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.

Tuesday, December 7, 2010

Respect: Rising to the Challenge

There’s dissention in the autism ranks. This could probably be said of any "group" of people, because there's always some people who think their challenges are just naturally more profound than the next person’s. Humans seem to have this bizarre need to categorize things and find the "typical" experience. But there is none. This can only be said so many ways: no two kids are alike; no two parents are the same. If you can't use the experiences of others, at least don't belittle them, because we have all had to deal with the shit life sometimes throws at us in our own way.

There’s a saying: “God never gives us more challenges than we can handle” or something like that. I think it’s crap. Some of us are indeed faced with more than we can reasonably handle and trying to overcome some challenges leaves us bent, ragged and broken, not exactly better for our struggles. But what can we do? Sure, we have free will, but there are only so many choices. We can opt out of any given situation, but if we abandon the people we love, how do we love, or even live with, ourselves? If we try our best, but fail, how do we cope with the guilt? If we don’t have the stuff to even really try, how do we deal with the shame?

Some people get really ticked off with me because of my incessant cheerfulness. I remember watching an interview once with a comedian who was often the very life of the party, but confessed that afterwards he went home and collapsed into a fetal position on his bed where he might remain for days, shut down by his crippling depression. I could relate. I am not lifted up on the gossamer wings of some magical griffin to be waving at others from aloft. I have dragged. myself. up. from. the. black. abyss. of. my. despair. by. my. own. sheer. stubborness. I have done it, time and time again. And not just because of raising an Aspie. I did it because somebody needed me. Whether my child, my aging mom, or others in my life, somebody needed me to keep trying. So I did.

Are there others with more profound challenges than I’ve had to face? No doubt. But what is, is, and I can only bumble along my own path and live my own tattered life. I’m not afraid of death either. Heh. I’m only afraid of hurting someone, by leaving before they’re done needing me. And so I do my best to stay as healthy as I can and be there for them. And yes, it has occurred to me that maybe, just maybe, if I’m not here to help so damned much, the people I love will get stronger. sooner. faster. better. But I don’t know that. So yes, I struggle onward, doing my best, and I do it as cheerfully as I can. If that pisses some people off, oh well.
It’s about respect. Are people struggling with kids at the profound end of the spectrum somehow more worthy of attention than parents of Aspies? C'mon. That's like saying it's ok that Joe and his family lost their home because they're still better off than that starving AIDS orphan in Africa. Neither is ok. It isn't a contest. Both need our compassion. Behaving as if it's some sort of competition only cheapens all our struggles. There is something about raising a child anywhere on the autism spectrum, or with other health or developmental challenges, that can bring any reasonable adult to their knees.

Even though we are journeying together, doesn't mean we are on the same journey.

We all just need a little more respect for each other. We just really do.

The challenges others face and the choices they make are their own. Some people really seem to WANT to be victims. Others can’t help feeling sorry for themselves. That doesn’t make it ok for the rest of us to judge them. We don’t know what else they’ve been through. What is, is. Writing about just some of my challenges has been a great catharsis for me. It brought my daughter (who has been reading along) and I closer together in our purpose and resolve. Once again, I do hope there’s something here that will somehow help others. Regardless, I will march on, and I will be just as cheerful as I can about it.

Sunday, October 31, 2010

The Wiener Incident

Ok, I’ve given this blog post an amusing title, but that’s because humour is one of the coping mechanisms I use to face the challenges of life with an Aspie. It’s also an expression of my relief at so easily determining the cause of the problem and dealing with it. But as mentioned in a previous post, our challenges are far from over.

Here’s what happened, starting with the qualifying preamble: we’re on a pure food kick at our house. This isn’t new, but it’s been an ongoing on-again/off-again thing. I raised my Aspie on pure foods because I’m a firm believer in the concept that we are what we eat. Even though my doctor was dismissive about the possibility that there are toxins in foods made for longer shelf life more than for nutrition and these can do damage to a growing child. If you read this blog in its entirety you will see that I explored this matter in depth over the years and took the advice of an allergist who told me to “trust my own instincts.” One other alternative medical practitioner referred to my daughter’s reactions to some foods as “brain allergies.” That’s a good description. We all have this blood brain barrier protecting our brain from toxins in the environment, including those that may invade our food sources. Any of us can get sick if we ingest obvious toxins, such as botulism, e-coli, etc., but our brains continue to function, even if only in survival mode, because of this blood brain barrier.

Butterfly’s blood brain barrier doesn’t work right. It was damaged somehow. I suspect toxins in vaccines, but it’s actually hard to say if it’s the cause of the breach, or just the first toxin to make an obvious difference. Point being, for Butterfly, vaccines are toxic. So are a plethora of preservatives, flavour enhancers and stabilizers found in so many foods. This includes corn syrup solids, MSG, propylene glycol, and when she was little BHA and BHT and of course, more. (Check out the Resource page on this blog for resources on food additives.) Solution? Don’t feed her foods with those things in them. And so Butterfly grew up on naturally fed and grown beef and other meats and foods that were organically or naturally grown. She developed normally ~ no 8 or 9 year old menses here.

Still, there came some times when Butterfly wanted to eat the foods other kids were eating. Even though she wasn’t in school, she was still with other kids enough to know what kind of stuff they were getting and these things seemed tempting. She wanted “treats” like hot dogs. We live in an area with both a large German and a large French heritage population. Different cultures bless us with different foods. There is this German sausage deli nearby that uses only Ontario pork in the making of its sausages and franks. When she was young, Bud was able to have those wieners without having a reaction, even though ordinary ones were off-limits. So she got her wish, even though for the first while, buns were out of the question. Ever heard of piggies-in-a-blanket? I learned how to make wheat-free crepes for this.

Since then she has grown out of some of her sensitivities. Once the kids bulk up a bit and start putting on those growth spurts that have them standing over you, their immune systems are a bit tougher. Even if she did react to something, those reactions that took four days to clear up when she was little were now pretty much under control in only two. Longer story shorter, Bud was able to “graduate” to a couple of brands of ordinary grocery store wieners and buns and even some lunch meats without any notable reaction.

But segue to the present: Hubby and I watched Food Inc. If you haven’t seen this video, you should. Do you believe that there are no hormones in that chicken? Heh. Don’t. Butterfly didn’t watch it, only heard about it from us. But some of her favourite bands are straight-edge, vegan types and with all the hype, such as Jamie Oliver’s Food Revolution, etc. added on, she has decided to revert to that pure food diet on which she was raised. She will simply not eat any foods produced in a corporate factory farm setting. This includes fast food. The switch from being bugged for a fast food burger while out, to her refusal to support that industry, was both sudden and welcome. So we have once again gotten to know our local purveyors of naturally grown foods, including local farmers of eggs, elk, beef, organic vegetables, and more. This also meant giving up the Butterball wieners I eventually got them on, because at least turkey wienies have less fat than those other ones. We went back to the sausage deli and bought some of those wieners locally made from Ontario pork.

So there she was, standing in front of me screaming her rage at me. THE WORLD IS GOING TO HELL! IT’S GOING TO END! PEOPLE ARE STUPID! NOBODY CARES! IF YOU DON’T SHUT UP I'M GOING TO WHACK YOU!

Huh? Who is this demon?! This is not my daughter! What’s going on??!!

It happened twice... maybe three times but the first time wasn’t as noticeable or violent. This is the accumulation affect. Something was in her that shouldn’t be. On checking the wiener label, there was a long name I couldn’t pronounce... something new... a preservative of some kind no doubt, that we had never heard of. Short answer: no more "pure" pork wieners.

In a couple of days Butterfly was back to her normal self. She doesn’t really remember what happened except the feeling of all this horrible rage bubbling to the surface. I won’t say the angst is gone now, only that it’s safely parked in that corner of her mind that we all have in our own minds for keeping our angst and fears.

I only just learned how to use some other features of Twitter. I’ve been going along these many months, slowly trying one thing and another to see what all is there. It’s kind of like this computer... there are probably dozens of things it will do, but I use it for only two. Anyway, I just discovered that you can see old retweets. It was sort of a disappointing discovery because while I spend much of my twitter time retweeting other peoples’ tweets that I think are informative, inspiring or somehow worthy, I see that others haven’t been doing the same for me. I’ve been putting up the URL for this blog hoping that others would RT it, so that other parents of Aspie kids at least, can maybe benefit from our experiences. I mean, I'm not alone and there are those with far more profound experiences than us writing about them. But hey, maybe there’s something here that their doctor has dismissed, or maybe something they don’t know about, such as what propylene glycol, found in most versions of Ritalin, can do to their child. Or maybe something else about this blog will give them an idea of something to at least try in dealing with their challenges. Alas, I guess it’s like what I’ve always said of experience: you can teach people how to spell it, but they have to learn what it is for themselves. It’s a little frustrating to not be able to help, but....

