Standing Up For Yourself

Most of the time, we're encouraged to listen to authority, follow the rules and make nice with other people.  These are all good and necessary things in life, but sometimes they need to be thrown out the window.

Yesterday, I was speaking to a parent whose child was recently diagnosed and their situation struck many of the same chords that I went through.

The family doctor who dismissed and denied, making me feel like I was crazy and paranoid for even suspecting something was wrong.

The impenetrable bureaucracy of the school board, with suggestions and preferences phrased as iron-clad dictates.

The utter silence from various groups as to what the heck I was supposed to be doing next. 

The well-meaning but hurtful comments from a select group of others who mainly wanted to know what I'd done wrong so they could congratulate themselves on having avoided it.  Or make themselves feel better by saying that it was all part of a plan.

Hopefully these kinds of reactions will become rarer and rarer as more people understand how prevalent autism is and how to deal with it.  There are already vast improvements since 2006 when we got our first diagnosis.  Now the Ontario government has a resource kit for families to help them navigate their options.  They're working on putting together an overarching agency to help families.  The schools are more aware and better equipped to handle a child with autism.

But there are still occasions where parents need to put down the diplomatic pen and start wielding some red-tape slashing swords.

To put it bluntly, if your family doctor is telling you that your kid will grow out of autism, that there's no need to worry, that lots of kids have autism and do just fine, then you need to kick his/her butt to the curb and find someone else.  There are too many things which rely on a cooperative physician and trust me, you don't have the time to waste.  I used to tell myself that it didn't matter what my doctor thought as long as he got me the referrals I asked for.  But it was emotionally draining to listen to every time I had to speak to him (and there were lots of them).

Some schools are great and some aren't.  It's really a matter of a mixture of personalities and resources.  But sometimes I feel that the board deliberately tries to make things as opaque and difficult as possible for parents.  I don't know if it's an effort to save resources or simply bureaucracy grown to unmanageable proportions but the lack of communication is a definite issue.  The Ontario Special Needs Roadmap is an interactive program developed by parents to help them penetrate the bureaucracy and get what our kids need.

There's still a great deal of conflicting information out there and that's not likely to change.  Everyone has an option about the best way to deal with autism and sadly, it's hard to tell the difference between wishful thinking and evidence-based information.  I think this is why so many organizations are reluctant to comment on various options.  They don't want to dismiss parents' experience and desires but can't endorse programs they don't believe will work.  Because they can't endorse all of them, they end up not being able to say much at all.

Friends and family are a necessary and wonderful support system but in the first few months after diagnosis, it can be a chafing and draining set of interactions.  People like to understand how bad things happen, they like to theorize and tell stories.  It's part of a reassurance mechanism to help us feel like this is an ordered and purposeful universe.  But quite often, that impulse only makes parents feel isolated and frustrated.

My advice to the extended circle is to do research on your own time.  Unless the parent brings it up, save your theory on genetic influence vs vaccinations for other people.  Try to listen instead of fixing the situation.  This is a long-haul issue with many unusual features, so telling people to look on the bright side or take comfort in the fairness of the universe or telling them that this could all be fixed with different parenting decisions is not helpful, no matter how much it makes you feel better to believe it or how much you'd like to take away their pain. 

Parents, be gentle with yourselves.  There is a grieving process as you come to understand that your life has taken an abrupt right turn from where you thought it would be.  That's normal and we all go through it.  The only thing I can say is that it is also temporary.  Sooner than you think, you'll get your feet back under  you and start to understand the layout of your new world. 

Meanwhile, keep your pen and your sword handy.

Stealth Autism

I often call Nathan my "stealth autism" child.  He seems perfectly fine and neurotypical until he hits something which drops him in his tracks.

With Nathan, this often happens around using screentime and transitions.  This weekend, he was due to go out with his Avi.  My dad usually takes one boy out for a few hours on the weekend to spend some time together.

I had to take Nathan with me to run errands in the morning and he'd had a good time, especially when we discovered a bouncy castle and dunk tank in the parking lot.  But it meant he didn't spend his morning playing video games or watching YouTube of people playing video games.  He'd been fine with the idea of going out in the afternoon until it hit him that he wasn't going to get screentime.

Then we got the excuses and tantrums.  He felt sick.  He felt tired.  He wanted to stay with Mommy.  It wasn't fair because Alex was going to get screentime and Nathan wouldn't.  If he went with Avi, he would never be allowed to have screentime again.

