Here's the rule of thumb: your actions will reinforce or deter the behaviour which has happened in the last 3 seconds.
It sounds simple enough, until you start to think about it. It means that every reward or punishment must happen immediately or else a parent can end up reinforcing the wrong type of behaviour.
Here's a common example: the child has been asked to do something in exchange for a reward. The child completes the task and then asks for the reward. The parent gives the reward.
The behaviour that has been reinforced is asking for the reward. In order to reinforce completing the task, the reward needed to be given promptly at the end of the task.
On the flip side, the child has been asked to do something in exchange for a reward. The child begins to protest. The parent offers an alternative "more fun" way to do the task. The child completes the task, the parent gives the reward.
The parent has reinforced protesting and completing the task.
This is one reason why it is critical to have rewards and deterrents planned out in advance. Not only is it necessary for consistency, but there simply isn't the time to decide things in the moment.
This kind of thinking isn't intuitive and while it can help in neurotypical parenting, it isn't always as necessary once the child reaches an age where they can be reasoned with and things can be explained. There is a certain social understanding in neurotypical families, that the parent is giving some indulgence now but expects the child to toe the line later. In autism, the child can't understand that kind of social exchange. That's why it all has to be kept consistent.
Tuesday, 31 January 2017
Monday, 30 January 2017
Friday, 27 January 2017
The Mystery May Be Solved
So, after getting some more information, what we have been experiencing may have been an extinction burst related to stuff which has been going on at school.
Extinction bursts happen when you try to eliminate or change a behaviour. Any behaviour that a child (or really anyone) does on a regular basis is working for them in some way. A kid whose parents cave every time they throw a tantrum learns that throwing a tantrum is a pretty good way to get what they want. Even if it's only sometimes, that can be enough to reinforce the tantrum as a good thing to try.
So when parents change the environment and expectations to make a behaviour not work, the child doesn't automatically say "oh well, guess that doesn't work anymore." Instead he or she will escalate the behaviour to make it work again. So in the tantrum example, the kid may throw more tantrums or bigger tantrums (or both). That's the extinction burst.
This is where it gets tricky. If the parent gets worn out and caves, even once, the extinction burst will drag on and continue to escalate. So, as exhausting as it is, parents or teachers have to stand firm. The more consistent they are, the faster the behaviour will actually disappear.
There had been some confusion at school over what constituted "acknowledging" Alex's headbanging. When I told them not to acknowledge it at all, I meant to say that as far as teacher reactions go, they need to act as if it doesn't exist and it didn't happen. Instead, he was being told "Don't do that" which prompted him to begin using it for attention and led to an increase in the behaviour.
I'm hoping that we're back on track now. We've talked to them about not rewarding him for not head-banging (since that acknowledges the behaviour, instead we've suggested rewarding him for cheerful cooperation). We've asked them to make sure that substitutes and co-op students are aware not to say anything or intervene.
But the last few days have likely been an extinction burst where Alex was trying to get his head-banging to work again. I didn't consider that as I thought we'd gone through this process back in December but apparently not quite. If we are moving toward consistency, then hopefully it will all be over soon.
Extinction bursts happen when you try to eliminate or change a behaviour. Any behaviour that a child (or really anyone) does on a regular basis is working for them in some way. A kid whose parents cave every time they throw a tantrum learns that throwing a tantrum is a pretty good way to get what they want. Even if it's only sometimes, that can be enough to reinforce the tantrum as a good thing to try.
So when parents change the environment and expectations to make a behaviour not work, the child doesn't automatically say "oh well, guess that doesn't work anymore." Instead he or she will escalate the behaviour to make it work again. So in the tantrum example, the kid may throw more tantrums or bigger tantrums (or both). That's the extinction burst.
This is where it gets tricky. If the parent gets worn out and caves, even once, the extinction burst will drag on and continue to escalate. So, as exhausting as it is, parents or teachers have to stand firm. The more consistent they are, the faster the behaviour will actually disappear.
There had been some confusion at school over what constituted "acknowledging" Alex's headbanging. When I told them not to acknowledge it at all, I meant to say that as far as teacher reactions go, they need to act as if it doesn't exist and it didn't happen. Instead, he was being told "Don't do that" which prompted him to begin using it for attention and led to an increase in the behaviour.
I'm hoping that we're back on track now. We've talked to them about not rewarding him for not head-banging (since that acknowledges the behaviour, instead we've suggested rewarding him for cheerful cooperation). We've asked them to make sure that substitutes and co-op students are aware not to say anything or intervene.
But the last few days have likely been an extinction burst where Alex was trying to get his head-banging to work again. I didn't consider that as I thought we'd gone through this process back in December but apparently not quite. If we are moving toward consistency, then hopefully it will all be over soon.
Thursday, 26 January 2017
What the..? - A Sherlock Autism Mystery
Over the last few days, Alex's behaviour has drastically deteriorated. He's headbanging, bolting, whining, taking/doing things compulsively that he's not supposed to. It's at school and at home (but not, curiously, in the van).
My first thought is that something is bothering him, that perhaps he's getting sick. He can't always tell us when his head hurts or something like that. But there's no fever, no swollen glands and no other sign of illness. Giving him a painkiller doesn't make any difference.
Next thought, maybe something sensory bothering him. A buzzing light, a prickly clothing tag, a rough spot in his shoes, all of these have triggered behaviour bursts in the past. But I can't find any sign of something I know to be a trigger. So either it's a new trigger (unlikely and difficult to find or prove) or that's not it.
Okay, has there been a shift in his environment? This one is trickier because things are always changing and it's almost always a combination of things. His grandparents are away, he's due to have a substitute teacher today, we had a snow day on Tuesday... that doesn't seem like enough to trigger this level of problem but it can't be ruled out. It also can't be fixed, which makes this a useless conclusion.
