I love nine year olds. They are the bomb. Tonight we took two other boys, Lucas and Beckett, with us to a baseball game with Alex. It was a riot. They were all hopped up on candy and the excitement of a playoff game in the farm leagues. Lots of music, action, and errors. Fans screaming and stomping the metal stands. It didn't really matter if we won or lost. The boys were happy to hang with us parents, but also kind of did their own thing. They danced, played tag, tickled each other, and had staring contests. Beckett was practicing hard to blow bubbles, and kept getting gum stuck all over his face. The boys and Kevin were having so much fun they almost got klarned on the head by a foul ball. It bounced away and some kids under the bleachers got the prize. We stayed for the whole game, well after dark and our usual bed time, and only had to mange our son a few times when he got too wild and would not stop dancing and singing during tense game moments. He also was a bit of a pill in the car on the way back, but the other boys did not care. It was a lovely night.
We have been amping up the social interactions this summer. Well, we've been amping up everything, really. Social stuff, sports, chores, and behavioral expectations. In California we realized we need to rely on others to teach him many things, but we need to get him there and let him try. Even if it is hard. Even if he is the odd man out who does not "get" things like other kids. He does not learn the same way, but learn he does. We have taken on lesson from others in downhill skiing, jujitsu, and soccer. Continued lessons in nordic skiing and swimming. Further lessons have come in the form of acting camp and drum lessons. He has not become a prodigy in anything, although he is a fine rock and jazz drummer for age nine. Lots of musicality coming out. But always in his own way. With soccer we joined our first "herd"sport, as my husband says. And it has been marvelous. He joined the team without hesitation. He is rather lost, but never down. Not real aggressive, but fortunately he is not the only one in that zone on his team. He still stands out, if you pay attention, but can sometimes blend in too.
This week Alex demanded a play date. "I want a play date today!" This from the kid who has always preferred to retreat to his room. The one we needed a stunt double to open gifts at his early birthday parties because it was just too stressful. The kid who would hide when other kids showed up to play. We have turned the corner, and it is because we have pushed it. "Stretching" him, as Temple Grandin recommended. Stretching ourselves too, because seeing your kid rejected is about the worst thing in the world. Partly success has come because he has been ready. In second grade he and Lucas became friends, and that was his first spontaneous and full friendship. He was ready to make a close friend, and Lucas was new to school and had a desire to have a friend who was not tied up in school drama. It has been a prefect match. They were tight all through third grade, and even though we are changing schools we plan to keep Lucas. We will make sure we see him on weekends and breaks.
But we have also started expanding further this summer. More play dates, and more kids on the roster. More sports, and more events. We spent the whole day at the Carlton County fair, when in the past we would have kept it shorter to avoid serious melt down. Real or imagined, it is sort of hard to say. Alex would act anxious so we would help him to avoid things. But that became a trap, because we were always on the lookout for the perfect situation, and got boxed in by our avoidance or leaving early from things. Then he did not learn he could actually cope, and neither did we.
This is all common stuff for kids on the Spectrum, and common for some kids off the Spectrum too. It would be a lot easier if we had had starter kids, oh well. As it is, it feels like we are nipping in and out of the typical world. This summer has been filled with typical kids. Nine is a great age. Independence struggles are starting, but snuggling is still possible too. The kids are not totally on their own, but they demand some autonomy. Every independent move by our guy is silently cheered, and even the mistakes are mostly cherished. Lots of spills and mis-calculations, like when he made liquid pancake batter, the coffee disaster of June when he tanked a whole pot, and dropping that whole quart of pineapple juice and yelling at me to clean it up. He poured water in my muselix, instead of almond milk, and made nasty oatmeal the next week for all of the house. And he has been telling us off. Some mistakes are remedied, like all the food, others earn time outs, like all the sass. But still, we move forward. Upward and onward, as they say.
Alex still has many quirks, and much to learn, but it seems we are making real progress. We start with our remote sessions with the Koegel Center next week, and they will keep us honest and growing. He starts a new school at the end of the month, and that will take him to the next level too. New kids, new teachers, new expectations. Keep the best of the old, move on to the new. The grand adventure continues. For now, it is late. We are post ball game, our home team did not win, it's a shame. But the three boys sleeping in the attic didn't really care. They cared much more about pop corn, having fun, ice cream at home, playing a board game when they got back, and having a massive light saber battle up stairs. Tomorrow it will be pancakes and water balloons. We will stay typical as long as we can.
