Sunday, 30 November 2014

CHEO Visit and Dog Update

Life happens and sometimes there's nothing you can do about it.

Last week we were supposed to meet with the representative from National Service Dogs.  Unfortunately, I ended up at CHEO with Nathan, worried about possible appendicitis.  Dave and Alex were here and they said the interview went well.

They brought a dog with them and Alex was nervous but intrigued.  They saw Dave using the clicker to track Alex's demands, which reassured them that we would maintain the dog's training.  And they asked us if we would be willing to rehome the cats if it came to a conflict with the dog.  (That's a very difficult question as the cats are very elderly and neither of us like the idea of kicking them out of the only home they've ever known.)

Nathan did not have appendicitis but he's been fighting one bug after another since we got back from CHEO.  Vomiting, earaches, sore throat, it's like a germ cornucopia.  It's why I haven't been updating the blog lately.

I'm nervous about having missed the interview, particularly when they said they needed to speak to both parents.  But at the same time, I was at the emergency room with my child.  If that doesn't count as a valid exception, I don't know what would.  (Car accident?  Being kidnapped by a drug lord?)  I called her the next morning on her cell and she said she would call me back later that day but she didn't.  I've sent an email telling her that I'm happy to do a phone interview if they have questions for me.

One crucial bit of information is that we haven't been approved yet.  Therefore our two year wait has not yet begun.  Dave got the impression they were recommending us for approval but it's not solely their decision. 

Right now I'm too tired to think about the implications of that.  I want to focus on getting Nathan better, getting my work done, getting my book out and preparing for the holidays.  Everything else can take a backseat for a little while.

Wednesday, 26 November 2014

Step Back For Toileting

We thought we had our younger son's toileting under control but over the last four months, he's gone from an accident once a month to every couple of days.  Mostly when he's sitting in front of the computer.

Our behavioural therapist told us that by giving him the iPad to watch while he was on the toilet, we've likely linked watching a screen and using the bathroom.  She recommended getting rid of the iPad and starting over.  Especially since he's territorial about the computer and won't let it go to use the bathroom, even if his brother isn't there to claim it.

So we're going back to basics.  No iPad in the bathroom and no books either.  (She recommended a completely distraction free environment.)  If he wants to use the computer, he has to spend 1 minute on the toilet first (we'll increase that to 2-3 minutes later).  While he's using the computer, check every 5 minutes for clean pants (another suggestion from the behaviour therapist, focus on achieving the positive rather than avoiding the negative).  If he's clean, he gets a treat.  If he does a BM in the toilet, he gets a big reward.  (I'm leaving the reward as a surprise, his curiousity should help us.)

Hopefully this will work once and for all.  It would be nice to be able to rely on at least one of the kids to use the toilet when necessary without adult supervision and direction.

Tuesday, 25 November 2014

Doing the Math for Laundry And Bedwetting

My husband finds math reassuring because the numbers never lie.

I find it frustrating for the exact same reason.

Of late, I've been having a real challenge keeping up with laundry in our house.  It feels like I'm constantly running behind.  Wondering if I was being too hard on myself, I did the math.

We have 4 duvets in service for the winter, to be used for both boys.  Our washer fits 1 duvet at a time.  It takes 70 minutes to wash and 120 minutes to dry.  (Or at least dry enough that I can hang it over the stairs and let it air dry the rest of the way.)

Alex wets the bed at least once and sometimes twice per night.  At least twice a week, we will also have to wash Nathan's duvet. 

Here comes the math: 3 duvets to wash = 6 hours of dryer time, assuming I'm prompt and can change the loads as soon as they finish.

I need to do a load of the boys' clothes every other day, add one more wash and dry cycle.

I have to do Dave and my clothes at least once per week, another wash and dry cycle.

And then there are assorted towels, our bedsheets, emergency washes, delicate items.  On average, I need between 6 and 8 hours each day to do laundry.  A lot, but not impossible.

Until you factor in the part where Alex cannot tolerate the noise of the dryer motor and finds the beeping buttons on the washer irresistible.  He will stop the washer mid-cycle which means starting over from the beginning.  (Our washer does not indicate where a load was stopped and since I don't always catch him in the act, I get a surprise when I go to switch over the loads.)