Is he frustrated? He hasn't been earning rewards for behaviour or toileting lately. Rather than 3 screentimes, he's usually only earning one. And he hasn't had a successful BM in the toilet for over a month, meaning no trip to Montreal on the horizon. Again, not much I can do about that if this is the triggering problem. To be effective, the rewards have to be consistent. And the timing doesn't match up. If this was a gradually building up behaviour problem, then this would be a more likely answer, but it's really dropped out of the blue.
This is the challenge in figuring things out for Alex. Not only do we have to look at a wide variety of possible causes, but we also have to be careful to evaluate them realistically. It's like a differential diagnosis (for House fans). We can't just find what matches the symptoms, we also have to make sure that all of the expected symptoms for a particular cause are there before we make a diagnosis. And we need a diagnosis before making any changes or else we risk making the situation worse.
This particular Sherlock Holmes level mystery isn't presenting itself with any solutions as yet. And unlike in fiction, we may never know what the actual answer was.
My first thought is that something is bothering him, that perhaps he's getting sick. He can't always tell us when his head hurts or something like that. But there's no fever, no swollen glands and no other sign of illness. Giving him a painkiller doesn't make any difference.
Next thought, maybe something sensory bothering him. A buzzing light, a prickly clothing tag, a rough spot in his shoes, all of these have triggered behaviour bursts in the past. But I can't find any sign of something I know to be a trigger. So either it's a new trigger (unlikely and difficult to find or prove) or that's not it.
Okay, has there been a shift in his environment? This one is trickier because things are always changing and it's almost always a combination of things. His grandparents are away, he's due to have a substitute teacher today, we had a snow day on Tuesday... that doesn't seem like enough to trigger this level of problem but it can't be ruled out. It also can't be fixed, which makes this a useless conclusion.
Is he frustrated? He hasn't been earning rewards for behaviour or toileting lately. Rather than 3 screentimes, he's usually only earning one. And he hasn't had a successful BM in the toilet for over a month, meaning no trip to Montreal on the horizon. Again, not much I can do about that if this is the triggering problem. To be effective, the rewards have to be consistent. And the timing doesn't match up. If this was a gradually building up behaviour problem, then this would be a more likely answer, but it's really dropped out of the blue.
This is the challenge in figuring things out for Alex. Not only do we have to look at a wide variety of possible causes, but we also have to be careful to evaluate them realistically. It's like a differential diagnosis (for House fans). We can't just find what matches the symptoms, we also have to make sure that all of the expected symptoms for a particular cause are there before we make a diagnosis. And we need a diagnosis before making any changes or else we risk making the situation worse.
This particular Sherlock Holmes level mystery isn't presenting itself with any solutions as yet. And unlike in fiction, we may never know what the actual answer was.
Tuesday, 24 January 2017
Senator Tickets and Zamboni Dreams
We received a voucher for Sens tickets and a Zamboni ride. It was a tough call, since Alex only has another few months of being eligible and loves the Zamboni. But Nathan was promised the next ride and so he will get to sit on the side of the machine as it cleans the ice.
I've let them know that Alex would be quite excited to ride the Zamboni as well (should a ride open up at the last minute) but if he doesn't get to ride, then he can watch the Zamboni and Nathan. Hopefully we don't get a disaster, but I think we'll be okay. Alex likes watching the Zamboni, even though he'll probably be a little upset that Nathan goes.
I hope Nathan doesn't freak out or get anxious. I think it will be easier for him if he has something to "do" so I've suggested that he bring a sign that says "Go Sens Go!" The crowd will like it and respond, so that will encourage him.
I'll let you all know how it goes.
I've let them know that Alex would be quite excited to ride the Zamboni as well (should a ride open up at the last minute) but if he doesn't get to ride, then he can watch the Zamboni and Nathan. Hopefully we don't get a disaster, but I think we'll be okay. Alex likes watching the Zamboni, even though he'll probably be a little upset that Nathan goes.
I hope Nathan doesn't freak out or get anxious. I think it will be easier for him if he has something to "do" so I've suggested that he bring a sign that says "Go Sens Go!" The crowd will like it and respond, so that will encourage him.
I'll let you all know how it goes.
Monday, 23 January 2017
How Much Do I Intervene in Playdates?
We've been encouraging Nathan to invite friends over for playdates to improve his social connections. He finds the school yard intimidating, so we're working on building friendships on a one-on-one basis.
Yesterday, he had a playdate and I found myself sitting in the other room, pretending to read a book and supervise Alex, wondering if I should say something.
Nathan can be loud and he has difficulty sharing. He has a tendency to want to save the good and fun parts for himself (for example, when playing a video game with us, we have to remind him to let us have a turn at the uncovered treasure or reward. Or to let us solve problems on our own when he knows the solution). So when I could hear Nathan cheering but not his friend, I wondered if Nathan was doing the same.
But I stayed put, because it's also part of the playdate that I can't be jumping up to interfere every few minutes. Aside from the fact that it is embarassing for Nathan, it also highlights the problem in his friends' minds.
I did pull Nathan aside twice to remind him to let his friend make choices and not always push for what Nathan wanted to do. Because I want the playdate to be a success and the other kid to want to come back. But in the end, they sorted it out and seemed to have a good time.
Yesterday, he had a playdate and I found myself sitting in the other room, pretending to read a book and supervise Alex, wondering if I should say something.
Nathan can be loud and he has difficulty sharing. He has a tendency to want to save the good and fun parts for himself (for example, when playing a video game with us, we have to remind him to let us have a turn at the uncovered treasure or reward. Or to let us solve problems on our own when he knows the solution). So when I could hear Nathan cheering but not his friend, I wondered if Nathan was doing the same.
But I stayed put, because it's also part of the playdate that I can't be jumping up to interfere every few minutes. Aside from the fact that it is embarassing for Nathan, it also highlights the problem in his friends' minds.
I did pull Nathan aside twice to remind him to let his friend make choices and not always push for what Nathan wanted to do. Because I want the playdate to be a success and the other kid to want to come back. But in the end, they sorted it out and seemed to have a good time.
