Sunday, April 1, 2007

10 to 11 Years (New)

November 5th, 2008 - Day One of Obama as President Elect
4th Grader, 10 Years Old, Fall Update

It's been a mellow beginning of the year for Leo. He seems to like school much better. I think he "gets" his teacher now. He tells me that he learns a lot from him and is very funny, but that he can be very boring. And that 4th grade is boring. I can't blame him. I am thankful his seat is in the front row next to the window. He gets ventilation and the ideal seat for a visual learner. He actually likes violin, an option he can do that requires a pull-out. He and his BFF signed up as a way to get out of being in class, but now he actually enjoys it.

We too "enjoy" the enthusiasm at home in our modestly sized home where there just isn't any escape. He's also gotten back into his acoustic guitar thanks to the people over at Guitar Hero. I say "thanks" to that, but a real thanks to introducing my kid to music I actually love from the 80s.

More about school - he seems to work a little harder this year at homework, taking I'd say 5 to 10 minutes longer. New for Leo, more thinking required rather than execution. Although 4th is more of a repeat year, I can see it's more challenging for him. I continue to monitor, and take note of the geometry assignments that come home that are very frustrating for him. As I've posted before, our strategy is reminding him about the big picture - most things come easily to him, many people take lots of time and struggle on most things, but for him this isn't the case.

We celebrated small this year for Leo's 10th birthday. Yes, I have a child that has a two digit age. I can't believe it! We let him choose one friend to go to a local hockey game with, along with Sydney, his dad, and his cousin and Uncle. The game was great, and he said how he actually liked it better that just one friend was there rather than lots of kids. I think he found it more meaningful and a calmer time. Of course he chose his BFF to go to the game.

These boys are inseparable. They call each other right off the bus, they talk on weekends, email each other. They have a secret code in class for various boy explusions. I can't recall exactly, but it goes something like this: You quietly "cough" to alert the other boy, then slyly hold up a finger indicating what bodily function just occurred. One finger is a burp, two fingers a fart, and so on. I think there's a signal for when you are bored, and when to call the other one an "ass". I treasure all of this, and appreciate the boyhood humor. The finger signals have expanded to two other boys, so let the fun continue! They discovered how to look up bad words in the class dictionary, so they have fun with the exact definitions. Ass is their favorite, and recite the specifics of what a rump is. They giggle and chat about it every day.

Fall Ball was fun and has finally ended, so our days are fairly simple until basketball starts (my idea). Leo just has to carpool with me for Sydney's ballet and hip-hop classes. He still loves coming home and unwinding by going outside to play "imaginary football" where he makes up games in his mind and runs around doing plays. I still consider this a stim, a way for him to transition out of school and let his mind have a break. Yale doesn't since it's appropriate play that's not obsessive, but I see it differently.

On the health front, Leo hasn't been sick all year, and his facial tic (mainly his eyes) are minimal. One kid noticed early on in the year, naturally this was his former arch nemesis-turned good friend-now just "okay" friend that rides the bus with Leo.

Emotionally, life has been a little challenging for Leo because Sydney has chronic Lyme. We couldn't stay to watch all the games or do lots of extra activities because they were limited to how his sister was feeling. I haven't spend a lot of quality time with him, at least he's had it with his dad. As the caregiver-pill-pusher-lead-researcher, I am mostly with Sydney as we go along. She is stable now, so we've "kind of" adjusted to a new life that hopefully is temporary. She has about 6 months to go on treatment (I am estimating), and is back to school regularly. For more about Sydney, go to my

Halloween was fun, of course he ran around with his BFF and his sister, hitting EVERY house this year in a certain easy neighborhood we go to. It was really cute. The conversations about what to be were challenging - he wasn't sure and wasn't into it, but in the end went as a punk rocker. His hair is pretty long now, so we put lots of gel and spray in it, he wore black bracelets and a metal belt with an ACDC t-shirt. He looked like Billy Idol, snarl and all. I figure I got a couple more years and he'll be staying home, until he's an older teen hitting parties (insert look of dread and fear here).

That's about it. Round two with chronic illness for me, so I'm not very happy right now, but I'm grateful my sweet boy is happy and doing well.

