Thursday 30 April 2015

Birthday Season Is Upon Us

I realized I didn't post an update on the first Birthday Event of the Season: Nathan's movie party at Landmark Cinemas.

It actually went very well.  The kids were far better behaved than I was anticipating.  I did not have to shush or redirect even once.  (I'm starting to wonder if Nathan and his friends were actually temporarily replaced with Stepford children or Pod People.)  The staff at the theatre were pleasant and professional.  Our snacks arrived late as the movie was starting, but the kids didn't seem to mind.  (And neither, quite frankly, did I.)

Everyone liked the movie: Dreamworks' Home.  And Dave and I enjoyed seeing it for the second time around.  It's still the most efficient alien invasion of Earth I've ever seen.  It's done by the opening credits.  This time we were able to watch for some of the inevitable gags that animators love to slip in.  (Spend 3 weeks animating 2 minutes and see how well you resist the temptation to add a visual joke.)

It was a little hectic and frustrating trying to keep track of everyone in the front lobby as it came time for pickup.  Particularly because it was being combined with present opening.  But we got through it and no one has complained about misplaced or kidnapped children, so overall, I'm calling it a win.

Wednesday 29 April 2015

Update on Fundraising for Alex's Service Dog

The month of April is drawing to a close and we managed to raise another $ 500.  With donation matching, that's $ 1000 closer to our goal.  :)

Alex's school is working on a plan for a BBQ and we're hoping to get some donations at the annual Mackintosh birthday party.

Tim Hortons has agreed to donate timbits for the Emerging Minds garage sale on May 10th at 1002 Byron Avenue (next to Greek Orthodox Church).  Every donation to Alex's service dog will get a timbit.  :)

Things are moving along really well.  I'm proud and grateful for all the community support.

Tuesday 28 April 2015

Some Flaws With RDSPs

First, let me say that I think Registered Disability Savings Programs are a good idea.  We have one for Alex and it is a relief to me to know that we are saving for his future.  I think there are some common misperceptions about RDSPs.  This is not a fund to care for adult children throughout their lifetime, but rather a retirement fund for the child which parents are contributing to.

That said, since RDSPs are a relatively new program, there have been some oversights.  This is to be expected.  As something transfers from theory to practice, there are always some real world situations which were not anticipated.  I'm bringing up these oversights because, like all government programs, some lobbying will be required to make the necessary changes.

In talking with other parents, I've identified two areas where I think the plan needs some work.

1) The death of the parents.  No one likes to think about this but are the parents likely to still be around when the child hits 59, the minimum age for withdrawals from an RDSP account?  With most parents having their children between 25 and 35, that puts them at 84 to 94, which means most parents will not be alive to see the money come out of these accounts.

I understand wanting to keep this as "retirement" money, but what if a child is 55 when their parents pass?  He or she would have to wait another 4 to 5 years before accessing funds or else have the government claw back a substantial portion of their earnings (the grants and interest).  I believe there should be a provision to allow adult children or their guardian/representative to access the funds on the death of the primary contributor/caregiver.  RDSPs are supposed to take care of our children once we're gone.  This should be a legislative no-brainer.

2) Divorced and estranged families.  The current RDSP model assumes a cooperative and open communication type of family.  Only one RDSP can be opened per child and the person who opens it (or their legal representative) is the one who can dictate how the money comes out.  So what happens when a couple is divorced?  It becomes a race to see who can open one first and then that person holds all the cards while their partner is left with no options.

This flaw came to light when a friend of mine went to open an account for her child, only to discover her ex had opened one already.  One of the reasons they had split up was because of the ex's spendthrift attitude to money.  She is permitted to contribute to the account, but is worried about doing so because she doesn't want to give her ex leverage over their child.  Although the money must be spent by the child, she could easily see the father convincing him to pay for a vacation or a car or some other major purchase, draining the account and leaving her child with nothing when it comes to his long term needs.

I'm not entirely sure how to fix this one.  One could split the amount of total contributions and grant money between the two parents, but that could end up effectively halving the support of a child of divorce.  And single parent families are already notoriously on the short end of the stick when it comes to available money and resources.  It seems like a double penalty.  This one will probably take some professional consideration to make it fair and no one will end up satisfied.  But an all or nothing approach isn't acceptable either.

