Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Thursday, July 29, 2010

Critters

Because these critters figure in the story yet to come, I'm going to interrupt the time-line of this to talk about animals, which have been a significant part of Butterfly's life.

Pets

Butterfly always wanted a pet, but there were a couple of issues. One was her sometimes out-of-control temper. If that was scary for us, as it sometimes was, I had to assume a small creature would not take to it. Another was the cost of pets. We were on a budget and the expense that comes with pet ownership really didn't work. She wanted a dog, but that wasn't happening. Butterfly bugged and bugged for a pet though, so I agreed to a fish.

Of course, that can be costly too if you do the whole aquarium thing, but we started off small with one Beta fish, which can live quite comfortably in a bowl, as long as you feed it and keep the water fresh. Butterfly named her fish, Kosta. It was a pretty little thing, and it lasted a couple of months. Then one day, Butterfly came out of her room and told me that Kosta was just floating in his container. I sort of recommend a fish as a starting place for any kid interested in a pet. Yes, it's inevitable that the fish will die. But it's an easy introduction to the concept of responsibility for a kid, because the fish does have to be taken care of. It's also an easier first experience with the concept of death. I mean, easier than a relative or friend. The only problem was, after the demise of her fish, it really wasn't long before Butterfly was bugging again for a pet.

When talk of a dog started up again, I suggested a cat. They are so much easier to care for and I knew full well who'd wind up looking after a dog. A niece's cat had just had a litter and she was looking for homes for the kittens. Bud's uncle brought one from her cousin's place. Butterfly had already decided to name the kitten Tigger. It turned out to be a wee calico, and Tigger it was. She was a skinny, skittish thing. I played with her at night before bed so she wouldn't climb the curtains. And a few times I rescued her when Butterfly went to sleep with an arm around her and she couldn't move.

Tigger

Butterfly was quite taken with Tigger, but somehow the little thing didn't return the admiration. In fact, Tigger grew increasingly frightened of Bud. Poor cat couldn't handle Bud's rough affection or the shrieking that was part of her reactions. Tigger was good at hiding in one of a variety of hidey holes in the house. So a couple of summers later, Butterfly was still thinking pet ~ one that she could love, her way. She wanted a grey kitten she'd seen in the local pet store. Now, this store was giving the kittens away, but what with shots and veterinary expenses, there's no such thing as a free pet. We had been planning to send Butterfly to a science day camp for a week or so, and that was going to cost around $300. I figured a kitten would actually cost about the same. Hubby and I decided it was time for Butterfly to learn to make a decision, so we gave her the choice: camp, or kitten? I was actually a little surprised that she picked the kitten. But, enter cat #2, Pepper.
Pepper

Of course, Tigger did not take to the intruder, but Pepper gradually won her over by teasing her. Pepper was a character though. She obviously had not been that well cared for as a kitten, because she pounced on anything that fell from the table, including a piece of lettuce. And she could make a "nest" out of a plastic grocery bag, so she was surrounded on all sides by a layer of bag. After she got acceptance from Tigger, she would be grooming her, and when Tigger was quite comfortable with the attention, Pep would suddenly haul off and bite her tail. Then they'd be off in a flurry of fur. One moment they'd be sharing a basket, the next they'd be rolling around in a snarling protest of fur and claws. Quite a pair. But Pepper didn't mind being handled by Butterfly, so she finally had a pet tough enough for her.

Horses

Butterfly loved horses. Many of her favourite books and stories were about horses, she had pictures of horses in her room, and she kept asking to learn how to ride. For a long time, this was something we really couldn't afford. But when Bud got into her teens, I took her to a local stable and went in to talk with the owner. She was a very nice woman and a former school teacher I'll call Marj. After chatting with Marj for awhile, I got comfortable enough to mention Butterfly's challenges, as well as some of her disappointments. I told her that I'd like Bud to try some riding lessons. Marj said that she'd teach Butterfly herself and we arranged for a first lesson, agreeing to just see how it was going to go.

Well the first couple of lessons went well enough. Bud was a little afraid, being high up on a huge animal, but she was obviously determined to ride. Unfortunately Marj had some things come up, so she asked her neighbour to take a lesson with Butterfly. The morning of the lesson, Bud was up and we were getting ready to go when the phone rang. It was this woman, and basically, she gave me Hell. We weren't late or anything, and we had never missed a lesson, but there she was on the phone demanding to know if we were going to show up, because she didn't want to be standing around in a cold stable waiting for us. I told her to just forget it. A couple of days later I called Marj who immediately asked why we missed the lesson. I told her the last thing Butterfly needed was to be given a riding lesson by an angry, resentful woman we'd never even met. Marj was apologetic. Apparently she knew this woman could be moody. I told her she just wouldn't do.

But Marj's mom was ill so Marj wouldn't be able to follow through on Bud's lessons. She told me she had asked a girl closer to Bud's age to be Bud's riding coach. The girl had a few years experience and Marj thought it would be a good match. Indeed, it worked out fine at first, until the girl wanted Bud to get past a canter and gallop on the horse. But Butterfly wasn't ready yet. That's when something changed in the girl's attitude. She started showing off by being rough on some of the horses. I watched a little aghast as this girl whacked one particularly lovely, even-tempered horse around. She insisted it would not hurt the horse, but this same horse, that was a favourite of Bud's and had been a gentle mount, was suddenly deemed unfit for new students a while later, because it had become rebellious. Then, even though there were rags for cleaning the bridles, this girl made Butterfly use the front of her shirt. I was waiting for Bud in the parkng area, and she came out of the stable very upset. We had planned to go out after her lesson, but had to return home so Bud could change. I was not impresssed.

Marj wasn't around, so I decided to go through with a birthday trail ride I'd arranged for Butterfly. I asked a bunch of the other girls at the stable to go along too. I was sure I'd made it plain that it was a birthday treat ~ for fun. But this young coach turned it into a lesson, not only charging me a lesson fee on top of the trail ride fee, but threatening Butterfly all through the ride that she wouldn't get any more trail rides if she didn't keep her heels down. A couple of the other girls confirmed this. So, Bud's riding coach had turned out to be a bully. Great.

Enough was enough, but surprisingly, she's the one who dropped Butterfly, calling one evening to say she didn't want to coach Bud anymore. I don't know... maybe she thought nothing would be said if she got rid of us. But I finally got hold of Marj and told her the girl had dropped Butterfly. She was shocked. It was simply not the girl's place to drop one of the stable's customers. Then I told her what had been going on. Marj was again apologetic, but I told her we wouldn't be back. I remained friendly with Marj, taking her some of my jellies in exchange for some of her rhubarb a few times, but Bud's love of horses had turned into a painful and disappointing experience and it was time to step back for a bit.

Butterfly could be crazy in reaction at home, but with others, she bottled up her feelings because she had a difficult time knowing how to respond to a situation. I don't know what it is with some people, that faced with someone who's docile and unsure of themselves, they just get mean. It was something that happened to Butterfly a few times. People would eventually notice she was different and didn't say much, no matter what they said or did, so they'd start being cruel. While Butterfly still expresses her admiration for horses from time to time, she just doesn't want to deal with people in order to get near one again.

The Dog

Yes, I finally gave in. Butterfly just kept on bugging for a dog. When she started talking about a golden retriever, I had a mental image of everything on the coffee table flying across the room with one swish of its tail. A big dog in our little cottage? No way. But when Hubby started talking about a husky, I knew I had to do something. So I took Butterfly to see some cockapoo pups. There was a little ball of white fluff that seemed about right, so I had Bud pick him up and hold him all the way home. He peed on her. She named him Sugar Cookie. They had bonded.

The cats were not happy, but they eventually got used to him being around, and learned that picking on him would not be tolerated. That little dog is devoted to Butterfly, but typical of any teen I guess, she actually doesn't pay that much attention to him. Oh, she loves him, cuddles him and takes him out at night, and he sleeps on the foot of her bed, but just as I suspected, most of his care comes from Hubby and me. Oh well, he is cute.


Wednesday, July 28, 2010

The Market, A Birthday Celebration, and A Journey

After the last experience, I certainly wasn't going to take another job anytime soon. But there was a community market in town early Saturday mornings during the summer that I thought might be fun and educational for both Butterfly and me, even if we didn't make much. It's a good thing we went into it with that attitude, because it wasn't exactly lucrative. But it was good experience for Butterfly to help me sell my homemade jams, jellies and baking, so I approached it as sort of a homeschooling summer co-op. When I decided to do this, I hadn't realized that this market was slowly dying. That first year we went, there were only four other shelters besides ours in the mall parking lot. Sort of a sad little market. We stuck it out anyway. What little we did make went toward visits to the local historical and nature sites and other outings that summer.

