I have five separate stacks of paperwork sitting on my desk right now:
- Nathan's passport application, which is not urgent but does need to be started soon so that it's here in plenty of time for us to go to Florida.
- permission and not-gonna-sue forms for riding this summer, needs to be in by the end of the week
- application for the new Universal Child Care Benefit ($ 60 per month for children between the ages of 7-18) where they want me to prove that I'm the primary caregiver by providing a birth certificate and evidence of enrolling the child in some kind of activity. This needs to go in fairly promptly. If Harper is trying to buy my vote, he's going to have to pay up.
- a variety of promotional options for my novel, sales have started to trickle off so it's time to launch another campaign. I'm doing some research on NetGalley and Book Bub, plus looking at various contests and getting the book into the Ottawa Public Library
- March's receipts and statements to be sent into Special Services at Home for reimbursement.
This isn't even an unusually busy week. I have a system in place for paperwork where I set up my to-be-done pile at the start of the week in a basket on my desk. Then I make sure to finish one or two pieces each day.
The endlessness of it does get grinding though. There are always applications, receipts to be collected and sent off. I ended up working at my day job until 3:30 yesterday, which meant no writing. And Alex had a rough evening (not unexpected since he earned a bus ride and he always has a rough time after the bus ride) so no opportunity to catch up there.
Maybe it's just winter hanging on forever, but I am definitely feeling discouraged and tired. Maybe it's just time for a vacation.
Tuesday, 31 March 2015
Monday, 30 March 2015
Reduced Price for Autism Conference
The ticket price for Emerging Minds' Autism and Financial Planning Conference has dropped from $ 75 per person to $ 25 per person or $ 40 for a family ticket (2 adults).
I know it can be hard to think about the future when the diagnosis is new, but there are a lot of unique circumstances that families with autism have to face:
- lack of government funded services: autism treatments are not covered by OHIP, adding a significant burden to families
- most assistance programs are means-tested: as in, if you make "too much money" you won't qualify. Most of them have caps in the $ 50 000 to $ 60 000 annual salary range.
- lifelong extra costs like group homes and support workers for low functioning adults with autism.
- high-functioning adults with autism are often underemployed due to their lack of social skills and understanding, which may mean they require additional financial support from their families.
It takes a lot of work and money to give a child with autism a chance to become an independent adult. And it is not guaranteed. I'm hearing more and more about the behind-the-scenes support needed to maintain an "independent" lifestyle and it's frankly worrying. So I strongly encourage families to take this opportunity, if they can, to learn about their options from one of the top financial advisors in Canada.
I know it can be hard to think about the future when the diagnosis is new, but there are a lot of unique circumstances that families with autism have to face:
- lack of government funded services: autism treatments are not covered by OHIP, adding a significant burden to families
- most assistance programs are means-tested: as in, if you make "too much money" you won't qualify. Most of them have caps in the $ 50 000 to $ 60 000 annual salary range.
- lifelong extra costs like group homes and support workers for low functioning adults with autism.
- high-functioning adults with autism are often underemployed due to their lack of social skills and understanding, which may mean they require additional financial support from their families.
It takes a lot of work and money to give a child with autism a chance to become an independent adult. And it is not guaranteed. I'm hearing more and more about the behind-the-scenes support needed to maintain an "independent" lifestyle and it's frankly worrying. So I strongly encourage families to take this opportunity, if they can, to learn about their options from one of the top financial advisors in Canada.
Friday, 27 March 2015
24 Hours of Isolation
Sometime on Wednesday, a cable was pulled from its socket and our phone and Internet went dead.
Thursday afternoon, Bell came in, found the problem and repaired it.
The cable was in the small green box/pillar outside our house. The access was locked and the cable itself is buried between the box and house. So how did it get pulled out of the socket?
It's a mystery we will probably never know the answer to. It seems unlikely that we have wild animals roaming the neighbourhood and unplugging telephone hard lines. I can't see kids playing with it (especially since it probably occurred during school hours). Dave is convinced it is somehow the result of the melting snow, though I'm having a hard time seeing how.
But for an afternoon, evening and morning, we were cut off from the outside world. (We had our cell phones in case of emergencies but that was really it.) No screen time for the kids, no interruptions from telemarketers to sell us frozen meat or eternal salvation. It was quiet.
We read. We did puzzles. The kids played with their toys. It was actually rather pleasant.
I wouldn't want to live unconnected all the time but for one day, it was a nice change.
Thursday afternoon, Bell came in, found the problem and repaired it.
The cable was in the small green box/pillar outside our house. The access was locked and the cable itself is buried between the box and house. So how did it get pulled out of the socket?
It's a mystery we will probably never know the answer to. It seems unlikely that we have wild animals roaming the neighbourhood and unplugging telephone hard lines. I can't see kids playing with it (especially since it probably occurred during school hours). Dave is convinced it is somehow the result of the melting snow, though I'm having a hard time seeing how.
But for an afternoon, evening and morning, we were cut off from the outside world. (We had our cell phones in case of emergencies but that was really it.) No screen time for the kids, no interruptions from telemarketers to sell us frozen meat or eternal salvation. It was quiet.
We read. We did puzzles. The kids played with their toys. It was actually rather pleasant.
I wouldn't want to live unconnected all the time but for one day, it was a nice change.
Wednesday, 25 March 2015
An Argument For Homework
Over the last couple of years, I've seen a number of articles referring to studies which show that homework is not an effective learning tool. I have my doubts on this, although I certainly agree that forcing children and teens to do 3-4 hours extra of schoolwork a day is not helpful. However, that is not the sole possible outcome of homework.
Nathan's school has a "learn it at school" policy, where teachers and students are encouraged to work together rather than sending home regular assignments. There are still projects and such but not a nightly set of worksheets. Sounds good but in speaking with some of the other moms, there may be an inherent flaw.
We have no idea what our kids are working on.
Now, this might sound like helicopter-parent anxiety but there's more to it. Since we have no idea what our kids are working on, we can't easily get a sense of where our children might be having difficulty. Expecting them to come to us and say "I'm having problems with this and would like to do extra work" is right up there with expecting "no sweets tonight, Mom, can I have extra vegetables instead?"