Friday, 20 January 2017
The Dangers of Comparisons
Earlier this week, I had dinner with my sister-in-law, who was saying that she likes checking out other people's homes during playdates, because if they're in worse shape than her, she feels better about herself as a parent. (I.e., she's not a horrible parent and her kids will probably be fine, a reassurance that all parents seek.) She then mentioned that she didn't like coming to my house because my kids listen better than hers.
I made the appropriate noises of reassurance, but it got me thinking. It's not the first time that my kids have been accused/praised of being well behaved in comparison with other kids their age.
Part of it is the consistency necessary for autism. We have to keep expectations constant in order to have a shot at learning. Whereas other kids get "breaks" in keeping good behaviour at home or in other socially appropriate circumstances, my kids wouldn't understand the context of those breaks. So we need to keep their behaviour at a constant level, and we've chosen to aim for a fairly responsible and well-behaved one.
We made that choice because we know that our kids will be at a social disadvantage, but inherent politeness will make up for a fair number of oddities. Someone who is rude and odd is ostracized a lot faster than someone who is polite and odd.
But that's only part of the picture. The other part is that while my sister-in-law might feel bad about how my children behave in comparison, I feel sad looking at my nieces and nephews, knowing that they are going to explore worlds that will probably remain closed to my kids. Their ability to grow up and do things like go to university, get jobs, find relationships, it's all a given, a matter of "how" rather than "if". They'll have chances to do crazy things like spend a year teaching English overseas or backpacking through Europe or Asia, or whatever else their minds come up with.
My kids will require more support and more shelter. Don't get me wrong, I still hope that they'll have long, happy and productive lives, but their type of life is going to be different from the vast majority of their peers.
The real message here is not to let yourself get caught up in comparisons. There will always be people who are worse off, who are better off, or whose appearance doesn't match their reality. Getting stuck in the emotional tides of "what if" distracts from the necessity of dealing with here and now.
I made the appropriate noises of reassurance, but it got me thinking. It's not the first time that my kids have been accused/praised of being well behaved in comparison with other kids their age.
Part of it is the consistency necessary for autism. We have to keep expectations constant in order to have a shot at learning. Whereas other kids get "breaks" in keeping good behaviour at home or in other socially appropriate circumstances, my kids wouldn't understand the context of those breaks. So we need to keep their behaviour at a constant level, and we've chosen to aim for a fairly responsible and well-behaved one.
We made that choice because we know that our kids will be at a social disadvantage, but inherent politeness will make up for a fair number of oddities. Someone who is rude and odd is ostracized a lot faster than someone who is polite and odd.
But that's only part of the picture. The other part is that while my sister-in-law might feel bad about how my children behave in comparison, I feel sad looking at my nieces and nephews, knowing that they are going to explore worlds that will probably remain closed to my kids. Their ability to grow up and do things like go to university, get jobs, find relationships, it's all a given, a matter of "how" rather than "if". They'll have chances to do crazy things like spend a year teaching English overseas or backpacking through Europe or Asia, or whatever else their minds come up with.
My kids will require more support and more shelter. Don't get me wrong, I still hope that they'll have long, happy and productive lives, but their type of life is going to be different from the vast majority of their peers.
The real message here is not to let yourself get caught up in comparisons. There will always be people who are worse off, who are better off, or whose appearance doesn't match their reality. Getting stuck in the emotional tides of "what if" distracts from the necessity of dealing with here and now.
Wednesday, 18 January 2017
I'm the Decider - A Nathan Quote
It's been awhile since I had one of these but yesterday, we got a good one.
I was going out with my mother-in-law and my sisters-in-law for our post Christmas dinner, so Dave was going to be handling the at-home dinner preparations. Nathan likes to check and see what's for dinner about an hour before.
Last night, he came over and asked: What's for supper, Mommy?
Me: I don't know. It's up to Daddy.
Nathan: Why?
Me: Because I'm going out, so Daddy is making supper. It's his decision.
Nathan: But what did you tell him to decide?
I was going out with my mother-in-law and my sisters-in-law for our post Christmas dinner, so Dave was going to be handling the at-home dinner preparations. Nathan likes to check and see what's for dinner about an hour before.
Last night, he came over and asked: What's for supper, Mommy?
Me: I don't know. It's up to Daddy.
Nathan: Why?
Me: Because I'm going out, so Daddy is making supper. It's his decision.
Nathan: But what did you tell him to decide?
Tuesday, 17 January 2017
Holland Analogy
When I speak to new parents who are overwhelmed with their child's diagnosis of autism, I often share the Holland analogy. I first heard it when Alex was diagnosed and it's always struck me as particular apt.
Having a child with autism is like boarding a plane for Italy and landing in Holland.
It's glib, but when you think about it, it makes sense. The parenting books and magazines are all about neurotypical children. Using them to deal with your child with autism is about as effective as using a map of Rome to navigate Amsterdam. Both places have roads and buildings and places you want to get to, but that's really where the similarities end.
When you don't know your child has autism, it's baffling. The advice never quite seems to work as expected and yet, people keep telling you that either you've done the technique wrong or you haven't tried hard enough. We were told that we should be patient and Alex would begin eating solid food if we let him get hungry enough. Which is probably true of most neurotypical toddlers, but for a child with sensory issues, it doesn't matter how hungry they are. The food was genuinely intolerable and needed almost six years of daily therapy work to overcome the aversion.
So, here parents are, standing in Holland, trying to use their Italian phrasebooks and searching for the statues and art collections, getting more and more frustrated with each passing day. A sense of helplessness and hopelessness grows.
When they receive the diagnosis, that's when things start to change. They begin to be told what needs to be done for their child, in effect, getting the maps and guidebooks for Holland. All of a sudden, things start to work again. It's still difficult because parenting a child with autism is an extra level of challenge. But it's so much easier than it was before the diagnosis. Things begin to make sense again.
