Next week, the much anticipated (at least in this house), Captain America: Civil War comes out in theatres.
Nathan is a huge Marvel/Avenger fan and has been begging to go see the movie in theatres. On the other hand, he is also only 9. I've been avidly avoiding spoilers for Civil War, but the comic dealt with some very serious issues of group safety vs personal safety and the role of government and protection vs freedom. Issues that are somewhat above the head of a certain enthusiastic little fan who lives in this house.
I am sure there will be plenty of action sequences but there have also been hints that this will be a darker film than Marvel typically does. (Again! Trying not to see spoilers!)
Obvious answer: I go see the film first, judge its appropriateness, and then decide if Nathan can see it.
Not-so-obvious problem with that: Can I set up the expectations so that I don't deal with massive disappointment if I need to say no? Probably not. On the other hand, no is guaranteed to be a massive disappointment regardless, so perhaps I'm overthinking that.
Some comic book movies were easy to say no to, despite Nathan's requests. Batman vs Superman, no. Deadpool, heck no. Any of the Wolverine movies... come back and talk to me in a year or so, kid.
I have let him see Guardians of the Galaxy and both Avengers movies, as well as the first two Spider-man movies with Tobey MacGuire. We tried the Incredible Hulk and Thor, but he got bored with them. The Iron-Man trilogy has been stuck on the same shelf as the Wolverine movies, just a little too violent for me to be entirely comfortable with showing it to him.
As a proud mama geek, I want to share the stories that I love with him. On the other hand, I only have to look to my own scarred memories of watching ET to know the problems of showing kids films before they're developmentally ready to handle them. Sharing the comics or novelizations is one thing, seeing it live on a twenty foot tall screen makes it very hard to ignore.
Friday 29 April 2016
Thursday 28 April 2016
Breaking the Complaining Cycle
Lately Alex seems to have forgotten that complaining after every instruction brings consequences. We worked very hard on this for about a year as just about every time we asked Alex to do something, he would reply "no " and then begin to whine. It got very frustrating (as well as being something which would cause a lot of problems long term).
We stopped it by having him earn screentime through non-complaining compliance. He needed to do what was asked without complaining or else he didn't earn his reward.
With the toileting work we've been doing over the last few months, Alex started earning a lot of rewards regardless of how well or poorly he complied. This has led to a new outbreak of complaining. Once again, we are subjected to constant "no" regardless of whether or not the instruction was actually directed at Alex.
I could say to Dave: It's sunny out.
Alex: No sunny out.
It's not socially appropriate behaviour and so we've got to work on it. Since we've removed screentime as a reward for toileting, it's getting tied to compliance again. Things will get worse for awhile as he tries to get us to give up on our standards, but hopefully he will come around again. Meanwhile, we are dealing with a lot of tantrums.
We stopped it by having him earn screentime through non-complaining compliance. He needed to do what was asked without complaining or else he didn't earn his reward.
With the toileting work we've been doing over the last few months, Alex started earning a lot of rewards regardless of how well or poorly he complied. This has led to a new outbreak of complaining. Once again, we are subjected to constant "no
I could say to Dave: It's sunny out.
Alex: No sunny out.
It's not socially appropriate behaviour and so we've got to work on it. Since we've removed screentime as a reward for toileting, it's getting tied to compliance again. Things will get worse for awhile as he tries to get us to give up on our standards, but hopefully he will come around again. Meanwhile, we are dealing with a lot of tantrums.
Wednesday 27 April 2016
New Study Looking to Redefine Autism
Dr. Evdokia Anagnostou, at Toronto Holland Bloorview Kids Rehabilitation Hospital, thinks we may have been approaching autism, ADHD and OCD from the wrong direction. After working with autistic children for most of her career, Dr. Anagnostou wants a more comprehensive understanding of how the disorder works so that families and doctors are able to figure out which treatments are most effective for different aspects of autism.
Dr. Anagnostou points out that autism has an incredibly wide range of symptoms and those with autism often also have ADHD, OCD or intellectual disabilities. By keeping each condition separate as a diagnosis, it may be preventing us from a greater understanding. Anagnostou uses the example of a child with autism with sensory sensitivities and a child with ADHD with social challenges, both will be easily distracted and have difficulty interpreting social signals but may be receiving entirely different treatments for their challenges. By refusing to be locked in to previous definitions, Anagnostou hopes that this study will yield new insights.
One of her frustrations is that treatment methods of children with autism are rarely something which can be scaled up and be useful for the entire autism population. Often the treatments are only effective for a particular subset, leaving the rest of the population looking for other answers. This led her to thinking that perhaps the way we've understood the disorder has been in error. She uses the example of sorting things by one attribute, placing grasshoppers, kangaroos and frogs into the category of "things that hop". Although perfectly valid, if one then tried to understand the animals in relation to one another, a researcher would grow quickly frustrated at the apparent differences.
For those who are alarmed, Anagnostou hastens to reassure that autism is a real disorder with real symptoms. She is not attempting to remove the diagnosis but to come to a greater understanding of it, one which would allow for more accurate help and support.
Dr. Anagnostou points out that autism has an incredibly wide range of symptoms and those with autism often also have ADHD, OCD or intellectual disabilities. By keeping each condition separate as a diagnosis, it may be preventing us from a greater understanding. Anagnostou uses the example of a child with autism with sensory sensitivities and a child with ADHD with social challenges, both will be easily distracted and have difficulty interpreting social signals but may be receiving entirely different treatments for their challenges. By refusing to be locked in to previous definitions, Anagnostou hopes that this study will yield new insights.
One of her frustrations is that treatment methods of children with autism are rarely something which can be scaled up and be useful for the entire autism population. Often the treatments are only effective for a particular subset, leaving the rest of the population looking for other answers. This led her to thinking that perhaps the way we've understood the disorder has been in error. She uses the example of sorting things by one attribute, placing grasshoppers, kangaroos and frogs into the category of "things that hop". Although perfectly valid, if one then tried to understand the animals in relation to one another, a researcher would grow quickly frustrated at the apparent differences.
For those who are alarmed, Anagnostou hastens to reassure that autism is a real disorder with real symptoms. She is not attempting to remove the diagnosis but to come to a greater understanding of it, one which would allow for more accurate help and support.
