, Ryne's school was just minutes away from the home I spent the first three years of my life. Both Marc and I moved away from the Chicagoland area as young children, but we both grew up with a great sense of pride in our first home. So when Marc accepted his first job out of college in Chicago, we were both thrilled. It would be another year-and-a-half before we were married and I joined him in the windy city, but we had a ball as a young couple living in a tiny loft a mile west of Wrigley Field. We only lived in Chicago for a couple of years, but I think we always felt like we'd be back again someday.

When we arrived for our first meeting at Ryne's new school, we were a little shocked to find that Ryne was one of only two students in the school. I had a quick moment of panic, thinking we had made a big mistake, but as we met the staff my fears quickly subsided. We really had an amazing opportunity being one of the first families in this school. How many home ABA programs have more than enough qualified therapists and a certified consultant on-site? While the school was certainly expensive (about the cost of a year at Harvard at the time) it was a bargain compared to what many Chicago area parents were paying for a home program. It was more than we had been paying for our home program at the blue house, but we had only been seeing our consultant about 4-6 hours a month. Now we seemed to have almost unlimited access.

Ryne adapted very quickly to his school. He had awesome therapists who genuinely loved him and loved working with him. The school itself was not very big, but very cheerful looking without being overly stimulating. Word about the school quickly spread. More students were added in the fall and continued to be added over the next couple of years.

Having a consultant on-site turned out to be a huge factor in Ryne's success. He was a quick learner, so his programs needed updating quickly, which is often difficult when you're having to communicate with a consultant by phone or email. It also allowed staff to work together more effectively. Instead of communicating through written notes over days at a time, a therapist could walk ten feet to the next therapist to discuss something.

As with most ABA-VB programs we used the ABLLS to guide and track our programming. This is what the language portion of his tracking sheet looked like his first year or so at the school.

The gray portions are what skills he had when he started at the school (June 2003), and the colored portions are the skills he learned by October 2004. As I mentioned before, he had quite an extensive vocabulary before he started at the school. This is reflected in the "Receptive Language" column (red arrow). If I asked him to get the cup off the table he understood the command and could even say cup and table. But if we pointed to Anna and said, "Who is this?" he could not answer. That is reflected in the "Labeling" column (orange arrow). "Intraverbals" were severely lacking (blue arrow). Intrarverbal behavior is what enables a child to have a conversation, so that was our primary focus with Ryne over the next two years. An example of something we started with was, "Who's your sister?"

Gradually Ryne gained more and more language. When he started at the school he would have just said, "Cracker," as a request, but he eventually was able to say, "Momma, can I have the square crackers, please?" Within a year he would see his little sister crying and spontaneously make comments like, "Gracie is sad because she is tired." And by the end of year two he was asking people questions (unprompted)and then responding appropriately -- for example, he'd ask someone when their birthday was and then tell them his birthday.

We also worked on things like potty training (within our first month at the school he was diaper free during the day), fine and gross motor skills, play skills, social interaction, and group instruction. The majority of his day was one-on-one instruction with a therapist. But the day would be broken up with short "circle times" with the other students. Here's a clip of him singing some of the songs he learned at circle time.

Ryne became a whole new kid while he was at this school. As his language developed, so did his social skills. He was interacting with his family more and more, especially his sisters. He developed some sweet friendships with a few of the kids at his school. He was approaching kids at the park and actually playing with them. He was doing well in a regular Sunday School class with the help of an aide. Toward the end of the second year he went to summer camp and a gymnastics class with the help of aides and did great. Tantrums became less and less frequent. We no longer had to lock bedroom doors at night to make sure he didn't wander off or keep a death-lock on his wrist any time we went out in public to keep him from running off. He slept in a bed, sharing a room with his older sister, instead of collapsing on the floor after pacing his room for an hour. He started swallowing pills on his own (we tried for a year to get him to do this, but it only took his therapists one day), which enabled us to start on a biomedical program again.