Dave doesn't have a lot of patience with Nathan when he starts up like this.  He sees it as an attempt to manipulate him.  I agree that it is not appropriate or helpful behavior, but I think there is genuine fear there which needs to be addressed.  (Daddy thinks I'm a sucker, I think he's too harsh ... feel free to weigh in with your own opinions.)

I'm sure plenty of kids throw tantrums when they don't get a treat they're expecting.  But most kids have an easier time transitioning from one set of expectations to the next, especially once they hit school age.  For Nathan, getting yanked out of one set of expectations raises anxiety that he won't be able to come back (this is my opinion).  We've known this is an issue for awhile, which is why we usually have him finish screentime a good 15 minutes before we expect him to do anything else.  That way he's got the mental time to shift gears.

Recently Nathan's been on a "it's not fair" kick.  He uses it to mean "I'm not getting what I want right now" and my attempts to explain that "fairness" doesn't mean getting what he wants are falling on deaf ears.  I'm trying to be sympathetic and acknowledge his disappointment, but sometimes I wonder if I'm just encouraging bad behavior instead of encouraging Nathan to be aware of his feelings.

Maybe I should just start with the expectation that life is not fair, especially by his definition.

75 Days and Counting (and don't forget Pure Antics at Coco Jarry's on Saturday!)

Today is the last day of school.  After this, the kids have 75 days of freedom (not that I counted or anything) before they have to return.

Usually summer is around 9 weeks, this year it's almost 11, with the early finish in June and late start in September.  But I think the kids will make good use of the time and I just have to remember to take it one day at a time.

This is the most unstructured summer we've had since Alex was 3.  I did that somewhat deliberately, thinking he and Nathan both needed a break from routine, but I can't help but feel nervous about it.  Am I just setting myself up for fights and tantrums from boredom?  Only time will tell.

I also rather foolishly took on a home improvement project.  Clearing out the clutter in Dave's office so that I can use it during the summer.  (Yesterday I was trying to talk to clients while Alex threw a head-banging and screaming tantrum in the next room.  I need the option of a door to close.)

Dave's office has become a catch-all storage for things we don't quite need but don't want to stick down in the basement.  It really needed to be cleared out and sorted through.

I'm looking forward to seeing Pure Antics at Coco Jarry's on Saturday for Alex's benefit concert.  It's going to be fun!

Immunization Call

I just got my call from Ottawa Public Health asking me to confirm that my children have been immunized before the next school year.

This tells me that they are taking immunization quite seriously.

I know that I will never have a chance at convincing anti-vaccinators that the benefits of immunization outweigh the risks, even if they are 100% right in their accusations (which I don't believe they are).  It makes me feel a little sad and defeated, knowing how many people are afraid and are being pushed by that fear.

I wish our public officials and scientists had always been worthy of the trust we put in them.  I wish we still could have absolute faith in scientific results without having to look up a list of corporate sponsors.  I wish people hadn't hidden discoveries or interpretations they found inconvenient to their desired results.

People are absolutely right to be suspicious.  We have been lied to in the name of profit and convenience.  But there is a difference between critical thinking and awareness and simply dismissing anyone in a position of authority.  Credentials do not automatically mean "liar".

I understand the appeal of being able to point to something simple and say "there's the problem".  I understand the need to find something to blame, preferably something preventable and outside the family.  I even understand the blindness which comes from a desire for vengeance on a group or practice which families believe has harmed their children.  It's all a common reaction in human history, one which has led to some of our worst collective decisions: like wars, the witch hunts and genocide.

Instead of hoping that I can change their minds, instead I hope the anti-vaxxers stand up for what they say they believe in.  Admit that you have not had your child vaccinated and accept the consequence of not being able to send them to school.  Don't lie and put every one else at risk.  If you truly believe that what you are doing is right, then stand up and be publicly counted for it.

Last Minute Chaos and Teacher Gifts

This week is likely to be sketchy for posts as I try to cram everything into the four days where I still have state-sponsored childcare (otherwise known as school).  I'm sorry about that but I hope everyone understands.

Yesterday I picked up the end-of-year gifts for the boys' teachers.  This is always a bit of an expensive proposition, because there are 6 of them.  Nathan has his teacher and an EA (whom he shares with 4 other kids but she does a really good job with him) and Alex has his teacher and 3 EAs. 