Showing posts with label Moving Towards Typical. Show all posts
Showing posts with label Moving Towards Typical. Show all posts
Saturday, August 17, 2013
Tuesday, July 16, 2013
Optimal Outcomes
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.
"...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.
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, 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.
Thursday, August 23, 2012
Camp
The Miracle continues. Alex had a fantastic time at camp. His first overnight camp has been accomplished and it was marvelous. It has all come together so neatly. I was supposed to work while he was dropped off by his dad, but I was able to get out early and join them on the way to camp. We got there early, because his dad was in charge, and he was the first kid from his cabin to arrive. His best friend arrived shortly thereafter, and they were able to pick top bunks next to one another. What joy! Lucas had the bunk in the corner on the left, Alex was to his right. I could imagine from the start these little boys chatting with each other from bunk to bunk, trying to get to sleep at night, waking up in the morning light. Such adventure. They could not wait for their families to leave.
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| Notice Yoda in on the bunk too. Lucas forgot any stuffed friends, but said, "I'll be all right." |
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| Birch Cabin. Bunks and a fireplace. And boys, boys, boys. |
So leave we did. It was hard. Kevin had to just about drag me away. I wanted to stay, and spy, and be part of camp too. But I left. Took a deep breath, and left. You are supposed to let them fly, right?
And fly they did. Alex must have, by the smile on his face when we returned three days later. And dare I say, he stood a bit taller too. I don't know how easy or hard it was for him. But from the report from his counselor he did great, and Lucas did too. I may have to scan Alex's letter from his counselor in some day, it had so much good stuff in it. He participated in camp. He did all the activities and loved them all. He even rode a horse this time, and went on a trail ride through the woods. At day camp that was the one thing he refused. He finally did it, for 150 bravery points. He got up early every day to play field games, cleaned up in the dining room, sang all the songs, and even ate a hot dog. Somehow he kept track of all his stuff, never even lost his retainer, and got from place to place with out an aide. He even bought a Camp Miller sweatshirt with his birthday money at the camp store, all on his own. Let's not forget the swimming too, and kayaking as well. And most of his time paling around with his best friend. Activities all day, and big campfires at night with songs and s'mores. There is so much I don't know, but am taking it on faith that the staff was not just blowing sunshine, and he really did great. They both did. Alex did not hit the archery target yet, unlike Lucas, but he did not seem disheartened. The weather was beautiful. The bugs were minimal. He climbed the tower, and won a game of Ga-ga. And then the "week" was over. We came to pick him up, and have a closing picnic. He was whole, and healthy, and not traumatized a bit. Lucas was smiling, they remain fast friends.
It was a mini-camp, three nights and days, so the numbers were small and the campers were all young. The perfect size start. Lots of counselors in blue, and their T-shirts read "Professional Role Model" across the back. There was a camp fire to close with, of course, because that is what we do in Camp in America. Time for skits, songs, and awards.
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| Preparing for the stage. |
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| Birch Cabin got to do their skit "Pebbles". |
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| Counselors singing a goofy song. |
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| The crowd singing it back. |
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| The Dynamic Duo with their First Year Camper ribbons. |
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| Our happy Camper. |
Respect. Honesty. Responsibility. Caring. Those are the four core values at Camp, and he did well with all of them. He was sad one night, his first I think. Sad and homesick. Sad enough to bring in his day camp counselor from another cabin. I can imagine it. She was called in for rescue. She took him outside, and they walked, talked, sat down. He must have been exhausted, ready to run for home. But he didn't. She calmed him, and sent him to bed. And that was it. Our one bump in the road, and then back to camp as usual with his best friend. No special staffing. No extra support. One great friend, to whom I will be eternally grateful, and one great program. Half a week away from home. Under the big pines. On the water. Learning how to adventure, and learn, and laugh on his own. Having a good friend, being a good friend, and learning to slot in with a whole group of awesome people. If he can do this, what else might the future hold?
