Optimal outcomes. I have just hit on the key idea and goal of our journey with autism. We have been working towards it for years, and now it has gelled. "Optimal Outcomes" is an area of research in autism. I just read a journal article on it for a research project in my masters graduate program. It defines what we are, and have been doing. It defines the outcome we want. It is also defines the dream, the hope, and the blood, sweat, and tears of our family for the last six years.
"...between 3 and 25% of most cohorts appear to lose the diagnosis [of autism]." Lose. Gone. No longer applies. We have long suspected the possibility, and seen hints here and there. We knew it happened for other kids, but we sometimes barely dared to hope. We rarely dared to voice it. Especially not to average professionals. But we still worked towards it every day.
Optimal outcomes. It is in the research. It is in the journals. It is in a few of the books when you look closely. Never guaranteed, but often sought. Are we crazy? No!
How does this happen? "Optimal outcome parents were generally highly involved in the children's treatment programs and in their social lives. Parents who advocate vigorously for the best interventions and who carry over treatments into other hours of the day do not guarantee the kind of Optimal Outcomes we describe here, but may maximize the chance of one." Another cited study reported it's finding that, "....about 18% of the children diagnosed at age 2 and receiving mostly behavioral intervention had lost the diagnosis by age 4." We have missed that early intervention window, but since we are still going on a great behavioral intervention program, and making excellent gains, we feel we are still in the running to lose the diagnosis by the end of high school. If not before.
What does this mean? Well, it means both nothing and everything. Nothing is confirmed, yet everything is possible. Nothing is lost, and there is everything to gain. When looking deeply into the research article I saw that Alex meets the standards for Optimal Outcome potential. He is verbal. He has enough IQ. He has enough desire for social interaction. We will keep going with the behavioral interventions. We will keep on being deeply involved with his social life. We will take this for the marathon that it is. We will not stop. And in the end, we will find an optimal outcome of one kind, or another.
Tuesday, July 16, 2013
Thursday, March 28, 2013
California Workshop Days
It's not magic, and it's not rocket science, but PRT is definitely a new way of thinking. Our final two days in Santa Barbara, California last month were where the rubber hit the road. Alex had been tested and assessed, and they found the areas that we needed to work on. These areas were:
We have been working ad-hoc on these areas since we got home, while we await the final report. The report will also go over all the testing and findings. They told us that in general his IQ scores have been rising in many areas. There are still serious deficits, but once we have them pinpointed we can work to use his strengths to fill in the gaps. "Alex has plenty of intelligence." This is a direct quote from the clinicians. That is what we have always suspected, and the mode we have operated in, but bringing that intelligence out is the trick. I find it very interesting that the very first thing presented in his school testing was the IQ test. In kindergarten he tested very low in IQ, and I wonder how many of the professionals who have worked with Alex looked at that result and made a whole cascade of decisions based on an assumption that the score meant low intelligence in general. Maybe none. Maybe only a few. Maybe some. I will never know. But it chaps my hide to think that any decisions have been made on that basis, and that I have fallen into that trap too. I do not know what the solution is. I do not think we should throw out all testing. But I also think we need better measures, especially where communication dysfunction is concerned. Alex is not a native speaker of English, and he is not a native speaker of Non-Verbal. He has learned, and learned pretty well, but it is still a foreign tongue that overlays every aspect of his interactions with people. And perhaps causes people to question his intelligence.
I saw this first hand with another kiddo this week. I worked very closely with an ASD child at work. I found this child to be quite intelligent, and versed in getting needs met. I felt very at home working with this child, and teaching the parents about some of the seemingly mysterious aspects of ASD. It is all about communication. Unusual communication, paired with a-typical language useage, but communication all the same. This child learned and progressed quite a bit in just a short time on the unit, at least as far as what I saw. Then I read an official report. Another person of standing on the unit started and ended with "Low Intelligence". It was heart breaking, and I hope the parents never see that particular in house report. It could prompt them to give up, when this kiddo has a lot of potential for learning. One thing I am learning is that intelligence and language are not the same thing, but many people make that assumption.
So, we have our work cut out for us. The trip to California was not an end point, but another beginning. Each question answered leads to many more questions and loads of work to be done, but that is okay. That is what life is all about, right? Problems, problems solving, celebration, and starting all over at the next level. The final report will be in soon, and then we can begin our monthly consultations with the Keogel Autism Center, and continue on our way. Problems, celebrations, and all.
