We've had a lot of tooth activity in our house lately. Alex lost his tooth last week and Nathan lost one last night.
This morning, he came into our room, bouncing and excited because the tooth fairy had left him a note, a chocolate coin and two little animal toys.
He was super excited to show us all his loot and despite the fact that it was obscenely early in the morning, I was glad to share the moment with him.
These are the moments that are every parent's birthright. We don't always get them with special needs children (Alex couldn't care less about the tooth fairy) which makes them all the more precious.
Saturday, 29 June 2013
Friday, 28 June 2013
Forgetting the Boundaries
This is a trap almost everyone can fall into when dealing with someone with autism, especially high functioning autism. Things can appear so "normal" that it's easy to forget that we're dealing with someone with a handicap.
Nathan suffers more from this than Alex does. His ability to cope with change is phenomenal but he can still get overwhelmed faster than a typical child would. He's having a hard time right now with the transition between school routine and summer routine, not to mention the holiday disruption of Canada Day. It would be easy to get frustrated with him and assume he's misbehaving rather than dealing with something at the brink of his tolerance. (To my shame and regret, I don't always make the right call when deciding which it is.)
Like so many effortless things, setting Nathan up to succeed takes a great deal of behind the scenes work. We use social stories, we give him verbal and visual schedules, we give him space to express his emotions and most of all, we try to be consistent. When we say something is going to happen, we have to keep our word.
A friend of mine whose son also has high functioning autism was telling me about her frustrating discussions with a caregiver who doesn't quite understand the importance of predictability and reliability. Her son doesn't like having to leave the house. He likes having the comfort and security of his things around him.
My friend has been working on getting him to be comfortable going out on limited errands. He expressed some jealousy about his sister getting to pick up some trinkets from the dollar store, so she used it as a motivator: you can go out to the dollar store and pick up something for yourself.
The caregiver took the kids out and returned much later than expected. Her son was in complete meltdown, frustrated to the point of screaming. My friend was somewhat at a loss until she discovered that the caregiver had spontaneously added another store to the outing.
This may not seem huge on the surface but to her son, it was more than he could handle. My friend is furious, knowing that weeks of work may be down the drain. Why should he want to go out again when his trust has been violated in this way?
Most kids might be tired and cranky after being dragged to an extra stop on an outing. But they wouldn't be devastated by the change and they would have the verbal and social skills to be able to express their feelings.
Imagine being trapped in a foreign country with only the rudiments of a language. You've learned how to get your basic wants by trial and error without really understanding how things work. You have a system which works but is incapable of adapting to change. And suddenly there's a massive change. Any of us would feel overwhelmed and frustrated in that circumstance and we'd be completely unable to express that frustration or figure out a way to get things back to the way they worked before.
Remembering the inherent alienness of ordinary life to someone with autism can help us to understand a tantrum not as the whining of an entitled brat but as an expression of terror from a lost child.
Nathan suffers more from this than Alex does. His ability to cope with change is phenomenal but he can still get overwhelmed faster than a typical child would. He's having a hard time right now with the transition between school routine and summer routine, not to mention the holiday disruption of Canada Day. It would be easy to get frustrated with him and assume he's misbehaving rather than dealing with something at the brink of his tolerance. (To my shame and regret, I don't always make the right call when deciding which it is.)
Like so many effortless things, setting Nathan up to succeed takes a great deal of behind the scenes work. We use social stories, we give him verbal and visual schedules, we give him space to express his emotions and most of all, we try to be consistent. When we say something is going to happen, we have to keep our word.
A friend of mine whose son also has high functioning autism was telling me about her frustrating discussions with a caregiver who doesn't quite understand the importance of predictability and reliability. Her son doesn't like having to leave the house. He likes having the comfort and security of his things around him.
My friend has been working on getting him to be comfortable going out on limited errands. He expressed some jealousy about his sister getting to pick up some trinkets from the dollar store, so she used it as a motivator: you can go out to the dollar store and pick up something for yourself.
The caregiver took the kids out and returned much later than expected. Her son was in complete meltdown, frustrated to the point of screaming. My friend was somewhat at a loss until she discovered that the caregiver had spontaneously added another store to the outing.
This may not seem huge on the surface but to her son, it was more than he could handle. My friend is furious, knowing that weeks of work may be down the drain. Why should he want to go out again when his trust has been violated in this way?
Most kids might be tired and cranky after being dragged to an extra stop on an outing. But they wouldn't be devastated by the change and they would have the verbal and social skills to be able to express their feelings.
Imagine being trapped in a foreign country with only the rudiments of a language. You've learned how to get your basic wants by trial and error without really understanding how things work. You have a system which works but is incapable of adapting to change. And suddenly there's a massive change. Any of us would feel overwhelmed and frustrated in that circumstance and we'd be completely unable to express that frustration or figure out a way to get things back to the way they worked before.
Remembering the inherent alienness of ordinary life to someone with autism can help us to understand a tantrum not as the whining of an entitled brat but as an expression of terror from a lost child.
Thursday, 27 June 2013
I Have Handicapped Hair
The public pools are open in Ottawa again, marking the start of the cheap swimming season. This is the time of year when I must face the facts, no matter how difficult.
I have handicapped hair.
It's quite fine and curls into a natural afro with the heat. Too much washing, product or chlorine turns into brittle hay. Which means I have to decide between my vanity and my enjoyment of the water (and the boys' enjoyment of the water). Vanity has lost just about every year but that doesn't mean I don't feel the sting.
As I was driving home, I saw a couple of young girls with long, beautiful, shining hair down to their waists. While I can usually dismiss most actresses and models, telling myself their locks are probably hair extensions or wigs, this was the real deal right in front of me. I'll admit to my moment of jealousy.
I would dearly love to have beautiful, strong, thick hair. It's one of the things my heroines almost always get: hair thick enough to make a braid as thick as their wrists. Mine twists nearly into invisibility. Between the fineness and the curl, any attempt at layers or styling just makes me look scraggly. And pulling it back into a ponytail or bun creates a little corona of wispy broken fragments.
This is a fairly petty complaint and I'm well aware of that. But little things make up life.
I think if I ever get an author photo done, I'll go all out and get the extensions or something to make it look the way I wish it did. Until then ...