I know some families don't like the Holland analogy because they feel that it creates too large a divide between raising neurotypical children (which is still hard) and children with autism. Respectfully, I disagree. The world may not be entirely family-friendly, but it is set up to deal with neurotypical children. Kids who can handle changes in schedule without tantrums, who can communicate easily, who can learn social skills without expressly being taught, and who don't need the kind of everyday support that a child with autism does. Parents whose children have autism are effectively in a different country than everyone else.
I've known that I'm in Holland for over ten years now. I've got a fairly good grasp on how autism affects both of my boys and can usually come up with some kind of solution to their challenges. I still need a lot of help and I still end up exhausted and discouraged on more days than I like to realize. And I still look at my friends and colleagues who have neurotypical children and envy them for their Italian lifestyle. But it is much better than those horrible two and a half years where I was living in Holland and trying to make it work in Italian.
Having a child with autism is like boarding a plane for Italy and landing in Holland.
It's glib, but when you think about it, it makes sense. The parenting books and magazines are all about neurotypical children. Using them to deal with your child with autism is about as effective as using a map of Rome to navigate Amsterdam. Both places have roads and buildings and places you want to get to, but that's really where the similarities end.
When you don't know your child has autism, it's baffling. The advice never quite seems to work as expected and yet, people keep telling you that either you've done the technique wrong or you haven't tried hard enough. We were told that we should be patient and Alex would begin eating solid food if we let him get hungry enough. Which is probably true of most neurotypical toddlers, but for a child with sensory issues, it doesn't matter how hungry they are. The food was genuinely intolerable and needed almost six years of daily therapy work to overcome the aversion.
So, here parents are, standing in Holland, trying to use their Italian phrasebooks and searching for the statues and art collections, getting more and more frustrated with each passing day. A sense of helplessness and hopelessness grows.
When they receive the diagnosis, that's when things start to change. They begin to be told what needs to be done for their child, in effect, getting the maps and guidebooks for Holland. All of a sudden, things start to work again. It's still difficult because parenting a child with autism is an extra level of challenge. But it's so much easier than it was before the diagnosis. Things begin to make sense again.
I know some families don't like the Holland analogy because they feel that it creates too large a divide between raising neurotypical children (which is still hard) and children with autism. Respectfully, I disagree. The world may not be entirely family-friendly, but it is set up to deal with neurotypical children. Kids who can handle changes in schedule without tantrums, who can communicate easily, who can learn social skills without expressly being taught, and who don't need the kind of everyday support that a child with autism does. Parents whose children have autism are effectively in a different country than everyone else.
I've known that I'm in Holland for over ten years now. I've got a fairly good grasp on how autism affects both of my boys and can usually come up with some kind of solution to their challenges. I still need a lot of help and I still end up exhausted and discouraged on more days than I like to realize. And I still look at my friends and colleagues who have neurotypical children and envy them for their Italian lifestyle. But it is much better than those horrible two and a half years where I was living in Holland and trying to make it work in Italian.
Monday, 16 January 2017
Music of the 80s with Alex at the NAC
On Friday, I took Alex to the NAC to see the orchestra perform music of the 80s. I'd been looking for something suitable in their catalogue for awhile. Alex likes music, especially live music, and he's a big fan of 80's and 90's pop music, but it's hard to predict what will be overwhelming to him. So I needed something inexpensive for our first try, in case we had to bail in the first ten minutes.
It went really well. Alex enjoyed the show and stayed in his seat. We had quiet singing which didn't disturb the people around us but still let him participate.
I did a lot of preparation to make sure it went smoothly. We started with sharing pictures of concerts and listing out appropriate behaviour (quiet voice, stay in seat). I put the concert on his visual schedule to gauge if it was a dreaded or anticipated event.
I brought his iPad and headphones with me (both music and noise suppression), so that if we had to wait in our seats for awhile, he'd have something to do. (We ended up getting in literally as they dimmed the house lights for the concert, so that wasn't necessary but I was prepared.) I had a big tupperware full of gummi bears which I doled out during the concert as a reward for sitting quietly and paying attention. (One every two minutes during talky bits and one every five minutes during the music.) I also brought a waterbottle for him. He had a small toy (Elmo) and I wore his favourite fidget bracelet (beads on an elasticized band).
The lady next to us had binoculars and Alex rolled up his program like a telescope, looking through it at the stage. I let him toy with the bracelet or Elmo throughout the concert, giving him a quiet way to stay occupied. I sang quietly, directly into his ear, when he asked. He didn't end up needing the noise suppression headphones, though he did wear his Elmo hat the entire time. I stayed in physical contact through the whole concert, squeezes, backrubs, holding his hand. Again, I think the pressure and contact helped him to stay centred (as well as giving me warning if he was starting to get agitated).
In all, I think it was a big success and gives me a formula that I can adapt for other events that he might like.
It went really well. Alex enjoyed the show and stayed in his seat. We had quiet singing which didn't disturb the people around us but still let him participate.
I did a lot of preparation to make sure it went smoothly. We started with sharing pictures of concerts and listing out appropriate behaviour (quiet voice, stay in seat). I put the concert on his visual schedule to gauge if it was a dreaded or anticipated event.
I brought his iPad and headphones with me (both music and noise suppression), so that if we had to wait in our seats for awhile, he'd have something to do. (We ended up getting in literally as they dimmed the house lights for the concert, so that wasn't necessary but I was prepared.) I had a big tupperware full of gummi bears which I doled out during the concert as a reward for sitting quietly and paying attention. (One every two minutes during talky bits and one every five minutes during the music.) I also brought a waterbottle for him. He had a small toy (Elmo) and I wore his favourite fidget bracelet (beads on an elasticized band).