I have a difficult time explaining "value added" sometimes, but to me, the value in the experience of doing the market wasn't about money. It had a lot more to do with Butterfly learning to tough it out when she had to get up early Saturday mornings, even if she hadn't slept well. There was value in her participating in getting organized and packing for market. Our attractive display contributed to getting people over to our little set-up to see what was up. A combination of the meat and bread guy's sausages hanging up over his table and our rustic boxes with their neat display of preserves aroused curiousity. Butterfly loved to help create that display, and she learned that talking to people isn't so tough if you have something to talk about. When she stuck to telling people about the preserves and baked goods, she could be quite personable. That too was valuable experience.

That summer we also organized an 85th birthday celebration for my mom. I had been toying with the idea of giving her gathering for a few years, and it seemed like time. We re-mortgaged the house a bit early to get the funds necessary to put on a party for her, and I invited all kinds of people, including some relatives she hadn't seen in a long time. Despite some interfering elements and rather poor weather, it went off very well. Mom felt very much loved and appreciated, which was the idea. And Butterfly? Well, she and a couple of cousins helped out by keeping the parking traffic organized. I even bought them bright, lime green t-shirts and ironed on transfers that said, "parking staff." It was a blast.

Butterfly and her Nanna at that 85th birthday party.

The second summer we did the market, the meat guy quit, so it was an even sorrier few shelters in that parking lot calling ourselves a market. Clearly the market was on its last legs, but we showed up most Saturdays anyway, figuring it was the last summer we'd be doing this. The big thing that year though, was a wilderness adventure for Butterfly. We had applied to an organization called *Outward Bound, for Butterfly to go on their wilderness trek for 14 year old girls. We couldn't afford to send her, but there were bursaries available, and she qualified. So we spent a lot of time getting her ready for this. There was a list of supplies that she had to take, including a certain kind of pants, shoes, shirts, socks, and even long johns, and we had to find the best buys we could while still getting the type of clothing required. Tents and sleeping bags were supplied, which was a help. I emailed back and forth with the counselors there about Bud's dietary restrictions and they assured us they could handle it. Butterfly would be journeying with a gaggle of other 14 year old girls in the northern wilderness. It was kind of exciting for all of us.

We drove her up to the base camp to drop her off. Just Hubby and I made that trip with her, stopping in the little dry goods store in the nearby village to get her the nose plugs she forgot. We took Mom along to pick Bud up 17 days later. It became clear there wouldn't be any more trips with Mom. She had a heart condition and the drive seemed a little bit much for her. There was a feast at the end of Bud's "course" that we all attended, giving Mom a chance to rest up for the drive home. And Butterfly? The experience had been quite a change for her. Swimming, canoeing, portaging, making camp along the way, and even camping over one night alone, she came away from the whole experience more confident, as well as pleased with her accomplishments. I wouldn't hesitate to recommend this for other kids like Bud, but I would caution that it wasn't a course for kids with special needs, and not all of the girls were there willingly. Some of the girls from the city were there because their parents made them go, to build character I guess. Perhaps it worked, I don't know. I do know that it gave Butterfly the opportunity to experience people her own age who were very different from her. Even though it made her feel more isolated in some ways, I think it also helped her focus better on what kind of person she wanted to be.

There were reactions and blow-ups during these times, of course. But Butterfly was learning to cope with these a little better. She learned not to react so quickly and angrily to teasing, or when things didn't go as she had planned. Oh, she still had her moments, but there was notable progress. Really, I think just as challenging for her at this time, was puberty. That's not a bag of laughs for any teen, but for an Aspie, it's a particularly confusing time. Butterfly's learning took place during the summer that year. I didn't give her any new school work during the winter, focussing instead on life skills. We spent that winter cooking, reading, watching videos (some biographies in there) and talking about life. In hindsight, I'm so glad I did this, because the events of life were about to get even more challenging for us all.


*Info on Outward Bound is on Resource page.

Tuesday, July 27, 2010

Leaky What?

One thing Bud could always have at social events, was cheese, so if there was a platter of cheese and fruit, she was home-free. After she started having wheat again, she could also have a roll and perhaps some crackers, if she could check the ingredients.

(This is another bone of ongoing contention at social events and in stores. When we ask to see the ingredients, we really need to see the ingredients. It's important. We aren't asking just to be a pain. But so often, people would just shrug and say, "I don't think it has corn syrup," and nine times out of ten, they'd be wrong. So many things from boullion, soups and sauces, to marshmallows, desserts and fake whipped cream, to most deli meats contain corn syrup. And many things from crackers and soup, packaged rice or noodles, to spices contain MSG. It isn't good enough to guess and just blow people off. You have to READ the ingredients, or better yet, let the person asking read them. Sure, sometimes this is difficult, but usually not, if you're inclined to be helpful.)

When people didn't want to be inconvenienced and check that list, she just had to do without. When Butterfly got a bit bigger and her tastes expanded, she could also have deviled eggs, as well as pasta and potato salads, especially if it was a "pot luck" style affair and I brought them. All and all, she got to where she was able to make a plate of food off the buffet without worrying about a reaction. The only problem with it was that the carbohydrate content tended to be predominant. But it's not as if these events happened that often. And now and then someone roasted a turkey, or made homemade moose meatballs, or something like that, which Bud was able to add to her plate as well.

Dark circles under her eyes?

But it so often seemed that every bit of good news was always accompanied by yet another challenge. Butterfly gradually became very lethargic. She was becoming a couch potato and she started complaining at regular intervals that she wasn't feeling well, although she wasn't able to be specific about what was wrong. There were dark circles under her eyes, and those eyes had slowly changed from bright blue/grey to a just a dull grey. All she wanted to do was sleep. She was putting on weight from the lack of activity, as well as her pubescent age. All and all, this was so very unlike the hyperactive kid we knew and loved. Clearly this wasn't just a stage. Something was wrong.

At this time, I was participating on an internet forum for homeschoolers. Many of the other parents on there had kids with similar challenges as Butterfly, so it was a fantastic source of encouragement, as well as an information exchange. One of the other moms sent me an article about a health problem called, Leaky Gut Syndrome. When I read it, it sounded exactly like Butterfly. *Leaky Gut is the inability of the digestive tract to absorb certain proteins and minerals, such as calcium. (Which also contributes to weight gain.) It appeared that Butterfly had developed an inability to digest bovine dairy products. Now, Bud loved cheese in particular. She had so many intolerances growing up, I don't know what I would have done without it. But it certainly seemed at this point, that it was giving her some very profound problems. There was really only one way to find out.

There was no point in going to the doctor. He would probably only refer us to the pediatrician again ~ another exercise in futility. Butterfly's problems were clearly quite beyond him and he had already demonstrated an unwillingness to inform himself. We were on our own. But Bud was old enough that she had to be a willing participant in the experiment. I mean, there was nothing to stop her from going to the fridge for a piece of cheese when I was busy elsewhere if she wasn't on board. So we discussed it, and she was very simply at the stage of not feeling well that she was willing to try anything, even if it meant giving up her beloved cheese.

Alternative dairy products were not new to me. I had been on a dairy-free diet for years because of the colitis. It just wasn't something I always pushed onto my family. But now I stopped buying ice cream and bought the soy or rice alternative. I had been making chicken stroganoff all along. I switched the recipe from beef to chicken (because I couldn't have red meat), used chicken stock and tomato paste for the sauce, and used soy sour cream at the end. There were mushrooms and broccoli in there, and I served it on a bed of whole wheat noodles or brown rice pasta. It was a family favourite, so I made sure to make it a couple of times during our dairy-free two weeks. Nevertheless, keeping a growing girl happy without dairy was a tad more challenging than just making the adjustment for myself. After much experimenting, some of it blech-worthy, according to Bud, we settled on some alternative products that she liked, such as soy vanilla and chocolate milk. Both went well on whole grain cereals. She didn't like the dark, milk-free chocolate so much, so I focussed on dried fruit snacks for treats. Fruit and peanut butter had to fill in for those cheese snacks too, etc.

Feelin' better.

By the end of two weeks, the change in Butterfly was once again amazing. The dark circles were gone from under her eyes, which were again bright and vibrant. Her energy had returned to the point where she was driving me crazy. This was good! She had stopped complaining about dull, non-descript pain, anywhere. We had obviously found the source of her problem. But she was not happy. Butterfly LOVED her cheese, and when she realized what the results of our experiment meant, she became very resistant. She refused to eat ANYTHING if she couldn't have a cheeseburger and some mac and cheese.

I hated to do it, but it was moment of truth time. I bought her an organic mac and cheese mix, and some cheese slices and made her the mac and cheese for supper that night. She didn't look too good, but she didn't complain. She got up late the next morning and asked for her cheeseburger. I could see what was coming, but I said nothing and got to work on her burger. Within an hour after eating it, she looked very ill indeed. She was holding her stomach and kept rolling into a fetal position on the couch. She was in a lot of pain, obviously, and she kept saying her stomach hurt a lot. She was in so much sharp, terrible pain, that she actually asked to go to the hospital. But my instincts told me that getting into the car right then would be a very bad idea. Sure enough, within ten minutes of this, she upchucked. And I mean... now I don't want to gross anyone out, but I had honestly never seen any kid barf that much all at once in my life. When I thought she surely must be done, she barfed some more. I was half expecting a lung to come roaring out.

