Saturday, December 15, 2012

Real Inclusion

We hit a milestone today.  My little man attended his first movie at the theatre.  This my friends, is huge.  All four of us were able to go to the movies together as a family. 

It all started a few months back, when a local mom took it upon herself to start a petition to get our local movie theatre to offer sensory-friendly movies.  Basically, the movie volume is lowered, the lighting is brighter than your traditional movie, and it's acceptable for people to chit-chat, and move around if they have to.  Or if they want to.  While the theatres have not yet committed to doing this on a regular basis, they did invite the autism community to attend a movie this morning. 

Going to a movie might not seem like a big deal to some families, but perhaps that is because it's a real option for you.  A way to kill a rainy afternoon, or a great last-minute recreational option.  But to us, loud movies, darkened theatres and the need to be hush-hush aren't a real option.  So, what happened this morning was an example of real inclusion.  A commnity event was made accesssible to those who might be otherwise excluded. 

I loved that I didn't have to worry if himself failed to whisper.  I loved that the kid behind me periodically kicked my seat, and his parents didn't have to worry that I would be upset.  Or even be offended in the least.  I loved overhearing one boy say to another, "when my fish dies, I'm going to get a rabbit, and when my rabbit dies, I'm going to get a reindeer."  Moreso, the fact that he said this loud enough for all to hear, in the middle of a movie theatre, and not one person was annoyed. 

You see, sometimes it's not just the person with the disability who needs to be included.  Sometimes it's the whole family. As families, we need places to go and  things to do, but we want to be able to do them in an accepting environment.  We can do that for each other, but we need community partnerships to provide a breadth of experiences and options for our families.  We need companies and venues who are compassionate enough to make the effort to serve the whole community.

So, thank you to the mom who took the time, and put the energy into asking for this movie experience. 

And thank you to Empire Theatres for being willing to make small accomodations, that make such a big diference.

This morning, we went to a movie.  All of us, together.

Sunday, December 9, 2012

No, I Do Not Hate Autism

Just this past week I really came to realize the importance of perspective.  One truly can see a glass as half full, or half empty.

I opened up my facebook a few mornings ago, cup of coffee in hand, planning on spending a few mindless minutes prior to starting my day.  In my notifications, I saw that I had been invited to an event, it was called "I love my child but I HATE AUTISM".

Yikes.

The name itself gave me a visceral reaction.  As my boy was hovering nearby, I found myself blocking the screen so that he would not read those hurtful words.  The boy we have been raising to not only know that he has autism, but to be proud of it.  My immediate reaction was to post on the event saying that it a poorly named event, but after a moment's thought I decided I would "let it go".  We can't tackle every little thing after all. 

Later on, I just had to take a peak back at the page, and was surprised to see that there was a mocking tone being used towards those who had taken the time to acknowledge that they found the event name distasteful.  The offended were being treated as overly sensitive people with their heads in the clouds.  Others speculated that they must be the parents of young children, and obviously not dealing with aggressive adolescents.  Needless to see, it was at this point that I added my own two cents worth.

Others on the event page likened hating autism as being equal to hating cancer, or epilepsy.  I just don't get how they could possibly draw these similarities. You don't have to agree with me, but I don't see autism as a portion of my child. He is not a whole with one deficient part. Autism is sprinkled throughout him, integrally mixed in, where it belongs.  Autism is not a disease.  It is not like Dexter Morgan's "Dark Passenger", that needs to be segmented into a part of their being.  It is their being, it is how they interpret, and integrate into the world.

How can we hate autism?  This is when I saw the benefits of a differing perspective.  People on this page spoke of what their children should be, or could be.  They see autism as a parasite, feeding off their child, taking from them, disabling them.  They just don't seem to see their children for who they are.  Autism is not some masked terrorist who stole their child.  Your child is there, right there in front of you, if you are too busy grieving the child you thought you had, you might miss out on the chance to love and enjoy the one you have.

How could I hate autism? Autism has many faces, but for me, it is the beautiful face of my boy.  It is the golden thread that is woven in and out of every fibre that is the tapestry of who he is.  Who he was meant to be.  And to me, he is perfect.  I could hate his autism no more than I could hate his creativity, his sense of humour, or any other part of his personality. To hate autism would be to hate him. 

I love my child, and I stand in awe of his autism. 

Friday, October 26, 2012

The HowdaHUG Chair: Product Review

"Don't rock your chair!"