Thursday, August 2, 2012
The Great Camp Experiment
This is it. The miracle is happening. I don't know what kind of conditions and work it will take to make the miracle permanent, but for now I am just riding the miracle wave.
Let me back up. Nine months ago I was inspired to send Alex to camp this summer. And not just camp, but Camp. An ultimate Camp. Out in the woods, with counselors, kids, and all the traditional activities. At the time we were attending the Winter Camping Symposium at Camp Miller. The Symposium is something my husband has been attending and now coordinating for many years. It has been a venue for die-hard winter campers to get together in the late fall and get pumped for the coming winter season. It has been held in many locations over the years, and had landed at Camp Miller, a traditional YMCA overnight camp. The kind with woods, fields, cabins, a dining hall, and a waterfront on a beautiful lake. It also has canoes, kayaks, a swim platform, and a sailboat or two. And fire rings for many campfires, big and small. Plus fun extras like a climbing tower, horses, barn animals, arts and crafts, high and low ropes, archery, and riflery. And equipment for games, games, games. It is A Camp. We were there in the off season, as a family, and for an alternate purpose, but I got tingly just by walking around the grounds and seeing it all. I am an old Camp person myself, and Camp to me is the lifeblood of summer and childhood. I started dreaming about Alex having a real Camp experience.
But I was fully aware of the challenges. Camp is about adventure, and independence, and friendships. All of those are very hard for Alex. How could he ever go to camp if he does not know how to play, and playing with new friends seems impossible? How can we get him to Camp, if leaving home and routine I painful for him? How can he go to Camp, if he has always had a parent, or Para, a Buddy, or trained professional to look after him? Challenging indeed, but once I met the dynamo Camp Director, Bridgit Marushka, I began to think it could be done.
First we brainstormed. Camp Miller is a traditional overnight Camp, where kids go for a week and stay in cabins with their age group and gender. Camp is open to kiddos going into second grade all the way through high school. There is a progression, and by high school they are either Counselors-In-Training or off on wilderness trips. Since Alex is going into third I figured we would be in the perfect starting age group. But I knew just dropping him at Camp cold would never work. That is hard for most kids, and would have lead to paralysis or meltdown for Alex, or both. Whether or not he could have recovered from the shock and gone on to love camp was not a toss up I was willing to risk. No, there had to be a way to ease him into it. Bridgit provided many options. She promoted the ASD Family Camp, where the whole family gets to participate in activities at their own pace. It seemed like a great start, but did not end up working with our schedule. Bridgit said I could come as a parent volunteer for overnight Camp, or even stay in a cabin with Alex at night and he could participate in the daytime. These seemed like good fallbacks if he was losing it, but the full program at once still seemed like a bit much. Then I learned about the Mini-Camps and also Day Camp. The Mini-Camps are Sunday to Wednesday and geared to the younger beginner at Camp. And the Day Camp sounded like a dream. Day camp, with all the benefits of the full Camp grounds and activities, but the security of going home at night. It even turned out to be quite a bit cheaper than the day camp in Duluth. The only hitch was having to transport him. An hour. Each way. But to me, that seemed like a price to pay that I could manage. And I began to consider that I might be able to find a friend to go to camp with him, since it is such a beautiful camp and the Day Camp program is actually much less crowded and chaotic that the one in town. And did I mention it is cheaper? Like by half.
So a plan began to form. Find a week for Day Camp, and then follow it up with a Mini-Camp. Have the option for me to slot into the camp activities if it was just too overwhelming for Alex. And start working on finding a friend to attend with him, especially for the Day Camp portion which would be an easy sell. Easy, right? Well, maybe not, but worth a try. I knew the friend part might be rough. Not because Alex has no friends. He has plenty that would be interested in the experience. But to find one that would have the same week open, and could get to our house every day at 7am for the one hour ride to camp, well that was a stretch. And in the back of my mind I wondered if that same friend would want to attend the Mini-Camp too, but that was a bit too much to even hope for. Especially since we were quite limited on which weeks would work, due to Acting Camp, a two week Swim Intensive, our two week trip out East, and not wanting Day Camp and Mini-Camp to be right on top of each other. We're busy, and limited, and so is everybody else. Would there be a chance? This is where part of the miracle resides.