When she really did seem to be done, I helped her get cleaned up and I put her in my bed, which was easier to tend to her from. Yes, I wound up changing the bed, but the worst was over at least. Butterfly never insisted on eating anything with dairy again. And so, once again, we got on with life.

*Info on Leaky Gut Syndrome posted on Resource page

Sunday, July 25, 2010

The Chaos of Life

We struggled onward. Butterfly was doing fairly well in her studies. While basic arithmatic was hard for her, she did much better on logic problems and geometry. Punctuation was a mystery for her that we practiced over and over, but her brain just didn't even see the difference between an apostrophe and a comma. They're really the same, right? It's just matter of placement, and what's that?

But other studies were fun, learning about different parts of the world by doing some cultural cooking, or sampling a unique art style or type of music. Exploring science through projects, tv programs and the YES magazine her Nanna gave her for Christmas one year, as well as the work books. There was a big tv production on the history of Canada playing at the time, but each episode was mostly about this battle, and that battle. Butterfly simply had no tolerance for all the wars. So we took our own look at history by examining the accomplishments of any number of people: Ghandi, George Washington Carver, Nellie McClung, Amelia Earhart, Terry Fox and many more, so that we learned together that while war was how humanity solved its problems (and still is), it took a lot of inspired and courageous people to keep us going as a species down through history.
Most of the time she remembered where places were on the globe and map, but when she was in reaction, there was no way. On one test I gave her, I asked her to label Jamaica. She put it in Greenland. That's how I knew for sure I was dealing with a reaction. Then I just switched our studies to art or music.. or both. The art, however strangely created, kept her hands busy, and music... well, music really doth soothe the savage whatever.
By this time Butterfly was getting old enough to stay home alone for short periods of time, so I took a part-time job at a local store to try to get some bills paid. I laid down the rules for her while she was home alone. Bud was still a rather fearful child, so I really didn't worry about her breaking these rules. They were just common sense, like don't answer the door to strangers, don't try to cook anything alone, etc. My hours were usually around four hours in length, and quite often in the morning, when Butterfly preferred to sleep anyway. So I always left her a note with what was in the fridge for her brunch, when to expect me back, etc. I always ended my note with "Cya! Love Mom." If I ever forgot that ending on my note, I heard about it.

This actually went along fine for several months, with Butterfly and I squeezing in her schooling around my hours and errands with her Nanna ~ until my boss became ill. She had lung cancer and was going to require surgery. Everyone who worked there pitched in to fill in the spaces, but this sometimes left Butterfly alone for even longer hours, so sometimes I took her to work with me. The boss didn't mind, as long as she didn't get in the way. But Bud was pretty good at either helping out, or disappearing into the mall to do window shopping.

It was, of course, of paramount importance to keep Butterfly out of reaction during this time. I really didn't want her home alone with seriously impaired judgement, nor was I looking forward to any temper tantrums while at work. It was very stressful. I started having my own health problems. I have aluminum poisoning which resulted in colitis. It's usually in remission as long as I stay away from food and drink packaged in aluminum and stick to my own special diet. But with the increased hours, the added stress, and being in a hurry all the time, I found it difficult to look after myself properly, so I had a flare up. Not a good thing. Not at all.

The boss had her surgery and did really well, but she decided to sell the store. When it changed hands, I lost my job. It was just as well. I had paid down some of the bills, but needed at that point to turn my attention back to Butterfly, to my own health, and to Mom, who wasn't getting any younger and needed more and more help as time went on. By then I was driving her to her appointments, shopping and social events. And so life resumed at a saner pace. Bud came along too on Mom's appointments and errands of course, and we became known at certain places in town as the three generations of girls who went places together.

It was all something of a sociology lesson for Butterfly. She learned how to use the cash register at work, how to package stock, and was introduced to the basic concept of working for a living. She learned a little about time management, and some of the problems associated with aging. She also learned something that I think has gone out of style these days, and that's an appreciation for the unique perspective of elders. Bud's Nanna grew up in the big depression. My dad had been a veteran of WWII. In a pop culture that tends to either put the aging away in homes or pat them condescendingly on the head and disregard them, Butterfly was lucky enough to share in the rich mosaic of experience that comes with hanging out with a Nanna and an old Mom. I think this has given her a depth that many people don't imagine, much less acquire. I hope it helps her in life.

At the same time, Butterfly was learning about modern technology and its benefits as far as we could afford it. Mom and I continued to quizz her on math, geography and other subjects in the car. And when we got back to Mom's, we often had a game of old fashioned Scrabble. This helped keep Mom sharp, helped me relax a little, and contributed to Butterfly's language and spelling skills. At home we focussed on current events. This usually provided plenty of learning opportunities. For instance, it was around this time that the tsunami in Indonesia occurred, so I got information online at enchantedlearning.com about tsunamis and at the same time, we reviewed tectonic plates. Butterfly wanted to participate in tsunami relief, so she ran a little 'guess the number of jelly beans in the jar' game in town to raise money to donate to Unicef. This taught her a little about fund-raising, charities, and once again, the behaviour of that bizarre species we call people.

And so we settled into another new routine ~ for a little while.


Photos: "Mr. DeMille, I'm ready for my close-up"; biking in Spring.

Friday, July 23, 2010

Homeschooling, Socializing, Food Intolerances and People ~ Some Notes

This is what Pooh would call a complaining song, but these things need to be acknowledged, especially given the difficulties in teaching social subtleties to a child like Butterfly, to help her cope in a community that's often less than informed.


On Homeschooling

Some people found it necessary to offer an opinion on this, despite knowing little of us, nothing of Butterfly's challenges, and even less about homeschooling. One woman even told me that the government would take my child away if I didn't put her in school. There's a lot of ignorance out there, and it always has a mouth. Do your own thorough research on matters important to your family. Opinions are very easy to come by and are often concocted at a safe, uninformed distance. I like to think most of us want the facts. From my perspective, this is my kid, and I want what's best for her.


On Learning Difficulties

A couple of people in town told me they don't believe in them. I guess that was supposed to influence me somehow. I thanked them for sharing. Again, so easy to have an opinion when you know nothing about it and don't have to deal with the challenges close up, 24/7. I had to help Butterfly learn and cope in this world, so I had to be more responsible and better informed than that.

There will always be some things Butterfly can't do because her brain just doesn't work that way. I will never forget the day one woman decided to teach Butterfly how to tell time on a clock face in the five minutes she had to spare. She had been told Bud needed a digital watch to tell time because she couldn't do clock face. I guess this woman thought she'd show me up by teaching Butterfly something I hadn't been able to. She seemed to think it was my fault when she couldn't. People can be just mystifying.


On Socializing:

Some people insisted that Butterfly should have been in school to socialize with the other kids. Um, kids don't really go to school to socialize. In fact, unless school has changed an awful lot since I went, kids who socialize too much in class get into trouble. Is what goes on in the school yard really considered a good social education these days?

Ok, Butterfly may have met more kids in school, but I'm not sure this would have helped. From the kids who treated her badly, to the kids who were invited and expected for celebrations, but didn't show, Bud just didn't have a lot of luck with "friends." Now, the no-show people weren't being mean or anything. The one family called to cancel at the last minute because of a family emergency. That was just unfortunate for everyone. And another mom couldn't help that her ex had kept the kids an extra day. The phone rang; she apologized. What could she do? The thing is, for one good reason or another, the phone rang often, each time a shattering disappointment for Butterfly. I had hoped my child would learn that friends were people you could count on, but she was learning the very opposite.

She was pals with the girl next door for years, but she and her family were seasonal visiters and visits were spotty at best. They spoke on the computer for awhile when they got bigger, but after Bud happened to mention her autism one evening, the other girl suddenly didn't want to know her anymore. Bud no longer talks about her challenges with "friends." Call me terribly old fashioned, but in my day, "friends" were people you could confide in. I guess things are different now.

I decided to leave it alone. I figured out there are worse things than growing up without a gaggle of friends. When she did have successful events, she usually wound up exhausted, confused and even crying. So yeah, I went with "just leave it alone." The fewer the friends, the fewer the agonizing disappointments.


Butterfly and her friends


On Food Intolerances:

"Just a little." Famous last words from people who just didn't understand that a little of anything Butterfly couldn't have was just as bad as a lot of it. The amount made no difference. If a substance caused a reaction, it only took a wee bit to do it. What's difficult?

We were visiting a cousin of my mom's and she brought out a platter of cookies. She offered some to Butterfly, whereupon I quickly explained that Bud couldn't have any. She asked why not. Actually, she rather demanded, "why not!?" I explained Butterfly's wheat intolerance. She argued that the cookies were made with "just plain white flour." I'm not very often rendered speechless, but I just stared at her. I couldn't imagine what she thought "plain white flour" was made of. Fortunately my mom intervened and patiently explained that white, all purpose flour is made with processed wheat. Ok, maybe some people don't know that because they've never given it much thought. But why do people get upset when you can't eat their food?

