Monday, 31 March 2014

Set Your PVRs to TVO: Autism Grows Up (Wednesday)

On Wednesday, April 2nd at 9, TVO is showing a documentary Autism Grows Up.

It looks at the job opportunities in Canada which are available to people with autism. 

This is one I'll definitely be looking at (although it might take me a few weeks to actually get time to sit down and watch it since I'd like to absorb more than one word in five, which means not watching at the end of the night when I'm exhausted).  It's something I've begun to think about as Alex gets older.

After all, most of the traditional feeder jobs (food service and retail) require good people skills, which makes them more challenging to people with autism.  However, many of them can excel at tasks which require high levels of precision, repetition and a large database of knowledge.  But they can suck at traditionally formatted job interviews.

For someone to be independent, they need a good source of reliable income.  For the non-independently wealthy, that means a job.  I'll be very curious to see what this program says.

I'm a little concerned by the description which claims "Tens of thousands of young adults with Autism Spectrum Disorder are looking for work in Canada - and over a hundred thousand more are on their way.  Are we ready?"  This strikes me as somewhat alarmist and I'm not interested in doomsday scenarios.  However, I'm hoping it's just hyperbole to get people watching.

Sunday, 30 March 2014

2 Studies: Why Autism is More Prevalent in Boy and Siblings of Children With Autism

Initially I was going to do this as two posts but decided I would combine them.

I found two studies on autism this week on the Sensory Spectrum.

The first was a study on why autism is more prevalent in boys than girls.

Sebastien Jacquemont at the University Hospital of Lausanne did comparisons of boys and girls diagnosed with autism.  To catch everyone up, boys are diagnosed with autism at a rate of 4 to 1 compared to girls.  And there is significantly lower number of "high-functioning" girls compared to high-functioning boys, so girls who are diagnosed tend to more severe.

There have been a number of suggestions as to why this is.  Do the high-functioning girls get more inadvertent behaviour therapy as girls are often encouraged to pay more attention to other people's feelings anyway?  Do girls actually have some sort of protection by being more statistically empathic?  Are parents and doctors simply more likely to notice a problem in a boy before a girl?

Mr. Jacquemont (he's not identified as a doctor in the article) found that girls who are diagnosed had a "greater number of harmful CNVs than did males diagnosed with the same disorder."  (CNVs are copy-number variants, areas where a particular gene has been miscopied from cell to cell.)  He tells us his findings "suggest the female brain requires more extreme genetic alterations than does the male brain to produce symptoms of ASD."

This does suggest something genetic but doesn't actually address the underlying question.  To do that, he would have to see if he could find girls with low numbers of CNVs (comparable to the low-level boys) and test to see if they qualified for high-functioning autism.  If the girls are out there, but unidentified, then autism isn't really gender specific.  If they aren't out there, then that would be a far more interesting development since it would almost definitively prove a gender-specific weakness and give us a much better understanding of how autism actually develops.  It would also suggest a strong genetic link, which might discredit the environmental folk (who claim vaccines or heavy metals are responsible).

The second was a study on how siblings of children with autism can show atypical development at 12 months.

We participated in such a study (although I don't think this is the same one).  Regular odds for having a child with autism are 1 in 80(ish).  With a sibling with autism, the odds drop to 1 in 20.  And many scientists think the number is low as parents often choose not to have another child after their child is diagnosed with autism.

The article implies that signs can be detected in siblings sooner than they can be detected in a first-born child or one with neuro-typical older siblings.  I'm not sure that is actually the case or if parents and doctors are simply looking closer and notice more subtle signs.  Or perhaps siblings really are showing signs earlier since they have an autistic model for their behaviour in their older sibling.

Either way, I applaud the recommendation that siblings be checked carefully and frequently once a child has been diagnosed with autism.  Parents should be made aware the odds are greater so they can make informed decisions.

Friday, 28 March 2014

Measles in Ottawa

I'm going to hop on my anti-anti-vaxxer soapbox for a moment.

There is currently a measles outbreak in Ottawa.  Without question, the outbreak is the result of people deciding not to have their children immunized with the MMR vaccine.  (Measles, Mumps and Rubella, for those who didn't waste a large number of their formative years watching ER and House.)

In 1998, Andrew Wakefield (I refuse to give him the title doctor), published a study linking the MMR vaccine to autism.  It has since been proven to be a total fraud with hand-picked cases, altered medical records and falsified lab data.  However, a substantial fraction of parents decided not to immunize their children based on it.  This dropped the level of immunization down below the level of herd immunity and people (especially small children) began to be blinded, deafened and killed from measles for the first time in half a century.

