Tuesday, 30 September 2014

Stories Behind Disney Pictures

The Disney trip was a challenging one for us.  I'd told everyone that I didn't consider it a vacation for me, but rather an opportunity to give Alex a once-in-a-lifetime experience.  And that's pretty much how it worked.

I was not overly impressed with WestJet.  Despite my efforts to make sure that they were aware of Alex's needs, my request for a meet and assist seemed to hit everyone by surprise, leaving them scrambling to catch up.  The individual people were all eager to be helpful but there was a serious lack of communication.  Add in the flight delays and both travel days were long and difficult.

Disney, on the other hand, lived up to their reputation for going out of their way to make everything run smoothly.  There were several significant challenges, but they helped out with all of them with grace and pleasantness.

The biggest challenge was that Alex wet the bed every night, despite me getting up every 60-90 minutes to escort him to the washroom.  I am sure that housekeeping threw a little party to see us go but they were always courteous and understanding when we dealt with them.  They even brought us a pile of extra sheets so that I didn't have to request them each morning.

Alex used his noise-cancelling headphones almost constantly.  Although this was pretty much the quietest that Disneyworld gets, it was still full of enough people to make him edgy.  I had expected that he would want to walk around the park to look at things but instead, he much rather preferred to stay around the hotel.

The character experiences were all great.  I could tell some of them had difficulty since Alex doesn't follow a typical child "script" when meeting them but they all improvised well.  The most impressive one was Princess Anna, who came over to meet Alex in line while she had a break and gave him a hug right over the velvet rope.  Considering that the staff told us that she and Queen Elsa meet and greet over two thousand people each day, I would have thought her more than justified in grabbing two seconds of relief while she could.

Seeing Alex's genuine delight at meeting the characters made the trip worth it.  I'm sorry he didn't get more of a Disney experience, but he was happy with what he had, which is enough.

For those considering using the Disability Pass, we found it useful but it's certainly not going to speed you through the park.  You have to sign in at Guest Services to get the pass and then you can use it throughout your stay.  You go up to a ride or attraction and they give you a return time which is the approximate equivalent of the standby wait (which is usually posted outside).  When you return, you join the FastPass line, which is usually an additional 5-10 minutes.  The math on this tells you that children with disabilities end up waiting longer than any other patron to see what they want to see.  And if waiting in line is an issue, then there isn't really a way to avoid it.

We brought Alex's iPad and let him use it while we were waiting, which helped.  I also did a visual schedule for him each day, which also helped.

I'm looking forward to taking Nathan next year but I think this will be the end of our Disney adventures for a long time.  I'm still exhausted from having gone through it.

Monday, 29 September 2014

Pictures from Disney

Initially I'd planned to do a big post with all our stories but work and post-travel unpacking and crisis management is cutting into my blogging time.  So I've decided to go ahead and post the pictures.  I'll tell the stories tomorrow.

Alex and Aileen from WestJet.  He took a real shine to her and she escorted us through the airport.

Alex on Disney's Magical Express, our transport to and from the airport.

Our first day at Animal Kingdom.  Alex liked this frog outside the Rainforest CafĂ©.

Alex loved his daily swims at our hotel's guitar-shaped pool.

He also loved the elevator.

Alex and Rapunzel.

Alex and Mickey, backstage at the Magic Theatre.

Alex and Goofy at Chef Mickey's.

Alex and Donald at Chef Mickey.

Alex discovered Frozen balloons in this bunch and spent twenty minutes being delighted as the wind blew them down to us.

Alex (as Prince Charming) was delighted to meet Cinderella.  He immediately asked to see her shoes.

At Cinderella's Royal Luncheon, he also met Snow White (whom my husband insisted was Sleeping Beauty)

And Sleeping Beauty (whom he insisted was Snow White ... Dave, never argue with a Disney Queen.)

And Ariel.

This was the highlight of Alex's trip, getting to meet Queen Elsa and Princess Anna.  It only took some major begging from Mom to make it happen.

On our last day, meeting Minnie at Chef Mickey's.  Alex picked out the glittery mouse ears himself.

Friday, 19 September 2014

Enjoy the Break

It's vacation time which means no posts for the next week.  I'll have lots to tell you all about when I get back.