I'll be wearing a lot of hats.
I have handicapped hair.
It's quite fine and curls into a natural afro with the heat. Too much washing, product or chlorine turns into brittle hay. Which means I have to decide between my vanity and my enjoyment of the water (and the boys' enjoyment of the water). Vanity has lost just about every year but that doesn't mean I don't feel the sting.
As I was driving home, I saw a couple of young girls with long, beautiful, shining hair down to their waists. While I can usually dismiss most actresses and models, telling myself their locks are probably hair extensions or wigs, this was the real deal right in front of me. I'll admit to my moment of jealousy.
I would dearly love to have beautiful, strong, thick hair. It's one of the things my heroines almost always get: hair thick enough to make a braid as thick as their wrists. Mine twists nearly into invisibility. Between the fineness and the curl, any attempt at layers or styling just makes me look scraggly. And pulling it back into a ponytail or bun creates a little corona of wispy broken fragments.
This is a fairly petty complaint and I'm well aware of that. But little things make up life.
I think if I ever get an author photo done, I'll go all out and get the extensions or something to make it look the way I wish it did. Until then ...
I'll be wearing a lot of hats.
Wednesday, 26 June 2013
More Reasons to Save
Yesterday I was having a bit of a rant about the amount of gifts we end up buying at the end of the year for school related activities.
And today my washer let me know it is officially at the end of its lifespan.
Karmic retribution or psychic prediction? You can judge for yourself.
It's been teetering on the edge for awhile now. I'm having to run the spin cycle a half dozen times to get the clothes dry enough to stick in the dryer. Right now, it will only work with a half-load. Anything larger ... not going to happen.
Since I end up having to do 2-4 loads of laundry daily, this is a challenge. Thank the gods it's not winter because there is no way it would manage a soiled duvet.
Luckily, today also happened to be the last day of Sears Days. Which meant I picked up a new high-efficiency washer for $250 off the sticker price. So I paid what I would have for something low end but have got a good quality machine.
Of course, they don't actually have the darn thing in stock but I've been promised it will be delivered in two weeks. I'm guessing that really means six to eight weeks before it's sitting in my home. That's how it worked when we ordered a couch a decade ago. We were promised two weeks and it ended up being 5 months. This doesn't have any customization to it, so I'm hoping we're good.
On the down side, the money we've used to pay for the washer is money Dave and I were hoping to use for a weekend away for ourselves in the fall. But I keep telling myself that I'll be much happier with a functional washer than a weekend in a hotel.
I'll keep you all posted about whether or not Sears keeps its word on delivery times.
As I told them when they were giving me trouble about the couch: Think very carefully about how you treat me. I have a long memory, a big mouth and a wide circle of friends and family.
And today my washer let me know it is officially at the end of its lifespan.
Karmic retribution or psychic prediction? You can judge for yourself.
It's been teetering on the edge for awhile now. I'm having to run the spin cycle a half dozen times to get the clothes dry enough to stick in the dryer. Right now, it will only work with a half-load. Anything larger ... not going to happen.
Since I end up having to do 2-4 loads of laundry daily, this is a challenge. Thank the gods it's not winter because there is no way it would manage a soiled duvet.
Luckily, today also happened to be the last day of Sears Days. Which meant I picked up a new high-efficiency washer for $250 off the sticker price. So I paid what I would have for something low end but have got a good quality machine.
Of course, they don't actually have the darn thing in stock but I've been promised it will be delivered in two weeks. I'm guessing that really means six to eight weeks before it's sitting in my home. That's how it worked when we ordered a couch a decade ago. We were promised two weeks and it ended up being 5 months. This doesn't have any customization to it, so I'm hoping we're good.
On the down side, the money we've used to pay for the washer is money Dave and I were hoping to use for a weekend away for ourselves in the fall. But I keep telling myself that I'll be much happier with a functional washer than a weekend in a hotel.
I'll keep you all posted about whether or not Sears keeps its word on delivery times.
As I told them when they were giving me trouble about the couch: Think very carefully about how you treat me. I have a long memory, a big mouth and a wide circle of friends and family.
Tuesday, 25 June 2013
Looking End of Year Gift Horses In the Mouth
This is the last week of school and so I've been busy trying to make sure that everything is ready before I lose my government-sponsored child-free time.
One of the tasks on my to-do list is the end of year gifts for teachers. This is one area where things get exponential very quickly with a child with special needs.
Here is the list for Alex:
- 1 teacher
- 2 teacher's aides
- morning driver
- afternoon driver
Not to sound too Scottish here, but even at a relatively cheap $5 apiece, that starts adding up quickly. And these have all been good people who deserve better than a junky something from the dollar store. Every year I try to think of something nice but not too expensive, something which will remind them but not fill their house to overflowing.
I'm actually fairly proud of myself this year. We got the drivers gift cards for the local gas station. And for the teacher and aids, I did up this:
One of the tasks on my to-do list is the end of year gifts for teachers. This is one area where things get exponential very quickly with a child with special needs.
Here is the list for Alex:
- 1 teacher
- 2 teacher's aides
- morning driver
- afternoon driver
Not to sound too Scottish here, but even at a relatively cheap $5 apiece, that starts adding up quickly. And these have all been good people who deserve better than a junky something from the dollar store. Every year I try to think of something nice but not too expensive, something which will remind them but not fill their house to overflowing.
I'm actually fairly proud of myself this year. We got the drivers gift cards for the local gas station. And for the teacher and aids, I did up this:
The flowers are artificial but still nice looking. Each vase has a photo of Alex and a little note saying "Thank you for helping me bloom - Alex M - 2013" in it. (Cheesy, I know, but you can get away with cheese for kids.)
Each arrangement still cost under $5 for me to do, but it's a nice keepsake and the vases are a good enough quality to be reused.
I'm also proud of the gift I came up with for Nathan's teacher. She is diabetic so the usual chocolate standby wouldn't work. Instead, we gave her a nice bottle of nail polish. Hopefully, she likes it.
Sunday, 23 June 2013
June 29: Monsters University (Sensory Friendly)
On Saturday, June 29 at 10am, Empire Theatres in Kanata will be showing a sensory-friendly screening of Monsters University.