There are many more stories I could relate about social events we attended that went all strange over food and refreshments. Some amusing, most not. It was never that we couldn't manage. I always carried supplies for Butterfly ~ unsweetened fruit juice drinkin' boxes and snack food. And it wasn't that I expected others to remember Bud's food intolerances. I only wanted them to understand that we had to be concerned about them when the food was served. Seemed simple enough to me, but I guess that's just me. There's a lack of understanding on my part too: like I don't understand why people get upset when you can't eat their food, or why they act like we're crazy to actually think our kid has all these challenges. I've always tried to keep a sense of humour about it all, but sometimes that's difficult.

I do want to also be sure to express my admiration and deep gratitude for those who did rise to the occasion ~ those who understood and did their best to be accomodating. It's really cool and very refreshing to encounter others who think that a child's needs are more important than adult convenience and ego.

Parents of kids like mine are doing their best to figure out what foods and other substances their kids can and can't have. They're having to cope with behaviour anomalies and mercurial mood swings that are often loud, violent and frightening. They and their child(ren) are learning the best way they know how to cope with learning and living challenges, as well as the innocent child's tortured confusion about what is happening to them. This, while many of the professionals who should be helping us are busy debating the "science" of our kids' problems.

Those of the rest of you who can't give us your understanding and support, need to at least respect our "jurisdiction" over our children. If you have nothing genuinely informed to offer, then don't say anything. Platitudes are about as useful as old wives' tales and silly assumptions. An uninformed opinion is useless, so keep it. If you can't help, at least don't add to our burdens by trying to show us up, put us down, reveal the terribly obvious, or hand us nonsense. Shut it and just listen. The sound you hear is a child's heartbeat. A child who needs ~ and deserves ~ extra attention. At least we're doing our best.

Thursday, July 22, 2010

The Police Are Called

One morning Butterfly slept in a little later than usual and got up on the grumpy side of bed, to put it mildly. We figured we were dealing with an instance of low blood sugar, so I wanted to get some protein into her quickly. She demanded fried potatoes. Now, that's mostly carbs and it just didn't seem like a good idea to give her only potatoes under the circumstances. I thought a couple of eggs would be a good idea, with potatoes was fine. But there was no reasonable discussion about it. All I got out of my mouth was, "no, you can't have just...." when she flew into a rage and, to put it simply, she trashed the house.

Now quite truthfully, our house is never neat and tidy anyhow. The second time I brought Butterfly's dad into my apartment when we were dating, he said, "everything is in the same place." Well, yeah. Of course it was. A place for everything, and everything in its place. I realize in hindsight that this observation of his had significance, but I chose to overlook it at the time because I thought he was cute. Eventually we got married and I had his child. Outnumbered. A place for everything, and everything in its place? Yeah. Right. The very concept is a faint memory.

Nevertheless, Butterfly trashed our home. As messy as it already was, she found ways of tossing, knocking over, kicking and throwing things to make it much, much worse. Then she barricaded herself into our room by throwing my ironing board in front of the folding door. (This type of door is not slamable.) This would not do. Regardless of what was at work on her brain, this was simply not acceptable, and messy house or no, I was not going to let it go by. I called the police.

Two officers arrived, one male, one female. Hubby and I stayed on the deck and chatted with the man, while the woman went into the house to talk to Butterfly. This was at my request, because I figured a 6' 4" man in a uniform approaching Butterfly would scare her beyond communication. I told the woman where to find Butterfly and she went in. She got the bedroom door open and moved the ironing board. After about 20 minutes she came out and told me that she had talked to Butterfly about doing property damage and told her she could take her away for what she did. Then she said that Butterfly "withdrew."

She seemed a little flustered, but I had no way of knowing what all was said. She checked with us that we didn't actually want them to take her away, and I shook my head. I told her we just wanted very firm boundaries drawn that Butterfly would remember, even if she was in reaction. The officer nodded and said they didn't mind doing that. She thought she'd made an impression on our daughter. All Butterfly told me later was that the police woman threatened to take her away from her cat, and she didn't like that.

After the police left, I took full advantage of the moment and told Butterfly she had to come and eat or we'd call the police back. She glowered as she ate, but once she was fed, eggs and potato, she was much calmer. I spent the remainder of the day putting things back where they belonged. The house wound up tidier than it had been for awhile. Even more important, memorable boundaries had been drawn and were indelibly etched in Butterfly's mind. While Butterfly's reactions and blow ups continued at regular intervals, she never again tried to trash the house. Occasionally when her anger seemed to be getting out of hand, she was reminded that the police were only a phone call away, and I would not hesitate to call them again if her actions warranted it.

We never had to call them again.

Tuesday, July 20, 2010

Something is Terribly Wrong

Ok, so social disabilities should be accepted with more grace and tolerance out there in the world. But here at home, a child behaving like a trapped, angry animal is much, much scarier stuff that needs attention. Something was indeed terribly wrong. Things had been going along fine. We had noticed that Butterfly's behaviour deteriorated when her blood sugar got low, so we adjusted our daily habits to make sure she had food at very regular intervals. And of course, there were unexpected reactions and blow ups, but we'd been there before, so we took them in stride. This was different. Suddenly in the evenings she'd start behaving like a trapped animal. She'd try to intentionally provoke us, to get our attention, and she'd keep it up with increasingly dangerous behaviour until she got it. She'd go into her room, get up on her bed, and stand, back and opened hands against the wall, as if she was trapped. She wasn't, but her eyes would dart from side to side as if looking for an exit. She knew where the exit was, but this was a bizarre nightmare scenerio of her own construct that some crossed wire in her brain really didn't want to escape.

When her behaviour became aggressive, we had to subdue her, so she wouldn't hurt herself.. or wreck the house, or hurt us. It took both of us, and we just held her down and told her repeatedly to stop the violent behaviour. But she wouldn't, at least, not until we spanked her. We put it off each time until there was no other recourse, hoping she would respond to us. I just didn't believe in punishing her when she was in reaction and I wasn't a big fan of corporal punishment any time, but in this instance, a couple of measured whacks to the bum was the only thing that would stop her. Then she would start to cry, probably out of frustration, perhaps even out of relief. Only then would she calm down and sit next to me, and I could put my arm around her and comfort her. Then she would plead with me to figure out what was wrong with her. Clearly it wasn't something she was doing, so much as something that was happening to her.

After double and triple checking her diet we couldn't find anything she'd ingested that she wasn't allowed to have. We turned to the doctor, but all he could think to do was make another appointment with the pediatrician. I was perplexed. I didn't know what good that was supposed to do when her speciality was diagnosing ADHD, and Butterfly had already been diagnosed. I remembered the words of the allergist when he told me to trust my own instincts. I decided he was the person we needed to see. It was unusual to be able to get an appointment after so long without a referral, but we got one.

While we were waiting for the appointment, I noticed that those evenings when this happened, Butterfly had been given dessert with maple syrup on it. Now, she'd been having maple syrup and honey both, with no ill effect, since I removed sugar from her diet. Still, I wondered if it could have something to do with these attacks of violent behaviour. So I stopped giving it to her ~ in or on anything. The difference was a little astounding. When we went to the allergist, he put her through a number of tests, including the standard skin test that revealed an allergy to maple. She had also become sensitive to the honey.
After keeping her off both for a couple of weeks she had settled right down again. But she was still a very unhappy Butterfly. I mean, we had tried stevia as a sweetener in baking, but we could only get it as an herb back then, and it really didn't work. I decided to just try her on sugar again. There was no reaction. So I made things like banana bread with sweet, ripe bananas so I only had to add a little sugar to make it sweet enough. It turned out she could also have molasses, which was huge for baking cookies. And since wheat hadn't shown up this time on her skin test, I also let her try wheat. (The doctor had assured us that she would grow out of this allergy, but he wasn't exactly batting a thousand with us. He was right on this though.) She didn't react to it, so I began including wheat in her diet. I didn't just abandon the spelt though... I was used to baking with it anyway. But real hot dog and hamburger buns! Imagine!

We kept that appointment with the pediatician, but as I suspected, it was a waste of mileage and time. She had nothing for us that would help. The allergist had indeed been the right choice for the situation. Obviously with Butterfly, not having too much of anything too often was important, or she'd be liable to become intolerant of it. So we kept up a variety in her diet, and now with wheat and a little sugar, we were able to branch out that much more.

It wound up that what she couldn't have at that point was honey, maple syrup, corn syrup, glucose syrup, and no MSG or propylene glycol. She could have sugar only in moderation, and of course, variety was a must. I'd also found where I could get free-range chicken, and then a new store opened in town with natural meats and organics. So things were once again looking up, despite some very scary happenings. It wasn't possible to get too comfortable though, because with Butterfly, you just never knew what was going to come next.

