Gearing Up for Prose in the Park

I'm starting to feel a little overwhelmed and crazy as I get myself together for this year's Prose in the Park event.  It's on Saturday, June 4th from 11 to 6 at Parkdale Park (near Parkdale and Wellington).  It's a festival featuring local Ottawa writers and I'm going to be there with my books. (Paranormal romance, www.jclewis.ca for those interested in checking them out.)

Building a writing career is like building any small business.  It takes awhile to get going but so far, I'm encouraged by the feedback I've gotten.  Sometimes I think I'm crazy for even trying but if I can make writing work as a career, it would be the best possible outcome for me.  I enjoy it, the hours are flexible (allowing me to deal with my life's challenges as needed) and I can potentially go on earning income even after I die (which would then go to the boys to support them).

Post Camp Sick Day

Nathan had a great time at Cub camp.  According to his grandfather, he participated and there were only a few meltdowns.  He stayed for the whole day, getting there for just after 8 am and coming come at 11.  It was a long day full of fun, sun and running about.

Thus it is not a surprise to be reaping some consequences.  When he got home, he began to complain that his tummy was hurting.  He didn't want to eat, he didn't want to walk anywhere and he was just plain exhausted.  I ended up leaving my cousin's baby shower on Sunday since his tummy was upset.

Today, his throat is sore and he's coughing and running a fever.  So he'll be staying home to recover for awhile.  I'm hoping that a day of rest and fluids will help him to heal.

Perhaps this makes me a bad mother, but I still feel that the day of camp is worth it.  Even if he's sick for a day or two.  It's a great opportunity to socialize and be part of the group and it's real progress for him to participate.

Fights between Friends

Yesterday, Nathan had to leave a playdate early because he and his friend had a large fight.  They managed to both hurt each other's feelings quite badly and the mom asked me to come over to help resolve it before sending Nathan home.

Nathan was incredibly disappointed.  He doesn't have many friends and was devastated when this child said they didn't want to be his friend anymore (they were just upset and didn't mean it, but it still struck home).  Add in cancelling the playdate and he was certain he'd just lost one of his friends, no matter what I said.

I think I got it sorted out.  We talked about how feelings can get hurt and how everyone has extra sensitive spots.  For Nathan, that's being alone.  We roleplayed other ways that Nathan could have dealt with the initial conflict without hurting his friend's feelings.  We went over the rules for fighting (no yelling, no name-calling, no hitting).  We talked over ways that he could deal with his feelings being hurt (That hurt my feelings.  I need a break.)

We've got the playdate rescheduled for next week.  Hopefully it goes smoother.  

Return of Bolting

A problem we thought we had dealt with has returned.  Alex has begun bolting again (by which I mean that he will walk away from the house or school or from us when we're out).  I'm not sure what triggered this, but he's tried twice to walk home from school and three time to simply leave the house.  All in the last week.

We're going to have to increase our vigilance when we go out and go back to, no trips unless we have one-on-one attention on Alex.  Dave suggested using Nathan as an alarm, but I'm not quite prepared to go there.  (For one, I can see Nathan shouting out as soon as Alex moves one step and then requiring my full attention while Alex slips off.)

I am now really hoping that we get the service dog for the fall.  This is one of the big reasons we wanted the dog in first place.  Since we keep coming back to the same issue over and over, I suspect this is not something we can ever eliminate behaviourally.  We will always need to have precautions in place to deal with it.

First Window Hang of the Season

Alex isn't limited by normal boundaries, like gravity.  He likes to climb out of his second story window, which is why his window has been adjusted so that it only opens a few inches now (because his room needs the airflow, we can't seal the window entirely).

Every year, various neighbours stop by our home to let us know that Alex's leg is dangling out his window.  We usually get 4-6 visits throughout the summer.  Last night was the first one for this year.

It's frustrating and a little frightening.  And it's really difficult to manage behaviourally.  Once he's got his leg out the window, he's achieved what he wants.  All we can do is tack negative consequences on it, so that it's not worth it.  So when he takes the screen out of the window, he loses toys for the evening.  But as the evidence shows, that's not always enough.