- What it means to be On-topic
- On-topic commenting
- On-topic questions
- Conversation
- Following Directions
- Being Flexible
- Academic success
- Reading
- Handwriting
- Resistance to outings
- Limited food selections
- Eye contact
- Screen time
- Conversation with kids
- What parents should do when acting out
- Stimming
- How to apply PRT at home
- Maintenance vs. Acquisition Tasks
- Priming
We have been working ad-hoc on these areas since we got home, while we await the final report. The report will also go over all the testing and findings. They told us that in general his IQ scores have been rising in many areas. There are still serious deficits, but once we have them pinpointed we can work to use his strengths to fill in the gaps. "Alex has plenty of intelligence." This is a direct quote from the clinicians. That is what we have always suspected, and the mode we have operated in, but bringing that intelligence out is the trick. I find it very interesting that the very first thing presented in his school testing was the IQ test. In kindergarten he tested very low in IQ, and I wonder how many of the professionals who have worked with Alex looked at that result and made a whole cascade of decisions based on an assumption that the score meant low intelligence in general. Maybe none. Maybe only a few. Maybe some. I will never know. But it chaps my hide to think that any decisions have been made on that basis, and that I have fallen into that trap too. I do not know what the solution is. I do not think we should throw out all testing. But I also think we need better measures, especially where communication dysfunction is concerned. Alex is not a native speaker of English, and he is not a native speaker of Non-Verbal. He has learned, and learned pretty well, but it is still a foreign tongue that overlays every aspect of his interactions with people. And perhaps causes people to question his intelligence.
I saw this first hand with another kiddo this week. I worked very closely with an ASD child at work. I found this child to be quite intelligent, and versed in getting needs met. I felt very at home working with this child, and teaching the parents about some of the seemingly mysterious aspects of ASD. It is all about communication. Unusual communication, paired with a-typical language useage, but communication all the same. This child learned and progressed quite a bit in just a short time on the unit, at least as far as what I saw. Then I read an official report. Another person of standing on the unit started and ended with "Low Intelligence". It was heart breaking, and I hope the parents never see that particular in house report. It could prompt them to give up, when this kiddo has a lot of potential for learning. One thing I am learning is that intelligence and language are not the same thing, but many people make that assumption.
So, we have our work cut out for us. The trip to California was not an end point, but another beginning. Each question answered leads to many more questions and loads of work to be done, but that is okay. That is what life is all about, right? Problems, problems solving, celebration, and starting all over at the next level. The final report will be in soon, and then we can begin our monthly consultations with the Keogel Autism Center, and continue on our way. Problems, celebrations, and all.
Tuesday, March 5, 2013
Eucalyptus, Torrey Pines, and the Rarest Pine Cone in the World
Sometimes I feel like my life is a random series of very bizarre events that have no connections. And then I have a day like today and it all starts to come together. If you know me well, you know I have lived in New Zealand as a whitewater kayak and general outdoor instructor. You probably also know I lived in Boulder Colorado, where I met my husband, and studied the art and science of massage therapy. And you may even recall that I grew up in central Wisconsin, camping and running around outdoors at every opportunity. And if you know me really well you are aware of my affinity for trees. Trees figure heavily in my life. From the Maple in my front yard that I spent many a happy hour in, to the tall pines at the campgrounds my family frequented, to my many tree friends across the world. I hug trees. I climb them whenever possible. And I generally find them fascinating.
When I was in California last month I paid attention to the trees. Especially the trees on the UCSB campus. There were giant Blue Gums towering over the autism center we attended. They were very comforting to me. I know Blue Gums because I used to camp beneath them in New Zealand when I took kids out on overnights in the bush. They are gorgeous and unusual, with a funky papery bark completely different from my beloved birch bark trees of the North. Instead of white they are tan, and instead of bumpy they are very smooth, with the paper stripping off vertically. And so tall they touch the sky. I have not seen one since NZ, so many years ago. And there they were. Gentle guardian giants. A form of eucalyptus tree that made the whole area smell heavenly.
California is awash in different trees and plants. Different from the stock at home. Trees, bushes, and flowers everywhere, an assault on the senses coming from deep winter. I could spend weeks just exploring and learning about them all. As is was I got the briefest glances and smiles and wonders as I went by. We were very busy on a different mission, but I could not help appreciating the flora. And one thing in particular caught my eye. Here and there some massive pines. Massive, gorgeous, amazing pines. We drove by one in Carpinteria on our last day, with a sign on it that said "1888" on it and half a city block to itself. Oh how I longed to stop and visit that tree! But we were late, so we drove on by and I sadly watched it go. Later that day on campus I spied another huge pine. Huge, beautiful, but no sign. What it did have were massive pine cones scattered beneath it. I could not help myself. I had to have one. I made the boys go on ahead while I searched out an intact cone. It barely fit in my small bag, but I didn't care. I nestled it in there and brought it back home, along with two Blue Gum "acorns". Why? I don't really know, they are just good for my soul.
I have showed off my treasures since we got back. I have carted them around and pulled them out like diamonds. I am such a geek. But again, I can't help myself. To me they are beautiful. And today, I found out more. Looked up that tree in Carpinteria (ahh, the wonders of the internet), and it is indeed very special. Look up The Wardholme Torrey Pine if you are interested, it was transplanted in 1888 by a judge that was also an exotic tree lover. It has a long history. Scrubby in the wild, when these trees are well cared for they grow to magnificent size. I will be back to visit it one day. It is the largest of it's kind at 20 feet 5 inches around. It also turns out the Torrey pine is considered the rarest pine in the world. Curious now, I looked up a campus map of trees at UCSB. Again, the wonders of the internet. I wanted to know what kind of pine I got MY cone from. I knew it was big, and a pine. And now I know it was also a Torrey Pine. A cone from the rarest pine in the world. It took 2-3 years for the cone to mature and drop. It is as big as they come for the species, 6 inches tall and 6 inches across. It even came with a dozen giant pine nuts that Alex kindly freed for us. It will not grow in my home area, but we can show it off for years to come.