This was a constant chorus in our house.  The chair rocking had gotten extreme, especially while doing schoolwork.  My boy eventually managed to create a horizontal line of cracked plaster on the kitchen wall, right behind his chair, aligning perfectly with the top of his chair.  ARGHHHH!!!!!

When a child has a problematic behaviour that has a sensory-based cause, good old fashioned discipline isn't going to fix it.  We could come down hard on the chair rocking, but his body was still going to have to find a way to get that sensation. What to do???  Well, if you're lucky enough to have a fabulous occupational therapist, you ask her for advice.  Her advice to me was to try the HowdaHUG.

I, of course set  off to research it, and was instantly intrigued.  The chair is dubbed as "the listening chair" as it is known to help children settle and focus.  The simple little lightweight chair can be used on the floor, or placed on top of another chair.  It is small, portable, and user-friendly.  For children who need movement, and who crave deep pressure, this chair meets both needs.

When the chair arrived, I was ecstatic.  The kids were very interested in it. In fact, they were fighting over it!  But I have to admit, I was worried.  The thing they liked most about the chair was taking turns sitting in it, and then promptly flipping backwards.  This wasn't the calming tool I'd had in mind!  But, my fears were soon subsided.  As it turns out, the HowdaHUG has a slight learning curve.  The child needs to learn how to balance the chair, then they quickly master tipping back and forth to create a rocking sensation - without falling all the way back!  This process did not take long, but the fun of falling back certainly helped build some excitement over the chair.

We've had the HowdaHUG for about a month now.  And I can't say enough fabulous things about it.  Whenever my son grabs a book, he typically grabs his HowdaHUG too.  He loves to prop up in it to read.  He always played Lego at his Lego table, but lately he has been taking a bin onto his bed, along with his HowdaHUG.  The fact that he is using this independently, without prompting means that he legitimately enjoys it.  As for my kitchen wall?  It hasn't been chair-smashed in the last two weeks.  Success!

The HowdaHUG is a must for your sensory toolkit.  Versatile, portable, affordable, effective, and fun.  It can be used at school or at home, or anywhere. 

One day Aiden looked up from his book and said, "Mom, the HowdaHUG rocks."
I'd have to agree.


Tuesday, October 2, 2012

Notes on Accomodations

I think there may be misconceptions about accommodations for people with special needs.  We all know that some people really need them, but there are just so many people who want them, without necessarily having just cause.

Just think about those blue parking spots out there.  Of course everyone would love to have prime parking, but that does not mean that we need it! 

There is quite a difference between needs and wants.  This is something that tends to get lost in a world where it is every man for himself. 

Instead of recognizing, and appreciating that we need to level up the playing field for some people, we get resentment, and a feeling that some people get everything.

Perhaps you have come to believe that your child does not get the special treatment they deserve because they do not have a disability.


If you are in a position in your life where you cannot understand the need for allowances being made, I envy you.

 
Accommodations do not give one an advantage over another, they generally just give a person who is already disadvantaged an opportunity to participate, or engage.  Without accommodations being made, this might not be possible, or perhaps just an awful lot more difficult.

Do not begrudge people the assistance they need.  Do not take for yourself, a service that rightfully belongs to another.  Instead, remember to feel gratitude.  Be grateful that your body allows you the ability to park far from the door, and still get into a building.  Appreciate that you and yours are able to wait patiently in a line-up without dire consequences. 

When you are upset that there are services you do not feel that you can avail of, change those thoughts into thankfulness that there are services that you and your family do not need.

Wednesday, July 11, 2012

Something So Simple

I'm trying.  I really am.  I can see that my boy is much more ready, and willing even, to do more group activities, so we are doing more.  And for the most part, it is going really well.  You'll find us at the playground, at the beach, out there.  Trying.

But, you still hit a rough patch here and there.  It is just going to happen, good days and bad days, good mornings, bad afternoons, that's just how it is.  So yesterday, when himself hit a rough patch in the middle of the craft room at the museum, I wasn't really surprised.  The line-up to get in had been long, there were automatic flushers in the bathroom, several little things that had just Added Up.  To the untrained eye the meltdown came from nowhere, but a mom's eye had seen the little path silently laying its stones.

I quickly removed him from the area, looking for a quiet place on a nearby bench.  I was acutely aware of the tourists sprinkled about, wondering what kind of impression I was giving them of the place.  I knew my window to turn this around was small, I needed to be calm to bring the calm.  I wanted this to work.