Thing is, it wouldn’t matter, except I saw this tweet about a dad who’s in a really bad place with his son’s autism. I feel bad for the guy, for obvious reasons, and also because I doubt he's alone. I don’t know all the details of his particular story. I don’t know what his son has been eating, what he’s been given for drugs. I do know his burdens are great. Wish I could help, but all I have to give is Butterfly’s story. This includes the image of her rage; of her in my face, screaming her angst at me, at the world. And then the realization that this was chemically induced by something meant to make those “pure” wieners last longer. All I have is memories of what the drugs we tried did to her.. how they made things worse. And then her beautiful face, close to mine because of a hug. The rage gone. The angst put back in its place; her voice saying, “good night, Mom. I love you.”

Our humble home.
We live in a tiny cottage. We live pretty much on one income. We are in debt. There’s a lot of things people around us virtually worship that we will never have... no HD tv, no late model car, no fancy washer and no dryer at all. And busy? Got another book out of the library that I won’t get around to reading. One reason I'm so busy is that I don't just stick heat n' serve dinners into the microwave. I cook. I have to. Not just for Bud, but for my health problems. Thing is, all and all, Butterfly is who she is, and as I’ve already said, Asperger's is something that’s happening to her, not something she’s doing to us. She is my masterpiece and I have given up nothing truly important for her, because none of those other things are worth anywhere near as much as, “I love you” coming from her lips. It’s what I’ve got. If this isn’t worthy enough to the bigger world, oh well. I feel blessed.

Monday, August 16, 2010

So Then, Here We Are..

Of course, this isn’t all of Butterfly’s story, but I’ve tried to hit the highlights of her young life, including examples of what kids like her go through, some of the battles and triumphs we’ve experienced together, and the issues that might be helpful to others. And so I come to my final post for awhile I think, although I will continue to add resources, photos, and the occasional page, and perhaps even a post or two if something noteworthy happens. So obviously I can’t exactly write “The End” on this story, because it just isn’t. (At least, I hope not.) While this post will bring us up to present day, Butterfly still has many challenges ahead. From what we’ve experienced just recently, clearly the gates of the world are not going to just swing open and welcome her. There are still struggles to deal with, some hurdles for her to find her way over. Moreover, going through pictures, as I have been lately to organize them better, I just might remember something else that may be helpful or insightful to others raising an ADHD or Asperger’s child or kids with food intolerances or learning challenges, or to someone who wants to attempt homeschooling.

(For newbies, this is a sequential story of one child’s life, so please start at the beginning, which would be the bottom of the last page. I know. It’s a lot like reading a book from back to front. Technology. Is there a way to reverse it? Not technology ~ the blog. )

A few nights ago, Butterfly came into the living room to sit with us to watch a music program. She got up to go outside for a few minutes (to work out her hyperactivity) and Hubby, who’d been sitting beside her, sort of sagged into a relaxed lying down position across the couch. After awhile, Butterfly came back in and seeing her dad taking up pretty much the whole couch, shrieked at the top of her lungs that he was hogging her space. I looked at her and said, “why are you screeching?” She looked at me. I said, “just say, please move over Dad, I’m back.” She tried it, and of course, it worked. Now if you think that made an impact, it didn’t. Almost exactly the same thing happened again about an hour later.

Yes, we taught her manners. Moreover, Bud’s Nanna taught her too. (People were a little afraid of my mother and just naturally wanted to do as she said. I asked her how she managed this, but she just shrugged and said, “either you’ve got it, or you don’t.” Apparently I don’t. My family always took off their shoes when they entered my mother’s home. I can scarcely get them to wipe their feet.) Anyway, we even got video cassettes of that annoying purple dinosaur teaching manners to a gaggle of fresh-faced little kids who were already freakishly polite. Moreover, my daughter wants to please us and honestly does her best. But in that moment of stress, surprise, or when something runs counter to what she had in her mind, all that she has learned goes by the wayside. She reacts. She knows what she should do, if she only stopped to think about it. But Aspies don’t stop to think, they react. No, it isn’t a matter of behaviour and punishment, as people who tend to judge others like to believe.

Butterfly doesn’t like people. She often says so anyway. Over the years she’s experienced a variety of social situations with people, from the heartwarming smile of the older woman who received Butterfly’s name with joyful surprise, to the historic interpreter who gave Butterfly her cheerful attention, to the market customers who listened to what she had to say about my jam with smiles on their faces, there have been many positive experiences in her past. But what stands out far more for her are all those negative experiences: the aggressive people, or the disapproval of those who know nothing about Autism; the store clerk who carried on because Butterfly picked up an item from one shelf and put it down on another (geez, get a life lady); the presumptuous foolishness of the old woman who put Butterfly on the spot thinking she’d teach her to tell time on a clock face in five minutes; the ignorance of the nasty old man who glared at her in a threatening way, hollering that she needed to be whacked around; the teenage girls who laughed at her while she was trying to raise money for charity. It’s unfortunate, but it’s the nasty and ignorant amongst us who’ve influenced her view of humanity enough to make her shy away from human contact. This is because it has left fear in its wake. Oh, it brings a smile to her face to remember the nice people. But she just won’t take the chance if she can avoid people all together. Shame.

The unhappiest part of this is that she has actually learned some great social skills. Ok, she may never be the life of the party, and you don’t want to cross her, but while Aspies don’t “get” hinting around and can’t “read between the lines,” Butterfly has learned sarcasm, for instance. And she has learned to not react instantly to teasing. Some of the sarcasm she’s embraced she learned from me. When she would say something outrageous, I would look at her and say, “yeah, and I’m Queen Elizabeth.” At first this confused her, but by the time she reached her teens, this was a favourite retort to anything I felt was unlikely, and she would respond with a deep bow, an elegant wave of her hand and, “your majesty.” One of her favourite t-shirts is the one that says, “Sarcasm, just another service I provide free of charge.”

The teasing was a little harder on her and was courtesy of her dad. Over the years, I’ve noticed that the only way a lot of people can communicate with children is to tease them. Butterfly’s dad is one of those. I well remember the time I went out shopping alone while Butterfly stayed home with her dad. When I got back she came running to the car before I even stopped it and demanded to know if her father had green blood. Whaaa? She looked positively tortured by this, so I answered her honestly, “no, of course not.” To which she turned enraged and started screaming at her dad, calling him a liar... and more.

Ok, thanks Dad. Here I am wanting the child to learn about her world, for one thing, and also trying to teach her that lying isn’t a good thing, and here’s the ol’ man teasing her that he has green blood, like a vulcan. Annoying? I finally had to lay down the law and get him to cut back on the teasing... as far as was possible for him. She was getting so she didn’t want to stay home with him and she was spending far too much time being angry about really stupid stuff. Teasing has it’s place sometimes, but it can be overdone for any child. An Aspie really doesn’t get it, so maybe keeping it to a minimum, at least until they’ve achieved teenhood, is probably a good idea. Once again, by the time Butterfly hit puberty, she would simply gaze at her father in disdain, rather than getting angry... unless she was in reaction. The thing to remember here is that social skills are very much learned skills for an Aspie ~ they do not come naturally. And they learn from what they experience. So what you do and the way you behave is even more of an influence on your Aspie child than on other kids.

Here is a description of ADHD (Attention Deficit Hyperactivity Disorder): ADHD is characterized by persistent patterns of inattention and/or impulsivity-hyperactivity that are much more extreme than is observed in individuals at the same developmental level or stage.

Asperger’s Syndrome:
"Asperger syndrome (also Asperger's syndrome, Asperger's disorder, Asperger's, AS, or AD) is one of several autism spectrum disorders (ASD) characterized by difficulties in social interaction and by restricted and stereotyped interests and activities."
Don’t believe in syndromes? Well good for you. Stick to your guns. But for those of you who want to deal in reality, Asperger’s is on the autism spectrum, at the high functioning end. Aspies are not mentally retarded nor intellectually challenged; they have a hard time to manage or express emotions and social skills do not come naturally. They routinely have meltdowns when things don’t go as they’d planned in their minds (in order to cope with the world). No, they are not brats. They are frightened and confused when this happens, because when you take away what they thought would happen, or they are subjected to sensory overload, they are lost and often don’t know how to deal with it. It’s the way their brain works... or perhaps doesn’t work, that causes this behaviour. And no, you do not fix a brain malfunction with aggression or violence, although a mild shock is sometimes necessary in certain situations.

