autism

Transitioning to High School (Part 2 of 2)

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In my last post I described the rocky start we’ve been having as my daughter transitions to a “real” high school. It was her idea, and it is part of the larger goals she has set for herself, but her anxiety has been worse than expected. She’d had a good week previously, and I thought we were over the worst of it, but then this past week her anxiety resurfaced. It was terribly discouraging and she was beginning to doubt that she could get through this. I was worried for her: worried that if she quit she would never forgive herself, that she would lose confidence, and that it would take years for her to try again. I knew in my heart that she was ready for this step, I just had to figure out where the anxiety was coming from. So I thought about what had transpired over the last couple of weeks.

The week before had been great, but it was also rather unique. It marked the start of a new semester, a week where the school comes together for team-building exercises and lectures on basic skills (e.g., inquiry, logic, rhetoric); there are no formal classes. Each day began with a morning ritual that included a drumming circle (which she enjoyed) followed by a series of games and exercises that she found easy and fun. Importantly, the week had a predictable routine and required little from her in terms of knowing where to be next or what she should be doing because the whole school participated in the exercises together. The rules and expectations were new to everyone and clearly laid out to the group for each activity. And although she came home pleasantly exhausted, she made it through each 4-hour half-day without any trouble.

The following week, classes began. She had Mondays off, and on Tuesday she left after the first class, but she seemed mostly okay, just a bit confused (see below) and tired. On Wednesday she asked me to come get her after the first class, and she broke down as soon as she got in the car. She was terribly upset, and she refused to go back the next day. The next night she told me she didn’t want to go Friday either. I’m afraid I tried pushing her (gah! I know better than that – it never works!!) as my own feelings of worry and anxiety overcame me, which of course was the wrong move (pro tip: increasing anxiety in someone who is already anxious does NOT help!). She broke down and started saying maybe she had made a mistake, maybe she was not ready for this. That got me really worried so (after I apologized) I went to bed and thought long and hard about the situation. By the next morning my thoughts began to settle on a coherent explanation for what was going on.

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I know from years of dealing with my son (who has more severe autism than his sister) that one of the most effective ways to reduce anxiety is through routine and predictability.  When faced with a new situation, we engage in a process our therapist calls “front-loading”. We let our son know exactly what he can expect, which helps ease the transition to the new activity or environment. I realized that my daughter was not getting any front-loading. It’s tricky because the things you explain in the front-loading process are usually so “obvious” to neurotypical people that it can be difficult to even identify them. I thought about her first week, and how front-loading might have helped.

Her first class on Tuesday was Math. She came home not even knowing if she had been in the right classroom (and was too embarrassed to ask). She told me later she felt “stupid” because she was certain that she was far behind everybody else, which she based on the fact that everybody else seemed to “know what they were doing”. She felt utterly lost, but nobody knew it because she is so good at hiding her feelings in front of strangers (a typical trait of Aspie girls).

The next day was science class, which she was so looking forward to, but which turned out to be a review of lab safety procedures followed by a pantomime exercise which she didn’t understand. To make it so much worse, she became convinced that she had embarrassed herself in front of everybody. After that was lunch, which she had been excited about because she and her new friend were going to walk to the nearby convenience store. But she got so worked up about “making a fool of herself in class” (which I am quite certain she did not do) that she was “too terrified” to enjoy the outing (interpretation: she was a wreck thinking about how she had embarrassed herself in front of everyone).

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After lunch was teacher-supported study block, but when one of the kids told her that it was a time to work on projects, she got anxious because she didn’t have a project, and the idea of sitting through an hour of not-knowing-what-to-do was just too much for her. By then she had reached the breaking point and needed to come home.

In reviewing all this (most of which I didn’t know until she told me Thursday night) I could see the perfect storm that led to her anxiety overload. My suspicions were confirmed when I met with the math teacher the next morning. I learned that because math class involves kids at different grade levels and abilities, each child works on their own curriculum. The teacher goes around to the kids helping them with their workbooks and sometimes gives talks about new concepts if a group of them are working on that. I can see why my daughter was confused about whether she was in the right place, because she was expecting a teacher standing up in front of the class lecturing. Also, the teacher had given her a workbook but she didn’t understand what to do with it, and she felt too “stupid” to ask.

No wonder she felt so lost, confused, and insecure. Had all of this been explained to her ahead of time she would have known what to expect and what to do, and that would have greatly eased her anxiety. For the science class, if she had known ahead of time she could have thought about the pantomime, I could have helped her understand what the purpose was (they were supposed to act out what not to do in the lab; it was supposed to be funny), she could have rehearsed her bit, or practiced how to politely decline.

I began to mentally berate myself: how could I forget how important it is for my kids to be front-loaded? It’s the curse of her being so high-functioning, and so capable of masking her true feelings when out socially. But I was now certain that the key to reducing her anxiety was for her to know what to expect ahead of time to a much greater level of detail than was being provided up to this point. She had to feel competent and capable, and that meant knowing what to expect and knowing how to prepare for it.

The plan I came up with was to work with her at home before each class in order to ensure she was prepared for the day. And we would also review the materials after each class so she understood what was required of her. 

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To pitch the idea to her, I framed it in the context of University (which she is excited about attending one day). I explained how at University (particularly in the early years of huge class sizes) you don’t really go to class to learn the material. You go to class to get the material. Then you take home your notes and handouts and you review it (i.e., you study the material). If you have questions, you book an appointment with the professor. And the really successful kids find out what the next lecture will be about, and they study the subject beforehand. So I suggested to her that we create those same habits at home. It would help ease her anxiety, and as a bonus it would help her develop good study habits.

When I told her my idea, she responded positively. Although the night before she had told me she didn’t want to go to school, she agreed to come that day for French class while I met with her math teacher to begin our new plan.