Sunday, July 18, 2010

Can't Change the Child, Change the Mama

Asperger's Syndrome, it turned out, is a set of fairly specific symptoms on the high-functioning end of the autism spectrum. This, and the confirmed learning difficulties, clarified for me just what I had to deal with. Problem was, I just wasn't sure what to do about it. This is where Rita, the psychologist, came in, again. We discussed some of the seemingly insurmountable problems that came with Butterfly's challenges.
For instance, how was I supposed to get her to learn cursive writing? Rita gave me a case history to read that was all about a girl who didn't learn cursive writing until she was 15. By the time she was 20, who knew when she'd learned it? Who even asked? Who even cared?

Ok, point taken. I could make that adjustment, no problem. I simply stopped putting cursive writing exercises in front of Butterfly and I stopped worrying about it. She wasn't ready to learn it,* and I wasn't ready to go bald pulling my hair out over it. I wasn't being all that obsessed with the school curriculum anyway. I was only following it loosely for guidance on which workbooks to get. No writing meant both our lives were easier and less stressful, and learning was more pleasant. Geography games, art and science projects, dinosaurs and outer space were more fun anyway. Making that paper mache volcano and making it explode was a hoot. So then, on with our other studies.

Now then, how about that very messy room with the super neat oasis in the middle of it that was her bed and her prized possessions? It was a little strange really, but apparently not unusual for an Aspie. So Rita gave me another case history to read. In this one, a mom was insisting that her daughter clean her room. She left her daughter to work on that and came back after an hour, only to find the girl sitting on the end of her bed, crying. Nothing had been done. The girl honestly didn't know what her mom wanted her to do. Mom saw a mess. The girl didn't.

Ok, so I knew Butterfly saw the mess, but I also knew she couldn't cope with it. What happened with Butterfly, whether she was looking at her messy room or a page of math problems, was that she saw the whole thing and was overwhelmed by it. Time and again I would hand her a page of math and she would panic. So I would step in and get her to focus only on problem one, and when she was done that, only on problem two, and so on. So often when she was through the whole page of math, she'd turn to me and say, "that wasn't so hard, Mom." And yet, the next time I put a page of math in front of her, she'd panic all over again. She never learned to see one problem at a time on her own ~ she just doesn't see that way. When we got to logic problems, I always gave them to her one at time.

I attempted the same approach with her room, telling her to just pick up the books. After that I was going to get her to just pick up the clothes, but we never got there. She'd pick up the books on top of the mess, look at her room and not be able to see any difference. No, there was nothing wrong with her eyesight. It was just a matter of perception. And when she perceived that her room was just as messy as it was before she picked up those books, she'd get upset. The only time Butterfly could clean her room, even a little, was when she was in reaction. Apparently Ms. Hyde was a tad neater than Ms. Jekyll, but it was so not worth it. Not at all.

Overall, what I learned about Asperger's is that it was my expectations that had to change, because Butterfly couldn't, and wasn't going to. I think this is a real stumbling block for a lot of people, including many of those in the medical community. The emphasis always seems to be on getting these kids to change... to make them conform to the general idea of what is "normal." When we encounter people who have a different way of being human, we have trouble accepting it. We want to find some magic solution, like a program or a pill, that will "cure" what they have or alter their behaviour to conform to our needs and expectations. But maybe what needs to change is the rest of us. I have too often seen Butterfly treated like some sort of lesser being because she wasn't like everyone else. It makes me wonder who is really the most socially inept: people like Butterfly who don't "get" the nuances of relationships; or those who can't cope, with humility, grace or imagination, with people who are different.


* Butterfly taught herself cursive writing when she was 13, at roughly the same time she taught herself Braille, just because she was interested and wanted to.

Saturday, July 17, 2010

Those Tests

When you go to a counselling facility, you're supposed to be wanting some counselling. Not that everything in our challenging lives was perfect, but we weren't there for that. And I wasn't looking forward to having to explain Butterfly's food intolerances and reactions to someone accustomed to resolving family rifts. But I did. Some of what the counsellor had to say was interesting, but mostly she addressed Butterfly's oppositional behaviour as if she was a "normal" kid. A lot of people see extra challenges as "excuses," because if you haven't seen them, you don't necessarily believe them.
But I persisted, and told the counsellor about Butterfly's dance lessons. Yes, she had a whole season of jazz and tap, and at the end-of-year recital, she was the only one who didn't know the dance moves in the group numbers. This, despite the fact that she'd had more lessons than the other kids, including some private sessions, because they were ALL from homes having marital difficulties and were variously absent from classes during those visits with Dad. (The dance instructor actually told us we were very odd because we were the only parents who were together.)

I had been doing my own research on-line again, and had discovered a site that described learning disabilities. I was sure Butterfly had Dyscalculia, described as the inability to remember dance moves, read clock faces, remember even simple math... hmmm. It all sounded remarkably familiar. And like a lot of people, I had assumed that reading and writing came from the same place in the brain. But they don't. So even though Butterfly's reading and comprehension was good, her inability to understand even basic grammar or to write properly was probably Dysgraphia.

After dance hadn't worked out, we put Bud into a gym class. The idea of all this was to help her focus with controlled activities, as well as to put her with kids her own age for awhile. She played a season of local kids' baseball as well. She did ok in the gym activities, but I noticed that some of the young coaches weren't including her. This is something we kept encountering. Bud was shy and distant with others and tended to stand off to one side, as if trying to blend in with the background. So she kept being left out of activities, instead of being encouraged to step up. This is not what we were paying for, so the gym classes didn't last long. But while she was there, I also noticed that she was dragging her right leg and foot. She got through most activities all right, but her right foot was always lower and finished behind the rest of her. She couldn't make it over the pommel horse, because she just didn't get her right foot up high enough. This suggested to me that there was some sort of damage on the left side of Bud's brain.

I was telling the counsellor about this and guessing that I was going to have to embark on some sort of study of the human brain, when she suggested that she arrange some testing for Butterfly. Well, ok then. Not only did we finally get there, we lucked out with the psychologist who did the testing. I'll call her Rita. So, Rita did a lot of testing of kids like Butterfly in the local school system, and while she didn't reveal any identities, she did tell us some horror stories about some of the kids she had to deal with. This made me all the more determined to stick with homeschooling. In fact, Rita was a big fan of the idea and the possibilities it held for kids with special needs. At last! Some understanding and support!

It was summer and school was out, so Rita had lots of time to give Butterfly thorough testing. They confirmed my suspicions about the learning difficulties and more. Rita told me to look up Asperger's Syndrome on the internet, and proceed accordingly.

Friday, July 16, 2010

Diagnosis and Lessons

It was shortly after deciding to homeschool Butterfly that our doctor thought it a good idea to send her to a pediatrician for diagnosis of her hyperactivity and difficulty focusing. It was ok with me, so off we went. At the end, Butterfly was officially diagnosed as having Attention Deficit Hyperactivity Disorder. (No kidding.) The usual treatment for this was to put the child on medication such as Ritalin. But I had been reading up on the side effects, as well as the suspected relationship to the development of Tourette's Syndrome in such kids. I also felt that one of the compelling reasons for putting kids on these meds was for the convenience of the public school system... to make things easier for overburdened teachers. But I wanted to get at the root of Butterfly's problems, not just mask or disguise them with meds. Also, since we knew she reacted to certain foods, it just didn't seem fair to send her up the wall with as yet unidentified food intolerances, then bring her down again with a pill. It just wasn't the way I wanted to go.

That said, understand that this decision was for our own situation; I'm not judging anyone else's. Every kid is different, as well as every situation. I had web site conversations with moms who'd put their kids on medication and these children were doing great. For one thing, these moms hadn't noticed any particular problems with diet. So, each situation has to be evaluated on its own, with each contributing factor weighed. My hubby and I did that with our family's needs in mind. Obviously if I was homeschooling, I wasn't working outside the home. This impacted once again on our potential income, but we had gotten used to never having enough money, and once again, I wasn't making any long term plans. Nothing was carved in stone. It just seemed best to keep Butterfly home at least until she was old enough to understand that she couldn't ingest certain things without having problems. She could be put in school once she was old enough, or if the homeschooling didn't work out. Then I could always review the matter of medication, and I could look for part time work.

So we went ahead with homeschooling, special diet, no meds.

Now, it doesn't particularly benefit homeschoolers to simulate a classroom for one child. A classroom isn't actually the best learning environment, it's just what works best with 20 to 30 kids all at once. But I had one. Oh, we got her a little used school desk and she sat at that in the living room to do some of her workbook pages. But we also sat together at the table, did experiments in the kitchen and got out of the house.. a lot. Seems to me if you're learning about lakes, going to a lake is a good idea. Same thing wetlands, woods and other natural environs. History was learned at the local historical sites and museums. Art was learned partly here with art colouring pages and art projects, but also at art displays, art stores, even craft sales.