I'd love to hear from other parents who have spotted flaws in the system.  Any takers?

Friday 24 April 2015

New Government Program To Help Families With Autism

I don't generally get excited over announcements like this.  I've seen plenty of grand plans be announced and then fizzle out into uselessness.  This one has some real potential, I think, although it also has some challenges.

The proposal (which is being submitted for June 15th) is that families with autism and other complex needs should have help navigating the system.  They are proposing to create a "point of contact" position, a single person who would be assigned to each family as a person to advise, act as an intermediary and coordinate services.  A unique service plan would be created for each child and would follow/be available to any services until they turn 18.  (Plans are being considered to expand this to over 18 but they want to start with something more defined to get the bugs ironed out.)  There would be a new oversight agency created whose job it would be to make this work.

The organizers have asked for input from families.  There was a meeting to discuss our concerns and after we got past the initial anger and frustration, we were able to put together some good suggestions:

- The agency should be tracking what services are available as well as wait times to create a comprehensive map of what is offered and where the gaps are.  This will allow better allocation of public resources and aid in creating a national strategies.

- The agency and point of contact person will need to be flexible.  There cannot be a predetermined one-size-fits-all plan or path.  They will also have to be flexible in terms of meetings, possibly allowing families to meet over the phone or via Skype rather than only operating during daytime, weekday hours.  They will also have to meet regularly with the families.  Too much can change within a year to leave things to an annual review.

- The point of contact person should have the authority and ability to advocate for their families.  One of the major concerns was about individual schools not providing proper support.  As this plan would include the different school boards, the point of contact should be able to speak to them with the weight of the oversight agency behind them.

- The point of contact person will need to be educated or have access to a comprehensive database of programs.  Maybe this could be done by having specialists in the different areas. (Pre-diagnosis, speak to Karen.  School issues, talk to Dave.)  Ideally, the point of contact should be able to direct families to immediate interim help while they are on waitlists.

- The point of contact person will need to be aware of and work with private agencies as well as the public services.  There are simply too many gaps to rely solely on public services.

- The point of contact person needs to be a long term position so that they are familiar with the families.  At a minimum, there must be an established turnover procedure to avoid losing families through the cracks.

- There cannot be an extensive waitlist to get help from this service.  Ideally (and this is their plan), the point of contact person will be assigned as soon as the parents get in touch to say they have a concern.  They will not require specific diagnoses in order to access this service.  (Although a diagnosis may still be necessary to access different programs.)

- There should be a transition plan in place for children and families as they approach the age of 18. 

- The different regional areas should be encouraged and able to share their best practices with other areas.  (Each local area will have a unique oversight group and a regional plan.)

My only hesitation for this program is the current plan to assign the point of contact person from within existing agencies.  This job simply looks too big to tack it on to existing duties and still have a hope of it being done properly. 

As a group, our major concern was the bureaucracy.  There are a large number of organizations which are participating in this process, which is encouraging.  But I've seen organizations talk the talk but then turn stubborn when it comes to giving up a portion of their budget or bureaucratic autonomy.  Without eager participation, this could turn into a bureaucratic turf war.  The speakers assured us that everyone is very conscious of this and are actively working to prevent it.

Most of the families there were experienced families who have been navigating the system for a long time.  If you have ideas or suggestions which would help newly diagnosed families, then you can contact the organizers at  This is not a place to get individual help or to make complaints about services.  They know the system has not been kind or helpful and they are looking to change that.

The plan is to have this agency and the point of contact people available in a year to 18 months.  I'll keep you updated as I hear more.

Thursday 23 April 2015

Fundraising and Some Awesome Kids At South March

Yesterday I went to speak to the Grade 6 class at Alex's school.  They want to raise money for Alex's service dog.  I was a little nervous about going in.  Would they expect me to have plans already laid out?  Or was this something where the teachers were more enthusiastic than the students?

I was pleasantly surprised and blown away by how eager these kids were to do something.  Maybe it's because I'm worn out and cynical that I forget how easy it was to believe that it was possible to make a difference.  They came up with all sorts of ideas, from concerts to bake and craft sales to asking for a special Spirit day at school.  I put in my own suggestion of trying to create an "Autistic for an hour" pledge drive, where students have to complete a task but are being given the instructions in a foreign language and the rules are constantly shifting.

