I was going through photos and found an old screenshot of a kindergarten checklist before L went to kindergarten. I remember when I read this and didn’t really think much about it. But I kept it to refer back to. Turns out, almost three years later, I am reading it again and thinking about Gavin.
Raising an eager learner is the goal, and it can be achieved easily through play and day to day activities. Here are the top readiness skills that kindergarten teachers look for:
Excitement toward learning – I can say that G is definitely excited to learn things and wants to.
Talking about thoughts and feelings – This is something that does not yet make sense to G.
Listening to others – In the past two years, this has improved greatly for G.
Desire to be independent – He definitely has this!
Playing well with others and taking turns – G works on this in therapy, and overall has a lot more patience now. But this item is something he needs a lot more practice with.
Following simple instructions – This is also so much better than a year ago!
Ability to hold and use a pencil or crayon – G was really, really good at writing letters and all numbers last summer and the year before that. He lost this ability in the past year and we have got to get it back.
Recognizing numbers and letters – This is 100% already accomplished.
If I read this checklist just one year ago, I would not have wrote the answers above. He has changed a lot and I am happy to say that having 5 of 8 items basically checked is wonderful. I am very confident if we can take care of the other items that he can be ready for kindergarten, with assistance, for fall of 2021.
For a couple of years, G does not sit at the breakfast nook. Something about the way the cushions move, or how high the benches are – he doesn’t want to sit here. Even though his legs are so long now, and so close to the floor at the edge of a cushion, he is really terrified of being here. When we try to sit him on the bench, his body becomes stiff as a board and he grabs us, fingers digging into us for dear life. Today we got him to sit with me to eat lunch there, finally. But now we have to do it everyday for lunch until he can sit without crying. By looking at these pictures below you wouldn’t think he was screaming about being there just moments before. After we were done eating he pointed to the floor to ask to leave and scooted right off. About an hour later I asked him to sit there again and he ran away. Our goal is to have him sitting here with us all the time, happy as a clam, climbing out, looking out the window, and feeling great. So here we go.
Here goes our 21 days of prescription Nystatin anti-fungal liquid. Still looking for the next one thing that might make a very noticeable change and unlock another door for G.
Day 1: 2/18/20: G started Nystatin 3 times a day
Through the next few days he started putting his his head upside down on the pillow in his crib. (Yeast die-off signs?) Still grinding teeth.
He started making loud short screams at times, unlike ever before. Kind of like quick yelps here and there. (Yeast die-off signs?)
As he falls asleep for a nap or at night, he will do this short scream a few times as well. It’s really loud.
Day 2: 2/19/20 —
Day 3: 2/20/20 —
Day 4: 2/21/20: G started touching the walls or the tables, as if he sees something like a pattern, and stares at it a while while kind of scratching the surface with his nails. He never does this. Still grinding teeth.
Day 5: 2/22/20 —
Day 6: 2/23/20: Took G on a long car trip with his older brother (1 hour 30 minutes each way) He did exceptionally well, was never mad or sad, and contently looked out the window.
He still did not want to walk when we got to our destination, because it was so windy, but he tolerated being in the stroller for a long time, as usual.
The trip home was wonderful and quiet most of the time. There was hardly any stimming or stereotypy. He also did not get upset and cry when I didn’t play the songs he usually wants in the car. Instead I just played a lot of relaxing music that he and his brother could both enjoy. I was overall just really surprised by the trip.
When we got home he ate and went for a nap. He was in the crib at around 4:20 and did a lot of the quick screams. Put his head upside down many times. Fell asleep at 5:45, grinding teeth, and woke him up at 6:30.
It really seems like he is having symptoms of yeast die off. So I started reading about how to make gluten free and yeast free bread again. The bread he always eats (Franz multi-seed gluten free bread) is made with yeast. Also want to finally get rid of the Goldfish. Finding a yeast free cheese cracker is difficult. I like that he eats something that is crunchy – if we take crackers away, everything he eats is very soft. I’m afraid he would reject new foods in the near future that are crunchy if he forgets what it’s like to chew that way.
Day 7: 2/24/20: G slept nine hours last night. He had a great, calm morning. When he woke up, he was putting his head upside down on the pillow. Then as usual when we go to therapy he tries to hide his eyes under his beanie or behind his hands, and walk with his eyes covered up, as if it’s too bright outside or he doesn’t want to look where he is going. He also leans on me, falls on me, like being drunk. It’s kind of like when he doesn’t really want to go somewhere, but is just being agreeable, he acts wobbly and puts his face into my leg or into my jacket and walks super slowly. When we finally got downstairs at therapy, he put his backpack on the hook and began to walk normally again and not hide his eyes anymore. At home in the afternoon he was being frustrated a few times about wanting Goldfish instead of puree. But when he went to the crib at 4, he was asleep for his nap by 4:30.