I hope everyone has a good week.  I hope we have a good week! 

Thursday, 18 September 2014

OMG! It's Coming!

I have less than a day to get my final preparations done for Disney and I'm in a bit of a panic mode.

On Tuesday, I realized I'd have to sacrifice my 1000 word per day goals in order to get ready.  Reluctantly, the computer got put away.

Wednesday, therapy was cancelled and between music lessons and Beavers, I spent less than an hour in the house after I finished work.  Not a lot of progress.

Today I've been running around like crazy, making sure I have all my paperwork together, packing clothes, toiletries and cutlery.  No, really: cutlery.  We've got a fridge but not dishes provided in the room, so if Alex is going to eat, he'll need something to eat out of.

Realistically I know I'm doing quite well.  I've done a lot of preparations.  But that doesn't change the internal panic button.

Wednesday, 17 September 2014

Parent Teacher Results

Yesterday we had a meeting with Nathan's teacher to talk about his progress in school.  We've asked her to keep us in the loop about his behavior, especially anything which could be termed aggression.

We were told he's had a few incidents, but nothing she would call aggressive yet.  The biggest one was where he ripped up his worksheet after she asked him to do it on his own.  After awhile, he taped it back together and did the work. 

These sorts of things bother me.  Since I was an eager academic, the thought of ripping up a paper in a teacher's face wasn't something which even crossed my mind.  But I keep reminding myself that Nathan is a different person with different interests and different challenges.  If the teacher feels this wasn't a red alarm siren, then I'll trust her opinion.  She handled it well and Nathan eventually settled in to do the work.

The real underlying problem is that Nathan is afraid of making mistakes.  Trying out new skills terrifies him and he'll beg and whine and plead not to have to do them.  As someone who has struggled with perfectionist tendencies and fear of failure, that I can sympathize with.  I'm trying to be gentle and not bombard him with messages but I'm also trying to let him know that everyone takes time to learn, everyone makes mistakes and that they're not a big deal.

But I suspect this will always be a challenge for him.  Just like it's always been one for me.

Monday, 15 September 2014

The Tooth Will Out

On the weekend, Alex finally managed to remove a tooth which he had been working on for weeks.  He used spoons, cups and even our stairs to try and get it out.  This isn't the first time he's been aggressive about getting a loose tooth out and the determination had been bothering us.  Especially since we weren't entirely certain it was a baby tooth.

Our fears were even greater when the tooth came out with a long chunk of root still attached.  The gum healed quickly with minimal blood, which suggested a baby tooth, but having a good centimeter of root is still alarming.

I contacted our specialty dentist at CHEO (children's hospital) and was told it would be three weeks before they could see him, as it wasn't an emergency.

I didn't want to live with uncertainty that long (especially since he shows signs of working on another one) so I called our family dentist and brought in the extracted tooth.  (There was no point in bringing Alex in as he can't tolerate anyone looking or working in his mouth without full restraints, which is why we have to go to the specialty dentist.)

The dentist quickly assured me that it was a baby tooth and that was when the divide between regular parenting and autism parenting quickly set in.

He tried to reassure me by telling me that it was impossible to rip out an adult tooth.  But since I've watched Alex rip out bolts attached to the wall and a car's license plate, I know he has the strength.  Add tools and his insensitivity to pain and I can't rule it out as a possibility.

For regular people, yes, ripping out a tooth actually qualifies as a form of torture.  For a kid with strength, pain tolerance and oral sensitivities, it might make more sense to rip out the tooth than tolerate the discomfort of food around it.

I'm glad it wasn't the case but I've got a bit of a bristle at being dismissed as delusional.

We'll be trying for a panoramic x-ray soon.  Our specialty dentist is concerned at how slowly Alex's adult teeth are coming in.  (We've had several bare patches of gum for months.)  There's also the concern of extra teeth.  Once they have a better idea of how many tooth buds are waiting, we should know what we're dealing with.

Sunday, 14 September 2014

Ontario Schoolboard Special Needs Road Map

A couple of moms have spent the last two years putting together all the various sources of information about what children with special needs are entitled to through the Ontario school board. 

