Posts Tagged "little victories"

Facing Our Fears

Posted by on Sep 15, 2014 | 2 comments

Facing Our Fears

I’ve been away for a bit. I’ve been in a self-made cocoon of sorts, waiting for the right time to reveal my “new” self.

Or the self I’ve always been, but didn’t really know it.

Anyway, I’ve been thinking on the best way to start the conversation here. This place that I’ve built to laugh and cry, and bemoan, and celebrate autism in our family. This place that has become a safe haven for me and others, a place where it’s OK to be our true selves, autism, warts, and all.

I thought for a while that I needed to bring platitudes and great revelations. That I needed to be profound.

And as I sat, cozy and safe in my self-imposed little box, it came to me.

Rather, Jack came to me.

Jack has been my teacher on so many levels, and I should have known this would be no different.

A couple of weeks ago, we went to a small amusement park and a big water slide park on the same day. We don’t do amusement parks, as a rule, for a few different reasons: Money, crowds, autism, crowds, crazy children, lines, money, and, of course, crowds. The kids have been on a few rides here and there (most recently the Great Wheel in Seattle), but we haven’t done a full-fledged amusement park since Disneyland years ago when the kids were small.

The only water slides my kids have encountered have been the small ones at a downtown spray park, and the slide at our local pool (not small by any means, but not theme-park-sized).

I was worried how Jack would do on the rides, since he really seemed to hate them when he was younger. I also didn’t know how he would react to the water-slides, as you can’t exactly avoid being splashed in the face or dunked underwater.

To our relief, the amusement park was both quite small and fairly empty. The kids didn’t have to wait in line for anything. It was like an Autism Miracle.

He handled it all. Really well. By himself.

For instance, he did this:

boats

He both shot his brother in the face, and took many hits in return. All with a big grin.

He did this:
swings

 

This one amazed me. Jack HATED swings as a baby and small child. It took about two full years of occupational therapy to get him to not only ride a swing, but enjoy it. Now he’s a swinging fool.

He did this:

 

balloons

This ride made my husband ill just looking at it. They’re up there spinning around, while spinning around. Like teacups up in the air.

 

And then he did this:

bucking bronco

If you can’t tell from the photos, this little ride here is like a carousel on acid. You sit on a horse, and the platform starts to rotate. Then, the whole thing rises up one side of an arc, then down and up the other side. All while the platform is still rotating. Like someone thought the pirate ship that goes back and forth is a little too tame, and the carousel is just not dangerous enough.

So yeah, he rode that thing. Smiling.

We headed to the water slides, and Jack took off alone. I was worried about him, but figured he’d end up entertaining himself in the splash areas or pools.

Toward the end of our visit, my child ran up to me, dripping wet.

He had done this:

waterslide

 

 

FIVE TIMES.

He was so excited to tell me. “Mom! I really conquered my fears today!”

And then he ran off to do it again.

I realize now that I haven’t been hiding in contemplation so much as in fear. I’ve been afraid. This post changes everything for me, but it’s time. If my child, who has come so very far in his almost-nine years of life, can stand up to his own fears and break through to the brighter side, so can I. And I will, for him.

This is my vertical drop.

So, here goes.

My name is Wendy, and I have Asperger’s.

I am autistic.

And I am happy.

 

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Guess What? I Have Autism!

Posted by on Aug 5, 2013 | 2 comments

Guess What? I Have Autism!

“Hi! I’m Jack. I have autism.”

A sentence I wasn’t sure I was ready to hear. Yet, so pleased to see it exclaimed loudly and proudly.

Two weeks ago my husband David and I told Jack he has autism for the very first time. We’ve never hidden anything from him, we just wanted to wait until we were certain he’d be able to understand the gravity of it all to address it directly.

We discussed it for months in advance, tried to plan out what we wanted to say. And what we didn’t want to say. We decided to wait until the summer, so he would have time to adjust to his new reality unfettered by school stresses. We looked at books, we asked what others had told their children.

Summer came and we still waited. For the right time, the right place, the right… whatever.  We finally decided to take him out to lunch alone, where we could have a conversation without his brothers drawing focus. It would be perfect.