She had a great time! None of the kids have had much French (the school has been doing German as their second language for the last few years) and so she is not behind at all. The format was simple: the class reviewed words and phrases together, repeated them following an audio prompt, and they got a list of all the words and definitions. She told me that she was glad she’d gone to school, that she really liked the class, and she was invited to a get-together by her new friend and another girl! The class has a pretty straightforward format, she was able to follow along without any trouble, and she is not feeling anxious about going to the next French class on Monday (yay!). We are going to review her homework tomorrow (making flash cards using the words they learned that day – she is excited about illustrating her cards!), so that she comes prepared and confident.

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For science, I’ve emailed her teacher to find out what subject will be covered next class. She and I will review the topic at home so that she has a basic understanding of the context when she arrives at class. This will help her feel less anxious and insecure. After class, she and I will review the material that was covered, research anything she doesn’t understand, and prepare for the next class.

As for Math, I brought home her workbook and explained what I’d learned at my meeting with her teacher. I could see how relieved she was when I explained the format of the class, and she was rather excited by the fact that she had her own workbook. She has the choice to work on it at home with me, or go to class and work on it there. Right now she wants to work at home, which is fine. We will go through it together until she feels more confident, and then she can attend math class at school. If she wants help with something, she can go to a math class or to the teacher-supported study block.

We are both feeling optimistic about this plan. This week she will attend for French and Science and work on her math at home. It’s only one (2-hour) class a day, four days a week, but after her big setback this past week it’s important to proceed slowly. I’m feeling confident that this new plan will go a long way to easing her anxiety levels. I promise I will keep you posted (thanks for all the lovely messages of support!), but for now both her and I are feeling very hopeful!

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Categories: autism, Education, learning, Miss Em | 4 Comments

Transitioning to High School (Part 1 of 2)

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In my last post I explained that my daughter, Miss Em, has begun attending a “real” school. We found a lovely little private school that seemed the perfect fit for her, and a great place to move forward with her social and academic development. Unfortunately, neither her nor I anticipated just what a huge change this would be for her, and it ended up triggering her anxiety to levels we haven’t seen in a long time.

Our whole family was excited about her first day, and so was she. But only a couple hours into it she begged me to come pick her up. She was having a huge anxiety attack and was terrified of having a meltdown in front of all these strangers.

The next morning I met with the teacher support person who helps students both academically and with their social/emotional needs. Although Em took to her immediately and her presence was comforting, Em continued to suffer from anxiety. It was hard for her to put into words what the problem was, so it was hard for the rest of us (me and her teachers) to figure out how best to support her. I was blown away by the concern and desire to help that was expressed by the staff: I could not have asked for a kinder, more supportive environment for her.

For her part, Em remained positive and determined. She knew that the first little while would be tough, and she knew that eventually she would get to know the other students and teachers. She looked forward to feeling part of a family, as she had at her previous program. Still, she was struggling to make it through one class per day.

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Last week was the start of the new semester, and they begin with a week of team-building and group exercises. She had a great week, and I honestly thought the worst was behind us. She even made friends with a girl who loves to draw. I really thought that was the final turning point, and from there on in, we would have smooth sailing. The following week (this past week) the new coursework began, and we were both feeling positive about it.

So it was with dismay that I found myself once again responding to a text message asking me to come and take her home. As soon as she got into the car she burst into tears, saying how hard this was, how she was beginning to doubt herself, etc. My heart ached for my daughter, and I recalled with sadness all the struggles she has faced in her short life.

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I lay awake for a long time that night, thinking about the problem and what we could do to help her. I recalled the words she had said to me in anguish: how she felt so lost, how she felt she must be much less intelligent than these other kids, how she dreaded going to sleep at night because it would bring another day that much closer. Even though my own life was currently worry free, my heart was suffering for her.

But then early the next morning, as I was slowly waking up, I had a lightbulb moment. I felt I had finally figured out what the problems were and – most importantly – I came up with a solution.

Continued next post…

 

 

 

Categories: autism, Education, learning, Miss Em | 2 Comments

On the Road to Eating Competence

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In the last two posts in this Feeding Therapy series, I outlined the feeding and eating program developed by the Ellyn Satter Institute and provided some background to explain how I became a “feeding failure”. Today, I discuss our goals and our plan for getting there.

The ultimate goal of this program is to get my children to the point of Eating Competence, which is a model developed by the Ellyn Satter Institute. As described by the model, eating competent children:

  • feel good about eating, and have the drive to eat
  • naturally eat as much as they need, and grow in the way that is right for them
  • learn to eat the foods their parents eat
  • enjoy a variety of foods, and enjoy learning to like new foods
  • enjoy family meals, and learn to behave well at mealtimes

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In the case of our family, there was a lot of overeating going on, virtually nothing that the adults ate was eaten by the children, the kids had a very limited variety of foods they would eat, and an intense dislike for anything new. Family meals did not happen in our household, and the kids actively resisted the idea of doing so (and frankly, so did I, for reasons outlined in my last post).

Achieving the goal of Eating Competence requires me, the parent in charge of feeding, to follow the Division of Responsibility, which is:

  • provide regular meals and snacks
  • choose and prepare the food
  • serve food at the table, without TV or other distractions
  • make eating times pleasant
  • show children by example how to behave at mealtimes
  • be considerate of your child’s lack of food experience without catering to their likes and dislikes
  • don’t serve foods between meal and snacktimes
  • let children enjoy the body size and shape that is right for them

I know from past experience that, when starting any new lifestyle plan, it’s important to take baby steps towards the end goal: do the first step until it feels normal and natural, and then add the next. So, as recommended by the program guidelines, I broke the process down based on where we were starting from and the particular eating issues that our family was facing.

  1. the parent is responsible for providing food
  2. implement regular meal and snacktimes
  3. eat one meal at the table together as a family
  4. gradually have more meals and snacks at the table
  5. gradually reduce the “extra foods” added to the table to accommodate specific likes and dislikes

In my next few posts, I’ll talk about how it is going, the steps we have implemented, and any difficulties or results we are seeing. Thank you for following along!