They came up with a great idea of their own.  Doing extra chores at home and donating the money to National Service Dogs for Alex.

The kids knew Alex and his classmates and naively see no real differences between them and themselves.  In a way, that's true.  But I'm far too aware of the gap.  I hope they end up being more right than I do.

Wednesday 22 April 2015

Birthday Preparation Proceeding

Two birthday events coming up quickly.  Nathan's movie birthday party this weekend and Alex's princess party.

I am very pleased with the response from the princess party people (Ottawa Princess Parties)  They were more than happy to come just for Alex and asked lots of useful questions, including questions about his sensory needs and his visit to Disney last year.  (So the princesses can remember what happened.)

I'm less impressed with Landmark Cinemas right now, although I'm reserving judgment for the moment.  When I first booked, the girl was quite enthusiastic and pleasant to deal with.  They said they would contact me the Tuesday before the party to confirm schedules and numbers.  I ended up having to call them and the girl I dealt with acted as though I was personally ruining her day by arranging to have children come for a birthday party.  She kept insisting on strict timetables and wanted to know if I had plans in place to keep the kids from disturbing anyone.  When I suggested an out of the way spot in the theatre, I was shot down and told we needed to stay in the main lobby rather than anywhere past the ticket gate.  She was also pretty snotty about keeping the lootbags and gifts safe at guest services (which had been promised). 

I'm hoping I just got a sulky teenager on a bad day rather than the person who will actually be guiding us through the party process.  But if this is Landmark's attitude and accessibility, they should stop offering parties as an option.

Tuesday 21 April 2015

The Strange Case of Autism Siblings

I was speaking to several parents at the conference on Friday and one thing particularly struck me.  When we talked about the siblings of our children with autism, they didn't present as the typical younger or older sibling.

In my case, both my children have autism but Alex is much more severe.  His needs tend to dictate a great deal of our lives.  However, Dave and I have done our best to make sure that Nathan gets time without the pressure of his brother's restrictions and that when we are with him, he gets our full attention.  Often I've watched as Nathan's desires and feelings get shunted aside, ignored or not even considered in the rush to focus on Alex.  It's one of the fastest ways to get my blood boiling.

In many ways, Nathan is the "big" brother.  He's venturing into areas Alex may never touch, like spontaneous playdates, walking home by himself and doing independent work.  Unlike most younger siblings who get to benefit from the parents' trial runs with the older children, we're learning with him.  I've noticed a strong streak of perfectionism, a drive to achieve and caution and fear about getting things wrong, all of which are typical of oldest children.  He's also unusually reliable for his age group.  He worries about things constantly, seeking to control and direct.  He needs to know what's happening or else it will prey on his mind, especially when it comes to his brother.

But he also has the clowning, attention-getting characteristics of younger siblings.  He's had to compete with the ultimate attention-hog and it has driven him to believe he has to be entertaining in order to be worthy of attention.  (This is something I'm trying to discourage, to help him believe he is worthy just because he is Nathan.)

I've heard similar stories from other parents.  Their neurotypical or less-autistic children simultaneously become caretakers and clowns.  In some ways, they must take on the role of the oldest, while, in reality, still being younger.  Those who are both biologically and developmentally the oldest children seem to be unusually sober and responsible (based on my limited anecdotal survey).  They have been forced to grow up even more quickly than eldest children typically must.

There are support groups for siblings of children with autism, although they seem to be mostly for teenagers and adults.  When Nathan is older, I don't know if he'll want to participate, but it's reassuring to me to know that there is at least an option of connecting with people who will be able to understand his unique circumstances.

Monday 20 April 2015

The Autism and Finance Conference - Results

The Autism and Financial Planning seminar on Friday went wonderfully.  There was lots of information. 

Donna Neff covered why it is necessary to have power of attorney documents and what the limitations are.  People can't just plan for their death, they also have to have plans in place for their incapacitation.  If someone is in a car accident and goes into a coma, their will doesn't kick in and without a power of attorney, it might not be possible to access their accounts to do things like pay the mortgage and support their children.

She also covered how restrictive ODSP (Ontario Disability) can be.  It sounds like they'll take just about any excuse to snatch back benefits, which is why parents have to jump through hoops with Henson Trusts, RDSPs and getting approval for helping out.  If a person on ODSP receives more than $ 6000 over a 12 month period or owns more than $ 5000 in personal assets, then their benefits are clawed back.  And given that ODSP is only a thousand a month, that's not a great amount to live on.

