Thursday, 31 December 2015

Opportunity Lost

For the last several months, Alex has been saving up his allowance for a Bruder Cement Mixer truck.

It's a good toy, made of metal with lots of moving parts.  The price tag was $ 100, so he had to save $ 113 to cover the tax.

A few weeks ago, he seemed to lose interest in the savings.  I discovered why over the holidays: his grandparents had spotted the truck on sale and bought it for him.  We found it on a shelf at their house.

This was quite a frustrating discovery, more so than it may seem on the surface.  Alex doesn't get interested in too many toys.  He's just not a particularly acquisitive child.  He'd worked very hard on his savings, giving up trips to the Dollar Store, which he enjoys.  We were looking forward to counting up his money after the holidays and taking him to finally pick up his truck.

Dave and I ended up being up until about 2 am that night, trying to figure out if there was any way to salvage this.  We'd used this as an opportunity for delayed gratification, planning and being self-sufficient and independent.  After getting his Christmas money, Alex has $ 130.  Going into a toy store and being able to just pick something out isn't the same as saving for it.  We can't take the money retroactively, especially since there has been such a gap between the truck being bought and discovering it.  Alex isn't likely to find something else which interests him as much as the truck (especially since he's gotten tons of presents).  

Aside from the disappointment of losing this teaching opportunity, there's also the frustration with the lack of communication.  We had told his grandparents about the truck and that he was saving for it.  We'd even told them we didn't want anyone to buy him the truck for Christmas.  If they had contacted us when they saw the truck on sale, then there were a number of options we could have taken, including getting his money and taking him to the store right away.

They are sorry for having made the mistake and I know it wasn't deliberate, but it doesn't change the fact that this opportunity is gone and not likely to come again for quite awhile.

Monday, 28 December 2015

Christmas is Over

To the tune of "Christmas is coming, the goose is getting fat":

Christmas is over,
The family is all spent
Please don't ask us over
For another event

We had a really great time
We promise you it's true
But now we need alone time
And so do you!

It was a better than expected holiday, given the number of unusual circumstances.  We had both my sisters and their partners up as well as my grandmother from Calgary.  There were the usual kerfuffles of scheduling as people asked for last minute changes, etc.

The big challenge was that school let out almost a week before Christmas, which meant a week of entertaining the boys and also trying to get my work done for my dayjob.  (And, because I'm crazy, I'm also going through the final getting stuff ready to release my second novel (available for preorder now!).)

I had arranged for some help but last minute challenges meant I only had help for one of the four days I needed it.  I bit the bad-parenting bullet and let them have extra screen time so that I could get my work done, but that meant some behavioural challenges over the holidays.  (There's always a trade off.)

And yet, we all got through it and with a minimum of tears and tantrums and family drama on all side.  I'll take it as a win.

Monday, 21 December 2015

The Challenge of Finding Help

Leaving aside the challenge of getting money to pay for the help families with autism need, there's also a challenge in finding that help.

On average, it takes me 2-3 months to train someone to the point of being able to leave them alone with the boys.  So all the offers of "just call me to babysit" are nice (and appreciated as support) but aren't actually useful.  Often I'll ask those folk for help watching the boys while I'm busy doing something else (such as working or writing or dealing with a major home project).  I've discovered this doesn't sit well with a lot of people, so I've had to learn to be careful who I ask.

Then there's the challenge of predictability.  The boys don't do well with last minute changes, especially if excited.  So anyone I ask to work with them needs to be reliable.  

I've found there are a number of places I can find help: local high schools (I contact the principal to ask them to refer reliable, grounded teens who are looking for part time work), local colleges/universities (two of three higher education organizations offer programs for training workers to work with special needs children, they often want the resume addition), and local boys and girls clubs (such as Scouts), where again, I ask the leaders for suggestions.

I have to train these people to work with my boys and the turnover rate can be high.  (I'll be lucky if I get a year or more.)  But they're more plentiful (and often cheaper) than professional respite programs and workers.

Friday, 18 December 2015

Stealth Autism

I've often referred to Nathan as my "stealth autism" child.  He seems to be doing perfectly fine, coping well and then suddenly we hit a roadblock and get reminded that he's got a diagnosis as well.

We've been working on having him walk home on his own (or rather, under the supervision of several moms along the way).  Alex and I have been meeting him closer and closer to our house as the weeks have gone on.

The other day, we saw Nathan running cheerfully towards the house, only a few blocks away.  We waved cheerfully and began to walk towards him.  Suddenly, Nathan stopped dead and began to scream.  Alex and I hurried to find out what the problem was and Nathan ran away, back towards the school.

One of my transit-moms saw him and went to him.  He was sobbing with her saying that I'd told him he couldn't go home ever again.  She knew that didn't really sound like something I'd say but just held him.  When Alex and I caught up, he started to wail and scream again, so we retreated a little to give him time to calm down.  She talked to him and tried to get him to explain what was wrong but he just kept repeating he couldn't go home and that I was going to kill him.  (Again, not something I've ever said.)

Finally she got him calmed enough that I could sit down with him and get him to talk to me.  After a good twenty minutes, we got past the can't-go-home and imminent death threats, to a very simple truth.  He had been proud of getting almost all the way home by himself and wanted us to wait for him.

Now, the previous week, he had gotten upset when we stopped walking when we saw him.  He'd told us to keep coming and meet him.  

I did try to explain that he can't expect people to just know what he wants.  He has to tell us and ask us for what he wants.  I'm not sure how much of it sank home.  It's something I've told him before and one of the autism-areas we tend to have problems with for him: universal knowledge.  He assumes that everyone knows and understands what he's thinking and assumes he understands intentions based on his reactions.  (Ie, if he's hurt when someone bumps into him, then they did it on purpose).  

