Time to Prepare For Summer:Ottawa Parks and Recreation

This sneaks up on me every year.  I'm challenged with planning March Break and suddenly it's time to finalize our summer schedule.

The Spring-Summer 2014 Registration Guide is out for Ottawa Parks and Recreation.

Swimming classes begin registration on March 3rd at 9pm.

All other programs begin registration on March 5th at 9pm.

These programs tend to fill up fairly quickly, especially the Special Needs programs, but they are relatively affordable and it's a good opportunity for your children to try a bunch of different activities.

Preparing For Re-Assessment

Next week, Alex starts a new psychological assessment.  He hasn't been assessed since he was four, which means five years of development.  We're seeing one of the psychologists at Emerging Minds.

It's a big chunk of time and money to have your child privately assessed.  But I think it's worth it, particularly since we're considering doing another round of intensive behavioural therapy.  We need to know where he is, what his strengths are and what needs to be worked on, before we can start to change anything.

I'm starting to dig up the old reports to bring with me to the intake appointment.  Luckily I have them all in our file cabinet (my obsessive-compulsive organizational tendencies help for once!) but I'm planning to make copies to bring.

I'm feeling a strange combination of laid back and nervous.  On the one hand, I know and trust the people at Emerging Minds (as I should since I work for them).  This is all stuff I've been through before.  On the other hand, I'm scared I'm going to find out I've overlooked something really obvious and basic.  Something which will make me feel guilty and stupid.

I was filling out some forms and I realized there are a lot of things I've simply adapted to.  They wanted me to list out areas of concern so I automatically put in toileting and eating first.  It was only after I did a few pages that I realized I should put his bolting and self-injury behaviour on that list too.  I guess I've just accepted the latter two as a part of taking care of him.  If I can change them, of course I would want to, but I guess a part of me didn't think they could be changed.

We won't know the results until the middle of April.  He'll have one or two appointments a week for the next five weeks.  That's lots of time off school and work.   But I think it will be a relief to know what we're dealing with and have a plan.

Update for Service Dog

We got a response from the staff at National Service Dogs confirming that our application had been received and that the next step is a home visit sometime in the next four to six months.

I'm kind of hoping that the four to six months count as part of our two year waiting process but the documentary Paws for Autism was fairly specific about a two year wait after approval.

Either way, it gives me a timeline, which always makes me feel better.  Without one, I have a lot of nervous energy being manufactured to help keep me aware and on top of the situation.

We also got some good news that extra funding came up for Autism Ontario's March Break camp funding so both Alex and Nathan are funded this year.  It's not a huge amount but every bit helps.

Special Needs Camp and Program Fair in Ottawa

This is a good opportunity to see what programs are available in the Ottawa area.

The fair is on Saturday, March 22nd from 10am to 3 pm at the Jim Durrell Arena at 1265 Walkley Road. 

They're covering:

Specialized Summer Camps (Day and Overnight)
Specialized Programs
Integrated Camps and Programs
Organizations and Associations

Camps and programs tend to fill up very quickly and my experience is that they aren't well advertised.  You have to know what you're asking for in order to find them.  This is a great opportunity to learn what's out there.

For more information, the contact person is Christina McCormick at 613-580-2424, extension 29291.

Back To Work

I let a lot of things slide while I was sick and now it's time to get back to them.  First on my priority list is getting my draft of Revelations polished for beta reading.  After that, I'll be submitting it to an editor and seeing about getting it published online. 

I've been flip-flopping a bit on this.  We have an agent coming in May to our ORWA meeting and she will be taking pitches.  Do I pitch to see what happens or do I just forge ahead with self-publishing?  Luckily I still have lots of time to make a decision.  I'm leaning towards just self-publishing at this point. 

Other priorities are getting things ready for my sister's wedding in July.  I have to book our hotel, see about getting a dress (or two, it's a three day event!).  If I can't find a dress, I'll have to make one. 

Another temptation on the craftwork front is possibly making myself a costume for Comicon this year.  I love getting dressed up and this is one of only two socially sanctioned opportunities to do it.  :)  If I do it, I've decided on Delenn from Babylon 5 (one of the few non-skimpy female costumes available).  It would be a lot of work but I think I'd enjoy myself.

I also have to start booking and planning for our trip to Disneyworld with Alex in the fall.  Nathan will stay behind with his grandparents (and he'll get his own trip in two years).  With only one child, we can make sure we don't have competing agendas leading to squabbles and tantrums.  If Alex wants to stay at the park, we'll stay at the park.  If he wants to go back to the hotel, we go back to the hotel.  I have to look into issues of how to feed him while we're there and what special activities to book.  He loves the Disney Princesses and the classic Disney characters, so I'll work with that.