Suddenly I became aware of an older gentlemen standing next to us, he'd emerged from the group on a neighbouring bench.  I braced myself for unsolicited advice, criticism, whatever.  It took a moment for my eyes to see what my boy saw in a flash, in his hand he was holding out a candy.  "Only if it's okay with your mom.", he said, his voice friendly, full of the peaceful tones we both needed so badly.

In a blink, the situation changed.  The candy helped Aiden get "unstuck", it pulled him from the whirlpool of the meltdown.  I thanked the man. 

But I could never really thank him enough.  For instead of seeing a child "misbehaving" he decided to see a child who needed a little help.  Instead of seeing a mom who couldn't handle her child, he saw a mom who needed a little help too.

I've been in this situation before, too many times to count over the years.  Sure your skin grows thick, but let me assure you, it is a distinct feeling of aloneness when you are amongst a sea of other people.  Others who don't get it, or who seperate themselves from it.  How do they do this?  Through nasty looks, or caustic indifference.

So thank you kindly gentleman.  For giving my boy and me the benefit of the doubt.  For not being afraid to get involved, for the gentle voice and the candy in your pocket.  Something so simple, and so sweet.

Thursday, June 14, 2012

These Beautiful Things

I remember, 4 years ago, when we were waiting for the autism diagnosis, the conflicting feelings I had. The strange fear that something would be changed about my boy, once this autism label would be attached to him. That somehow I would view him differently, and I guess the fear that other people would too. A word can mean so much. A word can be so scary.

It was around this time that I was wearing out my first Hey Rosetta! CD, hard to believe, but a few years ago we still bought CDs. There was a line from a song that I loved. I gave myself the permission to take it completely out of context, because it was so loaded with meaning for me.

/how can you tell me that these beautiful things are holding me back before I even begin?/

That line expressed my fears and dumbfoundment better than I ever could. I knew the label was coming. But moreso, I knew the autism, the differences were already there. It scared me so much. I can think back on myself as that young(er), first time mom, looking into the rearview mirror one day at the drive thru in Tim Horton's, as that line rang out from the stereo, and I was singing along. And it hit me so hard. How could this beautiful little toddler already have obstacles in his path? Why didn't he get the blank slate all children are supposed to start out with? An endless scape of possibility was supposed to be spread out before him. But I knew, that all of the things that made him so amazing and so awe striking, were going to be the same things that would create challenges for him.

These beautiful things.

It was that day, waiting my turn for the coffee I no doubt desperately needed, as I found myself welling up to the words of that song, although I had sung 1000 times before, that I took my first breathe of acceptance. These beautiful things, no matter what we called them, autism, or spunk, they were still beautiful. I looked back at my yellow haired baby, and spoke words I knew he couldn"t yet understand. "It's okay with me if you have autism, Aiden."

And I meant it.

I am okay with him having autism. I am also okay with the choices we have made as a family aong the way. I have come to love autism, but as my love for it grows, so does my hurt and anger at the way some people still view it. They might not always see the beauty, they can be blinded by the diferences Maybe even blinded by the word. They are what can hold a child with autism back, sometimes more than the autism itself.

The other day, somebody posted on facebook, their child had just been diagnosed. They were looking or advice, I guess, in reality, they were simply reaching out. And I was zoomed back into this snapshot in time, speaking the first words of acceptance to my baby. I guess, if I was honest, I think this story is the best advice I could ever give. It's what I wish somebody had said to me.

If you want your child to find acceptance, be the first to accept them. Accept them, and all of their beautiful things.










Wednesday, May 2, 2012

Learning with Lego

I have been one busy girl lately.  Flat out.  But there is a very good reason for it all.  Let me fill you in.

It all started last year, when I heard about a lady who had started a Lego Social Club.  She started it for her son with Aspergers, and it was a wonderful fit for him.  A great place for him to make friends and work on his social skills, while having fun. 

Upon hearing about her, I thought, Wow, I wish there was something like that around here for Aiden.  It took me time to realize that I could make it available for Aiden, and other children like him.

The Lego Club utilizes Lego-based Social Development Theory.  The children come together and have to collaborate on Lego set building.  Lego building becomes both the incentive and the medium through which they hone their social skills.  They are gently guided to be helpful to one another, communicate with each  other, share with each other and take turns with each other.  But, even more importantly, they are spending time with children their own age,  sharing in play, and feeling a sense of belonging to a club.  What more could we possibly want....