Tuesday 26 April 2016
Panic over Haircut
This morning, it was time for Nathan's summer hair cut. I trim it close in the back and over the ears so that it's easier for him to keep cool. I was having trouble getting the back even, so I decided to ask Dave for his electronic trimmer. Nathan immediately threw a huge tantrum, panicking (I suspect) because we haven't used them before.
This just doesn't strike me as a normal reaction. A kid might be anxious about something he's never used before. I'd expect nervousness but not screaming that he's going to die.
We talked him down and showed him what the trimmer did. Then we had what I would consider a more normal reaction. He was nervous and I needed to go slowly but we got it done.
Last night, he had a similar tantrum when he slipped and fell on the play structure at Cubs. He lay there screaming that he was going to die. I had to pull him off the structure before he would calm down.
That level of reaction isn't typical. It's exhausting never knowing what's going to set him off.
I try to talk to him afterward and help him figure out other ways he could have handled his anxiety but it doesn't seem to be making a difference. It's like he hits panic too quickly for rational thought to have any chance to derail the situation.
Dave and I had talked about getting him some help and had decided we were going to hold off for now. Now I'm wondering if we made the wrong decision.
This just doesn't strike me as a normal reaction. A kid might be anxious about something he's never used before. I'd expect nervousness but not screaming that he's going to die.
We talked him down and showed him what the trimmer did. Then we had what I would consider a more normal reaction. He was nervous and I needed to go slowly but we got it done.
Last night, he had a similar tantrum when he slipped and fell on the play structure at Cubs. He lay there screaming that he was going to die. I had to pull him off the structure before he would calm down.
That level of reaction isn't typical. It's exhausting never knowing what's going to set him off.
I try to talk to him afterward and help him figure out other ways he could have handled his anxiety but it doesn't seem to be making a difference. It's like he hits panic too quickly for rational thought to have any chance to derail the situation.
Dave and I had talked about getting him some help and had decided we were going to hold off for now. Now I'm wondering if we made the wrong decision.
Monday 25 April 2016
Rates of Autism May Be 2.6 % of Population
A massive comprehensive study in South Korea found an overall rate of 2.6 % children with autism or 1 in 36 children. The usual rate cited for autism is 1 in 66 children.
This is the first comprehensive study of an entire population and suggests that autism may be even more prevalent than we first thought. Our current system of diagnosis relies on parents, teachers or doctors raising concerns and having the child tested, which means that many children are probably slipping through the cracks.
Further study is needed in order to understand the numbers and follow up studies are planned for India, South Africa, Mexico and Taiwan. No mention of plans for European countries, the United States or Canada.
If we could ensure that every child with autism received a diagnosis, our understanding of the condition would certainly improve, which might lead to less stigma and more effective treatments.
This is the first comprehensive study of an entire population and suggests that autism may be even more prevalent than we first thought. Our current system of diagnosis relies on parents, teachers or doctors raising concerns and having the child tested, which means that many children are probably slipping through the cracks.
Further study is needed in order to understand the numbers and follow up studies are planned for India, South Africa, Mexico and Taiwan. No mention of plans for European countries, the United States or Canada.
If we could ensure that every child with autism received a diagnosis, our understanding of the condition would certainly improve, which might lead to less stigma and more effective treatments.
Friday 22 April 2016
Getting Nervous About the Dog
Let me preface by saying that I really do not handle long-term uncertainty well. I am a planner. If I have a plan, even if it's a horrible plan, I can cope with pretty much anything that life throws at me.
Usually I handle uncertainty by making contingency plans: if situation A, then plan 1; if situation B, then plan 2. (I go through a lot of alphabets that way.) In the case of Alex's service dog, the plans were relatively easy to lay out. When we know the dog is coming, we need to prepare the school, we will need to look for a larger family car, we will need to purchase dog supplies (a bed, food, dishes, leash, toys, etc.), and we will need to prepare Alex that the dog is coming now (as opposed to the general preparations we have been doing all along).
There are some variables: how will we handle Nathan so that the dog bonds with Alex. The options on the table include loading up Nathan's schedule with activities and playdates to keep him out of the house as much as possible, getting Nathan a pet of his own (probably a kitten), and borrowing a pet for Nathan to take care of (we've had offers of cats, dogs and one hamster). Other variables include: where will the dog sleep, what is the ratio of downtime to working time, how gradually will we introduce the dog to Alex, etc. Those are all issues I expect to get some guidance on when we do the parent training.
The challenging variable is that I have no idea when the dog will arrive or where we stand in the process. I've been dealing with a lot of people who have donated money towards the dog and are frustrated that the dog has not arrived. I've refuted suspicions that we will be refused for a dog or that we will be kept perennially on the waitlist. It's been difficult, particularly when also trying to cope with my own anxiety for the unknown.
In my dark moments, I also wonder: what if they can't provide a dog for Alex? Most children who get service dogs are significantly younger than he is. I don't know what the criteria are for placement and so I have no idea if we're close or laughably impossible. I like to believe that National Service Dogs would tell us if that was the case so that we could pursue other options. Everything I've read and heard about them tells me that they are a decent group who genuinely care about both their animals and the children they help.
In September, it will be two years since we were approved, almost 3 years since we began the process of application. That's a long time to wait and wonder and even though they were honest that most families wait 18 months to 2 years, I'm having a harder time with it as the weeks creep onward.
Hopefully this summer will bring the call telling us that we can plan our trip for parent training and as the leaves turn, Alex will finally meet his companion.
Usually I handle uncertainty by making contingency plans: if situation A, then plan 1; if situation B, then plan 2. (I go through a lot of alphabets that way.) In the case of Alex's service dog, the plans were relatively easy to lay out. When we know the dog is coming, we need to prepare the school, we will need to look for a larger family car, we will need to purchase dog supplies (a bed, food, dishes, leash, toys, etc.), and we will need to prepare Alex that the dog is coming now (as opposed to the general preparations we have been doing all along).