Measles is a particularly difficult disease to avoid since the patient is contagious for 3 weeks before displaying any symptoms.  It's very easy to catch if you haven't been immunized, usually only with a single exposure.  People with weakened immune systems, children under 2 and pregnant women are likely to have severe complications. 

An doctor wrote an article in the Globe and Mail talking about how mothers will walk miles across minefields in developing countries in order to get their children vaccinated.  It makes her sad to know that somewhere this year, doctors will have to tell mothers in the Western world that their children died because of an entirely preventable disease.  And likely not because they chose not to vaccinate, but because people around them chose not to.

I recognize that autism can be scary and it's human nature to reach for an easy explanation.  When we have countless examples of companies hiding results to avoid profit loss or "studies" which are really just advertisements for the sponsoring companies, it's hard to know who to trust.

I highly recommend the book The Panic Virus by Seth Mnookin to look at the autism-vaccine question in detail.

Wednesday, 26 March 2014

Visit to the National Art Gallery

I like art.  I think it's valuable and important and I'm glad we have a place where we, as a nation, collect and see it.

I think whoever decided it was a good idea to take a bunch of 6 year olds there was not thinking with the reality side of their brain.

Today was a field trip with Nathan's class.  In all, I have to say it went as well as could be expected.  One minor incident where a kid nearly touched a two hundred year old 2.8 million dollar painting, but was stopped by a parent volunteer.

But the excitement of walking around quietly, keeping their hands to themselves and looking at things was somehow lost on most of the kids, who kept asking when they would get to do stuff.

The guided tour at the start was interesting (at least to me) and kept the kids moving at a fairly good pace.  Then came lunch and the not-so-well-thought-out part: free exploring time.

Rather than exploring, I would have set up paper, paint, pencils, clay, etc. in one of the four cafeteria rooms and let the kids create their own art.  We would have given a lot fewer guards heart attacks and had a lot fewer bored kids.

But that's me.  And we've already established the world would be a far different place if they'd let me run it. 

Tuesday, 25 March 2014

My Bambi Moment

You know the adorable scene in Bambi when the little fawn goes out on the ice and ends up falling with his legs splayed right out?

Picture that but with me instead of the fawn and the adorableness factor turned right down.

On Sunday, Nathan and I were invited to go skating.  Great idea ... except for the fact that I don't have skates.  But I decided this was something I wanted to do and Nathan would need me to go with him.  So I ran out and bought a pair of used skates.

Then I discovered my muscle memory and coordination skills leave a lot to be desired.

Still, I was enjoying myself and starting to get back in the swing of things when Nathan decided he was tired and wanted to go home.

I'm glad I did it.  There are a few more weeks of public ice time before the spring shutdown.  And next year, we can try again, too.

I'm trying to get more active in my day to day life.  I've got my time on the treadmill and I'm going back to karate class.  Occasional skating sounds like a good addition for winter.

Monday, 24 March 2014

Getting My Homework Done

I never wanted to be one of those parents who ends up doing their child's schoolwork for them.  But as Nathan gets deeper into grade one and assignments keep on coming, I find myself struggling a bit with finding the balance of having him be successful and him doing the work.

I know that if I just leave Nathan on his own, the work won't get done or he'll have trouble understanding the concepts of what he's supposed to do.  At a minimum, he needs guidance.  But too much guidance and he'll just be passively accepting what I tell him to do rather than actually learning.  On the other hand, repetition is the key to learning, so surely if I have him do it often enough, he'll pick up the skills and then I can wean him off the instruction.  On the fourth hand (am I on feet at this point?), by helping him, am I creating an artificial impression of skill which could lead his teachers to believe he needs less help than he actually does?  But other parents must also help their children and parent participation is supposed to be one of those defining factors in a child's academic success ...

See why I'm having trouble?

The assignment du jour is a book talk.  This is the third book talk this year but the first in which he has to read a non-fiction book. 

Fun fact about non-fiction books: they have about 10 times the amount of material as a fiction book, even if the books have the same number of pages.  Nathan is supposed to read the entire book three or four times before his presentation.  However, the amount of material makes that difficult.  So I'm introducing a new technique to him: notes.