Fast forward to this week. Summer itself has been ticking along just fine. Many wonderful experiences have been had. All previous activities counted as successes. A few ups and downs here and there but an overall great summer with many more ups than down. I have been feeling calm, and confident. Relaxed, and excited. And now, downright ecstatic. The whole Camp Plan is working out even better than I had dreamed. Alex's new friend Lucas (and his mom, Jenny) joined the camp plan with smiles and excitement all around. Jenny is an old camp counselor herself, so she knows all about the magic. All I had to do was tell her about the opportunity and bam, Lucas was signed up for Day Camp. Lucas is a wonderful kid, and he and Alex struck up a friendship at school this last year. Not just an ordinary friendship, but dare I say a best friend? I don't want to downgrade Alex's other friends, but this is his first solid friendship that they developed themselves. We did not know his folks, and these boys were not forced in any way to hang out together. They figured it out themselves, and they are a joy to watch pal around. Lucas does not care that Alex has limited language usage, flaps his hands when he is excited or nervous, or that he can get worked up over seemingly minor issues. They play, and laugh, and play some more. Alex does not bring a lot of social drama with him, he is mostly friendly and kind, and Lucas appreciates this. And the same can be said of Lucas. He just wants to play, he not into dominating others, putting anyone down, or friending and un-friending others to see who is king of the hill. Easy going, smart, verbal, and fun, what a guy. Super excited about camp, too. And nervous at times, so he and Alex balance each other out nicely.
With Lucas on board the only other challenge was camp itself. How would they react? Would they like it? What about the other 15 kids at day camp this week? So many things that could go wrong, and haven't. The staff is top notch. The program is perfectly planned. And the weather has even been cooperative. I was ready to stay. I was ready to play background smoother and helper. I was ready, and I wasn't needed. Day one, we pulled in, signed in, and met the staff and kids. Alex looked around, stood next to Lucas, and said, "Pick me up at 4." I had a quiet meeting aside with the staff and they promised to call if there was any trouble. I took Jenny on a tour of the camp while the boys trooped off, cell phone in my pocket. Life under the big pines was beautiful. After an hour I went home. My phone never rang.
The miracle had begun. Alex and Lucas had a marvelous first day. Both were excited and exhausted at the end of the day, driven home by their mom's and wanting to drive together the next day. I got to drive them in day two, laughing, goofing off, and being a general riot in the back of the car. Being typical boys. Typical. Miracle. At the end of day two I cornered the day camp director for a specific report on Alex. How was his behavior? Did he have trouble spots? What could I coach him on? "Nothing" she said. Nothing to report. No problems. "He's just like a typical kid.", "He's totally into all the activities.", "He's chatty with everyone.", "He's one of the best kids we have." My heart almost stopped. I think I am still digesting it all. Rainbow, rainbow, rainbow. The camp magic is working.
And so, the miracle continues. Lucas pestered, begged, and gave his folks the big sad eyes, and he is going to overnight camp too. Both boys have done archery, rock climbing, and tons of swimming. The bugs and sun have not been too much for the two red headed boys. They come home exhausted. Both are earning "bravery points" today for horseback riding. I am calling them "The Dynamic Duo". The camp even splits them up from time to time, because they are such close friends. They are getting to know all the other day campers, and Alex has been leading the playground free time, deciding where the "space ship" or "boat" is going. I heard a little girl say, "Alex, what are we doing today?" At the end of the day, I have come close to driving off the road at their antics in the back seat. I have even gotten them to tell me a few stories about camp. When the car is empty, it has been very peaceful driving down to camp and back. I stayed at camp yesterday, all day, to meet with Bridgit about the kids program for this falls Winter Camping Symposium and kick around on my own for a bit. Today Jenny drove the boys, so I am catching up on the important things. Like clarifying how this miracle came about, and getting the word out. Rainbow, rainbow, rainbow.