Empire Theatres is in the Centrum mall, right beside the Terry Fox OC Transpo stop.
For those who haven't been to one of these before, there are no ads or teasers. You can bring your own food and portable entertainment. The sound and light level will be adjusted to a comfortable level (they usually spend about a minute playing with it to make sure it's okay).
If your kid needs to wander, no problem. If your kid wants to have an iPad game to play while he or she watches, no problem (although most parents try to set the volume at a considerate level). We're all special needs parents and we all get it.
Empire Theatres is in the Centrum mall, right beside the Terry Fox OC Transpo stop.
For those who haven't been to one of these before, there are no ads or teasers. You can bring your own food and portable entertainment. The sound and light level will be adjusted to a comfortable level (they usually spend about a minute playing with it to make sure it's okay).
If your kid needs to wander, no problem. If your kid wants to have an iPad game to play while he or she watches, no problem (although most parents try to set the volume at a considerate level). We're all special needs parents and we all get it.
Friday, 21 June 2013
You Can't Handle The Tooth
We may have discovered why Alex was being extra destructive and it wasn't just about the upcoming summer transition or family stress.
He had a loose tooth.
Which is now in a box.
Alex has historically acted out when his teeth were loose. With his oral sensitivities, the sensation must just drive him crazy. Those same sensitivities also make it almost impossible to check what's going on. I honestly thought all his baby teeth were gone (and I'm almost certain the dentist agreed with me) but apparently there was one left.
He's been much calmer today since it came out.
Fingers crossed that this was the tipping point.
He had a loose tooth.
Which is now in a box.
Alex has historically acted out when his teeth were loose. With his oral sensitivities, the sensation must just drive him crazy. Those same sensitivities also make it almost impossible to check what's going on. I honestly thought all his baby teeth were gone (and I'm almost certain the dentist agreed with me) but apparently there was one left.
He's been much calmer today since it came out.
Fingers crossed that this was the tipping point.
Thursday, 20 June 2013
It's The Quiet Screams Which No One Hears
A friend complimented me lately, telling me that if she had to deal with everything going on in my life, she'd be screaming.
Here's the little secret: I do a fair bit of screaming.
For a long time, I squashed my negative emotions down into the tiniest mental box I could manage. I concentrated on practical things, fixing the problems.
That solution didn't work out so well for me. Like any sealed container of toxicity, the pain and anger began to leak out in unpredictable ways, mostly depression. I learned to mask it well and function, but it sucked all the joy out of my life.
I remember a moment where I was six months pregnant, cleaning out cat litter and crying hysterically. I literally could not bring myself to get up off the floor because I was completely emotionally exhausted. I had a child with autism and I had just begun to truly realize what kinds of lifelong challenges I would be facing. I had financial and extended family challenges as everyone tried to deal with the diagnosis in their own way. I was a hormonal sh*tstorm as I headed into the most uncomfortable trimester. And my own insistence on pretending to be the capable mommy had left me feeling isolated in my own hurt, grief and fear. I also had a cat who had just pooped in my shoes.
I did something really hard then. I asked for help. I found a therapist, worked with my social worker and infant development worker and slowly learned to put up boundaries, to accept that I wouldn't always have all the answers and most important, learned to accept my feelings as part of an emotional barometer, rather than signs of impending failure.
While I mostly choose to focus on sharing my goals and plans in this blog, I don't want to give the impression that there aren't days where I find myself wondering if I can cope or find myself weighed down by fear and frustration.
I've learned to accept those moments and discovered that if I allow them to run their course, then they are fleeting. Letting myself feel sad over a destroyed book isn't going to send me into a non-functioning depression. Recognizing that I feel angry because this isn't what I signed up for in the parenting line doesn't make me a bad parent and it allows me to regulate that anger to its proper place and source.
I don't know if this would work for everyone. But giving myself the time and space to scream has let me have more energy to focus on getting on with my life. Fighting it used to take almost all my energy. Now I give it space and remind myself that I won't feel like this forever. I may go to bed feeling hopeless but odds are good I'll wake up feeling better.
This is why I think parents of special needs children need emotional support. Clergy, therapists, anyone who can give them unbiased aid and help them find coping strategies. It makes all the difference in the world.
Here's the little secret: I do a fair bit of screaming.
For a long time, I squashed my negative emotions down into the tiniest mental box I could manage. I concentrated on practical things, fixing the problems.
That solution didn't work out so well for me. Like any sealed container of toxicity, the pain and anger began to leak out in unpredictable ways, mostly depression. I learned to mask it well and function, but it sucked all the joy out of my life.
I remember a moment where I was six months pregnant, cleaning out cat litter and crying hysterically. I literally could not bring myself to get up off the floor because I was completely emotionally exhausted. I had a child with autism and I had just begun to truly realize what kinds of lifelong challenges I would be facing. I had financial and extended family challenges as everyone tried to deal with the diagnosis in their own way. I was a hormonal sh*tstorm as I headed into the most uncomfortable trimester. And my own insistence on pretending to be the capable mommy had left me feeling isolated in my own hurt, grief and fear. I also had a cat who had just pooped in my shoes.
I did something really hard then. I asked for help. I found a therapist, worked with my social worker and infant development worker and slowly learned to put up boundaries, to accept that I wouldn't always have all the answers and most important, learned to accept my feelings as part of an emotional barometer, rather than signs of impending failure.
While I mostly choose to focus on sharing my goals and plans in this blog, I don't want to give the impression that there aren't days where I find myself wondering if I can cope or find myself weighed down by fear and frustration.
I've learned to accept those moments and discovered that if I allow them to run their course, then they are fleeting. Letting myself feel sad over a destroyed book isn't going to send me into a non-functioning depression. Recognizing that I feel angry because this isn't what I signed up for in the parenting line doesn't make me a bad parent and it allows me to regulate that anger to its proper place and source.
I don't know if this would work for everyone. But giving myself the time and space to scream has let me have more energy to focus on getting on with my life. Fighting it used to take almost all my energy. Now I give it space and remind myself that I won't feel like this forever. I may go to bed feeling hopeless but odds are good I'll wake up feeling better.