This brings us to picking your battles. If your Aspie honestly cannot cope with cleaning his or her room, nagging endlessly is only going to add oodles of unnecessary stress to both your lives and make the very issue of tidiness not only unbearable, but an instant trigger to meltdown. Back off and take it down to a few small victories, like getting your Aspie daughter, for instance, to return the things she uses ~ scissors, tape, pens, pencil, calculators, etc. Get her to bring the recycling and dishes out of her room at least. If you can deal with a few of these smaller issues on a day to day basis, it’s at least going to help with the larger concern, even if you still have to go in there to pick up the laundry and even if 647 socks somehow disappeared into the dark shadows of that room. Choose your battles wisely and with care. They have to be something that’s winnable, or can at least be taken somewhere in incremental steps. Constantly being at your child to perform in ways that aren’t possible will only increase your level of stress and destroy her self esteem. Ask yourself what’s more important.

On the subject of priorities, one time we invited one of Butterfly’s friends to a social event. She had really wanted this friend to be there with her, so even though we had to change the original plans to accommodate one more, we did so. Her friend had accepted our invitation, but when we went to her house to pick her up, we were told she couldn’t come after all, because she hadn’t finished cleaning up her room. It was a mystifying decision. Yes, discipline is important and we all parent in our own way, but why not choose a punishment that doesn’t impact on other people and their plans? To me, it’s a matter of consideration for others and of priorities. Butterfly’s room may not be neat, but I will be immensely proud of her if she turns out to be the kind of person her friends can count on to be where she said she’d be, when she said she’d be there. Priorities. And no, Butterfly did not have a meltdown at the change in plans. She was upset, but she kept her composure.
With that in mind, I want to end this post on a positive note and reassure parents of younger kids with Asperger’s that things can get better with maturity. Butterfly no longer panics in stores when they are out of something she wanted. She no longer stomps toward me at a run with her mad face on, shrieking the whole way. Instead, she gets annoyed that they’re so often out of the very things we want, and if it’s something she had big plans for, she’ll ask if we can look at another store for it. Much, much better. While she still reacts to situations and shrieks more than anyone should, she can and does fall back and regroup when dealt with calmly. She is learning to cope with change better and keep her temper in check when things don’t go well.... well, sometimes anyway. As I said at the beginning of this post, there are still challenges and hurdles to overcome, but we will all work on them together, at least until Butterfly is ready to spread her wings and fly out into the world.

Friday, August 13, 2010

The Education Hurdle

First of all, I want to say that I really enjoyed educating my child. I’m the first one to recognize that homeschooling is not for everyone, but I might have done this, special needs or no. I had wanted to be a teacher when I was younger, and though that didn’t happen, I still worked in the fields of communication and post-secondary education in the city, before I moved up here, geared down, met a young man, and became a mom. (Seems like a whole ‘nother lifetime now.) I had been reading about homeschooling before Butterfly was even born.

When you take this on, it isn’t just the child who learns. I participated in a homeschooling forum for awhile to share with other moms, some of whom were raising special needs kids too. This brought a support network into my home. One mom who visited declared that she would never homeschool because she wouldn’t want to restrict her child to her own store of knowledge. Um... well, you don’t have to do that. There are a great many resources available to the homeschooler. I mean, just the fact that history changes was the subject of one day’s lesson for Butterfly. When I went to school, an historical figure named Louis Riel was considered a madman and a traitor who deserved to hang. Today he is a hero to the Metis people and a father of Canadian Confederation. Just depends on whose version of history you’re studying. Even the official texts had changed on this one.

So as I sought out resources for Butterfly, I wound up learning a lot myself. Not just about school subjects either, but about acceptance, patience, and people. When I first realized the extent of Butterfly’s challenges, my first thought was to find ways to “fix” her. And I encountered others, including those in the medical community, who took this approach. But as I discovered the subtle, yet often profound beauty of Butterfly’s way of seeing the world, I had a decision to make. I could try to change her, or I could change myself. I opted for the latter, discarding my organized and neatly defined world to fly with my daughter, up, up, into the sky, all around the house, over the trees... we flew. In our minds, we could see a long, long way. And so instead of trying to restrict her view to what she was supposed to see, I encouraged her take flight and explore the world her own way, through her own eyes. I became very much the follower, every bit as much as the leader.
The Terry Fox Run

Yes, she still had to learn the basics of our subjects of study, but we had a whole community of classrooms, the great outdoors, and two minds to imagine with to accomplish this. No child is going to learn something that is not made to seem interesting, and there is no rule anywhere that says learning cannot be fun. And so we used art, music, haiku, stories both existing and made up, nature, crafts and more to facilitate learning. From those grackles she watched from her Nanna’s deck, to nature trails, to discussions around the fire, to First Light at the local historical site, and then outside our little world to earthquakes, hurricanes, tsunamis, volcanoes, to trips, to community events such as the Terry Fox run, to our foster child ~ a little girl about Butterfly’s age in Zimbabwe* ~ and so much more. We found ways to put the world into some sort of focus so that Butterfly could, in some small way, experience it.

And at play time she did her own thing too... like building vending machines out of cardboard boxes, and throughout her childhood, there was her persistent conviction that anything could be secured or fixed with enough Scotch tape. (I’m certain we are personally responsible for a good deal of their profit during Butterfly’s childhood years.) Obviously I could go on and on, but I’ll be merciful. Overall, Butterfly progressed through childhood into someone whose view of the world is an educated, intelligent one, despite her youthful innocence.

Is this what our education system wants? I don't know. Our education system hasn’t changed much since mass education was first conceived. It took children out of the factories of the industrial age and set an education standard that prepared them for the same work in adolescence, hence protecting little kids from becoming part of the labour force. While the system purports to have changed its standards over the years, it’s basic goals and methods have not substantially changed. Every child is given the same, exact primary and much of their secondary education, just as if every child was exactly the same, with the same aptitudes, interests and indeed, the exact same brain. Now don’t get me wrong... it is a massive undertaking to gather up all the children and try to give them all some basic education in an affordable manner. And no, I don’t have a better plan for all these children, and I’m sure there are better minds than mine working at it. (When Butterfly was of school age, there were no teacher aids following kids around, for instance.) I just had a better plan for us. Again, it's not for everyone, but I could foresee that trying to force Butterfly to conform to the system might be every bit as problematic as taking matters into my own hands. And so I made my choice.

Butterfly’s next hurdle is that GED test. Now, to get her ready for this, I thought perhaps the education system might finally be useful, but plainly I’d lost my mind or something. They gave her an assessment test, on which she apparently did well. But they said her math and grammar were weak. No surprise there. I enrolled her in a GED prep course to deal with this, and what did they do? Told that she had dysgraphia and dyscalculia, they responded by sticking a large book of small print, dry arithmetic problems in front of her and told her to do them. Well Jumpin’ Freakin’ Jehosiphat, if she could do that, there wouldn’t be a problem, would there? This was the best they had? They hired an instructor to put a newsprint book of problems under her nose? Golly! My tax dollars at work!

Moreover, when I tried to discuss this with one of the women in charge of this course, she informed me that she could not discuss my daughter’s needs with me, because Butterfly was now 18 and of age. Now, that would be fine if they’d communicated adequately with Butterfly. But a book of math problems was all she got. So she wound up confused and mystified by the whole, detached and simple-minded approach to the thing. She didn’t want to go back, but she didn’t want to be a quitter either. She agonized for days over this. I told her there were other routes we could take. Our school system just wasn’t going to be helpful to her. The experience only made me feel very glad that I hadn’t ever put her in school. She had come close one year. In fact, I almost had my hand on the phone to start that ball rolling. But one weekend, the girl next door told Butterfly some horror stories about school, teachers, homework, etc. Butterfly very simply changed her mind about trying school. I’m so glad now that she did.