Alex is away at school for 3 hours.  Which is one dryer load.  Our only other opportunity is after he goes to bed, which gives us another dryer cycle.  Which is why I've been having to haul out a chair and sit in the hall in front of the washer and dryer.  Usually listening to him throw tantrum after tantrum at not being able to turn them off.  And I'd better hope I don't have to go to the bathroom during the 2 hour cycle because he will be there the second I'm not at my post.

Our washer and dryer are off the main hallway in an alcove.  No door to lock, only a curtain.

This is incredibly frustrating for me.  Doubly so since Alex is the one creating most of the laundry and preventing it from being washed.  And he has zero comprehension of the impact of his actions.  The beeps are rewarding so it doesn't matter what punishment I offer, he's already gotten what he wanted.  The motor noise is intolerable no matter what rewards I offer.

I've gotten offers to use other people's machines but the act of having to haul dripping soiled clothes and duvets to someone else is both gross and adds too much time to the process.  The only somewhat workable solution is to stay up late to maximize the bedtime laundry opportunities.  And make sure Alex is out of the house on weekends to give us a fighting chance.

Monday, 24 November 2014

Sleepover at the Museum

This weekend was the annual white-tail Beaver sleepover at the Museum of History.  With much sadness, I must report that Ben Stiller's documentary "Night at the Museum" has proven false as a roadmap.  Not a single exhibit came to life.  Oh well.

It was still a good time.  There was a talk on the fur trade and half the kids got to be natives and the other half were the Europeans.  They negotiated their own fur trade and the natives (which included Nathan) did pretty well, negotiating some pretty tough deals for metal goods like a bucket, axehead and fire kit, as well as some beads and metal brooches. 

After a rather spectacular example of free market trading, the kids each got a drum and participated in telling a Nigerian folk tale about a little caterpillar who wanted some sleep and pretended to be a monster, scaring the other animals.

We got to see the IMAX film, Galapagos, which was pretty cool.  (I love nature films so I was having a blast even though my 3D glasses didn't quite focus.)

Nathan did incredibly well.  He paid attention, he participated and he was well behaved. 

At least until morning.

My little dude did not sleep at all through the night.  He was incredibly quiet but every time I woke up, his eyes were wide open and staring at the ceiling.  And another mom near us noticed the same thing whenever she woke up.

The night was a short one anyway with campfire finishing after 11 and lights back on at 6.  He was quite upset in the morning and had a lot of trouble getting himself ready.  I decided to bow out on the morning activities and bring him home early.

He made it through most of the day but by 5pm, his little eyes were closing and I insisted on an absurdly early bedtime.  That sparked a tantrum (mostly expected) but by 6, he had calmed down and was tucked in bed.  Usually I leave my kids alone to work through their tantrums.  It saves emotional wear and tear on both of us and discourages tantrums for attention.  Once they've calmed down, I go back and offer negotiations to get what they want. 

This time I stayed with Nathan and held him until he calmed down (although I suspect I lost some hearing from shrieks).  I talked about how I sometimes had to go to bed super early after a sleepover when I was a little girl.  I talked about how proud I was of him for behaving so well.  I explained the theory of evolution (since we'd seen the Galapagos film).  Anything I could think of to distract him and get him thinking instead of reacting.  For the record, the theory of evolution worked.  The simple tale of a young man named Charles Darwin who spent a lot of time thinking about why animals looked different from each other.  I used the example from Origin of Species of different types of finches on the Galapagos (although it's been a really long time since I read that book and so I may have gotten some details oversimplified.)

After my discourse on why Galapagos finches have different beaks suited to their prey, Nathan was calmed down enough to get into his pajamas, have a story and his bedtime song.  And my parents worried my degree in Humanities would never actually be of any practical use.  Showed them.

Sunday, 23 November 2014

Moving Ahead For Our Service Dog

It looks like we're moving ahead with our next step in our application for Alex's service dog.  They'll be coming by for a home visit this week.

We're having a little bit of a "high school study date" reaction.  We want to look like ourselves but the nicest, tidiest version thereof.  But not obviously tidied so that they wonder what we're hiding.