It all came together. There must be divine providence at work. I am pleased, and proud. Pumped, and grateful. Inspired. I know that the atmosphere is about perfect. I know conditions are just right. But I can't help hoping that the word "typical" is not just a passing phase.
Peace out,
Beth
Let me back up. Nine months ago I was inspired to send Alex to camp this summer. And not just camp, but Camp. An ultimate Camp. Out in the woods, with counselors, kids, and all the traditional activities. At the time we were attending the Winter Camping Symposium at Camp Miller. The Symposium is something my husband has been attending and now coordinating for many years. It has been a venue for die-hard winter campers to get together in the late fall and get pumped for the coming winter season. It has been held in many locations over the years, and had landed at Camp Miller, a traditional YMCA overnight camp. The kind with woods, fields, cabins, a dining hall, and a waterfront on a beautiful lake. It also has canoes, kayaks, a swim platform, and a sailboat or two. And fire rings for many campfires, big and small. Plus fun extras like a climbing tower, horses, barn animals, arts and crafts, high and low ropes, archery, and riflery. And equipment for games, games, games. It is A Camp. We were there in the off season, as a family, and for an alternate purpose, but I got tingly just by walking around the grounds and seeing it all. I am an old Camp person myself, and Camp to me is the lifeblood of summer and childhood. I started dreaming about Alex having a real Camp experience.
But I was fully aware of the challenges. Camp is about adventure, and independence, and friendships. All of those are very hard for Alex. How could he ever go to camp if he does not know how to play, and playing with new friends seems impossible? How can we get him to Camp, if leaving home and routine I painful for him? How can he go to Camp, if he has always had a parent, or Para, a Buddy, or trained professional to look after him? Challenging indeed, but once I met the dynamo Camp Director, Bridgit Marushka, I began to think it could be done.
First we brainstormed. Camp Miller is a traditional overnight Camp, where kids go for a week and stay in cabins with their age group and gender. Camp is open to kiddos going into second grade all the way through high school. There is a progression, and by high school they are either Counselors-In-Training or off on wilderness trips. Since Alex is going into third I figured we would be in the perfect starting age group. But I knew just dropping him at Camp cold would never work. That is hard for most kids, and would have lead to paralysis or meltdown for Alex, or both. Whether or not he could have recovered from the shock and gone on to love camp was not a toss up I was willing to risk. No, there had to be a way to ease him into it. Bridgit provided many options. She promoted the ASD Family Camp, where the whole family gets to participate in activities at their own pace. It seemed like a great start, but did not end up working with our schedule. Bridgit said I could come as a parent volunteer for overnight Camp, or even stay in a cabin with Alex at night and he could participate in the daytime. These seemed like good fallbacks if he was losing it, but the full program at once still seemed like a bit much. Then I learned about the Mini-Camps and also Day Camp. The Mini-Camps are Sunday to Wednesday and geared to the younger beginner at Camp. And the Day Camp sounded like a dream. Day camp, with all the benefits of the full Camp grounds and activities, but the security of going home at night. It even turned out to be quite a bit cheaper than the day camp in Duluth. The only hitch was having to transport him. An hour. Each way. But to me, that seemed like a price to pay that I could manage. And I began to consider that I might be able to find a friend to go to camp with him, since it is such a beautiful camp and the Day Camp program is actually much less crowded and chaotic that the one in town. And did I mention it is cheaper? Like by half.
So a plan began to form. Find a week for Day Camp, and then follow it up with a Mini-Camp. Have the option for me to slot into the camp activities if it was just too overwhelming for Alex. And start working on finding a friend to attend with him, especially for the Day Camp portion which would be an easy sell. Easy, right? Well, maybe not, but worth a try. I knew the friend part might be rough. Not because Alex has no friends. He has plenty that would be interested in the experience. But to find one that would have the same week open, and could get to our house every day at 7am for the one hour ride to camp, well that was a stretch. And in the back of my mind I wondered if that same friend would want to attend the Mini-Camp too, but that was a bit too much to even hope for. Especially since we were quite limited on which weeks would work, due to Acting Camp, a two week Swim Intensive, our two week trip out East, and not wanting Day Camp and Mini-Camp to be right on top of each other. We're busy, and limited, and so is everybody else. Would there be a chance? This is where part of the miracle resides.