The lady next to us had binoculars and Alex rolled up his program like a telescope, looking through it at the stage. I let him toy with the bracelet or Elmo throughout the concert, giving him a quiet way to stay occupied. I sang quietly, directly into his ear, when he asked. He didn't end up needing the noise suppression headphones, though he did wear his Elmo hat the entire time. I stayed in physical contact through the whole concert, squeezes, backrubs, holding his hand. Again, I think the pressure and contact helped him to stay centred (as well as giving me warning if he was starting to get agitated).
In all, I think it was a big success and gives me a formula that I can adapt for other events that he might like.
Friday, 13 January 2017
Asking For Help
I don't like asking for help. I'm not so foolish as to believe I don't need it, but it stings in my pride.
Yesterday, I interviewed a lovely pair of ladies who offer help to families. They've agreed to help me with running errands, maintaining the house and keeping up with the daily chores. It's going to be expensive but I don't see a choice.
The thing is, I'm humiliated with how my home looks. As in, break down and cry because I'm so embarrassed that it's gotten this bad. I feel like a "before" shot in an intervention show. Dishes don't get done, laundry piles up, I'm stretching out food because groceries aren't getting done, caches of toys scattered all over the house, the garbage and recycling filled to overflowing.
Part of this is because Dave and I have been overwhelmed over the last few months and things have slid. But part of it is because I don't have the energy to keep up with all of it. (I won't speak to Dave's feelings, but I suspect he feels the same.) When one of us drops the ball, the other doesn't have the energy to pick it up.
The stress of not knowing whether or not things will get done has been very difficult for me. I need predictability. Uncertainty throws me for a loop and I don't cope well with it. I start getting obsessed with making contingency plan after contingency plan. My health, both mental and physical, has been breaking down as things stay in limbo, so I needed to act.
But I also need to keep my expectations realistic. This is not going to solve things and make it all magically better. It's going to take care of one specific problem, provided I utilize the help properly.
Yesterday, I interviewed a lovely pair of ladies who offer help to families. They've agreed to help me with running errands, maintaining the house and keeping up with the daily chores. It's going to be expensive but I don't see a choice.
The thing is, I'm humiliated with how my home looks. As in, break down and cry because I'm so embarrassed that it's gotten this bad. I feel like a "before" shot in an intervention show. Dishes don't get done, laundry piles up, I'm stretching out food because groceries aren't getting done, caches of toys scattered all over the house, the garbage and recycling filled to overflowing.
Part of this is because Dave and I have been overwhelmed over the last few months and things have slid. But part of it is because I don't have the energy to keep up with all of it. (I won't speak to Dave's feelings, but I suspect he feels the same.) When one of us drops the ball, the other doesn't have the energy to pick it up.
The stress of not knowing whether or not things will get done has been very difficult for me. I need predictability. Uncertainty throws me for a loop and I don't cope well with it. I start getting obsessed with making contingency plan after contingency plan. My health, both mental and physical, has been breaking down as things stay in limbo, so I needed to act.
But I also need to keep my expectations realistic. This is not going to solve things and make it all magically better. It's going to take care of one specific problem, provided I utilize the help properly.
Thursday, 12 January 2017
Autism and Pride and Prejudice
Yesterday, someone commented that it had been awhile since anyone did a remake of Pride and Prejudice and was asking for suggestions for actors to play Elizabeth Bennett and Mr. Darcy. I couldn't think of any, but it got me thinking about the plot.
The Bennett sisters are considered unsuitable marriage material, in part because of their poverty, but mainly because their family doesn't conform to social expectations. All five daughters are out in society at once (rather than one at a time per the Victorian norm), they don't stick to appropriate topics of conversation, they speak their minds frankly, they flirt and don't guard their reputations.
As readers we root for the social rebel. But in real life, society reacts the exact same way that it does in Pride and Prejudice, with a withdrawal and third party condemnation. (By which I mean that everyone talks to each other about what a horrible situation the Bennetts are in but it's considered inappropriate to speak to them directly about it.)
It got me thinking about autism (as so many things do). There's a parallel there, trying to navigate a world with arbitrary and unspoken rules that are unevenly applied. In the Victorian age, the more wealth or status a family has, the more eccentricities are permitted. Because the Bennetts are relatively poor, they must be above reproach. In modern times, social rules are just as difficult to figure out. They aren't logical, or consistent, which makes them baffling to all of us, but particularly to those with autism.
But it doesn't matter whether or not a person understands the rules. They are penalized for breaking them regardless of being aware of them. Elizabeth Bennett realizes that her parents' decision not to curb their daughters has severely penalized their chance at a future (not realizing that it also made them interesting). The daughters are punished for the failures of the parent. Those with autism may be equally unaware of having violated a social norm, but they still face society's punishment for having done so. And they often recognize that people are upset and withdrawing, but they can't figure out why.
In a way, this underscores the challenge that parents of autistic children face. Where is the balancing line between having them conform to society's expectations and allowing the child's own personality and interests to dictate their actions? As much as people can thunder that society should accept the non-neurotypical, the reality is that people will only accept so much deviance in a given situation. But that point will vary from person to person and situation to situation, leaving no easy answers. If the parent doesn't curb, the child's future happiness is at risk. Too much curb, and the uniqueness of that child is sacrificed.
The Bennett sisters are considered unsuitable marriage material, in part because of their poverty, but mainly because their family doesn't conform to social expectations. All five daughters are out in society at once (rather than one at a time per the Victorian norm), they don't stick to appropriate topics of conversation, they speak their minds frankly, they flirt and don't guard their reputations.
As readers we root for the social rebel. But in real life, society reacts the exact same way that it does in Pride and Prejudice, with a withdrawal and third party condemnation. (By which I mean that everyone talks to each other about what a horrible situation the Bennetts are in but it's considered inappropriate to speak to them directly about it.)
It got me thinking about autism (as so many things do). There's a parallel there, trying to navigate a world with arbitrary and unspoken rules that are unevenly applied. In the Victorian age, the more wealth or status a family has, the more eccentricities are permitted. Because the Bennetts are relatively poor, they must be above reproach. In modern times, social rules are just as difficult to figure out. They aren't logical, or consistent, which makes them baffling to all of us, but particularly to those with autism.