It also leaves us floundering when projects, etc., do come home. Recently Nathan had to prepare for a test. I wasn't sure what level he should be working towards. I had a sheet with a series of terms and definitions. Should he be recognizing which go with which? Or should he be able to independently give the definition of a term? (It turned out that he just had to match the term to the definition for the test.)
I'm not sure where a solution lies for this. Nathan does get regular reading and math work sent home once or twice a month, and it takes him a long time to complete it. I don't think I want extra stuff piled on. But at the same time, I'd like to have a greater idea of what's going on. I don't want school to be a black box where I send my child every day.
Nathan's school has a "learn it at school" policy, where teachers and students are encouraged to work together rather than sending home regular assignments. There are still projects and such but not a nightly set of worksheets. Sounds good but in speaking with some of the other moms, there may be an inherent flaw.
We have no idea what our kids are working on.
Now, this might sound like helicopter-parent anxiety but there's more to it. Since we have no idea what our kids are working on, we can't easily get a sense of where our children might be having difficulty. Expecting them to come to us and say "I'm having problems with this and would like to do extra work" is right up there with expecting "no sweets tonight, Mom, can I have extra vegetables instead?"
It also leaves us floundering when projects, etc., do come home. Recently Nathan had to prepare for a test. I wasn't sure what level he should be working towards. I had a sheet with a series of terms and definitions. Should he be recognizing which go with which? Or should he be able to independently give the definition of a term? (It turned out that he just had to match the term to the definition for the test.)
I'm not sure where a solution lies for this. Nathan does get regular reading and math work sent home once or twice a month, and it takes him a long time to complete it. I don't think I want extra stuff piled on. But at the same time, I'd like to have a greater idea of what's going on. I don't want school to be a black box where I send my child every day.
Tuesday, 24 March 2015
Feeling Things Too Deeply
One of the points on yesterday's post was that people with autism aren't emotionally cold, instead they feel things too intensely.
We got an example of that yesterday. Nathan was at school and dropped a ball. When he went to pick it up, another child got to it first. Nathan got so upset that he hit the other child. According to the teacher, he then immediately apologized and made sure the other child was okay.
It's been a few months since Nathan's last violent outburst. But he routinely gets upset if his expectations aren't met. Once he's upset, it's impossible to calm him down. He needs time and space to calm himself down before he can handle any kind of interaction.
I've talked to him about having big feelings (which is something I still struggle with). Feelings that are overwhelming and leave us feeling as if we have to do something to let them out or else explode. I've learned coping techniques and I'm trying to pass them on but none are instant successes. It took me many years of practice to get them to work for me, so I'm trying to be patient with him.
We got an example of that yesterday. Nathan was at school and dropped a ball. When he went to pick it up, another child got to it first. Nathan got so upset that he hit the other child. According to the teacher, he then immediately apologized and made sure the other child was okay.
It's been a few months since Nathan's last violent outburst. But he routinely gets upset if his expectations aren't met. Once he's upset, it's impossible to calm him down. He needs time and space to calm himself down before he can handle any kind of interaction.
I've talked to him about having big feelings (which is something I still struggle with). Feelings that are overwhelming and leave us feeling as if we have to do something to let them out or else explode. I've learned coping techniques and I'm trying to pass them on but none are instant successes. It took me many years of practice to get them to work for me, so I'm trying to be patient with him.
Monday, 23 March 2015
6 Things People With Autism Want You To Know
I found this article on one of my regular comedy haunts but it was surprisingly well done. They interviewed high functioning people with autism to compile the list of 6 Strange Truths About Life With Autism.
6. Pop culture always gets autism wrong.
This is pretty much a given for any complex and nuanced issue. I will admit that I stopped watching Glee because of the character they introduced with Aspergers, who basically used it as an excuse to be a jerk. She didn't show any of the signs of having difficulty understanding social interactions or repetitive calming rituals. Instead she would just be insulting and cap it off with "Aspergers".
The best portrayal of autism was actually on a House episode "Lines in the Sand" when the team treats an autistic boy. Granted, the child was fairly low functioning, but it was still much more accurate for what families go through than say, Big Bang.
5. Our largest charity wants to "cure" us.
Again, total agreement from me. It's one of the reasons I don't support Autism Speaks and Defeat Autism Now. Aside from their focus on vaccines (which I don't agree with and won't get into here), very little of the funding actually goes to help people with autism and their families.
Admittedly, I go back and forth between not wanting to call autism a disease and wishing it was something that could be "cured". But in the end, my kids and husband would be fundamentally different people without autism. I wish we could focus on figuring out ways to teach them the skills they will need to interact with the world in ways that make sense to their brains. We don't expect blind kids to pick up a print book and read it, why can't we develop the equivalent of Braille for autistic kids?
4. Sometimes self-diagnosis is important.
This section focused on the tendency for people to equate jerky behavior with autism. But it raised a good point that doctors still have a hard time recognizing autistic symptoms, which can lead to misdiagnosis and unnecessary (and ineffective) medication. Granted, I get that doctors have a lot of stuff on their plate and it's hard to remember all the possible disorders out there, but that makes it even more important for people with autism (or who suspect they or their child have autism) to be assertive self-advocates and pursue proper testing.
3. People with autism are not "cold" - We actually feel too much emotion.
I've seen this with my own kids and dozens of others. They are 100% genuine, expressing whatever emotion they happen to be feeling with no reservations. I've also seen them retreat into ritual in order to avoid being overwhelmed.
2. We see a different world and speak a different language.
Again, this is why I think we need to concentrate on teaching methods rather than "cures". There is huge untapped potential for seeing things in a unique way. Who knows what solutions we could come up with if we worked together.
1. For people with autism, work is a huge hurdle.
This is one of my biggest fears. That despite all the work I do to help my children navigate the world, they will always be stigmatized because of a label or ostracized because they're "weird". I want them to have all the opportunities they dream of, not be stuck out of sight because they make other people uncomfortable.
6. Pop culture always gets autism wrong.
This is pretty much a given for any complex and nuanced issue. I will admit that I stopped watching Glee because of the character they introduced with Aspergers, who basically used it as an excuse to be a jerk. She didn't show any of the signs of having difficulty understanding social interactions or repetitive calming rituals. Instead she would just be insulting and cap it off with "Aspergers".
The best portrayal of autism was actually on a House episode "Lines in the Sand" when the team treats an autistic boy. Granted, the child was fairly low functioning, but it was still much more accurate for what families go through than say, Big Bang.
