Wednesday, August 31, 2011

Autism vs Esme

Autism is developmental disorder that appears in the first 3 years of life, and affects the brain's normal development.

Autism is a physical condition linked to abnormal biology and chemistry in the brain.

Autism is bell-curves, splinter skills, behaviors and variability and abnormality.

Autism is tantrums, disrupted sleep, anxiety and fear.

Autism is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior.

Autism is consuming, complex, scary and confusing.

But Autism is not Esme.

Esme is triumphant.

Esme is joy.

Esme is silly.

Esme is a daughter, a sister, a granddaughter, a cousin, a friend.

She is our love, our pride, our joy, our hero.

Esme is not a tragedy.  She does not need your pity or sorrow.  She needs your understanding.  Esme lives with autism, but she is not autism.
See the difference?

Tuesday, August 30, 2011

These days...

None of us remembers these, the days
When passing strangers adored us at first sight
Just for living, or for rolling down the street.
Praised all our given names, begged us to smile.
You, too, in a little while, my darling,
Will have lost all this, asked for a kiss will give one,
And learn how love dooms one to earn love
Once we can speak of it.

Mary Jo Salter

Sunday, August 28, 2011

Taking Autism to African Lion Safari - an Accessibility Review

African Lion Safari

Price / Discounts
The cost for our day at A.L.S. was pretty steep; just under $100 for 3 tickets (children under 3 are free).  We got our tickets at CAA with a 10% discount, but we heard that Costco has an even better deal, if you are a member there.  I found out later that African Lion Safari extends a 25% discount on admission to people with disabilities and, if required, one accompanying support worker.  Awesome, African Lion Safari!  We will take advantage of this deal next time!  Also, it is easy to go to and from your car and there are lots of picnic areas available, so bring a picnic and saving some money on food is no problem. 

As far as physical accessibility, African Lion Safari was not too bad.  We didn’t have a problem getting around with our stroller; there were wide, well paved walk-ways.  The splash pad was accessible, with a 0 depth entry, and had lots of sprinklers at different heights to play in; People of all ages from baby to adult were using and enjoying this area.  The water “playground” for older children was not accessible. 
The train ride was not wheelchair accessible, and the “conductor” does narrate a tour over a loudspeaker for the entire ride.  Esme plugged her ears.  If you have train-enthusiasts who are sensitive to noise, you might want to bring the ear-plugs for this one!  The wait for the train ride was not too bad – about 20 minutes – and really it was the only time we waited for anything all day.  

A.L.S. is pretty old fashioned when it comes to its attractions.  Pony rides, a boat and a train ride, small playgrounds and a petting zoo top the list of things to do in the park.  The playgrounds were totally not accessible (they have been the same since I went to the safari in Grade 2.  I seriously don’t think they have ever changed the balls in the ball pit.  They are down to about 7 balls.), but the under 5 playground was totally fenced in.  A bonus if you have more than one little one with you, or have someone who likes to run!  It was also nice to have some activities that didn’t involve waiting or big stimulating noises.  Sometimes a good, old fashioned swing is just the thing.  

The safari portion of the park has wheelchair accessible buses (we weren’t in one, so I couldn’t see how it was) for the safari tour, but you can also use your own car, which is nice if you have excited kids who feel more comfortable in a familiar vehicle.
Even though there were a lot of people at A.L.S (it was a Saturday), it never seemed too crowded.  The playground areas were almost empty, and there was a lot of open space for Esme to run around and chase seagulls.  And elephants.

Overall impressions

We had a great time!  We were at the park from 10:30 am until 6:00 pm and didn’t do even half of the activities they had.  Even though it’s a small attraction, it was just the right speed for our kids. 

The safari was fun, but I think Esme would have preferred being in our own car.  She was anxious on the bus, but held it together very well.  She was bored and hungry by the end, and I was using all my self-control not to scream “Who cares about the goats!  Just drive!” at the bus driver.  But we made it  The baboons and the big lion were the highlight of the safari.  

Getting Esme-friendly food is always a challenge when we go out, so it was awesome that we could bring a picnic.  It was also nice to take a break and climb a tree.  Trust me, Esme was ready for lunch.  Seriously ready. 
Esme loved the splash pad so much (we easily could have spent the whole day there, it was by far the highlight of her trip).  Haven had lots of fun crawling around the exploring the sprinklers. 

The petting zoo was quiet, with lots of baby goats to pet.  Haven loved looking at the llamas.  Or alpacas.  I’m not sure what they were.  But according to Haven, they were hilarious!

A.L.S could really use some new playground equipment, especially some accessible stuff.  The park is laid out really well for people who use adaptive equipment, but the lack of accessibility in the park area and the train is kind of a let-down.  I found the park to be very autism-accessible – there wasn’t any piped in music, there wasn’t a lot of over stimulating things around, and there was a lot of space so it didn’t seem too crowded.  The atmosphere is pretty relaxed, which is a bonus for anyone with anxiety issues. 

Overall, we would give African Lion Safari a B+.  The park was pretty autism-accessible, and gets extra points for offering a discount to people with disabilities.  While the main attractions were wheelchair accessible, the park could update some of their smaller “attractions” to make sure that all children can enjoy them.  And seriously, I think some of that stuff is due to be replaced.  I am not kidding when I say I have a picture of me on that climber circa 1988. 