Her final point was to stress seeking professional, experienced help for your particular circumstances.  The law is neither intuitive nor obvious and parents can get caught out easily.

Mattieu St. Denis covered RDSPs and tax planning.  The message was familiar, for the RDSP: start saving early, contribute regularly.  For taxes, get a T2201 completed, consult with CRA to see what deductions are possible and save your receipts. 

The star of the afternoon was Gail Vaz Oxlade.  She was hilarious, direct and earthy.  She spoke mostly about her experiences with her son.  Just like on her shows, she took a direct approach to dealing with him based on what was needed at the time.  She and her family moved to a country home so they could be mortgage free and she could stop working.  If the school didn't have programs or personnel in place, she paid for them out of her own dime and bullied the school into accepting it.  When her son was due to have a particularly inflexible and difficult teacher, she pulled him out of public school for the year and sent him to private school.  She had a great deal of success with the Fast ForWord program which trains children to hear and pay attention to all of the sounds in speech.  (We used the Hearbuilder series, which we also found effective.)

Her advice to parents was direct and clear:

Guilt is a waste of energy.  Focus your attention on what you need to be doing.
Don't get suckered into waiting.  Do everything that you can to deal with the situation now.
Be up front with your kids about your feelings and concerns.
Have expectations for their behavior.  Accommodations can be made but not at everyone's expense.
Share with other parents.  Don't keep your "shameful" secrets, they're nothing of the kind.
Tell your kids what to do instead of what not to do.  Make the lessons as concrete as possible.
Life is about choices.  They may not be easy or without sacrifice but there is always a choice.
Prepare your kids to take their burdens onto their own shoulders.  They have to learn how to manage their environment for themselves.

Easier said that done but I prefer it to the "just have faith and it will all work itself out" approach.  Her son was diagnosed at 4 and is now in college on his own.  The family made a lot of sacrifices to get him what he needed, but he was also expected to take on his own responsibilities.  Gail got him an apartment for school rather than having him stay in residence, one of the accommodations they made for him and they got started several weeks before classes started so that he could get used to going to the grocery store for himself, etc. 

I could tell that she's worked incredibly hard and she was honest that there were days she was ready to give up and despair.  But she always treated them as temporary delusions rather than predictions of reality.  I'm very glad to have had the chance to hear her story.

Friday 17 April 2015

Regathering For A Toileting Push and Program Update

Okay, the title ended up with a bad pun, but I'm keeping it anyway.

We've been working hard with Alex to get him toilet-trained.  Yesterday we met with our behavioural specialist to go over what we've been doing.  There are some unfortunate alarming signs.  We're getting more BMs on the ceiling of his room at night, which suggests he is withholding until he has the privacy to get rid of them in his preferred method.  There's also some doubt and confusion about whether or not he understands what we're asking him to do.

However, there is not much we can do about either of those issues except press on.  The only possible solution to all of the issues (which sadly, include him licking his fingers clean rather than washing them) is to get him reliably toilet trained.

So we have to push on.  We have to try and continue to maintain a positive atmosphere (something I flunked yesterday when I yelled at him for trying to use his fingers to put BM in the toilet for the fifth time in less than a minute) and give him opportunities for success.  We have seen occasional signs of on-toilet production (very small and not enough to drop in the toilet) so we're going to start rewarding those with something extra (have to think of what).  And she suggested we see if we can find a video or animation of someone going in the toilet, so that he can visually see what we are asking him to do.

On the plus side, all the other programs have gone beautifully.  He does better at listening to us without whining and complaining.  He doesn't bolt when we're out (although he does still drift) and comes back when we call him verbally.  He's learned to tie his shoes and they're working on brushing his own hair.  Since toileting is really falling into our laps at this point, we may be able to wrap up therapy come September.  He and the therapists have worked incredibly hard and it's great to see the progress.

Thursday 16 April 2015

One Day Left Until Gail

Okay, I'm a definite fan-geek girl.  :)  When I get excited about something, it's hard to wait.

And I'm excited about seeing Gail Vaz Oxlade tomorrow at the conference.  I'm hoping for some real practical advice about how to balance paying for today without bankrupting tomorrow when your child has special needs.