This is why I think parents of special needs children need emotional support. Clergy, therapists, anyone who can give them unbiased aid and help them find coping strategies. It makes all the difference in the world.
Wednesday, 19 June 2013
Who Gets to Decide on Abortion of Special Needs Child?
I found this article in the Globe and Mail about a couple who hired a surrogate to have their baby and then when they discovered the child was going to be special needs, told her to abort. The surrogate refused and went to an out of state hospital which didn't recognize surrogacy agreements so that she would have control over the baby.
There is a happy ending here. The baby was placed in a home through a special needs adoption agency.
But this bothers me on some very fundamental levels. First, I have mixed feelings about using prenatal testing to pass judgment on who gets to live. There are millions of wonderful, quirky, unusual people with disabilities and special needs. How many parents would have taken on that challenge by choice?
On the other hand, if a parent knows they cannot handle having a special needs child, should that child who will already have problems be condemned to a life of further difficulty and possible abuse?
There is a great deal of debate sparked by this case. The usual pro-life vs pro-choice debate doesn't interest me. To me, the true question is: whose choice was it to make?
The surrogate is the one who will have to undergo a traumatic and difficult medical procedure. She will have to suffer the physical and emotional after-effects.
But the parents are the ones who would have to take care of the child. In a very real sense, the baby was their child. If the mother had been carrying the baby and the couple decided to terminate, this wouldn't have been an issue.
It seems cruel to leave the surrogate without a choice but at the same time, it doesn't seem right for her choices to trump the parents' wishes. It would have been best if they could have all talked together about alternatives and arrangements, sparing everyone the drama and stress.
I believe every child deserves the best possible chance in life. In some ways, I think it might be better if everyone had to go through the difficulty of medical fertility treatments. Because then we would know that every child out there was desperately wanted. Maybe not always for the right reasons, but wanted nonetheless. There are too many children out there who are handicapped by lack of love, whose parents didn't want them.
Selective abortion is a slippery slope and should be treated with extreme caution. But if it saves a child a life of pain and neglect ... isn't that good? On the other hand, how could we possibly know what the actual outcome would be?
As I said, this bothers me. It challenges my wishful idealized worldview by reminding me that sometimes, the choices all suck. To me, that's where a society really shows its colours. Not when the decision is between something right and wrong, but when the decision is between awful choices.
There is a happy ending here. The baby was placed in a home through a special needs adoption agency.
But this bothers me on some very fundamental levels. First, I have mixed feelings about using prenatal testing to pass judgment on who gets to live. There are millions of wonderful, quirky, unusual people with disabilities and special needs. How many parents would have taken on that challenge by choice?
On the other hand, if a parent knows they cannot handle having a special needs child, should that child who will already have problems be condemned to a life of further difficulty and possible abuse?
There is a great deal of debate sparked by this case. The usual pro-life vs pro-choice debate doesn't interest me. To me, the true question is: whose choice was it to make?
The surrogate is the one who will have to undergo a traumatic and difficult medical procedure. She will have to suffer the physical and emotional after-effects.
But the parents are the ones who would have to take care of the child. In a very real sense, the baby was their child. If the mother had been carrying the baby and the couple decided to terminate, this wouldn't have been an issue.
It seems cruel to leave the surrogate without a choice but at the same time, it doesn't seem right for her choices to trump the parents' wishes. It would have been best if they could have all talked together about alternatives and arrangements, sparing everyone the drama and stress.
I believe every child deserves the best possible chance in life. In some ways, I think it might be better if everyone had to go through the difficulty of medical fertility treatments. Because then we would know that every child out there was desperately wanted. Maybe not always for the right reasons, but wanted nonetheless. There are too many children out there who are handicapped by lack of love, whose parents didn't want them.
Selective abortion is a slippery slope and should be treated with extreme caution. But if it saves a child a life of pain and neglect ... isn't that good? On the other hand, how could we possibly know what the actual outcome would be?
As I said, this bothers me. It challenges my wishful idealized worldview by reminding me that sometimes, the choices all suck. To me, that's where a society really shows its colours. Not when the decision is between something right and wrong, but when the decision is between awful choices.
Tuesday, 18 June 2013
Viking Raids Are The Key to Married Bliss
My ancestors were Vikings, people who understood the importance of relationships. Granted, mostly of the pay-us-or-we-destroy-your-village kind, but they kept a consistent message.
The cornerstone of the Viking raid was to capture people as slaves for fun and profit.
I don't endorse slavery, but kidnapping can occasionally be a good idea.
Like tonight: I kidnapped my husband.
A last minute plan came together and I took him to see an early evening showing of Now You See Me (which was quite enjoyable, like Ocean's Eleven but with magic).
Date night can be a real challenge for us, especially lately. We've generally relied on my parents as our primary babysitters but with my father out of commission and my mother taking care of him, we've been on our own. Dave's mother has been helping out but she has her own commitments.
Aside from that, our time together has been almost non-existent with the need to keep Alex constantly supervised. His destructive impulses haven't lessened and letting him rip through the drywall into the insulation or wiring just isn't an acceptable option. We've tried our best to repair and prevent but our efforts just aren't good enough.
I'll be honest and say it's put a real strain on both of us. We're not terribly fussy but we are both used to having regular downtime together in the evening. Now that time is occupied with getting chores done which can't be dealt with during the day and supervising Alex until he goes to sleep.
So I decided to take matters into my own hands and arrange to spend some time together. Dave would have objected had I told him beforehand, not because he didn't want to see the movie or spend time together, but because he believes in getting things settled before enjoying himself.
I've come to a different philosophy about it. There are always going to be challenges and obstacles. There will never be a good time when things are settled. So I avoid the dialogue and act with the unilateral decisiveness my ancestors excelled at.
And it works. Although it goes against every precept of shared communication and planning, it works. Dave is spared the anxiety of wondering if the plan will come together or if the outing will simply make more work. I get the time out which I desperately need. We both get to spend time together.
We didn't loot and burn any villages ... but there's always next time.
The cornerstone of the Viking raid was to capture people as slaves for fun and profit.
I don't endorse slavery, but kidnapping can occasionally be a good idea.
Like tonight: I kidnapped my husband.