There are some variables: how will we handle Nathan so that the dog bonds with Alex. The options on the table include loading up Nathan's schedule with activities and playdates to keep him out of the house as much as possible, getting Nathan a pet of his own (probably a kitten), and borrowing a pet for Nathan to take care of (we've had offers of cats, dogs and one hamster). Other variables include: where will the dog sleep, what is the ratio of downtime to working time, how gradually will we introduce the dog to Alex, etc. Those are all issues I expect to get some guidance on when we do the parent training.
The challenging variable is that I have no idea when the dog will arrive or where we stand in the process. I've been dealing with a lot of people who have donated money towards the dog and are frustrated that the dog has not arrived. I've refuted suspicions that we will be refused for a dog or that we will be kept perennially on the waitlist. It's been difficult, particularly when also trying to cope with my own anxiety for the unknown.
In my dark moments, I also wonder: what if they can't provide a dog for Alex? Most children who get service dogs are significantly younger than he is. I don't know what the criteria are for placement and so I have no idea if we're close or laughably impossible. I like to believe that National Service Dogs would tell us if that was the case so that we could pursue other options. Everything I've read and heard about them tells me that they are a decent group who genuinely care about both their animals and the children they help.
In September, it will be two years since we were approved, almost 3 years since we began the process of application. That's a long time to wait and wonder and even though they were honest that most families wait 18 months to 2 years, I'm having a harder time with it as the weeks creep onward.
Hopefully this summer will bring the call telling us that we can plan our trip for parent training and as the leaves turn, Alex will finally meet his companion.
Thursday 21 April 2016
Questionable Parenting Moment
Last night, Nathan was looking at some of Dave's Hot Wheels and he found the model of the Ghostbusters car. He asked me if the Ghostbusters were real.
I explained that they were pretend and kept on doing what I was doing.
After a few minutes, he asked me another question: Ghosts are real though, right?
Now, I believe in ghosts and I've told him this before, so I didn't have a problem saying so again. I told him that not everyone agrees but I believe ghosts are real.
Nathan left to go do something else and I continued with my task until it suddenly hit me. I just basically told my son (who already has anxiety issues) that the monsters are real but the people who fight the monsters aren't.
Oops.
It doesn't seem to have bothered him. He's much more focused on ticks right now, after one of his Cub leaders explained about Lyme disease and why it's important to wear long sleeves and long pants when going hiking. Thus far, he's discovered 3 "ticks" in a panic (respectively: a marker dot, sock fluff and a freckle) and needs to be coaxed to go outside.
We've had long talks on the likelihood of catching Lyme disease and what are reasonable precautions. Hopefully that will help.
As for the ghosts, we'll see if it becomes an issue.
I explained that they were pretend and kept on doing what I was doing.
After a few minutes, he asked me another question: Ghosts are real though, right?
Now, I believe in ghosts and I've told him this before, so I didn't have a problem saying so again. I told him that not everyone agrees but I believe ghosts are real.
Nathan left to go do something else and I continued with my task until it suddenly hit me. I just basically told my son (who already has anxiety issues) that the monsters are real but the people who fight the monsters aren't.
Oops.
It doesn't seem to have bothered him. He's much more focused on ticks right now, after one of his Cub leaders explained about Lyme disease and why it's important to wear long sleeves and long pants when going hiking. Thus far, he's discovered 3 "ticks" in a panic (respectively: a marker dot, sock fluff and a freckle) and needs to be coaxed to go outside.
We've had long talks on the likelihood of catching Lyme disease and what are reasonable precautions. Hopefully that will help.
As for the ghosts, we'll see if it becomes an issue.
Wednesday 20 April 2016
Navigating the New World of Autism
We've been getting a lot of calls lately at my work from parents wanting assessments. I was trying to figure out why when a really obvious explanation hit me: people have done the math.
The new Ontario rules cut off the publicly funded therapy for a child over the age of 5. Most parents first suspect a problem with their children between 18 months and 2 1/2 years. The wait time for a publicly funded diagnosis is 18 months, which puts the child at 3 or 4. Add a two year wait for services and most kids who cannot afford private assessment will age out without getting any help at all.
Of course, that's only kids who show significant symptoms early on. I can tell you that we also get a large number of families looking for a first time diagnosis for children in the 7-9 age range, the 13-15 age range and the 17-19 age range. There are no publicly funded services for children that age. I'm not even sure if they would qualify for the free assessments through the Ottawa Children's Treatment Centre.
Exclusive focus on early intervention ends up excluding a lot of children. Not every child with autism is necessarily going to be detected before the age of 2, or even before the age of 5. Don't get me wrong, early intervention is very important and when it can be done, it makes an incredible difference. But it is not a complete solution, even for the children it works perfectly with.
The early intervention round of behaviour therapy is only the first one. Most children will need additional therapy as they get older and the social expectations change. Children with autism are also prone to depression and anxiety and can need specialized help to cope with it.
Talk therapy is not always helpful if the therapist doesn't realize the communication limitations that autism can impose. Most people understand "How are you feeling?" as a general prompt to talk. Someone with autism may interpret it as a social script with only one appropriate answer "I'm fine" or assume it only applies to physical symptoms, which may not apply or may even assume it only refers to this particular moment in time.
It would be nice to hear some acknowledgment of the long term challenges which happen even when things are going well. The stories presented tend to be inspirational (everything's better now) or depressing (we've never gotten any help and now it's a mess). The reality is that this is hard and there are always new challenges to face.
The new Ontario rules cut off the publicly funded therapy for a child over the age of 5. Most parents first suspect a problem with their children between 18 months and 2 1/2 years. The wait time for a publicly funded diagnosis is 18 months, which puts the child at 3 or 4. Add a two year wait for services and most kids who cannot afford private assessment will age out without getting any help at all.
Of course, that's only kids who show significant symptoms early on. I can tell you that we also get a large number of families looking for a first time diagnosis for children in the 7-9 age range, the 13-15 age range and the 17-19 age range. There are no publicly funded services for children that age. I'm not even sure if they would qualify for the free assessments through the Ottawa Children's Treatment Centre.
Exclusive focus on early intervention ends up excluding a lot of children. Not every child with autism is necessarily going to be detected before the age of 2, or even before the age of 5. Don't get me wrong, early intervention is very important and when it can be done, it makes an incredible difference. But it is not a complete solution, even for the children it works perfectly with.