It was emotionally exhausting and a little worrying.  The wild accusations are a very troubling development for two reasons.  One, if he told someone who didn't know the family, we could end up under investigation.  Two, by using them when they're not true, he makes it less likely that anyone will believe him if someone ever is hurting or threatening him.

I'm glad that this time we got it all sorted out without any long term consequences.  But it's left me with some worry-fodder for the future.

Thursday, 17 December 2015

Adjusting Medication

Alex had his physical this week and it turns out he has now grown enough that his medication needs to be increased.  The doctor also suggested that we can give him a temporarily higher dose during predictable times of stress (Christmas, end of school, start of school).

I always considered medication to be a means of last resort.  I still do.  I think it's important to try behavioural methods before turning to chemical ones.  But sometimes, the medicine is necessary.  No one can learn if they feel as if they're constantly under assault or if their brain is always whirling with anxiety.  It doesn't matter how good the rewards are, it's just not possible.

I have a lot of concerns about Alex being on medication long-term.  There are always side effects and those can be significantly different than the ones discovered in the testing process while the drug was being approved.  I worry that we've masked the problem and when or if he comes off the medication, we'll discover an even deeper issue.  But I won't withhold something which is obviously helping him.

A few weeks after starting the meds, Alex calmed down significantly and began to make a lot of progress.  It was as if entire stretches of his brain were suddenly available to help him process the world around him.  From descriptions I've read of those who've suffered from high anxiety, that may not be far from the case.

We've tried reducing the amount once and immediately had behavioural issues again.  I'm still hoping that we'll eventually be able to teach him enough that he'll be able to cope with the world without drugs, but I'm also allowing myself to accept that if we can't, that's not an automatically horrible thing.  If this is what he needs to be happy and productive, then I will take it.

Wednesday, 16 December 2015

Success and Disaster: Comparing Yourself To Others

We all compare ourselves with others.  It's inevitable.

But as Dave and I were comparing notes about the Funfair and saw how different our views of the same events were (he saw it as a disaster, I saw it as a success), it got me thinking about how I need to keep that in mind when I'm talking to other families.

There are lots of inspirational stories, especially at this time of year.  They usually have the opposite effect on me, because my kids aren't doing as well as the kids in the stories.  But who's to say that things are going as well as is being presented.

Right after Nathan was diagnosed, we were in a newspaper article on the importance of early identification and intervention for children with autism.  As part of the article, it mentioned how Alex, then 5, was in a regular school and playing soccer.  It sounded very normal.

Of course, most of his day at school was spent in the Quiet Zone because he would get aggressive if any demands were put on him.  And his participation in soccer consisted of being on the same field as the other kids and kicking the ball into the woods if it came anywhere near him.  Not exactly the success story being painted in the paper.

I don't want to diminish Alex's accomplishments or challenges but I've learned how wide a gap the presentation and wording can make.  Without saying anything untrue, how something is said can influence a broad range of assumptions.  What I need to remember is that other people do that as well.

Tuesday, 15 December 2015

Defining Success and Disaster

Last weekend, we took the boys to the NAC's Funfair, a free concert where the orchestra plays Christmas songs.  I considered it a success, Dave considered it a disaster.

We arrived 15 minutes before the concert was due to start.  There weren't any seats left so we had to stand.  We found a spot relatively near the exit with a clear view of the stage.  Alex asked to climb on his grandfather's shoulders and Nathan asked to climb up on mine.  Alex stayed up for the first few songs while Nathan wanted down after the first few minutes.

Nathan spent most of the concert sitting on the floor behind the chairs, playing with the toys he'd brought.  Alex paid close attention when the music was playing but got bored and restless when they were talking.  He tried to get us to play with him, swinging him around or letting him play with our phones or climbing on top of shoulders only to wriggle and slide down.  I said no to the roughhousing play and no to playing with the phones.  I gave him the toys he'd brought to fidget with.

At the end of the concert, Alex wanted to ride the elevator and play with the pay phone.  There wasn't a phone, but he did get to go up to the balcony level at the NAC and back down again.

Those are the facts.  What makes it a success or failure depended entirely on our respective expectations.

I didn't expect there to be seats available when we arrived.  I actually thought it would be preferable to be able to make a quick and discreet exit in case of meltdowns, so I would have chosen to be standing near the doors anyway.  Plus it gave the boys more room to wiggle or sit or lay down without disturbing anyone.

I didn't expect them to sit quietly and listen to the music.  I knew they'd need distractions, which is why I brought the toys.  Watching the orchestra isn't necessary, so I didn't object when Nathan wanted to sit on the floor.  I knew he'd come up if something caught his attention.

I expected Alex to try and push the boundaries, so I set clear ones.  No screens, no wandering and no roughhousing.  

To me, it was a success because we were able to stay through the entire concert and there were no meltdowns.  To Dave, it was a disaster because our children were not behaving like the other children there, which he finds disrespectful to the performers and audience.  It's true, the boys were mildly disruptive, although not to a point where I would consider it necessary to abort.

It goes to show how difficult these kind of judgment calls can be.  We're both right in terms of our respective point of views.  The case can be argued either way.

Monday, 14 December 2015

Toileting Successes to Report

Our new toileting plan appears to have something going for it.  Alex produced twice in the toilet last week, once on Wednesday and once on Friday.  And Friday was substantial.

He got his rewards both days: Xbox time, unlimited screen time, a McDonald's ice-cream and no more having to sit on the toilet.

We've got one more week where we can make this work and then we'll have to take a break for the holidays.  I'd like to be more consistent but using the iPad only works if he's producing once a day in a narrow window.  If he's home all day, he tends to dribble.  Once school starts again, we'll have 5 days a week with a schedule.

I don't want to get too optimistic that this is a break-through.  We'll need a lot more than twice to actually begin to teach that this is how toileting is supposed to work.  (Any child needs between 15 and 30 successes to grasp any skill.)  But it's the highest level of success we've had to date and so I will definitely celebrate it.