I'm teaching him to take notes about the key points in the book and we'll review the notes at each session.  At this point, that means I'm pointing out what is and isn't a key fact and using dots to help him write out the sentences in his notebook (since he still has trouble with writing).

I worry I'm subverting the point of the assignment, which is to practice reading.  But Nathan reads quite well.  It's just not a preferred activity.  And taking notes is a useful academic skill.  But is it expecting too much from a Grade 1 student?  Should I have made him pick a more basic non-fiction book? ...

I think I'm going to stop second-guessing myself before I get dizzy.

Sunday, 23 March 2014

Bring on the Mouse!

I've been talking for awhile about setting up a Disneyworld vacation for Alex in the fall but this weekend I took the first irrevocable step: I made our reservations.

At first, I thought we would need a full kitchen, which meant we'd have to go with a villa or cabin (which is hugely expensive) but with Alex doing much better with "typical" food, I think we can get away with just a fridge and a microwave, which our helpful Disney representative says are available in all the hotel rooms.  That means we can do a longer stay.

I've booked us to arrive on the Sunday and depart on Friday (flights haven't yet been dealt with).  That means we're at the park during the week during an off-season time, so it should be relatively quiet.  With Alex, we've always found that he (and we) do better with fewer people.

I chose the All-Star Music Resort since Alex is definitely musical.  All the resorts seem to have similar amenities: transportation to the parks, room service, dining options, a free movie in the evening, a pool and laundry services.  We've reserved a simple room with two double beds.

I got a meal package which included character dining experiences.  Alex likes the classic Disney characters: Mickey, Minnie, Donald, Daisy, Goofy and Pluto.  But he also likes the Disney princesses.  We can reserve our places in advance.  And the Dining Coordinator was kind enough to let me know that the chefs will bring in special food for him.  We can't bring our own food, but they'll make sure they have stuff he likes to eat on hand.  That's a real bonus.

I paid a little extra to get Park Hopper tickets.  Knowing Alex, I suspect we'll hit the park for a few hours in the morning but have to come back for a breather after lunch.  This gives us the flexibility to go to a different park in the afternoon.  Maybe we'll need it, maybe we won't, but I like having the option.

I'm also contacting the staff at Universal Studios to get in touch with Family Feud.  They tape at Universal Studios (which I know isn't a part of Disney) but Alex loves Steve Harvey (he wanted to be Steve Harvey for Halloween) and the show.  I don't think he'd do well with being part of the audience but if we could arrange a tour of the set, he would love that.  Since we're in Orlando anyway, it seems a shame to not try for the opportunity.

The staff at Disney has been as helpful and friendly as rumoured (although I had a brief second take when the third person wished me a "magical day" in under ten minutes).  I'm optimistic about this being a great trip and a good experience.

Thursday, 20 March 2014

Madonna and Autism

When Alex was little, he had almost no language.  He didn't really start to speak until he was almost four.  Today, he's fairly good with functional language, telling us what he wants (or doesn't want) fairly reliably.

When he didn't speak, one of the things he did respond to was music.  Since I could only tolerate so much "kid's" music, I played him music which I liked: Bon Jovi, ABBA, Phil Collins and Madonna (among others).

He really liked the Madonna music and would sing along, albeit it somewhat garbled since he wasn't really listening to the words.  (His favourite was Like A Birgin.)  This repetition without understanding is called echolalia.  With the help of our speech therapist, we used the echolalia to encourage him to speak more and pay more attention to what other people were saying.

Thus, it is fair to say that Madonna helped us to discover how to connect and communicate with our son.  We sang songs everywhere, at home, in the car, at the store.  For three and a half years, I sang "Drowned World/Substitute For Love" as a bedtime song each night.  One of the first things he ever spontaneously requested was "Dancing Pencils" which turned out to be a video of Madonna's Confessions tour.

A few years ago, I wrote Madonna a letter explaining the impact her music has had on our family.  I never heard anything back, which doesn't surprise me.  I would be surprised to discover she'd ever actually read it since I assume she has a whole staff of people who deal with such things for her.

It doesn't stop me from occasionally fantasizing that maybe she would be touched by the story.  Maybe she would name an album or a song after Dancing Pencils in honour of her littlest fan.  Or maybe she might even want to meet Alex to sing him Drowned World herself.

I even tell myself that someone with autism would be a perfect friend for a celebrity as they wouldn't be impacted by the social expectations of flattery.  They would be honest and treat the celebrity the same as anyone else.