The early intervention round of behaviour therapy is only the first one. Most children will need additional therapy as they get older and the social expectations change. Children with autism are also prone to depression and anxiety and can need specialized help to cope with it.
Talk therapy is not always helpful if the therapist doesn't realize the communication limitations that autism can impose. Most people understand "How are you feeling?" as a general prompt to talk. Someone with autism may interpret it as a social script with only one appropriate answer "I'm fine" or assume it only applies to physical symptoms, which may not apply or may even assume it only refers to this particular moment in time.
It would be nice to hear some acknowledgment of the long term challenges which happen even when things are going well. The stories presented tend to be inspirational (everything's better now) or depressing (we've never gotten any help and now it's a mess). The reality is that this is hard and there are always new challenges to face.
Tuesday 19 April 2016
Waiting In the Rain
Last night, Nathan's Cub troop went on a trail hike. As we arrived for drop off, it was beginning to rain lightly and the leaders recommended that parents come back after an hour (rather than the planned hour and a half) so that the hike could end early. That seemed like a very reasonable plan to me.
I got there at the appointed time and it was beginning to rain more heavily. I thought to myself They'll be back any minute. But I'd brought a book just in case, and I settled in, expecting to see their flashlights bobbing through the woods any moment.
I waited over an hour.
Not only did they not finish the hike early but they were actually half an hour late past the regular starting point. Lots of parents were quite angry about this. Some had younger siblings who were being kept out of bed. Some had work or other commitments being put off.
I was really angry as well. Lack of punctuality has always been one of the easiest ways to irritate me and to me, it shows a complete lack of respect for everyone else. However, I know most people don't see it that way, and so I try not to react inappropriately.
I've wondered how upset I should be about last night. The kids seem to have had a good time. A few came back in tears but mostly, they were excited and eager to share what they'd done. Nathan is getting to the age where he can be more independent and he enjoys being able to do things without my direct supervision. I don't want to taint his enjoyment by worrying about what I'm going through. I certainly don't want him to feel like he's not allowed to have had fun because I had an unpleasant time.
And I recognize that life isn't always predictable. Part of Scouting is learning to deal with nature and its unpredictability, testing oneself against the world and discovering that you are capable of dealing with more than you ever thought. Despite its British origins, getting back in time for tea is not one of the goals.
On the other hand, this was more than a minor inconvenience. As much as I don't want to taint Nathan's experience, I am more than a little frustrated with the leaders for not keeping a better grasp on time and leaving two dozen families effectively stranded by the side of the road in the rain while they waited for their children to reappear.
I got there at the appointed time and it was beginning to rain more heavily. I thought to myself They'll be back any minute. But I'd brought a book just in case, and I settled in, expecting to see their flashlights bobbing through the woods any moment.
I waited over an hour.
Not only did they not finish the hike early but they were actually half an hour late past the regular starting point. Lots of parents were quite angry about this. Some had younger siblings who were being kept out of bed. Some had work or other commitments being put off.
I was really angry as well. Lack of punctuality has always been one of the easiest ways to irritate me and to me, it shows a complete lack of respect for everyone else. However, I know most people don't see it that way, and so I try not to react inappropriately.
I've wondered how upset I should be about last night. The kids seem to have had a good time. A few came back in tears but mostly, they were excited and eager to share what they'd done. Nathan is getting to the age where he can be more independent and he enjoys being able to do things without my direct supervision. I don't want to taint his enjoyment by worrying about what I'm going through. I certainly don't want him to feel like he's not allowed to have had fun because I had an unpleasant time.
And I recognize that life isn't always predictable. Part of Scouting is learning to deal with nature and its unpredictability, testing oneself against the world and discovering that you are capable of dealing with more than you ever thought. Despite its British origins, getting back in time for tea is not one of the goals.
On the other hand, this was more than a minor inconvenience. As much as I don't want to taint Nathan's experience, I am more than a little frustrated with the leaders for not keeping a better grasp on time and leaving two dozen families effectively stranded by the side of the road in the rain while they waited for their children to reappear.
Monday 18 April 2016
And We're Back to Pete the Cat, Dealing With Vocal Stimming
Alex goes through phases for his vocal stims. For awhile, he'd recite a commercial for CLR over and over again. Elmo's Potty Time video and various Wiggles skits are perennial favourites as well.
This weekend we went back to Pete the Cat and his love for his white shoes, his school shoes and his groovy buttons. This picture book is great for kids with autism since it focuses on teaching kids that change doesn't always have to be scary. And it's got a catchy song to go with it.
Alex's vocal stimming has always been an issue for us, mainly because I have auditory sensitivities. I'm one of those people who get driven nuts by dripping taps or random beeps, I hate shopping because I can't tune out the music being pumped into the store (and if I don't like the song, it's double the torture). I don't even like listening to the radio because I can't tune out the commercials.
So listening to the same 10 second bit of dialogue or song over and over again is difficult for me. But I've had to learn to deal with it because it's something Alex needs to make himself calm and which he enjoys.
Usually, if it's really bothering me, I grab my iPod and put in a headphone, giving my auditory brain something else to glom onto. I have tried to teach Alex what the appropriate volume levels are for different situations but I need to be careful that I'm not letting my own irritation dictate what is "appropriate".
I've encouraged Alex to use headphones when he stims on the computer, playing the same 3 second video clip over and over like a professional DJ. I've made the dinner table a "no vocal stim" zone (also a "no electronics" zone for my husband). These are the kind of compromises which keep us all walking along.
Because it's all good.
This weekend we went back to Pete the Cat and his love for his white shoes, his school shoes and his groovy buttons. This picture book is great for kids with autism since it focuses on teaching kids that change doesn't always have to be scary. And it's got a catchy song to go with it.
Alex's vocal stimming has always been an issue for us, mainly because I have auditory sensitivities. I'm one of those people who get driven nuts by dripping taps or random beeps, I hate shopping because I can't tune out the music being pumped into the store (and if I don't like the song, it's double the torture). I don't even like listening to the radio because I can't tune out the commercials.
So listening to the same 10 second bit of dialogue or song over and over again is difficult for me. But I've had to learn to deal with it because it's something Alex needs to make himself calm and which he enjoys.