I also need to look into getting someone else to replace Sally for the end of day pick up.  I'm glad she got the job but between her being gone and my parents being gone, it's going to be tough to coordinate things for the next few weeks.

I also have the usual rounds of activities, laundry and appointments to deal with.  It's going to be a challenge but, hey, that's what moms do.  (Apparently.)

A Pleasant Side Effect of Being Ill

Struggling with this cold has brought at least one silver lining to our family.  As my husband goes down for the count with his infection, it suddenly occurred to me that I haven't had to clean up a toileting accident for my youngest in over a week. 

I checked with Dave to make sure I hadn't just missed an accident and after a moment of befuddled thought, he agreed with me.

Sometime over the last three weeks, my youngest has learned to listen to his body and just go to the toilet.  We had been using screen time as a motivator but with being so sick, I wasn't enforcing that any more.

I believe that it wouldn't have happened if we hadn't guided him up to that point but clearly, the last hurdle had become something of a battle of wills between the two of us.  One I could never really hope to win without his consent. 

I'm really proud of him.  This wasn't easy.  We're probably not completely out of the woods, but we've definitely turned another corner.

For any families struggling with similar issues, here are the steps we took:

First, we associated the washroom with pleasant things (treats and toys).  He didn't have to actually sit on the toilet, just come voluntarily to the washroom.

Next, when he had a 100% success rate with the previous step over a period of several weeks, we upped the requirements.  Now he had to sit down on the toilet to get the treat.

We started preparing the next step with a social story I wrote about "Mr. Mucky" about what happens to leftover food in your body and how that food much prefers going on a waterslide ride in the toilet than being squished in your pants. 

Next we had him sit on the toilet with his pants pulled down.  After 30 seconds, he could get up and get the treat.

Then we started having him sit on the toilet for longer periods.  We used an iPad to let him watch movies and videos.

Next we started restricting the iPad to make it exclusive to the bathroom.

(I also began using a gentle laxative at this point to make sure any BMs were easy to produce.)

After he started to get the concept, he would get a reward for taking the BM from his pants and putting it into the toilet (usually by shaking the underwear, we didn't make him touch it.)

When he was comfortable with that step, we upped the ante again, giving him a little reward for putting it in the toilet and a really big reward for actually going in the toilet.

We restricted screen time (as we discovered it was often too distracting for him to pay attention to his body) and held it as a reward for going in the toilet.  If he had an accident, he lost his screen time for the day.

Then we began making him have to do several days in a row to get the unlimited screen time.  That's pretty much where we were when I fell sick.  We hadn't been able to successfully move to the next level where he would just go without a specific reward.

It was a long process.  Almost two full years from the start to now.  But we stuck it out and if I dare jinx us by saying so, it looks like we've succeeded.

Sandtraps of Social Convention

My husband has been looking at Be Different: Adventures of a Free-Range Aspergian and he mentioned a particular scene.  The author was on a date at a fancy restaurant and was served asparagus.  As was his custom, he picked up the stalk and started to mince it with his teeth.  (The visual I have is rather like feeding a log into a wood chipper.)  It was only after the tenth piece or so that he noticed his date looking at him in horror and after a few moments of wondering what was wrong, he guessed he must have tripped over what was socially acceptable.

It got me thinking because this is something I worry about with my boys.  I don't want to quash their individuality but I also don't want them to lose opportunities because of social disgust.  And sometimes, there are so many quirks and oddities that, as a parent, I have to pick which ones to tackle.  Which leaves the others out there like potentially dormant traps.

Social acceptedness is very important yet it is also one of the most difficult challenges to directly address.  If we see someone behaving in a peculiar fashion, most people will not confront that person directly.  Instead, they whisper about it to their companions and begin a slow withdrawal from the peculiarity.  For someone unable to read the cues around them, this leaves them in a baffling isolation and they will often conclude that there is something inherently wrong with them since no one ever seems to want to be around them.

Manners and social conventions are often illogical and arbitrary, but necessary.  Which is how I've always presented them to my boys.  This is just what we do, a non-optional social protocol.  I'm hoping that recognizing that they don't make sense will help undercut some of the inherent resistance. 

The 100 Day Cold

According to sources (okay, my husband), doctors are calling this year's bug the "100 Day Cold" and it is aptly named.  At least in my case.

Recovery may be incremental but it is happening, so I apologize for being an irregular poster of late.

It's been a very surreal experience for the last three weeks for me.  I find it difficult to read for more than a few minutes at a time, so my usual favourite pastimes (reading and writing) were suspended.  I finally finished the first draft of my novel just before this hit and I was starting to polish it up at a respectable pace of a chapter a day.  However, I've lost almost a month of work-time with fuzzy eyes and a dazed brain.

I've ended up watching more TV than I've watched in the last four or five years.  Mostly Python Hunters, Survivorman and Dr. Phil.  I also watched a three part miniseries on Vikings and all of season 3 of the BBC's Sherlock, although I may not have retained quite as many clever plot details as normal. 