And so we went to the library to see what they had, and after flipping through a few books we had a better idea what was available to help us. Butterfly picked out a GED study guide on one of her shopping trips that she thought she could work with. We have been studying together, like always, to get her ready for that test. Yes, I will help her find ways to do those tricky math problems. I will use this thing called imagination. Mostly I will try to help her build confidence, so important for success.
Butterfly loves music. She also loves computers. The collection of music on her laptop is a little astounding. Her in-depth study of song lyrics, artists, genres and more is impressive. We have always been a household of music and Butterfly learned a lot of the music from our day, just as we’ve enjoyed her favourite artists. She has chosen a college that offers a course in music technology and is hoping for a career in music production. So we have some work to do and a definite goal in mind. And so our learning continues.

* Foster child through Plan Canada, part of Plan International

Wednesday, August 11, 2010

Markets, Drugs and a Milestone

Another Market

Yep, someone fresh in town decided it needed a summer market and the town agreed, this time supporting the plan by fast-tracking the permits required. The young woman organizing it had a business plan and a set of standards for this market. Which is to say that it was specifically for people selling organic, fair trade and hand-made goods. This new market was to be held down by the docks and the interest was a little astounding to me, but not one to look at something that seemed promising askance, I signed on. Gathering up my rustic boxes and preserve recipes, I prepared for another busy summer. Butterfly was to have her own table this time, with framed photographs we’d all taken and she’d helped choose, print and frame, as well as my quilling art, dragon bags, and more. Butterfly’s Images we called it, and her friends also asked if they could help, so it was shaping up to be an interesting summer.

The biggest stumbling block was Butterfly’s sleep disorder. She had, of course, always had trouble sleeping, but as she grew farther into adolescence, her hours were becoming increasingly unrealistic. Getting up Saturday mornings for market was going to be difficult to say the least.

Ritalin and Sleep Disorders

As I mentioned earlier, when Butterfly was younger I decided against Ritalin. Both the psychologist and the conferring psychiatrist supported my decision, agreeing that these drugs are often used to regulate a child to fit the needs of the school system. Since I was homeschooling Butterfly, there was no need for this regulation. It was perfectly all right with me if she got up a little later in the day. There was no school bus to run for, so no reason to drag my child kicking and screaming out of bed early. This gave me the glorious luxury of doing up the dishes that were always in the sink, and enjoying a coffee and some breakfast before the sometimes jarring entrance of my hungry, often grumpy child.

The psychiatrist did recommend that when Butterfly needed to pay particular attention to a lesson, like when we were doing math or grammar, getting a little caffeine into her wouldn’t be a bad thing. With this in mind, Butterfly was allowed to have coffee as a youngster. In fact, we made a brief study of where coffee is grown and the concept of fair trade. Of course, just allowing her to have ordinary soft drinks would have done the trick too, but for awhile there, she was off sugar, so we weren’t really used to those. But of course, when Butterfly was allowed to have sugar again, she gradually became accustomed to some soft drinks, starting with the occasional Coke, then Mountain Dew, etc. All the better to learn punctuation with. So while many parents are worried about their “normal” kids ingesting too much caffeine, it was never a particular concern at our house as long as it wasn't ingested before bed.

Problem was though, once those pesky circadian rhythms kicked in, her sleep patterns became increasingly bizarre. At one point she was pretty much living the life of a vampire, and that really didn’t work. It was just too difficult to get her up at a reasonable time of day. Sleeping in? Fine. Sleeping all day? Not fine. So, having switched Butterfly from her doctor back to mine, we approached the issue of Ritalin again. The size and age she now was and knowing about propylene glycol and that it’s actually responsible for a lot of the side effects attributed to Ritalin, we decided that trying a non-glycol version of this drug might be helpful in regulating her sleep patterns.

I think it did help a bit, but not so as to impress. Butterfly took this for about year and her hours did normalize a bit. For sure, if I forgot to give her a pill in the morning, she would be terribly sleepy all day. But after about a year of taking it, she decided she didn’t want it anymore. There were two reasons for that. One was that the drugstore, which used to be a small town business that knew its customers, was making it increasingly difficult to get Bud’s prescription. Whenever we brought in a new script, they would disregard what was left on the old one, and this was not what the doctor intended. He kept records, they kept records, they were not in sync, so sometimes I’d call for a refill, only to be told there were none coming to us. And if I was told once, I was told 50 times that this is a controlled substance. No kidding. I mean, yeah, I’m really stupid and didn’t know amphetamines have a street value, and that’s right, now that I know, I’m liable to run right down to the school yard with Butterfly’s pills to make a few bucks. {/sarcasm} So much for small town charm.

The second reason was that Butterfly was feeling depressed and depression is listed as another possible side effect of this drug. So she decided to just skip it. We’ve been winging it ever since, as far as her hours go, and yeah, she most definitely has sleep and anxiety disorders. We are hoping to get some tests in the next month or so to try to figure out what to do next. But it’s difficult. Again, it’s not something she’s doing to anyone... not even herself. It’s something that's happening to her. So our search for something that will help continues.

The market? We did well. A little too well. I spent the summer doing nothing but making more preserves. Thing is, I’d had hopes of accomplishing a few other things as well. But at least I met some like-minded people. Money? Basically I spent the summer doing a lot of hard work for very, very little. Value added? I just don’t know. As far as Butterfly is concerned, she was a reluctant helper at best. Getting up for Market was entirely too early for her and she spent most of the time whining around, which was just a misery for both of us. I wound up doing much of the work for both tables, which was a little demanding. The experience was at least supposed to be educational for Butterfly, but I think she really only learned that she still doesn’t like getting up in the morning.

All things considered, we didn’t do the market this summer. We just go every week (later in the day) as customers to get those fresh vegetables, smoked fish, elk pepperettes, fair trade coffee, humus dip (from the guy whose recipe I use), breads for Butterfly and more. The fresh, high quality foods are good for the family, and I like to support the community market. This keeps some of the hard earned money of this community circulating within the community, which is better for all of us.

An Important Milestone

Butterfly got her learner’s permit a little over a year ago. She has some anxiety when writing tests, so it took her two tries, the same day, to get it. She knew the work, she just still panics when that piece of paper is set in front of her with ALL those questions on it. We talked and went over the handbook again. Then she wrote it a second time and passed. We enrolled her in the Young Driver’s course and she did quite well, passing that handily. I sent her to test for her G2 licence with her YD instructor because she is nervous driving with me in the car. I’m mom. I speak up when she does something wrong. She doesn’t care as much if it’s someone else remarking on her driving skills. So off she went with the instructor, and came home with her licence. It’s actually pretty cool letting her go do the shopping while I stay here and and get some things done, like writing a blog, while she exercises her independence. So far, so good. But more hurdles to come, both in terms of health, and learning.

Tuesday, August 10, 2010

More Travel

We didn’t move back to our house right away after Mom passed. Our home was suffering from neglect and needed work, and I had a lot of things to go through at Mom’s anyway. So we stayed there while we fixed up the bathroom, did the living room floor and a few other fix-ups at home. When we did move back to our place, Butterfly and I still spent a lot of time at Mom’s house. There was a lot to go through and I had promised Mom I wouldn’t just do the dumpster thing. Mom had lived through the depression, so she just never threw anything out. Her house was always neat and tidy, but she had stuff stashed in every nook and cranny. And as summer approached, Butterfly was getting to see more and more of her friends nearby. In fact, I liked it when they were hanging around because they didn’t mind helping me move things.

We were going to put Mom’s house on the market. She had wanted us to live there, but there was no sun getting through the trees on the property, and it would have taken a lot of work to make it right for a garden, and when I checked with the family, they just wanted to come home anyway. And the cats ~ they were thrilled to be back home. They quite obviously remembered and fell immediately into old habits here. And the dog ~ he developed an emotional problem, suddenly forgetting his training at regular intervals and peeing inside, both there and here. And every time we pulled into Mom’s driveway, he’d bark and be quite agitated. I think he missed Mom. There is no way to explain death to a dog, and I think this little guy was just plain upset because she was never there.

Or was she? Now, you may think I’m nuts, but this really happened, to all of us: when we were done going through things at Mom’s for the day, we would turn out all the lights. But every time we went back, the light on the bedside table in Mom’s room was on. Now, it was a touch lamp, so it sometimes turned itself on during electrical storms and such. But there hadn’t been any storms, and every time we entered the house, that light was on. One time, Butterfly and a friend used Mom’s house to change into their bathing suits. They made sure all the lights were out when they left to go for a dip in the lake. When they came back to change again, the light in Mom’s room was on. It was very strange, but oddly comforting.