Usually, if it's really bothering me, I grab my iPod and put in a headphone, giving my auditory brain something else to glom onto. I have tried to teach Alex what the appropriate volume levels are for different situations but I need to be careful that I'm not letting my own irritation dictate what is "appropriate".
I've encouraged Alex to use headphones when he stims on the computer, playing the same 3 second video clip over and over like a professional DJ. I've made the dinner table a "no vocal stim" zone (also a "no electronics" zone for my husband). These are the kind of compromises which keep us all walking along.
Because it's all good.
Friday 15 April 2016
Anger Over Changes to the IBI Program
There has been a lot of uproar about the changes to Ontario's publicly funded IBI program. It's been very confusing trying to figure out just what the government is doing. And a lot of parents are justifiably upset.
As I understand it, the government will be cutting off children over the age of 5 from receiving treatment. There has been talk about a separate program for children over the age of 5, but no one seems to know the details or how long such a program would take to set up or who would qualify. Families whose children are getting kicked off the waitlist will receive $8000 in funding, which is about 2 months of private therapy. (For those wondering, that's barely enough time to get a program started and would be absolutely useless in terms of therapy.)
On the one hand, I can see the government's point of view. The treatment model they use is really only effective for preschool and kindergarten level children. So it makes sense to concentrate on making sure those kids get that treatment rather than making them wait long enough that it's no longer effective when it arrives. (Most kids are diagnosed between 2 and 4 and the wait times are 18 months to 2 years.)
Going forward, the wait times will be shorter and children will receive the therapy when it's most effective. That's good.
But there has to be a better way to deal with the transition than simply discarding entire groups of children whose only crime is to need help and be of the wrong age group. That's the part that parents are angry about and they should be angry about it. My children aren't affected and I'm still furious about how the changes are being handled.
Now, I don't agree with the plan of action being presented by most parents, which is to demand that their children still get the therapy. That therapy isn't effective on older kids and I believe that after waiting years, these children are entitled to the most effective treatment that science can deliver. If the government doesn't have a program to deliver it, then they should be doing direct funding to allow private programs to take up the slack.
I'm not going to cut the government any slack on this issue. They've known that the wait times and treatment ages were a problem for over a decade (since this was a debate back when Alex was diagnosed). They've known how important it is for children with autism to receive treatment and how expensive that treatment is for families. They've known how much stress the financial and emotional burden places on parents.
Telling a large group of desperate people that "too bad, sorry, we're not giving the help we promised" is not acceptable. The current program is the equivalent of kindergarten and the children being cut are at Grade 1 or 2 levels. Promising them more kindergarten is not acceptable. They deserve appropriate services at their appropriate age and developmental level.
Stop pretending that the challenges these families face can be easily brushed aside. These children are Canadian citizens. They deserve more than "too bad" from their leaders.
As I understand it, the government will be cutting off children over the age of 5 from receiving treatment. There has been talk about a separate program for children over the age of 5, but no one seems to know the details or how long such a program would take to set up or who would qualify. Families whose children are getting kicked off the waitlist will receive $8000 in funding, which is about 2 months of private therapy. (For those wondering, that's barely enough time to get a program started and would be absolutely useless in terms of therapy.)
On the one hand, I can see the government's point of view. The treatment model they use is really only effective for preschool and kindergarten level children. So it makes sense to concentrate on making sure those kids get that treatment rather than making them wait long enough that it's no longer effective when it arrives. (Most kids are diagnosed between 2 and 4 and the wait times are 18 months to 2 years.)
Going forward, the wait times will be shorter and children will receive the therapy when it's most effective. That's good.
But there has to be a better way to deal with the transition than simply discarding entire groups of children whose only crime is to need help and be of the wrong age group. That's the part that parents are angry about and they should be angry about it. My children aren't affected and I'm still furious about how the changes are being handled.
Now, I don't agree with the plan of action being presented by most parents, which is to demand that their children still get the therapy. That therapy isn't effective on older kids and I believe that after waiting years, these children are entitled to the most effective treatment that science can deliver. If the government doesn't have a program to deliver it, then they should be doing direct funding to allow private programs to take up the slack.
I'm not going to cut the government any slack on this issue. They've known that the wait times and treatment ages were a problem for over a decade (since this was a debate back when Alex was diagnosed). They've known how important it is for children with autism to receive treatment and how expensive that treatment is for families. They've known how much stress the financial and emotional burden places on parents.
Telling a large group of desperate people that "too bad, sorry, we're not giving the help we promised" is not acceptable. The current program is the equivalent of kindergarten and the children being cut are at Grade 1 or 2 levels. Promising them more kindergarten is not acceptable. They deserve appropriate services at their appropriate age and developmental level.
Stop pretending that the challenges these families face can be easily brushed aside. These children are Canadian citizens. They deserve more than "too bad" from their leaders.
Thursday 14 April 2016
What's That About School Tomorrow?
So apparently there's a PD day tomorrow.
Yeah.
Apparently it got added to the school calendar a couple of months ago. I somehow missed that. But the OCDSB website is clear: tomorrow is a day off for the kids.
So much for my productive week.
Yeah.
Apparently it got added to the school calendar a couple of months ago. I somehow missed that. But the OCDSB website is clear: tomorrow is a day off for the kids.
So much for my productive week.
Wednesday 13 April 2016
Loud, Proud and In Charge
Juggling full schedules is a challenge for all parents. Over the last year, I've been trying to find a way to incorporate more exercise into the regular routine. I've begun using the treadmill after the boys get home from school, while they're occupied with their screentime and getting a good bout of play in. But this left me with a minor dilemma, how to handle having a quick shower once I was done? (Trust me, going without, not an option for me.)
I didn't like leaving the boys unattended. Alex can disarm the alarm system and unlock the outer doors (and still shows a tendency to bolt when no one is watching). I didn't like locking Alex in his room.
After some consideration, I decided to put Nathan "in charge". It's a low level of responsibility, mainly "if anything happens, come and get Mommy". This was a hard decision for me, as Dave and I have always said that we don't want Nathan to feel responsible for Alex. He needs to be free to live his own life and explore his own choices.
But I don't think we're crushing his independence too much by having him do ten minutes of supervision a couple of times a week. (At least, I'm hoping that we're not.) Nathan loves it. He enjoys being identified as responsible and being given authority.