Leo had a great holiday season! He sang and played violin at the holiday concert at school. He loves to sled, share a giant bowl of popcorn, talk music and the latest gadgets, play basketball, and talk about girls and bathroom humor with his BFF and his other close friends at school. He got a flag football set and a jersey from his favorite team. Still a sports guy, he was happy. This year I had "the talk" with him and he is now knows that Santa isn't real. He was a little sad, but I told him his constant doubting questions made me think he was ready for the truth. He appreciated that.

He continues to have a blah school year, but continues to perform well at school and have fun socially. The only tiny thing we've seen is a small decline in his reading test score. This could be due to the class he's in, but regardless we are having him read more at home and read to him out loud. He's got a renewed interest in Harry Potter, so it's been fun. I only wish he'd like school as much as he did in the past, but that's a mom talking right? There's always going to be bum years.

We still have facial tic issues, but other than that Leo is healthier than ever. His recent testing indicated no deficiencies, all his numbers are even and consistent. I am not used to that! He is by far the healthiest person in the family. How ironic. I don't let myself forget my freedom from hypoglycemia and slave to the perfect foods all the time. So nice having flexibility.

Leo loves playing basketball this winter, and mom enjoys the short one hour games as a comparison to baseball. So nice! And the gym is toasty (but smelly) so I can actually really get into it. He is learning to use his size to his advantage (an inch away from 5 feet). He is also learning to be more "aggressive". He's such a sweet, gentle guy, not used to backing into his opponents, blocking them, and getting into their faces. I hope this is good for him. I don't have the stomach for sports. He loves it, so I guess it's okay! I hear it only gets worse as they get older.

The patriarch got laid off, so Leo knows we may be moving depending on job opportunities. He seems okay about it. I am trying to be brave about the thought of moving away from our safety net of good friends, his former ABA team nearby in the event he needs support. He continues to show he doesn't need anything, so I have to go forward.

It seems forever since I've posted anything. Leo can't wait for school to be over! Things are status quo, really even keel and life is good for my sweet boy. True, nothing is perfect, and for him his parents are pretty taken up by his sister's Lyme disease. But all in all, things are great.

Leo's friendships are even deeper and more meaningful with the same boys he's known for years in elementary school. They talk a lot about nothing, kind of like Seinfeld. It's really cute and so grown up. He had a sleepover recently, and for the first time I could tell he didn't share everything that went on, especially their talks before bed. I see that the world sees my baby boy differently as well. Other Dads will see Leo and say "Hey what's up." The restaraunt hostess won't give him a kids menu.

He's had a great baseball year in AAA. He is known to pitch well and is now a strong batter.The games seem a little bit more exciting than last year. His coaches are amazed how he can keep his composure, even when they've switched pitchers, bringing him in to "close" an inning if the bases are loaded. Must be that linear mind of his.

I still don't have the stomach for sports because I still remember how much harder everything has been for him and how far he has come. I worry when something big changes, or if it rains or if the field changes how Leo will handle it. So far so good. He has turned out to be very confident and upbeat as a player. He is known to rile up his teammates, getting them clapping and cheering when they are in a slump. Emerging leadership qualities (both his teacher and his coaches have said this more than once).

Leo is amazingly even keel throughout a garden variety day. No peaks and valleys as in the past. Ideally, "quiet time" as a break in the afternoon (on weekends) and regular snack breaks would be nice, but we are no longer owned by them. Maybe not as even throughout the day as the next kid, but very close. I am sure my kids still go to bed earlier than most (8:30pm??) because they'd certainly fall apart if we regularly kept them up after that. He can go without a break all day and stay up late and even eat late with no consequence.

We continue to be strict with food at home (GF, organic, whole foods) and with lunches, but when we are at parties, sleepovers, field trips, or at friends houses I let him partake and make his own choices. He is very compliant with his supplements so I honor his good care of himself with this. And his body can handle it which continues to amaze me. The only difference I insist upon is having a snack during a field trip - going from 8am to 1 or 1:30 with no food is just idiotic.

We determined finally through testing that another bacteria, Mycoplasma Fermentans is a causative factor to Leo's minor tics that wax and wane along with the Strep we've been addressing. This knowledge has made a big difference since we are able to target this bacteria through Rifing. I am sure Lyme is in there somewhere, but for now it as a manageable level. Perhaps we caught it early enough through Rifing. I continue to use blended homeopathy and nutrition support for detox and die-off from Rifing. A night and day difference from the winter where they got so bad.

