Monday, 11 December 2017

The Controversy Over "To Siri With Love" - My Thoughts

It's taken me awhile to feel emotionally ready to tackle this subject which has been blowing up the autism corners of the Internet over the last week.  To start, a mom wrote a book about her autistic son called "To Siri With Love" which has been getting good reviews.  Then adults with autism began to call for the book to be boycotted, saying it was hurtful to the autism community.  The author has responded and the angry words have been flying hard and with considerable venom.  I'll recuse myself right away that I haven't read the book and have no intention of reading the book.  This is purely about my reaction to the Internet frenzy about the book.

And that frenzy has been really bothering me.  I generally support the right of marginalized people to share their own stories and recognize that portrayals of autism in media are often inaccurate and promote more stereotypes than useful information.  However, despite not being a direct target, I feel personally attacked by the #BoycottSiri and #ActualAutistic threads for several reasons.

1) The higher-functioning autism community have a tendency to ignore the lower functioning people or pretend they don't exist.  This feels like another example of that with lots of posts about how "autistics" don't do X, Y, Z.  Except that in the lower-functioning ranks, they do.

2) This book is a memoir, talking about the author's experience as a parent.  Many of the attacks are focused on her parenting choices and fall along the lines of "how dare a mother say that it's hard to parent a child with autism."  Society still judges harshly when a mother says anything except how blissfully fulfilled she is about her children and I find that is even more stringent when the child has special needs.  The attacks are silencing on parents, who frankly need to have the right to talk to each other and the world just as much as their autistic offspring.

3) The debate is being framed as "if you're not with us, you're against us" with no room for nuance or actual conversation.  If you don't wholly agree, then you are a horrible person who hates autistics and deserve to have horrible things happen to you.  The level of personal attack is quite high and completely uncalled for.

I'm sure plenty of people will already be angry over what I've just written but I'd also like to break down some of the more common critiques, to illustrate my points.

The rants mostly seem to be being led by one blogger (whose post is linked above) who asked for a review copy and then describes herself as being so angry that she vomited.  Particularly about the following points:

- the mom describes her child's speech as incomprehensible
- the mom describes toilet training as difficult
- the mom says her child has difficulty with empathy and theory of mind

According to the blogger, all three of these things are myths which never happen to autistic people (that's another big complaint of the blogger by the way, that the mom refers to her "child with autism" instead of her "autistic child" which the blogger finds personally insulting.)  Going back to the actual list of complaints, plenty of children with autism have incomprehensible speech when they first get started, have extra trouble with toilet training and have difficulty both in reading and predicting other people's emotions and in recognizing that other people may have different reactions and emotions than themselves.  The latter two points are even supported by the blogger at the same time that she lambasts the author for having dared to say it.

Then there's the attacks on the author's parenting, for having shared anecdotes about toilet training, her child's fears, and even some of the mean descriptors her child has faced.  These complaints have nothing to do with the autism community and could be applied to any parent who blogs, tweets or Facebooks about their child.  The blogger may well feel that it is inappropriate under any circumstances but to frame the sharing as particularly damaging to those with autism strikes me as a weak argument.  

And then there are the attacks on the mother's fears for her child's future.  She talks about concerns about him being able to have a relationship, worries that he may be taken advantage of, might get someone pregnant, and mentions seeking medical power of attorney so that she can deal with doctors and possibly arrange for a vasectomy to avoid further complications.  As much as I can appreciate those who are high-functioning feeling threatened by such statements, these are real concerns when dealing with someone who is lower-functioning.  So yes, it may be possible for him not to have a "real" relationship and still get a girl pregnant.  And the mother would be irresponsible if she wasn't thinking about such possibilities and how to deal with them.  

There are many more points I could use to illustrate.  And maybe the book is just as offensive as they claim.  I can't say, having not read it.  But I can say that every single example being cited falls under the same categories: pretending lower-functioning people with autism don't exist and assuming that everyone with autism has the same abilities and desires as higher-functioning autistics; and attacks on parents, getting angry at them for expressing hardship, doubts and fears.  And I've been doing a lot of searching, hoping to find a smoking gun of offense that would justify the anger so that I wouldn't have to feel attacked.