They've defined terms, they've looked up the contradictory regulations, etc., and combined it all into an interactive program which parents can download.

I suspect teachers and administrators will be interested as well.  There is a lot of material to cover.

I haven't had the chance to go through the program myself yet but it's getting a lot of praise.

Thursday, 11 September 2014

The Line Between Criticism and Rudeness

I was chatting with another mom who has an autistic son and she was explaining to me the challenges she's been having with her son's rudeness.  He'll walk up to people and tell them they have bad breath or a stain on their clothes or that their hair looks "weird" or any number of off-putting personal comments.  His sister has been bearing the brunt of it.

She has been trying to explain to him over and over that these comments are inappropriate, that it doesn't matter if they're true, that they hurt people's feelings.  But his counter argument is "Mom, you tell me things like that all the time."

It's true.  We do tell our children things we'd never dream of telling a stranger or friend.  (My parents still think it's appropriate to tell me to move the litterbox and that I should really weed my lawn on a regular basis.)  We tell them that they can't wear a shirt in public which has a giant stain or a series of holes down the front, even if it's their favourite.

How do we explain that social boundary to a child who doesn't get it?  What is the real difference, beyond "because I said so"?  If we draw the boundary around family, then the sister will still be a target.  If we stick with not doing it because it hurts people's feelings, then why is okay for the parents to do it?

It's a real puzzler, and one I don't have a ready answer for.  The closest I can come to is in the delivery.  There are gentle ways to alert someone to a potentially embarrassing situation.  Maybe set up strict guidelines of what it is appropriate to comment on (it might be okay to gently tell someone they have a coffee stain on their tie but it's never okay to tell someone their hair looks weird). 

The situation is likely to take several weeks, if not months, to resolve.  And the exceptions are going to overwhelm whatever general rule is put in place, because they always do.

Wednesday, 10 September 2014

Dance Party At The Doctor's

We had to visit the doctor for a prescription renewal and, as often happens, we found ourselves waiting in an exam room without much to amuse Mr. Alex.

He asked me to sing "Compass" and I decided to just play the song on my phone since I frankly don't know much beyond the chorus.  Alex very much enjoyed it and so we kept on playing music.

To my surprise, he actually engaged with me as part of his little dance routines.  Usually I get told "no dancing" or "no singing" but this time I got to be part of the group.  It was a really nice experience and one I'm going to hold on to.

Tuesday, 9 September 2014

New Funding For Adult ASD support (Open Sept 15-30)

A new charity is opening up funding for Ontario residents who are supporting a person with ASD who is 18 years +.  The Building Brighter Futures Fund is taking applications between September 15th and 30th.  Funding can be used for recreation, skill development, respite, professional supports, tuition or other costs required to help an adult with ASD achieve some independence.

Monday, 8 September 2014

Why Is It So Hard To Stand Up For Oneself?

I'm not a shrinking violet.  I've gone to the mat with school boards, charities and on one occasion, a news franchise, without hesitation.  I like to think I'm not aggressive but I am incredibly stubborn and an out of the box thinker, which helps to wear away at problems.

But when it comes to myself, I have a hard time summoning up that fire.

For the past two years, I've been seeing a dietician at my doctor's request.  My cholesterol and blood pressure are high and with my family's history of heart attacks, this is not a good thing.

I've tried the dietician's diet.  It sucks, making me edgy and sends my food cravings through the roof.  I've stuck to it for 6 months straight at a time, becoming more and more irritable.  And it has done absolutely nothing for me. 

And yet, I just came back, having agreed to try it again.  The exact same thing which I hate and which has not worked in the past because apparently this woman is stuck in a feedback loop and/or only has the one technique.

It may be terribly passive aggressive of me but I'm not honouring that promise.  But it got me thinking, why is it so hard to stand up for oneself to an authority figure?  (Or maybe it's just me but the self-help section at Chapters implies otherwise.)

It doesn't seem to matter how many times I tell myself that I am the one in charge of my life, that I don't owe this woman anything, that I've given her a fair shot and I should say forget it and walk away and not come back.  She trots out the same tired arguments and disappointed face and I agree to do it because I don't want her to think I'm not cooperating and I don't want to hurt her feelings by implying she doesn't know what she's talking about.