Day 8: 2/25/20: G is still doing that “drunk” kind of thing, hiding into my legs, not watching where he is going, and laying and climbing in different ways. But there’s something different about him again today besides this wobbly, explorative stuff. He is more focused and calm, less stereotypy until he watches videos. Napped today and did not want to wake up at all, as usual but he was even more of a little log. When he finally got up, I noticed his hands were really cold and almost damp.
Day 9: 2/26/20: Still grinding teeth. Limp noodle G is even more so. He walks like he is wet spaghetti. I finally figured out how to describe it – he is mostly doing it during transitions. If he has to go downstairs, upstairs, get ready to go to the car, or go to the bathtub, he becomes limp as he walks, it’s hard to get him to walk, and he wants to hide his entire face under his hat or my jacket. Afternoon update: Therapist who was with him for 2.5 hours during the afternoon said he was very wobbly and laying on her. The other therapists this week haven’t noticed it so today must have been pretty intense for that behavior. She said his focus time was short the later it got in the afternoon. When he got home he was very jumpy and shook his head fast a lot (like the saying no motion). He never shakes his head.. Later he took a nap but it was very short and he woke up crying, then he was screaming and wanted water. I emailed one of his doctors and they said to stop the Nystatin. I asked them if they think the yeast died off already? Still waiting for reply. If all these wobbly symptoms were temporary, I would want to complete the 21 day treatment and then stop. But if did keep acting like these for the next few days, and shaking his head, and throwing his head back into the pillows, I would start to wonder myself if I should stop. I can’t believe Nystatin is having such a big effect on his behavior. He is still so happy and loving, and never angry, just a few screams here and there, but this strange behavior must mean something.
Day 10: 2/27/20: First day without any doses of Nystatin: He was definitely less wobbly and still very calm. He had a lot of trouble hanging up his backpack and jacket at therapy. When I picked him up, his therapist said he was not wobbly or leaning on anything today. He had a great day and almost ate mashed potatoes. At home he was leaning into me and hiding again on the way to the front door. Put pau d’arco and q/b into his lunch. At naptime, he went into the crib around 4:10 and at 5:25 was still jumping and putting his head into the pillow with his bottom up in the air over and over, looks like he is squeezing his head into the pillow. Grinding teeth often but not all the time. The different part about today’s nap is that he is holding his head on the pillow for a minute at a time with his bottom in the air. He never does it for longer than a few seconds before switching up positions. Update: he did not fall asleep, took him out of the crib and it turned out that he had a #2. It’s a really fluffy kind, and he also did it before nap. So I guess he couldn’t hold it.
Day 11: 2/28/20 Today G was still acting very sleepy. Mimi fed him downstairs for breakfast and he was laying down on the couch and could barely eat. Went to therapy and he was hiding his eyes, not walking, and very spacey. Asked him to put his backpack on the hook and he was just looking off toward the walls and the windows. When I picked him up he was better. Lunch was quercetin/bromelain, pau d’arco, leucovorin and 1/4 tsp beef gelatin. At home we ate dinner at the table on a chair, and he stayed the whole time and did not get up. He asked to get up three times by pointing into the kitchen but did not get mad when I told him no. Bath time was really amazing and funny. He was putting the bathcloth on his tongue over and over, I think he feels the tickles. He is exploring his mouth more than ever. I think it’s a good sign he might talk. Many sounds and babbles tonight. Still grinding teeth. It looks like tomorrow he might be almost out of his spaceyness, because tonight was pretty close. He had pau d’arco, quercetin and bromelain at lunch. Have not heard back from doctor about when to try Nystatin again or what to do.
Day 12: 2/29/20: G was much better today and not acting very sleepy at all. More active, and back to normal but better than normal. No Nystatin, quercetin/bromelain or pau d’arco today at lunch. Still grinding teeth. Took two hours to take a nap today.
Day 13: 3/1/20: G slept very well. He had a calm and active morning. Went to the park and was able to get him to come out of the stroller and touch flowers and numbers. Very happy mood. Gave him one dose on Nystatin at lunch, quercetin/bromelain, leucovorin, 1/4 tsp beef gelatin, cromolyn, but no pau d’arco. Went for a nap at 3 and fell asleep 4:30. Naps are still taking so long but think he needs them.