A last minute plan came together and I took him to see an early evening showing of Now You See Me (which was quite enjoyable, like Ocean's Eleven but with magic).
Date night can be a real challenge for us, especially lately. We've generally relied on my parents as our primary babysitters but with my father out of commission and my mother taking care of him, we've been on our own. Dave's mother has been helping out but she has her own commitments.
Aside from that, our time together has been almost non-existent with the need to keep Alex constantly supervised. His destructive impulses haven't lessened and letting him rip through the drywall into the insulation or wiring just isn't an acceptable option. We've tried our best to repair and prevent but our efforts just aren't good enough.
I'll be honest and say it's put a real strain on both of us. We're not terribly fussy but we are both used to having regular downtime together in the evening. Now that time is occupied with getting chores done which can't be dealt with during the day and supervising Alex until he goes to sleep.
So I decided to take matters into my own hands and arrange to spend some time together. Dave would have objected had I told him beforehand, not because he didn't want to see the movie or spend time together, but because he believes in getting things settled before enjoying himself.
I've come to a different philosophy about it. There are always going to be challenges and obstacles. There will never be a good time when things are settled. So I avoid the dialogue and act with the unilateral decisiveness my ancestors excelled at.
And it works. Although it goes against every precept of shared communication and planning, it works. Dave is spared the anxiety of wondering if the plan will come together or if the outing will simply make more work. I get the time out which I desperately need. We both get to spend time together.
We didn't loot and burn any villages ... but there's always next time.
Monday, 17 June 2013
Being Paid To Go To Disney
I read this article in The New York Post about rich people hiring disabled people to avoid the lines at Disneyworld.
I have to admit, my first reaction was: if someone is willing to pay for me and my child to have a free trip to Disneyworld, then I would be happy to allow them to join us on our special needs pass.
However, that's not quite how this works. Disney has had a long-standing policy that individuals with special needs can get a special pass to avoid standing in line. It's a rare instance of a corporate win-win. Disney gets good press about being sensitive to children and people with special needs and the rest of their clientele isn't disturbed by major meltdowns. Good for business all around.
This appears to be a situation where families are paying an obscene hourly rate for an adult in a scooter to help them bump the line.
I'm less okay with this scenario.
If a rich family wanted to share the wealth by helping a special needs family go to Disneyworld (which most of us wouldn't be able to otherwise afford), that's a nice gesture. A little entitled, but still a nice gesture.
Just hiring a disabled adult is wrong. Yay for them for making money, but there's no good will to balance out the incredible entitlement. Why shouldn't you have to wait in line with the rest of us just because you have money? Almost everything else in your life is easier because you have money ... line waiting is one of the few democratic equalizers left.
I have to admit, my first reaction was: if someone is willing to pay for me and my child to have a free trip to Disneyworld, then I would be happy to allow them to join us on our special needs pass.
However, that's not quite how this works. Disney has had a long-standing policy that individuals with special needs can get a special pass to avoid standing in line. It's a rare instance of a corporate win-win. Disney gets good press about being sensitive to children and people with special needs and the rest of their clientele isn't disturbed by major meltdowns. Good for business all around.
This appears to be a situation where families are paying an obscene hourly rate for an adult in a scooter to help them bump the line.
I'm less okay with this scenario.
If a rich family wanted to share the wealth by helping a special needs family go to Disneyworld (which most of us wouldn't be able to otherwise afford), that's a nice gesture. A little entitled, but still a nice gesture.
Just hiring a disabled adult is wrong. Yay for them for making money, but there's no good will to balance out the incredible entitlement. Why shouldn't you have to wait in line with the rest of us just because you have money? Almost everything else in your life is easier because you have money ... line waiting is one of the few democratic equalizers left.
Sunday, 16 June 2013
Wednesday, 12 June 2013
June 31st ... What The ?
I've been being driven a wee bit crazy because my summer activities were not matching up on their dates. Things that were supposed to start on a Tuesday had dates which I thought were on a Wednesday.
Eventually I discovered the culprit:
Not a joke. An actual calendar that I picked up from a store with an extra day stuck at the end of June.
The fact that it's a Zen calendar just adds a certain creepy metaphysical quality. Do the Buddhists know something the rest of us don't? Do they get an extra day to enjoy before jaunting off to their Canada Day barbeques? (Take a minute to enjoy that mental image.)
Ah well, at least the July spread still starts on a Tuesday. :)
Eventually I discovered the culprit:
The fact that it's a Zen calendar just adds a certain creepy metaphysical quality. Do the Buddhists know something the rest of us don't? Do they get an extra day to enjoy before jaunting off to their Canada Day barbeques? (Take a minute to enjoy that mental image.)
Ah well, at least the July spread still starts on a Tuesday. :)
Tuesday, 11 June 2013
More Holes and More Spackle
It turns out Alex's love of peeling drywall was not a single time event. Instead, I've now had to spackle four different holes in his wall over the last week and a half.
Each hole has been centered on an electrical outlet, which makes me suspect that he's somehow managing to get behind the cover to peel those first, all-important strips. Dave and I have been talking about our options.
There are places which will bolt large sheets of clear plastic over your walls and others which will create a fitted plastic interior shell. Both of these options cost a lot of money, which we don't have. And even if we did, part of me rebels at doing something so intrusive and instituational. We may get there, but I'd like to know we've exhausted all other options first.
So once the current round of holes is fixed, I'll be caulking down the outlet covers to see if that fixes our problem.
Meanwhile, Alex's unsupervised time continues to be measured in infrequent minutes, which is putting a definite strain on Dave and I. There's no down time for either of us. Now it's either watching Alex or getting the chores done that we couldn't do while watching Alex.
I will be very glad once we can get this crisis under control.
Each hole has been centered on an electrical outlet, which makes me suspect that he's somehow managing to get behind the cover to peel those first, all-important strips. Dave and I have been talking about our options.
There are places which will bolt large sheets of clear plastic over your walls and others which will create a fitted plastic interior shell. Both of these options cost a lot of money, which we don't have. And even if we did, part of me rebels at doing something so intrusive and instituational. We may get there, but I'd like to know we've exhausted all other options first.