Monday, 7 December 2015

Something's Gotta Give

No.  Not the movie with Jack Nicholson and Diane Keaton.

I'm swamped dealing with Christmas preparations, work stuff, kid stuff and getting my next novel ready for publication.  I've been struggling with keeping a balance but there's just too much to deal with.  Something's got to give and, this week, it's going to be blogging.

My apologies to everyone.  I hope you'll still be back next Monday to share in my family's adventures in the wacky world of autism.

Friday, 4 December 2015

Next plan for toileting

It's time to try a new phase of the toileting plan for Alex.  Now that he is reliably telling us when he has soiled himself and tends to have a single go-time during weekdays, we're going to try pairing screentime and toileting.

This is not something which our behavioural therapist recommends in most cases because it usually causes more complications than it helps.  Kids can become reflexively triggered to go to the bathroom during any screentime and it's not always an option.

In this case, we're trying it because Alex already has a tendency to go when he's got screentime, so we're going to try and transfer it to the toilet.

We also have concerns that we're still missing something.  We've offered lots of rewards and incentives and in other areas of his life, that's been enough to change his behaviour.  In this case, it isn't, so there's something we're missing.

I'm thinking that if this doesn't work, it's time to abandon the idea that he will learn to use the toilet in a predictable way.  We'll have to consider other strategies like part-time diaper usage and teaching him to clean himself up.  Or figure out how to build a standing support so that he can stand and use the toilet.

It's frustrating.  We've been trying to solve this problem for almost seven years now.  We've tried everything we could think of that had the remotest possibility of success.  And no luck.

A small percentage of kids with autism are never toilet trained.  Even if they are very intelligent and socially high-functioning, it limits what they are able to do in life and the supports they can be offered.  Most day programs will not accept someone who is not toilet trained and the same for most residential programs.  The ones that do tend to have residents who are much lower functioning than average, so they're not great places to be.

Thursday, 3 December 2015

Social Limitations

I was talking with another parent yesterday and they were explaining how their child gets very upset whenever they see another person who is upset or sad or angry.  It got me thinking about social cues.

My first thought was: why don't I get upset when I see someone crying?  I may feel sad.  If it's a heart-tugging commercial or poignant situation, I may even have tears well up.  But I don't begin to get anxious and sad myself every time I see someone who is upset.  So what's the difference?

I'm no expert, but I think the difference lies in the social cues.  Even as a child, I could look at another child crying and see: are the adults going to comfort him or her?  I could distinguish between mad-crying and sad-crying.  I could tell if there was something I needed to be upset about as well.  There were dozens of cues I could pick up to determine if this situation was something I needed to worry about.

Imagine not having that.  Every tear is a potential signal of an explosive tantrum.  Or a dangerous situation.  Without signals to the contrary, it's bewildering and overwhelming.  There's no predicting what will happen next and humans do not do well in a state of uncertainty.  It's one of the most reliable torture techniques.

The state of uncertainty would provoke a lot of tantrums and acting-out as the child desperately tries to make sense.  It would encourage them to find artificial means of control, just to reduce the amount of chaos.

It makes me wonder how much of the challenges of autism can be boiled down to not being able to pick up social cues?  It's something which neurotypical people do so thoroughly that we forget that the signs aren't actually obvious.

On the other hand, the signs are there.  They can be taught.  Even a child can be taught to look for certain telltale signs to help them to interpret what's going on around them.  Maybe this is a potential therapy option for kids with autism, something which can be taught early on enough to allow them to proceed in a much less frightening world.

I'm not an expert.  I don't know if my musings here are old hat, long worn out by autism workers, or if there's actually something to this.  I've personally tried (and continue to try) to teach my kids various body language and facial signals so they can interact appropriately.  Will it help?  I won't know for years, not until they're adults.

But it's definitely something interesting to think about.

Wednesday, 2 December 2015

Increasing Awareness

Lately, we've been seeing more and more signs that Alex is more aware socially than he has been before.  It's a good sign for his continuing development.

Yesterday, he tried to switch the calendar over to December.  Unfortunately, the nail holding the calendar up is old and has a tendency to retreat back into the wall under the slightest pressure.  So the whole calendar started to come down.

Alex immediately got upset and started trying to put it back up.  We were busy with another situation and called to him to leave it, that we'd take care of it in a minute.

He continued to try and put it back up, getting increasingly frustrated.  He tried until we came to help him.

A few years ago, he likely would have ditched the calendar as soon as it became a problem.  Certainly once he was told that it was okay to walk away.  Instead, this time, he seemed to have recognized that he'd caused a problem and was determined to fix it.

Now, this isn't definitive.  This could also be an example of compulsive behaviour.  The calendar should be at December and it's not, and Alex can't/won't rest until it shows the proper time of month.  However, we've seen other incidents as well.  Each can be explained individually in other ways but the fact that we are starting to see more suggests that maybe he is starting to be more aware of his interactions with other people.  Possibly even grasping the idea of reputation, that others can have a particular view of him.

We won't know for sure for quite awhile.  It's going to take a lot of skeptical observation to build up a case one way or another.

This is one of the real challenges I have.  People like to be encouraging and seize on these kind of situations as potential breakthroughs.  But I always have to err on the side of caution because if I assume he is capable of something which he is not (such as when we thought he was understanding more language than he actually was), then I set him up for failure and frustration.  He needs to prove it, not just beyond a reasonable doubt but beyond a shadow of a doubt.

Tuesday, 1 December 2015

Minor Frustrations with Fundraising

I had spoken to Nathan's school to ask if they would be willing to do a fundraiser for Alex's service dog.  Initially I got a positive response, but then someone on the council said they couldn't possibly endorse raising money for a student who isn't at the school.  I countered that the dog would be of benefit to the whole family, that we don't personally receive any money so it goes to a registered charity.  I suggested that even if they weren't comfortable with holding a fundraiser, then perhaps it could be included in the monthly school newsletter, just to let families know it was an option.