5. Our largest charity wants to "cure" us.
Again, total agreement from me. It's one of the reasons I don't support Autism Speaks and Defeat Autism Now. Aside from their focus on vaccines (which I don't agree with and won't get into here), very little of the funding actually goes to help people with autism and their families.
Admittedly, I go back and forth between not wanting to call autism a disease and wishing it was something that could be "cured". But in the end, my kids and husband would be fundamentally different people without autism. I wish we could focus on figuring out ways to teach them the skills they will need to interact with the world in ways that make sense to their brains. We don't expect blind kids to pick up a print book and read it, why can't we develop the equivalent of Braille for autistic kids?
4. Sometimes self-diagnosis is important.
This section focused on the tendency for people to equate jerky behavior with autism. But it raised a good point that doctors still have a hard time recognizing autistic symptoms, which can lead to misdiagnosis and unnecessary (and ineffective) medication. Granted, I get that doctors have a lot of stuff on their plate and it's hard to remember all the possible disorders out there, but that makes it even more important for people with autism (or who suspect they or their child have autism) to be assertive self-advocates and pursue proper testing.
3. People with autism are not "cold" - We actually feel too much emotion.
I've seen this with my own kids and dozens of others. They are 100% genuine, expressing whatever emotion they happen to be feeling with no reservations. I've also seen them retreat into ritual in order to avoid being overwhelmed.
2. We see a different world and speak a different language.
Again, this is why I think we need to concentrate on teaching methods rather than "cures". There is huge untapped potential for seeing things in a unique way. Who knows what solutions we could come up with if we worked together.
1. For people with autism, work is a huge hurdle.
This is one of my biggest fears. That despite all the work I do to help my children navigate the world, they will always be stigmatized because of a label or ostracized because they're "weird". I want them to have all the opportunities they dream of, not be stuck out of sight because they make other people uncomfortable.
Friday, 20 March 2015
Autism, School, Police and Handcuffs
Quickly everyone, sing the Sesame Street song with me: One of these things is not like the others. One of these things just doesn't belong.
I was disturbed when I first heard about a nine year old autistic boy being removed from his class in handcuffs by the police. Children and handcuffs don't really go together, it's one of the easiest shortcuts to show that someone is abusive: show them handcuffing a child.
The child had evidently become agitated and begun throwing desks, so I can understand the teacher's concerns and the need to resolve the situation quickly to keep everyone safe. (Obviously it would have been better if the situation could have been avoided or redirected, but the reality is that it is not always possible.)
Calling the police would not have been my first choice. I've talked before about the need to learn proper physical restraining techniques (here and here).
Schools are so paranoid about being sued that teachers aren't allowed to hug students, let alone learn techniques that could help them to contain the situation before it reaches desk throwing proportions. It's a twisted situation when calling the police is more acceptable than giving a hug. We need some common sense perspective again.
The parents of the boy are refusing to allow him to return to school until they have his records. Again, I think that is a smart idea. This situation did not occur in a vacuum. There have probably been many incidents leading up to this. To improve the situation, there needs to be total transparency about what has happened, what was tried and what did not work. The school is resisting, again, I suspect out of a fear of being sued or made to look bad.
Guess what? That ship has sailed. The situation cannot be corrected if one of the parties is more interested in their reputation than in fixing the problem. This is the part which makes me frustrated and more than a little fearful for my own children.
I've learned to put my ego aside (it isn't always easy) when it comes to my kids so that I have the opportunity to learn to do things better. I need to be honest and admit when I am making mistakes or doing things which "look bad" in order to get better tools and better skills. I've taken many smarting blows in my pride, but I've clawed my way to a better situation.
I think we'd all be better served if we cared more about the environment we are creating and the results we are getting than about the perceptions others have of us.
I was disturbed when I first heard about a nine year old autistic boy being removed from his class in handcuffs by the police. Children and handcuffs don't really go together, it's one of the easiest shortcuts to show that someone is abusive: show them handcuffing a child.
The child had evidently become agitated and begun throwing desks, so I can understand the teacher's concerns and the need to resolve the situation quickly to keep everyone safe. (Obviously it would have been better if the situation could have been avoided or redirected, but the reality is that it is not always possible.)
Calling the police would not have been my first choice. I've talked before about the need to learn proper physical restraining techniques (here and here).
Schools are so paranoid about being sued that teachers aren't allowed to hug students, let alone learn techniques that could help them to contain the situation before it reaches desk throwing proportions. It's a twisted situation when calling the police is more acceptable than giving a hug. We need some common sense perspective again.
The parents of the boy are refusing to allow him to return to school until they have his records. Again, I think that is a smart idea. This situation did not occur in a vacuum. There have probably been many incidents leading up to this. To improve the situation, there needs to be total transparency about what has happened, what was tried and what did not work. The school is resisting, again, I suspect out of a fear of being sued or made to look bad.
Guess what? That ship has sailed. The situation cannot be corrected if one of the parties is more interested in their reputation than in fixing the problem. This is the part which makes me frustrated and more than a little fearful for my own children.
I've learned to put my ego aside (it isn't always easy) when it comes to my kids so that I have the opportunity to learn to do things better. I need to be honest and admit when I am making mistakes or doing things which "look bad" in order to get better tools and better skills. I've taken many smarting blows in my pride, but I've clawed my way to a better situation.
I think we'd all be better served if we cared more about the environment we are creating and the results we are getting than about the perceptions others have of us.
Thursday, 19 March 2015
A Milestone: First Dinner Out
Yesterday, Nathan was invited to a playdate and dinner at a friend's house. This is the first time he has eaten at someone else's home without the rest of the family. I was actually somewhat nervous about it. Nathan can get upset in unfamiliar situations. Would he become flustered by a different dinner routine? Would he be okay with new food?
It turns out everything went fine. He ate his food and (according to the mom) minded his manners.
One more door opened for social interactions.
It turns out everything went fine. He ate his food and (according to the mom) minded his manners.
One more door opened for social interactions.
Wednesday, 18 March 2015
Halfway Through
Halfway through March Break and so far, we're holding. I haven't been able to get any writing done, which I find quite frustrating. It doesn't bode well for the summer. A week of not being productive is one thing. Two months is something else entirely.