And we all know the best laid plans always go according to, well, plan.

The days passed and still no discussion, no lunch date. Then one day we were all sitting around the kitchen table doing arts and crafts and what-have-you. I looked at David, he looked at me and shrugged. It just seemed like a good time.

“Jack, do you know what autism is?”

He wasn’t sure, so we expanded on some things he already knew: people have different likes and dislikes, people don’t all look the same, people think differently.

That’s been a recurring theme in our family for years. Whenever one of the children asks why someone is a certain way, or why somebody likes something they don’t, or any time something is not the same as what they know, we say it.

“People’s lives are different.”

We knew someday Jack (or his brothers) would realize that he’s not like most of the other kids, and we wanted him to know that different is not wrong. It’s not strange. It’s not weird or funny or less than. Different is just different.

We described the spectrum, and how all people who have autism fit somewhere on it, but are not the same. That even within the autism community there are differences, and that’s OK.

We told him that autism is why sometimes sounds are too loud and lights are too bright and the Titan AE theme song drives him nuts (although to be fair, it’s really annoying). Autism is why he has a helper at school, and why he needs to run around in the halls periodically. It’s why he takes melatonin to sleep at night.

It’s also why he wants to know everything about every subject that interests him, and wants to share it all with anyone within earshot. It’s not why he’s curious, but it’s probably why he’s curiouser.

So when we said the words “you have autism” to Jack, and explained what we meant, he wasn’t upset. He wasn’t scared or troubled in any way. He was quite the opposite.

I’m pretty certain Jack believes he has some sort of super powers.

Which, of course, he does. Duh.

So, without further ado, Jack’s thoughts on autism.

On the concept of a spectrum, and where he falls on it (we told him he started in the middle, and now he’s toward the high-functioning end):

“It’s hard to read if you’re in the middle of the spectrum. You just have to show your parents the words.”

“If you’re way past schedule on learning, nothing will stop you from learning again and again and again to get to the other end of the spectrum.”

Jack does understand that not everyone can move from one end to the other, although his main concern about those individuals is that they may not be able to have sex properly to have children. He’s quite interested in the mechanics of having babies at the moment.

I’m certain he’ll have more to say on the non-sex aspect at a later date.

On the fact that he was born prematurely, and how that may have contributed to his autism (his correlation, not ours):

“If you’re early (premature) you have a lot more time to learn. If you’re past schedule (post-dates, like his brothers), you don’t have as much time to learn.”

So, according to Jack, he’s got one up on his brothers because he was born six weeks premature.

On early intervention (he started services when he was 23 months old), and the important role parents have in the therapy process:

“You (parents) helped me learn. You also brought someone else over to help teach me to learn.”

“It’s all because of my parents that other people came and taught me. So parents do help out with learning, not just school and other classes. Mostly parents. But mostly school.”

Um, thanks?

“And you learn mostly everything at university.”

OK then.

Some random thoughts on autism:

“I couldn’t walk when I was born, and it’s because of the spectrum.”

Hm, probably not the case.

“I know how to read, so I’m really good at autism.”

I guess so?

We finished up by asking him how he felt now that he knows about autism. Turns out, he thinks it’s pretty cool.

“I think that having autism is great. Of course, what do you know?”

Not much, apparently.

“Do you like autism a lot?”

Yes, yes I do, in fact.

“Well, thank you!”

You’re quite welcome, little man, it’s been my pleasure.

When his aunt and cousins came over later in the day, he ran up to them and gleefully exclaimed, “guess what?!? I have autism!”

Let the celebrations begin.

And, as is his wont, Jack summed up autism in the most eloquent way possible. From the mouths of babes and all, words of wisdom:

“I think it (autism) helps me want to do lots of things. It’s great for the mind, because it can help you do lots of things.”

And finally:

“Some people (with autism) can’t talk – it’s not about your voice, it’s about your mind.”

I couldn’t have said it better myself.

 

voice mind 2

 

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Next up in this series – what Jack’s brothers have to say about autism.