Alex has no sense of personal safety when he wants something.  He'll run across the street without checking for traffic.  He'll walk away from school or home without an adult.  I've caught him trying to balance on any number of balconies (the 6th floor of the Museum of Nature remains his most terrifying attempt).  The concept of "you could get hurt and are freaking people out" is too complex to convey to him, so we have to stick with "don't do this or you'll get in trouble" which we all know really translates to "don't get caught."

These are the sorts of things which exhaust parents of special needs kids.  It doesn't happen often enough to have automatic responses in place and be a part of the routine.  We have to be vigilant for long periods of time where it's not happening and then still be prepared to act quickly once it does.  Humans aren't very good at that (attention-fatigue is one of the biggest challenges for guards, soldiers and police officers).  

We'll just have to keep on as we're doing and hope it doesn't get any worse.

Medication Evaluation

When we got Alex's prescription renewed, the doctor suggested that we give him 5 mls per day on a regular basis and then 6 mls per day during times of stress and transition (holidays, big events, etc.) but not for more than 6 weeks at a time.

We began giving him 6 mls in late April, to balance out the schedule disruption caused by rehearsals and the school play, and then kept him on through the hectic days of birthday season.  Now things have calmed down a bit and we're going back to 5 mls before increasing it again to manage the end of year transition.

It hasn't quite been a perfect success but if my memory isn't failing me, this has still been a better "high stress" period than we usually get.  Alex has been having trouble with bolting and sneaking things again, but we haven't gotten the aggressive upswing we usually got with stressful times.

Perhaps that's because the behavioural work has finally managed to convince him that aggression is not a useful tool, or maybe the medication allows him to keep his temper better (or the most likely, a combination of both).  Either way, that's an improvement.

CHEO and OCTC to join

The government has been talking about reducing bureaucracy and allowing greater sharing between organizations so that parents of children with disabilities don't have to spend as much time dealing with paperwork and ensuring that each professional is kept up to date.

The Children's Hospital of Eastern Ontario and the Ottawa Children's Treatment Centre have announced plans to amalgamate.

CHEO president, Alex Munter, promises "We're going to make information easier to share between health professionals, care plans easier, wait times shorter, fewer assessments and quicker treatments."

While I applaud the goal, I'm concerned about how they plan to achieve this.  From what I've been told by parents, OCTC is currently directing their intakes to private clinics, as the delay in getting diagnosed can potentially mean a child will age out of the system without receiving treatment (2 years to diagnosis, 2 years to treatment, treatment cut off at age 5, the math is simple).

Previously, when seeking to cut down waitlists, the solution has been to deny services, not increase them to match the actual need in the community.

Maybe they have a better plan in place this time, but I'm not optimistic.  If there had been a budget increase, I'm betting it would have been included.  And despite the claims, the problem is not bureaucratic inefficiency (although that does exist).  The problem is that too many people need these services and there are too few providers being offered by the government.

Nathan at Comiccon

This year, Nathan joined me for part of the day at Comiccon.  We went early in the morning before general admission, so it wasn't too crowded for him.

He dressed up as Han Solo.

He posed with Hawkeye and Hulkbuster

He drove the Delorean from Back to the Future

Met R5-D4

Shot the Empire soldier

Fought Kylo Ren

Took command of the TARDIS

With some help with his Dalek friends

Though the friendship soured...

He went back to the Star Wars people and rode a speeder with Darth Vader and BB-8

But got put in jail.

He made courageous escape

But was eventually recaptured.

Birthday Photos

As promised, now that we have our computer working again, here are some pictures from the boys' birthdays.

Nathan and his post-supper birthday cake.

The awesome BB-8 cake.

Nathan blowing out the candles.

Nathan and his friends at the trampoline park.  Much bouncing and fun.

Alex starts his birthday off with new LEGO.

And a McDonald's ice cream.

Then on to tour elevators at school.

And CHEO.

And the special elevator at CHEO.

And having a lunch at A&W with Daddy and Rosita.

Technical Difficulties

Sorry for the online silence of late.  We've been having some technical difficulties with our computer and real-life difficulties with the boys, which has really cut into my blogging time in the morning.

It looks like we've finally fixed the "no pictures" problem on the blog, so I'm hoping to have pictures from the boys' birthdays and Nathan's weekend at Comiccon up soon.