Alex has enjoyed the pattern of getting out in the morning and then therapy in the afternoon. And Nathan has been enjoying his camp.
I'm the one finding it frustrating to try and keep everything moving. But today is the halfway point, with only 4 more days until school (if you don't count today). We've lost a lot of toys and gear to Alex's destructiveness, which is frustrating. Our bedroom is packed full of things I can't afford to have him destroy (or wouldn't be able to deal with it in a gracious way).
Alex has enjoyed the pattern of getting out in the morning and then therapy in the afternoon. And Nathan has been enjoying his camp.
I'm the one finding it frustrating to try and keep everything moving. But today is the halfway point, with only 4 more days until school (if you don't count today). We've lost a lot of toys and gear to Alex's destructiveness, which is frustrating. Our bedroom is packed full of things I can't afford to have him destroy (or wouldn't be able to deal with it in a gracious way).
Tuesday, 17 March 2015
Taxes Done
Another year, another inevitable audit on its way.
CRA goes through our taxes every year because of the medical expenses. Every year I hand them an inch-thick stack of receipts. Every year they accept them and then go on.
This year is a little more complicated because I have expenses (but no income) from my book. Claiming them definitely helped.
However, next year we will not only have the complications of medical expenses but also the difficulty of claiming expenses and income for a self-employed business which receives income from both the US and Canada. Next year, I will be hiring someone to do the taxes for me and make sure that everything is being claimed properly.
CRA has a great list of allowable and unallowable expenses that families can claim. I try to go through them at least once a year to see if anything has changed.
I also got a notice that the government is expanding the Universal Child Care Benefit for children over 6 years old. Now children between 6 and 18 will qualify for $ 60 per month. But here's the catch: you have to apply if you're not currently receiving benefits.
I also need to have a look and see if Nathan's Disability Tax Credit form expires next year. Sometimes it seems like the paperwork never ends.
CRA goes through our taxes every year because of the medical expenses. Every year I hand them an inch-thick stack of receipts. Every year they accept them and then go on.
This year is a little more complicated because I have expenses (but no income) from my book. Claiming them definitely helped.
However, next year we will not only have the complications of medical expenses but also the difficulty of claiming expenses and income for a self-employed business which receives income from both the US and Canada. Next year, I will be hiring someone to do the taxes for me and make sure that everything is being claimed properly.
CRA has a great list of allowable and unallowable expenses that families can claim. I try to go through them at least once a year to see if anything has changed.
I also got a notice that the government is expanding the Universal Child Care Benefit for children over 6 years old. Now children between 6 and 18 will qualify for $ 60 per month. But here's the catch: you have to apply if you're not currently receiving benefits.
I also need to have a look and see if Nathan's Disability Tax Credit form expires next year. Sometimes it seems like the paperwork never ends.
Monday, 16 March 2015
Alex's Omelet
This weekend illustrated why we have to be careful leaving Alex unsupervised. On Sunday, Dave and Nathan headed off to Nana's, leaving Alex and I on our own.
We were having a fairly good day. (I had locked up the cats to remove the major temptation.)
I had to go to the bathroom and when I came out, Alex had cracked three eggs into a frying pan and was stirring them up. He was recreating a scene from a Baby Bumblebee word illustration.
While I was cleaning that up, he ran upstairs and climbed into the washer again to play Oscar the Grouch.
I brought him back downstairs and he proceeded to pester me for the iPad, which he hadn't earned. Then he wanted to go play upstairs in his room. I allowed him and went to fold laundry in the hall, figuring I could protect the washer from there.
The washer, maybe, but not the bathroom. He began filling up the sink to pretend to be Mr Noodle (Elmo's World) washing his hands.
Okay, no more upstairs. Back down we all go. Next he sits behind the couch and begins to disassemble some of the therapy tools.
This all happened in less than half an hour and continued throughout the day. And each incident and redirection was punctuated with whining, screaming and headbanging. I can't say he's being "bad" since I don't believe he understands that he's not supposed to do those things. But keeping an eye on him is a relentless task these days. I literally cannot do anything else, not even read, since it means taking my attention away from him.
We were having a fairly good day. (I had locked up the cats to remove the major temptation.)
I had to go to the bathroom and when I came out, Alex had cracked three eggs into a frying pan and was stirring them up. He was recreating a scene from a Baby Bumblebee word illustration.
While I was cleaning that up, he ran upstairs and climbed into the washer again to play Oscar the Grouch.
I brought him back downstairs and he proceeded to pester me for the iPad, which he hadn't earned. Then he wanted to go play upstairs in his room. I allowed him and went to fold laundry in the hall, figuring I could protect the washer from there.
The washer, maybe, but not the bathroom. He began filling up the sink to pretend to be Mr Noodle (Elmo's World) washing his hands.
Okay, no more upstairs. Back down we all go. Next he sits behind the couch and begins to disassemble some of the therapy tools.
This all happened in less than half an hour and continued throughout the day. And each incident and redirection was punctuated with whining, screaming and headbanging. I can't say he's being "bad" since I don't believe he understands that he's not supposed to do those things. But keeping an eye on him is a relentless task these days. I literally cannot do anything else, not even read, since it means taking my attention away from him.
Friday, 13 March 2015
A New Behaviour Approach
Since the Christmas holidays, we've had to deal with an increasing number of tantrums and headbanging from Alex. It has been very frustrating and wearing to be constantly bombarded with whining, screams and the shattering impact of him slamming his head into doors, walls, and furniture. (Usually followed by more crying and screaming.)
Nathan has reached his limit and is starting to scream back at his brother, which only escalates the situation. However, it's a little much to ask a 7 year old to have the discipline to ignore it.
We went to our behavioural specialist and, frankly, begged for some idea of what to do. We had three theories as to the cause:
- Alex is doing it for attention. He is most likely to begin if he has been told no or if Dave and I are occupied and trying to get something done.
- Alex is overwhelmed by the demands of therapy, school and toilet training.
- By using the iPad as a reward for toilet training, we reduced its effectiveness for compliance and now Alex has no motivation to comply.
The school and his music therapist have also seen an increase in problems. For the last 3 weeks, the music therapist has been unable to get Alex to do even the simplest task (like staying put in the room for the 20 minute session). However, the regular therapists have not seen an increase in problems. He's been very compliant for them in order to earn his bus ride tokens.