 

 

 

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Vindication… and Obligation

Posted by on May 25, 2012 | 1 comment

Vindication… and Obligation

It’s over.  Our long journey for a Canadian autism diagnosis has ended, and we are victorious.

So why am I so tired?

We went to our family diagnosis and funding meeting this week, girding ourselves for any outcome.  I wasn’t hiding my nerves well, so the wonderful doctor let us off the hook immediately.  Jack is on the spectrum, he has ASD.  We knew that, but there were no guarantees the team would agree.  Thankfully, they did, and now Jack is eligible for all the support that Canada and the British Columbian government have to offer.*

After she presented the official diagnosis, we met with a case worker who explained the funding process, and where to go now.  Unlike in California, where either the school district or the regional centers handled coordination of services, we will make most of the decisions ourselves.  It’s a bit confusing, but I’m glad we have a lot of experience in the autism world to guide us.

We sat in the car afterward, letting it all sink in.  I felt relief, I felt happiness… and I felt a weight bearing down on me.  My husband and I looked at each other.  We were both thinking the same thing.

Jack is special.  Jack has always gotten exactly what he’s needed, and then some.  But other children are special, too.  Our monumental task is over, but our – my – biggest job is just beginning.

Since Jack was diagnosed, before even, he has had the full support of everyone charged with his care.  We call him the “poster child for early intervention”, and it really is quite true.  Every step of the way, he’s had exactly the therapy he’s needed, the support he’s required, and the attention he’s deserved.  Here in BC, where his school has not yet received a penny for his support during the year and a half we’ve waited for his diagnosis, Jack has had a full-time special education assistant (SEA).**  Even though we have occasionally had to wait, Jack still prevails in the end.

I know many, many families in the autism community, and their stories are all different.  There are children who are lower functioning, there are children who are high functioning.  There are children with asperger’s, and children with PDD.  The spectrum is wide, and so are the services they’re receiving.  I would love to say every child is getting exactly what they need, but that simply isn’t true.

I know children who are not supported in school, and children who have had to leave school because of it.  I know children who need speech therapy or occupational therapy or sensory integration therapy, but linger on waitlists or are simply denied due to lack of funding.  I know children who have waited years for an accurate diagnosis, without which they cannot even get on those waitlists.

I won’t say we’ve had an embarrassment of riches when it comes to Jack’s therapies, interventions and supports, as he’s needed and deserved every one.  But that feeling lingers when I speak with parents so desperate for even a fraction of what we’ve had.  It pulls at my heart and puts a fire in my gut.

The weight I feel is obligation.  I cannot allow my fight to end with Jack.  He is my child and it’s my duty to advocate for him, but someone needs to stand up and speak for those who are not as fortunate, for whatever reason.  Autism is many things: daunting, confusing, challenging, and oftentimes inspiring.  What autism need never be, though, is a tragedy.  Every single child and individual on the spectrum deserves the chance to be the best they can possibly be, through therapies, interventions, supports, or whatever it takes. Every family touched by autism deserves to know they’re not alone on their journey.

Jack and I have completed this leg in our marathon, and we have every intention of winning the whole thing.  We also intend to take as many with us as we are able.  We can, and we will.

Swinging into the future...

 

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”
Eleanor Roosevelt,

**************************************

*Which isn’t a whole lot, honestly, but that’s another topic for another post.

**I was quite pleased to take in his diagnosis paperwork yesterday, which will now entitle his school to $18,000 a year specifically for his support.

 

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Guest Post: Off The Top

Posted by on Feb 2, 2012 | 0 comments

Guest Post: Off The Top

Today’s post is by Jeff Stimpson, a fellow autism blogger who appreciates the humor on our journey. 

Off the Top

When my 13-year-old son Alex was a toddler, we took him to a toddlers’ place for haircuts: flat plastic cars to sit in, sweet female stylists, toys, Elmo on the VCR in front of him while he got a little off the top. They understood there for a long time, even as Alex’s legs grew too long for the plastic cars and a thin brown line appeared along his upper lip. “Alex, how are you!?” they’d want to know, their assistants who handled the aprons and the changing of the VCR tapes hovering nearby. I would hover with toys. “Alex, be good for a cut and you can have this.”
 