Day 14: 3/2/20: G had a good sleep and a good day at therapy. He did try to grab the therapist’s face a few times when he was frustrated. At lunch he had quercetin/bromelain, leucovorin, 1/4 tsp beef gelatin, cromolyn, and pau d’arco. He did not take a nap today, he was too alert and awake. He was very happy to come out of the bed and was running around. Just very happy in general.
Day 15: 3/3/20: Gavin woke up at 5:30 AM and was not in a great mood. Today was not very great. Lunch was leuco, pau d’arco, q/b, cs in water before nap. He did take nap. Night was better. Tired today, short update.
Day 16: 3/4/20: G had a good morning, had to wake him up for breakfast He went without me into the clinic today. When he got home, I decided enough is enough with his teeth brushing. I sat him down and got the toothbrush and said “We’re gonna brush your teeth now.” I brushed them all over and he tolerated it. I felt bad that his gums started bleeding by his front teeth. He really needs it. Lunch was calcium/d, leuco, q/b, cs in water. He went for a nap at 4:30. Grinding teeth.
Day 17: 3/5/20: G had another good sleep and slept past wakeup time again and had to be woken up. He wa super happy and went into the clinic again without me. He gave me a great kiss goodbye and walked right in. They said he had a good day, high energy. It’s 4:50 now and he is trying to nap. (Fell asleep 5:30.) I have felt pretty tired lately and a little lost on what to do next. One of my oldest friends told me today that her son was diagnosed today with high functioning autism, Asperger’s. I just couldn’t believe it. I didn’t want to say “sorry” because there’s nothing to be sorry about. It’s just a struggle sometimes with any level of autism. I told her I am here to talk and that now that she knows it will be easier to figure out what’s next. Lunch was leuco, q/b, cs in water. Grinding teeth less. Took a preschool workbook into the bed with him. That was interesting. Switched it out for Owl and he didn’t cry about it.
Day 18: 3/6/20: G woke up at 6, had great day school, ate all of his food for the first time in a year, had to leave early because a therapist left, went to bed at 3 and fell asleep at 4. No supps in lunch except leuco. Less grinding of teeth.
Day 19: 3/7/20: Forgot to write today, just had a busy day.
Day 20: 3/8/20 Today G slept in a bit because of daylight savings, and he had a really wonderful day. Lunch was pau d’arco, leuco, and q/b. Before lunch he was outside playing wonderfully and running around, went down the slide about six times, and didn’t ever go to the backdoor, or get upset. I think something is really healing inside his gut!
Day 21: 3/9/20 Today would have been the last day of Nystatin. My guess is that G would have been in rough shape. It was really doing something inside of him once the work was complete I think. He had a good morning and slept until 8:30. Wow! He was very alert on the way to therapy, but started his “sleepy lean” when we were walking. I look forward to seeing how they think his day went.
This feels a little off topic, but a family has to be healthy to keep the kids healthy, right? Lately, meal prep has been what we do to make sure we do not over indulge during the day or night. Plus we are now eating a bigger variety of vegetables than ever. Now if only the kids can get into the groove, it will be awesome. But – one step at a time. Here are the latest meals. If you have any ideas for new meals, let me know!
Our first week of meal prep was in January and it was actually chicken fajitas with rice and black beans, but I don’t have a photo. The photo above is meal prep week two: there were two kinds of meals: chicken with edamame and rice, and cabbage rolls with spiraled carrots and rice. The cabbage rolls were made months before and were frozen. Usually when you make cabbage rolls there are always too many and you are cabbaged out – so freezing some and having them for meal prep later on was so easy to do. Not pictured are the black beans added to each bowl later on. They were still cooking!Week 3: sausage and peppers, with cauliflower fried rice (soy sauce, scrambled eggs, peas, carrots) and white beans. Sriracha on the fried “rice”Week 4: (I realized I wanted to do a blog post and started making horizontal photos!) Black pepper lemon chicken with green onions, jalapeños, onions, sweet peppers, snap peas, green beans, cauliflower, and rice. However, three of the bowls have curry tofu nuggets instead of chicken. (And those things are delicious.) These bowls are my favorite to date.
Over the years when I would see people post online about meal prep, it looked mostly complicated and time consuming. But thanks to finally getting organized, it’s a piece of cake to do all this cooking on one morning during the week! The feeling of knowing you are done with all of this is just awesome, so we can do other things besides cooking.
