Welcome to Holland

This really does say it best on what life is like in the world of autism.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

 

In Your Face, Autism #YMCCommunity

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The blood is racing through my body to the point I think it is going to burst my veins. My hands grip the shopping cart handle as I whisk us away from the older man. I feel light, euphoric even.  Surreal does not even begin to describe it. For once, I said the right thing at the right time.

Minutes ago my four-year-old raced ahead of me in the grocery aisle. She accidently bumped an older gentleman’s basket. He was not hurt at all. I caught up to her as she raised her arms to indicate for me to pick her up. I scoop her into the cart. The man that she bumped came up beside me and grumbled that those kids should not be contained but punished for what she did.

Without taking a breath I looked at him and said, “ Did someone teach you to be an asshole or does it come naturally?”

Walking away, I am stunned at what I said. For years since my youngest was diagnosed, I bit my tongue when ignorant comments or unsolicited advice would be dropped in front of me. I am not trying to be on a soapbox and make everyone be aware of autism and it’s many gifts and challenges.  All I ask is that she be given the same respect as others expect her to give them.

I do not swear or call people bad names very often. I want to show my kids that mom does use her words. In this case, I do not regret standing up for my kid, who doesn’t know how do that for herself. Ironically, I did not see that man as we finish our shopping. I pack up the car and buckle her in. She gives me a big kiss and hug. Her direct eye contact is a new gift. Maybe she knew what happened just now and she is thanking me in her way. Never mess with a Mama Bear. In your face, Autism.

 

Thank you Julie Cole for leading the way.

Reads for Parents about Autism

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The Out-of- Sync Child

Recognizing and Coping with Sensory Processing Disorder

by Carol Kranowitz, M.A.
Before my youngest daughter was diagnosed years with autism I was overwhelmed with all of the  books offering advice.  This book helps break down what you can do for your child who might not be on the spectrum but exhibit sensory overload. What really caught my eye was that all of them approaches that are mentioned in the book are drug-free. This is a book for my reference shelf.

The Golden Hat

Taking Back Autism

By Kate Winslet, Margret Ericsdottir, and Keli Thorsteinsson

“Thank you for taking this journey   with us. We hope this book brings a new awareness of the opportunity we have   to help those with autism learn to communicate and realize their ambitions.   People with autism have the potential to achieve great things, but only when   given the appropriate support and education. This is why the Golden Hat   Foundation was formed. All author proceeds from this book go directly to the   Golden Hat Foundation. With your help, we can change the world for people   with autism.”The book is made up of Kate and Margret’s stories, their personal email   correspondence, and Keli’s poetry. Kate has shared this story with some of   the world’s most famous people, posing the question: “What is important   to you to express?” Their responses are a collection of self-portraits   and their answers to the questionAll the author proceeds from this book   will benefit the Golden Hat Foundation, founded by Kate Winslet and Margret   Ericsdottir to build innovative living campuses for people with autism and   raise public awareness of their intellectual capabilities.”

What books would you recommend? 

Check your local bookstores for great resources for parents and caregivers. My only piece of advice is look for first-hand memoirs or from those who are medical professionals. Come back and let us know what you found.

 

 

 

When Being Motherless Meets Autism

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My heart is in my throat. I realize I am not breathing. My body remains still. I feel like I am watching this on a television, and not in real life.

I didn’t expect her to know. I thought she didn’t care. She doesn’t respond to adults in general, so it never crossed my mind. She amazes me daily.

Yet, there she is with her. The breeze picks a bit. I zip up my jacket. Before I go to tell both my girls to zip up, our friend’s grandma tells my baby girl to do it. AND SHE DOES IT!! My girl even gives her an un-solicited hug.

I know not having a grandma in our daily lives for my oldest daughter and myself has been hard. No grannie spoiling the kids. No extra smiling face at birthday parties. My oldest has asked questions and seems to understand.  She learned about death early on.  With my youngest’s challenges, she doesn’t seek out people. She needs prompts to make eye contact. She does know this lady pretty well.

Grandmas are special kind of people that parents can’t compete with.

That’s when I got it when watching this special interaction. She may not know what she’s lost, but she sure knows how to appreciate it when it is here.

Why I’m Not Lighting Up Blue. #Autism #YMCCommunity

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I will not be lighting up blue or adorning a puzzle piece today, April 2nd. When you live and breathe autism 365 days a year, it is tough to swallow one day when the world tries to show its support by changing their avatar to be an Autism supporter. When Autism Speaks helps with increasing resources for families like mine in Canada instead of merchandising the ‘cause’ and giving themselves pay raises, I might reconsider.