No response.

Today I got the December school newsletters and they're raising money for the local Food Cupboard and Toy Mountain.  Those are both worthy causes but I can't help but notice that they probably don't directly affect students at our school.

Maybe they're still considering for Alex's dog, and I hope so.  But I find the politics of fundraising to be quite frustrating.  Actually, I find politics at any level to be frustrating.  I'm much happier dealing with groups and individuals who are more focused on getting something done and done properly than in how it might look.

Monday, 30 November 2015

New Year's Autism Charity Event

Pass the word around:

Children at Risk and Quickstart Autism are having a casino-night fundraiser on New Year's Eve.

Tickets are $ 159 each and include:

An entry for the door prize of a two week all-inclusive vacation
A 4 course meal
$1000 in Charity Bucks to use for gambling and the auction
A glass of champagne at midnight
Dancing and live music

It's at the Ottawa Conference and Event Centre.  The reception starts at 6:30 and dinner starts at 7:30.

There are reduced rates at the hotel if people want to book overnight.

Thursday, 26 November 2015

Holiday Giving Time Suggestion

I feel a little awkward about this but I'm going to put it out there.  This is the season when people decide to make donations to various charities.

If you know anyone who is looking for an opportunity to really help, please pass this post on to them.  

We've been raising money for my son, Alex, to have an autism service dog.  We've been asked to raise $ 30 000, of which we have raised $ 13, 500.

With a dog, our family could do more things together as a unit, like go to the grocery store or out to the park.  Alex would have the opportunity for more independence and he would have a companion.  We can tell that he's lonely since he's developmentally far behind his peers and too large and excitable to play with kids at his own developmental level.

The dogs are provided by National Service Dogs in Cambridge, Ontario.  They do not charge the families (we'll receive the dog regardless of how much money we raise) but depend entirely on donations.  If we can raise the $ 30 000, then another family will be able to receive a dog and gain their own independence.  The money covers the intensive two year training process which make these animals such valuable companions.

Alex is the only child in Ottawa currently on the waitlist for a dog.  You can donate online directly to National Service Dogs in Alex's name here.

Our friends and family have already been incredibly generous.  We can't thank them enough for all of their support.  Every little bit helps get Alex just a little closer to meeting his new best friend.

Thank you.

Wednesday, 25 November 2015

Parent Teacher Interview results

Last week we had our Parent Teacher Interviews for both kids.  And for once, we're not dealing with any crises (knock on wood).

Alex is settling back into full days at school and they tell us he's one of the best behaved kids in the class.  He's been integrated with a regular Grade 6 Core French class once a week and seems to be doing well.  They've considered other options but he's far ahead of his peers in math and far behind in English.  In the spring, they'll consider having him join the choir as they practice for the spring play.

Next year is still in doubt.  We won't know where Alex is going until June.  The expectation is that he'll be in a new autism program at our local high school but we won't know if that program has been approved until June.

Nathan is also doing well, despite not having an aide this year.  His teacher tells me that he's doing much better at focusing and settling into his work.  There are still times he's distracted but she's teaching him how to manage that himself (like sitting in a corner desk if kids are playing on the computer while he's trying to work).  She thinks he might do better if he had a laptop to type on instead of writing by hand, so she's put in a request to the Board.  We'll see what happens.

It's nice to know they're both doing well and controlling any impulsive or aggressive behaviour.  It lets us concentrate on other issues.

Tuesday, 24 November 2015

Perpetual Field Trip Volunteer

Most parents, when they get the field trip forms, get to decide: do I want to go along on this or not.  I usually have a note attached asking me to come along and manage Nathan.  So I've been on every field trip for junior kindergarten, senior kindergarten, grade one and grade two.

We recently got a permission form for the next field trip and to my surprise, I didn't have a note suggesting compulsory attendance.  Which was good since I have two meetings at work on that day, and while I know my bosses would be accommodating, I didn't want to have to ask for more favours.

They're giving it a try to see if Nathan does all right with a non-me volunteer.  If this is the case, I will then have the same choice as all the other parents.

On the one hand, it's been nice getting to participate in all these extracurricular activities.  On the other, it's going to be nice to have the option of not-participating sometimes.  

Monday, 23 November 2015

I'd Like To Believe You But Your Pants Are On Fire

Yesterday, Nathan got sick with a bad cold.  He's still home sick today.

When Alex realized Nathan wasn't going to school, he told me "Alex sick.  Alex stay home."

I dutifully felt his forehead, took his temperature, and listened to his breathing.  All perfectly normal.  No fever, no cough.  His appetite and energy levels are good.

So, despite my general policy of always believing my children ... this time, I must decline.  

Thursday, 19 November 2015

Tantrum Results

On Monday, I wrote about Nathan's big morning tantrum but didn't have time to talk about how I dealt with it.  I've gotten a couple of questions, so I thought I'd go over it.

Nathan has always needed some time to wake up.  Normally, it's not a problem because he wakes up earlier than everyone else and he can take the 20-30 minutes to gradually become alert.  Then he's a bouncy, cheery morning person.

When I saw he was still asleep, I knew I had to go slowly.  The best technique is to gently touch his feet or hands, which starts to bring him up out of sleep.  Then I have to keep doing it at irregular intervals to stop him from falling back asleep.  I can't talk to him, can't make a joke or do anything too obvious that I'm waking him up.

On Monday, as soon as I touched him, he began to growl and scream at me.  So I knew: not good.  At that point, I've lost the waking-up-with-a-modicum-of-cheer battle but I can't afford to lose the entire waking-up war.  I had to keep on preventing him from falling back asleep, which kept triggering new screams, throwing things and growling.