This isn't an #OwnVoices matter.  The voices of those with autism are not being suppressed or supplanted.  This is the voice of a parent, which is an #OwnVoice.  And yes, she's not claiming that it's all sunshine and roses and "autism is the best thing that ever happened to our family" to make for an inspirational story.  She's talking about the hard things that polite society likes to pretend don't happen.

If this backlash had been framed as "that may be her experience, but this is ours" or presenting anecdotes from those who identify with her son in order to illustrate the many different ways people experience autism, I would be promoting those stories whole-heartedly.  But that's not it.  What I'm hearing is anger and "sit down and shut up" directed at parents.  I'm hearing "How dare you be human?  How dare you have an opinion?  How dare you try and share your own experience?" and that's not okay.

Parents of children with autism already get a lot of crap from the general public, the government, the schools, and any number of other places.  It looks like we can also expect it from adults with autism as well, for not doing enough and for doing too much.  For not being omniscent, perfect beings.  (And now I'm overstating and simplifying, but that's how this feels right now.)

Thursday, 7 December 2017

Heads Up On Why January 1st Could Get Expensive For Families

Like most of us, I was pleased when the Ontario government announced that it will start covering prescription medication costs for children under 25 as of January 1 2018.  It would have been even cooler if autism treatment had been included, but this is still a great step.

Then I got a notice from my insurance company that they would no longer be covering Alex's medication after December 31st.

Okay, that seemed fair, although writing a letter to tell me that seemed a little cheap and mean.

Then I read the second paragraph, which explained that his medication would not be covered under the OHIP+ program either and that I should contact his doctor.

WTF?

Not cool, but at least I was given some warning about it.  I contacted our doctor and was told that "Oh yeah, it's definitely covered... well, maybe it will be... you should check with the pharmacist."

So I checked with the pharmacist and found out that the type of medication is covered but the format (liquid instead of pills) is not.  Good news, there's a form that we can complete for an exception (the EAP - Exceptional Access Program).  Bad news: these forms regularly take 8-10 weeks to process and with the surge of applications expected for OHIP+, it could be more like 4-6 months.

Which means there is going to be a gap between lapsed insurance coverage and OHIP+ coverage, a gap that could get very expensive since the medication is about $200 for a 3 week supply.  The next refill would be about two weeks into January, so I'm going to see if I can get it done early, but we've had issues before where insurance refused to cover the costs because we're refilling earlier than they expected.

I'm more than a little annoyed that I was given less than a month's warning to deal with this situation.  Even more annoyed that this seems like bureaucratic bullsh*t, since he a) has a prescription for that medication in that form and b) has been on the medication for awhile, so it's not like we're trying to game the system.

My advice to parents (both special needs and otherwise) is that if your child is on a prescription medication, check with your pharmacist to see if its covered under OHIP+ so that you don't get an unpleasant and expensive surprise in 2018.

Wednesday, 6 December 2017

Passed the Public Access Test

Dave, my dad and myself all passed the Public Access Test with Lynyrd, meaning that we are now officially service dog handlers for him, with all the rights and responsibilities thereof.

I'm never entirely comfortable with examinations.  Even if I've done something perfectly a dozen times over, I'm always worried that the one time it counts, I'll make a mistake.

Lynyrd did very well with the food refusal and distraction parts of the test, which were the two parts I was worried about.  (Both are an automatic fail of the entire test, with no second chance.)

The second bit of good news was that the person from NSD said that Alex and Lynyrd were bonding really well and working together as a team really well.  So we may not be too far behind where we would have been if Icon had stayed with us.

Now that the test is completed, it's time to work on getting the two of them ready to go to school.

Tuesday, 5 December 2017

Getting Ready For The Holidays

This weekend, I began the process of decorating our house for Christmas.  It's a fairly large job and one that gives me pause each year.  Is it really worth it to go to all this effort for a few weeks only to have to pack it all away again?  (Especially since I know I will do the bulk of the work by myself.)