But it doesn't matter whether or not a person understands the rules. They are penalized for breaking them regardless of being aware of them. Elizabeth Bennett realizes that her parents' decision not to curb their daughters has severely penalized their chance at a future (not realizing that it also made them interesting). The daughters are punished for the failures of the parent. Those with autism may be equally unaware of having violated a social norm, but they still face society's punishment for having done so. And they often recognize that people are upset and withdrawing, but they can't figure out why.
In a way, this underscores the challenge that parents of autistic children face. Where is the balancing line between having them conform to society's expectations and allowing the child's own personality and interests to dictate their actions? As much as people can thunder that society should accept the non-neurotypical, the reality is that people will only accept so much deviance in a given situation. But that point will vary from person to person and situation to situation, leaving no easy answers. If the parent doesn't curb, the child's future happiness is at risk. Too much curb, and the uniqueness of that child is sacrificed.
Wednesday, 11 January 2017
Screen Time Test: Failed
Yesterday, we gave Nathan the option of having a second half hour screen time while his sitter was here. We put some strict guidelines on it: it had to be before bed and he couldn't tantrum. I was curious to see whether or not he could manage more than the one screen time that we currently allow him.
The answer to that question was no.
He did fairly well in the lead up, proving how strong a motivator screen time is for him. But then when his sitter told him that it was time to turn off the screen and go to bed: there was a tantrum.
It's disappointing but not unpredictable. Something about the screen leaves Nathan unable to regulate himself. So unfortunately, the answer is to restrict the amount of screen time. And that's not something I see changing for the foreseeable future.
The answer to that question was no.
He did fairly well in the lead up, proving how strong a motivator screen time is for him. But then when his sitter told him that it was time to turn off the screen and go to bed: there was a tantrum.
It's disappointing but not unpredictable. Something about the screen leaves Nathan unable to regulate himself. So unfortunately, the answer is to restrict the amount of screen time. And that's not something I see changing for the foreseeable future.
Tuesday, 10 January 2017
First Day Back: A Review
Not bad but not a catastrophe either.
Alex apparently did well for the morning but then had a major meltdown in the second half of the afternoon. We're keeping him on the higher dose of his medication for at least this week. Hopefully he gets used to the routine.
Nathan had a good day. His teacher is out sick but sent us a quick note to let us know that he'd forgotten to finish a homework assignment from November. We'll work on it this week.
I enjoyed the peace and quiet of having the house to myself but it was a little jarring to be back on a strict schedule. We'll get used to it.
Alex apparently did well for the morning but then had a major meltdown in the second half of the afternoon. We're keeping him on the higher dose of his medication for at least this week. Hopefully he gets used to the routine.
Nathan had a good day. His teacher is out sick but sent us a quick note to let us know that he'd forgotten to finish a homework assignment from November. We'll work on it this week.
I enjoyed the peace and quiet of having the house to myself but it was a little jarring to be back on a strict schedule. We'll get used to it.
Monday, 9 January 2017
We Help Lots of People... But Not You
Over the last eleven years, it feels like we've had a lot of doors slammed in our faces. There are tons of places that promise to help families with special needs and yet it seems as if we somehow keep falling into exemptions.
Love to help, but your family earns too much money. (This is the most popular one)
I'm afraid that we only support families who are currently receiving full-time IBI for two or more children.
That sounds like a rough situation, but we only support single-parent families.
We only help if families in significant arrears on their mortgage or utilities.
If you're still managing to work, you're not in crisis.
I know we had a two-year waitlist but because you did private services, you can't qualify for help with us.
And today, the meeting with Service Coordination about applying for crisis funding: apparently we're not crisis-y enough and while they might be able to shell out funding for me to hire a therapist to come to the home**, they will not support funding a housekeeper so that I can concentrate on helping Alex and Nathan. They said we had too much of a support network already in place for the boys to qualify as being in crisis.
I know why. It's because the people who assign/donate the money would assume that the parents weren't doing the work and were simply laughing it up at the government/donator's expense. Because a parent can't possibly be honest or helpful.
Here's the thing. Our family has always been fiscally responsible. When Dave and I were looking to buy a house, we spent five years saving a significant down payment. We had a plan which likely would have seen us mortgage-free at fifteen years. We saved to buy our cars rather than debt-financing them. And then the diagnoses hit.
We pulled money from our equity to cover therapy because our income was "too high". We lowered our monthly mortgage payments to the minimum to cover the costs of full-time aides. We swallowed our pride and accepted financial help from friends and family because every single service we looked at turned us down because we were too responsible.
If we'd lived above our means and had half-a-million in debt, we'd qualify for help. If I'd divorced my husband, we'd qualify for help. If one of us was addicted to drugs, or we were under investigation by CAS or any of a dozen other horrible things, we'd qualify for help. But apparently, no one wants to help someone who has tried to do the right thing all along, but gotten hit by difficult circumstances and who needs temporary help to get things back into a place where we can cope. That's just not a "sexy" situation to support.
I am really tired of getting hit with the "it's not bad enough" tune. I don't ask for help often. The last time was when Dave had cancer and was going to be kept in isolation for several weeks. And I asked for short term funding to help cover the costs of the extra hours I was going to have to ask the aides to work. And we got the same damn message then.
I'm not looking to play the system or get stuff I'm not entitled to. I'm looking for help so that the hole can stop getting deeper. I'm not even asking for help crawling out of the hole. I just want to keep it from plunging to the next horrible level. But that's not good enough because apparently, I've tried too hard on my own.