From all this information, the behavioural specialist believes our third theory (reward satiation) is the correct one. It's unlikely to be for attention, since it is across different environments. It is possible that he is overwhelmed, but unlikely since he is controlling himself in therapy.
We've known for a long time that Alex stops working for rewards very quickly. It takes something fairly special for him to decide it's worth making an effort for. The iPad is one of those things, which is why we used it.
We've now split up the rewards: iPad and computer for compliance and xBox and TV for toileting. If that doesn't work, we will need to figure out a non-screentime reward for toileting which will be difficult.
Figuring out what's going on with Alex is a challenge. We cannot make any assumptions about how he sees things and we need to try and make our demands as consistent as possible for him to understand the requirements. After that, it's a matter of trying things out to see what happens. We only ever truly understand what the situation was after we've "cured" it.
Nathan has reached his limit and is starting to scream back at his brother, which only escalates the situation. However, it's a little much to ask a 7 year old to have the discipline to ignore it.
We went to our behavioural specialist and, frankly, begged for some idea of what to do. We had three theories as to the cause:
- Alex is doing it for attention. He is most likely to begin if he has been told no or if Dave and I are occupied and trying to get something done.
- Alex is overwhelmed by the demands of therapy, school and toilet training.
- By using the iPad as a reward for toilet training, we reduced its effectiveness for compliance and now Alex has no motivation to comply.
The school and his music therapist have also seen an increase in problems. For the last 3 weeks, the music therapist has been unable to get Alex to do even the simplest task (like staying put in the room for the 20 minute session). However, the regular therapists have not seen an increase in problems. He's been very compliant for them in order to earn his bus ride tokens.
From all this information, the behavioural specialist believes our third theory (reward satiation) is the correct one. It's unlikely to be for attention, since it is across different environments. It is possible that he is overwhelmed, but unlikely since he is controlling himself in therapy.
We've known for a long time that Alex stops working for rewards very quickly. It takes something fairly special for him to decide it's worth making an effort for. The iPad is one of those things, which is why we used it.
We've now split up the rewards: iPad and computer for compliance and xBox and TV for toileting. If that doesn't work, we will need to figure out a non-screentime reward for toileting which will be difficult.
Figuring out what's going on with Alex is a challenge. We cannot make any assumptions about how he sees things and we need to try and make our demands as consistent as possible for him to understand the requirements. After that, it's a matter of trying things out to see what happens. We only ever truly understand what the situation was after we've "cured" it.
Thursday, 12 March 2015
Planning for the Future: Wills
Yesterday, Dave and I went to see a lawyer about updating our will.
There are a lot of factors to think about. We set up a Henson trust for each of our boys, which means that their inheritance will not affect any disability payments or services. In short, it means paying out money from their inheritance will be at the complete discretion of a third party.
We had to decide who to assign as guardians (people to take care of the children while they are under 21), trustees (to manage the Henson trust) and executor (who will manage the entire estate). Our lawyer cautioned us against putting all these posts with the same person, since that person would then have complete control of the boys and their money without any external checks.
Dave and I did some thinking about it last night and we run into a problem. While we agree in principle, we also are having trouble coming up with potential candidates. To assign someone as a co-executor or co-trustee with the Henson trust will require a lot of meetings over the boys' lifetimes, most of which will be: Boys need this. Okay. Sign the papers, move on.
If we assign someone who is too suspicious or antagonistic, then those meetings will become a source of friction for everyone. Things could devolve into legal proceedings. (We're trying to keep in mind that if this does occur, people will be adjusting to a new situation and dealing with grief, which tends to make everyone less tolerant and accepting.) The boys could be caught in the middle of a massive tug of war that has nothing to do with them.
If we assign someone who is amiable and accepting, then they are unlikely to be a good external check on the situation. They will rubberstamp any decisions, eliminating their usefulness.
Ideally, we also need someone with regular contact with the boys. Someone who has a good understanding of where they are and what their needs are so that they can understand whether or not a decision is reasonable or makes sense.
To be clear, we trust the guardians we have appointed (my parents). They have a good understanding of where the boys are, spend lots of time with them and it would be the most low-stress option for a transition. They aren't going to be after the boys' money or mismanage funds. I suspect they would be very vigilant about even the appearance of impropriety.
But at the same time, an external point of view is valuable. Someone to suggest options or see around blind spots. (We all have them, so the goal is to try and find someone whose blind spots don't line up with yours.)
The final argument for assigning a third party is that it also provides for a smoother transition when my parents die (as they inevitably will ... sorry, just a fact of life). There will already be someone in place who is familiar with the situation. And, if worse comes to worse and there is an abrupt incident, there would still be someone able to help the boys out and manage their needs.
Hopefully none of this will be necessary. But it's better to have a tight-woven safety net ready to go just in case.
There are a lot of factors to think about. We set up a Henson trust for each of our boys, which means that their inheritance will not affect any disability payments or services. In short, it means paying out money from their inheritance will be at the complete discretion of a third party.
We had to decide who to assign as guardians (people to take care of the children while they are under 21), trustees (to manage the Henson trust) and executor (who will manage the entire estate). Our lawyer cautioned us against putting all these posts with the same person, since that person would then have complete control of the boys and their money without any external checks.
Dave and I did some thinking about it last night and we run into a problem. While we agree in principle, we also are having trouble coming up with potential candidates. To assign someone as a co-executor or co-trustee with the Henson trust will require a lot of meetings over the boys' lifetimes, most of which will be: Boys need this. Okay. Sign the papers, move on.
If we assign someone who is too suspicious or antagonistic, then those meetings will become a source of friction for everyone. Things could devolve into legal proceedings. (We're trying to keep in mind that if this does occur, people will be adjusting to a new situation and dealing with grief, which tends to make everyone less tolerant and accepting.) The boys could be caught in the middle of a massive tug of war that has nothing to do with them.
If we assign someone who is amiable and accepting, then they are unlikely to be a good external check on the situation. They will rubberstamp any decisions, eliminating their usefulness.
Ideally, we also need someone with regular contact with the boys. Someone who has a good understanding of where they are and what their needs are so that they can understand whether or not a decision is reasonable or makes sense.