Leo has also been a trouper when it comes to all the attention Sydney has required this past year. It hasn't been easy for him. He has an almost adult-like understanding of the big picture of chronic illness and has empathy for us and for Sydney. He could easily be the kid that you could ignore and he'd plug along doing the "right thing", his chores, his homework, etc. I appreciate his steady character and maturity in handling his irritable, emotional, and sensitive younger sister. So, I try to make an effort to spend special time with him, which doesn't always work out as the pill-pusher chief medical officer of Sydney. One day I'll make it up for him.

Globally Sydney is better but has a long way back to recovery. I can only hope that she can get there. Applying what I've learned from the Autism battlefield has helped exponentially that's for sure.

My DH is still out of work. We are hopeful that he will find employment back on the west coast away from endemic Lyme areas. I welcome bad air, bad water, and a higher cost of living with open arms. I say bring it! (Sure that may be dated slang but I just love it).

As for me, I am all about Lyme. Lyme Lyme Lyme. So many kids are not diagnosed and undertreated. Yet another category of illness that makes up the now typical fabric of the American classroom.

For "fun", a fellow Lyme mom and I took out the class directory and counted how many "regular" kids there were in 4th grade. Between the 2 of us, we knew every kid. I have a boy and she has a girl in this grade, so we really had it covered. There are about 108 kids - an average of 5 per class of 22 had no health or learning issue. I mean asthma, allergies, learning disability, ADD, ASD, OCD, diabetes, obesity, Lyme Disease, P.A.N.D.A.S. like disorder, Psychiatric disorder, Behavioral disorder, or some other IEP related issue.

Just 5. FIVE KIDS on average that had no problems. The next day I stared at this very group during the Spring Recital. There they all were, all lined up on stage singing. I started to tear up but not for the reasons most people would think. A picture of health? No, a scary, devastating picture of the future.

Living With Choices 9/10/09
This is my first post since our move. My family and I moved out of Lymeland across the country to the beautiful Pacific North West. No matter how you slice it, moving is hard even when things go as planned don't you think? My husband lost his job over the winter, so we decided it was a good time to look for jobs out of Lymeland. Fortunately, we were able to do it, and got out.

We are still adjusting to our radically different lifestyle - from living on 3 acres in the middle of the woods in a small town to a city apartment up 2 flights of stairs. I am having college flashbacks that's for sure! We hope to sell our house back east soon, and then we'll see where we stand. It gives me perspective to live like so many people do all of their lives with kids and dogs, in a much smaller living space. We really had it good living in a house where I could just open the door to let the dogs outside, the kids could come and go as they please. Now I abide by the poop schedule along with the school schedule.

As we drove away from our house for the last time it felt right. Not that I wasn't crying a bit, we all were, but it was grief just as grief is, nothing else like regret, uncertainty.

Although our lives are all harder for the time being, I am relieved that my kids are out of a Lyme endemic area. I had to face the music - my kids are SICK. My kids have weak immune systems, and will probably be this way for the rest of their lives. I have a hard time accepting this fact, something I work on each day.

A practical decision. Getting Sydney better is one thing, but then once she is "better", keeping her in the same place like a sitting duck was just too much for me. And for Leo too - he has shown positive results to some of the Lyme coinfections, but is basically asymptomatic at this point. He had the facial tics, but they are gone for the time being, and maintain him through Rifing, homeopathy, and an anti-Lyme herbal regiment. While I am ecstatic to get to the root of the tics, I have to keep up with the program to keep him healthy. A delicate balancing act - us moms all seem to have one.

Both kids continue to have naturally low Ig levels which is part of the issue with them keeping bacteria under control - strep, lyme, the coinfections like Mycoplasma, Babesia, and Bartonella. They are high with strep every time we test! The facial tics seem to be my barometer to illness for them. I'd prefer something else, but at least I finally know and the guessing game begins.

Some good news - Sydney had a major jump in improvement over the summer, counter to what I predicted happening with the toll and stress of moving. We continue to have her on 4 antibiotics along with homeopathy for support. We are SO RELIEVED.