There was a family wedding coming up in early October in Calgary, and I had said to the realtor that the last thing we needed was for Mom’s house to sell and the buyer wanting to close at the end of September. Guess what happened. So then we were going nuts trying to get everything either packed up or dealt with. But with the help of friends, we managed to get the house emptied out on time, or at least, only left a day late for Calgary. I was taking Mom’s set of English bone china to my niece as a wedding present from her Nanna (at Mom’s request), so we were driving out. I mean, this was an old fashioned service for eight, with the candy dishes, teapot and the whole nine yards. I wanted it to get there safely. Funny thing though ~ one of the last things I did before moving the furniture out, was pack up the contents of Mom’s bedside table. The light had been on when I came into the room, like always. I left it on so I could see what I was doing as I packed up her things. When the bedside table was empty, the light turned itself off, even as I stood there, a couple of feet away.

Just before we were through at Mom’s, Butterfly got her first job. You know, I had told her when she was younger that gambling was a bad idea... a way to waste her money. To prove my point, I bought her a 50 cent Nevada ticket, with which she promptly won a dollar. Right. So that didn’t really work, did it? I had been telling her that she’d soon be needing to get a first job to get some experience for her resume other than just doing the market with me. I told her all about how a job wasn’t just going to walk up to her and introduce itself. So there we were at the community mail boxes picking up the stragglers of Mom’s mail, and this woman who lived nearby asked me if I knew anyone who could dog sit for her. I said, “yes, my daughter would probably like to do that,” and I pointed to our car where Butterfly was sitting. And behold, Butterfly’s first job walked right up to her and introduced itself. *sigh* So before we left on our trip, Butterfly looked after this dog each noon hour for a couple days a week, taking him for a walk, feeding and rewarding him, and putting him back in their cellar till they got home from work. One or the other of the dog’s owners were usually at home, but one or two days a week they couldn’t wangle that, so they needed Bud. She made $15. a visit, and soon started her own bank account. And I just stopped telling her what was what with the world, because that just wasn’t working out.

So we were off to Calgary for a wedding. It was also time for some more schooling for my girl, but as I’ve said before, nothing is more educational than travel. The rugged north shore of Lake Superior is, by itself, an education, especially if you leave Sault Ste. Marie with only half a tank of gas. We simply didn’t know that there was NOTHING until we got to Thunder Bay, not even one little rest stop or gas station. The idiot light on the dash came on well before our destination, and we all wondered, with the cheerfulness of the doomed, where we’d be when we had to try to call CAA on our cell phones. Fortunately our car apparently goes a long way after the idiot light comes on, because just when we were sure we’d run out of luck ~ and gas ~ we topped a hill, and at the bottom was ... YES! a gas station and restaurant. Breakfast and a fill up on the outskirts of Thunder Bay, and thank goodness for good mileage!

After that, our journey was pretty uneventful. At that time of year, Ontario is closed for business, the tourist information facilities all locked up for the season. Oh, we could get at washrooms, but a map was out of the question. But once we crossed into Manitoba, happily, everything was open. Not only that, but with each provincial border we crossed, the speed limit on the Trans Canada highway went up by 10 kms/hr. So we fairly flew across the prairies, which is just as well. Having left that day late, there would be no sight-seeing on the way there. We figured we’d be lucky to make it to the wedding. All sight-seeing would have to take place after the big event.

Still, there were firsts for Butterfly, what with having to make sure each motel took dogs at either no extra charge, or at least a reasonable fee. (Some chains are not reasonable in this regard.) She had her laptop along and suddenly she knew the speed and convenience of high-speed internet. (Yes, where we live, we are still in the dark ages of computing.) And then there was the fancy hotel at the end of the journey. We decided to stay where the wedding reception was being held. That way we could enjoy the celebration and only have to drive an elevator home. No... it wasn’t exactly the kind of place we could afford. We’re still paying for that. You know ~ literally.
After the wedding, Butterfly wanted to go to the West Edmonton Mall. Now, that probably doesn’t sound like much, but that place is one of those great, big malls with all kinds of extras, like pools with dolphins, a skating rink, swimming pools with five story water slides, etc. So we drove north to see that. Butterfly was a fiend for water slides at the time. It was difficult to drag her away, especially since the water slide at the hotel was only three stories. Then we drove west to see the mountains, which are only about a half hour away from Calgary. We had lunch in Banff and wandered around to take in the sights, including the museum/art gallery and gift shop. Then we went and saw Lake Louise. Typical tourists, we stopped at all the roadside lookouts to take pictures.

Then on the way back east we took in the dinosaur museum at Drumheller ~ Albertasaurus Rex in all its glory. Educational? My, yes. Fun too, although it was very, very windy. On the way east from there, we almost lost part of the underside of the car, but hubby tied it up off the road with the spare dog leash and we stopped in a small town where a nice man at a garage tied the aluminum heat shield properly with plastic ties. Then we were off again. Butterfly had never been to the United States, so we decided to take the southern shore of Lake Superior home. I am here to tell you for sure, that even though it’s not as rocky, hilly and winding as the north shore, it is no shorter. Moreover, the distance is measured in miles, which seem endless once you’re used to kilometres.

But we enjoyed it. Gorgeous public parks along the shore, bars in the middle of nowhere, a lovely hotel in Wisconsin where Hubby took some beautiful pictures of the sun rising over Lake Superior ~ it was great. Of course, what Butterfly remembers is the chicken wings. They were touted as being a bit hot. Her lips and tongue were days recovering. We crossed back into Canada at the Soo and headed for home, pretty much retracing our route to that point. All and all, it was good to get out into the world, and yes, it had been a good, fun, interesting and educational experience for Butterfly, and while it wasn’t completely without the drama that travelling with an Aspie can bring, it was much, much better than that trip out east.*
A neighbour and a friend had been looking after our cats for us. They were a little scandalized by our absence, but once again settled right back down to life as usual once we were home a few days. And so did we. It was a quiet (Butterfly would say “boring”) winter of lesson review, slow-speed internet, and just catching up again with life as usual, including the occasional teen Aspie drama that can only reasonably be expected. And Butterfly also resumed her job as dog sitter for the rest of the winter and spring.

* See Tips for Travelling......

Monday, August 9, 2010

Instincts and Trust

It has now been over two years since Butterfly’s Nanna passed. It has been a time for healing, at least to some degree. As I said in one of my comments, it was difficult to write that last post. There is still some anger lodged deep inside me about some of the things that happened. Yes, I know it won’t help anything, but I think it’s inevitable that we feel anger when someone we love is made to suffer unnecessarily because someone else is selfish or is bad at what they do. (Yes, I made a formal complaint to the hospital. No, to my knowledge, it didn’t do any good.) When we trust someone in any field of expertize to help us, we shouldn't have to second guess them.

My focus though has been on my child, so before I bring her story up to present day, I want to talk about some of the challenges that come with ADHD, Asperger’s Syndrome, food intolerances, and learning difficulties. I share some of the things I have learned in case there is something that will help other parents of challenged kids. At the same time, I recognize that no two kids are exactly alike, and I think the first thing that has to said, that the allergist I met early on told me, trust your own instincts.

You don’t have to have a special needs kid to sometimes be overwhelmed by well-meaning people offering advice. For me, there were people from the get-go who variously told me what to do, often in contradictory terms, or bragged about the progress of the babies in their families (with rather impossible claims, by the way), pushed me to get solid food into my child before her system was ready for it, pushed me to get this thing and that thing that was supposed to help with her development, etc. All I can say is that there were times when the claims and the pushing made me feel depressed, but there was no time when I felt compelled to push my child, or pay money for things designed to make my child walk, or do anything, before she was ready, or in any way make her “perform” to satisfy the opinions and competitiveness of others. I took the words of the allergist to heart and trusted my own instincts. And I have often been glad of it.

Sensory Overload
It can be difficult to explain to people what it’s like to raise a child like Butterfly, and all the little things that can impact on their senses and therefore on their behaviour. When we first moved to this little house, Hubby decided to build a play house for Butterfly. He put cedar shakes on it for the roof and sort of a board and batten siding. The framing and finishing of this wee house required a lot of hammering ~ something that didn’t go down well with Butterfly and her sensitive hearing. Hubby’s hammer suddenly disappeared. It just mysteriously wasn’t where he’d left it and no amount of searching in the area came up with it. He had to get another hammer.

