Autism recovery can happen! A parent's experience with High-Functioning Autism. Diagnosed at 2 with PDD-NOS, and recovered by kindergarten. Articles and documentation by Ashley Morgan, mother
Sunday, April 1, 2007
11 to 12
January 15th, 2010
This is my first post of the new year. So much newness! A new house, school, community. And Leo is 11!
The kids LOVE it here, although they miss their friends. My biggest concern, of COURSE, was my big boy. Would I undo all that we've done? We moved largely to be out of a tick endemic area. Which kid is most important? Upsetting the apple cart vs. having a cleaner environment for my daughter?
Fortunately he seems to be thriving, also demonstrating there are no holes in his programming and that his recovery is real. Out of his comfort zone of the same kids, school, neighborhood, and community. It amazes me how he has the confidence and adaptive skills to adjust to EVERYTHING being new.
The cleaner environment seems to help HIM in addition to Sydney, as he does struggle with his bacterial load, including a lyme co-infection Mycoplasma fermentans. He is asymptomatic about 95% of the time (tic-free, headache free).
Leo continues to love sports, loves playing basketball and baseball. Still amazes me he can do it and CHOOSES it after he had such a hypersensitivity in his face for everything, let alone flying objects. He is actually good at it! And again, with completely different kids in a different league/culture. Another adaptation.
Leo had a very successful class birthday party (just the boys) at our local gym. I can't believe he is 11 and that puberty is around the corner. Our next milestone. Grandma visited and so his birthday celebration was big in spite of being in transition.
We are still in LYME HELL with my 8 yr old daughter, but she has made progress this past year. We are beginning year 2 of her treatment. My goal is that she is pain-free by year 3 - seems to be a fair marker. So, I spend all day doing the things you know i am doing as a parent with a special needs child.
The kids play every day with the neighbor kids in our new cul de sac. It's so surreal to me, how happy they are running around, knocking on doors. Going back and forth between houses. A really really nice group of kids (so far, I am in the honeymoon phase!)
The kids have their own room, and as you can imagine they relish their new TURF. It's very cute how they are coming into their own as they mature.
I unpacked my homeopathic school books - I hope to start studying as things calm down settling into the new house. It'll wax and wane as Sydney's needs vary.
All in all I am happy with the new year, and hopeful that Leo will continue to thrive and that Sydney continues making progress toward recovery.
September 24th, 2010 (2 weeks into 6th grade, almost 12 years old)
So far Leo is doing amazingly well in his first year of middle school. I recall being so miserable this age! He is relaxed and confident, and at this point really likes all of his teachers, especially his homeroom. His personality immediately matured once school started, almost as if he was trying on this older persona to fit the bill. He really seemed to think he was a big shot.
He knows several kids in his class from elementary school (there are 5 feeder schools), and is now mentioning a boy from a different elementary school that he is "starting to become friends with." Yeah! His teachers seem really motivated and youthful and also parents themselves. Always a help!
Right away Leo memorized his schedule, didn't need to look at it after day one. He is amazing with directions and location, he never got lost. He seemed unfazed by having to switch classes.
The bus was our biggest concern - Leo did NOT like how long the ride was, and how it drove 20 miles an hour and stopped so many times. He had a huge headache the first couple days but now he's adjusted. He has learned how to move around to sit with friends as people get off, and keep himself entertained for the almost hour ride home. I said to myself that I'd give him 2 weeks to adjust, and if he still didn't like it I'd drive him. After a few days he loves it, a big social time for the kids. Recess and lunch is so short, the only real time the neighborhood kids can connect.
I loved helping him put together his multiple class binder with tabs and all of his grownup supplies. No more crayons! He loves that he needs a scientific calculator and is proud that he is in advanced math. Thankfully the school emphasizes organization - he writes in all of his assignments in a calendar and each teacher has a web page with links and the homework and even grades. Designed just for me and also Leo.
The math teacher is a classic math nerd, and seems to be one of our people. She is really dedicated and encourages kids to hang out in her class at lunch and ask for help. Leo really likes her, so I am happy that he can have fun with math again, his favorite subject and also his best strength.