Each year, I do it anyway so that my kids can have a special holiday.

How much do they notice?  It's hard to tell.  Kids take stuff for granted and mine are no exception.  I would only really find out how much it means if I didn't do it, and for now, that's not something I'm willing to try.

So for the next week, I'm going to be hanging lights, draping garlands, cursing timers, rescuing ornaments from the cat, and stringing snowflakes for the world to see.  And by world, I mean two special pairs of eyes.

Thursday, 30 November 2017

Leftover Enhancement Tactics

As a result of last week's IEP meeting, we're now sending leftovers in Alex's lunch again, in the hopes that if he's not as hungry, then his behaviour will be less of a problem.

We stopped sending leftovers last year, because we were told that the EA who supervised lunch didn't have time to make sure that Alex actually ate the food.  We kept getting them back, uneaten, and it began to affect his ability to eat his dinner.

They've said they will encourage him to eat this time, using the same low-key techniques that we do.  First the leftovers, then preferred food, and using a reward for finishing all of his food.  

And if they don't, I have a backup.  When Alex gets home, I'm checking his lunch box and if the leftovers are still there, I supervise him eating them before he gets screen time.  I'm not sure if this will translate to him eating them at school, but it's the only tactic I have access to right now.

Wednesday, 29 November 2017

Public Access Test Next Week

We just got word that NSD is coming next week to do our Public Access Test with Lynyrd.  Usually, this happens a few weeks after training but I guess it's been hard to set up a trip to come to Ottawa.  Last time there were multiple families from Ottawa at the training, so I think it was easier to do.

I'm pretty nervous about it.  Lynyrd does very well with commands but I worry that I haven't spent enough time working on the various aspects of the test.  Also, since I didn't do the official practice test, I think that has also affected my confidence.

There are two areas I know will be tense:

- the food drop/refusal (Lynyrd is quick and while he doesn't lunge at food, he's still a dog)
- ignoring toys, especially if in motion 

We're going through a higher toy budget than food budget for him, since he goes after Alex's toys if he doesn't have a toy of his own to play with but he destroys them, sometimes in minutes, but rarely lasting more than a few days.  This was not one of the expenses I'd budgeted for in planning for the dog.

In the end, I remind myself that NSD wants us to succeed and this isn't a nasty attempt to "catch" us in a minor technicality.  They want Lynyrd and our family to do well.

Monday, 27 November 2017

IEP Meeting

Last week, we had the review meeting to go over Alex's IEP and I have mixed feelings about it.

On the one hand, the staff were open and honest, asking good questions.  While I was there, I really felt like we had a partnership.  But I'm still sensing an underlying discomfort with the whole process.  And I still feel there's a bit of a disconnect about how certain actions can encourage difficult behaviour.

To illustrate, last Wednesday, Alex and his class were going to a movie.  I'd sent a message to the school explaining how we make movies with Alex work: frequent edible rewards and careful control of the elevator being two key points.  At the IEP, the teacher shared that they instead gave Alex regular breaks to leave the theatre (every 10 minutes or so).  He had a bolting incident and lost access to the elevator.

Their system worked, so I can't really argue, and it's naive of me to expect them to do things exactly as I would have.  But one of the reasons that we don't use breaks is that it isn't particularly socially acceptable to be constantly getting up and down from your seat while at the movies.  Alex is capable of sitting still, particularly if he's allowed to fidget.  And going in and out of the theatre increases the chance that he's going to bolt for the elevator.

None of these things are exactly catastrophic and maybe I'm the one who has too severe an expectation for Alex.  Maybe movies would be more enjoyable for him if we did it the way the school did.  But I can't help but feel that using those kinds of breaks isn't really compatible with the point of going to the movies.

It just leaves me feeling on edge, wondering if I'm missing something or if they're missing something or if we've both missed something.

We'll see if the new IEP is any more reflective of what Alex needs.  And what his behaviour does.