I had a real dilemma.  When we have a bad wake-up like this, it often means a very bad day.  Should I send him to school and risk a major set-back to our good progress?  What would I do with him if he stayed home (need to not reinforce this behaviour by letting him have a fun day playing at home)?  How far do I push him?  After forty minutes, I had real concerns that we didn't have time to get ready for school.  Do I force him to get dressed and carry him kicking and screaming to the school ground?

I decided that he had ten more minutes before I'd have to force the issue.  Luckily he managed to calm down enough to be able to speak.  He asked to go back to sleep and I told him there was no more time.  I also warned him that there wasn't going to be time to play, that he'd used it all up having his tantrum.  He started to complain that was unfair, I cut him off and told him I wasn't listening to it.  That he'd made a choice to throw a tantrum rather than tell me what the problem was.

We got him to school and the teacher said he had a quiet day but an okay one.

Tuesday, 17 November 2015

Sensory-Friendly Santa Times

Quickstart has arranged for visiting times with the Santas at local malls for kids with autism.  It's before the mall officially opens, so it will be quiet and there won't be much of a wait.  Santa will also have been briefed on dealing with children with autism.

Carlingwood and Rideau have times posted in November, while St. Laurent and Hazeldean are to be confirmed for December times.

Monday, 16 November 2015

Tantrums and Tears

This morning, Nathan didn't want to wake up.  From the look of his room, he woke up sometime in the night and began to read (I'm surprised I didn't hear him as he usually likes to make sound effects as he reads).  From how tired he was, I'm guessing 2-3 hours of lost sleep.

It took 45 minutes of tantrums to get him out of bed.  Which has left everything else this morning short-changed and rushed.  Including blogging (sorry).

Friday, 13 November 2015

Nathan Quote: LOL

Nathan hasn't been feeding me as many good lines of late but yesterday he gave me a doozy.

We were sitting and watching a funny cat video on YouTube when Nathan announced: "That's loyal."

Me (understandably confused): Loyal?

Nathan (laughs): Yeah.

Me: What do you mean?

Nathan: It's loyal.  See, it says so right there.  (He points to the comments, the first one of which is LOL)

Me: Nathan, that's L-O-L, it means laugh out loud.

Nathan: Right.  L-O-L. Loyal.

At which point I lost all parental credibility in a fit of laughing.  

Thursday, 12 November 2015

Biting Dilemma

For once, our kid isn't on the "aggressor" end of a school incident report.  Earlier this week, we were notified that one of the other children in Alex's class had bitten him while they were sitting in circle.  The teachers let us know that Alex did nothing to provoke the incident but they were proud of how he handled it.

Rather than hitting the child back, Alex immediately jumped up and shouted "No biting!" before moving to an empty seat on the other side of the circle.  So he alerted the teachers and removed himself from the situation, which is exactly what we would want him to do.

He wasn't hurt.  I would guess that the biter mostly got a mouthful of his sleeve.

But it's put me in a position I haven't really been in before: the parent whose kid could have been hurt by the aggressive acts of another child.  As I mentioned before, I'm usually on the other side of the equation.

It's left me wondering.  Does the child bite his/her parents or siblings at home?  Is this a surprise to them?  Was she acting out a routine or was this intended to gain attention or an attempt to deal with some sensory issue?  

Where most parents jump on the warpath when their child is hurt, I think I have more compassion.  I understand how even the best intentioned and careful parents can be helpless to entirely prevent these behaviours.  This isn't a malicious attack or a case of bullying or even neglectful parenting.  I'm sure it's something they are working on and I'm sure they feel just as horribly guilty as I always felt when Alex hurt someone else.

Parenting isn't a guaranteed success.  It's not like cross-stitch or knitting where if one pays attention and puts in the work, the result is as promised on the front of the box.  Sometimes we can be doing everything humanly possible and a few things which aren't and still it will not be enough.

I've faced the screaming parents accusing me of being a monster, raising a monster and all the variations within.  As if I deliberately chose for their child to be hurt.  I've blocked the ones who tried to inflict a little eye-for-an-eye on Alex.  And I've lost my temper and hurled a few accusations of my own.  It did nothing to help the situation but it did show Alex that I believe he is worth protecting, even if he has done something wrong.  It shows him that he is not abandoned because of his actions.  I'm his mother and nothing will ever change that, no matter how horrible I feel about any harm he has inflicted.

Wednesday, 11 November 2015

Blame the Screens

A work colleague sent me a link to this article from Psychology Today which blames all of societies' ills on screentime.  As you may guess from my introduction, I am not convinced and am actually rather annoyed by the irresponsible representation.  First of all, any solution which suggests that there is only a single cause to multiple issues gets an automatic red-alert wishful-thinking alarm from me.  Second, the article uses a lot of alarmist language but not a lot of actual explanation or scientific backing up.  Some of what they talk about does have valid points but the whole thing strikes me as overly dramatic and intended to start parenting panic.

There are six main points in the article:
1) Screen time disrupts sleep and desynchronizes the body clock.  This is based in truth.  Any light after dark disrupts the natural sleep rhythm and body clock, which means that this has been a problem since humans first figured out fire.
2) Screen time desensitizes the reward system.  Again a nugget of truth that the rapid fire succession of images sets up a trance state which feels relaxing and good.  However, the assertion that this somehow destroys the capacity to ever concentrate or function is absurd.
3) Screen time produces light at night.  Same point as number 1 but dressed up in slightly different clothing.
4) Screen time produces stress reactions.  They don't even try to explain this one but instead talk about how high levels of stress can create problems.  There's no mention of how screen time creates a stressful situation.
5) Screen time overloads the sensory system.  Again, no tie in with screen time but the section talks about how poor focus can make it difficult to control impulses or cope with unexpected changes.
6) Screen time reduces physical activity.  Well, duh.  That's a valid issue to be concerned about but it's not a catastrophic one.