What does it all mean? That I am a nut, with a big pine cone and a good eye? That my life is all tying together in a most interesting way? That I am on the right path? That I am pure crazy? I don't really know, but it all makes me smile. Smile, and laugh. And smile, and laugh, and want to share a story of the crazy, beautiful, unexpected nature of this thing we call life.
When I was in California last month I paid attention to the trees. Especially the trees on the UCSB campus. There were giant Blue Gums towering over the autism center we attended. They were very comforting to me. I know Blue Gums because I used to camp beneath them in New Zealand when I took kids out on overnights in the bush. They are gorgeous and unusual, with a funky papery bark completely different from my beloved birch bark trees of the North. Instead of white they are tan, and instead of bumpy they are very smooth, with the paper stripping off vertically. And so tall they touch the sky. I have not seen one since NZ, so many years ago. And there they were. Gentle guardian giants. A form of eucalyptus tree that made the whole area smell heavenly.
California is awash in different trees and plants. Different from the stock at home. Trees, bushes, and flowers everywhere, an assault on the senses coming from deep winter. I could spend weeks just exploring and learning about them all. As is was I got the briefest glances and smiles and wonders as I went by. We were very busy on a different mission, but I could not help appreciating the flora. And one thing in particular caught my eye. Here and there some massive pines. Massive, gorgeous, amazing pines. We drove by one in Carpinteria on our last day, with a sign on it that said "1888" on it and half a city block to itself. Oh how I longed to stop and visit that tree! But we were late, so we drove on by and I sadly watched it go. Later that day on campus I spied another huge pine. Huge, beautiful, but no sign. What it did have were massive pine cones scattered beneath it. I could not help myself. I had to have one. I made the boys go on ahead while I searched out an intact cone. It barely fit in my small bag, but I didn't care. I nestled it in there and brought it back home, along with two Blue Gum "acorns". Why? I don't really know, they are just good for my soul.
I have showed off my treasures since we got back. I have carted them around and pulled them out like diamonds. I am such a geek. But again, I can't help myself. To me they are beautiful. And today, I found out more. Looked up that tree in Carpinteria (ahh, the wonders of the internet), and it is indeed very special. Look up The Wardholme Torrey Pine if you are interested, it was transplanted in 1888 by a judge that was also an exotic tree lover. It has a long history. Scrubby in the wild, when these trees are well cared for they grow to magnificent size. I will be back to visit it one day. It is the largest of it's kind at 20 feet 5 inches around. It also turns out the Torrey pine is considered the rarest pine in the world. Curious now, I looked up a campus map of trees at UCSB. Again, the wonders of the internet. I wanted to know what kind of pine I got MY cone from. I knew it was big, and a pine. And now I know it was also a Torrey Pine. A cone from the rarest pine in the world. It took 2-3 years for the cone to mature and drop. It is as big as they come for the species, 6 inches tall and 6 inches across. It even came with a dozen giant pine nuts that Alex kindly freed for us. It will not grow in my home area, but we can show it off for years to come.
What does it all mean? That I am a nut, with a big pine cone and a good eye? That my life is all tying together in a most interesting way? That I am on the right path? That I am pure crazy? I don't really know, but it all makes me smile. Smile, and laugh. And smile, and laugh, and want to share a story of the crazy, beautiful, unexpected nature of this thing we call life.
Thursday, February 28, 2013
California Dreamin'
We are back! From Minnesota, to California, and back again. We have been assessed, examined, tested, and taught. We have just returned from the world renowned Koegel Autism Center at UCSB, and life is good. It is not easy. It is not straight forward. It is not complete. But it is good. Very, very good.
We went for four days of assessment and training. For Alex, and for Kevin and I too. The Koegel Center believes in teaching the parents along with the kiddos, so that treatment can be delivered round the clock at home, and everyone is on the same page. A novel idea in a world of specialization where your kid with challenges is usually whisked away to private therapy, and parents are often seen as a bother. PRT is the title of their method, Pivotal Response Treatment. Developed by the Koegels, this treatment is both research based and highly effective. In September I attended their international PRT conference as both a parent and potential practitioner, and found the Koegel's to be the real deal. Myself, Alex's para-professional, and 300 others from the US and abroad learned in depth about the modality, and the latest research findings. In November our families number was finally up, and after waiting for two years to get into the Center we were able to plan a week long treatment visit. On the eve of February Winter Break we left on our journey.