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Categories: autism, family life, Feeding Therapy, parenting, Uncategorized | Leave a comment

How I Failed at Feeding my Children

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About 2 and a half years ago, I wrote this post about giving up on the feeding therapy program I’d tried to institute. Not much has changed since I surrendered to convenience foods and making three different recipes at every meal…until now, that is.

In the last two posts in this Feeding Therapy series, I describe the Ellyn Satter Institute approach to eating and how it shed light onto my own struggles with eating and weight loss, and I outline their program for feeding children. In learning about the program, I came to realize that I was responsible for my son’s weight problem in ways that had never occurred to me.

I had started with such lofty ideals as a new mother: How did I get to be a Feeding Failure?

It starts, as eating issues usually do, with my own childhood. My mother was a war survivor who suffered through hunger and food scarcity as a young child. She used to make us stay at the table until our plates were cleaned. It made for many an unpleasant evening as I tried to force myself to eat foods that made me gag and sat alone for what felt like hours after everybody else had left. I vowed that I would never do the same to my own children.

My kids started out as great eaters, but they soon dropped one food after another until their diet was startlingly limited. It’s called food jagging, and it creeps up on you slowly and unexpectedly until you suddenly realize that they’ve backed themselves (and you) into a food corner that is now making it difficult to provide balanced nutrition for them.

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At first, I tried to fix this by following the advice of others to make them “try a bite” of vegetables and other foods that we all thought they should be eating. This, combined with their sensory issues and attention deficits – none of which were recognized by us at the time – made for some really horrid mealtimes. Lots of crying, screaming, arguing, cajoling, and full-on body tantrums.

I tried…I really did…pressured by my husband, my mother, and my own ideas about what feeding children should look like. But my gut told me that so much stress for everyone could not possibly be good for the kids or our family. So I gave up, and began cooking and serving separate meals to the kids and the adults. Lots of work for me, but at least it was peaceful.

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I reasoned to myself that, since we were a homeschooling family with a husband who worked largely from home, we got enough “together” time that not having sit-down meals together wasn’t a problem. Feeding the kids separately from the grownups also offered us the only apparent hope for eating our own meals in peace. Every now and then we’d give it another try, and it always ended in misery and failure.

Then they were diagnosed with autism, which I took as further justification for giving up on family dinners and hopes of a varied diet. Cue the gummy vitamins.

We moved into a tiny mobile home, and the dining table quickly morphed into a workspace for me. The kids’ bedroom was right off the kitchen, and it was just easier to serve them in their room, rather than having them come into the already crowded kitchen to pick up their food.

My mother came to visit us one week and asked, as neutrally as she could (I give her credit for that), if I served the kids their meals on a tray every day or was this just because she was visiting? (nope, I did it every day, for every meal). It was then that I started to realize just how far into crazy-land we had come.

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I told myself that when our new house was built, I’d make them eat at the table or breakfast bar like normal children, and stop serving them like a waitress. But it’s unlikely we would have eaten together. I’d have served them first to get it out of the way so I could enjoy a peaceful dinner with my husband.

You can imagine that making so many meals, so many times a day, quickly became exhausting. When convenience foods no longer cut it, I moved to making them prepare their own meals. It started with me telling them I was no longer making lunches, then progressed to breakfast on weekends, and then I made the ultimate deal: in exchange for pizza twice a week, I created “make your own dinner night” twice a week. That was four nights a week I didn’t have to make a bunch of different dinners – win for me!

But despite the appeal of the pizza, the kids never embraced the concept of making their own meals (they eventually changed it to one night a week; that’s how much they hated making their own dinner). Miss Em simply didn’t make anything on those nights, and turned instead to her stash of junk food (she regularly cycles to the corner store, buys food with her own money, and saves it for just such an occasion). Mr. Boo made himself dinner (usually some double or triple stack salami sandwich creation), but he complained and stomped around every damn time. And he left a mess in the kitchen that I was loathe to make him clean up, since by then he had only just calmed down and would likely have had a full-on meltdown if I’d pushed it any further (by end of day, that is the last thing I feel like dealing with).

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So that is how I got to the point where I was able to say “yes” to every item on the following checklist for kids who are overweight (or have other eating issues):

  • meals and snacks occur at irregular and unpredictable times
  • meals are not eaten at the table, but in front of computer or TV
  • the kids tell the mother what they would like to eat and mum makes it (short order cook)
  • the kids are responsible for feeding themselves without having achieved Eating Competence (which is the end goal of the feeding program)
  • the kids binge on certain foods, sometimes even hiding the evidence (one day I discovered a stash of snack wrappers underneath my son’s bed)
  • the Division of Responsibility is not being followed

I was a Feeding Failure. And because of it, both my kids had diets that were severely limited and limiting (for example, visiting friends for dinner always meant I had to bring food for my kids). And worse, my son was obese.

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But now I have hope, because the information I’ve learned has given me the tools I need to make family dinners a success. I now understand that the family dinner is about so much more than just connecting as a family (which is nice anyway, even when you are a homeschooling family):

  • It exposes the kids to the presence of new foods, which is the first step in overcoming limited food preferences, and essential for kids with sensory issues around food.
  • Kids don’t tend to enjoy hanging around the table too long (especially if they have ADD), which gives them a motive to eat just enough, and not too much.
  • People tend to eat less when they focus on their eating than if they eat while performing other tasks (like being on the computer).
  • Having food in serving dishes means everybody can decide for themselves how much to eat, rather than being served a portion that tempts one to “not leave anything wasted” and thus eat beyond satiation.
  • Having food in serving dishes allows kids to pick and choose from the nutrients in front of them: research shows that kids will naturally choose foods their bodies need and, over a period of days, will naturally balance out their nutritional requirements.
  • Being at the table allows kids to learn the social norms and expectations around eating in their culture, which will allow them to function better when in restaurants or eating at other peoples’ homes (especially important for kids with social disabilities).
  • It’s less work for mum to have one place where eating and messes take place, and not have to collect dishes from all around the house.