We've long since trimmed the "extras" out of our life.  No $ 3 coffees, restaurant meals are few and far between (and mostly involve a drive-thru).  I'm lucky in that I found part time work I can do from home which allows me to continue to be available for the boys' needs and still earn some income.  Dave is lucky that his work understands the situation and allows him to be flexible with his hours.  So we have more resources than many families in the same situation.

But it's still a challenge.  And we're not saving much for the future.  Everything goes into dealing with the present.

Hopefully Gail has some ideas about how to change that.

Wednesday 15 April 2015

Being Strong

This is probably the most common compliment I hear: about how strong I am, how other people couldn't do what I do.

Although I know it comes from a place of admiration and encouragement, it ends up leaving me feeling isolated.  I don't think I'm particularly strong and I don't think I'm particularly unusual.

I'm dealing with what I have to deal with.  Just like parents all over the world.  My particular road may have knocked my illusions out of me fairly quickly, but I'm not unique.  Even leaving aside the struggles of parents in war zones, famine zones and epidemic zones, there are lots of parents who are dealing with horribly unfair and difficult situations.

The act of shoving someone on a pedestal creates distance.  It becomes easier to ignore their need for help because the situation seems so alien or because acknowledging it would shatter the illusion of their superiority.  It makes it harder to offer help because surely it would not be as good as what they are already doing.  By insisting that their situation is unique, it makes it harder for them to reach out and connect.  And harder for them to admit when things are not going well.

I'll be the first to admit that I have plenty of room for improvement.  That I have days where I lose the struggle to do what I have to do.  I try to be gentle with myself, recognizing that I'm human and have limits and that cleaning up BMs for over a decade was not the deal I signed up for.  There are days I'm furious with the universe.  There are days where I am so numb it feels like nothing can get through. 

There are many ways in which my life is harder than it needs to be.  If autism treatments were covered by OHIP, our family would not be struggling financially.  If there was a comprehensive list of services, I wouldn't have to spend days, weeks and months doing research to try and discover what is available.  If charities weren't so concerned with looking bad, they wouldn't need to put income caps on their help and we could qualify for grants and assistance.  If we had a better understanding of how to treat autism rather than a bunch of blame-sayers, I wouldn't be in the position of constantly designing and running my own best-guess treatments.

I should be able to spend my time and energy on helping my sons with what they need, rather than jumping through hoops to prove myself worthy to the outside world. 

Tuesday 14 April 2015

A Thank You to Tim Horton's

Alex loves the Tim Horton's drive thru.  Going through it is his favourite part of the week.  Last week, one of the employees asked if he could come by during the morning one day.

It turned out, they had a gift for him:

A little stuffed duck who has been promptly named Pato.  I thought it was very sweet.

Even better, I got a chance to speak to the manager and they might be able to help us with fundraising for Alex's service dog.  They said they might be able to donate some food for us to sell at a community event or something else.  I'll have to do some thinking but things are starting to get moving.

We also spoke to Dave's work and they want to do a fundraising event for us.  Not a bad start to the week.

Monday 13 April 2015

Darmok and Jalad at Tanagra: Metaphor for Autism?

I am reasonably certain that the writers of Star Trek: The Next Generation did not have autism in mind when they wrote the episode Darmok about an alien race, the Tamarians, who speak entirely in metaphor.  Despite the Federation's universal translators, they have been unable to communicate with this species.

But I think they ended up nailing it.  In the opening sequence, Captain Picard is trying to speak with the Tamarian captain only to grow increasingly frustrated by the (to him) nonsensical response.

This is how my children (and to an extent, my husband) go through life.

Because people with autism can miss out on much of the non-verbal and social cueing in conversation, the spoken words can be confusing and difficult to follow.  The more severe the autism, the more context is likely to be absent.  The parallel between autistic loss-of-context and trying to follow a conversation which relies on stories you've never heard is a good one.

The Tamarian tells Picard: Darmok and Jalad at Tanagra (Let's cooperate.)

Picard has no idea.  He thinks the Tamarian is offering him a weapon to initiate a duel and responds accordingly, slapping the knife away and refusing to take it.

The Tamarian must be getting insulted, wondering "Why won't this guy cooperate with me?  He thinks he can fight the monsters on this planet all by himself?  Why won't he just understand and give it a try?"