What was it like? Well, the preparation process and the first day of testing and examination were like being ground up into hamburger. We went over every deficit our son has. He was a wreck, and so were his mom and dad. But we all got through it. The Center itself was calming. On the edge of the University of California, Santa Barbara campus, a sun washed quiet building surrounded by giant Eucalyptus trees. The staff were kind and prepared, expert and confident. The lead clinician and assessment director, Dr Ty Vernon, was adept at getting the best out of Alex. The panel of tests they chose covered every area of intellect, development, and cognition. Alex was given ample breaks, and quality cheer-leading. Kevin was in for every moment of the tests. I was in another room, reviewing every step of Alex's history, as well as all of his current functioning. While perfectly handled, the process was still exhausting, and we left the first day in a numb state. USCB is on it's own peninsula, completely self contained about 5 miles from Santa Barbara proper. We drove into town, and had a lovely meal at the original Sambo's restaurant. Then we went for a walk along the beach. Alex was already recovering and got his toes right in the ocean. He smiled and smiled, and we knew it would all be worth while. Our beach adventure finally ended when a small wave got our boy, he sat in the surf wet to the chest, and we all laughed and laughed.
The next morning Alex did not want to go back. He told me he did not like the tests because they were too hard. It had also been very hard on Kevin, watching Alex flounder in conceptual and spatial areas. Seeing exactly where deficits lie. It seems our boy is good at skating by what he cannot do, and redirecting into other areas. We may have been assuming too much, and not seeing the forest for the tree in front of us. Just what we needed to know, but hard to see so blatantly. Hard, but good. Day 2 actually went better than the previous day, less exhaustion as the testing wrapped up and excitement as we looked forward to getting to the training part. I had some break time to go out into campus, which was fun, and then came a big thrill for me. In the halls of the Center I ran into Dr. Lynn Koegel. The co-founder and clinical director of the Center. Dr of Educational Psychology and Speech Language Pathologist. Autism researcher for 20 years. Author of countless articles, manuals, and books. Also seen on Super Nanny. National and International expert in autism. I met her, and she is amazing. Kind, focused, intense, and interesting. We had a wide ranging conversation that covered Alex, autism, our family, education, PRT, and my own masters pursuits. During this time she met Alex as he went by with Kevin, and she conversed with him as well. You could see her awareness and focus hone in on him like a laser. An intelligent, experienced, and curious laser that relayed information to a highly specialized brain. Her eyes lit up, and as he traveled on with Kevin she commented to me that we had done very well with him.
We went to the beach at the end of Day 2. A beach near the university. We all breathed a huge sigh of relief. The testing was over, and we had survived. Two more days were to come, all tailored training for our whole family. Ty told us many things at the end of the day, but I had to file them away for that moment. I was too stunned at the conversation, comments, and assessment of Dr Koegel. "We had done very well with him." Like an arrow to my heart, it was what I had hoped to hear, and feared I would not. All the work and study, time and effort were paying off. My perceptions were not off. Our hopes had good basis. This from one of the leading lights in the field.
As we played on the beach I mulled it all over while Alex chased sea gulls and waves, and Kevin took pictures. The message I distilled from that day was that our sweet boy was doing fine, and we would find a way. A way to follow our dreams. Our parental dreams that our son will be able to have, make, and follow dreams of his own. The assessment was over, and the bright future lay ahead.
We went for four days of assessment and training. For Alex, and for Kevin and I too. The Koegel Center believes in teaching the parents along with the kiddos, so that treatment can be delivered round the clock at home, and everyone is on the same page. A novel idea in a world of specialization where your kid with challenges is usually whisked away to private therapy, and parents are often seen as a bother. PRT is the title of their method, Pivotal Response Treatment. Developed by the Koegels, this treatment is both research based and highly effective. In September I attended their international PRT conference as both a parent and potential practitioner, and found the Koegel's to be the real deal. Myself, Alex's para-professional, and 300 others from the US and abroad learned in depth about the modality, and the latest research findings. In November our families number was finally up, and after waiting for two years to get into the Center we were able to plan a week long treatment visit. On the eve of February Winter Break we left on our journey.
What was it like? Well, the preparation process and the first day of testing and examination were like being ground up into hamburger. We went over every deficit our son has. He was a wreck, and so were his mom and dad. But we all got through it. The Center itself was calming. On the edge of the University of California, Santa Barbara campus, a sun washed quiet building surrounded by giant Eucalyptus trees. The staff were kind and prepared, expert and confident. The lead clinician and assessment director, Dr Ty Vernon, was adept at getting the best out of Alex. The panel of tests they chose covered every area of intellect, development, and cognition. Alex was given ample breaks, and quality cheer-leading. Kevin was in for every moment of the tests. I was in another room, reviewing every step of Alex's history, as well as all of his current functioning. While perfectly handled, the process was still exhausting, and we left the first day in a numb state. USCB is on it's own peninsula, completely self contained about 5 miles from Santa Barbara proper. We drove into town, and had a lovely meal at the original Sambo's restaurant. Then we went for a walk along the beach. Alex was already recovering and got his toes right in the ocean. He smiled and smiled, and we knew it would all be worth while. Our beach adventure finally ended when a small wave got our boy, he sat in the surf wet to the chest, and we all laughed and laughed.
