Tuesday, 23 December 2014

More Opportunities (March Break Respite Fund and Free Tablets) and A Merry Christmas

Hi everyone,

Autism Ontario's site says it has opened up its March Break Respite Fund for 2015 but the link they've attached to their email isn't working so I won't include it here.  I'm hoping the site is just temporarily down and we'll all be able to apply over the holidays.

I also was forwarded this article about Samsung giving away tablets to families with autism.  The article doesn't explain what the criteria are but the deadline is January 16th.  The program they describe, Look At Me, sounds interesting.  It's designed to encourage children with autism to increase their eye contact and correctly identify emotions on people's faces. 

I think this will be my last post for the holidays.  I hope that everyone has a restful time celebrating the winter solstice celebration of their choice.  Thank you all for following my family's adventures and misadventures. 

Sunday, 21 December 2014

No Cost Vacation For Families With Autism

The deadline to apply for the vacation is December 31st.  I don't know if travel costs are included but a week in the sunshine sound pretty nice right about now.
Here is the information on the contest:
In January 2015, 52 CANADIAN families who have a child with autism will be selected to spend a week at this beautiful property on the Emerald Coast of Florida, USA.  A no-cost vacation!

"In early 2012, Global Governance Advisors (GGA) purchased its first vacation home in Sandestin, Florida to serve the needs of families living with autism. The GGA team raised $2 million for this initial residential property on Florida’s Emerald Coast that offers no-cost vacation stays to children with autism and their families.
GGA Vice Chair Luis Navas has firsthand experience with autism, as his son developed a regressive form of the condition at age 2.  Mr. Navas describes his motivation for purchasing the Emerald Coast vacation house, which comfortably sleeps 14, as stemming from a conversation he had with a corporate CEO who had quietly contributed the majority of his income to charitable endeavors."
The one week stays are awarded to Canadian families affected by autism and in a financial position which does not permit them to vacation.  The families are selected in January.
Each family is asked to submit:
1. an overview of their autism story that is at least 500 words
2. proof of autism diagnosis
3. proof of being in financial need (T4)
4. a family photo
Email your application to: Luis.Navas@ggainc.com

"For more information on how families living with autism can reserve some vacation time at the Sandestin location, please contact Luis at:

Friday, 19 December 2014

Nathan Quote

Nathan has been quite excited about seeing his aunts over the holidays.  He's developed quite a few plans for them, going to museums, going swimming.  If it's up to him, they'll spend the entire time doing things with him.

Last weekend, we went to see Penguins of Madagascar (which was cute) and one of the trailers was for Annie.  Nathan has been looking forward to Annie for awhile, so when it came on, he announced that he wanted to see it.

Me: Okay, but it's out at Christmastime and remember your aunts are going to be here.

Nathan: (pondering)

Me: We can go see it after they've gone home.

Nathan: (slowly and with great seriousness)  No.  They should come to see it with me so they can enjoy it.

Thursday, 18 December 2014

Planning for the Holidays

As always, despite my attempt at early preparations, I have been caught by the last minute.

Last night I was scrambling to put together the Christmas cards for the teachers, educational aides and therapists.  With only today and tomorrow left, I realized the last minute had definitely arrived.

Each of them got a picture of Alex/Nathan/both and a gift card (Tim Hortons, Staples or Chapters).  It's not a lot but considering that Alex has one teacher and 3 aides, Nathan has 1 teacher and 1 aide and there are 2 therapists, even small amounts add up quickly.

This weekend, I have to put together the Christmas card packets to send out to family and friends.  I'm including pictures from Disney for them as well as the usual family portrait.

I think I'm also going to have to have a wrapping party for myself.  Things are moving quickly!

Wednesday, 17 December 2014

Snow Day Conundrums

Today is the day every kid loves: Snow Day.

Except for my kids, because I'm mean and make them go to school anyway.

I've heard a lot of debate about whether or not kids should have to go to school during a Snow Day.  The schools are open but there's no transportation.  Roads are slick and traffic around the school tends to be bad as parents who don't usually drive their kids rush to drop them off and get to work.  On average, only about a quarter to a third of children are present on a Snow Day.