I'm excited about moving forward and a little nervous about putting myself out there to be judged.  I keep telling myself they're probably just wanting to confirm that the house is large enough to accommodate the dog and that we're not obvious psychos.  I know I'm working myself up over nothing.

But I think I'll go straighten up the bookshelves, just in case.

Friday, 21 November 2014

Parent Teacher Results Are In

For the first time we met with the boys' teachers and weren't given a massive to-do list.  They're both actually doing relatively well.  There's still stuff to work on but not an overwhelming amount.

Alex's teachers are really pleased with his compliance levels and his ability to regulate himself under stress.  Apparently there's another child who has developed an obsession with Alex and wants to follow him around all the time, which bothers Alex.  The teachers have taught him to say "I want to play alone" and then get a teacher if it doesn't work.  And they've observed him doing both independently, without any prompting.

Alex is doing well enough that they are starting to think about partial integration options.  He's not ready yet but they think it might be possible for him to join the choir for the spring play or possibly join a math class with his neurotypical peers.  It's a small step but a huge one, if it ends up happening.  If he can tolerate a busier and more distracting environment, that would speak well to his ability to function in the general world as an adult.

Nathan is also improving.  The teacher said it's been about a month since she saw a tantrum.  He still gets upset and angry sometimes but he's not screaming or hitting people, which I will take as a win.  Apparently she has to watch him to make sure he's not sneaking books during work time.  But he's taking her correction with good grace.

For Alex, we'll continue to work on coping strategies, impulse control and toileting.  The latter is a big barrier for any kind of integration.  For Nathan, we're going to start teaching him to type since he still has an extraordinary amount of trouble forming his words and letters with a pencil or pen.  The teacher is fine with him typing his homework (I guess she trusts us not to be doing it for him).

I'm really encouraged, which I frankly needed with the cold weather and all the difficulties recently.

Thursday, 20 November 2014

New Compliance Program for Alex

One of the goals we're working on with Alex's behaviour program is having him follow directions without whining about it.  A lot of the time he will do what we ask but he's complaining at top volume while he's doing it.  At first, we accepted it, telling ourselves that at least he was doing what we were asking.  But as he gets older, we realized it would be less and less acceptable.  Bosses, for example, tend to react badly if you whine and complain about what they've asked you to do, even if you do the task perfectly.

Our first foray at this was to have set times during the day where he had to listen and follow directions without complaining in order to earn his screen time.  We chose instruction-heavy points in the day: breakfast, after school and dinner-time.

However, after five months, he's really not showing any sign of connecting earning the screentime with not complaining and following directions.  So our behaviour therapist came up with a new plan.  Now we have a clicker and every time he follows ten directions without complaining, he earns screen time.

Sadly, part of the idea for this came from a documentary on how they train cats and dogs to do stunts and tricks for movies and TV.  The trainer has a spoon with a treat as well as a clicking device.  When the animal does what the trainer wants, he clicks the device rapidly and then gives the animal its treat.  The animal learns that it's doing the right thing when it hears the clicks and that it's earning a treat.  We've discovered there are a lot of similarities between teaching someone with autism and animal training, which I suppose makes sense.  In both cases, the understanding of complex social nuances is missing.

Now Alex gets an audible click when he's doing what we've asked and he can look at the counter to see how close he is to getting his reward.  If he whines, we tell him "no click" and can show him the counter is staying the same.  It's a clear, unmistakable audio signal as well as a visual one, which should help him to connect the dots.

Luckily, I don't have to train him to play the piano, jump through a hoop or tolerate Tom Cruise.  Just keep his inner monologue on the "private" setting.

Wednesday, 19 November 2014

Well Begun and Half Done

Well, I did manage to get my editing done before my deadline.  There's still some trimming and polishing to do but I have another 3 weeks to do that.

It's been a hectic week between a visit to the trampoline park, work, parent-teacher interviews, doctor appointments and just trying to get everything done.  I'm more than a little wiped out with trying to keep up with it all.

But I remind myself that I am making progress.  And that means a lot.

Thursday, 13 November 2014

Got to Hunker Down and Get My Work Done

For once, this has nothing to do with autism and parenting but it is still work I need to focus on. 