Aside from the fighting monsters part, I'm sure that Alex inspires these thoughts many times through the day and not just from me.

Meanwhile, Picard is getting equally frustrated, just as Alex does when I'm asking him to do something which he doesn't understand.

At one point, the Tamarians are referred to as having a unique brain structure which thinks exclusively in images.  Ever since I've read how Temple Grandin explains that she thinks in pictures instead of words, I've tried to take that into account with my kids.

In the end, Picard and the Tamarians are able to begin communicating.  Interestingly enough, Picard is the one who immerses himself in the Tamarian method.  The Tamarian does not attempt to learn to speak in Picard's way.  This completes the metaphor with the Federation being the ones who have "autism" and who must learn to adapt to a method of communication which makes no intuitive sense to them and relies on context they don't possess.

Although, we never do see the Tamarians again ... so the Federation must have been happy to stay in their own literal word-oriented world.

Friday 10 April 2015

Autism and Karate

A friend of mine sent me this article/ad about the benefits of karate for children with autism.  I've seen a number of these sorts of articles about how a particular activity is beneficial for children with autism and the conclusion I'm drawing is that the benefit is less about the particular activity and more about the opportunity to practice social skills in a welcoming environment.

The key feature is interest.  A child with autism has to be interested in the activity in order for it to be worth the effort of the added social challenge.  If they're hockey fans, then get them involved in local teams.  If they like computer games, get them into the local gaming community.  I could see it being difficult at first.  We're all uncomfortable in new situations and it takes us all awhile to figure out the new rules.  For a child with autism, this period would be even longer, but once they do find their social footing, they'll discover something amazing: other people who are equally enthusiastic about something the child cares about.

It's not socially inappropriate to talk about karate movies, karate techniques and endlessly repeat and perfect maneuvers in a karate school.  Such a conversation would likely bore the heck out someone in the grocery store but the people in the dojo are karate enthusiasts.  They like talking about all the finer details.  Ditto any other particular obsession.

Any group which gathers for an activity is interested in that activity and will be happy to discuss it at a length which would discourage a random stranger.

Granted there's still some social refinement to be learned, such as turn-taking rather than monologuing or lecturing.  And learning graciously rather than assuming a position as a self-taught expert.  But those are easier without the added pressure of having to deal with monotonous small talk or uninteresting conversation topics.  So I can definitely see how specialty classes could help a child with autism to develop their social skills.

Thursday 9 April 2015

Gearing Up For Birthday Season

It is that magical time where I have to have a minor panic over planning Birthday Events.  This year, I'm actually a little ahead of the curve.

I've got Nathan's friend party more or less set up.  We're doing a movie birthday this year where he and 10 of his friends can see Home in theatre.  The slightly nerve wracking part for me is that I won't be able to confirm details like time and whether or not Home is still in theatres until the Tuesday before the Saturday party.  I'm fairly confident Home will have a long run, there's nothing really to compete with it and DreamWorks has a good record.  But it's not set and that makes a control freak like me nervous.

I've contacted Ottawa Princess Parties to see if they will do an event for Alex.  I foresee three potential challenges with this.  One, he's not a girl, which may throw them off.  Two, I've described him as severely autistic, which may make them nervous.  And three, he would be the only kid, which isn't really a party.  On the other hand, I'm willing to pay their fee, so I'm hoping they're at least willing to talk to me and work something out.

Next is the family party to arrange.  I've set the date but need to work out the time.  I've asked for donations to Alex's service dog in lieu of gifts for Dave and I.  Cake and decorations ... still need to be worked out.

Then there's our at a restaurant family party where we can behave like grownups.  And the friend party/book launch event. 

This is why I'm exhausted come June. 

Wednesday 8 April 2015

Wanting My Kids To Be Better Than Me

I think most parents want this.  They want their kids to be nicer, more successful and better people than they are.  (Definitions of what counts as "better" may vary.)

I'm finding myself teetering on this for Nathan lately.  He's been having regular playdates with a friend to play the LEGO movie video game on Xbox.  They've been slowly working their way through the game.

Now Nathan has already solved most of the puzzles in the game, so he has a tendency to just X,Y,Z through the levels.  I've been encouraging him to give his friend time to figure things out and to make sure his friend has an equal opportunity to enjoy the challenges.