So after an initial wave of guilt as I realized all the ways I’d gone wrong in feeding my kids over the years – and that this was directly related to my son’s weight issues – I took comfort in recognizing that I didn’t have the knowledge and guidelines I needed to be successful back then. And I was excited about this new information, because I believed it really could work with my children.

And once I believed that I could make this happen, that we could sit around the table together as a family and enjoy a meal, that my kids could learn to try new foods, that my son could return to the weight that is right for him…I realized how much I’d wanted this all along.

In my next post, I’ll talk about the baby steps needed to go from being a total Feeding Failure to the end goal of Eating Competence and happy family meals.

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Categories: autism, family life, Feeding Therapy, parenting | 3 Comments

Feeding Your Overweight Child

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In my last post, I spoke about the new feeding and eating plan that I discovered after taking my overweight son (who also has autism) to visit a clinical nutritionist. I discussed some of the principles of the plan, and how it shed light on my own struggles around eating and weight loss. Today, I’m going to discuss the plan in the context of feeding children.

The plan I’m referring to is based on the Feeding Dynamics and Eating Competence models developed by the Ellyn Satter Institute. I should point out that this plan is for ANY CHILD, not just the overweight child. But since that is the issue our family is dealing with, it’s the one I’m going to focus on here.

The basic premise of the program is that children are born hardwired to eat what they need: no more and no less. This immediately reminded me of my days as a La Leche League leader, when I would counsel anxious new breastfeeding mums to let their babies take the lead on when to eat, how much to eat, and how often. So I knew this premise to be true. What I didn’t appreciate was that it continues throughout childhood and into adulthood providing we (the people doing the feeding) don’t screw it up.

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We screw it up by imposing our own values and anxieties around food on our children. We fuss over the ones who don’t eat much, and we chide those who eat a lot. We try to force the picky ones to eat “just a bite” of new foods, while we deem a category of favourite foods to be “bad for you” for the overweight kids. We let them eat in front of computers or TVs, so they don’t focus on their body’s signals of satiety. Or we don’t feed them often enough, triggering anxiety about when they will next be fed and how long they will have to go hungry, which leads to overeating when they finally get some food (a smart evolutionary strategy gone awry). We don’t eat together as families much anymore, so our kids are not exposed to new foods (and here’s the part that nobody told me: sitting in front of food is the first step, a real honest-to-goodness step, in learning to like new foods. That “just one bite” that we were told to insist on? That is much further down the list of steps, and even further for kids with sensory issues).

So, here it is in a nutshell: Satter calls it “the division of responsibility”. I, the parent, am in charge of the what, where, and when of eating and my school-age children are responsible for the whether and how much.

I make sure they eat regularly (no more than 3 hours between offerings), that they sit at the table without distractions (other than my stimulating company, or that of the rest of the family), and that they are offered foods from each of the four groups Satter lists as essential for growing kids: protein, carbohydrate, fruit or vegetable, and dairy (that last one assumes, of course, that there are no dairy allergies, and the book gives details on how to accommodate those). And here’s the fun part: make the food delicious! Cook with fat, sprinkle butter or sugar on those veggies, make everything a joy to eat. Provide a well-balanced offering of delights, and watch mealtime become fun again, not just for those who eat it, but for the one who is preparing it too!

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Nobody wants to come to the table for this.

 

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A delicious, well-balanced meal that’s a pleasure to make and a joy to eat.

The kids are responsible for deciding whether or not to show up for the meal (understanding there is no eating in between meal and snacktimes), what foods on the table to eat, and how much of any food on the table to eat (the exception being dessert, the only rule for which is that there is only one serving per person at the table).

That’s it.

No rules about how long the kids must stay at the table – if they are wanting to get down from the table and/or they are starting to act up, then they are done eating and we need to respect that so they learn to understand what that feeling means.

No rules about eating vegetables before dessert – they can eat their dessert at any time during the meal. It’s only one serving, so it won’t “ruin their dinner”, and they may learn all on their own that it’s nicer to save the sweet stuff for last (or they may not, and that is okay).

No rules about “trying a bite”, no matter how picky your eater. The steps to getting to eat a new food are:

  1. look at the food,
  2. be close to the food,
  3. touch the food,
  4. play with or manipulate the food,
  5. touch the food to the mouth,
  6. taste the food,
  7. chew the food,
  8. swallow the food.

There might even be some more in-between steps in the case of kids with sensory issues. The idea is that, if they are continually exposed to the variety of foods your family enjoys, and there is no pressure on them, they will slowly (or quickly, each child is unique) go through the steps and, when they are older, will learn that new foods are nothing to be afraid of.

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No rules about eating one of everything on the table: if they make an entire meal out of bread and butter, let it be. They will eventually round it out – maybe not that day, but most likely that week – and even fresh, white bread slathered in butter gets boring if that’s all you eat every day. Their bodies will soon crave what they need to balance it out, and you’ll make sure it is on the table when they do.

Finally, no forbidden foods. Regularly (reasonably often) offer cookies for a snack (with a glass of milk and some fruit on the table). Let your kid have as many cookies as they want, while they are at the table. Have potato chips on hot dog night, and make sure there is enough for everyone to get their fill. If your child has learned not to trust that these foods will be available, he or she may begin by scarfing down as many as can fit in their tummies…but eventually they will trust that such foods will be offered, and no limits will be imposed, and this can greatly reduce that chance of eating disorders, or even just the routine binge-and-guilt cycle that too many adults (including myself) get sucked into. It will also make these foods lose their “forbidden fruit” appeal, which goes a long way to healthy eating habits in the future.

I have to say, that when I first started reading I found myself sliding into a pit of guilt. My son was overweight, and to add to the guilt of having let him get that way, I was now faced with just how badly I had screwed up the feeding of my children over the years. On the checklist following “why is my child overweight?” I ticked off pretty much every single item. Regular mealtimes? nope. Eating at the table? nope. Division of responsibility? nope. I realized that I had basically tossed my kids into the deep end of the feeding and eating swimming pool without giving them the proper foundation. No wonder my kid was fat.