I know from my own experience and watching my children that screen time hypes us up but is also paradoxically soothing.  I've talked about the challenges I have in managing screen time and how it is the cause of major tantrums.  That's consistent with it being a major reinforcer.

However, to suggest that it is the root of all evil rather misses the point.  It needs to be managed and controlled but I believe our lives would be significantly poorer if we got rid of it.

Screen time is story time, whether it's video games, movies, television, or YouTube clips.  It may not always be awesome and uplifting stories, but life isn't like that.  By sharing in bits of different experiences, my kids and I can move beyond our own limited corner of the world.  Anything which encourages its participants to broaden their thinking and open their minds can be a good thing.  

Tuesday, 10 November 2015

Flu Shot Humiliation

Yesterday I took Nathan to get his flu shot.  It turned into a very loud, very embarrassing procedure.  

I knew he was nervous so I did what I could to increase the odds.  I took him out of school so that there would be fewer people and I wouldn't have to bring Alex with us.  I promised him a doughnut if he behaved with dignity.  I showed him video of other children getting injections (and not screaming).  I talked to him about how important it was to tell me if he was afraid rather than throwing a tantrum, which he promised to do.

None of it helped.

As soon as he saw the needle, he began to shriek that we were going to kill him and that he didn't want it.  I held him still and the nurse did it quickly but it was loud enough to make my ears ring.

On the one hand, I as a parent wanted to comfort my obviously terrified child.  On the other, I was embarrassed that he was so disruptive (he sparked a wave of crying and terror in the other children waiting).  I was frustrated that this was happening despite my precautions.  I was disappointed he'd broken his promise to talk to me instead of screaming.

I'm not sure if I'm expecting too much of him developmentally.  I don't know if there's a moment where the fear can be staved off and redirected or if it just swamps him without warning, overwhelming his system.  If it's the latter, that's not a great sign since it means he likely won't be able to control his reactions, which I could see being very limiting in the future.

I worry about how quickly he can go from apparently enjoying himself to full-on meltdown.  With Alex, there are signs of the impending apocalypse.  Nathan can hit critical in a split second with little to no outward sign.  I'm presuming that things build up inside but I can't get him to tell me what it feels like from his perspective.

I have no idea what else I could have done and that leaves me feeling like I must be missing something.

Friday, 6 November 2015

Flipping To The Other End of Life

Lately there's been a lot of talk in my family about an older relative who is well into her nineties and beginning to show signs of dementia.  She's always been independent and strong, but increasingly, she needs help with day to day life, which gets doubly frustrating when she can't remember what's happened ten minutes earlier.

I'm not getting involved in the debates over what kind of support to set up as I haven't seen this relative for many years and I'm not involved in the day to day management.  But in listening to the people who are, something struck me.

The issues they're talking about are similar to the ones I'm dealing with.  If someone takes her out, she will wander off (her mobility hasn't been impaired, so she's quite quick) but can't remember what city she's in.  She needs clearly visible schedules to remember what's going to happen in a given day or else she gets flustered and upset.  Caring for her has become like caring for a special needs child, it doesn't matter what you think she "should" be able to do, instead you have to concentrate on what she can actually do and make accommodations.

It makes me wonder if the recent increase and understanding of how to deal with autism could have longer reaching effects than we realize.  Perhaps many of the techniques we use to help children with autism cope with daily life could be used to help the elderly or those with Alzheimer's.  I honestly don't know enough to say whether or not this is an insight or completely misses the point, but it has got me thinking.

It's also got me thinking about what could potentially happen as Alex gets older.  Dementia does run in some family branches, so what will happen if he loses his mental faculties as he gets older.  Given the already challenging situation, it could make finding someone or somewhere to take care of him nearly impossible.

It's a long time in the future and I refuse to borrow trouble, but it's one more brooding point to add to the list.

Wednesday, 4 November 2015

Setback for Full Day School

I spoke with Alex's teacher on Monday and she let me know that they had concerns about Alex going back to school full time.  We've been gradually lengthening the day as therapy finished and on Tuesday, he was due to start full time.

Instead, his teacher would like us to continue picking him up an hour before school ends.

He's definitely had a lot of trouble with this finish time.  When we initially lengthened the day by an hour, he adapted very quickly after two days.  With the second hour added, he was still having trouble after two weeks, although it was improving.  I can understand the school's decision to delay adding the final hour.  It will give Alex more time to adapt and adjust.

Of course, it means some trouble on my end.  The main issue is that now the therapists have moved on to other clients, so I don't have anyone to help me with Alex.  If he comes home and is allowed to basically have free play, I risk inadvertently reinforcing the shorter school day.  He's smart and quite capable of self-triggering some tantrums if he thinks it gets him something desirable.

I've decided to run errands with him, which he doesn't hate but certainly isn't as fun as playing.  The school wants to do this for a week or two, which I'm willing to play along with.  After that, though, I'm going to need a new plan.  If Alex is coming home early and I have to manage him, that means no writing time for me, which is okay temporarily but not long term.  Not to mention the fact that I'm definitely going to run out of errands to take him on.

I've suggested to the school that we add in a reinforcer for a well-behaved afternoon.  They've agreed and Alex will be earning his bus ride tokens for the afternoon.  Once he's earned his "magic" number, I will take him on a bus ride after school.  (We use a random number which we don't share with Alex.  It prevents anxiety tantrums as he gets close to his total.)

I've also asked the therapists for suggestions for activities to do with Alex which wouldn't be reinforcing.  

The school is pretty good with him, so when they ask for some extra time, I know it's not a request they make lightly.  Something in my gut tells me that Alex is going to continue to have a rough time and we're eventually just going to have to tough out the full day though.  We'll see if my instincts are right.