It still seems a little odd to me to have the younger brother "in charge" over the older one, but that's just reality. Meanwhile, I'm getting the exercise I need to stay healthy and the kids are accepting it. So, for now, I'm calling it a win.
I didn't like leaving the boys unattended. Alex can disarm the alarm system and unlock the outer doors (and still shows a tendency to bolt when no one is watching). I didn't like locking Alex in his room.
After some consideration, I decided to put Nathan "in charge". It's a low level of responsibility, mainly "if anything happens, come and get Mommy". This was a hard decision for me, as Dave and I have always said that we don't want Nathan to feel responsible for Alex. He needs to be free to live his own life and explore his own choices.
But I don't think we're crushing his independence too much by having him do ten minutes of supervision a couple of times a week. (At least, I'm hoping that we're not.) Nathan loves it. He enjoys being identified as responsible and being given authority.
It still seems a little odd to me to have the younger brother "in charge" over the older one, but that's just reality. Meanwhile, I'm getting the exercise I need to stay healthy and the kids are accepting it. So, for now, I'm calling it a win.
Tuesday 12 April 2016
Moving To The Next Level for Toileting
There have been many days over the last ten years where I thought we would never get here, but Alex is finally reliable enough in his toileting to move past massive rewards, at least a little.
We've adjusted the reward schedule. Now a BM in the toilet earns a McDonald's ice cream and a letter towards a trip to Montreal. Unlimited screen time is now earned by having clean pants from Monday to Friday. I've created a token system where he can get a token at the end of each day if he hasn't had any accidents.
Unfortunately, yesterday was the first day of our new system and he had an accident just before bedtime. So not a great start, but it was unusual. Last time we did a change in the reward system, the number of successes went down for the first few weeks before beginning to improve. Perhaps we're in for the same cycle again.
Our goal in shifting the rewards is to encourage independent toileting, where Alex uses his daily opportunity of sitting on the toilet to produce rather than having accidents. We know he's capable of withholding for extended periods and releasing when given the opportunity, now we just need him to understand that it is a desirable skill across all days, not just school days.
One more step in the right direction.
We've adjusted the reward schedule. Now a BM in the toilet earns a McDonald's ice cream and a letter towards a trip to Montreal. Unlimited screen time is now earned by having clean pants from Monday to Friday. I've created a token system where he can get a token at the end of each day if he hasn't had any accidents.
Unfortunately, yesterday was the first day of our new system and he had an accident just before bedtime. So not a great start, but it was unusual. Last time we did a change in the reward system, the number of successes went down for the first few weeks before beginning to improve. Perhaps we're in for the same cycle again.
Our goal in shifting the rewards is to encourage independent toileting, where Alex uses his daily opportunity of sitting on the toilet to produce rather than having accidents. We know he's capable of withholding for extended periods and releasing when given the opportunity, now we just need him to understand that it is a desirable skill across all days, not just school days.
One more step in the right direction.
Monday 11 April 2016
Be The Castle, Not the Knight
Last week, I got the chance to speak to Alex's behavioural therapist about Nathan's anxiety. After some questions, she said that it was probably a normal developmental reaction to his increasing independence (with a side effect of being an opportunity to have my unlimited attention for a time).
She did have some good advice to make sure that I didn't make things worse and I think it's worth sharing:
1) Don't simply tell him not to worry. Nathan is an anxious child. He always has been. (So was I, for that matter.) Telling someone who is anxious to "not worry" is just as helpful as telling someone who is depressed to "not be sad". Instead, I have to help him find ways to keep his anxiety from being an obstacle in his life.
2) Don't ride to the rescue. We've all done it. Child says there's a monster under the bed. We peer underneath with a flashlight and tell them there's not. The child has a moment of relief but, by looking, we've enforced a reality that monsters under the bed are a possibility. Ditto telling a child that nothing can happen as long as an adult is there. Because an adult isn't always going to be there and, frankly, isn't a magic shield against something bad happening. The advice summed up as: be a safe place to retreat, not a slayer of monsters. In other words: be the castle, not the knight.
3) Find a strategy which will work for you and your child. For some kids, deep breathing and meditation to overcome general anxiety. For other kids, make them answer "what then" to their "what if" questions. In other cases, make them do a reality check to see how realistic their fears are. In Nathan's case, she recommended a four step process: First, take deep breaths to calm down. Next: analyze the situation, have him figure out how he feels and what he needs. Next: have him present ideas and solutions. There should be at least three and they don't all have to be useful or appropriate. A silly one could be a tension breaker. Finally, have him pick a solution and act on it.
I think this technique will be very effective for Nathan. He gets caught up in a whirl of general anxiety and then it's hard for him to climb back out. By making him focus on the problem at hand and come up with solutions, he'll start to learn that these problems aren't insurmountable panic triggers.
She did have some good advice to make sure that I didn't make things worse and I think it's worth sharing:
1) Don't simply tell him not to worry. Nathan is an anxious child. He always has been. (So was I, for that matter.) Telling someone who is anxious to "not worry" is just as helpful as telling someone who is depressed to "not be sad". Instead, I have to help him find ways to keep his anxiety from being an obstacle in his life.
2) Don't ride to the rescue. We've all done it. Child says there's a monster under the bed. We peer underneath with a flashlight and tell them there's not. The child has a moment of relief but, by looking, we've enforced a reality that monsters under the bed are a possibility. Ditto telling a child that nothing can happen as long as an adult is there. Because an adult isn't always going to be there and, frankly, isn't a magic shield against something bad happening. The advice summed up as: be a safe place to retreat, not a slayer of monsters. In other words: be the castle, not the knight.
3) Find a strategy which will work for you and your child. For some kids, deep breathing and meditation to overcome general anxiety. For other kids, make them answer "what then" to their "what if" questions. In other cases, make them do a reality check to see how realistic their fears are. In Nathan's case, she recommended a four step process: First, take deep breaths to calm down. Next: analyze the situation, have him figure out how he feels and what he needs. Next: have him present ideas and solutions. There should be at least three and they don't all have to be useful or appropriate. A silly one could be a tension breaker. Finally, have him pick a solution and act on it.