To be clear, we trust the guardians we have appointed (my parents). They have a good understanding of where the boys are, spend lots of time with them and it would be the most low-stress option for a transition. They aren't going to be after the boys' money or mismanage funds. I suspect they would be very vigilant about even the appearance of impropriety.
But at the same time, an external point of view is valuable. Someone to suggest options or see around blind spots. (We all have them, so the goal is to try and find someone whose blind spots don't line up with yours.)
The final argument for assigning a third party is that it also provides for a smoother transition when my parents die (as they inevitably will ... sorry, just a fact of life). There will already be someone in place who is familiar with the situation. And, if worse comes to worse and there is an abrupt incident, there would still be someone able to help the boys out and manage their needs.
Hopefully none of this will be necessary. But it's better to have a tight-woven safety net ready to go just in case.
Wednesday, 11 March 2015
Timing for Reinforcement
Our behavioural specialist tells me that any action which receives a reward within 3 seconds of occurrence will be reinforced. So timing is critical when trying to modify behaviour.
When training animals, trainers will use a clicking noisemaker to identify the desired skill. The clicks are then followed up with treats. Otherwise, the gap between the skill and the reinforcement can be too long and too confusing.
The trouble comes when an undesired behaviour comes in between a desired behaviour and the reward. I've had this happen a lot, particularly with Alex. He will earn a reward but then begin throwing a tantrum before receiving it. Now I'm left with a problem. If I don't give him the reward, I don't enforce the good behaviour. If I do give him the reward, I can end up reinforcing the tantrum.
It's really tempting to believe that he will understand that the reward is for the good behaviour, particularly if I've praised it in the moment. After all, a typical child would understand that he or she is getting ice cream for having gotten an A on their homework even if they just had a tantrum about not getting to play Xbox. We are primed to understand and work with delayed gratification.
But delayed gratification is not instinctual. It depends on social understanding. So a child with autism may not be able to make those links. In Alex's case, his behaviour confirms it. He only understands what is happening in the moment. He has a great deal of trouble understanding that something in the moment is connected to the past or the future.
This is one of the hardest things to grasp, that his mind does not work the way ours does. I've had many people point to things he does and tell me that it is similar to what their typically developing children do. But it comes from an entirely different way of thinking. If he asks for ice cream at his grandmother's, he's not relying on grandparental indulgence or understanding that rules can be different at different places. He's negotiating and will continue to negotiate regardless of location if he has success. He doesn't categorize based on social rules. His criteria are likely more to do with weather or day of the week or something else.
It takes a lot of observation to figure out how he's putting things together and then try and coax him to see things in a way which is closer to neurotypical. Often we end up with the equivalent of "cheat sheets" rather than true understanding: like being told only an adult can open the door, which prevents him from taking off when it isn't appropriate. He can't understand the circumstances which make it appropriate vs inappropriate, so he needs a standardized rule to follow in all circumstances.
When training animals, trainers will use a clicking noisemaker to identify the desired skill. The clicks are then followed up with treats. Otherwise, the gap between the skill and the reinforcement can be too long and too confusing.
The trouble comes when an undesired behaviour comes in between a desired behaviour and the reward. I've had this happen a lot, particularly with Alex. He will earn a reward but then begin throwing a tantrum before receiving it. Now I'm left with a problem. If I don't give him the reward, I don't enforce the good behaviour. If I do give him the reward, I can end up reinforcing the tantrum.
It's really tempting to believe that he will understand that the reward is for the good behaviour, particularly if I've praised it in the moment. After all, a typical child would understand that he or she is getting ice cream for having gotten an A on their homework even if they just had a tantrum about not getting to play Xbox. We are primed to understand and work with delayed gratification.
But delayed gratification is not instinctual. It depends on social understanding. So a child with autism may not be able to make those links. In Alex's case, his behaviour confirms it. He only understands what is happening in the moment. He has a great deal of trouble understanding that something in the moment is connected to the past or the future.
This is one of the hardest things to grasp, that his mind does not work the way ours does. I've had many people point to things he does and tell me that it is similar to what their typically developing children do. But it comes from an entirely different way of thinking. If he asks for ice cream at his grandmother's, he's not relying on grandparental indulgence or understanding that rules can be different at different places. He's negotiating and will continue to negotiate regardless of location if he has success. He doesn't categorize based on social rules. His criteria are likely more to do with weather or day of the week or something else.
It takes a lot of observation to figure out how he's putting things together and then try and coax him to see things in a way which is closer to neurotypical. Often we end up with the equivalent of "cheat sheets" rather than true understanding: like being told only an adult can open the door, which prevents him from taking off when it isn't appropriate. He can't understand the circumstances which make it appropriate vs inappropriate, so he needs a standardized rule to follow in all circumstances.
Tuesday, 10 March 2015
Update on Fundraising and Plans for the Service Dog
We've begun our quest to raise $ 30 000 for National Service Dogs and after less than a month, we've managed to raise over $ 2000, which I think is a pretty good start.
This is more than a little daunting. I'm more of a drop-a-coin here and there than a major fundraising expert. I'm trying to put together some ongoing collection options but I wonder if it will be enough.
We're also starting to prepare for the dog's eventual arrival. I'm going to start pushing myself to do more regular walks with Alex. I've even talked to a neighbour about borrowing their dog to get him used to walking with the dog.
We've also looked at the logistics of family travel and will have to see about upgrading to a larger car. (I love my Yaris but 2 adults, 2 kids and a dog will be more than a little crowded ... ie, not enough room for luggage.)
This is more than a little daunting. I'm more of a drop-a-coin here and there than a major fundraising expert. I'm trying to put together some ongoing collection options but I wonder if it will be enough.
We're also starting to prepare for the dog's eventual arrival. I'm going to start pushing myself to do more regular walks with Alex. I've even talked to a neighbour about borrowing their dog to get him used to walking with the dog.
We've also looked at the logistics of family travel and will have to see about upgrading to a larger car. (I love my Yaris but 2 adults, 2 kids and a dog will be more than a little crowded ... ie, not enough room for luggage.)
Monday, 9 March 2015
Well Played, Mr. Bond
Over the last month, Alex has decided that simply taking the iPad and computer are much easier than having to actually earn them with pesky obedience. To counteract this train of thought, Dave and I locked the desired items with a passcode.