So how did I get organized? The first reason this is so easy is because of Imperfect Foods. We have used them ever since the company arrived in Portland. Mostly the vegetables and fruits I ordered were always for the kids, especially G because of his purees packed with nutrients for his picky diet. But later on, as Imperfect added new categories like dairy and canned goods, I get not only different vegetables delivered (like snap peas, jalapeños, sweet peppers, herbs, etc.) but I can add canned beans, cheeses, sauces, and new things to try like tofu nuggets or vegan meat replacements. We are basically on a new food journey all the time thanks to them. The best part (knock on tofu) is that ordering is so easy, and their deliveries have always been on time. I have nothing but positive things to say about Imperfect. Just awesome! Check out the latest order to see what I mean about the prices and variety:
Your order details for Wed, February 26th, 2020
ORGANIC BOX
Product
Quantity
Price
Organic Italian Parsley Bunch (1 ct)
1
$1.19
Organic Lemons (1 lb)
1
$2.03
Organic Potatoes (1 lb)
1
$0.79
Organic Green Beans (Organic Green Beans) (8 oz)
1
$2.49
Organic Mini Sweet Peppers (1 ct)
1
$4.25
Organic Carrots (1 lb)
1
$1.07
Bitchin’ Sauce – Original (8 oz)
1
$4.99
Nasoya Organic Tofu Vegetable Dumplings (9 oz)
1
$4.99
Conventional Zucchini (1 lb)
1
$1.99
Cento Black Beans (15.5 oz)
2
$1.98
Cento Cannellini Beans (15.5 oz)
2
$1.98
Cento Chickpeas (15.5 oz)
1
$1.49
Organic Rainbow Chard (1 ct)
1
$2.15
Subtotal
$31.39
Discount
$0.00
Delivery Charge
$4.99
Credits
$0.00
Grand Total
$36.38
The second reason that made this all so helpful is that I just make sure I always have the main staples on hand. There’s always jasmine rice stocked in our house and frozen cauliflower rice, spiraled carrots, edamame, etc. from Trader Joes. Also having frozen chicken or other frozen meat is key too. But I also buy fresh meat and marinate it right away, then I know I have to cook it in a few days and get the meal prep going again.
The best part? Daniel already lost about 15 pounds, and I’ve lost 10.
March 2 – Week 5 meals:
Two meals with beef, carrot spirals and rainbow chard with garlic and lemon juice. The other meals are spicy pork, with jalapeños, onions, peppers, fried cauliflower rice with scrambled egg, green beans, carrots, and rainbow chard are underneath the pork.Rainbow chard is so pretty when you’re cooking it. But then the colors fade away.
March – Week 6 Meals:
Greek yogurt marinated kabobs broiled in the oven – before pictureKabob meals – over a small amount of rice, with tiny potatoes tossed in garlic, dill and lemon juice. Favorite meals to date.Spicy chicken, onions, collard greens, garlic, corn, peppers and green beans, on top of cauliflower (grainless meals)Buffer meals, chicken gouda sausage with onions and brussel sprouts with black beans (grainless)
A year ago today, I was pretty down. This is the post I wrote where I mentioned how G was scratching us, sleeping poorly, among other things.
While no big miracles happened with his stem cell injection, or any of his supplements (or the break we had from them all), I am happy that we have still tried a lot of new things in the past year. I am feeling more comfortable – and less down.
We still have a ton of supplements and medicines in our cereal cabinet. From cromolyn sodium, to TRS spray and our newest addition of nystatin, we are getting somewhere, and G is happier and better than ever at this very moment. I kept asking myself, is it really true? The answer is yes.
When I dropped him off at therapy today, he was strongly seeking my approval when he put his jacket on the coat hooks. I am focused on basic life skills lately, just so he can take care of himself, and he usually gets upset when he can’t get his hood on the hook. Today when he finally got that coat on the hook, he got super close to my face, stared deep into my eyes and waited for me to say good job. He smiled and ran off happily to look for a toy. It was a big defining moment of how he really is changing. And for that today, I am happy.
Plus spring is coming. He needs sun on his face and long walks again. We all do.