At the end of two years at the school, it was clear he was ready to attend a regular kindergarten classroom. But it would not be in Chicago. A lot had happened to our family outside of our autism adventure during our two years in Chicago, including the blue house never selling. Marc was offered a promotion with his current company back where the blue house was, so we said good-bye again to Chicago. One of the hardest things I've ever done was picking Ryne up from his school on that last day. He loved it there (so much so that for the next year he would say he wanted to go back to Chicago and go to his old school). I was in tears, and so was the staff. As I was about to buckle him into his car seat, a car rushed into the parking lot. Out jumped one his therapists, tears streaming down her face. It was not her scheduled day to work at the school, but she just had to say good-bye to Ryne. That was the kind of experience we had at this school.

So why haven't I included a link to the school? Sadly, it doesn't exist anymore. It's not easy operating a school. The business side of running the school apparently got to be too difficult, which led to the school closing. But a new school rose out of it's ashes, run by two of the ladies who had worked so closely with Ryne. The new school is in a better location, has much better facilities, and has an incredible staff. We visit quite often, and I'm just amazed at the things they are doing there.

The more famous Sinatra tune about this great city says, Chicago is one town that won't let you down, and it certainly did not let Ryne down. We will be forever grateful for the blessings God gave Ryne during those two years.

Tuesday, July 15, 2008

Road Trip: Day 7

There are a million things to do in northern Michigan, but we tend to do the same thing every year because we love it so much. Someday I'd love to spend more than a few days up there, so we can do more. Our last day of vacation was spent canoeing on the Platte River. The river dumps into Lake Michigan, forming the coolest beach peninsula with the Lake on one side and the river on the other. The difference in water temperatures is stunning, and you can even stand where the currents meet and have one foot in cold water and the other in warm.

About 15 minutes into our canoe trip, we stopped for a picnic.

The kids all tried paddling this year.

My two favorite boys.

We take turns letting one kid tag along in a tube.

See you next year, Michigan!

Road Trip: Day 6

We spent the morning at the laundromat drying out sleeping bags and pillows, and checking into the hotel. I took a short nap, while Marc retrieved the rest of our belongings from the campsite. The rest of the rain ended up going south of us, so we carried on with our original plans -- our annual hike at Sleeping Bear Dunes. The goal is to make it all the way to Lake Michigan and back. At 3.5 miles round trip, it is quite the workout, but so worth it. You don't care how cold the Lake is when you get there! This was our third consecutive year to complete the hike (the first year was interrupted by Gracie breaking her arm). We then rewarded ourselves by skipping dinner and going straight for ice cream at the Dairy Maid in Frankfort.

Anna and Ryne were the first to make it to the lake.
Usually Gracie is content to let her siblings go off and do their own thing, while she explores.
Life is good!
This is what happens if you get lost!
Almost back! (Glen Lake in the background)

Saturday, July 12, 2008

Road Trip: Day 5

Our next destination was about 3 hours north to Manistee, MI. We've been coming to this quaint town on the shore of Lake Michigan for a few years now. In an effort to save some money this year, we decided to make it a camping trip instead of staying in a hotel. We've never camped with the kids, and we have very little equipment, so Marc and I were a little nervous. The kids were so excited that they were going to get to sleep in tents at a real campground. So as we pulled into Orchard Beach State Park, expectations were high. We set up camp and then had a lovely meal of roasted hotdogs and watermelon, followed by the best s'mores ever. Our camping experience seemed official.

We still had time for a dip in the lake before sunset. As we walked through the campground, seeing kids playing everywhere and adults relaxing around fire pits, I said to Marc, "I'm sold on this camping thing -- why wouldn't anyone want to do this?"

And then things started to go downhill. Gracie puked all over Marc and I in Lake Michigan (at least the clean-up was easy). We headed back to camp, and took showers in the dark (that didn't stop the mosquitoes from finding us). Marc and the kids headed to bed, while I stayed by the fire to read a bit. Then the rain drops started falling. I quickly pulled all the wet towels off the clothes line and threw them in the car, and then looked for other things that needed to go in the car.