How did I get there? I’ll answer that in my next post. I’ll also be blogging about instituting the plan (which happens in stages) and discuss our challenges and triumphs. These posts will be tagged under “Feeding Therapy” if you wish to follow along (or read about some previous tried-and-failed plans).

For now, I would encourage anyone in charge of feeding kids, or anyone who is struggling with their own eating and weight issues, to visit the Ellyn Satter Institute website. I have bought and read two of their books: Your Child’s Weight: Helping Without Harming and Secrets of Feeding a Healthy Family and I would recommend either of them.

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Categories: autism, family life, Feeding Therapy, parenting | 2 Comments

Growing His World

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Over the years that we have been homeschooling, I have tried taking Mr. Boo to any number of classes, activities, clubs, and field trip groups and we have always ended up dropping out. Gymnastics, swimming lessons, kung fu, clay, therapeutic riding, young naturalists’ club…you name it, we’ve probably tried it, and the pattern goes a little something like this.

“Hey, Mr. Boo, do you think you would like to do [insert activity here]?”

“Yeah, that would be awesome!”

At the first lesson or outing, he would be all excited and enthusiastic. By the third lesson he’d be lukewarm, by the fifth or sixth lesson we’d have constant battles just to get him out the door, and his behaviour would become really disruptive for the rest of the class/group. Eventually the stress of it all would get too much for us and we’d quit. I kept thinking that time and maturity would solve these issues, but the pattern just kept repeating.

Two years ago he started attending an after-school program for kids with autism at a local centre for people with disabilities. The staff there are amazing. When his behaviour became a problem, they saw it as an opportunity to learn how to better support him. He was always accepted, never judged, and always supported. Eventually we made it past the “I hate it” stage, and the battles to get out the door, and he began to enjoy going there. He made friends, and now he looks forward to seeing them each week.

He goes twice a week for 3 hours each time. They often go to the park or some local venue, and on days when the kids get out of school early for teacher training, they take field trips to fun places like the indoor playground in the neighbouring “big city”. I used to take my kids there and places like it when they were younger, and it was always a very stressful experience for me. I had to stick so close to Mr. Boo, when what I really wanted was to sit with all the other mums and socialize. Plus, when Mr. Boo inevitably would shove some kid down a slide or whatever, it was extremely stressful for me (I am a very non-confrontational person) and I often ended up in tears dragging my crying child to the car. With the after-school program, he got to have a blast at one of his favourite places and I didn’t have to deal with the stress (the staff, not being as emotionally involved as a parent, deal with this stuff as part of their job and handle it well).

With the success of the after-school program, I felt he was ready to expand his horizons a bit more, get out in the world more, but I was stumped. I felt like we had tried and tried and nothing seemed to work for him, and I was tired of the struggles and battles. It was slowly dawning on me that perhaps I was in over my head when it came to giving him “more”. Project-based homeschooling is great, and we’ve all got this life-at-home thing down pat; it’s relatively peaceful at home for the most part (given that we have two kids on the spectrum). But it has seemed clear lately that he is ready for more, perhaps even eager for it without knowing exactly what “it” is. It’s that parental instinct that tells you it’s time to move to the next level, that your kid is ready. But I didn’t know what that would look like, or how to do it.

The answer came in the form of a new learning centre in our area for kids with autism, which I learned about through one of my facebook groups. While they offer 5 full days a week, families have the option of attending as few as 2 days a week, which is about as much as we felt Mr. Boo could handle right now (and honestly, 5 days a week is just too much time away from the family for our liking). Turns out the lady running the program is a registered provider with our homeschool program’s special ed division and I was able to get feedback from other families in the program – it was all promising.

So last week, Hubby and I toured the learning centre and met the head instructor, a behavioural therapist with a resume a mile long. While her extensive years of work with kids and adults with disabilities was impressive, Hubby and I were much more impressed with the answers she gave to our questions and what we saw of how the program was run. It was apparent that this lady understood these kids and their needs as well as us parents do (and, in some ways, probably better). When I confided in her that our son can become physically aggressive when he is driven past his coping point, she confided to me that every child in the program had come with that same note on their file, and not once had they had any incidences of violent behaviours. She emphasized that their days are designed to give the kids plenty of breaks and opportunities to recharge (they have a sensory room, for example), so that each child meets their full potential. With only six kids in the program, and an assistant or therapist there each day with the head instructor, you can’t beat the adult:child ratio, and we loved that it was a small group.

For those of you not familiar with a learning centre and/or who may be wondering how that fits into homeschooling or unschooling, I plan to write a post on that topic soon. In short, this one is essentially a very small private school for homeschoolers, paid for with our autism funding. The educational philosophy is very consistent with our own – the kids do their academic work through project-based learning, in which the kids direct the project and participate to the full extent of their abilities. Some examples of current projects are: expanding the treehouse in the forest play area with the assistance of a licensed carpenter; converting a garden shed to a chicken coop, building a run, and raising layer chicks (the learning centre is on a 5-acre property); and putting on a play.

Hubby and I left the tour full of joy and excitement at the wonderful new world that is about to open up for our son. He had his first day this week and it went very well – he made friends, he participated in the group discussions and activities, he played, and he even made it through the afternoon martial arts class (they do a different class each afternoon: swimming, skating, and music are also offered). He is excited about going back tomorrow, and we are thrilled about all the new experiences that await him.

I do expect that there may be a transitional period where he decides he wants to quit, where we will struggle to get him out the door, and where he may try the patience of everyone around him. I am determined to make it through! But my gut tells me that it might just go differently this time. The instructor said the children are very supportive of one another, and Mr. Boo is now at an age where he forms meaningful friendships with other kids – perhaps enough to keep him motivated to stick with the group through the tougher parts of adjusting to new routines and expectations.