January turned out to be a difficult month. I wouldn’t say it was bad, or hard – just difficult. G started wearing the foot orthotics in the first week of January. He eased into it but then started wearing them all day while at therapy. I really didn’t think they bothered him. He would even point at the orthotics when at home and want to put them on. All the signs of him liking them were there. But it really seems like they were bothering him and blocking his sensory input. He just needs to get up on his toes. It’s an outlet for him. He couldn’t and he was getting angry. He was hitting and trying to scratch us. He was poking his therapists, trying to hit them, trying to hit other peers, and getting so upset about many little things. He could barely even eat dinner some nights. None of us knew what was wrong. We were starting to get really stressed and really down. I decided to have him just stop wearing the orthotics as a first step. In the first day of him not wearing them to therapy, he became happier. Within the next few days, he was almost back to normal. And now almost two weeks later, he is so much better. He’s so much better that the past weeks are a blur now. The fact we had to have a behavior meeting at therapy is a blur. I am so relieved.
This whole thing made me rethink his supplements. He was not taking anything extra in his food, pretty much, for almost a year. I took a break from dissecting all of that information and from dealing with all of us hiding things in his food. But now I am back on track and have the new regimen. It seems to be making him even more calm, focused and happy. Will keep building on this and see where it takes us.
Morning: (1/2 tsp) Leucovorin in yogurt
Afternoon: (1/2 tsp) Leucovorin, (1) pau d’arco, (2) quercetin and bromelain in puree
Water with fractionally distilled aloe vera and cromolyn sodium before nap
Dinner: (1) zinc picolinate, (1) calcium in yogurt
Why leucovorin?
Biochemically in the body, folic acid supports cellular perception and response, methylation processes and many enzymatic reactions. It is also linked to maintaining healthy homocysteine levels, which supports cardiovascular health.
To be active in the body, folic acid has to be reduced twice by folate reductase enzymes, then converted to tetrahydrofolate, after which a methyl group is added to the tetrahydrofolate. In some individuals, the use of natural folinic acid may be more beneficial than folic acid, because folinic acid already has attached four hydrogen and one methyl group, thereby shortcutting the complicated biochemical process.
Why pau d’arco?
Pau D’Arco is a tropical tree that has been used by natives in the Amazon as a folk remedy for hundreds of years. Pau D’Arco is an immune stimulant and helps keep the gastro-intestinal system healthy, making it less hospitable to yeast, parasitic, bacterial, fungal and viral infections. Studies have shown Pau D’Arco to be anti-inflammatory and anti-oxidant, as well.
Why quercetin and bromelain?
Quercetin helps ensure appropriate immune response, inhibits formation of free radicals and promotes circulatory health in part by supporting the integrity of small blood vessels.
Bromelain complements quercetin for appropriate immune response and cardiovascular health, while also promoting joint comfort. (Bromelain may enhance the transport of the bioflavonoids (like quercetin) across the intestinal membrane.)
Quercetin Bromelain supplies the flavonoid quercetin extracted from seed pods of the Dimorphandra mollis plant. Flavonoids are potent protective nutrients found in many plants and foods. Bromelain is an enzyme derived from pineapple.
In autism with possibility of inflammation or histamine problems, Quercetin functions on an antioxidant level to reduce damage and irritation caused by free radicals while suppressing histamine response – the body’s reaction to allergens. Bromelain functions on an enzymatic and protein level by limiting the action of metabolites and neutrophils on inflammation.
Why zinc picolinate?
From this article: International studies have found that normally there are high levels of zinc in the brain, and brain cells are regulated by zinc, but that zinc deficiency is prevalent in autistic children.
“Research using animal models has shown that when a mother is given a low zinc diet, the offspring will be more likely to display autistic associated behaviours,” she says.
“Our work is showing that even the cells that carry genetic changes associated with autism can respond to zinc.
“Our research has focussed on the protein Shank3, which is localized at synapses in the brain and is associated with neuro-developmental disorders such as autism and schizophrenia,” she says.
“Human patients with genetic changes in Shank3 show profound communication and behavioural deficits. In this study, we show that Shank3 is a key component of a zinc-sensitive signalling system that regulates how brain cells communicate.”
Why cromolyn sodium?
Cromolyn sodium works by preventing the release of substances in the body that cause inflammation. Cromolyn sodium originally derived from a healing herb called ammi visnaga. Among its other uses, ammi visnaga traditionally controlled kidney stone pain. Its ability to open the airways intrigued early researchers. They eventually identified the plant’s active ingredient: cromolyn sodium. Cromolyn sodium is known to prevent mast cells from triggering the immune response.
Why fractionally distilled aloe vera?
Aloe vera contains nearly 200 biologically active components, including polysaccharides, vitamins, enzymes and minerals. It helps balance the stomach’s pH levels and promotes healthy bacteria growth.