This year has been a challenge.  Nathan had a tough time transitioning and his teacher and EA showed a lot of patience and encouragement in working with him.  Alex's schedule has been a challenge all on its own, with half days and surprise full days thrown in.  Add to that his own transitional challenges, the fundraising for the dog and a food tolerance program and they've really earned their money with him this year.

There is also the matter of the strike.  I always come down on the side of the teachers.  Not the school board and not the union, but with the teachers.  They get caught in the middle between two organizations that frankly seem more interested in battling for power than in protecting either the children or the on-the-ground staff.  Our teachers have done an incredible job at finding a balance between supporting the strike action but also making sure that the boys are not negatively impacted by it.

In light of all this, I decided to go beyond my usual $5-$10 budget and get them each a $20 gift certificate for a local restaurant.  They deserve a nice night out.  This isn't something I'll be able to do every year, but this year, I'd say they'd earned it.

New Tool from Ministry of Child and Youth Services

The Ministry of Child and Youth Services has put together an Autism Parent Resource Kit.  It shows services available across Ontario.

At first glance, it looks like the kind of comprehensive one-stop site that I've been saying parents need for years.  It lists programs and services, ideas to try at home and resources such as books and websites.

This is another encouraging sign that the government is starting to take autism seriously.  Parents shouldn't be expected to become instant experts on their child's condition and what is available in their community.  Raising a child with autism is time consuming enough without having to add a research degree on top of it.

Update on Fundraising: Thank you South March and Gridway

Yesterday was Gridway's open house and fundraiser for Alex's service dog.  It was very well put together, with a dog trainer and two service dogs in training there to answer questions.  (I got a lot of my questions answered about the care and feeding of the dogs.) 

One of the dogs is due to graduate from the program in April, which means he could be in the graduating class when Alex is up for his dog.

I haven't received the final totals, but I was told the silent auction raised around $ 800 and that Gridway would donate $ 20 for every person who came in, and we had around 40 people, which would be another $ 800.  And there's still the money in the donation boxes to count and several people who took information to do direct online donations.  I'd say it was a great success. 

It means a lot to Dave and I that his work went to this kind of effort to help us out.

I also heard the final totals from South March's bracelet sales: $ 323.70.  That's an impressive amount for a class of 6th graders.  In fact, it beats the totals I have from my two garage sales.

Thank you to both South March and to Gridway Computing.  Sometimes, I feel like I'm very much on my own dealing with Alex, so it's great to discover that I'm not.

The Battle For Screen Time

Like most kids with autism, mine have a tough time transitioning from one task to another, particularly if they're enjoying what they're doing.  This has become a particular challenge for screen time (which includes: iPad, Xbox, TV and computer). 

Alex is less of an issue because he's always had timed screen time through the day.  But I've noticed more tantrums and whining when I tell him that it's time to put it away.  Nathan gets so upset that we need to stop screen time 15 minutes before we expect him to do anything else, which can be a challenge if I get distracted or we're running late.

With summer fast approaching, I've had to do some thinking over how I'm going to manage this.  I don't want them to spend the summer with their nose in a screen, nor do I want to spend it listening to them demand and tantrum over their screen time.

So I've decided on something fairly radical for this house: regular screen-free time.  I've told them that we will not be having screen time until Alex's therapy is done for the day (around 4 pm). 

This puts pressure on me as I need to make sure we have activities planned every morning.  If I expect them to hang around the house amusing themselves without screen time so that I can get things done, it's not going to happen.  They will come to me to demand screens and then tantrum when they don't get it.

In the end, I think it's worth it to try.  And if it works, we may have reduced screen time in the fall as well.

Fun Fair Fundraising Results

Yesterday, the Grade 6 class at Alex's school sold Rainbow Loom bracelets and charms to raise money for Alex's service dog.  They made dozens of items to sell and did a very brisk business.  If they had sold everything, they would have made $400.  As it is, I would be surprised if they made less than $ 300.

I am humbled and awed by the amount of work they put in.  They really threw themselves into raising the funds and they did an amazing job. 

We're very grateful.

Benefit Concert for Alex (and other fun events)

Granted, it's not quite Band-Aid, but there will be a benefit performance at Coco Jarry's Restaurant and Thirsty Parrot Cocktail Bar in Renfrew on Saturday, June 27th from 8 to 11 by Pure Antics.

This was organized by a family friend's daughter, who wanted to help raise money for Alex's service dog.  She and her fellow bandmates went to local restaurant and bar owners and offered to play for free if they would raise money.

I'm really touched by this offer.

