Monday, December 27, 2010

Sick, sick, sick...

It's been a long two weeks.  Both Mom and Alanna got gastroenteritis, then we've had something like the flu the last week.  Sickness and autism do not mix well.  When my son was sick, he enjoyed cuddles and I felt I could "do" something to help him feel better, even though I really couldn't.  But Alanna, with her limited expressive communication, couldn't express her discomfort in any meaningful way.  We have not taught her to say "I don't feel well" using PECS, sign, or any vocalization yet, so the alternative is the old standby - crying, howling, and being generally miserable.  I tried to comfort her, and although she is generally quite affectionate (a fact for which I am most grateful), she would have none of it while she was sick.  I suppose I cannot fault her much for it seeing as when I was sick I would be happy to just be left alone (that could also be just wanting a break from the kids though too!)

While I am a biomedical skeptic, I can definitely understand the premise that kids with autism who feel physically ill are going to have behaviours and not gain skills to their potential.

Saturday, December 11, 2010


One of the things that has really struck me since Alanna's diagnosis with autism is how it has personally impacted my world view.  A person in a wheelchair, a person with an obvious intellectual disability or other condition would have probably gone unnoticed by me in days past.  I might have been polite, even moderately helpful, but probably noticeably uncomfortable and any help or social contact given would have been primarily motivated by wanting to disengage as quickly as possible.  Let's face it - people are in general not comfortable around those with disabilities.  They do not know what to say to such an individual, or they may be simply afraid of them.  Children intuitively sense this from their parents and learn this response unintentionally.

When I was in university I had the opportunity to do a bit of street mission.  What struck me most in that short time was that most of all, the homeless people on the streets wanted to be acknowledged as human.  They wanted to be able to share their stories and not be treated as if they didn't exist.  I have to admit, after that experience, I tried, when I could, to not treat a beggar like a slot machine for my guilt, but rather, to try to treat them like a person and understand their stories too.

This is the same reality for those with disabilities.  It is easier to pretend they do not exist, like the homeless (or criminals, or other undesirables) than it is to engage them as just another person.  

A wise person once told me that he knew within a few moments of meeting a person whether or not they would be generous with their time or money because of a true generous spirit rather than guilt.  He said, A man who believes he is where he is because of his own actions believes he deserves his fortune.  But a man who knows he has his fortune because he was chosen to have it will be more willing to give it up for the service of others.

So, I challenge you dear reader - the next time you see a person with a disability, engage them, get to know them.  If you don't know what to say or what to do, say so.  It may seem uncomfortable to you, but realize that the person you are addressing probably already knows this and has answered many such questions before.

How do I play with Alanna?  She is not responding to me.
Why doesn't Alanna talk?
You're in a wheelchair - do you want me to kneel when I speak to you?
You're struggling walking, should I be helping you?
I know it's hard for you to hear, does it help to speak more slowly?

Having a child with autism has made me a much more compassionate person.  I am starting to see others as God's children, people to be loved and celebrated, and that although people have and always will make poor choices, many people are where they are because of circumstances too.

Before you think I am going to sprout "autism is a gift" nonsense, let me be frank - it's not.  It sucks and I hate it.  If I could do anything to make Alanna's autism go away tomorrow I would do it in a heartbeat.  I simply wanted to point out that in our life circumstances, we can choose how to react - to learn and grow, or to be a victim.  I am thankful I can understand others better - even if, given a choice, I would have preferred to never have had such an understanding.  Perhaps that makes me a terrible person.  I just think it makes me human.  Like Alanna.  Like all of us - with or without disabilities.

Thursday, December 2, 2010

How to Hire a Therapist

This was how I was feeling the other day when our longest serving therapist for Alanna announced she was resigning.  In truth, I am very happy for her - she is moving on to a solid full-time job at the school board.  She will be in classrooms and has years of experience working with kids on the autism spectrum.  Some lucky parents are going to be fortunate to have her around for their kids.

On the other hand, she has been with Alanna since she was 22 months old, and she knows Alanna inside and out... she calls them Alanna's "tells".  This is important because she can adapt her instruction based on how Alanna is reacting.  This takes a long time to develop well.  So I am admittedly very bummed about this situation.

Luckily we have already hired a replacement for this therapist.  Here is my advice for hiring therapists.  As always you are free to take it or leave it, or better yet, improve on it.

First - unless you are lucky enough to be in an area with private agencies (which in Canada is pretty much only the larger urban centres of at least 500,000 people), most therapists are independent.  In the South West catchment region for Ontario's Autism Intervention Program, there are no local agencies, though I am aware of a pre-school type program operating in Windsor.

Here is what I've found:
1.  The majority of therapists are women.  This is not very surprising in a profession working with younger children.  Also, men are likely to face huge obstacles (read: bias) against them because of the vulnerability of the population.  I am normally very positive about men working with children.  However, the thought of a male therapist alone with my little girl for hours a week, often working on things like toileting just doesn't sit with me.  It's completely unfair but that's just the daddy protector coming out in me.
2.  The majority of independent therapists are young.  Young being - early to mid twenties.  Most therapists who do well at the profession either get promoted to senior therapist positions (writing programming and supervising other therapists), or they leave in favour of something full-time with benefits in preparation for their up-coming maternity leave.
3.  Even with good pay and other perks, turn-over will be too high.  It takes a long time to train a therapist well, but there are two problems with ABA therapy jobs.  First, to make a living the therapist has to cobble together hours with multiple families.  The pay is therefore highly dependent on how busy they become.  They also have to deal with problems directly with the families and have no one to go to bat for them if there's a working issue.  Second, although most therapists enjoy working with children, it is a little isolating. If the child is presenting behaviours (i.e. you are being kicked, punched, bitten) and/or the child is not verbal (i.e., social behaviour is limited), it is a lot of work, and oftentimes there is no gratification because changes can be slow.
4.  Like anyone else, people leave for good reasons.  They get a better paying job, they want to change to careers, they get pregnant, their spouse got transferred, etc.  It all happens to everyone.
5.  Experience is great but "fit" is more important.  It's great if you can find an experienced therapist, but it will do you no good if the therapist is not experienced with your child's age group, or the way they learn.  I'd much rather hire a therapist who loves young children and is enthusiastic than someone who has worked exclusively with teenagers but has years of experience doing it.  Remember, this person is going to be spending hours together (probably 1:1) with your child every week.  They need to like each other!

I have resigned myself to #3 but wish I could do better.  It would be nice if everyone stayed at least a year but I'm not holding my breath.  Good times.