Why calcium?
Just because we need to get that back on track as well as Vitamin D, soon after.
As for the orthotics, he is already on a program at therapy where he is told to do “flat feet” so we will continue with the verbal prompts and see how much better he gets with it. But really for right now it’s not a big concern anymore. If he needs to do that sometimes, then he just needs to until we can find another way for him to get sensory input.
March goals? Test G to see if he has folate receptor autoantibodies. If he tests positive for those, it means that he definitely is benefiting from taking leucovorin (folinic acid) and should continue. Some studies show that as much as 60%+ of people with autism have these autoantibodies.
Tomorrow is your birthday. You are a positively sweet, snuggly, smart and stubborn guy. There is no one like you on this earth. I look back at the last five years with so many different feelings. My biggest feeling is that I am proud of how hard you work to learn and to manage your feelings every single day.
“He’s still only two and a half,” I would say at those first doctor’s appointments with G. I wanted to help him right away and thought it would happen fast. It felt like we were so early and we had so much time. He stopped eating a variety of foods and would push them away. He was not talking or even pointing at things.
“He’s still three,” I said at the next appointments. He did not sleep well and woke up multiple times a night. He would cry, I would cry. He had breakdowns over small things and the worst part was that he could still not talk or communicate to tell us what he wanted or what was wrong. We took him to an occupational clinic and he was afraid to walk on their floor because it was a different color in every room. He cried and screamed. We worked through it and he overcame his fears. But then he didn’t want to get on the swing or climb on most of the equipment. He was upset still more than he was happy. We decided to look into ABA and focus on his diet and supplements to help him get better. Really we were grasping at dials in the dark. In the big picture he could do many things so well for a three year old, he could write numbers from 1-10 and was an iPad wizard. But through all of his learning, he was always battling his overwhelming feelings and sensory overload. That was all in the way of G being able to be completely and simply G. My research on autism, its causes and treatments, was daily and nightly.
“He’s still only four,” were my words at more handfuls of appointments. But now things were solidifying: we found the right ABA clinic, had so many more doctor’s appointments and did so much more research. He was better and more calm. He was learning ways to play instead of gravitating towards toys with numbers and books with numbers. He started using Proloquo on the iPad and very well. We could communicate and he could do more than grab our arm and pull us somewhere. We could ask him questions, and he could choose what he wanted. He got better with routines, bedtime improved, everything improved. He started sleeping through the night finally. He was no longer interested in some things he used to be good at, like writing numbers, but it wasn’t a priority at the ABA clinic or at home. With G, you really have to get into routines and repetition to keep him going or he might lose the skill, but that is like any kid really so I try not to worry about how that goes.
“He’s still only five,” will be the words I say at his first appointment of 2020, next week at an immunologist clinic here in Portland. I am interested in going down the road of investigating the possibilities of autoimmune encephalitis and allergies causing inflammation in his brain. We have had so much progress, and when you write it all down, it can be seen by anyone. But it’s hard to see it at times when you see him developing new OCD tendencies. He has now been at the same ABA clinic for one entire year and it’s all amazing progress. G drinks from a cup now and we have retired his Camelbak bottles with the straws he would chew through over and over. He is able to stop using an iPad or stop watching TV by us just saying “let’s take a break” and he walks away without any breakdowns.
We got him SMOs (Supra-Malleolar Orthosis inserts for his shoes) last month to help him to stop walking on his toes and make sure he doesn’t have a short heel cord. He actually doesn’t mind wearing them and it seems like it will go very well. So we are excited about that too – plus when he wears them it seems he focuses more on where he is going and what he is doing. Maybe he is thinking less about what his toes are telling him.
There are still so many more things we can try to help G. There are so many people helping kids and adults with autism all over the world. I see countless statements like this on websites:
The Council’s vision is to enhance the lives of individuals with ASD across their lifespans.
What would help individuals across their lifespans the most? To ease or remove their symptoms. This has been going on far too long to not be able to go to one doctor as soon as you know something is going on and get help right away, instead of struggling through hoop after hoop for years without any real direction. I am really happy when I see a news article about another airport opening a sensory waiting room, or sensory emergency rooms at hospitals, and special bathrooms, etc. but what I really want is to cure these individuals who cannot speak and who are caught in such nets of sensory overload. All of these rooms and special places are reactive. I want preventive.