Alex's school, South March Public School, is also doing a fund-raising event.  The Grade 6s are selling handcrafted bracelets at their school barbecue on Thursday, June 11th.  (That's tomorrow.)

Dave's work, Gridway Solutions, is having a charity event as well next week.  (Sorry, that one is invitation only.)

The community support has been amazing.  I can't thank everyone enough.

Therapeutic Riding Set Up

We got the call in about when we'll be doing therapeutic riding for the boys.  Instead of a morning, we'll be trying an evening this time.  On the one hand, that should be good in that I don't have to disrupt camp or other activities to take them to their riding.  On the other, I do worry that they'll be worn out after the day and we'll be more likely to have tantrums and non-compliance.

They do like the riding.  Nathan remembers his horse from last year: My Boy.  From what I've seen, most of the children who are riding are using it for physical therapy, but there are a number of articles claiming benefits for children with autism who don't have physical disabilities.  Animals are straightforward and consistent in their emotional responses, making them easier to relate to.

For my boys, I see this mostly as an exercise in compliance and communication.  They are given tasks and must comply to earn their rewards.  Admittedly, the horse becomes somewhat optional at that point, but they enjoy it and it gets them outside.  I always enjoyed horseback riding as a child and the cost is reasonable for a summer of lessons.  It's something fun they can look forward to each year.

Sensors to Warn of Meltdowns in Development

Students at UBC are trying to develop an unobtrusive wearable set of sensors which would warn parents when their autistic children are approaching meltdown levels.  It's based on the technology which measures heart rates and hydration levels for athletes through sensors in their t-shirts.

I'm encouraged that autism is in enough people's minds to make research projects like this a reality.  The students are actively trying to think of ways to make parents' lives easier.  A way to check a graph or a display to see if a child is close to breakdown or can handle "one more thing".

I'll admit I'm of two minds about this particular project.  I assume that once they have a working prototype for sensors that they will do testing to see whether or not it can accurately predict a tantrum or meltdown before a parent can see visible signs.  (I usually can gauge how Alex is doing by how much and how rapidly he's fidgeting.  As the amount and pacing go up, the more agitated he is and the closer we are to a tipping point.)  I'm having visions of a bar like the "download" bar which jumps and skips (You have 5 minutes to tantrum, 1 minute to tantrum, 2 minutes 30 seconds to tantrum, 15 seconds to tantrum).

On the other hand, this could also be a great self-regulating device for people with autism.  Most people have a hard time judging perspective when they're agitated.  An early warning that a person is tipping over into an emotional meltdown could be an excellent reminder to practice calming strategies.  (And now I'm picturing Bruce Banner/Hulk's wristwatch which warned him if his heartrate was getting close to the magic 200 beats per minute when he would transform.)

Even if this ends up being no more than a gadget daydream, it's a start.  It's thinking about the problem and trying to come up with solutions.  And the more people we have doing that, the more tools will end up  in parents' hands. 

Surprise! PD Day.

Earlier this week, Nathan told me Friday was a PD Day.  I thought he was joking ... until I looked at the calendar and realized he was right.

So today we have an unexpected test run of the summer work-life balance.  Both kids will be home while I'm trying to work and Alex's therapist will come in the afternoon.

Added to the challenge (because I'm an overachiever), is the fact that Nathan was up from 3 to 4 last night (I got to stay up until 5 since it takes me a long time to get back to sleep) and then back up for good at 6.  So we are all tired.

Which means today's test run might involve seeing what's on TV and flaking out from there.

The Dreaded Summer Gap

Kids with autism like routine.  We all know it.  Which means the end of the school year can be particularly difficult.

Summer lasts about 9 weeks between school end and beginning, which is just enough time for Alex and Nathan to feel as if they're settling into a routine before it all switches again.

That said, we are doing some things to help for the summer and next year.

Nathan is showing some anxiety about next year.  I met with his teacher yesterday and got the great news that she is going to be his teacher again next year.  Nathan works well with her and she's got a good idea of what he can do, which is great.  She's going to take him to the new classroom and show him around before the end of school this year. 

We also got Nathan's "homework" for the summer.  He's on an IEP for writing, due to his difficulties with composition, so we'll be working on that.  Nathan's teacher has been having them do a weekly journal entry, so we'll continue that and she's said she's happy to look at it when he goes back.

Alex will be returning to his same school and classroom as this year, so he only needs minimal support.  His therapy will be continuing through the summer, which will give him a break but still keep the routine.