The next morning Alex did not want to go back. He told me he did not like the tests because they were too hard. It had also been very hard on Kevin, watching Alex flounder in conceptual and spatial areas. Seeing exactly where deficits lie. It seems our boy is good at skating by what he cannot do, and redirecting into other areas. We may have been assuming too much, and not seeing the forest for the tree in front of us. Just what we needed to know, but hard to see so blatantly. Hard, but good. Day 2 actually went better than the previous day, less exhaustion as the testing wrapped up and excitement as we looked forward to getting to the training part. I had some break time to go out into campus, which was fun, and then came a big thrill for me. In the halls of the Center I ran into Dr. Lynn Koegel. The co-founder and clinical director of the Center. Dr of Educational Psychology and Speech Language Pathologist. Autism researcher for 20 years. Author of countless articles, manuals, and books. Also seen on Super Nanny. National and International expert in autism. I met her, and she is amazing. Kind, focused, intense, and interesting. We had a wide ranging conversation that covered Alex, autism, our family, education, PRT, and my own masters pursuits. During this time she met Alex as he went by with Kevin, and she conversed with him as well. You could see her awareness and focus hone in on him like a laser. An intelligent, experienced, and curious laser that relayed information to a highly specialized brain. Her eyes lit up, and as he traveled on with Kevin she commented to me that we had done very well with him.
We went to the beach at the end of Day 2. A beach near the university. We all breathed a huge sigh of relief. The testing was over, and we had survived. Two more days were to come, all tailored training for our whole family. Ty told us many things at the end of the day, but I had to file them away for that moment. I was too stunned at the conversation, comments, and assessment of Dr Koegel. "We had done very well with him." Like an arrow to my heart, it was what I had hoped to hear, and feared I would not. All the work and study, time and effort were paying off. My perceptions were not off. Our hopes had good basis. This from one of the leading lights in the field.
As we played on the beach I mulled it all over while Alex chased sea gulls and waves, and Kevin took pictures. The message I distilled from that day was that our sweet boy was doing fine, and we would find a way. A way to follow our dreams. Our parental dreams that our son will be able to have, make, and follow dreams of his own. The assessment was over, and the bright future lay ahead.
Saturday, February 16, 2013
Big Things on the Horizon
Big things. Huge. Gigantic. In the wake of continuing shake ups in Alex's SpEd department we are stepping out of the fray. Exit stage left. Hop on plane. Step off in sunny California. Going to one of the best autism centers in the world.
Have I mentioned lately that no one actually knows what autism is? No one. Not even the folks at this center, which is known world wide. They are the first to admit that no one knows what it really is. But they will tell you about how their methodology creates visible brain changes that trend towards normal. And they will show you case studies about kiddos that moved into the typical range. But they wont tell you what autism is, because no one knows. Which drives me nuts when I start to sense that people think they know, and think they know what it means for my son. Because that usually means no good.
I was once told by an expert to never, ever tickle my son. Experts put my son in preschool in a level 3 autism classroom, where he did not see a typical child all year and picked up terrible behaviors. I was told by another expert that I should have my son in an autism only kindergarten room, and I would want him in that room with the big swing and low expectations for his entire elementary school education. Another expert spent much of his teaching time letting him watch Cat in the Hat videos, presumably because she didn't think him capable of more. I believe that these "experts" all thought that they knew what autism was, and what it meant for my son. I know they were wrong.
We are going to California for some answers. We are putting out a huge amount of money, and asked our family for great help, because we believe that having up to date information is the best possible course of action. It takes current research 25 years to make it into mainstream practice. We are not willing to wait.
So we are heading to the University of California, Santa Barbara, and will be getting a full work up at the Koegel Center. Robert and Lynn Koegel have been working with kids on the autism spectrum for over 30 years. Robert studied and researched with Lovaas. They have published works for decades and built a dynamic program at UCSB. They work with kids from infancy all the way into adulthood. They have opened multiple clinics, and teach nationally and internationally. They are a powerhouse, and we are so fortunate to be heading to their ground zero.
Tomorrow (Sunday) we fly. Tuesday, Wednesday, Thursday, and Friday we will be assessed, examined, tested, and taught at their clinic. And Monday, we get to go to Disney. I wish Disney could be at the end of the trip, but maybe it will get all our ya-yas out before the serious stuff. We already sent in every test and assessment Alex has ever had, plus a 16 page current intake. When we leave we will have a 22 page report, possibly a different diagnosis from basic autism, and hopefully a very specific plan of action. In that report we hope to see a clear picture of where our son stands on the autism spectrum, and what his capabilities are likely to be. Are we crazy to be aiming towards college? Do we have a prayer for an independent life? What, exactly, is it going to take to hit his highest potential? I know that life is actually a crap shoot. I know that nothing is guaranteed. I know that plans are not to be depended upon. But I have to try. We have to go for it. Alex is too charming, and funny, and unique, and wonderful not to give him the gift of our complete and total devotion. We will not let him sink just because some "experts" in our home town have assumed that an autism label is also a "you will never succeed at being independent" label. "We shoot for adequate" is not the educational philosophy in our home, as it is in many special education departments. We shoot for the moon, instead.