** A note on the practicality of hiring a therapist vs a housekeeper. A trained therapist would be $ 60-70 per hour and take a minimum of 3 months to set up, assuming I found one which was available today. A respite worker would be $25-$30 per hour, require 4-5 hours daily to cover the necessary time and would take a minimum of 6-8 weeks to train in the proper protocols, again, assuming I could find anyone. The housekeeper will be $20-25 per hour, require 6 hours per week to manage the necessary work, and can start helping almost immediately. Oh, and additional fun fact: I would need to have the therapist ready to go and committed to, but they won't guarantee or commit to any funding. Not cool, people.
Love to help, but your family earns too much money. (This is the most popular one)
I'm afraid that we only support families who are currently receiving full-time IBI for two or more children.
That sounds like a rough situation, but we only support single-parent families.
We only help if families in significant arrears on their mortgage or utilities.
If you're still managing to work, you're not in crisis.
I know we had a two-year waitlist but because you did private services, you can't qualify for help with us.
And today, the meeting with Service Coordination about applying for crisis funding: apparently we're not crisis-y enough and while they might be able to shell out funding for me to hire a therapist to come to the home**, they will not support funding a housekeeper so that I can concentrate on helping Alex and Nathan. They said we had too much of a support network already in place for the boys to qualify as being in crisis.
I know why. It's because the people who assign/donate the money would assume that the parents weren't doing the work and were simply laughing it up at the government/donator's expense. Because a parent can't possibly be honest or helpful.
Here's the thing. Our family has always been fiscally responsible. When Dave and I were looking to buy a house, we spent five years saving a significant down payment. We had a plan which likely would have seen us mortgage-free at fifteen years. We saved to buy our cars rather than debt-financing them. And then the diagnoses hit.
We pulled money from our equity to cover therapy because our income was "too high". We lowered our monthly mortgage payments to the minimum to cover the costs of full-time aides. We swallowed our pride and accepted financial help from friends and family because every single service we looked at turned us down because we were too responsible.
If we'd lived above our means and had half-a-million in debt, we'd qualify for help. If I'd divorced my husband, we'd qualify for help. If one of us was addicted to drugs, or we were under investigation by CAS or any of a dozen other horrible things, we'd qualify for help. But apparently, no one wants to help someone who has tried to do the right thing all along, but gotten hit by difficult circumstances and who needs temporary help to get things back into a place where we can cope. That's just not a "sexy" situation to support.
I am really tired of getting hit with the "it's not bad enough" tune. I don't ask for help often. The last time was when Dave had cancer and was going to be kept in isolation for several weeks. And I asked for short term funding to help cover the costs of the extra hours I was going to have to ask the aides to work. And we got the same damn message then.
I'm not looking to play the system or get stuff I'm not entitled to. I'm looking for help so that the hole can stop getting deeper. I'm not even asking for help crawling out of the hole. I just want to keep it from plunging to the next horrible level. But that's not good enough because apparently, I've tried too hard on my own.
** A note on the practicality of hiring a therapist vs a housekeeper. A trained therapist would be $ 60-70 per hour and take a minimum of 3 months to set up, assuming I found one which was available today. A respite worker would be $25-$30 per hour, require 4-5 hours daily to cover the necessary time and would take a minimum of 6-8 weeks to train in the proper protocols, again, assuming I could find anyone. The housekeeper will be $20-25 per hour, require 6 hours per week to manage the necessary work, and can start helping almost immediately. Oh, and additional fun fact: I would need to have the therapist ready to go and committed to, but they won't guarantee or commit to any funding. Not cool, people.
Friday, 6 January 2017
Dealing With Fear of the Unknown
Nathan has been showing more anxiety these days, particularly over trying new experiences. Unfortunately, the term "new" can now apply to anything outside of the regular routine, even if he's done it before.
I've worked very hard to encourage my boys to listen to their feelings, and that those feelings will be respected when they're shared. But from my own experience, I also know how easy it is to be overwhelmed by fear and how quickly it can rule all decisions. So this has put me in a bit of a quandary.
I've adopted a multi-part response to Nathan's declarations that he's not going to do something. He usually begins by being angry, so I usually have to start with what is and isn't an appropriate way to express that anger.
Once he's through the initial tantrum, then I press him to tell me why he's upset at whatever we've planned. I usually get a bunch of answers like "I hate" or "it's stupid" or such. It takes awhile to boil down to what the real problem is: that he doesn't want to do it because it's new and/or he's worried.
I'll usually let it alone after that. I'll thank him for telling me and let him go back to his day. But I'll bring it up again at a later time (usually bedtime or a post-meal). I find he needs a break or else the whole cycle just starts over again. I talk about why fear is a tricky feeling who doesn't always tell us the truth and how the only way to stop being afraid is to go ahead and do what scares us. I talk about how he will miss out on a lot of fun stuff if he lets being afraid stop him. Then I usually drop the bomb that he is expected to participate anyway, despite being afraid. It provokes a lesser tantrum but usually it's much easier to control.
The final step is yet another conversation, one where I offer the opportunity for sharing and compromise. If Nathan can tell me something specific that bothers him, then we work on finding a way to avoid or deal with that specific thing. If he can come up with a suitable alternative for the activity, then I'll consider that.
I think this is a fair compromise between pushing him to overcome his fear and still respecting his feelings. But it's a long process and means we need to have a couple of days lead time between the first tantrum and the activity.
I've worked very hard to encourage my boys to listen to their feelings, and that those feelings will be respected when they're shared. But from my own experience, I also know how easy it is to be overwhelmed by fear and how quickly it can rule all decisions. So this has put me in a bit of a quandary.
I've adopted a multi-part response to Nathan's declarations that he's not going to do something. He usually begins by being angry, so I usually have to start with what is and isn't an appropriate way to express that anger.
Once he's through the initial tantrum, then I press him to tell me why he's upset at whatever we've planned. I usually get a bunch of answers like "I hate
I'll usually let it alone after that. I'll thank him for telling me and let him go back to his day. But I'll bring it up again at a later time (usually bedtime or a post-meal). I find he needs a break or else the whole cycle just starts over again. I talk about why fear is a tricky feeling who doesn't always tell us the truth and how the only way to stop being afraid is to go ahead and do what scares us. I talk about how he will miss out on a lot of fun stuff if he lets being afraid stop him. Then I usually drop the bomb that he is expected to participate anyway, despite being afraid. It provokes a lesser tantrum but usually it's much easier to control.