Of course, the reality pin pricks the fantasy bubble fairly quickly.  There is a reason why celebrities tend to drift towards cancer kids or Downs' kids instead of kids with autism.  It is precisely because the kid with autism won't treat the celebrity any differently or recognize the specialness of the occasion.  If Madonna came to our house and sang Drowned World, Alex would probably stop her to request that "Mommy sing" or ask for "A Thousand Miles" (his new bedtime song) instead.  Because to him, that's how the situation should work.  He might be happy to watch Confessions with her, but he'd get just as annoyed with her as he does with me if she tried to interrupt or sing along.

At the end of the day, it doesn't matter if Madonna never learns about our family or all the hard work we put her music to.  Because it's not about her.  It's about us and our love and dedication to our child and our stubborn determination to help him to communicate.

We're the real stars of the story.

My Girly Moment

My sister's wedding is coming up in July and I needed to get a dress for the event. 

Unlike most women, I usually hate shopping, especially for clothes.  I'm a plus-sized gal, which means there are only a few stores I can visit.  If the trend of the season doesn't suit me, I don't have a lot of options.  Online shopping is one of them, but for a dress, it can be very hard to guess what will fit and look good.

I went into the mall with a solid plan B all ready to go.  If I didn't find something, there was still plenty of time to make something.  I even had a template in mind, the red dress Queen Latifah wore in the movie Last Holiday.


I'd go with a colour more suited to me, but as a pattern, it looked nice and was simple enough for me to do.

Instead, I found myself with the rather unusual dilemma of having two dresses to choose from.  The website isn't letting me copy the pictures, so I'll just include links if anyone is interested in checking them out.

There was a cobalt blue Greek-inspired flowing dress.  And a violet sheath dress with a side ruffle.  Both of them looked really good on me and were reasonably priced.

In the end, I went with the blue dress.  It was a little lighter than the violet one (which for July will be good) and the skirt flowed better for dancing.

I'm quite pleased with my choice and it's nice to have something settled with a minimum of work.  The red dress might be simple, but it would probably still take me four to six weeks to make it.  Now I can focus on possibly embellishing the blue dress (I'm thinking about adding some beadwork to the slit in front and the neckline) or simply accept off the rack and use the time for the other dozen things I need to do.

Wednesday, 19 March 2014

A Surprise From Camp

Last week, Nathan went to a day camp for March Break.  He did fairly well, a few temper tantrums, but nothing beyond the expected.  (We're still working on not hitting people when he gets upset, a slow process but one which is working.)

However, there was one incident which worries me.  Apparently, he went up to a group of girls and pulled down his pants.

Luckily, the girls didn't react and the counselors handled the situation appropriately.

I spend a lot of time trying to think and plan for different scenarios so that I can deal with them in a productive way when they happen.  Too often, a parental knee-jerk reaction will only make a situation worse or end up encouraging the behaviour. 

This wasn't one I'd worked on.

I've been reading some books on helping children with severe autism deal with sexuality, to help Alex with understanding puberty.  I didn't think I was going to have to apply those lessons to Nathan.

My first concern is trying to figure out why he would have done it.  Could one of the other kids have suggested it as a joke?  There were a number of older kids at the camp since the play time combined three different groups ranging from 5 to 12.  It couldn't have been an accidental exposure since he wasn't on his way to the bathroom or getting changed. 

If he thinks he's found a way to provoke a reaction from people, this could escalate quickly.  He's typical of children with autism that he has a hard time distinguishing between shock and amusement.  Since people often smile or laugh nervously when they're uncomfortable, someone with trouble reading social cues can believe they're amused.

I explained that his penis and bum were private and shouldn't be shown to other people.  In retrospect, I wonder if I made that too harsh, since eventually he will (hopefully) have romantic relationships and I don't want to make sex into something wrong or dirty.  But in the end, I've decided keeping it simple makes the message easier to understand.  I haven't suggested showing his privates is shameful or wrong, just socially inappropriate. 

It's something I'll have to keep an eye out for.

Friday, 14 March 2014

Something Nice For the Weekend

Heading into the weekend, I wanted to share this story about a family who used their son's Disney obsession to improve his communication and as a way to share thoughts and feelings.

These are the sort of "inspirational" stories which I like.  There's no miracle cure, no minimizing the amount of work it took.  The family is thrilled to find a way to reach their child, as we all are.

Wednesday, 12 March 2014

Prayers Answered

Yesterday and today went better for Alex. 