So, off we go. Alex, and Mom, and Dad. We are leaving behind the snow. The five degree temperatures. The wind and ice. Also the skiing, and the woods, and the wood stove. It would have been a lovely winter break at home, with temps heading up to the 20's soon, and many play dates to be had. But it's okay. Santa Barbara will be nice. We will sweat it out at 40 to 65 degrees, and get some sun block for our pasty selves. We will see palm trees, cool flowers, beaches, and ocean. Smell the salt, and peel off about 12 layers. There is a pool to swim in and a beach to walk to from the hotel. And Disney should be a riot, especially with my best friend from growing up who lives in LA. I am a little afraid that the place might make a lasting impression on Alex, and some day he might want to go to college there. But really, that is the least of my worries. We are off tomorrow, and hopefully we will continue to find the world.
Have I mentioned lately that no one actually knows what autism is? No one. Not even the folks at this center, which is known world wide. They are the first to admit that no one knows what it really is. But they will tell you about how their methodology creates visible brain changes that trend towards normal. And they will show you case studies about kiddos that moved into the typical range. But they wont tell you what autism is, because no one knows. Which drives me nuts when I start to sense that people think they know, and think they know what it means for my son. Because that usually means no good.
I was once told by an expert to never, ever tickle my son. Experts put my son in preschool in a level 3 autism classroom, where he did not see a typical child all year and picked up terrible behaviors. I was told by another expert that I should have my son in an autism only kindergarten room, and I would want him in that room with the big swing and low expectations for his entire elementary school education. Another expert spent much of his teaching time letting him watch Cat in the Hat videos, presumably because she didn't think him capable of more. I believe that these "experts" all thought that they knew what autism was, and what it meant for my son. I know they were wrong.
We are going to California for some answers. We are putting out a huge amount of money, and asked our family for great help, because we believe that having up to date information is the best possible course of action. It takes current research 25 years to make it into mainstream practice. We are not willing to wait.
So we are heading to the University of California, Santa Barbara, and will be getting a full work up at the Koegel Center. Robert and Lynn Koegel have been working with kids on the autism spectrum for over 30 years. Robert studied and researched with Lovaas. They have published works for decades and built a dynamic program at UCSB. They work with kids from infancy all the way into adulthood. They have opened multiple clinics, and teach nationally and internationally. They are a powerhouse, and we are so fortunate to be heading to their ground zero.
Tomorrow (Sunday) we fly. Tuesday, Wednesday, Thursday, and Friday we will be assessed, examined, tested, and taught at their clinic. And Monday, we get to go to Disney. I wish Disney could be at the end of the trip, but maybe it will get all our ya-yas out before the serious stuff. We already sent in every test and assessment Alex has ever had, plus a 16 page current intake. When we leave we will have a 22 page report, possibly a different diagnosis from basic autism, and hopefully a very specific plan of action. In that report we hope to see a clear picture of where our son stands on the autism spectrum, and what his capabilities are likely to be. Are we crazy to be aiming towards college? Do we have a prayer for an independent life? What, exactly, is it going to take to hit his highest potential? I know that life is actually a crap shoot. I know that nothing is guaranteed. I know that plans are not to be depended upon. But I have to try. We have to go for it. Alex is too charming, and funny, and unique, and wonderful not to give him the gift of our complete and total devotion. We will not let him sink just because some "experts" in our home town have assumed that an autism label is also a "you will never succeed at being independent" label. "We shoot for adequate" is not the educational philosophy in our home, as it is in many special education departments. We shoot for the moon, instead.
So, off we go. Alex, and Mom, and Dad. We are leaving behind the snow. The five degree temperatures. The wind and ice. Also the skiing, and the woods, and the wood stove. It would have been a lovely winter break at home, with temps heading up to the 20's soon, and many play dates to be had. But it's okay. Santa Barbara will be nice. We will sweat it out at 40 to 65 degrees, and get some sun block for our pasty selves. We will see palm trees, cool flowers, beaches, and ocean. Smell the salt, and peel off about 12 layers. There is a pool to swim in and a beach to walk to from the hotel. And Disney should be a riot, especially with my best friend from growing up who lives in LA. I am a little afraid that the place might make a lasting impression on Alex, and some day he might want to go to college there. But really, that is the least of my worries. We are off tomorrow, and hopefully we will continue to find the world.
Thursday, September 6, 2012
Swimmin' in Lake Superior
Alex and I have gotten in a delightful routine of swimming at the beach on Lake Superior. There is an access trail from the old fire hall, about half way down Park Point. The sand is golden and endless, and the sand dunes to the beach are tufted with beach grass that may have been there for thousands of years. The walk up and over the dunes is calm and beautiful. And then the lake.
Lake Superior. The name says it all. The view from the beach looks North East, 240 miles to Canada, bounded by gentle hills on either side, opening up from 14 miles wide at the beach. The beach at the fire hall access is very shallow, and warms up nicely. Warm being an awesome 65 degrees yesterday. That is quite the warmup when you realize the average Lake Superior temp is 42 degrees, year round.