Tuesday, 3 November 2015

The Politics of a "Cure"

When I was speaking at Can-Con last weekend about how autism is portrayed in fiction, I was surprised by the level of antagonism towards any implication of a "cure".  

One of the panelists, who had Aspergers, got quite upset and compared curing autism with trying to cure being gay.  Another said we shouldn't even diagnose autism since the purpose of a diagnosis is to "fix" the problem.

I disagree on both points, though I believe I can understand the underlying motivation behind them.

It would indeed be beneficial if people and society were more understanding and accepting of different ways of seeing the world.  That should be (and is) one of the goals of the autism community, to normalize how people with autism see the world so that it can be accepted as just another point of view.  However, there is a substantial difference between those who are able to function and those who aren't.

To say that those who need help in order to function in society should not be allowed to have it or even be allowed to self-identify is cruel.  It puts politics above individual welfare, saying that the appearance is more important than the reality.

To me, there is a big difference between autism and sexual orientation.  Autism has hard-wired problems such as sensory issues, difficulty functioning socially and communication challenges.  Those things will sharply limit the individual with autism from doing the things they want to do if they don't receive help with how to deal with them.  For sexual orientation, the difficulties are external, imposed by society's expectations.  In a completely accepting society, the person with severe autism will still have difficulty.

And I strongly disagree with the idea that the purpose of a diagnosis is to fix the disorder.  It is also to identify what help and accommodations a person needs and help them to find a supportive community of similar people.  

I've compared autism to a backpack of rocks, weighing my children down and making their life's journey more difficult compared to the rest of the world.  To imply that I am somehow not accepting of my children because I don't want them to be hindered by that backpack is just insulting.  Any parent, any human, should be outraged and want to help.

There are two ways to make that backpack lighter.  One is increased acceptance but the other is therapy and the hard work which comes with it.  I cannot control society's acceptance, although I can certainly try.  But I can certainly put the work in at home.

Perhaps one day my sons will look at me and rage about how I forced them to become typical.  How I pushed them beyond their natural place and view.  If that day comes, it will be hard, but it will also be a secret moment of triumph.  Because it will mean they've come far enough to no longer be weighed down by their autism.  And that would be a success.

Monday, 2 November 2015

Hallowe'en 2015

This year's Hallowe'en costumes turned out particularly well, I believe.

Mr. Nathan was Han Solo.  He already had the turtleneck, I made him the vest (including smuggler pockets) and then tightened a set of sweatpants for his pants.  I added a "cuff" around his knee for Solo's knee-boots and the red stripe.  Nathan really liked his gun belt with the low slung holster.

Alex was Super Grover 2.0 (from Sesame Street).  That one presented more of a problem.  We already had the cape, so that part was simple.  I made the pants and top out of blue towels, then the harness and belt out of craft foam sheets.  The gloves are regular white knit gloves with the Grover fingers (more towel) on top.

The helmet was the hardest part for me to figure out.  I used a Kinder suprise egg wrapped in felt for the nose and craft foam for the eyes and mouth.  I rolled up towelling to do the "chin" for Alex to look out of.  The helmet was all craft foam and while I wasn't entirely happy with it, I think it turned out well.

The two of them had a lot of fun.  We went trick or treating for half an hour, managing to make it up and down most of our street.  Together, they collected a shopping bag full of treats (although I'm sure they won't be eating most of them).  It was a nice change from last year's "two houses and we're done" approach.  Halfway through, Alex decided he didn't want any more chips, so if someone started to give him a bag, he'd tell them "No chips, please."

Dave and Nathan did the decorations since I was away at Can-Con.  It's the first year I haven't wholly coordinated Hallowe'en and while I feel a little sad at not getting to participate in everything, I think I hit all the important things.  I rushed back for trick or treating and took them out.

Dave found these rotating "disco" bulbs for our lights, which turned out to be a big hit in the neighbourhood (although difficult to photograph).  It was real easy to spot our house with all the light and motion.

Friday, 30 October 2015

Screentime Sanity

Screentime privileges are a constant source of tension in our house.  They are the biggest source of tantrums, demands and aggression.  I'm starting to have more sympathy for my parents and their occasional decisions to eliminate television entirely.

Recently, we've got to a limited access model.  Each child gets a predetermined number of 30 minute slots per day.  On a school day, one before school, one after school and one after supper.  On weekends, an additional one in midafternoon.  Our hope was to stop the frequent "I don't want to go anywhere because I'd rather play iPad" tantrums.  Thus far, not entirely successful.

The slots have to be "earned" by doing chores or other activities (like homework).  This is another source of tension, particularly for Nathan.  He often spends his pre-screen time playing and then gets very upset when it arrives and he hasn't "earned" it.  We've tried giving him warnings and prompts but he just doesn't have the impulse control to regulate himself.

Alex earns his by following instructions without complaining.  He's improved a lot here but it's still a challenge.  He gets two warnings before losing it.  We have little cards with Elsa from Frozen on them which say "Remember to listen".  If Elsa covers screentime, no screentime.

Lately we've had an additional challenge.  Nathan is so obsessed about his screentime that he's refusing to leave to visit the bathroom if he needs to.  So we had to revoke his screentime for 3 days to remind him that bathroom takes priority over screentime.

I know the regulations only make screentime more prized, the forbidden fruit.  But it devolves into total chaos if we allow unlimited time.  We get screaming tantrums which can last over an hour because we've dared to interrupt six hours of watching YouTube videos to serve supper.  I really don't see any way around this.  Kids don't have good impulse control (that's why they're kids) and television, iPad and computers are all designed to be powerful lures.  I can't really expect the boys to self-regulate and I'm reluctant to get rid of the screentime entirely when it is a powerful motivator for their behaviour.

I guess it means I just have to resign myself to tantrums and challenges.