Alex's Birthday Elevator Tour and the reality of being out in public

I want to start and finish by emphasizing that Alex had a great time on his birthday tour of Ottawa's elevators.  He got to start with some McDonald's ice cream, then we stopped by school for the graduation photo and then we went to Cosmic Adventures.

At Cosmic, we got to deal with a very frustrating reality of being out in public with Alex.  Namely, aggressive parents who feel the need to attack him to correct his "poor discipline".  We left Cosmic after a parent began shouting at him and then turned on me to say that Alex shouldn't be out with "normal" people.

Not the first time.  Probably won't be the last.  It's exhausting and frustrating and certainly took most of the enjoyment out of the day for me.  I'm not sure what happened as I heard shouting and went to investigate to find Alex at the center of it.  We'd gone early so that there would be fewer children, but not early enough, I suppose.

I hate dealing with this type of thing.  And I hate the emotional drain of having to be constantly on guard for it, waiting for it to happen.

I refuse to segregate ourselves and keep Alex out of the public, but then things like this happen and I find myself wondering if it's really worth it.  I doubt we'll be going back to Cosmic again.  This is the third incident we've had there with other parents and I don't think it's worth it.  It's too hard to keep track of Alex in the maze.

We finished the day with a visit to the CHEO elevators, A&W and an OC Transpo bus ride (Alex even got a double decker).  

Alex was cranky and tired and oppositional by the the end of the day, but after a big day, that's to be expected.  He had a good time and, other than a brief period, it was what a birthday should be.

Next Year Revealed for Alex

Yesterday we had Alex's IPRC meeting (Identification, Placement and Review Committee, the group (including parents) who decide what supports Alex needs at school).  And, as part of that, we found out where he is going to be going to school next year.

He has been at the autism program in his current school for the past three years and they've done a wonderful job with him.  If the school went past grade 6, I'd have been happy to have him continue, but it is time for him to "graduate" to middle school.  It's been reassuring knowing where he's going to be.

We had been hoping that a second autism class would open at a nearby middle school and that Alex would be able to attend.  We've only gotten part of that wish.  The second autism class is opening but they don't have enough room for all of Alex's class.  Instead, he will be going to another school which is further away.

The teacher explained that she's recommended Alex go to this program for several reasons.  First, she thinks the children in this new class will be closer to his level, developmentally and intellectually, than the children at the program near us.  This new school's autism program places a high emphasis on learning, using and understanding technology, which is right up Alex's alley.  Second, she warned about a personality conflict with one of the other children who is already at the middle school near us.  When that child and Alex were in the same class before, there were a lot of behavioural challenges between the two of them.  So she wouldn't recommend they end up in the same class again.

We will still have a "Bring Home" agreement where Alex will be the first one offered any spots which open up near us.  However, from the sound of it, the new program may be one which is better suited to him, which may be worth him needing a longer time in transit.  (We'll have to see just how long that transit actually is before making that decision.)

There's also the question of transitions.  The middle school near us only offers grade 7 and 8 and then Alex would be transferred to the high school.  If he has to switch schools at the end of grade 6, then again at some point within or after grade 7 and then again after grade 8, that's a lot of disruption.  The new program offers grades 7, 8 and 9, transferring to high school in grade 10, so it would offer more consistency, if the program is working out.

We've agreed to the plan as is and, although it makes me nervous, we'll find out how everything is working out in the fall.  I will get a chance to visit the new program with Alex's teacher before school ends and Alex will also be taken to see his new school and meet his new classmates and teachers.

It's not what we expected, but life has taught me not to get too attached to my expectations.  Sometimes the unexpected turns out to be far better than what we had initially planned.

Nathan's Birthday Party

I'm experiencing some technical difficulties so I can't post pictures right now.  But Nathan had a great birthday party at the Xtreme Trampoline Park.  The staff were very friendly and supportive (and patient with shouting out multiple reminders not to run on the trampolines).

He and his friends had an hour of bouncing around on the trampolines and jumping on the crash pad and then came back to the party room for pizza and cake.  Nathan had requested a BB-8 cake (the new round droid from Star Wars) and his Memee found someone who put together a wonderful one.