I'm looking at publishing a novel in January (check out www.pastthemirror.com for more details).  I need to get the manuscript ready for line editing soon, which means I need to have it done by Monday.

Unfortunately, that means I probably won't have time to post between now and then.  I hope everyone can understand.

Tuesday, 11 November 2014

Being A Less Competitive Mom

I've been re-reading Maternal Desire and the chapter on maternal competition struck me.  I first read this book just after Nathan was born and it spoke to me greatly.  The thought that women might actually want and choose to be primarily mothers is a foreign one in our society.  It's generally assumed that stay-at-home moms are bored, working beneath their skill levels or desperate to get out.  Particularly if their children are under 4 years old.

Now I find there are large portions of it which don't feel as if they apply anymore.  Some of them have to do with neurotypical development which never happened with my children but the biggest one was about maternal competition, the subtle jockeying of bragging and the inherent belief that one's children are the best, brightest and most beautiful creatures ever to walk the face of the earth.

I love my kids but I wouldn't describe them with a  superlative.  I couldn't.  I see more advanced children all the time.  I put in more work to achieve fewer results.  They are good-looking, it's true, but that's not really the hook I'm looking to hang my hat from.  I don't even see myself as a particularly exceptional mom on either the neurotypical or special-needs side of the fence.  I think I'm actually fairly average.

Maybe it's the knowledge that I can't possibly win which has led me to withdraw from competition.  Maybe it's the hurt which I still feel when I see a two year old chattering about his or her day to their parent.  I cannot avoid the realization that by all normative standards, I am a failure.  It's doubtful whether my children will be able to attend university, the pinnacle of parental success.  It's almost certain that Alex will need lifelong support and care. 

But in letting go of the competition, I can also let go of those goals and see they are not as important as I once thought they were.  We had a joke when we named Alex that we chose his name so as to sound appropriate to great things: Alexander George Mackintosh was elected to his fourth majority as Prime Minister vs escaped serial killer Alexander George Mackintosh is still at large. 

Neither of those is going to happen.  Likely Alexander George Mackintosh will have a low-level menial job where he can have minimal interaction with the public.  And he'll be happy.  If he can be happy and contributing to society in even a minimal way, then I will count myself as a success.  I know there will be many who won't see it that way. 

I already see the pity in a lot of eyes when I acknowledge where we are.  People like success stories, triumph against the odds.  Only, if everyone triumphs, then those weren't really the odds in the first place.

I can't spend my time chasing dreams or mourning them.  I have to focus on what is actually happening and how to make the best opportunities out of it. 

Remembrance Day

My thanks to all of those who have sacrificed their health and lives in order to protect others. 

Monday, 10 November 2014

A Success for Toileting

We had our first success with Alex's toileting program.  For the first time, we were actually able to confirm that he did a BM in the toilet (as opposed to having done one earlier which simply dropped in when he sat down). 

Needless to say there was much rejoicing and he earned a special visit to the trampoline park. 

Our behaviour therapist was quick to reassure us that the trampoline visits would be a short term reward.  She understood they took a lot of time and money.  I don't think she gets how desperate we are to have him toilet-trained.  If it means spending $30 every day to take him, I will do that.

Granted, my more logical brain reminds me that we will go broke doing that but the emotional side doesn't care. 

Sunday, 9 November 2014

More Work On Practice Tantrums

We've now done two practice tantrums and I can see why it was recommended not to do them too frequently.  It's hard to work your child up to a point of actual upset (and otherwise they're not learning to control when they have strong emotions).  It goes against every instinct as a parent.

Nathan always gets lots of cuddles when he's done.  And I make sure there's a wide amount of time before he'll have to do anything.

We haven't had any further incidents of hitting reported from school.  We had one incident here, which was promptly given a time-out and loss of screen time. 

I've told Nathan that I don't like doing the practices, that I don't like seeing him upset.  But I am proud that he's learning to control his temper and I know how hard that is.  Hopefully the lesson will be learned quickly and I won't have to do it for long.

Friday, 7 November 2014

Nathan Quote

Nathan has been very proud, showing off his new glasses to everyone.  One of the therapists commented that they made him look older.