I’ve been thinking about the implications of our decision to enroll him in the learning centre, and what that means for us, or says about us, as homeschoolers. I don’t think these things are incompatible at all, and I’ll expand on that in my next post. But I’m also coming to accept that I need help and there is nothing wrong with admitting it. Raising a child with autism is no easy task (that’s a subject for yet another post!), and homeschooling such a child presents its own challenges. I’m responsible not just for making sure he is in an environment that is conducive to learning, but also for making sure that he has real world experiences. This is relatively easy for most homeschoolers: the number of activities, classes, clubs, and field trip offerings in our small community alone are impressive, and as homeschooling grows so do the myriad choices and opportunities for homeschooling families. But for me and my son, such opportunities come with particular challenges and I am ready and willing to admit that I am not always cut out for them.

I have much more to say about all of this, but for now I’m going to end by saying that my mama heart is very full this week. I’m so excited for Mr. Boo and all that awaits him. I feel blessed that we have found such good people to bring into his life, and that he is about to be part of something really special.

 

bring it on

Categories: autism, Education, Mr Boo | 2 Comments

Vacation Woes: it’s all about the transition

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We’ve recently come back from a four-day holiday at a remote cabin site with no electricity. The weekend can best be described as stress and chaos interspersed with all too few moments of calm. In the midst of the tantrums, the screaming, the throwing of objects, and the tears (mine and theirs) I felt tossed and turned on a sea of insecurity and doubt. Where had I gone wrong? Had I failed my children? Were they so disabled and dysfunctional that the basic dream of a family getaway with friends was, for our family, just a pipe dream? Had my parenting somehow robbed my children of the ability to cope with anything outside of their home environment?

Now that we are back and I’ve had a chance to think over what happened, I’m feeling less panicked about where to go from here. That last night before we all packed up to go home, my children miraculously emerged from the cabin and actually interacted with the rest of us, sitting by the campfire for cuddles and playing with the other kids on the rocks along the river that lay a few feet from our cabin, while Husband and I enjoyed some snacks and good (uninterrupted!) conversation around the campfire on the river’s edge. My friend noted that it was a shame we all had to go home the next morning, as my kids seemed to be finally coming out of their shells. Back at home, someone else reminded me that, for autistic kids, it’s all about the transitions. You’d think after all these years I would recognize this…but I really didn’t see it until after we came home.

My friend, whose grown-up son has Aspergers, told me that she never took him on a holiday that lasted less than a week, because it would take him 2 to 3 days to adjust to the new environment and routines, after which time he would be fine. They went on holiday expecting the first couple of days to be chaotic. I did not. I did not anticipate that this was a transition and that my kids would need time to adjust. All I saw were kids who couldn’t handle the environment and I despaired. I didn’t stop to think that they would eventually adjust, if given some time to get through the transition.

It’s not that we haven’t travelled before, but almost always the kids have been on board with the plans. In this case, their friends had to cancel and, with no electricity at the cabins, they felt there was really nothing in it for them. In other cases we have gone on holidays and have not experienced such a difficult transition, so I really wasn’t prepared for this one. In the future, we will make sure that if the kids are not really on board with the plans, we stay long enough for them to get through the transition phase. Also, we will go into it with the expectation that the kids will need a lot of support, and that the grownups will have to wait a couple days to enjoy their down time. We feel that it’s important to expose them to this situation once in a while (i.e., a holiday or trip that isn’t on their agenda) in order to give them practice at adjusting to such situations. Hopefully, with the right expectations, the next time won’t be so hard on all of us.

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Categories: autism, family life, parenting, Uncategorized | Leave a comment

Food Therapy Failure

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Back in January, I started a food therapy program for my kids. My sensory-challenged kids have a very limited diet and most of what they will eat is not my idea of wholesome, healthy food. I was hoping that, by following this program, I could get them to tolerate some healthier alternatives. Two weeks into the program I felt I was having some success. But I’m afraid it didn’t last.

My kids soon got over the idea of having dessert as a reward. They began to refuse to have dessert in order to avoid having to eat the stuff on their plate. They complained vociferously about how much they hated the chicken nuggets and despite some progress with the carrots they really couldn’t deal with them. They asked for an alternative but I couldn’t come up with anything and the truth is, I gave up.

It wasn’t just the fact that I was feeling discouraged, it was that implementing the plan was So. Much. WORK. Really, it was exhausting. I would not only have to make each one of them their regular dinner, and the desserts, but then also my own and Husband’s dinner, then I would have to make the therapy ingredients. I just couldn’t keep it up on a regular basis and the lack of regularity was working against me. To top it all off, I got a part time job as an academic editor and since Husband was recently laid off I couldn’t say no to any assignments. That left little time for all that cooking and cleanup.

As much as it pains me to admit it, I’ve had to completely let go of the food issue. My kids are now too old for me to really have much control over what they eat. Had I known what I do now perhaps I could have prevented things from getting to this point, but until somebody invents a time machine there is no point in wandering down that line of thinking any further. Yes, Miss Em could stand to lose a few pounds, but she has continued to shoot up in height and isn’t nearly as overweight as she was. Mr. Boo is still pretty overweight, IMO, but at his recent pediatrician’s checkup the doctor told me not to worry about it. He is at the same percentile for both height and weight (97th) and the doctor said he was happy as long as those two numbers are consistent with each other.

These days I find myself being thankful for convenience food while at the same time wondering how I ever got so far away from the goals I had when I first became a parent. Miss Em eats pretty much the same dish for dinner every night, instant mac and cheese  (white cheddar flavour, and only one brand will do). On my busiest or most tired days it is nice to have something so simple to make and easy to clean (one pan). For Mr. Boo, throwing some gluten-free fish sticks in the oven makes for another easy dish with little cleanup. I hate that my kids eat like that – I don’t eat like that and neither does their father – but I feel like I have to choice but to accept the situation. I don’t feel good about it, but I also see no other realistic option. My only hope is that, like me, they will grow to like new foods as they get older. I started adding foods to my picky diet (which was nothing compared to my own kids’) when I was around 10 or 12 and perhaps my children will follow in those footsteps. Meanwhile I’m just grateful that they are as healthy as they are, knock on wood!