We show up, we drop our gear on the barely populated beach, and we hit the water with boogie boards in tow. Usually there are not waves, but sometimes we get lucky. Alex is always the first one under water, I generally follow with a holler or two. Once in, it is quite pleasant. Alex is an underwater fish, I like to float about, often on both boards. We cruise out to deeper water, it takes about 20 feet to get to chin deep for the little guy. Then we are under, and up, across, and down. He has started climbing on the boards so I can tow him while he balances. He becomes a shark and chases me. He says, "Under water, now!" and down we go to sit for a bit. He is not a deep water swimmer yet, doesn't like being in over his head, but he can swim underwater and down beach for a long ways without touching. He loves it, and it is a joy to be with him out there. I have never been in the lake just swimming so much in my life, and it is good.
Swim season is likely ending. The nights are getting awfully darn cool. But when a North East wind blows that warmed up water from the 70-80 degree daytime temps, there is still a window of opportunity. Every time we have swam in last week, I think it is the last. And then the lake surprises me again. Kevin has gotten in on quite a few swims as well, and we've all gone together a time or two. The beach is our recent go-to activity, and is sure is a good one. Especially last evening, when Alex insisted we go after supper because the web said the lake was 65 degrees. Warmer than ever! The air temp was a bit down, but the setting sun made it all worth it. Especially watching Alex dive under with his little butt in the air, working it hard to get under that clear, clear water. His technique is far from perfect, but it works, and is oh-so-cute. The grins when he pops back up are priceless. Yes, the season may be about over, but it as been stellar while it lasted.
We are now truly addicted to the Fire Hall beach. 22nd street, to anyone living in the area. Lake Superior, thank you for a lovely end to a great summer. When the swim season is finally over and hypothermia water moves in, we will have no regrets for this year.
Lake Superior. The name says it all. The view from the beach looks North East, 240 miles to Canada, bounded by gentle hills on either side, opening up from 14 miles wide at the beach. The beach at the fire hall access is very shallow, and warms up nicely. Warm being an awesome 65 degrees yesterday. That is quite the warmup when you realize the average Lake Superior temp is 42 degrees, year round.
We show up, we drop our gear on the barely populated beach, and we hit the water with boogie boards in tow. Usually there are not waves, but sometimes we get lucky. Alex is always the first one under water, I generally follow with a holler or two. Once in, it is quite pleasant. Alex is an underwater fish, I like to float about, often on both boards. We cruise out to deeper water, it takes about 20 feet to get to chin deep for the little guy. Then we are under, and up, across, and down. He has started climbing on the boards so I can tow him while he balances. He becomes a shark and chases me. He says, "Under water, now!" and down we go to sit for a bit. He is not a deep water swimmer yet, doesn't like being in over his head, but he can swim underwater and down beach for a long ways without touching. He loves it, and it is a joy to be with him out there. I have never been in the lake just swimming so much in my life, and it is good.
Swim season is likely ending. The nights are getting awfully darn cool. But when a North East wind blows that warmed up water from the 70-80 degree daytime temps, there is still a window of opportunity. Every time we have swam in last week, I think it is the last. And then the lake surprises me again. Kevin has gotten in on quite a few swims as well, and we've all gone together a time or two. The beach is our recent go-to activity, and is sure is a good one. Especially last evening, when Alex insisted we go after supper because the web said the lake was 65 degrees. Warmer than ever! The air temp was a bit down, but the setting sun made it all worth it. Especially watching Alex dive under with his little butt in the air, working it hard to get under that clear, clear water. His technique is far from perfect, but it works, and is oh-so-cute. The grins when he pops back up are priceless. Yes, the season may be about over, but it as been stellar while it lasted.
We are now truly addicted to the Fire Hall beach. 22nd street, to anyone living in the area. Lake Superior, thank you for a lovely end to a great summer. When the swim season is finally over and hypothermia water moves in, we will have no regrets for this year.
 |
| Close enough to be considered a picture of "our" trail and beach. Park Point sunrise, Lake Superior. |
Tuesday, September 4, 2012
The First Day of School
Alex awoke for the first day of school in a chipper mood. He did not make breakfast and deliver it to his parents, like yesterday, but he did pop out of bed and go about his business. Today is the first day of big changes, and I had anticipated some resistance or anxiety. He will be riding the bus again, after having a whole year off. He will have a new routine at school, no more breakfast, or staff watching out for him getting to class. He is on his own, independent with back up as needed, and a focus on staying with his class at almost all times. I am nervous as hell, and he is taking it all in stride.
So, there we were on the sidewalk, Mom, Dad, and Alex, playing Simon Says and waiting for the bus. Watching the birds eat berries off the Mountain Ash tree. Taking pictures. Running back in the house to grab this and that. Normal. Ridiculously normal. Alex got the tiniest bit worried as the bus pulled up, and wanted me to get on too. So I did, since I know the driver, used to drive bus myself, and used to get on every day when he was littler and needed me to guide him to his seat. I stayed about half a second. Long enough to say hi to all aboard, and watch him bounce into the seat up front. Then he's yelling bye, I'm hopping off, and away they go.