So once the current round of holes is fixed, I'll be caulking down the outlet covers to see if that fixes our problem.
Meanwhile, Alex's unsupervised time continues to be measured in infrequent minutes, which is putting a definite strain on Dave and I. There's no down time for either of us. Now it's either watching Alex or getting the chores done that we couldn't do while watching Alex.
I will be very glad once we can get this crisis under control.
Sunday, 9 June 2013
Saturday, 8 June 2013
Delightfully Subversive Children's Books
Anyone with a child knows how monotonous and repetitive children's books can be. Everyone's problems can be solved with a listen and a smile, bullies always turn out to be friends in disguise and the plot can usually be guessed from the title and first page.
Now, before I get lynched, I realize this is part of what children's books are supposed to do: present a simplified and idealized world to teach lessons.
However, once in a while, there comes a book which appeals to both the adult and the child. And somehow, my sisters in Toronto always seem to find them.
First there was I'd Really Like to Eat A Child by Sylvaiane Bonnio.
I opened it expecting to find the heart-warming tale of a little crocodile who wants to eat a child but discovers they're much more fun as friends.
Instead, I got the heart-warming story of a little crocodile who sets himself a goal and figures out how to achieve it. No children were actually eaten, but he realizes he has to eat healthily in order to grow up big and strong enough to eat a child.
Goal-setting, perseverance in the face of obstacles, promotion of healthy eating ... all the sorts of things a parent is looking for to teach their child.
And now we can add This Is Not My Hat by Jon Klassen to our list:
Now, before I get lynched, I realize this is part of what children's books are supposed to do: present a simplified and idealized world to teach lessons.
However, once in a while, there comes a book which appeals to both the adult and the child. And somehow, my sisters in Toronto always seem to find them.
First there was I'd Really Like to Eat A Child by Sylvaiane Bonnio.
I opened it expecting to find the heart-warming tale of a little crocodile who wants to eat a child but discovers they're much more fun as friends.
Instead, I got the heart-warming story of a little crocodile who sets himself a goal and figures out how to achieve it. No children were actually eaten, but he realizes he has to eat healthily in order to grow up big and strong enough to eat a child.
Goal-setting, perseverance in the face of obstacles, promotion of healthy eating ... all the sorts of things a parent is looking for to teach their child.
And now we can add This Is Not My Hat by Jon Klassen to our list:
The story of a little fish who learns that sloppily planned crime doesn't pay. He steals the hat from a larger fish, justifying it to himself. The larger fish follows him and gets the hat back. (It is implied that the little fish is eaten but not shown.)
A great story to spark talks about how it isn't right to take things which aren't yours, different points of view (an excellent exercise for children with autism, who can tend to assume that everyone knows what they know) and how sometimes people can be tempted to do things which they know aren't right.
Thursday, 6 June 2013
New Toileting Strategy
The gloves are coming off. And being replaced with different gloves.
We've been having a hard time getting our son to use the toilet for his BMs. We've tried social stories about the fun-loving Mr. Mucky who lives in his belly and likes to take waterslide rides. We've tried bribes of daily treats. We've tried having a regular schedule for effort. We've even tried mild punishments, such as losing computer priviledges for accidents.
No success and full day school is only 3 months away.
Being different is hard enough without throwing a hygiene issue into the mix. Kids are merciless and have long memories. And lack of toilet training is one of the few criteria the school board can use to put a child in segregated special education without challenge.
So we're trying a more hardball tactic. The closest we've come to success is with bribes of treats. So we're upping the treat.
He loves playing on the computer. So for now: no BM, no computer. I'm hoping this will build up his awareness of when he has a BM. Then as school lets out, we can up the ante to no BM in the toilet, no computer.
He doesn't like it thus far and feels it's grossly unfair. (Click! - parent checklist item one.)
Maybe it'll work. Maybe it won't. But it's the best solution I can see for now.
We've been having a hard time getting our son to use the toilet for his BMs. We've tried social stories about the fun-loving Mr. Mucky who lives in his belly and likes to take waterslide rides. We've tried bribes of daily treats. We've tried having a regular schedule for effort. We've even tried mild punishments, such as losing computer priviledges for accidents.
No success and full day school is only 3 months away.
Being different is hard enough without throwing a hygiene issue into the mix. Kids are merciless and have long memories. And lack of toilet training is one of the few criteria the school board can use to put a child in segregated special education without challenge.
So we're trying a more hardball tactic. The closest we've come to success is with bribes of treats. So we're upping the treat.
He loves playing on the computer. So for now: no BM, no computer. I'm hoping this will build up his awareness of when he has a BM. Then as school lets out, we can up the ante to no BM in the toilet, no computer.
He doesn't like it thus far and feels it's grossly unfair. (Click! - parent checklist item one.)
Maybe it'll work. Maybe it won't. But it's the best solution I can see for now.
Wednesday, 5 June 2013
Counteracting Destructive Impulses
All behaviour has one or a combination of four goals:
1) We enjoy the sensation. (Sensory)
2) We want to avoid something. (Escape)
3) We want attention. (Attention)
4) We want a particular item, service or experience. (Tangible)
Correcting escape, attention and tangible-oriented behaviours is fairly straightforward. Figure out which it is and then make sure the consequence doesn't follow. Child is screaming in the store for a toy - no toy. Child is reciting TV commercials for attention - no attention.
Sensory is the hardest one to combat. The action itself is inherently rewarding to the person.
Alex has a particularly challenging sensory behaviour: breaking things into tiny components so he can sprinkle the bits down in front of his eyes. I've mentioned it before, this is what caused the demise of Ralph the Jerk. I compare it to an alcoholic craving a binge. He knows he shouldn't. He knows he's going to get in trouble. He doesn't really want the negative consequences. But the impulse is too strong to contain.
Sadly, there is no 12 step program for autistic children with a bent for destruction.
I've tried offering him "safe" destruction targets, such as leaving him some paper in his room. But unfortunately, all that seems to do is stimulate his appetite. Complete avoidance of the behaviour seems like the only way to control it.
This means his supervision-free areas (his play room and bedroom) have to remain almost completely empty. He can bring toys into them but we can't leave things there unattended, even furniture isn't safe.