I was speaking with another mom who has two autistic children and I told her about how panicked I felt when Alex was misbehaving.

She replied "Of course, whenever they start to have problems, we always have to worry that it's the beginning of a long and difficult slide."

It put things into perspective for me.  I'm sure all parents worry but I remember a particular message being drilled into me over and over after diagnosis.  Behaviour problems have to be dealt with immediately.  Letting them slide can entrench the behaviour and make it almost impossible to remove.

Add in the stories which we have all heard, the opposite of the inspirational stories.  The stories about kids who simply got worse and worse, more and more uncontrollable, despite the efforts of therapists and parents.  Kids who had to be institutionalized to protect those around them.  Kids who ended up arrested as adults.

Even though those situations are a tiny fraction of a minority, the possibility still weighs on me.  Every time we have a bad day or I hear about an aggressive act, I wonder: is this the start of the downward slide?  Even coming back to good behaviour doesn't completely remove the worry.  No slide is only one way. 

As I type this, I don't know if my worry is justified or blown out of proportion.  Because it is a possibility.  Is my reaction like a fear of being mugged in a bad neighbourhood at night or is it like a fear of being mugged in a small town during the day?  I simply don't know and thus can't convince myself to relax my guard.

Tuesday, 11 March 2014

When Life (And Your Kid) Kicks You In the Face

Yesterday was not a good day.

Alex did all right in the morning with his assessment appointment but then turned into a miniature Tasmanian Devil in the afternoon (think Warner Brothers instead of Australia).  He threw a massive tantrum, kicking and hitting his tutor when she arrived.  We got him calmed down and working but then it was time to go pick up Nathan from camp.

He ran away and when I insisted on holding his hand, he began shoving and kicking anyone in reach.  Mostly me, then Nathan and (the ones I actually feel the worst about) some of the other kids.  Nathan got booted to the head once and I got three kicks directly to the face, one which started a nosebleed.  I lost count of the number of times he kicked me on the legs.

When we got home, I made a difficult decision.  To protect Nathan, I put Alex in his room with some toys.  Given how Alex was seeking Nathan out to hit him, I didn't see any other way to protect him.  Even if Nathan was right by my side, Alex was too fast.

I called Dave to get an extra adult back in the house, so Alex only had to stay in his room for half an hour.  But it made me think, what if I didn't have someone to call or what if Dave hadn't been able to leave work early?  I'm not comfortable with the idea of just leaving him in his room for hours at a time but I'm also not comfortable with leaving Nathan unprotected.

The whole experience was emotionally exhausted.  Once the kids were in bed, I gave myself permission to check out early and just went to bed.  It's hard to keep sympathy during an ongoing physical attack.  It's natural to emotionally withdraw to protect yourself but as a mom, I can't let myself be drawn into that.

I wish I knew what was triggering this.  Alex can be difficult but this is exponentially worse than his usual behaviour.  Is it the change in routine?  Lingering effects from the medication adjustment?  Has he eaten something which is irritating him (my personal theory so far since I already discovered a rubber snake in his BM)?  At this point, I don't have something I can work with.  All I can hope is that, like previous outbursts, it goes away on its own.

I felt like the worse mother in the history of the world yesterday.  Not only am I trying to physically restrain my child (I eventually had to sit down behind him and pin his legs with my legs and his arms with my arms) but I'm not being successful.  He's hurting other people.

It hurts to fail in this way.  Fail Alex, fail Nathan, fail society as a whole.  It's temporary but I can't pretend it didn't happen.  I knew I looked like a horrible parent and I wanted to scream at everyone that I don't like doing this but it's the only way I know how to protect everyone else in the moment.

Right now, I'm just praying that it gets better.  Because I really don't think we can handle too many more days like this.

Sunday, 9 March 2014

Friday's Checklist of Boredom

I knew Friday would not run smoothly.  I had to work, Dave had to work, I had no sitters or extra support and two kids at home all day.

I did not expect a swath of destruction in my house which would eventually have me follow Alex around like a junior detective trying to build a case against a Mafia don.  I probably should have but I failed to anticipate the scale.

During the day, Alex destroyed a build-it-yourself clock he got for Christmas, a Rubix cube (also from Christmas), two books, a wicker basket, three plastic buckets, twelve pictures from our wall, two reusable shopping bags and part of the wall in his bedroom.  There are also a couple of mangled bits of plastic which I don't recognize and can't guess where they came from. 