They were nice. They were pricey: $35 for a boy’s cut, plus the toys ($5 or so) plus tips for the stylists and their assistants. It hardly seemed fair that Alex (PDD-NOS) got the fun toddlers’ place for cuts and Ned, his typically-developing younger brother, didn’t, at least for a while, so the bill for the two boys sometimes near seventy bucks.
 
My wife Jill tried trimming Alex’s hair a few times, but though she likes to think of herself as a home barber she’s been clipper-shy ever since a decade ago when she buzzed me while watching, for some reason, The Shining (Her: Christ I forgot this part!! Me: Jill my ear!) Then we tried a lady who came to our house and claimed to have experience with cutting the hair of children with autism. She was good; Jill didn’t like the cut.
 
Off to barbers. It was easy with Ned, whose first haircut was in a wood-paneled joint where the barber had to put down his Racing Forum first. With Alex we had to try a joint of Italians, another of Russians (barber shops tend to run by ethnic groups in New York). Alex twisted at the buzz of the clippers, twisted at the snip of the scissors or the swish of the apron. The languages were different but the message universal: I can’t cut his hair if he won’t sit still.
 
The search was on. There are maybe a half dozen shops within a 20-minute walk, and one of these is Mr. Lucky’s European Styles. A slit of a place, padded chairs, photos of models with the cuts you can request, stylists’ cards in front of their mirrors. I noticed the teenager who had to be lifted into the barber’s chair from a wheelchair. The barber didn’t pause a second before going to work on the young man, whose head lolled as he dropped a basketball; it bounced to me and I passed it back to his father, who looked tired, and I got the feeling I’d found something.
 
“What’s his name?” the barber asked me at Alex’s turn to climb into the chair. “What’s his name? Okay Alex, sit still. Sit still. We’ll be done in second.”
 
He snapped the apron over Alex and cut around the ears and up the back. Scoop with the fingers and clip clip across the top. The dark inches tumbled down Alex’s apron and I thought, This barber knows someone with this.
 
“Alex, look in the mirror. Straight into the mirror, Alex.” And Alex does. I hover and dart around the chair, trying to not get in the barber’s way. Ned tells me to show Alex his toys and tell him to sit still, but I think maybe the toys aren’t needed. “Alex, sit still. Sit still.” He does. In what seems like a moment, they whip the apron off and ask me to pay about what I pay to have my own hair cut.



Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

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A Christmas Miracle

Posted by on Jan 19, 2012 | 1 comment

A Christmas Miracle

Somewhere along the line this year, Jack started disliking Santa.  Oh, he loves the man and the gifts he brings, but as December rolled around, Jack made it clear he wouldn’t be sitting on the Big Man’s lap, and there would be no photo for the mantle this year.

I have to confess, I’m most likely responsible for Jack’s trepidation.

In late September, before we had even begun to talk about Jack’s birthday or Halloween (our favourite October events), it happened.  My boys pulled out their Polar Express DVD and started the countdown to Christmas.  I didn’t discourage them much, as I have a deep and abiding passion for Christmas and all the pageantry it entails.  I did insist on doing all of our traditional October things like picking apples, decorating pumpkins and the like, but it didn’t take long after each activity for their attentions to turn back to Santa.

One night, as we were looking for books to read before bed, I was quite upset to find that one of their favourites had been ripped to shreds.  Actually, its pages had been turned into paper airplanes.  We really love our books in this house, and I was beside myself.  I decided they needed to learn a lesson in consequence.

I told my big boys that in order for Santa to bring them shiny new toys this year, they’d have to apologize.  They needed to write him a letter, in advance of the traditional “I want” missive, explaining that not only had they shredded some books, but that yes, they’d used their special Polar Express train set outside in the mud (it was not, surprisingly, mud-proof), and that they were sorry.  I told them Santa wouldn’t bring them nice new things if he thought they would be treated badly, and an apology was in order.