During all of these happenings, and all of the moms and dads researching every day about their kids, posting in Facebook groups, and sometimes silently suffering through another day of worries and hopes, life is going on. And G is working hard each day. He goes through his therapy days and still comes out of that building with a smile on his face.
G’s next five years will surely be miraculous, no matter what. Happy Birthday, little nugget.
I signed up my oldest son for a clinical trial for his myopia in June of 2019. I have learned a lot since then about myopia, a sulfate called atropine that is derived from the belladonna plant, and the history of it all.
What’s myopia? It’s nearsightedness: one of the most common eyesight problems. For centuries. For the entire history of the planet. And it’s only becoming more and more common. People with this condition can’t focus their eyesight on far away objects, making them appear blurry. Nearsightedness affects about 40 percent of all people in the United States, according to the National Eye Institute. By 2050, it will be 50 percent of the entire population of the world. If you don’t stop it while you are kid, you can never reverse it!
Thanks to clinical trials in Asia that proved atropine works in arresting myopia, there are companies that have started trials in the US and the UK to gather more data. My son is enrolled in Phase III of the Champ Study – the last phase which will end in three years and hopefully result in the FDA approving the use of either 0.01 or 0.02 atropine drops in the USA for myopia.
But boy, this has been a long time coming. And so many people have suffered unnecessarily.
One of the earliest statements (that I can find) from a US trial on investigating atropine drops for myopia was in 1978. NINETEEN SEVENTY EIGHT. When people looked like this:
Okay so in Portland people still look like the 70s Microsoft team but you get my point.
The trial from 1978 stated this:
After all this time, through these tiny shards of proof that surfaced in the USA, and in other countries that very factually proved through tons of time and data fluffed with more facts, that atropine given once daily STOPS NEARSIGHTEDNESS in growing eyeballs of children, you still can’t get it prescribed easily to a kid in the USA before THEIR EYEBALL STOPS GROWING. And really it still keeps growing even past age 20, and might not truly stabilize until age 30. So imagine, if you know your child cannot see well by the age of two or three, you could have such a huge leg up on stopping their eyes from getting worse and making their quality of life SO MUCH better.
So Liam is now in this CHAMP trial that seems to be the final frontier for atropine, that might allow kids to be prescribed it sometime past the year of 2022. There are 483 kids enrolled in the trial at 26 locations around the world: 1) Barcelona, Spain 2) Berkeley, CA 3) Boston, MA 4) Budapest, Hungary 5) Coleraine, Ireland 6) Columbus, OH 7) Danbury, CT 8) Dublin, Ireland 9) Elkins Park, PA 10) Forest Grove, OR 11) Fullerton, CA 12) Kirkland, WA 13) Lancaster, PA 14) London, Great Britain 15) Madison, WI, 16) Maitland, FL 17) Memphis, TN 18) New York, NY 19) Peoria, IL 20) Raleigh, NC 21) Rotterdam, Netherlands 22) Saint Louis, MO 23) San Antonio, TX, 24) San Diego, CA 25) Spokane, WA and 26) Tucson, AZ.
The CHAMP trial builds upon prior ground-breaking studies conducted in Asia, which demonstrated the safety and efficacy of low doses of atropine and concluded that low-dose atropine slows the progression of myopia in children. The CHAMP study is a 576-subject, randomized, placebo-controlled, double-masked study evaluating the effects on myopia progression in children, with multiple study sites located in the United States and Europe. The study duration is 3 years, with an additional re-randomization for a 4th year of follow-up. Regulatory filing can take place after the 3-year endpoint has been reached. Management of Nevakar has held extensive discussions with both the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA) on the protocol and study design and believes there is a clear path forward to regulatory submission in both the United States and in Europe. The CHAMP study represents the largest sponsored randomized controlled trial, to date, in myopia.
So it’s a pretty big investigation on atropine and we are part of it for 3 entire years. These three years hope to bring all of our children a halt to their eyes getting blurrier, blurrier and blurrier. And when they are older a heap of other things can happen with their vision because they have such bad cases of myopia.
But the question is, if this is known to work already anyway, why can’t some of us who have children with already very advanced myopia like mine, just get some atropine drops already? Of course I want to help and do this study, but so far his eyes are still getting worse during the study because we might have the placebo drops.