I think this technique will be very effective for Nathan. He gets caught up in a whirl of general anxiety and then it's hard for him to climb back out. By making him focus on the problem at hand and come up with solutions, he'll start to learn that these problems aren't insurmountable panic triggers.
Thursday 7 April 2016
Minivent: School Absence Line
Okay, I'm just going to take a moment to vent about something. Our school has a separate phone line to report absences, which is not the problem.
The problem is that when I call, I am treated to not one but two messages telling me not to leave voicemails about absences in the teacher mailbox.
Granted, I get why they don't want people using the teacher mailboxes. The teachers don't always have time to check and even if they do, then they have to tell the office. No issue there.
But if I'm calling the dedicated absence line, then I am doing what they want me to do. Why exactly do I have to listen to two unnecessary and patronizing messages about something I'm not doing?
It sets my teeth on edge every time I have to call in. Thank the gods that the kids are healthy and I don't have to do it very often.
The problem is that when I call, I am treated to not one but two messages telling me not to leave voicemails about absences in the teacher mailbox.
Granted, I get why they don't want people using the teacher mailboxes. The teachers don't always have time to check and even if they do, then they have to tell the office. No issue there.
But if I'm calling the dedicated absence line, then I am doing what they want me to do. Why exactly do I have to listen to two unnecessary and patronizing messages about something I'm not doing?
It sets my teeth on edge every time I have to call in. Thank the gods that the kids are healthy and I don't have to do it very often.
Wednesday 6 April 2016
Two Tantrum Free Mornings
I imposed the "no tantrum to earn screentime" on Monday and to my surprise, we've had two tantrum free mornings.
I expected a behaviour bubble when Nathan would up his bad behaviour in order to pressure me into dropping my expectations. I was prepared for weeks of morning warfare.
Instead, he's been polite and courteous and has earned his screen time.
This makes me think that the tantrums weren't as ingrained as I thought (though he'd certainly been persistent when there were no consequences). Or maybe his self-control is better than I thought. Either way, I'm taking the win.
I expected a behaviour bubble when Nathan would up his bad behaviour in order to pressure me into dropping my expectations. I was prepared for weeks of morning warfare.
Instead, he's been polite and courteous and has earned his screen time.
This makes me think that the tantrums weren't as ingrained as I thought (though he'd certainly been persistent when there were no consequences). Or maybe his self-control is better than I thought. Either way, I'm taking the win.
Tuesday 5 April 2016
When Should I Worry?
I get a lot of parents asking me if they should be worried about their kids. Do I think they should come in for an assessment or should they let it ride and see what happens?
It always makes me a little uncomfortable because I have a definite opinion on the matter, but I'm not a trained psychologist or any kind of trained expert.
At its core, the question is always a mask for something else. Usually "Do you think I'm crazy or overanxious for worrying?" or "Please tell me there's nothing wrong." More of the former than the latter. Those who don't want to find there's something wrong are less likely to call me in the first place.
As a society, we mock overanxious parents: the dad who thinks a food stain is a bruise, the mom who brings her kid to the hospital for mosquito bites, thinking it's chicken pox. By the time a first time parent hits their child's first birthday, they've already been the subject of numerous patronizing smiles and dismissive professional opinions. So when they are noticing signs of autism or any other developmental issue, they start to second guess themselves.
I tell parents that, in my opinion, they should get testing done sooner rather than later. The tests are not harmful (although they are expensive). And if there is a diagnosis waiting, the sooner a parent knows about it, the sooner the child can begin to get help.
It really frustrates and infuriates me when family doctors tell parents to wait a year or two and see what happens. That is a lot of valuable time lost and bluntly, most of the time, when a parent is worried, there is something going on. With a flippant pat on the head, those doctors condemn families to months and years of uncertainty and stress and make it that much harder to help the child in the long term.
This is how I look at it. The doctor is saying to him or herself: there's probably nothing wrong here. Maybe because they don't have much experience with autism. Maybe because they get used to telling parents that their concerns are no big deal. But I would prefer it if they would start thinking about that advice in terms of consequences.
Either the child does or does not have autism. The parents either get testing or don't get testing. It's really easy to map out.
Child doesn't have autism, child doesn't get testing: this is the everybody wins scenario.
Child does have autism, child doesn't get testing: Parents miss out on the vital window of early intervention, making it harder to teach their child the necessary skills. If they start later, treatment will be more expensive, take longer and is usually less effective in the long term. (Again, this is my opinion based on reading of various articles that I've done.)
Child does have autism, child does get testing: The autism is identified and treatment can begin.
Child doesn't have autism, child does get testing: Assuming that another condition isn't diagnosed, in which case the family can begin treatment, then the parents and child can go on exactly as before.
Not getting testing has the potential of everything fine or disastrous consequences. If the parents get the testing, the worst possible consequence is for everything to continue as is. To me, that's a simple and obvious decision and I'd really like to know why so many family doctors continue to advise parents not to get testing.
If you're worried, get your kids tested. End of debate.
It always makes me a little uncomfortable because I have a definite opinion on the matter, but I'm not a trained psychologist or any kind of trained expert.
At its core, the question is always a mask for something else. Usually "Do you think I'm crazy or overanxious for worrying?" or "Please tell me there's nothing wrong." More of the former than the latter. Those who don't want to find there's something wrong are less likely to call me in the first place.
As a society, we mock overanxious parents: the dad who thinks a food stain is a bruise, the mom who brings her kid to the hospital for mosquito bites, thinking it's chicken pox. By the time a first time parent hits their child's first birthday, they've already been the subject of numerous patronizing smiles and dismissive professional opinions. So when they are noticing signs of autism or any other developmental issue, they start to second guess themselves.
I tell parents that, in my opinion, they should get testing done sooner rather than later. The tests are not harmful (although they are expensive). And if there is a diagnosis waiting, the sooner a parent knows about it, the sooner the child can begin to get help.
It really frustrates and infuriates me when family doctors tell parents to wait a year or two and see what happens. That is a lot of valuable time lost and bluntly, most of the time, when a parent is worried, there is something going on. With a flippant pat on the head, those doctors condemn families to months and years of uncertainty and stress and make it that much harder to help the child in the long term.
