Thursday, 21 December 2017

Reply from the School

Yesterday, we got a reply from Alex's school apologizing for having upset us and letting us know they were calling in the ASD team and behaviour consultant attached to the school board.

This is something of a mixed relief.  On the one hand, this is exactly what those resources is for, so it is boggling that they haven't been involved before now.  Unlike private services, the school board team can go in and observe in class and work directly with the teacher and staff.  On the other hand, they don't know Alex, which makes me a little leery.  They also usually have a lot of cases on the go, so I hope Alex will receive proper attention.  They should have access to the report done by our behaviour consultant which spells out exactly what Alex needs.

The other part which worries me is that I'm now out of the loop.  The team will consult with the school but I likely will not be told that they've even been, much less what their recommendations are.

In the end, the important thing is Alex.  Hopefully the ASD team will be more interested in helping him and making him successful than they will in going the "safe" route of using techniques which we know don't work but look lawsuit-safe on paper.

Wednesday, 20 December 2017

In Which We Learn Nathan Is Intolerant To Movie Theatre Popcorn

(For those who have asked, no response from Alex's school yet.  There is a part of me which regrets having to escalate since I have a great deal of respect for the LST and Alex's actual teachers, and I believe they want the best for him, but I'm still furious about yet another proposal to use a helmet.)

Now on to other news...

Last night, we took Nathan to see The Last Jedi (which was awesome, by the way) and he had a great time.  The last two times we took him to the movies, he's had a large popcorn and then ended up throwing up within 12 hours.

Okay, too much popcorn for one little guy.  So this time, we got him the medium and discreetly tucked it away when he got halfway through.

And we still got an upset stomach overnight.  Which suggests to me that there is something in the popcorn which doesn't agree with him.

The interesting thing (which I had time to think about when I was stripping his bed at 3 am) is that I remember going through a similar phase at his age.  Every time I went to the movies between 10 and 12, I remember getting sick from the popcorn.  (At no time did this stop me from getting the popcorn... which probably reveals something significant about my personality.)  Then one day, it just went away and never came back.  Hopefully it will be the same for Nathan.

Meanwhile, he's earned himself a day at home but one working on his school project since I know he's not really sick.  Maybe that makes me a mean Mommy, but in this case, I'm okay with it.

Friday, 15 December 2017

A Rough Week At School For Alex

After three days of nothing in the communication book, yesterday's note came in to say that Alex has been being aggressive towards the students and staff at school all week.  This is a big enough issue but I also got an email saying that they are concerned about the "health and safety" of the SIBs which happen in the timeout, which is the protocol we have told them to use for the aggression.

Specifically, they are concerned that he has a small cut on his forehead which he is reopening with repeated SIBs, causing him to bleed in class.  He does not tolerate band-aids well, so there is a chance of other people coming in contact with that blood.  (This is a pretty minimal risk as he has no blood-borne diseases, but I can understand the "yuck" factor at play.)

Their response has been to suggest the helmet yet again, despite the repeated times we have told them (and shown them proof) that the helmet will only make things exponentially worse.

This is incredibly frustrating.  Before he went to that school, we hadn't had an incidence of aggression for over a year.  Now it's back to being a daily occurrence but only at school, which means that there is nothing that I can do as a parent to stop it.

Wednesday, 13 December 2017

Balancing the Budget for 2017

2017 was an expensive year for us.  We had to get a new (or at least new to us) car, we had two trips out to Cambridge for dog training, and I had a month on EI due to medical issues.  Add in our increased cleaning budget, and it all tots up to quite a bit.

It means that this year will be a quieter Christmas for us.  We're not getting our usual professional family photo done and gifts are going to be a little smaller this year for everyone except the kids (and I've made more of an effort to stick on budget for them).  

We're going to be okay in terms of the regular bills but there are a bunch of things which are going to have to wait until we're back on more of financial track.  The one thing I'm very grateful for is that right now, I'm not having to pay for intensive therapy for either child.  If we were trying to deal with that on top of everything else, then we'd be looking at serious changes like having to move or one of us getting an extra job.

And that's a bit of a sad reality for a country where the vast majority of our medical expenses are covered in order to avoid just such a situation.  Because people shouldn't have to choose between paying their mortgage and doing what their child needs.  It also highlights a frustration of mine about how autism and other mental health issues are treated.

People in crisis get the funding.  People who don't make the effort to do the work themselves get the funding.  Those who have been responsible and who ask for help, don't.  As I discovered when I went on EI, the fact that I have a regular job history actually counts against me when applying for extra help.

Now, I'm not against giving help to people who are in crisis or who are below the poverty line or who can't afford to do private therapy for their kids.  They all deserve help.  But sometimes those of us who "look" respectable on paper need it, too.  It would be nice if the government or charities recognized that a little help at the right time can keep families from spiraling down and needing a lot of much more expensive help later.

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.


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.