I haven’t wrote here since June. That feels like a lifetime ago now. My mom died in July. Then the other months just tick tocked along the line. My oldest son and I just got back from a long visit with my dad. My eyes are still puffy and vision is blurry as I look at this screen. I think it’s a combination of travel and allergies. It was such a good and busy trip, especially for my son and for my dad. They both really needed it. I did too of course but sometimes I feel like a puppeteer adjusting everyone’s happiness. (That’s one definition of a parent.) I’m still getting back to normal even though I slept really well. I had a lot on my mind this morning that I needed to figure out. Most of it is about Gavin. He will be five in January and I am simply scared. I want him to talk. I want him to love and be loved. I want him to experience life as we know how to experience it. With autism I know that’s a hard order to fill. And “normal” life for everyone else It’s not always roses but I want him to travel, read, experiment, and be himself. I’d be happy if he became a surfer, or a fisherman, or a nurse, or a food truck cook, or a domino player. It could be the most random damn thing I’ve ever heard of. But I just want him to be happy.
As I watched my oldest son blossom in maturity during our trip to see his grandpa, I had a tug in my heart for my youngest son to have those moments too. We haven’t even been on a trip together yet. Are trips necessary at this young age? No. But I would like to. I think he would too. And I know there is a way to get him more connected in our world. But how?
For the past five years, we have logged many hours into doctors offices, labs to draw blood, different therapy offices, and the most hours have just been in the car going back and forth. All the while, I tried to give all I could to our oldest son for treasured memories and to capture the innocence of his childhood. Even though my husband and I were always hurting to not see our sons experience all of this as a pair, a team – as “normal” brothers. As Christmas approaches right now, I really don’t have so many precious things on my mind. It’s because I feel like I am losing time. Most of my thoughts revolve around everything logical, real and solid. Doesn’t sound very romantic or whimsical does it? My oldest son is now seven but is already far wiser than his years. And my youngest, although still hanging on to the number four, is much the same although there have been big changes in the past year. They are close in age but they are becoming farther apart in their connection to each other as my oldest soars on in his own development.
As I juggle these feelings of holidays and the special moments I crave, this year I feel more like a warrior on a mission. I haven’t sat down and planned out the Christmas list for everyone or surprises I have in mind. I haven’t really started buying or making anything to make magic happen. (Okay, I did buy some felt gnomes to hold silverware on the table, but that’s it.) One thing I have done is order two new DNA tests for my husband and I. We’ve done one in the past but I am ready for fresh and new information. Plus I need the info on my BRCA genes so I can start getting tested early for risk of breast cancer, since my mom passed away this year from it. If you don’t take your health into your hands, no one else will. Time is the most precious and magic thing on my mind this holiday. There are only so many of these holidays left to celebrate with your *young* children. There are only so many wild summers left and quiet autumns. The faster I can get Gavin more on track with his communication and awareness, the faster my husband and I can feel like both our boys are together and connected to us in a deeper way. I want that so much.
So step one for this round of trying to accomplish this is controlling the health of myself and my husband. Our kids need us to be around in order to help them thrive. I can’t wait for those tests to come in because they are the peak of getting started again and knowing our baselines.
tests
schedule check ups, bring our test info
diet, exercise and supplement changes
The next step is Liam. He needs to go to vision therapy in the new year, and we need to practice math, etc. The et cetera is to enjoy being a kid. Easy enough.
For Gavin: two main things. I want him to see an immunologist, or several of them. And I want to try autologous stem cell transplantation. So far he is seeing Immunologist #1 on January 13th. She seems to be really good and if she can’t answer all of our questions, I hope she can send us to another person who will. As we dig deeper during the year of 5, I need more real answers and less hope to’s in my book.
I read this quote recently, and I think now at 35 I am finally able to live this way:
Real growth is when you start checking and correcting yourself. Instead of blaming others, you take your power back by being responsible for yourself.
It doesn’t matter anymore how exactly Gavin got autism, or how exactly my mom got breast cancer, or how exactly my husband’s vision doesn’t allow him to live a normal life much of the time. These are all things I have researched to no end, and I hope to help others once I figure out the why’s. But right now all I can use my energy for is for fixing what I can and preventing anything worse.
People are worried about babies under 1 eating honey – I mean, they yell NO, NO, NO HONEY!
But having multiple vaccines every month or two when you’ve barely been out of the womb seems like a piece of cake compared to eating a sticky gel made by insects?
I have a lot in mind for what I want to write, but need more time to figure out how to put it more delicately and carefully. For now this is just a placeholder.
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Tomorrow is your birthday. You are a positively sweet, snuggly, smart and stubborn guy. There is no one like you on this earth. I look back at the last five years with so many different feelings. My biggest feeling is that I am proud of how hard you work to learn and to manage your feelings every single day. 