Last night, we caught him starting to tunnel through a large section of his bedroom wall under his window. Luckily, we got to him before he got all the way through the drywall. (The health impact and clean-up challenge of bits of insulation is not a mess I want to think about.)
I probably should have taken a picture but the hole is going to require a couple of coats of spackle before it can be repainted. Which means he's lost his room as a supervision free area for now. And means Dave and I get to take turns monitoring him until he goes to sleep tonight.
There are only a few tactics which work with sensory-driven behaviours. One is to introduce an incompatible behaviour (such as clapping to avoid nose-picking). The other is to prevent the behaviour in the hopes that the impulse will fade over time.
I can't figure out what an incompatible behaviour might be to prevent this. Which leaves flat out preventing the behaviour. Or, in other words, minimizing damage while waiting for him to grow out of it.
Hopefully he will either grow out of the impulse or gain enough intellectual empathy to understand why destroying things is not a good idea. I shudder to think what he might be capable of destroying as a full grown adult. We might not be able to keep him safe at that point. (I have visions of him breaking through walls and stripping live electrical wires.)
Here's hoping we can find a solution. Meanwhile, I'm off to Home Depot for more spackle.
1) We enjoy the sensation. (Sensory)
2) We want to avoid something. (Escape)
3) We want attention. (Attention)
4) We want a particular item, service or experience. (Tangible)
Correcting escape, attention and tangible-oriented behaviours is fairly straightforward. Figure out which it is and then make sure the consequence doesn't follow. Child is screaming in the store for a toy - no toy. Child is reciting TV commercials for attention - no attention.
Sensory is the hardest one to combat. The action itself is inherently rewarding to the person.
Alex has a particularly challenging sensory behaviour: breaking things into tiny components so he can sprinkle the bits down in front of his eyes. I've mentioned it before, this is what caused the demise of Ralph the Jerk. I compare it to an alcoholic craving a binge. He knows he shouldn't. He knows he's going to get in trouble. He doesn't really want the negative consequences. But the impulse is too strong to contain.
Sadly, there is no 12 step program for autistic children with a bent for destruction.
I've tried offering him "safe" destruction targets, such as leaving him some paper in his room. But unfortunately, all that seems to do is stimulate his appetite. Complete avoidance of the behaviour seems like the only way to control it.
This means his supervision-free areas (his play room and bedroom) have to remain almost completely empty. He can bring toys into them but we can't leave things there unattended, even furniture isn't safe.
Last night, we caught him starting to tunnel through a large section of his bedroom wall under his window. Luckily, we got to him before he got all the way through the drywall. (The health impact and clean-up challenge of bits of insulation is not a mess I want to think about.)
I probably should have taken a picture but the hole is going to require a couple of coats of spackle before it can be repainted. Which means he's lost his room as a supervision free area for now. And means Dave and I get to take turns monitoring him until he goes to sleep tonight.
There are only a few tactics which work with sensory-driven behaviours. One is to introduce an incompatible behaviour (such as clapping to avoid nose-picking). The other is to prevent the behaviour in the hopes that the impulse will fade over time.
I can't figure out what an incompatible behaviour might be to prevent this. Which leaves flat out preventing the behaviour. Or, in other words, minimizing damage while waiting for him to grow out of it.
Hopefully he will either grow out of the impulse or gain enough intellectual empathy to understand why destroying things is not a good idea. I shudder to think what he might be capable of destroying as a full grown adult. We might not be able to keep him safe at that point. (I have visions of him breaking through walls and stripping live electrical wires.)
Here's hoping we can find a solution. Meanwhile, I'm off to Home Depot for more spackle.
Tuesday, 4 June 2013
Freedom from Error
When I was young, I read a parenting article in Reader's Digest about being respectful of your child. The author had been mortified when his or her father had repeated a comment they'd made at a car dealership (the child had advised the father not to buy a station wagon with wood panelling because wood rots). The dealer laughed, the father laughed, the child grew up haunted by this event.
It was a story which haunted me, too. I was very sensitive, prone to misunderstandings and my parents had a wide circle of friends and family. Stories got told and retold and retold ... and retold. And the humilation could last years.
As I've grown older and had more time to reflect, it occurs to me that perhaps the focus of this particular piece of advice was wrong. After all, I'm part of the can't-be-wrong generation. Not because we're so awesomely infallible, but rather because we somehow absorbed the message that being wrong was somehow literally worse than death.
Personally, I blame the self-esteem movement. Studies have shown that when kids are praised for their accomplishments, they become afraid of failure. Kids who are praised on effort are more willing to take risks.
Maybe the reason this particular bit of scarring child humour had the impact it did is because being wrong was considered so mortifying. If a mistake is no big deal, everyone can have a good laugh. If the child felt that he or she was being singled out for having made an unacceptable error, then that would indeed be shameful.
My parental policy is to respect my children's feelings and treat them as real, regardless of how I feel about the situation. (No, those are not monsters under the bed, now Mommy wants some sleep!) But I've also tried to teach them that mistakes are how we learn. It's a hard one because deep down, I know I don't really believe it.
The mixed messages will probably require some Dr. Phil level counselling to resolve, but at least I'm making the effort.
My absolute home run success would be to look on my grown children who are unafraid to try and experience new things (autism withstanding), who are in touch with their feelings and aren't afraid to express themselves in socially acceptable ways.
Like all parents, I have a long time to go before I'll find out if my theories were good, crap or (most likely) somewhere in the middle. Check back in 20 years to find out if I'm right.
It was a story which haunted me, too. I was very sensitive, prone to misunderstandings and my parents had a wide circle of friends and family. Stories got told and retold and retold ... and retold. And the humilation could last years.
As I've grown older and had more time to reflect, it occurs to me that perhaps the focus of this particular piece of advice was wrong. After all, I'm part of the can't-be-wrong generation. Not because we're so awesomely infallible, but rather because we somehow absorbed the message that being wrong was somehow literally worse than death.
Personally, I blame the self-esteem movement. Studies have shown that when kids are praised for their accomplishments, they become afraid of failure. Kids who are praised on effort are more willing to take risks.