We only have two small tents, one of them not even big enough for an adult. So we had put Anna and Ryne in that tent, while Marc, Gracie, and I were to sleep in the other tent. I had been a little nervous about this arrangement, so I had Marc set up the tents close together with the openings facing each other. After getting everything out of the rain, I checked on Anna and Ryne. They had only zipped the mosquito net, so one of their blankets was already wet. They were sound asleep, so I shook off the blanket and closed the tent tightly. When I got to the other tent, I could already feel some water on the floor -- the tent hadn't been zipped all the way. Our inexperience was showing.

About an hour later the rain turned into a storm. And then the storm turned into WWIII. There was not much wind, but the lightening and thunder was right over us, and the rain felt like a waterfall on top of our tent. Marc and Grace and I were all awake and panicked. The lightning and rain were so intense that we dared not leave the tent to check on Anna and Ryne. But the storm was so loud I wasn't sure I'd be able to hear the kids call for help. I think this was the first time I've ever seen Marc as scared as me. With complete seriousness, I pleaded with God to show us mercy. As the storm progressed, our tent filled up with water. We were sleeping on an air mattress, but there was at least a couple of inches of water all around the mattress. Water was dripping in everywhere. Everything was soaked.

And then, finally, around 3 a.m. the storm let up. We were able to check on the kids. They were damp, but sound asleep! We moved a bunch of stuff out of the car and into our tent, so we could sleep in the car. We decided to leave Anna and Ryne in their tent since they didn't get nearly as much water in their tent (which was a little more elevated than ours), and because it would take too long to move all the stuff out of the car to make room for them. Of course this made me very nervous, so I stayed awake for the rest of the night.

So am I exaggerating about our first camping adventure? Below is our campsite at daylight. Most of the water had drained away by then.

In this picture you can see some of the standing water behind our tent. We certainly could have had it worse.

Like this couple! Their campsite was just across the driveway from us.

And this was just behind them.

Anna and Ryne woke up and they were much wetter than I had originally thought. All our sleeping bags, pillows, etc. were soaked. The park ranger showed up and said it was supposed to rain off and on for the rest of the day, with 80% chance of storms at night.

Thus ended our first camping adventure. We checked into a local hotel for the next two nights.

Road Trip: Day 4

The next day we spent more time with Great Grandma, enjoying a nice lunch at her assisted living center. In the afternoon we went to my other Aunt and Uncle's house and enjoyed seeing their horses and taking a wagon ride.

Road Trip: Day 3

We rolled into Battle Creek, Michigan, about 3 a.m. (yawn) on July 4th. We spent the day at my Aunt and Uncle's house on a lake. My uncle put on an unbelievable fireworks display, and only came close to killing us once. My kids have never been big fireworks fans because of the noise, but each year they tolerate it a little better. It was the perfect 4th of July -- family, food, and fun celebrating our nation's birthday.

Hooray for the red, white, and blue!

Grandma Grace with her 4 great-grandchildren

Friday, July 11, 2008

Road Trip: Day 1

I naively thought I could tell our autism adventure in a few posts, but I still have about two more to go. But for now, it's back to the present with some scenes from our annual vacation to Michigan. But this year we first made a detour to Omaha. When Grace was younger she pronounced it "Hee-haw," so that is what we affectionately call it now. We were in Hee-haw for less than 24 hours -- long enough to take in an evening of the Olympic Swimming Trials. What a thrill! We saw Michael Phelps and Katie Hoff set American records, and were thoroughly impressed with the athleticism of all the swimmers and the energy of the crowd.

Yes, those little ant-sized people are our three kiddos. I know a good photographer would have had the subjects closer and still captured the background, but 1) I'm not a good photographer, and 2) I was standing in the street and didn't really want the kids there with me.

Even if you're not a swimming fan, you'll be impressed with this video I took of Michael Phelps winning the 200 meter butterfly. Amazingly, we were only about 4 rows from the top of the center, and still were able to get good video (what you see is not nearly the quality we can see before uploading).