Most of the destruction happened while I was working.  I'm tied down to the computer and phone and distracted.  He figures out pretty quickly that he has carte blanche to do what he likes as long as he doesn't attract my attention.

This doesn't leave me feeling great about the whole of March Break or <gulp> the summer.  But we will figure something out.

Friday, 7 March 2014

It's All In the Ceiling

Yesterday I posted about parents who give up their children to strangers when they can't handle them any longer.  I mentioned how no matter how hopeless and frustrating the situation feels, there is almost always a option of improvement.

I now have a personal illustration of that point. 

My older son is not toilet trained and will fling his BMs onto the walls and ceiling to get it away from him.  It's gross and unpleasant to deal with.  There have been times where I've spent over two hours cleaning up his room after an incident.

It's something we continue to work on but last year, we took steps to make our lives easier.  We replaced the popcorn ceiling finish with a smooth ceiling finish.  Suddenly the amount of time to clean up his room was a fraction of what it had been before.

Last night, I went in, realized we had an incident, woke Alex up, took him to the bathroom for a shower, cleaned up his room, washed down his bed, made up a new bed, got him into new pajamas, tucked him into bed and sang him a lullaby in less than twenty minutes.  What would have likely been a two person job taking forty-five minutes to an hour was handled by one person in twenty minutes.

We haven't fixed the underlying problem but we did make it more tolerable and less frustrating to deal with.  That's a very real improvement.

One of the best pieces of advice I got from another parent was to accept where my children were and what was happening.  Don't spend your time and energy on focusing on where they "should" be.  Look at where you are and take the steps necessary to deal with it as things are.  It's why we bought a sprayer attachment for our toilet (it's meant to help clean cloth diapers but it's been darn useful for a non-toilet trained child in underwear).  We recognized that the situation wasn't going to go away in a hurry and took the steps to make our lives easier while we dealt with it.

Thursday, 6 March 2014

Re-Homing

I hadn't heard of this until both Law & Order: SVU and Criminal Minds featured similar storylines with it.  People with "difficult" children offer them up to strangers on the internet with little or no paperwork or legal repercussions.  Since both programs tend to base their plots on real world events, I went looking and discovered this article on Reuters about re-homing.

The concept disturbed me a great deal.  Every parent goes through points of wanting a break or wishing to be free.  It's an understandable emotional reaction to a demanding and unceasing job.  Add in the difficulties of special needs children and parents definitely need respite to avoid burnout.  But respite is a little different from just handing your child over to strangers.

I should be fair.  The children discovered in the Reuter's article were mostly adoptees, often with psychological problems after abuse or institutional care.  But the challenges those adoptive families face are similar to those faced by families with autism.  The job is harder than anyone can prepare you for.

I also feel I should distinguish between cases like this and those where a families turns their child over to the government for care.  Sometimes a family legitimately cannot care for their special needs child any more.  In that case, the government is at least an acceptable option.  Not ideal and I feel there should be more options, but there are people checking up and background checks at the very least.

In both of the television episodes, the people offering to be the new parents were sex offenders, using this as an opportunity to gain access to children whom no one would be looking for or listening to.  I don't know what the real life percentages are and frankly, it frightens and disgusts me too much to look into it deeply. 

I get being frustrated and worn out.  I get feeling like there's no hope.  But there are two factors these parents aren't considering.  First, these feelings are often temporary.  Even in a horrible situation, progress can happen.  Some children may never be "normal" but they can often still improve.  Second, no matter how bad the situation is for the parent, how can it possibly compare with handing over a child to abuse? 

In the episodes, the people giving up the children tried to pretend their child had been abducted.  Presumably so that no one would suspect them or blame them.  In the article, the families didn't pretend.  They just handed over their kids and walked away.

It strikes right to my core.  Kids trapped in private hells, handed over by those who should have protected them.

Wednesday, 5 March 2014

Crazy Days At Work

Usually at work I get three to five calls a day.  On a busy day, there might be ten.

On Monday and Tuesday, I got over 20 calls each day.  I literally had trouble checking messages because someone new would be calling in.

I'm feeling bad since I'm not able to get back in touch with everyone on the same day.

This is something I was discussing with another working mom with a special needs family.  I have a certain professional pride.  If I do a job, I want to do it well.  But it is critical that I don't let my job creep into the time I need to take care of my family.  There's no one else to take up the slack on that front.