Maybe the reason this particular bit of scarring child humour had the impact it did is because being wrong was considered so mortifying. If a mistake is no big deal, everyone can have a good laugh. If the child felt that he or she was being singled out for having made an unacceptable error, then that would indeed be shameful.
My parental policy is to respect my children's feelings and treat them as real, regardless of how I feel about the situation. (No, those are not monsters under the bed, now Mommy wants some sleep!) But I've also tried to teach them that mistakes are how we learn. It's a hard one because deep down, I know I don't really believe it.
The mixed messages will probably require some Dr. Phil level counselling to resolve, but at least I'm making the effort.
My absolute home run success would be to look on my grown children who are unafraid to try and experience new things (autism withstanding), who are in touch with their feelings and aren't afraid to express themselves in socially acceptable ways.
Like all parents, I have a long time to go before I'll find out if my theories were good, crap or (most likely) somewhere in the middle. Check back in 20 years to find out if I'm right.
Monday, 3 June 2013
Nathan Quote of the Week
Nathan's class has been learning about healthy choices and building healthy bodies. He no longer wants crackers in his snack. Instead he wants healthy fruit.
I had been explaining to him about Avi being in hospital and Nathan thought about it. He then asked me to tell Avi to make sure to eat all his vegetables to be healthy.
I glanced down and noticed he had left all of his carrots on his plate from lunch.
Me: Aren't you going to eat your vegetables so you can be healthy?
Nathan: No, I'm already healthy.
I had been explaining to him about Avi being in hospital and Nathan thought about it. He then asked me to tell Avi to make sure to eat all his vegetables to be healthy.
I glanced down and noticed he had left all of his carrots on his plate from lunch.
Me: Aren't you going to eat your vegetables so you can be healthy?
Nathan: No, I'm already healthy.
Sunday, 2 June 2013
Warning List for Heart Issues
Symptoms for Heart Attack (Women)
- Shortness of breath
- Weakness
- Unusual fatigue
- Cold Sweat
- Dizziness
- Indigestion
- Anxiety
- Sleep disturbance
Symptoms for Heart Attack (Men)
- Chest pain or discomfort
- Pain in neck, jaw, arms, back or stomach
- Shortness of breath
- Lightheadedness
- Nausea
- Sweating
- Indigestion
I memorized these lists when I was 12, and they are surprisingly still current. (I was a paranoid and morbid little child.)
As you can see, the list for women is substantially different than the one for men and doesn't have the old Hollywood classic of grabbing one's left arm.
Doctors have a tendency to dismiss heart attack symptoms in women since the symptoms are more vague and could point to many different conditions. Knowing them yourself could make the difference one day.
Perhaps I'm still a little paranoid, but I think the message is worth getting out there.
- Shortness of breath
- Weakness
- Unusual fatigue
- Cold Sweat
- Dizziness
- Indigestion
- Anxiety
- Sleep disturbance
Symptoms for Heart Attack (Men)
- Chest pain or discomfort
- Pain in neck, jaw, arms, back or stomach
- Shortness of breath
- Lightheadedness
- Nausea
- Sweating
- Indigestion
I memorized these lists when I was 12, and they are surprisingly still current. (I was a paranoid and morbid little child.)
As you can see, the list for women is substantially different than the one for men and doesn't have the old Hollywood classic of grabbing one's left arm.
Doctors have a tendency to dismiss heart attack symptoms in women since the symptoms are more vague and could point to many different conditions. Knowing them yourself could make the difference one day.
Perhaps I'm still a little paranoid, but I think the message is worth getting out there.
Saturday, 1 June 2013
Game Changer: My Father's First Heart Attack
Earlier this week, my father had his first heart attack. He is doing quite well in the hospital and is expected to recover completely.
My father's family has a high history of heart attacks. His father had over a dozen before finally succumbing and his mother has had a high number as well, though she is still going strong.
Knowing all this, my father has been the poster child for a heart-healthy lifestyle. He exercises daily (on the day of the attack, he'd just finished a 25k bike ride and a cardio-strength workout), eats properly (low to no saturated fat, lots of whole grain, fish, no processed food) and has himself monitored (he had a full cardio workup two months ago which proclaimed him healthy ... they missed on that score.)
Despite his efforts, he still had the attack and very restricted bloodflow in the arteries to the heart.
This leads me to thinking about my own health. I do not live a heart-healthy lifestyle. My interests have always been more sedentary and I am a sucker for sweet and salty foods. I do visit the doctor regularly and am working on improving my health, but it's an uphill battle at this point.
I suspect that my genetics are working against me. Which means I'm going to have to brace myself for a battle. Doctors like lifestyle changes. They feel very comfortable focusing on them (and why not, it's in the patient's control and doesn't have the side effects of prescription medication). But with my father's heart attack, I have a strong suspicion that lifestyle alone is not going to cut it, even if I become the poster girl for reformed heart-healthy lifestyles.
Luckily, I also have time on my side. At least 10-15 years even if the worst occurs. Plenty of time to figure out my options.
My father's family has a high history of heart attacks. His father had over a dozen before finally succumbing and his mother has had a high number as well, though she is still going strong.
Knowing all this, my father has been the poster child for a heart-healthy lifestyle. He exercises daily (on the day of the attack, he'd just finished a 25k bike ride and a cardio-strength workout), eats properly (low to no saturated fat, lots of whole grain, fish, no processed food) and has himself monitored (he had a full cardio workup two months ago which proclaimed him healthy ... they missed on that score.)
Despite his efforts, he still had the attack and very restricted bloodflow in the arteries to the heart.
This leads me to thinking about my own health. I do not live a heart-healthy lifestyle. My interests have always been more sedentary and I am a sucker for sweet and salty foods. I do visit the doctor regularly and am working on improving my health, but it's an uphill battle at this point.
I suspect that my genetics are working against me. Which means I'm going to have to brace myself for a battle. Doctors like lifestyle changes. They feel very comfortable focusing on them (and why not, it's in the patient's control and doesn't have the side effects of prescription medication). But with my father's heart attack, I have a strong suspicion that lifestyle alone is not going to cut it, even if I become the poster girl for reformed heart-healthy lifestyles.
Luckily, I also have time on my side. At least 10-15 years even if the worst occurs. Plenty of time to figure out my options.
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