On the weekend, I noticed that Alex was leaning oddly to one side while Dave entered the passcode. Abruptly I realized what was going on and shouted a warning but it was too late. Alex had been watching Dave enter the code in a mirror.
Today I got confirmation that Alex does indeed have the code, having started up the iPad without any assistance.
Well played, Mr. Bond. Well played.
On the weekend, I noticed that Alex was leaning oddly to one side while Dave entered the passcode. Abruptly I realized what was going on and shouted a warning but it was too late. Alex had been watching Dave enter the code in a mirror.
Today I got confirmation that Alex does indeed have the code, having started up the iPad without any assistance.
Well played, Mr. Bond. Well played.
Friday, 6 March 2015
Alex Quote
Yesterday, I had lunch with one of my friends. When I got home, the therapist began to prompt Alex to ask where I was (this is part of his social skills training about appropriate interactions).
Therapist: Alex, ask Mom: Did you have a good time?
Alex: Yes!
Therapist: (trying not to laugh) No, Alex. Did you have a good time?
Alex: Yes, I did!
Therapist: (now trying very hard not to laugh) Alex, ask Mom.
Alex: Mom, did you go to lunch?
Therapist: No, did you have a good time?
Alex: Yes!
This kept going for a good five minutes, with Alex cheerfully answering the question for me every time. Eventually he did ask me if I had a good time and I could say yes but both of us were laughing so hard, I'm not sure how the lesson sunk in.
Therapist: Alex, ask Mom: Did you have a good time?
Alex: Yes!
Therapist: (trying not to laugh) No, Alex. Did you have a good time?
Alex: Yes, I did!
Therapist: (now trying very hard not to laugh) Alex, ask Mom.
Alex: Mom, did you go to lunch?
Therapist: No, did you have a good time?
Alex: Yes!
This kept going for a good five minutes, with Alex cheerfully answering the question for me every time. Eventually he did ask me if I had a good time and I could say yes but both of us were laughing so hard, I'm not sure how the lesson sunk in.
Thursday, 5 March 2015
Sensory Friendly Films to Return to Ottawa
Cineplex is taking up the mantle of Sensory Friendly films in Ottawa. It's been almost two years since a theatre has done this so I'll explain why this is a big deal.
In a sensory friendly screening, there are no teasers or ads at the front of the film. It goes right to the movie (or short cartoon if there's one attached to the film).
The lights are turned up and the sound is turned down, making it less overwhelming.
The people attending "get it" and will understand if your child is active, loud or otherwise distracting. I've seen kids taking a break to play games on their iPad without anyone having an issue.
We haven't been able to take Alex to the theatre since the sensory friendly films ended. I would have liked to take him to Frozen or The LEGO movie, but he had to wait until they were on video. It's been a little frustrating and so we're very happy to see them return.
The Cineplex at South Keys is hosting the films every 4-6 weeks on Saturday mornings. You can buy your tickets in advance (and I recommend doing so as the theatre usually only opens 5-10 minutes before the showing).
One area where Cineplex has improved is in which movies are being offered. Empire only hosted children's films. You could see the DreamWorks, Pixar and Disney offerings but little else. Cineplex looks like it will also be offering Marvel and other geek-films, which is great. There are a lot of autistic teens out there who still need the support of a sensory-friendly environment.
Currently listed:
April 4th: Cinderella
April 18th: Home
May 16th: Avengers, Age of Ultron.
In a sensory friendly screening, there are no teasers or ads at the front of the film. It goes right to the movie (or short cartoon if there's one attached to the film).
The lights are turned up and the sound is turned down, making it less overwhelming.
The people attending "get it" and will understand if your child is active, loud or otherwise distracting. I've seen kids taking a break to play games on their iPad without anyone having an issue.
We haven't been able to take Alex to the theatre since the sensory friendly films ended. I would have liked to take him to Frozen or The LEGO movie, but he had to wait until they were on video. It's been a little frustrating and so we're very happy to see them return.
The Cineplex at South Keys is hosting the films every 4-6 weeks on Saturday mornings. You can buy your tickets in advance (and I recommend doing so as the theatre usually only opens 5-10 minutes before the showing).
One area where Cineplex has improved is in which movies are being offered. Empire only hosted children's films. You could see the DreamWorks, Pixar and Disney offerings but little else. Cineplex looks like it will also be offering Marvel and other geek-films, which is great. There are a lot of autistic teens out there who still need the support of a sensory-friendly environment.
Currently listed:
April 4th: Cinderella
April 18th: Home
May 16th: Avengers, Age of Ultron.
Wednesday, 4 March 2015
Update on Toileting
Because no Wednesday is complete without a discussion of toilet training.
(It's true, think back to how many dissatisfied Wednesdays you've had in your life ...)
We've been working on Alex's training for almost two weeks now and it's been difficult. My laundry requirements have significantly increased due to accidents. And we're going through gummi bears like candy (I know they are candy, but the metaphor still works). Every fifteen minutes between 4pm and supper, he gets taken to the washroom to sit for a minute and earns a gummi bear. Most of those times, we will have a dribble of BM to deal with.
For every 5 BMs which end up in the toilet (whether directly or rolled over from underwear), Alex earns an ice cream. He's earned 3 in the last two weeks, which has had its own behaviour challenges.
I've spoken to the behavioural specialist and she agrees this needs to be tweaked. Right now, Alex is getting more rewards for effectively restraining himself rather than letting things flow, which isn't the main goal. She's working on a new plan.
I still find it frustrating to deal with the BMs but it's not as bad as I was afraid it would be. (Previously, after dealing with daily dribbles for over two years with no relief in sight, I was beginning to lose it emotionally.) I'm not as positive as the therapists but I think I'm doing all right.
I'm also wondering about our Incontinence Grant from Easter Seals. We can only submit receipts for diapers, not laundry, wipes, clothing or bedding. So, in effect, there is a bit of a penalty for those who are trying to toilet train their children since they have fewer receipts to submit. It's not a huge amount of money but I'm worried about losing it and then not getting it back if it turns out Alex can't be toilet trained.
But that's a later issue. For now, I need to focus on being positive and keeping the requirements consistent.
(It's true, think back to how many dissatisfied Wednesdays you've had in your life ...)