As the ILADS doctors say (they are the DAN of Lyme docs), "There is no cure of these diseases. Antibiotics work to cut the population down to a point where the immune system can take over. This is where herbs and homeopathy come in for support." So that is what happened - we did a trial on herbs and that appears to take the credit for some of her chronic pain disappearing. For instance, her sore throat that she had for 10 months is now gone, courtesy of a modified Cowden protocol.

The kids are adjusting nicely to their new school. It is hard though, especially for Leo as a 5th grader. All these kids that have known each other forever. His new friend Kevin that he met over the summer hasn't played with him yet at recess. He is nice to him and says hi, but that's it for now. I know it hurts Leo, but he doesn't admit it. He keeps reaching out, playing with different kids in the "jock" group so far this week. For Sydney, it's so much easier as anyone with a girl knows. And she is younger, in 3rd grade.

I am hoping that what we'd done with Leo will not crumble putting him in a completely new setting on all levels. A temporary home, a new school, all new people. It was really the only truly hard thing to leave behind - knowing our old team was just minutes away if we needed them for an intervention or for tutoring . We had to weigh in on the cost/benefits - we now had to make a decision that had Sydney more in mind than Leo.

It's been heartbreaking seeing him miss his old BFF. They are very cute on the phone and on video chat. Validating on how deep of a friendship he can have. He was SO sad, and still is. I am sure it just takes time. I felt bad for his BFF too, his parents tell me he is having a hard time. A little displaced at recess, just walks around alone sometimes, not sure what to do. They were inseparable for 2 years. It's been great talking to Leo about friendships, and to teach him about long distance ones, and how you need to adjust for phone conversations. It's been a learning experience for us all. He wrote a lot of letters and emails, which seemed to inspire him and make him feel good.

Who knows where we'll end up or how the school year will end. My hope is that Leo will have a couple good friends to go to middle school with next year. I am anxiously awaiting his standardized testing scores from the spring - hopefully they'll be validating or be telling on what we need to work on. As his old clinical supervisor says "The testing is like a test for ASD. All it does is test for inferences." I know this isn't his strong suit, but hope he tests in the normal range like he did last year.

The husband is tolling away, his new job is great but overwhelming and beyond busy. It will be like this until next year. We also have one car, so public transportation is beginning to take a toll too.

For me, I am still doing the settling in errands and chores. On major medical duty - getting doctors set up, etc. I am a bit isolated in the apt, not in a neighborhood street yet making friends. But, I've met some really nice parents so far, just don't have that consistency yet. Time will tell.

September 30th, 2009 - Standardized Testing Scores from 4th Grade

The test scores came in the mail! They are not GREAT, but Leo is still in goal range for everything except math being advanced. Like last year he was behind his school's average. The good news is that he dramatically improved from last year! He learned something after all during his mediocre year.

It is so interesting as they track each year on a big spreadsheet eventually totaling 6 years of student performance. My huge fear is that he is going to drop out of "goal" eventually in writing because he is on the low end. Maybe in reading at one point too. Although I believe the standardized testing has huge flaws, it is basically my only barometer for how he is doing compared to the regular world. And my only glimpse into any future issues as we approach middle and high school. Well, another round of testing at Yale would do it, but who'd want to go through that again?

It is validating we chose the new school we did because they have the best reading/writing program in the area. I can already see how much harder he has to work in writing - making reading connections EVERY DAY in his reading log and answer questions. Just what the doctor ordered, going deeper. Why do characters behave the way they do? What are their intentions, motives, desires? Becoming the character....relating. Theory Of Mind, our old friend. This will never be a strong area, so I'm happy Leo likes his teacher and seems more content doing the work. Hopefully we can give him as much practice as possible in finding the things he needs to look for. Here are the scores:

Reading: Leo 263 /School Avg. 282 for the category.
Specific area that was below: Making reader/text connections: 3 out of a range of 6-8.

Writing: Leo 243/School Avg. 270 for the category.
Specific area below: Composing/Revising: 10 out of a range of 12-16.

Math: Leo 297/School Avg. 286.
Specific area that was below: Geometry; approximating measures: 3 out of a range of 4-6.

None of the weak areas are a surprise! It's great to know what we need to continue to work on at that there are no surprises (yet) anyway.