We'll be doing therapeutic riding again this year, a hour per week.  The kids enjoy it and look forward to it each year.

I've got an aide coming in to do two mornings a week of childcare for me.  That should help me to be able to continue writing.

For me, summer is a challenge because while I know I have to keep up a routine, I also know the kids need a break.  They work incredibly hard all year (particularly Alex this year) and need some downtime or else they burn out.  It doesn't matter if the events are fun, they still need breaks.

Don't Push the Buttons on the Microwave (A Review)

A friend picked up this delightful little book for me, a story about a little girl with autism who becomes obsessed with pushing the buttons on the microwave.  She doesn't want to go to school or do anything else for fear that someone will use the microwave without her.

The family decides to temporarily get rid of their microwave to help her to overcome her obsession.  They encourage her to focus on other things instead.

Any family with autism will recognize the challenges of dealing with obsession.  Something which can seem so trivial can end up becoming a hugely inconvenient rigidity. 

I think this book would also be helpful for siblings and classmates to understand how and why their friends with autism become obsessed with certain things.  It's not that they can't share or don't care about other people's feelings, it's something much bigger that isn't entirely under their control.  I think it would be a good starting point to open up a discussion.

Fundraising for Alex's Service Dog (Update)

We're not expert fundraisers.  Putting together a big gala or event is really beyond us.  But I've been impressed by how generous and helpful our family, friends and coworkers have been.

Right now, Alex's total is sitting at $ 8 515, which is almost a third of the way to our total goal. 

Dave and I ran a garage sale on the weekend and also asked for donations for our birthdays.  Between that, another garage sale a few weeks earlier and donation boxes at my work, we've raised $ 225 and some change, which will be added to the total.

There's still stuff upcoming, too.  The grade 6s at Alex's school are doing a fundraiser.  Dave's work is doing a fundraiser as part of an open house.  The daughter of one of our friends (who is in a band) is arranging for charity performances at local cafes and bars.  (I'll have more details on that soon, but one of the bars has offered to do free pizza at midnight!)

I want to say thank you to everyone who has donated so far and thank you to everyone who has helped to spread the word.  I'll admit that when I first saw the total of $ 30 000, I thought to myself that there's no way I can make this happen.  Now, it feels like it's in reach, which makes me feel good.  Either way, Alex will get a dog but now we'll be able to help someone else get a dog, too.

Aspergers and Rudeness

We've all seen the trope on TV and movies.  Someone is being a jerk and then the joke is made about it actually being Aspergers.  I often take exception to those jokes because often the particular type of rudeness being displayed would require a high level of social awareness to begin with.  Rudeness is not the same as having Aspergers.

However, I can see how the correlation might have begun.  People with Aspergers tend to be very detail oriented and don't waste a lot of time on social pleasantries.  In my work, I deal with a lot of adolescents and adults/parents who fall on the autism spectrum.  Since I have experience dealing with individuals with autism, I know not to take the abruptness personally, but even I get taken aback sometimes.

I got a call last week from someone who wanted an appointment with one of our clinicians and began telling me who they wanted to see and what times would be good for them as soon as I'd gotten half a syllable of 'hello' out.  I'll be honest, it was off-putting.  But then I thought about it.  This person likely spent a lot of time thinking about what they wanted and putting together a script they could use comfortably.  They were probably experiencing a great deal of anxiety about the whole thing, which caused them to rush.

Another time, I was dealing with someone who had been referred to us by their family doctor.  The doctor had given them the wrong name and the person was getting increasingly more upset as I tried to explain that the particular clinician they were asking for no longer worked at our office but we had other people who could help.  It took a good twenty minutes before this person could move past the fact that I could not book an appointment with the doctor they'd been told to ask for.  In the end, I gave them the number for that person's new practice and hoped everything would go smoothly after that, since I doubt they would have been able to handle another setback.

We've all seen the news stories about public explosions directed at people with autism.  I don't believe they are excusable but I can understand how a situation such as that might develop, particularly if the exploding person doesn't have much experience with autism.  It is frustrating to have someone insisting that you are wrong because what you are telling them doesn't match what they expected.  Or to have someone talking over you while you are trying to explain something to them.  Social niceties may be useless information, but they are conversational lubricant.  Without them, the exchange of information can come across as hostile.

I've been merciless in drilling our boys to be polite and they're very good with their pleases and thank yous.  But there's more to politeness and acceptable interactions than please and thank you.  I hope there are lots of tolerant people with understanding and grace to catch them when they slip.