This is how I look at it. The doctor is saying to him or herself: there's probably nothing wrong here. Maybe because they don't have much experience with autism. Maybe because they get used to telling parents that their concerns are no big deal. But I would prefer it if they would start thinking about that advice in terms of consequences.
Either the child does or does not have autism. The parents either get testing or don't get testing. It's really easy to map out.
Child doesn't have autism, child doesn't get testing: this is the everybody wins scenario.
Child does have autism, child doesn't get testing: Parents miss out on the vital window of early intervention, making it harder to teach their child the necessary skills. If they start later, treatment will be more expensive, take longer and is usually less effective in the long term. (Again, this is my opinion based on reading of various articles that I've done.)
Child does have autism, child does get testing: The autism is identified and treatment can begin.
Child doesn't have autism, child does get testing: Assuming that another condition isn't diagnosed, in which case the family can begin treatment, then the parents and child can go on exactly as before.
Not getting testing has the potential of everything fine or disastrous consequences. If the parents get the testing, the worst possible consequence is for everything to continue as is. To me, that's a simple and obvious decision and I'd really like to know why so many family doctors continue to advise parents not to get testing.
If you're worried, get your kids tested. End of debate.
Monday 4 April 2016
Taking A Stand on Morning Tantrums
No kid has ever liked having to brush their teeth and hair and all the other requirements that go along with having to get ready in the morning. Mine are no different. Alex isn't usually too bad these days, although his level of cooperation can vary sharply. Nathan, however, has been pushing things too far.
If I call him to do his preparations first, he complains that he always has to go first and drags his feet. If I let Alex go first, I get the wails about how it's not fair that Nathan had to wait. He doesn't want me to look at him while he brushes his teeth or hair but then also resists and complains if I then have to do it myself. He doesn't like how the brush feels. He doesn't like that Alex's toothbrush dripped on his toothbrush. He doesn't like that it's the red vitamin instead of the purple vitamin. He hates the purple vitamin and wants an orange one. The orange ones taste yucky.
That should give a good idea of the challenge. I've tried the being patient and talking to him. I've tried the mild consequences, such as having to wait for screentime. And I've had it with the daily performance.
So today, I've made it clear. Tantrums and lack of cooperation mean that screentime goes off the table.
As expected, Nathan is refusing to do any of his post-preparation stuff, like getting dressed or feeding the cat. We had much yelling and throwing of things as he tries to bully us into going back to the old ways. Now he is sulking in a corner and telling us what horrible people we are and how he's never going to watch screentime again and it's all our fault.
In other words, business as usual when we impose new standards.
I probably should have nipped this in the bud earlier, but I've been dealing with making Alex understand that he needs to actually practice brushing his teeth and hair himself if he wants to earn privileges. Otherwise he will only do a cursory effort and then demand that I do it for him.
It's frustrating but at least I'm prepared for it. I knew there would be a behaviour burst and I frankly expect to face the bigger and better tantrums for at least two weeks before Nathan decides that it's not worth the fight. This is where a lot of parents cave and decide their stand isn't worth the extra drama and trauma. Which is how behaviour problems end up getting worse because the child quickly realizes that the worse they act, the less is expected.
I hope Nathan can pull himself together. I've had concerns about his ability to self-regulate before. Once he's upset, he can't pull himself back until his emotions have run the course. With him, it's all about prevention, but I can't let him continue to get away without consequences. That's not fair to him or to the rest of the world who will have to deal with him.
If I call him to do his preparations first, he complains that he always has to go first and drags his feet. If I let Alex go first, I get the wails about how it's not fair that Nathan had to wait. He doesn't want me to look at him while he brushes his teeth or hair but then also resists and complains if I then have to do it myself. He doesn't like how the brush feels. He doesn't like that Alex's toothbrush dripped on his toothbrush. He doesn't like that it's the red vitamin instead of the purple vitamin. He hates the purple vitamin and wants an orange one. The orange ones taste yucky.
That should give a good idea of the challenge. I've tried the being patient and talking to him. I've tried the mild consequences, such as having to wait for screentime. And I've had it with the daily performance.
So today, I've made it clear. Tantrums and lack of cooperation mean that screentime goes off the table.
As expected, Nathan is refusing to do any of his post-preparation stuff, like getting dressed or feeding the cat. We had much yelling and throwing of things as he tries to bully us into going back to the old ways. Now he is sulking in a corner and telling us what horrible people we are and how he's never going to watch screentime again and it's all our fault.
In other words, business as usual when we impose new standards.
I probably should have nipped this in the bud earlier, but I've been dealing with making Alex understand that he needs to actually practice brushing his teeth and hair himself if he wants to earn privileges. Otherwise he will only do a cursory effort and then demand that I do it for him.
It's frustrating but at least I'm prepared for it. I knew there would be a behaviour burst and I frankly expect to face the bigger and better tantrums for at least two weeks before Nathan decides that it's not worth the fight. This is where a lot of parents cave and decide their stand isn't worth the extra drama and trauma. Which is how behaviour problems end up getting worse because the child quickly realizes that the worse they act, the less is expected.
I hope Nathan can pull himself together. I've had concerns about his ability to self-regulate before. Once he's upset, he can't pull himself back until his emotions have run the course. With him, it's all about prevention, but I can't let him continue to get away without consequences. That's not fair to him or to the rest of the world who will have to deal with him.
Friday 1 April 2016
April 1: Autism Cured by Money!
A recent study has determined that autism can be cured by giving each family 1 million dollars per child diagnosed.
When informed, Prime Minister Justin Trudeau said that this is the kind of treatment plan that the government can get behind. "It's simple and direct, with clear goals and boundaries. No one can argue with the science."
The scientists from a matching study to cure autism with strawberries were reported as being disappointed by the government's announcement. An anonymous source claims "Everybody knows the government is biased towards money studies. They can hardly talk about anything without bringing up the money side of things."
When informed, Prime Minister Justin Trudeau said that this is the kind of treatment plan that the government can get behind. "It's simple and direct, with clear goals and boundaries. No one can argue with the science."
The scientists from a matching study to cure autism with strawberries were reported as being disappointed by the government's announcement. An anonymous source claims "Everybody knows the government is biased towards money studies. They can hardly talk about anything without bringing up the money side of things."
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