The final step is yet another conversation, one where I offer the opportunity for sharing and compromise. If Nathan can tell me something specific that bothers him, then we work on finding a way to avoid or deal with that specific thing. If he can come up with a suitable alternative for the activity, then I'll consider that.
I think this is a fair compromise between pushing him to overcome his fear and still respecting his feelings. But it's a long process and means we need to have a couple of days lead time between the first tantrum and the activity.
Wednesday, 4 January 2017
Broken Trust
Alex needs supervision. That's a given. But lately, he's been actively getting into lots of things that he knows he shouldn't.
Yesterday, Nathan had a massive tantrum. I had to unlock my room to get a bin for toy confiscation. While I was in Nathan's room, Alex snuck in to mine and grabbed a bunch of our collectibles. I found him (one thing he doesn't do is hide what he's done) and took the collectibles back. While I was doing that, he turned off my computer, destroying the work I'd been doing.
That was all in the space of less than ten minutes.
This morning, while I was making him breakfast, he broke into my room again. Over the last week, he's gotten hold of our keys and used them to get into the toy storage in the basement. He's taken things and hidden them. He's gone after the washing machine, the microwave, the alarm system, anything with a button that beeps when you push it. I feel as if I literally can't do anything but sit there and watch him.
And this isn't a matter of him showing some kind of understanding (trying to sneak and hide shows social awareness). In fact, I think this demonstrates just how low his understanding actually is. He doesn't care that this stuff gets him into trouble. He has opportunities and he takes them, with complete disregard of the consequences. He's aware that I will stop him if I can, so he takes advantage of my divided attention. That's not social awareness. Dogs and cats do the same thing when they sneak food from an unattended plate.
I'm trying hard not to yell at him when he does these things. But my frustration level is high and I'm really worried about what will happen tomorrow. The cleaners are coming, which means stuff has to stay tidied away. I also have to work, which means I can't be chasing after him. If I try to make Alex stay with me, I provoke a massive tantrum. If I let him go, I invite disaster. It's yet another example of the no-win scenario that feels as if it's taken over my life.
Yesterday, Nathan had a massive tantrum. I had to unlock my room to get a bin for toy confiscation. While I was in Nathan's room, Alex snuck in to mine and grabbed a bunch of our collectibles. I found him (one thing he doesn't do is hide what he's done) and took the collectibles back. While I was doing that, he turned off my computer, destroying the work I'd been doing.
That was all in the space of less than ten minutes.
This morning, while I was making him breakfast, he broke into my room again. Over the last week, he's gotten hold of our keys and used them to get into the toy storage in the basement. He's taken things and hidden them. He's gone after the washing machine, the microwave, the alarm system, anything with a button that beeps when you push it. I feel as if I literally can't do anything but sit there and watch him.
And this isn't a matter of him showing some kind of understanding (trying to sneak and hide shows social awareness). In fact, I think this demonstrates just how low his understanding actually is. He doesn't care that this stuff gets him into trouble. He has opportunities and he takes them, with complete disregard of the consequences. He's aware that I will stop him if I can, so he takes advantage of my divided attention. That's not social awareness. Dogs and cats do the same thing when they sneak food from an unattended plate.
I'm trying hard not to yell at him when he does these things. But my frustration level is high and I'm really worried about what will happen tomorrow. The cleaners are coming, which means stuff has to stay tidied away. I also have to work, which means I can't be chasing after him. If I try to make Alex stay with me, I provoke a massive tantrum. If I let him go, I invite disaster. It's yet another example of the no-win scenario that feels as if it's taken over my life.
Tuesday, 3 January 2017
Happy New Year
Another holiday season survived. There's still this week to get through before the kids go back to school but I'm hoping that goes relatively smoothly.
It's been a roller-coaster. Nathan's big present this year was Lego Dimensions (a video game) but he's been having such trouble with his temper that we've had to restrict him to one half hour of screen time per day and there were a number of days he didn't earn it. I feel bad that he hasn't gotten to enjoy his present the way he would have liked but we pay for it too much otherwise.
Alex had a rough week with several toileting accidents. We had to carry a bag of extra clothes with us, the first time we've had to do that in a long time. Hopefully that gets back to normal as well. His big gift was a new microphone and stand which he's been using in the basement.
I made a difficult decision. I'm going to pursue applying for crisis funding to get some additional help in the house. The constant uncertainty of whether or not things will get done is definitely affecting me.
I'll be honest and say that this has been a difficult season for me. I faked it for the kids, so they could have their usual magic time. But for me, it couldn't be over quickly enough. I'm looking forward to getting the decorations down and the presents put away this week. I want to get back to something resembling normal with minimal expectations.
It's been a roller-coaster. Nathan's big present this year was Lego Dimensions (a video game) but he's been having such trouble with his temper that we've had to restrict him to one half hour of screen time per day and there were a number of days he didn't earn it. I feel bad that he hasn't gotten to enjoy his present the way he would have liked but we pay for it too much otherwise.
Alex had a rough week with several toileting accidents. We had to carry a bag of extra clothes with us, the first time we've had to do that in a long time. Hopefully that gets back to normal as well. His big gift was a new microphone and stand which he's been using in the basement.
I made a difficult decision. I'm going to pursue applying for crisis funding to get some additional help in the house. The constant uncertainty of whether or not things will get done is definitely affecting me.
I'll be honest and say that this has been a difficult season for me. I faked it for the kids, so they could have their usual magic time. But for me, it couldn't be over quickly enough. I'm looking forward to getting the decorations down and the presents put away this week. I want to get back to something resembling normal with minimal expectations.
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