A couple of weeks later, I was cleaning in our bedroom when I saw a little bundle of socks shoved into the space between a little chest I had in our closet, and the closet wall. I reached down and picked them up, wondering what the heck they were doing stuffed in there like that. And there... underneath the socks and hidden between chest and wall, was Hubby’s missing hammer. Yes, picture eyebrows raised. It seemed so ironic that Butterfly had taken his hammer and hidden it, when he was building that little play house for her. But when I held out the hammer with a questioning look, she just said, “it was too much noise, Mom. I don’t like hammering.”

Well yeah, sometimes we don’t have to go into town, into exuberant crowds, or into noisy stores to get that sensory overload thing goin’ on. Right here, with the radio playing rock music, Hubby hammering behind the house, the washer going, Hubby hollering at me to ask if there are any more nails, a dog barking down the road , and the lady across the street hollering for her grandkids, it can be something of a sensory overload for all of us right here. Not really all that surprising then that the child temporarily halted construction of her play house.

You can stare at us all you want and shake your little head about my misbehaving child, because all you can imagine is that she is an undisciplined brat. But you just don't have much of an imagination and you're wrong. I discipline my child when she is being bad and needs to learn a lesson. I do this when she is capable of grasping the lesson. But I do not discipline her when she is in reaction. Why? Because, as I’ve mentioned before, that would be roughly like punishing a child for having the flu and expecting that to make them well. There were times I had to smack her bottom to get her attention. But this wasn't really a punishment as much as a "hey... snap out of it." It sometimes worked. It saved her from serious injury a couple of times. But it was never done out of anger, only out of fear... fear for her safety mostly.

Other times, during tantrums for instance, I would ask her, "just what is it you're so angry about?" If it was a full blown meltdown, it was like talking to a brick. But if she was just mad about something and not handling it well (as is usual with Aspies), she would pause in her ire and think about it for long enough that I could also ask, "how can we fix it, whatever it is?" It was difficult for her to express herself, and I often didn't understand what she was trying to say, but if I hung with it and kept giving her my attention, we could sometimes get to where we could talk about it and find solutions. One thing I used to say, and that I’m sure she got tired of hearing it, was, “for every problem there’s a solution. Let’s try to find one.” I kept saying it because it takes a lot of repetition for an idea like this to sink into a mind that doesn’t do “calm” and doesn’t do “think first” and doesn’t know a good, healthy way to express emotion. Repetition helped to instill calm; helped to instill in Butterfly the knowledge that I am here and I will give her my attention when she needs it. It eventually gave us shortcuts to dealing with problems.

When she was around 7 and 8, she used to routinely run into the woods behind our house. At first I would follow her, worried that she might run all the way to the road, and in her emotional state might wind up getting hit by a car or something. But then I realized she was only wanting attention. Running away was just a way to get it. She would only go so far, then turn and look to see if I was following. I would see her pale face and dark eyes peering at me through the trees. She would only keep going if I went after her, so I didn’t. Instead, I waved and hollered out, “come back when you’re ready to talk.” Then I returned to the house. There was no reason for her to run if no one was chasing her. She waited for a bit, but no hyperactive child is going to stand around in the buggy woods for long, so after a bit, there she’d be on the deck. Getting her back into the house really didn’t work too well, so I’d go out, sit on the steps, and invite her to sit beside me. It took some coaxing, especially if she was in a temper, but eventually we’d sit side by side and talk about what she was upset about. Always I had to be calm. Even if something had happened that rocked me a bit, or really ticked me off, or upset me in any way, it would only upset Butterfly more if I showed it. The only thing that allowed communication to occur was calmness. Anything less wouldn’t do. It was simple: I had to control my own emotions before I could help her deal with hers.

Even today, if I get impatient with the fact that it sometimes takes her an hour and a half just to get ready to go out with me, and I start rushing her, it causes her so much stress that she winds up screaming at me. As much as I may want to push to hurry her up, there just isn’t much point. If I threaten to leave without her, she isn’t going to go faster, she’s only going to get mad. Of course, at this point, sometimes I still do, but I’m just not mollycoddling her anymore. I think it’s time she realized that I get frustrated too. Before she goes out into the world, she’s going to have to get used to the fact that she’s not the only one using it. The whole world does not have to acquiesce to her oddness and her needs, and indeed, it won't.

The thing is though, I back off before she gets too upset. I can only hope her friends, neighbours, bosses, etc., will know to do the same. Yes, I can envision some lost friends and lost jobs in her future. But I don’t think I can prevent that. I can only hope she learns from those occurrences. The world will not be easy for her to fathom, but as far as I know, it’s the only one we have. By now she knows there are a lot of uninformed people wandering around out there who will judge her without knowing her or knowing anything about Asperger’s, or even knowing anything about much at all. This is the state of our world. It's an information highway with some people whizzing by without noticing anything but money, and yet others wandering aimlessly on the shoulder of the road with no direction. Adjustments to reality can never be one-sided. She will have to walk as softly as she can, and carry her own verbal version of the proverbial big stick to get by without either being run over, or held up by others.

I only hope I've prepared her for the world we live in.

Thursday, August 5, 2010

The Inevitable

Before I get on with the sequential story, there is something I need to mention. Our home wasn't exactly abandoned during this time. While we weren't living there, Hubby went almost every day to clean the snow, pick up the mail, turn off some lights and turn on others, often he showered there, just to create a presence. He came home a few times during power outages to start a fire in the wood stove so the pipes wouldn't freeze. He even kept some of my plants alive. On top of this, he also cleaned the snow at Mom's and took a lot of time off work to help with Mom's care. It was his toque that got put on her head during a trip home from the hospital. Without him, there were a few times I mightn't have gotten her up the front steps. He never complained. He was a rock. I have great taste in men. He is in the background of much of this story, because that's where he was. A source of annoyance to Butterfly sometimes, because of his typically male sense of humour, he nevertheless always had our backs. Needed to be said.

Pre-heart attack days.

Mom didn't do too bad through Christmas and her 87th birthday. Most days she got up for a wash and I was able to get her into the living room for her afternoon tea. She also took an interest in finishing some knitting and making some quilling art jewellery for Christmas, and some days she even felt chipper enough to sit at the table to write some greeting cards. She joined us for Christmas dinner, but didn't really eat much, or stay long. I got her settled back in her room and took her a wee glass of brandy.

Butterfly hung a couple of strings of those mini lights in her room to brighten it up for the holidays. We put a small, real tree on the library table in the living room, just as Mom always did and put up her decorations. Butterfly had a Charlie Brown tree in her room. The celebration that year was gentle and understated.

In the new year, Mom became increasingly stubborn about getting up. Sometimes I could tempt her with an equestrian event or something else she really liked on TV and get her to come to the living room to watch. But other days she really didn't feel like getting up and would say, "I'm tired, Wendy. I just want to rest."

As Easter approached, she was clearly becoming less interested in anything and was always feeling tired. Then came the hallucinations. She thought she was at college. Then she wanted to know how the college got hold of her property. I thought at first these late night imaginings were leftovers from vivid dreams spilling into her bathroom visits. But then very early in the morning I awoke to see her light on and went into her room to find her searching her bed for her ring. I assured her the ring was safe and got her settled down again ~ I thought. But as soon as I left, her light snapped on again. There she was searching her bed for her ring again, so I took it out of her drawer to show her it was safe. She looked at me accusingly and wanted to know how I got it. Something was clearly wrong. I got her back into bed, but then she wanted to pick the strawberries she apparently thought were growing out of her ceiling.

Butterfly was at her door by this time, and frightened by her Nanna's bizarre behaviour, she wanted to call 911. I told her to go ahead. I got Mom settled down a bit, telling her I thought she may have had a stroke. Butterfly stayed with her while I dressed, then we switched. Once again we followed the ambulance to the hospital. Turned out Mom had a bladder infection. This is something I had never heard of before, how a bladder infection can rob the elderly of their right mind. The nurses had long since ceased their visits, but it seemed to me this was a tidbit of information they might have left me with. It also would have been helpful if Mom's doctor had returned my calls to his pager the previous day, but he didn't. So Mom was admitted to the hospital and put on antibiotics. She was also tied down, because she wanted out and the nurses were afraid she'd fall and hurt herself in her efforts to escape.