One cool, Autumn day while we were still at Mom's, Butterfly had just finished a bath when we heard a sudden ruckus outside. It was migrating grackles landing in Nanna's trees and all over the road. They were after the beechnuts and oh, what a racket they made! More curious than fearful, Butterfly ventured out onto the deck, still barefoot, to watch them. They rose in dark waves off the roadway, only to land a little ways off. She was enthralled with those noisy birds, and no opportunity for learning missed, we got out the atlas and turned to the chapter on bird migration ~ the routes, the birds, the time of year... That was a lesson that "took."

And out in the community, she learned about economics from shopping and when some people demanded to know why she wasn't in school, she learned about social skills, and how not to behave. I always replied with, "she is in school." Even while we were driving around, Mom and I quizzed her with math or civics questions. At home, we spent five weeks on vowels, because they were giving her a hard time. (The public school would not have spent five weeks on this, and she would have been left behind.) We did jeopardy-like rhyming games, wrote silly stories on her white board, and more. Finally, something clicked, and Butterfly has never looked back. She began calling out street and store signs from the back seat of the car. She started whizzing along with her reading and reading comprehension assignments, and she was well on her way to becoming a voracious reader, gobbling up such series as The Boxcar Kids, Little House on the Prairie, Nancy Drew, The Hardy Boys, The Chronicles of Narnia, Harry Potter and Pendragon.

When we were done our lessons for the day, educational TV filled in the spaces. No, I didn't use TV as a babysitter. A TV can't wipe a runny nose, get snacks, or answer questions. No commercial TV was allowed while Butterfly was little. We didn't need her wanting this thing and that thing as advertised on TV. She started with shows like Sesame Street, and worked up to Popular Mechanics for Kids, National Geographic, the Kratt Brothers' shows and other programs of learning value. At our house, TV was an educational tool (at least until Butterfly was in bed).

As well as some things were going, there were problems: I noticed that she couldn't remember the arithmatic she'd learned, even if it was only the next day that I reviewed it. Same thing with learning to tell time. I showed her about a hundred times, no exaggeration, how to read a clock face, and while we were doing the work book pages, she could do it. But give it even just a couple of hours, and she couldn't anymore. This... this was not clicking. And while Butterfly's reading skills were great, she couldn't learn cursive writing. She wrote her letters in big, sloppy block capitals, and she couldn't seem to do anything else. Learning cursive writing was becoming a real stumbling block and a source of stress for both of us. I needed some help with this, but we couldn't afford private help. We turned to a social services family counselling unit. I wanted her tested, but we had to jump through some hoops first.

Thursday, July 15, 2010

Moving

Hubby was done his courses for the year. He found an internship for the summer, and that got his foot in the door. At the end of the summer they offered him a job. Since he went back to school in the first place to get a job, he took it. It wasn't a lot of hours at first, but it turned into full time before too long, which is what he had bet on. We were able to catch up on a few bills, then decided we needed to move. Where we were living was ok while he was commuting to the college, but his job was off in another direction and we wanted to get closer. Also, my mom wasn't getting any younger and she hadn't been feeling well. It was a distance to go if she needed us to help out with anything, so we decided we needed to be closer.

We weren't sure what we were going to do ~ we had talked with Mom about selling her place and getting a place for all of us. But none of us were sure how that would work out. So we moved to Mom's and put a used tent trailer in the back yard for us to sleep in. I did the cooking and most of the chores, so Mom was able to take it easy and get better.

I was a little worried about Bud because it seemed to me a kid like her needed stability in her life. But Hubby thought as long as she was with us, she was home. Anyway, Bud was no stranger to her Nanna's place. As it turned out, Bud was fine, except when she was in reaction of course. And then there was the fact that I spent most evenings trying to get her to go to sleep. She was getting too big to rock, but her sleep problems persisted. I would read to her, lie down with her and sing her favourite songs. Sleeping has always been difficult for Butterfly. This didn't do anything for my evenings either, but I usually got her to sleep before Hubby went to bed.

The rest of us had a few challenges too. It was a little awkward at Mom's because Hubby wanted to be the man of house and he really wasn't there. It was her place, and she had her routines. And then I sometimes felt as if I had to choose between my mother and my husband... the mother-in-law thing. Pick sides? Oh no.. I didn't want to be going there. Thing is, Mom and I were close and got along great, and I didn't want to lose that. Nor did I want to lose my man.

And Bud? Well, there were a few times when I was turning in tight circles in the kitchen because she was calling me from one direction and Mom from the other. Then there was the time Mom, Bud and I went swimming in the local lake. There I was watching over my little kid, and suddenly Mom was in trouble. She wasn't a strong swimmer and had gone a bit too deep. I couldn't leave Bud alone in the water, so I spoke to Mom, "stay calm... you're ok. Just kick and paddle slowly and make your way toward me." Fortunately, she didn't panic and she was fine. But I never took the two of them swimming again. We did go to another beach once, but Mom was content to sit on the beach under an umbrella and watch Bud and me in the water.

But I digress. All and all, it was looking like it was best for us to find some place just for ourselves close to Mom's. Then Hubby could be king of his castle, Mom could keep her independence a while longer, and I could focus on raising and educating Bud. We wound up staying at Mom's a little longer than planned to save for that down payment and find a suitable place nearby. We were at her place just under a year when we found a little cottage only 7 kms away around the lake. It was small, but not as cramped as all of us were at Mom's. We've been here since... sort of.

And did I say educating Bud? Yes I did. I began homeschooling Butterfly while we were still at Mom's. I had been reading up on it and thought it was a good fit for her. As I had learned with daycare, sending her to public school was probably only going to result in her being in reaction most of the time, and I well knew what that would do to her ability to learn and to her immune system, not to mention our sanity. It wouldn't help anyone if she was either in reaction or ill most of the time. Moreover, I just didn't believe for one minute that this child would be able to sit still at a desk for the length of time required in a classroom. So I decided to try this homeschooling thing. I made no long term plans, but I found the work books at the department store. We left the blocks and baby story books behind and moved onto more challenging aspects of colours, shapes, numbers and letters. It was going fairly well, so I just kept going.

Tuesday, July 13, 2010

Mr. Stop Sign


One day we were shopping in town and we decided to go into a new flea market that had opened in one of the old buildings on Main Street. There was some interesting stuff in there, and we always checked out places like this, because thrift shops and flea markets suited our budgetary needs. At one stall there was a glass case with some kids' toys. In there was a used hand puppet ~ a clown. Butterfly was quite taken by it, so I bought it for her. At 50 cents it wasn't something I'd deny her. And some instinct was telling me that a hand puppet had possibilities.

On the way home I asked Butterfly what she was going to call her new toy. Almost immediately, she said, "Mr. Stop Sign." Ok, I have no idea where that came from, but whatever she liked. Mr. Stop Sign became an instant favourite. She was hardly ever apart from this little toy. Where we went, Mr. Stop Sign went, usually in Butterfly's arms. (But when I look through old pictures, I see it was necessary for most of us close to her to be photographed with the little guy.)

A couple of days after we brought him home, Butterfly and I, and Mr. Stop Sign, were sitting in the living room together, and I picked him up and put him on my hand. I gave him a high pitched little voice and ask Bud how she was doing. She answered, while looking at him, that she was ok. Next thing I knew, we were having a major conversation, with Butterfly telling the puppet everything that was going on in her head, and in her heart. Hmmmm.

So Mr. Stop Sign became a valued guest at all tea parties. He was even welcome at the dining table. Even when no one else was around, I overheard Butterfly confiding in him. She had a fantastic vocabulary for a kid her age, and she had no trouble expressing what she wanted, whether it was food, or consumer goods, or what she wanted to do now. But she could never express her feelings. That is, until Mr. Stop Sign came to us. When he was there, she would confide her innermost thoughts and feelings in a soft, little voice I had never heard before. And she'd sometimes do so even if I was right there. I just didn't interfere. It seemed best to be a mere observer, not a participant, except to provide his voice. But that was him. I was just there, kind of hangin' around, without a lot to say ~ at least, not in my own voice.

When Butterfly was learning more about numbers, letters, shapes and colours, Mr. Stop Sign assisted. When she wasn't feeling well, Mr. Stop Sign got to the heart of the matter and found out where it hurt. Then he comforted her. The only time Mr. Stop Sign couldn't help, was when Butterfly was lost in a particularly destructive reaction. Then her face and her eyes darkened over, and she clammed up. When this happened, I couldn't help thinking of Rosemary's Baby, wondering what I'd spawned. But it wasn't her, of course. She was a sweet, good kid when something didn't have hold of her brain. At those times, out came the things I used to monitor her reaction and keep her distracted. There would be no crafts, no learning, no anything useful for four days. Reading books (and usually not getting through them), scribbling, music, singing, and hammering on wood with a toy hammer ~ whatever she would do to keep her busy and out of trouble was what we aimed for. She was very oppositional, so the best way to get her to do what I wanted her to do, was to tell her not to do it. Even when she seemed safely distracted for awhile, if I turned my back for scarcely a minute, there'd be fresh scribbles on the wall ~ with indelible marker sometimes. Or something would disappear ~ often something important. Or something would get scratched, spilled, cut, torn or broken... like the time she picked up a handful of gravel and "scrubbed" the hood of her Nanna's car with it. (Those scratches never came off.) Or the time she got hold of scissors and cut a crocheted blanket Mom had made for me. Reactions were destructive ~ and exhausting.