Work has also been a challenge as it takes me twice and three times as long to do things.  Luckily, it's been relatively slow but I'm still far more backed up than I would usually be.

I miss having my pre-sickness brain.  I'm grateful to still have enough processing power to get by but I'm used to having a certain reserve to muse about such vital issues as how Fred Dukes (the Blob) got a tattoo in Wolverine: Origins when his skin is invulnerable or reviewing the family schedule for the week or wondering why the Hokey Pokey is a wedding staple.

Or what point of interest or amusement I'll be posting that day.

Thank you everyone for your patience.  Like Arnold, I will be back.

Nathan Quote of the Week

 A laugh to start everyone's week.

Nathan and I went to the Lego movie this weekend (everything is awesome!!!) and really enjoyed it.  Initially we were going to see a showing at 11:45 but it was sold out and we went to the one at 12:30 instead.

Nathan did very well with the unexpected delay.  We played some games and then, before getting our popcorn, I insisted we visit the washroom.

To my surprise, Nathan refused to go into the washroom with me.

Nathan: Mommy, that's the Women's washroom.

Me: (not following) And?

Nathan: And I'm a man.

I honestly thought I had another seven or eight years before he would say that with a straight face.  But diminutive or not, he had a point.  I explained that it was permissible for men to come into the waiting area of the washroom (since I did not want to leave him unattended in the lobby). 

Now I'm just going to have to start thinking up some safety strategies for separate washrooms.  But the sight of my six year old explaining that he is a man will keep a smile on my face for some time to come.

Happy Valentine's Day

Today is arguably the most commercial and contrived of the holidays, but nevertheless, I'm going to try and find something genuine and worthwhile in it.

There are all kinds of love and I think this is a good day to be grateful for them.

I'm grateful for the uninhibited and exuberant love of my children.

I'm grateful for the enduring and enfolding love of my friends.

I'm grateful for the giving and dramatic love of my family.

I'm grateful for the warmth of love for humanity which is expressed in kindness and cheerfulness between strangers.

And I'm grateful for the passion and strength of romantic love.

Happy Valentine's Day.

Lecture on Healthy Sexuality

On Wednesday night, I grabbed my cold medication and some caffeine and took the risk of pushing myself into relapse in order to attend the Citizen Advocacy lecture on healthy sexuality for people with disabilities.

It was very helpful and useful.  Worth the risk of being almost completely useless the next day.

It was reassuring to hear that we're on the right track with our boys, attempting to teach them the difference between public and private space and activities, and the parts of their body which are private.

There were suggestions about books for teaching them about puberty, videos for helping them understand what is and isn't a healthy relationship (Flirting or Stalking?), advice about areas where young adults with Aspergers and autism can have legal difficulty (defining consent, expectations).  Thank the gods I wrote it all down because my brain currently feels like it's trying to think through wet tissue paper.

I will do a longer update later and try and give some of the highlights.  But for now, I'm still sick and struggling with coherence.

Still No Word About The Dog

I know National Service Dogs received our application but I guess we're still in the 2-3 week processing period.

So still no word on when we can expect to hear whether or not our application has been approved or rejected.

I'm not good at waiting without an end date.  I even hate waiting at traffic lights when the opposing light is green and the little walk guy is still telling pedestrians they have lots of time to cross.  I do very well once I know when the end time is, I have no problem being patient.  But I like to know how long I'll have to be patient.

The Call From School

Now that my brain appears to be ready to put words together into coherent sentences again, I can start posting again.

Yesterday, I got a call from Alex's school.  He wasn't precisely sick, at least not by the standards of the Board of Education, but he wasn't really well enough to have a productive day.  They couldn't officially ask me to take him home but they wanted to ask me to take him home.

Now, this was a tricky decision for me.  On the one hand, if he's not doing well, then there's no point in forcing him to continue at school.  He's not going to do well or learn anything.  On the other hand, I do not want to encourage an association between non-compliance and getting to come home.

I was frank with his teacher: I was willing to come get him but only if we could make sure he didn't think he was being rewarded for "bad" behaviour.  The teacher agreed and we worked out a plan.  Since his school is close, she would call when he'd had a good period and then I would come in and get him.

It worked.  He complied with an activity and then his teacher asked if he would like to go home.  He said he would and the call was made.  I came and got him, we went home and had a quiet afternoon.

I'm pleased with the cooperation between the school and our family.  So often, we hear of teachers and principals working against the families but my experience has mostly been positive.

Struggling Back Towards Health

My karate teacher likes to hold Bruce Lee up as an example.  Not just of fist-flying and kick-wielding vengeance but also of the dangers of turning your body into a finely tuned machine.  Lee's body was so finely tuned that taking a simple over-the-counter painkiller killed him.