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Categories: autism, Feeding Therapy | 1 Comment

Dealing with Problem Behaviours

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Last week Mr. Boo had a rough transition while getting ready to go out with his behavioural interventionist. I’ve gotten pretty good at dealing with these situations, but I still get caught off-guard sometimes. This time it resulted it me getting punched in the jaw. It has been a long time since Mr. Boo hurt me, partly because it happens less frequently than when he was younger, and partly because I’ve gotten pretty good at staying just out of range when I see that he might lash out. I was very upset by what happened. Not only did it hurt, but I worry about his future. It’s one thing to be a little kid who hits when he’s angry or frustrated, but the picture is going to look a whole lot different when he’s a teenager or an adult. While I know he’s improved immensely over the years, the potential is still there and it worries me.

I wondered if maybe I should be doing something…something more, or something different. I began to mull it over in my head and over the course of the next few days I noted two other behaviours that, while not as bad as hitting, are still things I’d like to address with a more concrete plan than just reminding him such behaviours are unacceptable. First, when he’s angry or frustrated he sometimes throws things. He’ll basically grab the nearest thing and hurl it in no particular direction. Countless things have been broken, but of course there is also the potential for damage to other people who happen to be in the line of fire. Again, this is an issue that has improved over the years, but still presents itself on occasion.

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Second, there is the swearing. This started in earnest about a year ago and, while we all drop the occasional f-bomb in our family, there are times when he really crosses the line.

I began to think that perhaps I was going to have to introduce some form of punishment in an attempt to influence his behaviour. When he is raging, in the heat of the moment, all he can think about is himself. While later he will feel remorse for what he has done, it isn’t powerful enough in the moment to stop him. I began to wonder if maybe a specific punishment would serve as a stronger motivator. I’ve always believed that punishment is ineffective at best, and counterproductive and damaging at worst. But maybe, I thought, I needed to reconsider. Autism has caused me to rethink other aspects of my parenting, so why not this one?

In this case, the punishment that would have the most impact would be one that affects what he loves most: his laptop. But if I was going to implement a punishment system then I would have to be very clear to state the rules up front. Autistic kids respond well to rules that are clearly laid out ahead of time, but they also have a keen sense of fairness: you can’t just make sh*t up on the fly.

Well, I soon ran into some problems. How long would he be removed from his laptop? What if he picked up an iPad instead, or went on the PlayStation? Would watching YouTube count? Would I have to remove access to all screens? Would the extent and duration of the punishment be adjusted to “fit the crime”? And how would I go about doing that when there are no set screen times in our family?

It got worse as I considered more scenarios. What if, as in last week, he hit me as he was heading out for the afternoon? Is he going to spend 3 hours with his interventionist and then come home and not be allowed on his laptop? That is way too much time between the crime and the punishment to be in any way fair or to have any meaning for him. He may have had an excellent session, and he’s going to come home to being punished?

And what if he needed a sensory break? Immersing himself in the digital world is his go-to solution when his sensory inputs get overwhelmed. We’ve always encouraged this form of self-regulation. Using it as a punishment sends the wrong message.

Frankly, the whole thing was bothering me. I just couldn’t come up with a set of punishments that made sense, were fair, and were easy to implement. I couldn’t even figure out what it would look like for myself, let alone explain it to him. But if not that, what could I do to curb these problem behaviours?

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Well, I’m happy to say that the solution presented itself today. Mr Boo had a mini-meltdown when, after finishing his homeschool work, he learned that his sister was using the big screen and he could not play on the PlayStation. By his logic, since he had interrupted his game to do homeschool work, he expected to go back on when he was done. But his sister was now using it. When I said he’d have to wait, he lost it. He went into the bedroom and, before I could go in there to help him calm down, he picked up a timer and threw it across the room, breaking it. I was angry and immediately announced that he was no longer going to get his turn on the PlayStation when his sister was done (and still, in my head, I’m thinking “is this for all day? if not then for how long? what would be a fair delay given that he is going out this afternoon?”). Well this only served to make him more angry and he tried to throw a lamp, but by then I was close enough to block him.

He calmed down fairly quickly after that (we’ve got a system that works well for us now), and began to tell me that this punishment thing was not a good idea. Inspired by the program director at the wonderful Centre he attends each week, I decided to listen to what he had to say and involve him in the discussion (she once spent a good hour doing just that with him, and managed to work a minor miracle – more in a later post perhaps). He told me that my job was to help him calm down (its a set of skills we work on together), and by telling him his punishment I was actually making it worse for him. I understood: he has told me he doesn’t like raging, that it is scary for him, and he is very grateful that I am there to help him find his way down to calmness. So if he sees me as the person – the rock – to which he can cling when raging, then how must it feel to have me making it worse by giving him even more to be angry and anxious about?

My first thought upon recognizing this was that maybe I should wait until after he calms down to tell him of his punishment , but right away that didn’t make sense either. Reward him for doing good emotional work by telling him of his fate? Naw. So instead I asked him what HE thought we should do about these behaviours. He wasn’t sure at first, but then I remembered something I read on the Aha Parenting website. Dr. Markham has written some excellent articles explaining why punishment doesn’t work, and I love the alternatives she suggests. In this article she describes empowering your kids to repair the damage they have done. Whether this is the hurt feelings of a playmate, the broken window of a neighbour, or admitting to stealing a toy, what kids really need to learn is how to make up for their mistakes, to really experience the impact of their actions, and to take ownership and responsibility for their actions. Importantly, they need to see you as someone who can help them do the right thing when they screw up, not the person who just makes them feel worse. So I decided to try her approach with Mr. Boo.