We got through them with the easel and crayons (oft replaced), play dough, that toy hammer, and out came an old quilt that I used to put over the dining room table. That created a "cave" for Butterfly, where she could hide and ponder her broken thoughts. Mr. Stop Sign came back into the picture when the affects of the reaction were wearing off. She held him close and usually looked a little lost. But as the darkness faded from her face and eyes, the real Butterfly slowly emerged again. The sheets of scribbles were discarded, the quilt was put away, and a collective sigh of relief filled the house.

Mr. Stop Sign was part of the family for several years. Butterfly soon got too old to confide in him in front of me. But he still attended every occasion, went on all shopping trips and appointments, gave and got greeting cards, and gifts as well. I think that was the best 50 cents I ever spent in my whole life.


Pictures: Above, Butterfly with Mr. Stop Sign; below that, Bud's Nanna poses with the little guy.

Just A Spoonful of Sugar...

... made Butterfly angry and mean. There was a notable difference in Butterfly's behaviour after removing all that other stuff from her diet, but there was still a problem. The thing is, each time something was eliminated, it made a difference in her that was noticeable. Yet after awhile, we'd realize that something was still not right, usually because of a sudden change in her behaviour that was unwarranted and surprising. It all seemed like so many stepping stones across a wild stream of varied currents ~ each stone closer to calmer waters and the prized farther shore. But always one more stepping stone to go. And so it was when I began to realize the difference refined sugar was making to her temper, the frequency of tantrums, etc. right after ingesting candy, for instance. I really didn't need to have to deal with one more thing removed from her diet, but I couldn't escape the reality that refined sugar was simply going to have to go. Ok, avoiding wheat was getting easier, and we had adjusted to candies like salt water toffees that had no artificial colouring. But sugar? Oy.



One of Butterfly's favourite things when she was a toddler was Jello, but when colour had to go, so did Jello. When sugar had to go too, my mom came up with an idea. She used flavourless, colourless gelatin in the making of one type of cheesecake, so she suggested I get some and make jelly with it somehow. So I did. I got unsweetened grape juice and used it to make grape jelly dessert. It was one thing that made the transition easier, because while Butterfly lost some favourite things, she got one back. I made plain grape jelly, and later I sometimes added fruit. It became a mainstay for a little while. Unsweetened fruit juice became her drink of choice at meals and snack time. Things like cheddar cheese and sliced apples and/or grapes, and other fruits were her snacks and desserts, when there wasn't jelly. She loved an orange cut into wedges because they aren't just yummy, they're fun. Peaches canned in fruit juice instead of sugar syrup were good; pears too. I made apple sauce from locally grown MacIntosh apples, because they don't need any sugar added anyway.

It was easier to find meats with no sugar in those days. The onslaught of high fructose corn syrup in almost everything wasn't in full swing yet. Prepared meats often had it though, so they were iffy at best. Better to buy a larger than needed roast, serve it for supper with potatoes and veggies, then cut lunches from the leftover meat. And I made non-wheat pastas ~ I found tomato sauce that didn't have sugar in it and added meat and veggies. Did my child grow up without french fries? Absolutely not. I bought locally grown potatoes and saved the large ones for fries, slicing them into strips and frying them in oil, then serving them with vinegar, sea salt and Parmesan cheese. I started using more herbs and spices in food to add flavour that was preferable to just the sugar and salt in many foods.

Spelt pancakes became a favourite, with no sugar in the batter, but sometimes fruit, and a tiddle of maple syrup drizzled over them. No one cared that the pancakes were a little flat.... "flat as a pancake" applied, but they were yum. I routinely made a large batch of small, "silver dollar" pancakes, served some right away, and froze the rest. Then I just popped some off the frozen pile for subsequent breakfasts, warming them in the microwave, so we had our own quick breakfasts. (If you try this, warm them slowly on low heat, or you'll turn your pancakes into hockey pucks. I warmed them on the "thaw" setting for a minute per pancake.)

I had long since gotten used to the fact that I had to cook and bake ~ no night off at the local fast food joint. Making the kind of meat and pototoes meals I had grown up on was easy. But making the adjustment to no sugar in breads and muffins was probably the hardest part of this. Baking with spelt was challenging anyway. Without sugar, how was I supposed to make it rise and taste good? The obvious answer was honey, but you can't just substitute a half cup honey for a half cup sugar, it's more complex than that. So I cut down on the number of different things I made and just focused on getting a few things right. Breads and muffins were the most needed, so that's what I concentrated on. I found that by adding apple sauce and spices like cinnamon to them, the results were sweeter and tastier. Cinnamon cookies became a favourite treat, and because we didn't have money to buy gifts, we often made these cookies together in the shape of big hearts to give to people for special occasions, such as Mother's and Father's Day, or Valentine's Day. Bud's Nanna was always happy to get a big cookie and a homemade card as her gift. Cakes were very difficult, but I did my best as occasion demanded and at least they were all better than that first one. I made icing using whipped egg whites with warm honey drizzled in for both cakes and cookies.

Even though we were renting, I started a garden. It was useful on a few levels ~ it was great to have this source of food, but I also involved Butterfly as much as I could in an attempt to re-focus her tendency for destruction into something constructive. To this end, the art easle just stayed out in the living room, we didn't just bake food, but also things like salt dough from which we made Christmas ornaments, and gardening was also about wheelbarrow rides to make it fun. One perplexing challenge with the garden was keeping it safe from the weed killer people who did the lawn next door. Wind drift damaged my herbs a couple of times and I'm sure it didn't do Butterfly any good either. She was sensitive to most toxins, but conveying this to people set in their ways was difficult. This bizarre fear of dandelions and the need for a green lawn was apparently more important to some people than the health of a child. Frustrating.

But inside, in the kitchen, I experimented, we baked and learned. Our food was basic, but healthy and good. We had fun with salt dough, we coloured Easter eggs with beet juice, onion skins and blueberries. We froze unsweetened fruit juice in those popsicle trays so Butterfly could enjoy frozen treats. We went to the local maple syrup festival to keep her in maple sugar treats... handed out sparingly. We found gummy bears at the local health food store that were made with unsweetened fruit juice. And so Butterfly grew and learned and we all enjoyed brief periods of relative calm when we managed to keep all the problem foods we knew about out of her diet.

Sunday, July 11, 2010

Fears and Toilet Training

Butterfly had a bizarre fear of spherical objects. If she saw a ball, for instance, she would crawl or walk away ~ fearfully. If she saw the moon in the sky late in the afternoon, she would want to go in. One day when Butterfly and I were sitting on the front porch of that little house, her dad, thinking to surprise her ~ in a good way ~ came trotting around the corner of the house blowing bubbles. He had bought the bubble stuff for her. But when she saw those little, translucent spheres floating toward her, she ran into the house screaming.

One time we were visiting friends and were sitting, chatting in the kitchen as Butterfly played contentedly on the floor. Their grown son, who was also visiting, came into the kitchen with a ball. I put up my hand and said, "No.. no.. she'll be afraid of that. Please put it away."

But apparently he didn't believe me, or had some strange need to put it to the test, so he rolled the ball toward her. So there's a baby on the floor with huge eyes, looking for the nearest exit. Why do people do things like that? Did he really think I didn't know my baby? "Oh yeah.. look at that," he says, as if it's all about a new discovery for him, to hell with the kid. I picked her up, of course, and glared at him, the twit.


When I was toilet training Butterfly, it was going along fine, at first. But then one late afternoon she saw a full moon out the little window above the toilet. That changed things. She had run from the bathroom and I couldn't coax her back in. This wouldn't do. You can't toilet train a kid who won't go near the toilet. So first I put curtains on the offending window. I showed them to her, but she was unimpressed. She still wouldn't go into the bathroom, not for love nor money... nor even treats. So then I sat down on the side of the tub with her favourite book and started reading ~ loud enough for her to know that Mommy was in there reading, but too softly for her to hear it clearly from outside the room. The door was ajar, of course. She opened it more. She glanced at the window. The curtain was still in place. She ventured a little closer, I read just a little more softly. After a few minutes she was sitting at my feet enjoying the story, seeming to have forgotten all about the dreaded man in the moon. I had no more trouble getting her in there. I simply kept that curtain closed. Her toilet training resumed and before long the diapers were gone for good.