I've heard many parents complain that if the transportation is shut down then the school should be shut down as well.  The schools don't shut down since they would then lose provincial funding for that day, which does make the situation more questionable.  After all, if it's not safe for the kids to come, how is it then safe for the teachers to come?

I always had to go to school on a Snow Day if we were within walking distance of the school.  I liked them.  It was quiet with plenty of time to read or do crafts.  In fact, one teacher used to send us all (usually only 3 of us) to the library after lunch for "free-time".  In retrospect, I wonder if she ditched out early.

The boys seem to like them too.  They have one on one time with the teachers and a lot fewer distractions to cope with.

It's a bit of a hassle having to drive Alex to school and then pick him up but it all works out.  And I'm not struggling for childcare options, which makes life easier for me.

Tuesday, 16 December 2014

Incompatible Behaviours

Behaviour therapists will tell you that the best way to correct an unwanted behaviour is to replace it with an incompatible behaviour.  The example usually used is to prompt a child to clap when they're flapping their hands.  It's impossible to both clap and handflap at the same time and clapping is more socially acceptable.

Coming up with a suitable incompatible behaviour taxes my creative powers but I had a good one yesterday.

We were at the dentist for Nathan and he kept reaching up to fidget with the tools.  When I told him to keep his hands on his tummy, he started pushing them inside the waistband of his pants.  So I needed to come up with a behaviour which would prevent both fidgeting with the dentist's tools and putting his hands in his pants.

My solution: hook his thumbs in his belt loops, like a cowboy.

It worked.  As long as he had the thumbs in the loops, he couldn't stick his hands in his pants or reach the tools.  And if a hand drifted up, I just reminded him to put the thumb back in the loop.

Monday, 15 December 2014

More Good News: Service Dog Approved

Over the weekend, we got notice that Alex has been officially approved for a service dog. 

There's still an 18-24 month wait before we're likely to receive our dog, but we're officially on the list.

There was a reminder about fund raising and that it wouldn't affect how quickly we got our dog but was still encouraged.  They even gave us a code so that they can track which donations are for which child.  (Although, again, they emphasize that the donations don't actually go towards that particular child's dog but rather into a general fund.) 

To me, if it really didn't matter, they wouldn't track it.  But I don't mind, donations are how they keep their business afloat, and research shows that people are more generous if their names are attached to a donation.

There's a workshop on the training process and what a service dog can and can't do for a family.  We'll get to attend that via Skype or a phone call because of the distance between us and them. 

Then it's the seven day parent training workshop, which we must attend (at our own expense) and where we will get final approval and get to bring the dog home.

I'll have to do some thinking about fundraising.  It's not really my forte but I'm sure I can get some suggestions.

Friday, 12 December 2014

Reviewing Progress

We had a meeting yesterday with the staff from Alex's behaviour program to review his progress.  The results are very encouraging.

His compliance level is between 80-90 percent, which our behaviour therapist tells us is really as high as it should be.  (We don't want him to obey any instruction from any person without thought.)

He's now sitting for 3 minutes or more on the toilet without complaint.  The trampoline park is clearly encouraging compliance in that respect.  He's had three successful BMs on the toilet, which everyone is pleased with.

They're going to begin an academic program for him, focusing on his word comprehension and verbal skills.  We're going to expand the materials for reading comprehension, using song books, comic books as well as stories and non-fiction.

His aggression and self-injury have gone down significantly.  We still get blips and spurts but we're also getting days without them.

I'm really pleased with our progress. 

Wednesday, 10 December 2014

Debate on Physical Restraint

I was debating the wisdom of teaching parents techniques for physically restraining their children with a friend and I thought it would be interesting to share some of the points on both sides.

Against: There is always a risk that either the child or the parent could be injured during a physical altercation, thus parents should be discouraged from using physical methods of control.  We discourage spanking and other methods of corporal punishment, physical restraint is more of the same.