I am so excited.  Finding the right social groups for our kids can be tricky.  You have to decide if your child can handle an activity, if they will participate, if they will actually interact with the others, not to mention whether or not they will have fun.  So, knowing that there will now be a place available for our kids to go, to belong, and to have fun is beyond thrilling to me.

Beyond my excitement, I am experiencing a tiny inner tug of satisfaction and peace.  I feel good about this.  I know I am making something available that will be really meaningful for the children involved.  I know that parents will have a chance to bring their children to a group where they are wanted.  That is all I ever wanted or my own son. 

So, I have been busy.  I am holding registration this upcoming weekend, and cannot wait to meet my new little members!   

 There are still a few spaces available for children aged 5-13.  If you know somebody in the St. John's area who might be interested, they can reach me at legotherapy709@gmail.com

Tuesday, April 10, 2012

Yesterday I Met a Mother

Yesterday I met a mother.
All I feared, she lives.
All of my worst-case-scenarios
are her Monday to Fridays.

And I just can't stop thinking about it.
The thing is, I read about autism a lot, I think about autism a lot.
I worry about autism a lot.
And I identiy with the other parents a lot too.

I cannot help but feel a tug of concern, and a tug of the heart for all of the children on the spectrum.
When I hear of their struggles, or their mistreatment, it stings.
I think of all the things I have wanted to protect my own son from.
And it saddens me to hear from another mom, that the source of the pain comes from professionals.

It is time we rethink bullying.
We spend so much time and effort teaching children not to bully.

It's time we start teaching adults.
How not to use their positions of authority to intimidate and belittle.
How to model respectful treatment of others.

There is a sad reality that parents of exceptional children are forced to come to terms with.  It is a universially shared experience, but one that might catch you by surprise.  Not all of the professionals whose help you seek will be helpful.  Not all of the supports will be supportive.  Sometimes it is the people who are supoossed to be assisting you on your journey who end up hurting you the most.

Be selective, shop around. 
Find the people who are passionate about their careers.  Who are not just good at their jobs, but kind and good.

Because yesterday I met a mother.  And I think she needs to keep looking.

Sunday, April 1, 2012

1 in 88

Okay, here we go again.

Since the new autism prevalance stats came out from the CDC the other day, I have been struggling with how to write about it.

This is now my third attempt, and I am really hoping that I will get it right this time.

I am stuck here, I know how the numbers makes me feel, but I'm not sure I can express it properly.

First, I have to be clear.  In my house, autism is celebrated.  It is celebrated and welcome.  While I certainly wish my boy had it easier, I do not in any way wish him any diferent than how he is.  Because he is perfect.  Perfection.  Lovely.

So it is hard for me to want to caution everyone about an epidemic, because to me, autism is not a tragedy.

But, it is extrodinarily challenging at times.  It doesn't only affect the person with autism, but the family that surrounds them as well.  Autism in the house means that you have to make some tough choices, have clear goals, a life-long dedication to learning and helping, and a very, very thick skin.  Autism is not for the weak.

And this is where I struggle.  I want everyone to embrace autism in this world as valid and good.  I want everyone to appreciate the beauty and genius that are part of autism.

But truthfully that isn't enough.  I know that.

Tomorrow is World Autism Awareness Day, and we go into it with this new statistic in mind.
When you see houses and buildings shining blue lights for autism tomorrow night, or when you see our awareness ribbon, or even our balloon release, I want you all to think, 1 in 88.  And then I would like you to look beyond the numbers, and to think about the many ways people are affected.

The people who have sensory systems that make the world overwhelming.
The mothers who will never hear their children speak.
The fear and worry that keeps a parent up at night.
Families paying for therapies and services.
Seeing your child for all that they are, while others can't see past their label.
Waitlists.
Phone calls.
Follow-up phone calls.
Team meetings.
Trying to find activities that your child can participate in, and enjoy.
Trying to find a work placement for your adult child.
Underemployment.
Dealing with rude people in public.
Finding clothes your child will actually wear.
Walking on egg shells.
Keeping your fingers crossed.
Feeing overwhelmed and blessed all at once.

Think about the 1 in 88 families who want to find acceptance, and 1 in 88 people who need it.

I know this post still isn't right.  I guess I just want you to know that these numbers are rising, so even if autism isn't touching your life yet, please know that it will.  Don't be afraid of it, see it for its good, and recognize the struggles of those who are working with it already.

Support us, and we will support you too. 
Learn all that you can about it, so that you can be the face of understanding that we're all looking or.

