Tuesday, 17 October 2017

Talking about The Good Doctor at Can-Con

Last weekend was Can-Con, the Canadian Conference for Speculative Fiction, and I overheard an interesting conversation about the new TV series, The Good DoctorThe series is by the same team that created House and the show looks at a young doctor with autism and savant syndrome becoming a surgical resident.

Personally, I had mixed feelings about this show to begin.  Autism is trendy right now, and this looked like one more jump on the bandwagon attempt.  But then I found out it was produced by David Shore, who has been respectful about autism issues in the past and has expressed interest in exploring the challenges that people with autism face.  So I decided to give it a try and while I'm still not one hundred percent sold, it's held my attention and respect enough to continue giving it a chance.

So I was surprised when I overheard a conversation talking about how offended some people were that the opening episode had the surgical head telling the doctor with autism that he didn't belong on the surgical team and how the board of directors was upset at the idea of hiring someone with autism.  The people I was listening to were offended that the characters were treating this doctor with prejudice.

And yet, that's actually one of the reasons that I respect the show.  Because that prejudice is there and people with autism experience it every day.  Even those who are much higher functioning than the character, whose autism is "invisible" in most situations will find themselves getting passed over for jobs, promotions and relationships because of an assumption that they would be unable to handle the social aspects of the job.  Even better, in the show, the main character's displays of superlative competence are not enough to overcome his social awkwardness in the eyes of his colleagues, certainly not by the end of the first few episodes.

Now, one of my frustrations is that the character who is expressing the most prejudice (the head of surgery) is not getting called on it.  He has been very offended when someone accuses him of being prejudiced and the people accusing him have backed off.  I am hoping that at some point, someone is going to tell him that deciding in advance that someone is unable to handle a job despite having met all of the listed qualifications is actually a definitive example of prejudice.  Because that's going to bring some real awareness if the writers and producers have the guts to go there.

Thus far, the actor playing the title character is doing a good job of balancing the social awkwardness without going into "jerk" shorthand.  I certainly find him a much better representation than Sheldon on The Big Bang Theory.   I also like that the show's description separates "autism" from "savant syndrome" as the two are very separate conditions.  Too often, they get lumped together.

There are still a lot of pitfalls for this show to avoid and only time will tell if they can be successful at that and at telling interesting stories.  But for now, I'm cautiously optimistic.

Friday, 13 October 2017

Family at the Autumn Evening for Autism

Last night, Dave and I were attending the Autumn Evening for Autism, one of Quickstart's big annual fundraisers.  From what we saw, it was a great success.

But during the speeches, something struck me.  Senator Bob Munson was talking about a mom who had to outrun her 14 year old child with autism and call the police to keep the child from hurting her.  He said "She shouldn't have had to call the police, she should have been able to call on all of us."  As a family.

I think I know what he meant, that the autism community needs to stick together and parents need to share information, etc.  But with all due respect to the Senator, that entirely misses the point.

Parents of children with autism shouldn't have to trade tips and secrets.  They shouldn't have to rely on other parents and family supports to deal with their children.  The government should be supporting families, providing care, treatment and support, just as they would for any other developmental condition or serious illness.  Families should be able to access the information and support they need through the healthcare system, from trained and specialized professionals.

In an ideal world, society at large would be able to forget autism.  Getting a diagnosis would be like getting a diagnosis of cancer.  Not good but it's taken care of.  The child would be assessed and treated without the parents having to research, plan and pay for it all.  If the government took care of the child, then society, specifically friends and family, could help to support the parents and siblings, and then everyone would be better off and less burned-out.

So while I appreciate the sentiment and intention behind Munson's words, as a parent, I demand that the government stop relying on families to sacrifice themselves to support their children with autism.  The fact that we love our children and will do anything to help them to succeed should not be used as an excuse to not help us.  Stop treating autism like welfare, only temporarily helping the worst of the crisis cases and penalizing those who are trying to help themselves.

I've heard a lot of speeches about how things are going to change and how politicians want to help us.  I've seen spectacular amounts of money pledged.  And very little has actually changed.  Piecemeal programs, underfunded programs, huge waiting lists and a support system that seems to be unaware of what supports are actually available.  Not to mention my personal pet peeve, the income caps on programs that continually tell my family that we are "too rich" to deserve help.

I am very grateful for all the support the autism community has given me and I am more than happy to pass it along to others.  But we should never forget that this level of support is necessary because the government is not doing its job to help our children.  This is a stop-gap measure of desperation, not the preferable solution.

Thursday, 12 October 2017

And Now I Know The Rest Of The Story

I spoke with Alex's teacher yesterday and he did have a difficult day on Tuesday but Wednesday went much better.  They feel that the "ignoring" method is working for the head-banging and Alex hasn't been targeting windows again, so that's a relief.

I'm glad that he's doing well but it was an anxious twenty-four hours while I was in limbo.  I've let them know that I prefer a call or a text to an email if they want to talk.  Hopefully the communication continues to improve.

Tonight is Quickstart's Autumn Evening for Autism and then tomorrow The Canadian Conference for Speculative Fiction (Can-Con) starts.  Which means I have a lot of work to do.

Wednesday, 11 October 2017

Something Happened

Yesterday, Alex came home with a blank communication book and a band-aid on his forehead.  Under the band-aid was a small scab on top of the bruised lump which has been present since the second week of September (from head-banging).

Yesterday evening, I found a note from his teacher in my email asking me to call before 3:30 to discuss his day.  I don't check that email account except in the mornings or evenings, so I didn't get the message until way after the deadline.