The strength of social pressure, the downside.  To conform to the group, I subjugate my own interests.  Even if I don't particularly want to be part of that group!

Soon it will be time for the annual physical again and I can talk to my doctor and tell her it's not working.  At least I'm comfortable talking with her.

Sunday, 7 September 2014

Time To Assess

This week, we have our 3 month review for Alex's behaviour program.  So I took the time to review how he's been doing.

There are a couple of good achievement points.

He is much better at following simple directions now when given by a variety of people.  At least when he's paying attention.  But he will listen to prompts to pay attention, so I'll call it a net win.

He's more likely to stay with me when we go out.  In the past month, for the first time, I went to the grocery store with both boys without an extra adult.  Now I only went in for a few items and we beelined it through rather than browsing, but it happened.  Having the flexibility to go to the store spontaneously when we need to rather than having to have all eventualities covered in advance is huge.

In short, I'm pleased.  The therapists will be tackling toilet training next and I'm keeping my fingers crossed on that one.

Friday, 5 September 2014

Travel Site for Autism

One of my readers suggested this site: Autistic Globetrotting: Autism Travel Made Easy.

I haven't gone through the whole thing as yet but thus far their tips are helpful.

It would be great if hotels had designated "autism" rooms like they have wheelchair-accessible rooms.  Rooms which would be quiet and could have extra security or alarms on the doors.

We use a chain of jingle bells when we stay in a hotel.  A little tape to secure it to the door and we have an instant alarm which will sound if one of the boys decides to go exploring at night.  Alex can reach it but if he tries to remove it, it will still chime.  It makes for a restless night of sleep but we manage.

My big concern is bed-wetting.  I've tried bringing tarps to put under the sheets but the texture irritates him and he'll go through the sheet to get at it.  I think I'll bring a proper fitted sheet with us to Disney, which means I'll have to verify the bed size.

As long as he doesn't soak the mattress, everything else is easily changed and dealt with.

We'll also plan to keep him up late and make him get up at the first signs of alertness, reducing the chance of an accident.

The Autistic Globetrotter's site made light of some of the concerns.  They dismissed parents who find it overwhelming to travel as simply being unprepared.  While I don't think travel is automatically off the table, it is certainly far more exhausting than travelling with a typical child.  I can understand families who simply choose to avoid it.

But whatever their attitude, they are certainly full of advice and ideas to try. 

Thursday, 4 September 2014

Taking A Temper Check

I've had a couple of people contact me privately to ask if I'm having trouble keeping my own temper in the face of Alex's aggressiveness, Nathan's tantrums and my own anxiety.

It's good to have other people checking in with me but I think it's important to understand my own limits and recognize when I'm getting into a danger zone.

Being frustrated as a parent, especially a special needs parent, that's normal and acceptable and no one should ever feel guilty about it.  We're dealing with things which weren't even listed on the parent brochure as possibilities (and that thing wasn't all roses and sunshine to begin with).  It doesn't mean we love our children any less, it just means that we're human.

That said, that doesn't leave any room for excuses.  When the environment is high-stress, then it is even more crucial to know our limits.  People can't parent in anger.  It clouds judgment faster than a dozen shots of tequila.  When frustration and anger start to tempt a parent into striking back, then it's time to walk away, regardless of the consequences.  Forget consistency.  Forget other people's reactions.  Take the time to regain your calm.  That's the number one and, frankly, the only priority in that moment.

I don't think the temptation to violence is a sign of a bad parent.  I think it is the sign of a parent who is over his/her head and needs help.  When everything has been tried and there are still no signs of success, it's easy to let frustrations lash out.  But at the end of the day, the parent is the adult and so the onus is on him/her to figure it out.

This is part of the dirty little secret of the special needs world.  No one wants to be linked in any way to abusive parents but this job is soul-grindingly hard and twenty-four-seven.  I know a number of parents who are overwhelmed but have no one they can trust with their children.