For: Some children with autism (and other challenges) can and do engage in physical confrontations with their parents, siblings and other children and bystanders.  A parent who knows the proper techniques can restrain their child to prevent harm to themselves and those around them.  They are less likely to cause harm than an untrained parent, who is likely to still try restraining the child, but with less chance of success.

Against: Since it is upsetting to be attacked or watch your child attack someone, parents are likely to be angry when attempting to restrain their child, making it hard for them to judge their strength and speed.

For: A trained parent, the confidence of being able to deal with the situation makes it less likely they will become angry.  Just like knowing the proper behavioural techniques makes it less likely a parent will become angry at a child's improper behaviour.  If you know how to deal with it, the situation is less overwhelming.

Against: Parents should focus on behavioural solutions, not physical ones.  They are more effective long term and solve, rather than mask, the problems.

For: Behavioural solutions are more effective and better long term.  But they take a long time to work and parents are stuck with difficult situations in the meantime.

Personally, I'm in favour of giving parents the tools they need.  I received training on physical restraint techniques and it's saved myself and others from injury a number of times.  It doesn't always work, but it means I'm not wading in helpless when Alex is trying to attack someone because he feels overwhelmed.  My goal is always to try and prevent such incidents by being aware of his triggers and sensitivities and we've done extensive behavioural work to try and eliminate aggression as his response to frustration.  But the reality is that there were and are a large number of incidents where I needed to intervene.  And so I'm glad I knew what to try and more importantly, what to avoid at all costs.

I didn't include it above but I have heard the argument that parents should just take the hit from their child if that is what is necessary during a physical tantrum.  The problem with this argument is that it potentially leaves the parent incapacitated.  I've had my nose cracked and ended up with blood pouring down my face (because I wasn't holding Alex correctly and he got my nose with his head.  He was four and a half at the time.).  At that point, I was helpless to do anything to deal with him and if we hadn't already been at home, he could have taken off or hurt someone else.  People shouldn't assume that a child cannot cause any real harm.  They may be smaller, but often they are not holding anything back, which means they can do real damage.

Also, the time when a parent can physically intervene is limited.  As a child gets larger and stronger, physical intervention gets riskier.  More force is needed and the risk of injury to both parent and child is greater.  It is always better to deal with aggression while the child is still small.

I'm sure plenty of people will be horrified at the idea of restraining a child and that's why there's a debate about it. 

Tuesday, 9 December 2014

Visit to Santa

For the last week, Alex has been working on "earning" a visit to Santa and a ride on the bus in therapy.  Yesterday, he earned it.

I drove him and the therapist out to Bayshore, expecting not too much delay to see Santa and instead found an hour-plus long line.  This put us in a real challenge since we had to be back at home to pick up Nathan and the therapist had an appointment of her own to get to.

We waited, hoping the line would move quickly but after an hour (and with 10 minutes left before absolutely must leave time), we were only halfway.  I tried to prep Alex that we might have to leave without seeing Santa and he was miserable about it.

I went to the front and asked one of the elves if there was any way we could have an exception.  I'd heard they were making exceptions for kids with disabilities, but generally, if we can wait, I prefer to do that.  It's good practice for the boys and a more realistic and fair option.

The elves got him in to see Santa right away and he asked for a Super Grover 2.0.  He remembered his manners and seemed thrilled to get to spend time with Santa and the elves.  We got home in time for Nathan and the therapist got to her appointment on time.

Thanks Bayshore Santa and crew, you made his day.

Friday, 5 December 2014

Cracks In the System and Waitlists

I came across this article yesterday about an autistic boy in Gloucester who is somehow considered "high functioning" enough not to qualify for help within the school board but still needs assistance.  His parents have been told he doesn't qualify for the autism class within his school and is only being permitted to go to school part time because of behaviour issues.

What really caught my attention was the statements from the school board at the end of the article:

"Is there a waiting list at any school?

As a result of our move to a geographic model for autism classes, there are currently no children on the waitlist for ASD. There are no children on the waitlist for DD classes."

That statement is, I suspect, the reason why this boy is not receiving help.  A few years ago, there was much ado about waitlists and the government and other organizations promised to eliminate waitlists.