Watching them yesterday, I wondered if I was denying Nathan his chance to shine.  He's good at the game.  By encouraging him to give his friend a turn, am I encouraging him to be less than he is?  Am I telling him other people's feelings are too important for him to "insult" them by being good at something?

Sharing is a good and necessary goal but I think I'm going to have to be careful about how I frame things.  On the other hand, he (and his friend) are young and it's natural for kids to be selfish, so I don't want to make him feel bad about it.  I just want to encourage him to think about other people.  But I don't want to encourage him to think of himself as not as important as those other people.

This parenting thing is a real headache.  It has to have been easier when the sole criteria for "good" parenting was survival.  Kid made it long enough to pop out some grandkids?  Home run.

Tuesday 7 April 2015

Back from a 4 Day Weekend

It's not quite back-to-school-after-March-Break happy, but it's up there.  I'm not sure what happened with our toileting program but it felt like I did nothing but clean up accidents this weekend.  Clearly, I got the wrong end of the Easter Bunny.

I am hoping the blip is just a disruption in schedule and not a major setback.  I guess we'll see how quickly things come back to normal.

Alex is doing better at being unsupervised these days and much better about complying without complaining.  Separating the rewards so that iPad is for compliance only has definitely helped.

I've come up with a strategy for lengthening Alex's time on the toilet.  I sorted our songs on iTunes by time and created a playlist whose songs are all between 2 and 2.5 minutes.  They're all songs that Alex likes so now I make him sit for two songs and he can pick the second song (which is invariably Toot, Toot, Chugga, Chugga (Big Red Car) by the Wiggles).  I'll have to talk with our behavioural specialist to see if I'm setting myself up for a problem, but I'm hopeful.  The evidence suggests he's going to have to sit for at least 10-15 minutes to have a shot at relaxing long enough to actually go, so I need some sort of strategy to keep him there.

I found out that my cousin raised over $ 2600 for Alex's service dog with her housewarming and we've been told that another $ 2600 will be matched for that.  My mom raised $ 500 for her birthday, so we're creeping steadily towards our goal of $ 30 000.

I'm going to talk to our local Tim Hortons to see if they'd be interested in helping out.  Alex loves the drive-thru and the people there know him and like him.  Apparently one of them got him a present but has been moved to the morning shift, so I'll have to take him one morning to have a visit.  Of course, Tims is involved in a lot of charities already so the individual franchise owners may have to stick with the official company options.  But it's worth asking.

Thursday 2 April 2015

Nathan Learning His Consequences

Having worked hard to get Nathan to understand what is and isn't a socially appropriate reaction to frustration or upset (telling your feelings is good, yelling and hitting people, not so much) we are now starting to work on getting him to understand that there are consequences to his choices.  I.e., if you choose to threaten your brother with bodily harm for having touched the computer, you may lose computer time.

Yesterday, he yelled at his teacher for asking him to put his agenda in his bag.  She told him that it was not okay to talk to people like that and when he continued to refuse, he lost his art time privileges.  (He brought the project home to finish.)

I think this was a good balance.  Yelling at people to get what you want is not a good strategy (although I have met a number of adults who never learned that lesson).  If you yell, people are less likely to cooperate and could start to actively work against you.  In the end, it was a minor blip and it got a minor consequence.

It's hard to balance out because I do want him to respect and understand his feelings.  I don't want him squashing what he feels down and putting on a pleasant expression because his feelings might make other people uncomfortable.  But there is an appropriate way and an inappropriate way to express those feelings.  I'm still working out how to get both messages across.

Wednesday 1 April 2015

Happy April Fools

Autism can be cured by eating spinach!  :)

Eh, just as plausible as some of the other options.

We got two good jokes in on the boys.  First, Nathan woke up while I was checking on him before going to bed myself last night, so I told him "Time for school."  His little face went into a laugh-inducing study of bewilderment and sleepiness.  I then told him "April Fools" and he went back to sleep. 

Second joke, I flipped the calendar to May instead of April and told them they'd slept through April.  Nathan immediately realized I was fooling them.  And even Alex got in on the joke, telling me "April" and switching the calendar back.

Last joke, this one on Dave and was Nathan's idea.  Dave is very picky about his cereal.  He only likes having Life in the morning.  So we switched the bag inside the Life box with the bag from the All-Bran box.  Should be entertaining.