Thursday, 29 October 2015

Holland vs Italy

Yesterday, as I was searching for Emily Perl Kingsley's Welcome to Holland essay, I found this reply from a parent who hates the analogy.

Kingsley's essay is about how a parents' expectations have to change when their child is diagnosed with special needs, like going to Holland instead of Italy.  Parents have hoped and prepared for Italy and ended up in Holland, which has its nice points but isn't the same as where everyone else goes.

The counterargument in the reply is that no one's expectations of parenthood ever get fulfilled.  There are always wrenches in the process or tragedies waiting to strike.  But the main source of frustration seems to be that the Holland essay is used as an inspirational piece, a "hey, your life is okay, you're just in Holland instead of Italy".

I can understand that frustration.  Personally, I dislike inspirational stories, especially when relayed by those who don't really have a grasp on what I'm dealing with (Random people in the street, looking at you).  The implication always seems to be "these parents kept trying and managed to fix their kid, why aren't you making that effort?".  It also implies that I should be desperate enough to take the parenting advice of the cashier at Farm Boy.

I recognize that the intent is kind.  They want to share something that they think might help, they want to spread a little sunshine, they're excited to have something to offer.  But in the end, it is all about them and what they want, not about what is actually helpful to families with special needs.

Going back to the Holland analogy, one can certainly argue that reality and expectations are different for everyone and autism isn't the only possible twist in the road.  But I would argue that having a child with special needs is significantly different from a bookish parent discovering their child has an affinity for sports.  This is why I emphasize that we're talking about different countries when I use the analogy.  It's not about different expectations, it's about needing radically different tools and teaching processes.

I intend to keep using the analogy.  I've found it helpful for illustrating the reality of a diagnosis for newly diagnosed families.  As devastating as it can be, it is also the moment when families finally start to get the help they need.  Getting around Autismland (since Holland may be starting to get a complex about this continuing analogy) is possible once you have the right maps and language.  

Wednesday, 28 October 2015

Finding Your Footing

One of the most common questions I get asked is how long does it take until parenting a child with autism makes sense?

With autism, a lot of traditional parenting strategies go out the window.  "Use your words" is no good for a non-verbal or limited communication child, the "time out" can be a reward for a child who prefers not to interact with others and tantrums can sometimes last for days, making "wait it out" a less than effective strategy.

Before a child is diagnosed, most parents are combing through the Internet, books and magazines, desperate for anything which can help them.  Yet somehow, the strategies which are touted as "fool-proof" either don't work or make things worse.  Parents doubt themselves and feel helpless and hopeless.  They don't realize they're reading from the wrong manuals.

Once a parent has the right manuals, things begin to make sense very quickly.  Something as simple as a visual schedule can make a tantrum-inducing routine suddenly flow smoothly.  Knowing that a child cannot tolerate inconsistency allows parents to prepare for special occasions.  Using Picture Exchange Communication can allow a non-verbal child to finally ask for the milk rather than a frustrating game of guess-the-charade.

It's not instant and there is still a disproportionately high amount of work to be done, but it happens more quickly than a parent can imagine when they're in the pre-diagnosis stage.  I usually tell parents that when they look up 6 months from now and compare where they are with where they were, they'll be amazed how far they've come.  Knowing what we're dealing with makes all the difference in the world.

Emily Perl Kingsley wrote an analogy comparing having a child with autism to landing in Holland after boarding a plane to Italy.  It's a good metaphor for the experience.

No one in their right mind would expect anyone to navigate Holland using Italian language books and maps.  It would be frustrating and demoralizing.  The tourist would begin to feel stupid and blame themselves.

But if you give that same tourist a Dutch phrase guide and a map of Amsterdam, they would suddenly begin to be able to move around with confidence.  They would understand they weren't crazy or stupid, they were just looking at the wrong map.

This is why I'm a strong supporter for early diagnosis.  The faster we can get parents the right maps, the easier their lives and their children's lives will be.

Tuesday, 27 October 2015

Alex Eats Bacon

On the surface, this isn't a huge announcement.  Almost everyone loves bacon.

But this is the very first crunchy food which Alex has ever voluntarily eaten.  (He's reluctantly eaten some crackers with the promise of a treat after but it's clear he didn't enjoy it.)  Five years ago, he would only eat pureed food and this weekend, he chowed down on crispy bacon.

We were trying a "Breakfast for Supper" night (just for a change) and I'd made pancakes, bacon and eggs.  I figured Alex would eat the scrambled eggs, since they're soft and familiar.  Pancakes were a 50-50 toss and I thought we'd be making good progress if he tolerated the bacon on his plate.  

I asked Alex to try the bacon and he broke off a tiny piece to put in his mouth.  Then another, without being asked.  Within a few minutes, he'd devoured the entire piece and reached for another one.  He ate three slices before turning to the pancake and eggs.

This is proof that his oral sensitivities have calmed enough to tolerate crunchy food.  We just need to find crunchy food that he likes.  It'll probably never be preferred but more and more, Alex isn't going to need a special menu when we go somewhere.  And that is very liberating.

Monday, 26 October 2015

Finished the Halloween Costumes

Every year I go through the same cycle.  I always got beautifully done handmade costumes when I was a kid (I had to cover them up with a snowsuit ... but that's a separate rant).  I want my children to have the same quality of costumes that I did.

I'm not impressed with the costumes in the stores.  They're flimsy and, other than the princess costumes, badly done.  So that means I make my kids' costumes every year.

And every year we begin with a cool idea.

 Then I start sewing and hot-glue gunning.

Then I start worrying that I won't have enough time to get everything done.

Then I feel like a failure because my skills don't match what I wanted to do.

Then I pull it all together and the kids seem happy with the results.

And I tell myself that next year, I'll make things simpler.  Until next year arrives and I start all over again.