Lennon didn’t like it, but he understood.  Jack argued points with me (he did not take part in the book destruction, so he felt he only needed to cop to the train wreck), but finally understood if he wanted new loot, he needed to come clean.

I felt good after that discussion, happy that my children might have actually learned responsibility and culpability.  They did, sort of.  What Jack learned, though, was that Santa has a bit of an attitude, and he wanted nothing to do with it.  He started to tell me how he would write his letter, but he wouldn’t go see Santa.  Not even for a second, no way.

I didn’t push him. If I’ve learned anything in the six-plus years of living with Jack, it’s that if he says he doesn’t want to do something, he means it.  We went to Sea World once, after a week of three-year-old Jack telling anyone who’d listen that he did not, in fact, want to go.  He didn’t want to see sharks or dolphins or whales.  He didn’t care about the turtles.  He did not want to go, period.  We assumed that once we got there he’d change his tune, as he adores sea life, but lo and behold, he stuck to his guns.  We did not get to see sharks or dolphins, and he summarily dismissed the huge killer whale swimming right past him.  It was the fastest trip to Sea World in recorded history.

Boring

So when Jack said no to Santa, I figured that was that.  Last year’s trip to see Santa was a debacle, since the whole family had been sick with the flu the entire month leading up to Christmas.  We finally got to see him at the little mall near us one night while we were out, on a whim, looking at decorations.  The boys were in their jammies, and the hurried photo we got reflected the moods of everyone involved (even poor Saint Nick, who was minutes away from quitting time and bombarded by a load of sick kids in pajamas). In search of a better experience this year, we packed everyone up and went into the city to the VanDusen Botanical Garden’s Festival of Lights.

Seeing the light

We enjoyed a spectacle of lights, music, Swedish waffles and fun.  As we neared Santa’s cottage, Jack started his dialogue of how he wouldn’t be participating, lest we had forgotten his endless lecture during the hour-long car ride to get there.  I took the younger kids in, and Jack watched through the windows.  For about ten seconds.  Then he was hooked.

The Santa experience at VanDusen was like nothing we expected.  Santa had his own little cottage (which they called his “living room”), separate from all the hustle and bustle of the botanical gardens. He sat on his big, comfy chair nestled between a fireplace and a beautiful Christmas tree, in front of three rows of benches.  Families sat and waited to chat with him, or just enjoyed the quiet coziness. There was no professional photographer, no cameras at all other than those in the hands of grinning parents and grandparents. Santa took his time with each child, asking them questions about their likes and dislikes, their thoughts on the world, and yes, eventually, what they would like for Christmas.  He invited them onto his lap if they were comfortable, let them sit next to him if they were not.  He smiled, laughed, and exuded absolute joy.

Deep in discussion

It didn’t take long for Jack to assess the situation and change his mind about meeting Santa.  He responded wholly to the calm and quiet, and wanted in.  As we waited our turn, I watched the excitement grow on his face, his love of Santa overcoming the fears he’d built up in his head.

Jack and Santa discussed the fireplace, the lights, and several other things before Jack finally expressed his desire for a book about airplanes.  Jack climbed up next to him and I took the best photos I have ever gotten of Jack and Santa.  In fact, the photos I took of the three boys and Santa are, hands down, our best Santa photos to date.  There is joy on their faces, all four of them.

Team Baskin with Santa. Joy all around.

As we left the little cottage, Jack couldn’t contain himself.  “It was a big mistake telling you I was afraid!”  He was giddy with pride.  Then he was serious. “Santa loves children all the way to the bottom of the world because he lives on the top of the world.”

Yes, Santa loves all of the children.  Even if they tear up books or destroy their Christmas trains in the summer mud.  Santa loves the children who are brave, and those who are not.  Santa loves the children who can tell him what they want, and those who cannot. Santa loves equally, always.

I will never forget this visit with Santa, and we will go see him in his little living room next year. And the year after that.  I hope he knows how much he is appreciated, by the parents as much as the children.

"Dear Santa, Thanks for making my stuff. From, Jack"

 

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