Nathan: I look old?

Therapist (looking nervous): Not old-

Nathan (delighted): I'm an old man.  A grumpy old man!  Just like Daddy!

Thursday, 6 November 2014

No Trip for Alex

Alex likes travelling, so when my parents offered to take him with them to Toronto this weekend, we were cautiously optimistic.  He would enjoy the trip and we'd have some time to focus on Nathan.

Unfortunately, it's not going to happen.

Alex has been having a really difficult week.  Enough complaining to qualify for Parliament.  Extremely long time outs.  Whining constantly.  That's three strikes.

Although we could certainly use the break, we have to think long term.  Disney cost us almost three weeks of re-establishing the rules.  A weekend away, especially when he's already being difficult, could be another week or two.  It's not worth it.

This is something which is often overlooked in respite programs.  A break is all and well and good.  It's necessary.  But sometimes the cost is higher than the benefit, which is why parents don't immediately jump all over these programs when they're offered. 

Sometimes it's being unable to find childcare to give you that break.  Sometimes it's knowing that even that small disruption of routine will cost you.

It takes me about two months of regular visits to train someone to the point I can trust them to manage the boys at home without me.  (Longer if there are any excursions, even outside to the backyard.)  That's two months of paying someone to come for several hours at a time, at least once per week.  That's a lot of investment before I get even a minute of actual respite.  So I understand how some parents are just too exhausted to do it.

I'm lucky at this point.  I have two aides I can ask to come and help as well as my parents.  But I know that at some point I will have to start the process over.  Teens and young adults are a high turnover crowd.  And respite is not something that anyone wants to do as their full time job.

Wednesday, 5 November 2014

I Can See Clearly Now

We got a surprise this week at the optometrist: Nathan needs glasses.

He has very mild nearsightedness.  Enough to need glasses for classwork but not for all the time. 

I knew this was coming.  After all, I was so nearsighted I counted as legally blind before I had laser eye surgery.  And Dave has worn glasses since he was 11.  But both of us started losing our eyesight around puberty, so I thought we likely had until then with the boys.

Nathan is quite excited about having glasses (which is a relief because if he hated them, he'd never wear them).  I'm a little nervous, since he's not the poster child for responsibility (and if he was, I'd worry more).  Hopefully his teacher will gently remind him to bring his glasses home at night.

It's made me wonder about Alex's eyes but the optometrist at CHEO has been clear about the difficulties.  He can't tell us which of two images is clearer, let alone sit through the five to ten minute process of minute adjustments to create a prescription.  Unless we see some really big signs of myopia, he'll just have to muddle through.  I take comfort from the fact that he can still read the bus numbers from well beyond my ability to do so.

Tuesday, 4 November 2014

Halloween Photos

Took some doing, but eventually we extracted the photos from the camera.  (And gave me a reminder why I should sit down and label all of the various data cords we have stored in boxes.)

 
 
Alex's Queen Elsa costume came together nicely despite being last minute and store bought.  I got him two blonde wigs and then sewed them together (along with the tiara) so that he had a nice thick braid to pull over his shoulder.
 
We got plenty of comments about his costume.  We took him to his school's Hallowe'en party and a good dozen teachers and staff stopped by to see him.  One of the school staff commented that they thought it was just great how we went for whatever Alex wanted, regardless of social pressure.
 
The attention left me with mixed feelings.  On the one hand: pride, since I think the costume did turn out amazingly well.  But on the other hand, a little unsettled, feeling like an oddity.  But Alex enjoyed it all, which was the point.


Nathan's Emmet costume is the one I'm particularly proud of.  I made it out of craft foam and used multicoloured duct tape to create the designs.  The Piece of Resistance on the back is two Kleenex boxes covered in red foam and I used yellow foam to make the hands.  I think it turned out awesome.

Compare with the original:




 


 

Sunday, 2 November 2014

Technical Difficulty for Hallowe'en Photos

We have some very lovely photos of the boys in their Hallowe'en costumes but I can't find the cable to get them off of the <insert profanity here> camera.

It's late and I'm not feeling great, so I'm going to deal with this tomorrow.

Sorry about the delay.