I don't know how all the big changes will shake out, but I am cautiously optimistic. Simon Says is a very good sign. His copy cat skills may be close to fully functional. We have been coaching him at home on who to copy at school this year. He has a wonderful seat mate. Her name is Maria, she is serious and kind, and has been friendly with Alex since Kindergarten. She is the number one he is to copy. Lucas is number two, his best friend from last year and this summer, as long as they aren't trying to play Star Wars in class. He is also well coached on going to friends for questions, as typical kids do, then asking the teacher. His last line of defense this year is to be the Paraprofessionals in the room. Joe or Rebecca will be in the class, and hopefully will be doing guidance from far in the background.
He is used to having lots of special treatment, and we are betting on his increased skills with peers allowing for him to slot in happily to regular treatment. His attention span has increased to near normal when activities are engaging. His motor skills have improved to near typical level for gross motor and fun stuff, like games, balls, running, hopping, skipping, and rock climbing. Fine motor is yet to be conquered, his writing still sucks, and his drawing is at a pre-school level, but I got him to play with playdough yesterday. I take that as another good sign. He was averse to many fine motor activities before, and now he is open but behind. He even did some spontaneous gluing last week. Next I will work those pesky scissors. We will get there. Perhaps with his increased copying skills and decreased learned helplessness he will get inspired to tackle some of those difficult activities in the regular school day.
Don't know. I don't know. School doesn't know. Alex doesn't even know. But I have great hope. Hope that we will continue to go beyond limits. Hope that his strengths will get stronger, such as his enthusiasm, kindness, and courage, and that his deficits will continue to diminish. Not to zero. That will never happen. But that doesn't happen for anyone. A wise teacher once told me that no one gets ahead by focusing on their weaknesses, but rather by developing strengths. Alex certainly has his limits, at this time, and I am sure they will come out as the new year progresses, but his new skills and strengths are so exciting that I know we will find a way. What way, I don't know, but a way there will be. With a kiddo this chipper, and excited, and switched on there has to be. School is always a challenge, but so much potential to for joy too. If we are very fortunate, all the big changes will add up to another big step towards just being another regular, spectacular, kid.
So, there we were on the sidewalk, Mom, Dad, and Alex, playing Simon Says and waiting for the bus. Watching the birds eat berries off the Mountain Ash tree. Taking pictures. Running back in the house to grab this and that. Normal. Ridiculously normal. Alex got the tiniest bit worried as the bus pulled up, and wanted me to get on too. So I did, since I know the driver, used to drive bus myself, and used to get on every day when he was littler and needed me to guide him to his seat. I stayed about half a second. Long enough to say hi to all aboard, and watch him bounce into the seat up front. Then he's yelling bye, I'm hopping off, and away they go.
I don't know how all the big changes will shake out, but I am cautiously optimistic. Simon Says is a very good sign. His copy cat skills may be close to fully functional. We have been coaching him at home on who to copy at school this year. He has a wonderful seat mate. Her name is Maria, she is serious and kind, and has been friendly with Alex since Kindergarten. She is the number one he is to copy. Lucas is number two, his best friend from last year and this summer, as long as they aren't trying to play Star Wars in class. He is also well coached on going to friends for questions, as typical kids do, then asking the teacher. His last line of defense this year is to be the Paraprofessionals in the room. Joe or Rebecca will be in the class, and hopefully will be doing guidance from far in the background.
He is used to having lots of special treatment, and we are betting on his increased skills with peers allowing for him to slot in happily to regular treatment. His attention span has increased to near normal when activities are engaging. His motor skills have improved to near typical level for gross motor and fun stuff, like games, balls, running, hopping, skipping, and rock climbing. Fine motor is yet to be conquered, his writing still sucks, and his drawing is at a pre-school level, but I got him to play with playdough yesterday. I take that as another good sign. He was averse to many fine motor activities before, and now he is open but behind. He even did some spontaneous gluing last week. Next I will work those pesky scissors. We will get there. Perhaps with his increased copying skills and decreased learned helplessness he will get inspired to tackle some of those difficult activities in the regular school day.
Don't know. I don't know. School doesn't know. Alex doesn't even know. But I have great hope. Hope that we will continue to go beyond limits. Hope that his strengths will get stronger, such as his enthusiasm, kindness, and courage, and that his deficits will continue to diminish. Not to zero. That will never happen. But that doesn't happen for anyone. A wise teacher once told me that no one gets ahead by focusing on their weaknesses, but rather by developing strengths. Alex certainly has his limits, at this time, and I am sure they will come out as the new year progresses, but his new skills and strengths are so exciting that I know we will find a way. What way, I don't know, but a way there will be. With a kiddo this chipper, and excited, and switched on there has to be. School is always a challenge, but so much potential to for joy too. If we are very fortunate, all the big changes will add up to another big step towards just being another regular, spectacular, kid.
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