Leo prefers to take lunch, although he is healthy enough to eat cafeteria food. He doesn't like a big production since there are always lines and cuts out of table time. He plays some kind of sport at lunch and that too is organized, so he is having fun.
Class sizes are big (28 in most classes, up to 50 for band and technology). We are looking at this year as a placeholder to see how he does. Will he thrive in large classes with so much independence? He qualifies for the "gifted" program (I really hate that word since all kids are gifted in different ways), so we can always look for those programs for next year if needed. Always hard to know what to do, but at least we are lucky to have choices. So, we went with a social decision - to have him go with the neighbor kids.
I do miss the emphasis on education from back east. There is less money per student here and so the schools are not as good as what we were used to. I do want him to have choices for college and really have a solid base to fall back on. I didn't, and had to take several remedial courses to be prepared for certain college courses. But I am getting too ahead of myself!
It's been a year since we moved from New England to the beautiful North West. Leo has friends, is identified still under the "jock" group. He has no best friend, just a few good friends. His best friend from back east visited this summer. They had a blast! We were so impressed how Leo was able to maintain a long-distance friendship at 11 years old. Phone and Skype. A true deep and lasting friendship.
Leo continues to play baseball, his first love, but is enjoying his Fantasy Football League and watching ESPN with his dad. He has also taken up hiking and camping with his dad, such a nature lover. He now walks with me on weekends up the hills in our neighborhood - a real workout for me!
Health wise, Leo is doing well. We continue to eat organic whole foods whenever possible, and eat gluten and sugar on occasion, usually for social reasons or going out to dinner. Unfortunately, Leo began having symptoms of Lyme disease back in February, so we started him on an anti-microbial regiment that includes antibiotics, and herbs/homeopathics for support. We are happy to be living out of Lyme Land, and are hopeful that by next year the microbes will be under control, including strep and mold. In some ways, he is no different than any other "normal" kid out there physically, except that he takes a boat load of pills.
I have seen shades of pre-adolescence, and recently Leo asked me to buy him deodorant. He is growing up! I no longer feel as anxious as I used to feel about going through puberty. I am confident he will maintain his functioning level, barring anything unusual happen with his Lyme. He has barely any symptoms - occasional facial tics that come and go when he is getting sick or nervous, or going through a die-off cycle with the Lyme.
And speaking of Lyme, I heard Leo recently tell his friend about his sister's condition (she has Chronic Lyme and was very very ill, but is now pain-free and doing well). Leo said "Can you imagine, having a headache that never goes away for 2 years?" Not to mention all her other 17 symptoms she had of pain. His empathy and deep understand of what our family goes through and had to go through really moved me. Such empathy, in a kid that used to have autism!
Sydney, Leo's 9 year old sister is doing very well. She is now pain-free, losing all her chronic symptoms this summer. Pretty exciting! She does get flares each week, but they are minor, and are only one or two symptoms that last about 4 to 5 hours. Her pathogen load is very low, and we feel we are close to remission. She will continue on her Chronic Lyme regiment for at least one more year. Lucky for us, we have great doctors that we see each month and she is steadily improving. She plays soccer and has 4 dance classes a week, not to mention lots of play dates and playing with neighborhood kids. She is really enjoying her newly found endurance, and is rebuilding her strength and stamina. She is free from pain, and we are all overjoyed.
Lastly, I should mention we had a great end of elementary school. I never got a chance to post about it. I was a blubbering mess as usual. I couldn't stop thinking about how much he has gone through, and now today he lives a normal life and has just "graduated" elementary school. He is in line with the other kids, laughing and joking around, high-fiving the teachers. So much pain and suffering, so much chaos long ago. Incredible.
Leo did get a little homesick for his old school the last couple weeks, and regretted not being able to graduate with his friends. He was positive but realistic about graduating with kids he didn't know every well. He prefers our current life, and is very wise about the dangers of Lyme and his weak immune system. He had a great summer - lots of site-seeing and hosting friends and family. Their turn to visit us instead of visa-versa. He loves having his own room and enjoys a more urban experience.
I make sure to tell him how much I love him and how proud of him every day. This is usually right before he waves me away while he meets up with the neighbor boy to go to the bus in the morning.