So clearly, something happened yesterday which has worried staff at the school.  What it is, I don't know, which ramps up the anxiety.  Did he hurt someone?  Did he frighten them?  Did he get away from staff and leave school property?  Are we in for another round of having to discuss the head-banging?  Has the behaviour plan been followed?  

Too many unknowns to create anything resembling a plan at this point.  And since planning is my comfort zone, that means I'm currently out of it.  I'm also feeling pretty discouraged.  He was doing so well 18 months ago.  And I really don't think this is something endemic or puberty-driven.

But, I can't dwell on it too much.  Hopefully his teacher will contact me and I can get to the bottom of this before the end of the day.

Tuesday, 10 October 2017

More Illness and Anxiety

There was a time when my body just worked.  Not always well and I certainly wasn't going to win any awards for healthiest lifestyle, but I could count on myself.  Now, ever since the surgery last spring, when I get sick, I get sick hard and it takes me longer to recover.  In fact, I don't think I've felt completely well for over a year now.  Which sucks.

I got hit hard by the fall cold (which is already a hard hitter).  Nathan was the first one to get it in our house and nearly two months later, he's still coughing.  Then it hit me and it is here to stay.

All of this has meant that I'm not keeping up with all of the things I have to do.  I had to take two days off work last week and I've spent a ridiculous amount of time sleeping or too exhausted to do more than watch TV.  (Which means I was too exhausted to read, and anyone who knows me knows that is a big deal.)

It's been especially difficult since I've been having to keep a close eye on what's going on in both schools.  Nathan's class has been moved to a portable, which has been a source of anxiety for him.  And Alex is still having trouble with aggression and head-banging.  I'm especially worried about the aggression, since that was another thing which had disappeared at home.  I'm really hoping it doesn't make its way back.

IEPs (Individual Education Programs) should be coming out soon.  Nathan was on a non-modified program, so his IEP is mostly about what help he's allowed to ask for.  Alex's will be different.  His is going to need a lot more detail and should look very different from what we had last year.  It's the next big step in making sure that this year goes better than last year.

Wednesday, 4 October 2017

Explaining The World to My Kids

The last few years have held a lot of horrible events like mass shootings, people driving cars into crowds, public calls to violence, and insults/attacks aimed at those protesting the political.

So the question for me has been: how much of this do I explain to my boys?  For Alex, I'm not sure how much he hears and understands, but he certainly repeats what he's heard, so I need to help him to understand that some slogans, no matter how catchy, are not appropriate.  For Nathan, I'm walking a delicate balance between informing him to give him a chance to ask questions and making him worry about events which are out of his control.

It's been a tough set of decisions.  At first, I thought I would just leave them out of it aside from a brief commentary: X happened, so you may hear people talking about it, but you don't need to worry because the police caught the bad guys.

Then I found Nathan playing an online video game which consisted of defending Trump tower from Hillaries (yes, characters who looked like Hillary Clinton) with big blaring warnings of a Liberal Attack Wave and Social Justice Warrior Attack.  That's when I knew I had my work cut out for me.

I didn't ban the game (because I don't want it to become a forbidden treat) but I talked about how Hillary Clinton was a real person and how it must hurt her feelings to see games like this where people are encouraged to attack her.  We talked about Donald Trump and I told him that I thought Trump was acting like a big bully, using his power and position to attack people who disagreed with him.  I explained that Social Justice Warrior was a mean expression, used to attack people who stood up for those who have been hurt by our system.

Since then, I've had to have conversations about whether or not it's okay to punch Nazis (for the record, my opinion is that I have no problem with using violence to defend myself or others, but I am cautious about how seductive it can be to give oneself permission to attack a group.  Violence is easy, immediate and emotionally satisfying but it does not bring about real change), the difference between crazy people and those who use weapons (cars or guns) to attack innocent people (the mentally ill need help and support and those who attack others are cowards looking to make themselves feel important), and why words are important (how the same event can seem entirely different depending on the words chosen to describe it).  

It's a lot and I'm not sure how much is going right over their heads.  After all, appropriate responses to the world are something that most adults spend a lot of time trying to figure out.  But mainly, I want them to learn that the people doing the talking are not always to be trusted, that they have their own agendas.  I want to teach them to be skeptical and insist on research (including source checking).  But I also want to emphasize that for every horrible person, there are a dozen who are trying to make the world better.  People who help the wounded, defend others, and stand up to offer both compassion and insight.

Tuesday, 3 October 2017

Back Home and Settling In

We've finished our first weekend with Lynyrd and thus far, things have gone pretty well.

We're getting some "Lynyrd back to Cambridge" from Alex, but he also seems happy to pet and play with his new dog.  We're keeping things very low key to start, letting it be a positive experience for both of them.

I have to admit that I'm feeling very overwhelmed and on my own about the whole thing.  I'm the one who has to do the daily training upkeep, work on giving Alex and Lynyrd positive opportunities together, and deal with food, grooming and vet appointments.  Not to mention fielding questions from the school and other issues.

I have an appointment with my doctor this week and I think I'm going to have to put my foot down about the medications.  There are at least two which are not helping at all and which seem to be draining my energy further.  It's not worth any more experimentation.

I really need my body and brain to start functioning the way they used to again.  Too much stuff gets missed when I'm exhausted and foggy all the time.  I get sick and it takes me forever to recover.  

I guess what I really need is a vacation where I don't come back to an overwhelming pile of work, but that's not going to happen any time soon.  As long as I'm the one handling the vast majority of what needs to happen here at home, I'm always going to be "irreplaceable" in the worst possible sense.