Instead of loot bags, we gave each of the kids a light saber, which was very eagerly received.

Nathan and his friends are growing up.  It's not like when he was 4 or 5 and they needed constant supervision.  Now they can manage and entertain themselves under a more distant (but still watchful) eye.  It was great seeing him joke and play around with his friends, picking up and participating in spontaneous games.  Everyone seemed to have fun and we didn't have any outbreaks of tears.

Nathan is making some great progress and I'm very proud of him.

Summer Respite Funding Open for Applications

Autism Ontario has opened the applications for their summer respite funding.  Generally each grant is a few hundred dollars and it can be applied to any program your child is enrolled in during the summer (even regular therapy or babysitting).

You have to submit proof of diagnosis with your first application, but after that, Autism Ontario will keep the diagnosis on file, which makes applying easier.

Once applications are closed, Autism Ontario sends out notices letting everyone know whether or not you've been approved.  If you haven't been approved, it's still a good idea to keep your receipts from your program.  I've had a number of years where I get a notice in September that extra funding has opened up and if I can submit a receipt within the next few weeks, I will get it reimbursed.

What Do You Mean, Kids With Autism Don't Have Friends?

This week a parent passed on a message which really surprised me.  She'd been speaking to different groups about treatment options for her child with autism and one of them told her not to get her expectations up too much, that even if her child received treatment, he would always be different and wouldn't have friends.

Excuse me?

Immediate launch of the defensive mom on my part.  I explained that while, yes, kids with autism are usually still different, that doesn't preclude them having friends.  It takes more effort and they will likely require some specialized coaching (as well as prompting the friends to understand) but that doesn't mean friendship is impossible.

Alex has a number of friends, despite being relatively severe on the autism spectrum.  Granted, those friendships may not be what I would look for, but he has a classmate who shares his love of OC Transpo and they spend hours reciting bus schedules at each other.  They're having fun and I see it as the equivalent of two kids discussing Skylanders or Pokemon.  It's a mutual interest.

Nathan has a harder time with friendships, as most of his friends are neurotypical.  I have to prompt him about what is appropriate behaviour with a friend (curling up to read a book while a friend is on a playdate, not appropriate, building Lego together, appropriate).  But he is learning and enjoys spending time with his friends.

I do know a few kids on the spectrum who are completely uninterested in social interaction, but they are also incredibly happy being on their own.  There's a huge range and while it may take time to see where any particular child is, there are options.

Break A Leg, Mr Alex

Today, Mr. Alex will be making his stage debut in the school play, We Are Monsters.

He's part of the chorus and has been practicing in the rehearsals.  Despite a lot of "no play", his teachers tell us that he's been enjoying the process.

It's great to see him participating in these sorts of things.

Alex's Trip to Montreal with Mommy

To my surprise, Alex decided that I could take him to Montreal for his toileting-reward trip this weekend instead of waiting for Memee and Avi.  (Lately, I've been bottom of his list for rewards.  He'll go with Daddy, or his grandparents or Kaitlin, but he doesn't want to go with me.)

I was a little worried.  He has a tendency to push the boundaries of acceptable behaviour when he's with me, so sometimes when I'm trying to have a pleasant time with him, it seems like I end up having to constantly correct him.  I didn't want this trip to be like that, as this is the big reward which is helping us to push forward for toileting.

But it turned out to be a pleasant day.  We arrived early to the train station but Alex behaved himself very well during the wait and on the train up to Montreal.  He led me through the Eaton Centre and got A&W for lunch, then a tour of the escalators and elevators.  Then we rode the Metro for half an hour, then more escalators and elevators and back on the train.  

I did have to frequently remind him to stay with me, hand in hand, rather than wandering off or ahead.  And we did have difficulty when we needed to make a half hour stop on the way back (I guess the train was running ahead of schedule).  Alex was bored and ready to go home, so he started acting up and needed to be reminded that if he didn't behave, he wouldn't have screen time when he got home.

We're doing a longer "word" this time: Go To Montreal, 12 letters.  Partly because birthday season is coming up and he's going to have a lot of fun happening and has a lot of commitments on the weekends.  And partly because we want to push him for more success.