With Butterfly's demeanor and focus improved a little at least, I started figuring out new ways to tell if she'd had anything she shouldn't. When she was a toddler, it was sometimes difficult to tell an ordinary kid tantrum from a reaction. So when her behaviour was out of whack, I'd pull out the easle and ask her to draw a picture ~ like a house for instance. If she was just being tempermental, this would distract her. And she was, thankfully at those times, easy to distract. But if it was a reaction, this picture wouldn't look anything like a house. Normally she would start with a basic shape, as she'd been taught. But in reaction there would be nothing on the page but scrawls and scribbles. Sometimes rather loud and violent scribbles. Then I knew for sure what I was dealing with. On the second day, the scribbles would be a little less frantic, and so on, until usually by the fourth day, the picture would resemble that house, or whatever. This told me that it took about four days for a toxin to leave her system. When she started learning to count, she could get to 11 at one point, but if she was in reaction, she wouldn't get past 3. This frustrated her, but spoke volumes to me. I made note of how a reaction impacted on her mental acuity, and I reviewed what she'd ingested, again.

The learning continued, for both of us.

Saturday, July 10, 2010

The Feingold Cookbook and Sleep

It was after I started using recipes out of the Feingold Cookbook that our lives took on a slightly saner pace. There were a few times when I actually got Butterfly to take an afternoon nap, something that usually just didn't happen. One time she fell asleep on my lap as I was reading to her. I actually hadn't noticed, except it seemed strange she was being so still. Butterfly was never actually still. She was snuggled into me and I couldn't actually see her face, so I just kept reading. It was Hubby who walked over, had a good look at her, and told me she was asleep. It certainly explained her stillness, but I had trouble believing it all the same. But, I gently laid her on the couch and covered her up.

Another time she fell asleep on the couch, I'd been explaining the fogginess of the windows. It was late fall and it was blowing cold outside. I wondered if I'd actually bored her to sleep and pondered what other bits of educational information I could bore her with another time. She was still snoozing when her dad came home. As he stood over her, marveling that she was really sleeping, she woke up, rubbed her eyes, sat up and looked at the windows. Then pointing, she said, "look Dad, condensation."

The look on his face was hilarious. He said later it was amazing enough to see her napping, but she woke up with a bigger vocabulary than his. She was two, and yes, the sparkle was starting to come back. We got glimpses of it, here and there.

Butterfly napped on those occasions because she wasn't in reaction. She was just Butterfly ~ the little girl who liked to have tea parties and do arts and crafts. Butterfly who was learning to count. Butterfly the bright, curious little cherub. But many other times, it was difficult for Butterfly to sleep at any time of day. During the afternoon I would read to her, or rock her and sing her favourites songs, like Piano Roll Blues or Teddy Bear's Picnic. Or I'd make up silly tunes ~ Butterfly has sunshine in her pockets, Butterfly has rainbows in her shoes, Butterfly has birdy friends in the sky above, and all the sunshine a little girl can use. ~ Her dad and I took turns rocking her at night. Hubby often sang to her too, in French, and that often did the trick.

If she wasn't in reaction, she'd go to sleep fairly quickly, like any tired kid would. But if she was in reaction, we could rock her for hours, spelling each other off. And when she finally did sleep, she would be up again in 20 minutes.. like clockwork. At first we thought she was just waking up again. But so often she'd get up on the wrong side of the bed and bump into the wall. Her eyes were open, but glassy. And she didn't seem to want anything, like a glass of water or a trip to the bathroom. After a while of this, we realized she wasn't actually awake. Our daughter was a sleep-walker ~ at least, when she was in reaction she was. So we just rocked her some more, then put her back to bed. Just another bit of craziness in our already crazy lives.

Once again, the only thing to do about it was to keep her out of reaction. The thing is, experimenting with food means experimenting... and not necessarily being in control of the outcome. It was my mom who found spelt flour and brought it to us, and it turned out that Butterfly could have it with no ill effect. Yes! An experiment with a happy ending! I learned to bake with spelt, making yeast bread, quick bread, muffins, crackers and more. Oh, it wasn't as simple as writing about it is. Spelt is tricky. But after awhile, even cakes and cookies were possible. I had been using rice cakes and crackers, which I didn't abandon, but the spelt gave us more to work with, including a new kind of pasta.

Often we would eliminate one culprit from her diet and see improvement, only to realize there was still something getting to her. Using the reference material we'd gotten hold of, including Feingold's books, we took all artificial colourings, then flavourings out of her diet. Since all this happened, I've figured out that kids probably shouldn't consume anything containing propylene glycol. This is found in most colourings and flavourings, as well as many other foods, and is used as a stabilizer in medications, including Ritalyn. In my humble opinion, it is the propylene glycol that's responsible for most of the side effects attributed to Ritalyn. But I'm not a doctor. I'm not a scientist. I'm a mom. Read into that what you will.

Armed with our arsenal of resources, spelt flour, determination, patience and love, we kept struggling to get it right and give our little girl a healthy life.

Pictures above: dress up time; that window that fogs up and Butterfly's duck duck goose.

Some History

Hubby and I had survived what was, for us, a pretty devastating recession in the 90s. We'd both lost our jobs within two weeks of each other through no fault of our own. The businesses we worked for went out of business due the economic downturn. We struggled on as best we could, but wound up losing our house and a baby in the same month. But we kept going, because that's just what you do when things get tough. Mom was a big help and kept the encouragement coming. And Hubby was determined to do whatever he needed to. I had a bunch of collectibles I was content to let go, and Hubby was good at finding treasures at lawn sales, so we ran a little collectibles shop for awhile. He also refinished old furniture that others had discarded. It was an encouraging start, despite the recession. But the landlord needed more cash flow I guess, so after only a few months he hiked the rent, before we'd had a chance to get the thing really going. We were running our little business on a shoe string, so it was enough to shut us down. Afterall, we had to eat. When we left there, I was pregnant with Butterfly.

After we moved, I took a contract office management job to keep us going and worked until one day, in my eighth month, I couldn't focus on the page in front of me. I called the OB, who then put me in the hospital. After Butterfly was born, I looked after my family, and Hubby went back to college to take upgrading courses to improve his chances of finding permanent employment.

There were other challenges during this time, but they weren't all that important to Butterfly's story except to say that when she was two, she suffered separation anxiety when I also took an upgrading course and attempted to work another contract job. There were a few reasons why that didn't work out; Butterfly was one of them. My working was better for our finances, but it soon became clear that caring for Butterfly was going to be my full-time job for awhile. I was still trying to figure out her needs and it was important to focus on that. Other care-givers did their best, but it was a hassle for them to have to prepare different foods for her and there was often cross-contamination. Butterfly was spending too much time in reaction and ill. Moreover, her problems weren't being properly explored and identified. I was simply needed at home.


And so there we were, Butterfly and I, in a little rented house nearer the college than the little apartment with the latticed balcony, experimenting with foods and learning together. The challenges had just begun. I checked the ingredients on all foods to make sure there was no wheat in them, but it turned out there were other things that Bud reacted to. I called them "reactions" because of the Jekyl and Hyde effect ingesting certain things had on her. Her behaviour could change so rapidly, and so drastically, when she ate certain things... like red things. Red things were the worst. They made her violent.

One time she was on our bed which was on a cast iron bedstead, and she threw herself backward, without looking and with great force, missing the bedstead by scarcely an inch with her head. She got up and was about to do it again. I have never been so scared, before or since. I couldn't reach her to grab her. It was one of the few times I smacked her, but I dived for her and reached her bottom with one hand. She was wearing a diaper, but it was enough to get her attention. Her hands flew to her bottom and she moved closer as she cried out her indignation. I grabbed her and held on. Safe. She hadn't brained herself. Safe.

Another time she actually tried to push me down a flight of stairs. Fortunately I wasn't all that easy to push, especially for a little kid. I put my hand up to the wall to steady myself, then turned and told her to go first, in a tone and with a look that told her she just better. She passed me on the stairs with huge eyes. But I said nothing more. What was there to say or do, aside from keeping her out of reaction? Again, there was no shortage of opinions about disciplining Butterfly. I did, of course, for the usual kid mischief, when she wasn't in reaction. Time outs didn't work for her ~ she simply couldn't sit still for even two minutes. But denying her treats as a punishment made an impact, so that's the way I went.

But when she was in reaction, something had hold of her brain, so what good was punishment supposed to do, except perhaps send a situation spiralling out of control? It seemed to me it would be like punishing a kid for getting the flu and expecting that to make them better. You cannot discipline a child out of reacting to a substance that for them is a toxin. You have to identify and remove the toxin.

So after these episodes, obviously, no more red candy. I went again to the allergist I'd conferred with about Butterfly's wheat allergy. He at least understood my Jekyl and Hyde problem with her, which in itself was a huge help. Having opinions and platitudes flying at me from all directions from the well-meaning but unknowing was just an added burden to an already perplexing situation. The allergist encouraged me to trust my own instincts and gave me a list of resources he thought would genuinely help us out. And they did. One of the most useful books I got hold of was Feingold's Diet and The Feingold Cookbook. These provided anecdotal stories I could relate to, a list of foods to be avoided with kids like mine, and recipes. These books were of tremendous value to all of us, especially when I was able to get hold of a used copy of the cookbook I could afford. It was this book that got me past even more spectacular failures in the kitchen, to a place where I could feed my child without making her ill or violent. And so we all struggled to find a diet and a balance that worked.