I think there's probably something equivalent at the other end of the spectrum.  When a person is constantly under stress and operating at the edge of capacity, it doesn't take much to knock them down and keep them down.

A simple cold/flu has managed to keep me brain-fogged and bed-ridden for four days.  I'm still not anywhere near full capacity.

Not as dramatic as Bruce Lee perhaps, but then I also can't knock someone through a wall with a one inch punch.

A Partial Answer

It turns out I may not be an incompetent parent.

Just a sick one.  As in, bad flu which my children also have.  Fever, aches, a headache that feels like I'm cramming six feet of brain into nine inches of skull, congestion and a sore throat.

If this is how they felt, then some aggression may be understandable.  Not excusable but at least not a sign of impending catastrophe.

Days I Just Need To Cry

Last week, I had a horrible day.  It felt like a punching contest between me and the universe and by the afternoon, I was ready to tap out.

First, one of our respite workers got a job with the government.  I'm pleased for her, but it gave me less than a week to find a replacement.  And this is the job I had such difficulty with last year.  I still don't have any good prospects for anything beyond temporary fixes.  I have most of February worked out but not things which can be long term solutions.

Next, my father had car trouble, leaving my anxiety to spike about whether or not he was going to be able to make it to help with picking up Alex.  Luckily, they did manage to get there but my dad is also going back to work, making his continued participation uncertain.

Then Alex's tutor cancelled.  She was sick.  Alex has been having very bad days of late and I'll admit, I was looking forward to having someone else take care of him for awhile. 

Finally, my cleaners called to cancel.  At that point, I was just waving a white flag.  I couldn't even get upset any more.  There was just too much.

Alex's behaviour is another stressful situation which I can't seem to get a handle on.  I wasn't looking forward to having to tell the various people who work with him that I need to cancel some of his activities until he can start coping again.  And I'm dealing with being kicked and hit, yelling and screaming and fighting over what would normally be quite simple demands.  It's not like him.  And whenever I mention pulling back on his schedule, I invariably get the "but he enjoys it so much" and "he's doing so well" response.  I'm exhausted from having to explain that even something enjoyable can be too much and that he's not doing well at all.

I'm honestly afraid that this is a start for some kind of downward spiral, something I'm not going to be able to get ahead of.  And Nathan is also starting to show signs of aggression and stress, making me wonder if this is the start of his exodus from integrated school and activities.  It's also making me wonder if I'm a complete failure as a parent since my children are both showing similar symptoms.

There is nowhere I can't second-guess myself (or have others do it for me).  All I can do is trudge ahead with what I think might be right and try to stay open-minded enough not to miss warning signs that I'm wrong.  It's exhausting.

For most parents, there could be a comforting "it's not as bad as you think" but the possible rock-bottom for me is a lot lower than for most.  I can't rule out that this could be something systemic.  But I also have to keep on trying as if it isn't.

End of the day, I cancelled my plans, curled up in front of the TV and allowed myself to gorge on comfort food.  Not my best shining moment of coping but it was what I needed to get me to the next day, when everyone needs me to be up and functional.

Where Did I Put My Sherlock Holmes Hat?

Last week, Alex had a very bad day.

At school, he had an abrupt meltdown and was aggressive enough that the teacher had to physically restrain him to prevent him from hurting himself and others.  At home, he would not settle into an activity and was constantly grabbing at things he knew he wasn't supposed to have.  And finally, at hockey, he was so frustrated at having to play at a different part of the rink that he just burst into tears and could not be consoled.

It doesn't take the world's greatest detective to figure out something was bothering him.  But it would take a Holmesian level of deduction to figure out what that might be.

Was he going stir-crazy with the frigid weather which has been keeping the kids inside more often than not?  Did he have an upset stomach or some other pain?  Did he not sleep well?  Was it just an off day which manage to cascade into catastrophe?

We'll probably never know.

Sadly, this is just something families with autism (and other special needs) have to deal with.  For typical children, once they reach the age of communication, there are at least some tools to help figure out what's going on.  A typical child might not be able to tell you he or she is going stir-crazy, but could let you know about an upset stomach.  The possibilities are too endless to dismiss: a buzzing light, a particular perfume ... something which he can tolerate 99 times out of a 100 suddenly becomes intolerable. 

His teacher called me to let me know what had happened and I believe she made the right call.  It drives home why Alex might not ever be integrated into a typical classroom.  He might do very well most of the time, but they could not deal with this kind of eruption.  And once a pattern was established, he wouldn't have any qualms about using it to get out of demands.  Which is precisely why he was pulled out of his integrated grade 2 class and put into the segregated system.

It's a reality check to keep expectations on a short-term level.  We are not anywhere close to being able to daydream about integration.