The issue was that he threw my timer (which he apologized for) and may have broken it. Together we came up with two solutions: if the timer was not broken he could make it up to me by helping with some household chore I needed to do. If it was broken, he offered to use his allowance to buy me a new one. What I loved about the process of discussing this with him was how strong our connection was during this time. I had helped him calm down and, as we usually do, I was holding him in my lap and rocking him forward and back (the rocking motion really soothes him). He was hugging and kissing me, his way of letting me know he felt bad for how he had acted. And all the while we talked about how to make up for his actions. He was not happy about having to do a chore or spend his allowance money, but he was a willing participant in this being a solution and the entire atmosphere around the discussion was one of working together and maintaining the integrity of our relationship. There was no argument about whether he should do anything to make up for it: he clearly wanted to. This is so different from the attitude of being punished, where all the focus is on being a victim, with little room for remorse.

For my kids, perhaps more than neurotypical kids, I am their rock. The world can be a scary, intimidating, and frightening place for them and they count on me to protect them, guide them, and help them deal with overwhelming emotions. Punishment changes my role entirely to one of combatant, a player on the other team, which erodes their trust in me. It also puts them on the defensive, sends their anxiety through the roof (with autistic kids, its all about reducing anxiety), and puts them in a worse place rather than a better one.

While part of me can’t believe I even considered using punishment, I’m glad I went through this thought experiment. It has reinforced to me, more than ever, that my instincts were right and that such an approach would do far more damage to my kids than it would help. I’m happy that together Mr Boo and I came up with a solution, that he was involved in the discussion, that it was done in a loving and warm atmosphere of connection, and that he took ownership of his actions and admitted that he was wrong. From now on, when he swears at us, throws something, or hurts somebody we will decide together what he can do to make up for it. It won’t always be fun for him, but we’ll still be on the same team.

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Categories: autism, parenting | 1 Comment

Building Community for my Boy

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This past week I finally got around to checking out a local centre that provides programs and support for people with disabilities, including kids with autism. Through our government funding I would receive notices that they were holding day camps over spring break, and after-school programs starting each fall. I wasn’t sure that my little guy was ready for such things. I had assumptions about what these programs would look like which, in hindsight, were rather silly but understandable.

See, over the years I had gotten used to the fact that my son’s issues were beyond what your average gym coach, art teacher, or camp counsellor could manage. Enrolling him in such programs was out of the question once he got to an age where parents no longer participated in the class. The few times I tried were stressful for both him and myself. In the homeschooling community things were better because there were lots of adults around to supervise whenever we got together for classes, field trips, etc. However, as the kids got older and the other children required less parental supervision I found myself the lone parent following her child around while the others gathered together for social time. It sucked for me, and I don’t think he appreciated me hovering over him either. He was not being allowed the chance to experience life without his mother hanging around. And while I think that kids today spend far too much time away from parents, I do think its important that they have some opportunities to do things without siblings or parents around to gain confidence and a feeling of having something that is their own.

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This past year and a half we have built a great community of individuals on whom my son can depend. He works with these people one-on-one and they have given him the incredible gift of understanding and acceptance. It is wonderful for him to have people in his life who “get” him, who understand the issues he faces and who do not judge him or treat him like there is something wrong with him. This was a critical first step in his “Intervention Plan”. But I also wanted for him to be able to participate in group activities, to get out in the community and spend time with other children without me hanging around.

When the flyer for Spring Break camp arrived in the mail last week I felt like we might be ready to tackle this. My daughter, having gotten her diagnosis this past fall, was now eligible to participate and I thought with her there it would be less scary for my son. But I still worried about him. The days would be long, five in a row, and I worried that he’d get overstimulated. Would he be able to take the breaks he needed? What would happen if he started freaking out on the field trip bus? What if he hit someone? Would he come home a ball of stress?

So I called the centre to ask about the program and got introduced to an angel of a woman who runs the autism programs. Within a few minutes of speaking with her I knew that she “got” me, my life, my son. I was so excited that I ended up going down there to speak more with her in person. She showed me around the centre where the after-school programs are held (most days; they also often go out on field trips) and I was amazed. They had a “sensory room” where kids could unwind. The room seemed like it was designed for him. Mats for rolling around on the floor while movies were projected onto the walls, a big comfy sofa with pillows and weighted blankets, a “bouncy chair” built for big kids, a giant lava lamp, and dimmer switches on the lights.

Example of a sensory room. Soft lighting, lots of soft textures, and other equipment for sensory therapy.

Example of a sensory room. Soft lighting, lots of soft textures, and other equipment for sensory therapy.

And this is where my not-so-surprising surprise comes in. My first thought when I walked into that room was that it was tailor-made for my son, and how did they know this was what he would need? Well of course they would, it’s a program for autistic kids! As we finished the tour I knew that this was a place where my son could finally feel like a “normal” kid – able to go hang out with a bunch of other kids, go on field trips, bake cookies in their large kitchen, build Lego, make forts, etc…but where everybody understood him, his needs, and treated it all like it was normal and acceptable to be who he was. And without his mother following him around, or being in the shadow of his big sister. I was thrilled when she told me there was still room in the after-school program and invited him to participate in that week’s outing to a local school gymnasium.

He couldn’t wait to go, and when I came to pick him up he didn’t want to go home. I was reminded of how he much loved preschool (it was a nightmare for the rest of us). I was thrilled for him. On the way home I asked him what we should call the program (saying “it’s time to go to after-school care” doesn’t sound right, especially since he doesn’t go to school) and he said “It’s like school, but without all the bullshit”. I had to laugh. I suppose in a way this is like school in that there is a group of kids and planned activities and adults who are there to help out. But nobody was pushing academics on him or forcing him to do things he couldn’t handle. So we decided to call it “Fun School”.

He’ll be going every Wednesday and then during Spring Break he will go for the whole week. By then he will be completely comfortable with the staff and the other kids, they will know him, and I feel great about all of it. They also run summer programs. I see this place as a whole new community having opened up for my boy and I am so happy for him. My goal for him was always to expand his world and this week we took a huge step in that direction.

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Categories: autism | Leave a comment

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