After a few days, they needed the bed again, so even though Mom still wasn't quite herself, they released her. I wasn't sure I could even get her up the front stairs, but we managed, and got her inside and in bed, where she eyed me suspiciously. Over the past several days she had been living some interesting, but very imaginary scenerios. That first day back home wasn't a good one. Apparently I was the enemy. But I got her food and meds into her, and the next day her behaviour was more normal. She had a few funny glitches, like thinking that her well was in a community we used to live in. I told her the well was right outside the door. She looked at me suspiciously, then smiled sheepishly. I gave her a hug and welcomed her back.

That very evening she took another heart attack. I was beside her when she shuddered, and lost consciousness, her eyes rolling back in her head. Then she threw up. Hubby was there too and he dashed to call 911. When she came to, she wasn't happy that she was going back to the hospital, but she put on a cheerful face for the paramedics. Too cheerful. They took her to the hospital, but apparently the one paramedic told the doctor on duty that she'd probably just had too much nitro. (She hadn't.) Nobody asked me what happened. We waited in the emergency waiting room almost all night before I insisted on seeing her. There she was, hooked up to an IV. Her blood pressure was low, but unbeknownst to me, no tests had been done. She had told the doctor she was 78, turning her real age around. But the doctor only criticized me for sending her in, and the nurse suggested maybe I needed a vacation. They released Mom. I knew it was all wrong, but there was no one there who'd listen. It was just rotten luck that we'd gotten a bad doctor who let the paramedics diagnose the patients who came in. We took her home.

We got her into the house and poured a brandy for everybody, except Butterfly, then hit the sack. But not for long, for me. I took Mom's blood pressure every hour all day and tried to get something into her that would stay down. But nothing would, not even water. I wanted to call 911 again and hope for a better doctor, but Mom really didn't want me to. So I was up all another night with her too. In the morning, Butterfly was helping me take her to the bathroom when Mom collapsed. We lowered her gently to the floor and made the call. This time one of the paramedics took her blood sugar, and said "hmm 14, not bad."

"Yes it is," I said, sternly. I was tired and put out and in no mood for any more crap. "Her sugar is never above *7.8 at this time of day." The paramedic changed her tune and they got Mom into the ambulance, again with Butterfly and I following. This time we got a doctor who did the tests. He confirmed that she'd had a heart attack in the past few days. Her organs were shutting down.
Mom wound up in the ICU where her body stubbornly fought back. She said her goodbyes to everyone and was ready, but her organs weren't. After a couple of days, she was moved to a room again.

Memories are important when you lose someone.

Now, Mom wasn't there long, but this was when something happened that gave Bud a special memory of her Nanna to soften the blow. Days in a hospital room are long and boring, especially to a hyperactive kid, so Butterfly routinely went out to walk her dog or just goof around. One day she brought her skateboard along. She said she'd be careful to use it where there were no people. But she was approached by a security guard who threatened to remove her from hospital property. To this, my Aspie kid who usually couldn't say boo to anyone, told him he better not try it, because she was a minor and her mom was inside the hospital. He apparently didn't like being talked back to; she wound up telling him to go to Hell and came back to Mom's room to tell me what had happened.

Her Nanna was just waking, so Butterfly repeated the story for her, but before she was even through, Mom piped up, "tell him to go to Hell!" Both Bud and I had to laugh as we both said that she had.

Now, Butterfly knew how to lie, but it would have been unusual for her to lie under pressure, so I believed her story. When I approached this security guard (Butterfly pointed him out to me), he tried to tell me that she'd told him to f*** off. I looked him in the eye and said, "she told you to go to Hell. Do you know the difference?" This guy was visibly shaking and couldn't look me in the eye, so I know who was lying, and it wasn't Bud.

Some might think I should have admonished Butterfly for her behaviour, but I was very pleased that my shy, socially unresponsive Aspie daughter had stood up for herself when threatened by this police academy drop out. I want her to respect authority, but not those who abuse it. I was fairly bursting with pride that she had stood her ground.

Mom passed away in hospital, peacefully, not long after. We still smile when remembering how she shouted out, "tell him to go to Hell!" Sassy and spirited, right to the end.

*Canadian measure

Wednesday, August 4, 2010

24~7 Means 24~7

Well, at least the challenge of baking for the farm market was no longer an issue. In the face of all that was happening, it just went by the wayside. I didn't leave them in the lurch; they'd already started buying from someone else before I had to quit. We would miss the bit of income, but this was getting to be an ongoing theme in our lives. 24~7 meant 24~7.

The emergency with her Nanna had been hard on Bud. She'd been very scared and had to go through some of it alone when I had to be with Mom. She and my mom were like two peas in a pod; they were very important to each other. Butterfly readily agreed to move in at Nanna's so we could look after her. And as Hubby had said years before, as long as she was with her family, home was wherever we were. I encouraged a one-day-at-a-time, but let's get comfortable kind of approach to the situation. So Butterfly busied herself creating her own space in Mom's sun room, hanging up her rock star posters, etc. Butterfly's distractability was frustrating when trying to get her to focus on a school subject, but it was also a positive in some situations, like a defence mechanism that carried her away from the stresses of life. It allowed us all to step back and take a little breather.

Both she and dog were very familiar with Mom's house. Before Mom's heart attack, the dog would routinely tease Mom by stealing one of her slippers when we came in from shopping. We would all chase him around the house to get the slipper back. It was fun. But now the dog didn't bother with Mom's slippers at all, even though they were tucked under her bed like always. Instead he went into her room, put one paw gingerly on the edge of her bed and looked at her, sniffing the air, as if to satisfy himself that she was ok. He checked on her this way at least once a day.

The cats ~ now they were a different story. They were just scandalized by being brought to a different house, one with a solid door instead of a glass sliding door that they could watch the birds through. They just didn't understand what this was. But at least they soon established their favourite hiding places and could usually be found in one or another of them. They were asked to stay out of Mom's room which, for the most part, they respected, except that Pepper took to sleeping in Mom's closet sometimes. But they didn't bother Mom. No, it wasn't magic. I just took them to the doorway and told them "no." And like any animal, they instinctively know where they aren't wanted. A dog will try to change the situation, but a cat will usually just skulk away. They have better things to do anyway, thank you very much... like sleeping for instance. I wasn't sure how Mom was going to take to all these critters in her home, but oh well. We are family.

When Mom first got tucked into her hospital bed, she smiled and said that it felt like a cloud of feathers. She was glad to be home. We were to have a community nurse come in regularly to check on her and help us acclimatize to the situation. The first visit was eventful. The nurse took Mom's vital signs and chatted with her. Then she came out to the dining room to write her notes. It was early and Mom hadn't had her breakfast. I had made her a tray and took it in when the nurse came out. Then I came back for her juice and gave it to Butterfly to take in while I spoke with the nurse. Suddenly Butterfly yelled, "Mom! Something's wrong with Nanna!!" Deja vu. I dashed into her room, but I could hear the nurse right on my heels, so I simply grabbed the food tray out of the way and yielded to her. Mom's eyes were open but unresponsive and her teeth were clenched tight, so the nurse was unable to give her a shot of nitro. Deja vu again. The nurse said to call 911, so off I went. When I got back, she was calling Mom's name and slapping her lightly on the cheek. Suddenly Mom snapped out of it. She was very annoyed to hear I'd called 911, but hey... the nurse says call, I call.

Meanwhile, Butterfly was in the living room pacing, crying, and saying out loud over and over, "I don't want Nanna to die, I don't want...." I comforted her and told her Nanna had snapped out of it and was ticked off at having to go back to the hospital, so I was pretty sure she was going to be ok. Indeed, we followed the ambulance back to the hospital and a couple of hours later brought Mom home again, wrapped in a hospital blanket. They hadn't been able to find a reason for what happened, except that maybe it was an odd, scary fainting spell. Back to bed she went, and a new meal prepared for her. It was beyond unfortunate that it was Butterfly who'd discovered Mom both times she'd been in trouble, but I acknowledged this and talked about it with Bud to help her keep a perspective. For a few days she was scared to go into her Nanna's room alone, but as time went on, she got over it.

We settled into a routine of meals, meds, and looking for things for Mom so that, as well as reading, she could keep busy writing notes or doing some crafts. It was on-the-job learning how to manage her diet (unmedicated Type 2 diabetes), her meds, check her blood sugar and blood pressure regularly, and the nurses taught me how to dress her wounds ~ a couple of pesky sores on one ankle and foot that all the time in bed wasn't helping. I'd coax her to get up whenever I could, and sometimes she sat at the dining room table to write her note cards, and though she had a TV in her room for her favourite programs, I sometimes got her to sit in the living room to watch a special program or just to have her afternoon tea.

