Saturday, 17 February 2018

Wrapping Up

I've had to make a rather difficult decision about whether or not to continue with this blog and I've decided not to keep posting.  A daily blog has become too much of a challenge for me right now.

I will be continuing to post updates about Alex and Lynyrd on their blog but it won't be on a regular basis.

If you are a family with autism who is looking for support (and are in Ontario), you can check out the Ontario Special Needs Toolkit for general help and the Ontario Special Needs Roadmap for help with schools in particular.  Neither of these resources were available when I first began this website and blog but they're filling a vital need in the autism community.

Thank you for following our adventures in the world of autism.  It's been a big change for all of us since I began.

Friday, 19 January 2018

Technical Difficulties

I've been quiet for the last week due to technical difficulties with my computer.  I will be back once I get them sorted.

Friday, 12 January 2018

More Thoughts on Theory of Mind

And the hits keep coming.  My little corner of the autism universe has been blowing up with angry articles by adults with autism complaining about scientific assumptions that they lack theory of mind, which is the ability to understand that other people have different thoughts, experiences and emotions than they do.  Generally, this tends to affect people with autism in the following ways:

- inappropriate reactions (eg laughing when someone is upset)

- problems anticipating others' reactions to their behaviour (eg expecting others to remain calm when they have been throwing a tantrum)

- assuming "universal knowledge" where what they experience, think, and feel is what everyone experiences, thinks, and feels.

- Difficulty with social rituals (eg taking turns in a conversation)

- Difficulty with pretend play (problems understanding character's motivations)

There is a real issue when lack of theory of mind is understood as a lack of empathy.  People with autism do not lack empathy.  They may have trouble picking up on expressive cues, but that is something which can be taught.  And many describe themselves as feeling overwhelmed by other people's emotional reactions, which is certainly not a sign of a lack of empathy.

However, there is a real gap in their perceptions which needs to be addressed (and here's my disclaimer that I'm not a psychologist or other accredited professional, this is based solely on my own experience , research and understanding).  I see these challenges on a regular basis, from both the high and low functioning communities.  Examples such as someone getting angry over something and assuming ill intent on the part of the other person, or failing to understand that their hurtful words have an impact past the immediate moment.

Some people will point out that many neurotypical people can show the same symptoms, and they're right.  There are plenty of people on both sides of the spectrum who lack a fully developed theory of mind, so perhaps the community has a point in that those with autism should not be singled out.  However, it is crucial for parents and educators to understand that those with autism likely will need help.  Most people will develop theory of mind through observation and imitation.  However learning through observation and imitation is one of the areas where people with autism have the most difficulty.  They will need to be taught explicitly, rather than assuming they will "grow out" of it or "just get" it.

There's certainly a valid debate as to whether or not the theory of mind problems are a result rather than a cause.  If a person has trouble with observing and understanding others, is that a result of an assumption of universal knowledge or is the universal knowledge a result of the fact that it's hard for them to understand and observe?  That's a question that professionals should be pursuing.

But for parents, the needs are a lot simpler.  They need to understand that their child's behaviour should not be taken personally, but understood as a different way of perceiving the world.  They need to understand that these skills can and should be taught, and can be developed with practice.  That's it.  

So here are some things that parents can do:

- practice recognizing emotional expressions and body language.  We did this using books and television, pausing stories to identify what the characters were feeling.

- talk about others' experiences.  Again, using books or movies, we practiced understanding what the characters felt (eg, why is Grover sad because Ernie can't play right now?)

- practice social rituals, like "Say 3 things and then ask the other person a question" to avoid monopolizing a conversation.

- praising appropriate reactions, such as apologizing, keeping one's temper, and being considerate.

None of these are particularly difficult or intrusive but they can be helpful.  And I don't feel that they are an attempt to "fix" autism (another common complaint from the community).  I see teaching these skills as a necessity.  My kids may choose not to socially interact when they become adults, and that's fine, but if they do, they will have the skills they need.

Thursday, 11 January 2018

Holiday and Back to School Update

The holidays went surprisingly well.  Alex joined us at a family Christmas Eve event and he did very well in the house despite there being a lot of people.  Not to mention, it's a "grown-up-talking" kind of party, as Nathan says.  Both of them handled the late nights and disrupted sleep well.

Alex's favourite presents are a Pocoyo hat and shirt from his Nana, and a 1000 piece puzzle that is a detailed map of Canada, which was from Santa.  Irritatingly, one of the pieces has been lost and despite extensive furniture moving, we can't find it.  We may have to see if Santa can send another piece.

Nathan got some Dr. Who comics which he's been enjoying, but his favourite part of the holiday seems to be having a new audience to pay attention to him.  

We only had one headbanging incident with Alex over the two weeks.  He'd been building something and it got knocked over and he banged his head in frustration.  Since he's been back at school, he's been doing a lot of headbanging and split his forehead open each day.  It's frustrating, especially because there's very little I can do.  

I decided to keep him home for the snow day today.  Usually, I send both kids to school but I think both Alex and school can use the break from each other.

We've been having trouble with our computers, so posting may be spotty for the next while.  I'll do my best to keep up.  I hope everyone else had a good holiday, too, and is back on track for the start of 2018.

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.