Unfortunately the strategy seems to be to deny people entry into the waitlist rather than expand services to meet the need.  I've heard of several families being discouraged from going on the waitlist for services with OCTC, even though that denies them access to different services which require them to be on the waitlist.  The school board seems to be taking a similar approach, insisting that children don't need special help, it's just a matter of discipline from the parents and teachers.

For the record, I think the teachers in the school board do amazing work.  They struggle among so many handicaps and regulations to find ways to help their students.  The problem is with the board and with managing perceptions.  They want to be seen as proactive and supportive but don't want to allocate more resources or risk being accused of favoritism.  So they refine the problem to make it seem better than it is.

Rather like saying that we don't have a homeless population, instead we have a community of "outdoor enthusiasts". 

Thursday, 4 December 2014

Nathan Quote

Yesterday, Nathan announced at dinner that when he grows up, he's going to get a job at Emerging Minds.  Then he can stay home and take care of his kids.

I thought it was sweet.  :)

Wednesday, 3 December 2014

Increase in Head-Banging

Over the last two weeks, we've seen a big increase in head-banging frequency and severity from Alex.  His compliance (without complaining) has gone down. 

Dave and I have been talking about last year, when we saw similar behaviour after we reduced his medication.  It was supposed to be the start of a gradual weaning but when reducing it by 1 ml daily produced such difficult behaviours, we never went past that threshold.  We kept it down for a month, waiting to see if his behaviour would stabilize and it never did.  And it took another 3 months to get back to our baseline after we went back to a full dose.

This year's behaviour has no such explanation and is casting doubt on our results.  Perhaps his behaviour had nothing to do with the medication.  His doctor reaffirmed his dosage within the last week, so it's not that he's outgrown the original dosage.  Maybe something else happens at this time of year which triggers the difficulty.

If the pattern is consistent with difficult behaviour lasting until March or April, then we'll have to start suspecting that there's a seasonal trigger.  If this is a short term burst (likely triggered by the changes in expectation and routine), then it should resolve itself much faster.

Meanwhile, we've had to institute a policy of removing toys when he headbangs.  No attention, simply collecting a favoured toy and putting it out of reach.  Once he's calmed down, he's warned what the next toy target will be if he headbangs again.  If he's beginning to do the anticipatory whine which preceeds a headbang, then he gets a warning.  He is definitely using the headbanging as an attention tool.  He will look to make sure we're noticing how hard he's banging.  My hope is that losing the toy will make it not worth it, particularly if he's not getting any attention for it.

Tuesday, 2 December 2014

Christmas Shopping With An Elf in Tow

Every year I book off a day to do the Christmas shopping.  I find hitting the malls during the week in early December is less cringe-inducing than trying to muscle through the crowds on evenings and weekends.  It's usually part of a careful plan, booked over a month in advance.  This year, I planned for Dec 1st.

Which is why Nathan's cough and sniffles yesterday made for a real challenge.  I had two separate questions to evaluate: should he go to school and should I still go shopping?

Should he go to school?  That one was obvious.  He was hacking like a two pack a day smoker.  I had to remind myself that if it wasn't Shopping Day, this wouldn't even be a debate.

Should I still go shopping?  Perhaps it wasn't community-minded of me, but I decided to bring him along.  He wasn't running a fever and he seemed to be relatively high energy.  I decided to take him with me and see how far I got. 

Now there had to be a few caveats.  I couldn't buy any of the planned presents for Nathan or Alex.  Nor could I send Santa any suggestions for his presents for the boys.  But I could still buy the presents for the rest of the family.  Whether or not Nathan will keep them secret is an entirely separate issue, but he was fairly bored so I'm hoping he wasn't paying close attention.

I managed to get almost everything done.  There are still a few hold-outs where inspiration did not strike.  I brought along Nathan's iPad, a few books and his headphones.  Those definitely helped, especially since I had to pick up some new jeans for myself, which left him sitting in a change room with nothing to do.

He has decided that Christmas shopping is really boring and doesn't want to go again.