Monday, March 12, 2012

Snow Day Every Day

Last week saw a blizzard rip through town, causing all of the metro schools to close for the day.  In our world, snow days don't really exist.  We have the occassional "didn't sleep the night before" day, or "don't even bother trying" day, but the actual weather doesn't actually affect our work schedule at all. 

But sometimes you don't appreciate what you have until you see what others don't have.  This last snow day, many parents had the opportunity to spend the day with their little on a typical work or school day, right smack dab in the middle of the week.  Friends rejoiced in the ability to sit down to a nice warm breakfast together, and to hang out at home all day, the city too blustery to lead them out the door.

And I felt blessed.  Like a really lucky girl.

Because everyday I sit and eat breakfast with my children. I make them a nice warm lunch every afternoon.  I get to experience first hand the joys of watching them learn (and somedays the frustrations too!)  

I get to listen in on their play, even if at times I have to rip them apart. 

I don't have to miss them.  I don't have to wonder how they're doing.  I don't have to worry about what they're hearing elsewhere. 

In the blink of an eye, their childhood days will be but a memory.  It's hard for me to believe that now, but I know it to be true.  I feel so content to spend these days with them.  The good days and the hard days, because when you smoosh them all together, it's their childhood.

And I feel beyond grateful.  Because everyday is a snow day.

Wednesday, February 8, 2012

There's Something Fishy Going on Here

Bullying is all over the local media here this week.  It's all because of an incident that occured in rural Newfoundland.  If you don't want to read the article, or if you haven't already heard, a 10 year old boy went home to lunch, and came back to class smelling of the fish he'd been lovingly served at home.  Apparantly his classmates objected to the fishy fragrance and began tormenting him about the smell.  But this isn't the part that has people talking.

It was the boy's teachers actions that have caused the debate.  After removing the child from the room, she then went on to spray the boy with Febreeze.  When the boy returned home at the end of the day, he told his mom what had happened to him, contacted the media and ka-boom, we've got ourselves a story.

But I think we've got ourselves the wrong story. 

People have been weighing on in whether or not the teacher's actions were right or wrong, Whether it was a case of good intentions and poor decision-making mangled together, or simply just an insensitive action. 

But I haven't heard anyone look at the bigger issue, that when a child is being bullied, straight away we run to "fix" whatever it is that is gaining them the negative attention of their peers.  By attempting to irradicate the odor on the student, we are somehow giving justifiction to the students who were so offended by it in the first place. 

Because let's face it, kids don't get bullied about things like being beautiul, or fitting in too well.  Kids who bully hone in on whatever it is that is making a child stand out.  It might be a fishy smell, it might be a big nose, a stutter, or a developmental delay.  None of these things can be fixed with a quick spray of Febreeze, no matter how grand it makes you smell.

So how about we stop trying to make our kids blend in, stop making them smell as sweet as their friends who nibbled ham and cheese sandwiches for lunch.  Instead of working on the kids who are already targeted by their peers, let's work on the kids who are so quick to pick out someone's faults, or so quick to join in the laughter.

Because then we're teaching acceptance.  And tolerance.
And that smells pretty good to me.

Friday, January 20, 2012

A Rose by Any Other Name

The autism community is abuzz about this article from the NY Times today. 

Basically, a narrowing of what it means to have autism is being proposed.  Many who currently fall onto the autism spectrum due to their diagnosis of Asperger's or PDD-NOS could find themselves excluded.  The new criteria would greatly reduce the rate of autism, the "epidemic" would come to an end.

My child has officially had autism for three years now, but if these changes go through, he may no longer fit the bill.

My boy will remain the same boy he is now, nothing but the label would change.

But there is a lot more at stake here than a war of words.  We would lose our solidarity.  Being part of the autism community means something.  It means you know where to go to seek support or understanding.  It allows you to understand better your family member, your loved one, or even yourself.  For many, stripping away the label may mean a loss of services, supports, or understaning. 

Taking the label from a person will not strip them of their disability.

Taking away their access to services will not strip them from their needs.

Autism is real.  The surge of autism is real.  The needs of this group of individuals and their families are very real too.  Changing the criteria is not going to change reality.

Has the medical community lost hope?  Trying to diminish the truth of autism and its prevalance seems to me akin to sticking their head in the sand.  They`re confused by it, it is an enigma, but changing around words to make the √¨ssues seem less than they are isn`t going to change anything.

Accept it, we have.