I'm sure most working moms feel this way.  Keeping a work-life balance isn't a matter of delicate adjustments, it's a no-holds-barred wrestling match where both sides are trying to take over your entire life as completely as possible.

I remind myself that this can't last forever.  I will get through this busy time and then things will settle back into something more manageable. 

Tuesday, 4 March 2014

Sick And Tired of Battling The Cold

I mean that in both senses of the word.

I'm still fighting this <insert profanity of choice> cold.  It's dragging on and on with coughing and a sore throat keeping me up at night and plenty of snuffles during the day.

I'm also sick of the frigid temperatures outside.  It's March and it's not supposed to be -30 anymore.  I know I'm supposed to have a certain Canadian stoicism towards the weather but this is ridiculous.

I keep telling myself that it will all pass.  Eventually I'll be healthy again and the warm weather will come.  But just a little note between myself and whatever supernatural powers are listening?  Sooner would be better.

Monday, 3 March 2014

The Assessment Begins

Alex's new assessment has officially begun.  We had our parent intake appointment to discuss what we were looking for.

I've got to talk to Dave about how he phrases things.  He told them that "he always follows through", implying that I don't.  I've been working on Alex's oppositional behaviour (like when I tell him to do something and he starts to whine, even if he complies).  So, yes, sometimes the issue gets clouded when Alex starts to tantrum.  But I always insist on completion of the two goals: what I've asked him to do and doing it without whining.

That aside, I'm pleased with how we've started.  The psychologist had good questions about how to get Alex to work with her and how to make the assessment useful.  He doesn't do well on the standardized tests so we'll do them in a non-standard way.  We're interested in knowing what he can do and what he can't, not in whether or not he can comply with the testing protocols.

The other surprise for me was that Dave said he wasn't sure this was a necessary step.  Since Alex is likely to go through significant behaviour changes during puberty, he doesn't see how knowing where Alex is now will be helpful.  I suppose this is probably a fairly typical attitude but I'm surprised he doesn't see what is so clear to me.

As Alex gets bigger and older, it will be more difficult to work with him.  He'll be able to resist physical prompts.  And his brain and behaviours will become more entrenched.  Thus we need to start now on some of the challenges which are likely to limit his independence (like toileting, bolting and compliance). 

Next week we start the actual testing sessions.  I'll be bringing treats to use as reinforcers as well as a visual strip to remind Alex of the goals.

Sunday, 2 March 2014

Cosmic Sleepover

On Friday, Nathan's Beaver troupe had their annual Cosmic Adventures sleepover.  I went along as a designated parent.

This is pretty much the highlight of the Beaver year.  And it's frankly the kind of camping that I can get behind.

We arrived at 7:30, about an hour before close.  Nathan immediately took off to play.  The Beaver leader, Rainbow, was very considerate.  She tracked me down to ask if there was anything they needed to know for Nathan for while he was at Cosmic.  Luckily, we had memberships from the time he was a baby until this year, so he's very familiar with the place.

After everyone else had gone home, the Beavers got to do a craft.  (I apologize for the poor quality of the pictures.  I tried using my phone camera and decided I will be bringing a real camera in future.)



 
 
After craft, we had a little snack.
 
 
And then we had campfire.  Nathan especially enjoyed the "Button Factory" song.  (Hello, my name is Joe.  And I work all day in a button factory.  I got a house and a dog and a family.  One day at work my boss came to me.  He said "Joe, are you busy?" I said "No."  He said "Push this button with your left hand." ... then right hand, left foot, right foot, nose, bum and tongue.  It's a lot of wiggly fun.)  I didn't get a picture of it.
 


 
We sent Daddy a "Night, night" picture.
 


And then we picked out our spot on the playstructure to sleep for the night.  We were about twenty or twenty-five feet up in the air.


Once we got settled, Nathan turns to me and says he has to go to the bathroom (which is down on the ground).  I tell him to go ahead and he tells me he'll go faster on the slide.  Which he does.  When he comes back, a few minutes later, he tells me he thinks he forgot to wash his hands and needs to go down the slide again.  I tell him it's okay.  A few minutes later, he needs to go to the bathroom again.  Five visits in all before he decides he's finally done. 

He was very intrigued by sleeping up so high.  Especially since the floor was woven cargo straps and we could see through the gap all the way to the ground.  But no fear from him.

It was a short sleep.  The kids didn't settle until nearly midnight and Nathan was up at 5. 

But we all had a good time.  I'm even looking forward to next year.