There are options for help.  OCTC and a number of behavioural therapy companies offer paid respite.  Sometimes you have to be a client, others are open to anyone.  Educational Assistants at your local school often supplement their income by doing respite (I find I've had to go through the principal who passes on my contact information to interested parties).  It's not ideal and it's certainly pricier than hiring a local teen, but it's something.

Taking time for yourself is a necessity.  Without it, it's easy to drown in the requirements of everyone else.  It's not selfish, it's part of being a good parent.

Wednesday, 3 September 2014

A Last Minute Discovery: Disney Grocery Delivery

A friend with food sensitivities passed on this information to me.  There are several grocery stores in the Orlando area which will deliver to the Disney resorts.

This is a huge relief for me.  Although Disney has promised to accommodate Alex's food requirements, he's still likely to need some supplies for private snacks and meals.  I had planned to do a taxi run to a local grocery store (and had tracked down 3 within a 10 minute drive of our resort) but if we can have the food delivered, that would be awesome.

We can stock up on the basics of milk, bread, peanut butter, cheese and some fruit to keep in the room (which comes with a fridge).  Then meals and snacks can be readily available and brought with us.  Including for the flight home, which will be a difficult day.

I've gone through a couple of websites and it looks fairly straightforward.  Check off what you want and indicate the day you want it delivered.  Pay via a credit card and the front desk will receive it, letting you know once its arrived.

Tuesday, 2 September 2014

Back to School: An Eerie Silence

Today, for the first time in weeks, a hush fell over the household.  Nathan had been safely delivered to his Grade 2 teacher and Alex was on his way to his autism program.

The quiet was disconcerting.  For the last two months, prolonged silence meant that my children were doing something they didn't want me to catch them at.  It left me feeling vaguely uneasy for most of the morning.

Of course, I do have actual reasons to feel uneasy.  Nathan's teacher did not call me back so I never had an opportunity to meet with her to discuss strategies for dealing with Nathan when he's upset.  I discovered she was away on vacation until a few days before class started and so did not have time.  We did talk briefly in June but that was almost three months ago, so I did want to have a chance to update and refresh.

There's also the challenge of dealing with both Alex's therapy and his school.  I'm picking him up at this point (since the transportation company apparently does not believe in doing things in advance) to bring him home to do therapy, which is a little bit of added stress in the day.  He's going to miss the weekly trips to go swimming with the other children in the program, which is likely to really upset him when he understands that.  I'm working on seeing if his therapists can work swimming into the schedule as a regular reinforcer but we'll have to see.

Both kids have been out of sorts and irritable through the weekend.  Anticipation of a transition, I suspect.  I'm hoping we all settle into a routine quickly.

Maybe it's the Disney trip looming over this month.  Maybe it's all the work I'm trying to get done on my novel to make sure its ready to publish (check out www.pastthemirror.com for further updates on that).  Maybe it's just leftover sadness from another summer biting the dust.  I'm feeling a lot of anxiety but I can't quite put my finger on any reason which seems sufficient for the level I'm dealing with.

I'm losing sleep worrying about Alex's future.  I'm afraid of not being able to get his aggressive behaviour under control.  He's doing better but when he loses it, he really loses it.  And we have further evidence of his lack of empathy with him provoking the cats all summer to make them hiss.  He thinks its funny and will go to great lengths to get a "fix" of hissing.  He's been going after them enough that we've had to discuss the possibility of finding them another home.

These are good reasons to worry but honestly, aside from the persistence of poking at the cats, there's nothing new here.  He's always had trouble with understanding why aggression is not simply a useful tool.

I worry about Nathan.  Grade 2 was when we had the bottom drop out on us for our hopes for Alex's integration (and with the same teacher Nathan currently has).  And Nathan has trouble controlling his behaviour when he's upset.  Again, he doesn't do it all the time, but when he does, it's spectacular.  I suspect that for both of them, they are trying to control their tempers more than they would appear to and thus it takes a pretty big feeling to overwhelm their control, which means a big explosion.

When I was younger and knew everything, I used to believe that people who were anxious all the time were worrying about nothing.  If they simply took some time and got a decent perspective on their lives, most of their perceived problems would present solutions.  Worrying distracted from finding answers.

I still believe that worrying distracts people from finding answers.  But sometimes the answers aren't out there to be found.