Fast forward to this week. Summer itself has been ticking along just fine. Many wonderful experiences have been had. All previous activities counted as successes. A few ups and downs here and there but an overall great summer with many more ups than down. I have been feeling calm, and confident. Relaxed, and excited. And now, downright ecstatic. The whole Camp Plan is working out even better than I had dreamed. Alex's new friend Lucas (and his mom, Jenny) joined the camp plan with smiles and excitement all around. Jenny is an old camp counselor herself, so she knows all about the magic. All I had to do was tell her about the opportunity and bam, Lucas was signed up for Day Camp. Lucas is a wonderful kid, and he and Alex struck up a friendship at school this last year. Not just an ordinary friendship, but dare I say a best friend? I don't want to downgrade Alex's other friends, but this is his first solid friendship that they developed themselves. We did not know his folks, and these boys were not forced in any way to hang out together. They figured it out themselves, and they are a joy to watch pal around. Lucas does not care that Alex has limited language usage, flaps his hands when he is excited or nervous, or that he can get worked up over seemingly minor issues. They play, and laugh, and play some more. Alex does not bring a lot of social drama with him, he is mostly friendly and kind, and Lucas appreciates this. And the same can be said of Lucas. He just wants to play, he not into dominating others, putting anyone down, or friending and un-friending others to see who is king of the hill. Easy going, smart, verbal, and fun, what a guy. Super excited about camp, too. And nervous at times, so he and Alex balance each other out nicely.
With Lucas on board the only other challenge was camp itself. How would they react? Would they like it? What about the other 15 kids at day camp this week? So many things that could go wrong, and haven't. The staff is top notch. The program is perfectly planned. And the weather has even been cooperative. I was ready to stay. I was ready to play background smoother and helper. I was ready, and I wasn't needed. Day one, we pulled in, signed in, and met the staff and kids. Alex looked around, stood next to Lucas, and said, "Pick me up at 4." I had a quiet meeting aside with the staff and they promised to call if there was any trouble. I took Jenny on a tour of the camp while the boys trooped off, cell phone in my pocket. Life under the big pines was beautiful. After an hour I went home. My phone never rang.
The miracle had begun. Alex and Lucas had a marvelous first day. Both were excited and exhausted at the end of the day, driven home by their mom's and wanting to drive together the next day. I got to drive them in day two, laughing, goofing off, and being a general riot in the back of the car. Being typical boys. Typical. Miracle. At the end of day two I cornered the day camp director for a specific report on Alex. How was his behavior? Did he have trouble spots? What could I coach him on? "Nothing" she said. Nothing to report. No problems. "He's just like a typical kid.", "He's totally into all the activities.", "He's chatty with everyone.", "He's one of the best kids we have." My heart almost stopped. I think I am still digesting it all. Rainbow, rainbow, rainbow. The camp magic is working.
And so, the miracle continues. Lucas pestered, begged, and gave his folks the big sad eyes, and he is going to overnight camp too. Both boys have done archery, rock climbing, and tons of swimming. The bugs and sun have not been too much for the two red headed boys. They come home exhausted. Both are earning "bravery points" today for horseback riding. I am calling them "The Dynamic Duo". The camp even splits them up from time to time, because they are such close friends. They are getting to know all the other day campers, and Alex has been leading the playground free time, deciding where the "space ship" or "boat" is going. I heard a little girl say, "Alex, what are we doing today?" At the end of the day, I have come close to driving off the road at their antics in the back seat. I have even gotten them to tell me a few stories about camp. When the car is empty, it has been very peaceful driving down to camp and back. I stayed at camp yesterday, all day, to meet with Bridgit about the kids program for this falls Winter Camping Symposium and kick around on my own for a bit. Today Jenny drove the boys, so I am catching up on the important things. Like clarifying how this miracle came about, and getting the word out. Rainbow, rainbow, rainbow.
It all came together. There must be divine providence at work. I am pleased, and proud. Pumped, and grateful. Inspired. I know that the atmosphere is about perfect. I know conditions are just right. But I can't help hoping that the word "typical" is not just a passing phase.
Peace out,
Beth
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