We've been working on Alex's training for almost two weeks now and it's been difficult. My laundry requirements have significantly increased due to accidents. And we're going through gummi bears like candy (I know they are candy, but the metaphor still works). Every fifteen minutes between 4pm and supper, he gets taken to the washroom to sit for a minute and earns a gummi bear. Most of those times, we will have a dribble of BM to deal with.
For every 5 BMs which end up in the toilet (whether directly or rolled over from underwear), Alex earns an ice cream. He's earned 3 in the last two weeks, which has had its own behaviour challenges.
I've spoken to the behavioural specialist and she agrees this needs to be tweaked. Right now, Alex is getting more rewards for effectively restraining himself rather than letting things flow, which isn't the main goal. She's working on a new plan.
I still find it frustrating to deal with the BMs but it's not as bad as I was afraid it would be. (Previously, after dealing with daily dribbles for over two years with no relief in sight, I was beginning to lose it emotionally.) I'm not as positive as the therapists but I think I'm doing all right.
I'm also wondering about our Incontinence Grant from Easter Seals. We can only submit receipts for diapers, not laundry, wipes, clothing or bedding. So, in effect, there is a bit of a penalty for those who are trying to toilet train their children since they have fewer receipts to submit. It's not a huge amount of money but I'm worried about losing it and then not getting it back if it turns out Alex can't be toilet trained.
But that's a later issue. For now, I need to focus on being positive and keeping the requirements consistent.
Tuesday, 3 March 2015
No Playdate
Yesterday, Nathan was due to have a playdate with one of his friends. It's a regular thing on Mondays after school, rotated between our house and theirs. Yesterday, was theirs.
He seemed excited and then halfway there, he began throwing a tantrum that he couldn't go on a playdate without a scarf. (What? Yes, without a scarf.)
I couldn't get through to him and eventually I had to call it off.
I've been feeling very nervous and uncomfortable about it since it happened. I worry that incidents like this are going to cost Nathan his opportunity for friendships. Sadly, this isn't an isolated case, he does it fairly regularly.
Nathan would probably be happy spending all his time on Xbox for now but I don't want him to suddenly realize this is high school and he's isolated and alone. I also wonder if I'm overreacting. Certainly I had the "don't ever show that you're upset or ask for things or else people aren't going to want to spend time with you" message drilled into me at a young age.
Either way, it's cost me a long night of tossing and turning and I still don't have any idea how to handle it.
He seemed excited and then halfway there, he began throwing a tantrum that he couldn't go on a playdate without a scarf. (What? Yes, without a scarf.)
I couldn't get through to him and eventually I had to call it off.
I've been feeling very nervous and uncomfortable about it since it happened. I worry that incidents like this are going to cost Nathan his opportunity for friendships. Sadly, this isn't an isolated case, he does it fairly regularly.
Nathan would probably be happy spending all his time on Xbox for now but I don't want him to suddenly realize this is high school and he's isolated and alone. I also wonder if I'm overreacting. Certainly I had the "don't ever show that you're upset or ask for things or else people aren't going to want to spend time with you" message drilled into me at a young age.
Either way, it's cost me a long night of tossing and turning and I still don't have any idea how to handle it.
Monday, 2 March 2015
To Snoop or Not to Snoop
This morning on the radio, I heard an interesting question. A 13 year old has just gotten her first cell phone and her first boyfriend. Mom went snooping through the phone and discovered the boyfriend had been texting "I love you". This raised some concerns with Mom, who is worried that the relationship may be progressing too quickly. However, she wasn't sure how to bring it up without admitting she'd been snooping on the phone.
People called in to give their opinions, most of which were a variation on "trust your daughter". A substantial minority said that mom should have made snooping a condition of having the phone, which would allow her to begin a discussion openly.
This may not be popular, but I disagree with both positions. As soon as the boys began using the computer, Dave set up a monitoring program for them. Every site they visit is logged into a report. We told them that we could see what they were doing. However, we also don't go looking unless we suspect a problem. (Frankly, we can hear what they're doing most of the time since Alex likes to play Elmo's Potty Time at full volume.)
Maybe I am overly paranoid about the dangers of the cyberverse, but to me it has replaced the park-guy-with-puppy as the primary tool for luring children. Even leaving aside the professional predators, there is cyberbullying and the stupidity of large numbers in groups. Luckily my kids aren't into the social aspect yet, but I know it will come and I will have to encourage it.
For the snooping Mom, my recommendation would be to use the information she has gleaned to start a conversation in some other way. For example, if she's worried the boyfriend might be using "I love you" to pressure the daughter into a physical relationship, then there are a number of books and teen films dealing with that issue. Pull one up and start talking about the characters and what happens. Talk about her own experiences with eager young boys when she was a girl. Emphasize that this can and does happen, no matter how good your feelings are.
I'm not a fan of snooping, but texting, Facebook and the internet in general are not private. It isn't the equivalent of reading a diary or listening in to someone's conversation. It's a public forum.
So that's my two cents on the issue.
People called in to give their opinions, most of which were a variation on "trust your daughter". A substantial minority said that mom should have made snooping a condition of having the phone, which would allow her to begin a discussion openly.
This may not be popular, but I disagree with both positions. As soon as the boys began using the computer, Dave set up a monitoring program for them. Every site they visit is logged into a report. We told them that we could see what they were doing. However, we also don't go looking unless we suspect a problem. (Frankly, we can hear what they're doing most of the time since Alex likes to play Elmo's Potty Time at full volume.)
Maybe I am overly paranoid about the dangers of the cyberverse, but to me it has replaced the park-guy-with-puppy as the primary tool for luring children. Even leaving aside the professional predators, there is cyberbullying and the stupidity of large numbers in groups. Luckily my kids aren't into the social aspect yet, but I know it will come and I will have to encourage it.
For the snooping Mom, my recommendation would be to use the information she has gleaned to start a conversation in some other way. For example, if she's worried the boyfriend might be using "I love you" to pressure the daughter into a physical relationship, then there are a number of books and teen films dealing with that issue. Pull one up and start talking about the characters and what happens. Talk about her own experiences with eager young boys when she was a girl. Emphasize that this can and does happen, no matter how good your feelings are.
I'm not a fan of snooping, but texting, Facebook and the internet in general are not private. It isn't the equivalent of reading a diary or listening in to someone's conversation. It's a public forum.
So that's my two cents on the issue.
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