As summer turned into fall I'd been looking for schooling resources for Butterfly. I'd had a chat on the phone with her psychologist who thought the move must have been very hard on Bud, but with everything else, I didn't really think so. In fact, Butterfly made some friends just down the road which was kind of fun for her, so except when she was in reaction, she was fairly content. When she got into something she shouldn't have had, which happened from time to time since we had different products in the house for different people, then she would whine and cry that she wanted to go home. But a check of her eyes told us this was temporary. Her reactions didn't last as long as they used to. Somehow because she was bigger, her body metabolized the toxins differently... at least more quickly. But at the same time, her reactions were louder and more violent. That's when I was glad of that boundary established with the police. It was a threat I didn't like to use, but there was also an elderly woman we cared about at the other end of the hallway, so hey...

Butterfly in a happy moment at her Nanna's

What was good for the Nanna was also good for Butterfly, so keeping her busy was important too. The psychologist had given me the URL for a site where I could get sample GED tests, so I printed those up and gave them to Bud regularly. We also got her a Nintendo DS with math problems on it she was to do daily for exercise, and I gave her other assignments as well. It wasn't an ideal situation, but I was pretty busy and thought she was old enough to start showing some independence in her studies anyway. I gave her writing assignments to do, and when she asked me a question I couldn't answer, I'd ask her to research it on the internet and write me a report about it. She never did. Not one report did she hand me. And when the writing assignment was creative, she'd come up with a great, complex plot she'd tell me all about. But when she tried to put it on paper, it would be like, "Bill went to pick up Betty and they went out. The end."

Over time it became clear that Butterfly has an extremely vivid and creative imagination ~ the makings of a great story teller. But if she ever goes that way, she's going to need a good secretary, because the technical writing skills just aren't there and nothing I ever tried helped. What with everything, we'd cut some other studies short. We never finished our "visit" to India or Japan, and the information I'd gathered up on the "Stans" (all those countries whose names end in "stan") went by the wayside. But at the same time, I felt the things happening in our lives were valuable learning experiences, and the sample GED tests were at least giving her an idea of what she needed to prepare for.

Meanwhile, Mom didn't like being an invalid. She thanked me every single day ~ for supper, or that wee dram of brandy at 5, for tuning in her TV, or just in general, before turning in. But she had hoped things wouldn't happen this way. Thing is, we had to cope with what we had. That heart condition that caused the heart attack in the first place was still there and wasn't going to go away. So, at 86, she just wasn't going to get past this and get back to the way she was before. And so we settled in for the winter.

Monday, August 2, 2010

It's Just Life, But Sometimes It's Challenging

We had a good winter, but summer was shaping up to be very busy again. We weren't doing the Market ~ it had petered out. But a fellow purveyor of homemade goodies had been asked by a small roadside farm market to make things for them. She wisely decided against it, but she recommended me. I said I'd try. But by the time June came around, I was run off my feet trying to make preserves and pies, do activities with Butterfly, and take Mom shopping, and to appointments and events.

I'm only one person, and I was spreading myself pretty thin. It's nice to get some bills paid, but both Butterfly and Mom needed my attention. I would take a dozen pies to the stand in the morning, and they would routinely call me at 1 p.m. to say they were out. Oh well. A dozen pies a day was already challenging. I wasn't about to do more. Moreover, the operators of the stand were taking advantage by charging me more and more for the fruits I needed for the pies. I found better deals on blueberries and strawberries elsewhere, but buying the raspberries from them, I was only making 80 cents a pie. They were making $2.00 a pie, plus what they made on the fruit. It was as if they thought I was their benevolent Aunt Minnie doing all this work just to be swell. But that was not the idea.

Before I could deal with the situation, Butterfly and I had taken Mom to a luncheon with her craft club. Then we went to do some shopping for ourselves before picking her up. We had one more stop to make before going home. Butterfly liked the wieners at a German deli nearby, so we went to get some. When we got there, Mom decided to wait in the car with the dog. When Butterfly and I came back out, I went to put the wieners in the trunk. Suddenly Butterfly yelled, "Mom! Something's wrong with Nanna!"

I dashed to get into the driver's seat next to her. She was upright, yet not really conscious ~ obviously in distress. I called out to her and got no verbal response, but she was clearly trying. I told Bud to call 911 and I grabbed Mom's purse to get out her nitro. I tried to give her some, but her teeth were clenched shut. One woman heard Bud's yell and had already called 911 on her cell. She handed me her phone. I had Bud get the dog out of the car, because he was barking his head off and I had trouble hearing. Two women from the deli came out with cold cloths to use as compresses on Mom's head.

Now, I've learned since that most 911 operators are really good at what they do, but as luck would have it, I got some full-of-himself jerk who suggested that Mom had probably only passed out from too much nitro. "Happens all the time," he chuckled, as only an insufferable know-it-all can. "She's in trouble! You get an ambulance here!" I yelled into the phone. A woman took over at the other end and assured me an ambulance was on the way.

"Wendy, take me home!" demanded Mom suddenly, out of the blue. She was still not really conscious, but she was fighting whatever was happening. I had to smile. "Not this time, Mom," I told her. She had asked this of me several times in the past and I had always complied, including the time she passed out at the dentist. But this time she was going for a ride in an ambulance.

The paramedics had a terrible time getting Mom out of the passenger seat of her little car, but they finally did, got her into the ambulance and started emergency treatment. Then they took off for the hospital with Butterfly and me following. Butterfly was clearly terrified. She had paced back and forth at the deli with her dog, worrying her poor heart out for her Nanna. When we got to the hospital, I found a shady spot for the dog, because Butterfly was just not going to wait with him in the car. She had to wait in the emergency waiting room though, while I went into emergency. I was Mom's next of kin, Power of Attorney, and had her health card, list of meds, etc., so they needed me to start treatment on her.

When I went in to see Mom, she was conscious and had that sheepish look on her face that we all get when we're sure we've inconvenienced our loved ones. I sat with her and reassured her. The Emergency doctor said she had had a heart attack. A bad one. She'd be staying a while, so we talked about what she wanted me to bring for a stay in the hospital while we waited for the doctor assigned to her case. Her own doctor didn't have privileges at this hospital, even though it was local. This sometimes left his patients with a parade of "doctor-du-jour." But Mom only had two doctors while there ~ one in the ICU and another when she was moved to a room. Both were caring, informative doctors.

Anyway, Hubby popped his head into Emergency to check on Mom too. I had called him when I went out to check on Butterfly. He wasn't home, but I'd left a message on our answering machine. After a few minutes, he and Bud left for home with the groceries. Finally the doctor came and said they'd found a bed for Mom in the ICU and would be moving her. That was my cue to go do my errands.

I grabbed something to eat at home with the family, then we all went to Mom's to pick up what was needed and went back to the hospital. The nurses had gotten Mom all settled in, and we brought her the personal items she wanted. It was a chance for Butterfly to see for herself that her beloved Nanna was awake and talking. It had been quite a scare for her.

Longer story shorter, Mom was in the ICU for 3 days, then in a room for 3 days, then they were already measuring her for a walker and talking about discharging her. When my dad had a heart attack years earlier, they had kept him in the hospital for four weeks. But they don't do that anymore. They always need the bed. So Mom was to be discharged after less than a week in hospital after a bad heart attack. The discharge nurse called me one day, just before I left for the hospital. She said that Mom seemed to think everything would be the way it was before she had her heart attack, but Mom was going to require 24~7 care, at least for awhile.

Butterfly at Mom's

Mom wanted to just be at home, so I checked with the fam that they wouldn't mind camping at Nanna's for awhile, and they didn't. I rented a hospital bed. They could only deliver it on Friday morning and Mom was supposed to be discharged on Thursday. I asked the hospital to keep her one more night, and they agreed. We grabbed some things from home and went to Mom's on Thursday night. We moved things around, putting Mom's bed and one of her trundle beds in one room for Hubby and me, and the other trundle bed in the sun room for Butterfly. We stayed over that night so we were there to help set up the hospital bed in Mom's room in the morning. Then we went to the hospital to get her.

Thursday, July 29, 2010


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.


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.


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.

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.


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.