 Overall, a great place to visit… if you can handle the admission price!

Thursday, August 25, 2011

RDI - Relationship Development Intervention

What kind of therapy do we do with Esme?  

Well, we do lots of things.  Most of the things we do are the same things anyone does with their kids.  We play, we cook, we jump rope and chase her around the house, we teach her to do chores like make her bed and tidy her toys.  It really looks like we are just interacting with her the way you would any child.


Everything we do with Esme is very intentional.  We had to re-train ourselves to parent her the way she needed to be parented.  We did this using RDI or Relationship Development Intervention.  RDI is a therapy protocol for children or adults with ASD.  There is no “too early” or “too late” – in fact, we use a lot of the stuff we learned in Esme’s RDI program when we interact with Haven.

So what is RDI?  I once tried to explain it to someone and after around 30 minutes I think I actually saw them start to nod off.  The theory behind it is very complicated.  And really very simple.

The way we think of RDI is this; RDI teaches Esme how to learn from us, her parents. 


It teaches her to want our approval, to seek our opinions, to use us as a guide for navigating her world.  It teaches her to be less isolated and more dependant so that she can learn and move from dependence to independence – the way any other child would.  Autism made her stop seeing the world as a place full of interesting things to learn and do and made her see it as a place full of scary, unpredictable things to run away from.  Autism stopped her from developing the ability to use her parents and other adults as guides to deal with the world; she didn’t know when she was safe and when she was in trouble, clearly very little made sense to her.  With no coping mechanism to deal with the scary and confusing world around her, she continued to turn inward, shutting herself off from the world and coping with dynamic situations by controlling them (I have never met a child with autism who couldn’t take control of any situation at any time – either by acting out or by shutting down.)

RDI has taught Esme that she can use Cameron and I to show her how to navigate the world.  She looks to us for information, approval and reassurance.  She is understanding how to calm herself without stimming and controlling.  She is learning what we think is important in the world and paying attention to it.

Without working on speech, she has started talking.

Without working on behavior, she has stopped having as many tantrums.

Without working on sensory stuff, she has stopped stimming.

Her development is “normalizing”.  She is happy and secure. 

Is it a lot of work?  Yes, but you wouldn’t know it by looking at us.  RDI is a way of life, and once you know it, everything you do is another opportunity to teach.  What looks like making a cake or doing the dishes is actually therapy around here.

So what is RDI?  It is our families path out of the fear of autism and back to the joy!

Wednesday, August 24, 2011

Leaving it

It rained on our morning walk today.  A lot.  We had one umbrella with us, which the princess NEEDED to use, because “Mommy it’s raaaaaaining!!!!”  She ditched her jacket (her rain coat lost in dad's car, or somewhere in our piles of stuff – errr, house), so I juggled pushing bro’s stroller, covering him with the abandoned jacket, carrying an open bag of pencil crayons and paper and a diaper bag thrown over my shoulder, all the while singing happy songs to a slightly-less-than-happy 8 month old. 

The afternoon library trip was a bit hairy.  Anxiety attack over who knows what lead to a screaming tantrum, the throwing of few toy cars and movies, and more than a few questionable looks from library patrons, which in turn lead to one busy mom and way too many movie-and-tv-show themed books being carted home. 

Sister spent a lot of time on her ipad this afternoon.  I mean a lot of time.

She loved it.

We learned (again) that pens are not for couches.

A tidy up was started...

and subsequently abandoned with a well-timed “Mommy, I’m awake!” cry.

 He knows who the boss is around here.

But the rain has stopped.

The sun is shining.

The mess and the penned up couch and the tantrums and piles of stuff can wait.

Because seriously?  When did she get so big?  And how is he 8 months old tomorrow?  And how is September on our doorstep already?  It’s a "throw some fries in the oven and beans in a pot" kind of dinner tonight.  The backyard is calling. 

Who knows, we might just attempt that walk again


Tuesday, August 23, 2011

The thing about autism

Want to know the most wonderful thing about autism? The victories.

Your child smiles at you? Asks for something? Says hello to a friend? Sits nicely at the dinner table? Plays with a friend? Looks at you for approval? Brushes their teeth on their own? Asks how your day was?

Sister, that’s a victory right there.

Your daughter spells her name for the first time? Your son is invited to a birthday party? Your 10 year old is finally out of diapers? Your 3 year old makes it through the day without biting? You get a first word, or a first sign, or a first point from your 15 year old? Your 4 year old puts 2 words together? You eat out at a restaurant without an issue? You get a smile? A hug? An “I love you too Mommy”?


Our victories may look different than your average kid’s. Colouring on the walls (She picked up a marker, opened it and did something with it!). Victory. Unrolling a whole role of toilet paper (He is interacting with stuff! Hurray!) Victory. They may come later. They may come with a lot more blood, sweat and tears. Sometimes with a lot more tears.

But when they come?

Watch out.

Autism, schmautism. We are all about victories these days.

Our girl is talking. She is playing with friends. She is kind to her brother. She is telling us when she is overwhelmed and upset. She is managing her anxiety and compulsions. She is telling jokes and cleaning her room and dressing up and pretending and planning her birthday party and asking to take ballet lessons and talking on the phone and playing with her brother. And all those “maybe she will never’s”?

Out the window.

Because we are on a roll over here.

And victory?

It’s doubly sweet.