I understand for those who don’t know what to do to help, it seem like a quick fix. Then from April 3rd, until the following year they go for the next charity flavour of the month.

“Going Blue” wants to find “cures.” My six-year-old daughter is not diseased. She doesn’t need to be repaired. She/we need resources to enrich her life, help her gain independence and help her to communicate. I have never heard her say to me in words, “I love you mommy. “ She just says it with her body when she brightens from head to toe as she runs to give me a butt-clinching hug, her arms wrap around me so tight.

A local ‘renowned’ psychologist told me, when my youngest daughter was 3 years of age, she would never speak. My beauty says her full name and reads many, many sight words today.

She dislikes being told ‘no’. She loves The Wiggles and Doritos. At her tender young age, she doesn’t know exclusion. That’s my role as her advocate. You want to know how to help others and us:

Look Local

There are so many local organizations that are looking for help. Ask at your local child development centers or health units for directions.

What to say to a local Autism Warrior Parent.

Here are two local places that are doing wonders for our families:

Pacific Autism Centre

Canucks Autism Network

Local Neighbors

Do you know if family who may have a loved one with autism or other challenges? Say Hi and introduce yourself. It’s okay to ask questions. Most parents are happy to answer them. If it’s a classmate of your child’s, invite them for a play date. If the parent hesitates, offer them to come over for coffee. It will do wonders for you and your child to find out for yourself just how beautiful all kids can be.

Start the conversation. Inclusion lessons begin at home. Autism does not define me for my daughter, nor for our family. We define ourselves.

Local Mamas in the #GVRD had this to say about April 2nd, Autism Awareness Day.

Dione Costanzo, mom of an awesome 12 year old boy, says, “ Forget the blue lights! How about a dose of reality for autism awareness day? I would like to share this series “Faces of Autism” which ran in the Vancouver Sun in 2007 – the year my son was diagnosed. This six part series was a wealth of information for me and for those around me who were trying to understand what we were going through. For Autism Awareness Day please take some time to read this series which is linked here and is a really good glimpse into the lives of people with autism, their families and some of the issues they face daily. Although this series was published 7 years ago it all still applies including the lack of medical coverage for autism treatment:

http://www2.canada.com/vancouv…/features/autism/index.html

Mom of 13 year-old and 18 year-olds on the spectrum, Vicki Parnell says, “Do the blue lights serve any useful purpose for families living with ASD? I think most people are aware of autism. Maybe it’s time to move on to promoting acceptance and inclusion of people with ASD.”

Anonymous writes: “I worked closely with AS and after attending a ‘conference’ by them in Pennsylvania, I quit. Myself and two other ladies were flown to Philly to represent our ‘walk’ and attend what I thought was going to be a conference, discussing research and awareness etc. I felt more like I was attending a mass multilevel marketing sales meeting. It was a celebration of all the money made at walks and then a huge 2 day sales pitch on how to go after more money. How to market. How to net sponsors. How to get more $$$. We were even told that, despite being a newish walk and raising awareness and giving families a fun day out together, we hadn’t brought in enough $, and maybe they’d cancel our event. Before we’d left for this trip, I had approached a good friend, looking for sponsorship. He was skeptical and asked me many questions, one of which included ‘why does AS have its head office on Park Avenue in NYC, and not a lower rent area?’ I wondered about that too. So I went there very curious about their bottom line. Well, let me tell you, cocktails on trays, fancy appies, all food covered, all us Canadians being taken out at night for beers and dinner by our national leader, paid for with her AS expense card. The fact that we met several delegates from Hawaii and all over N.America who’d all been flown I. Heck, in my case, they couldn’t book me a decent flight home that wasn’t at 2am, so they put me up an extra night in the hotel, as they made all the arrangements. All of these things made me question where a huge amount of the fundraising really goes. I came home feeling terrible about what I saw as a huge waste of money. I have worked with CAN and they are so much more fiscally responsible. I work with another charity and we are soooo fiscally responsible that we never spend a penny without huge discussion. As someone who was on the inside, I did not see an organization in anyway concerned with awareness or programs. I saw an organization worried about generating money. I even asked one of the big up vp’s why they don’t hire more individuals with autism and was ambushed by my national rep later for speaking against the organization. The amount of $$$ spent at this event was astronomical. Over 250 attendees flown in, fed and housed, given prizes, swag, awards. Unreal.”

Want to know more about Autism? Ask away.

My New Favourite Read: The Truth About Us

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Honestly, I never want to be a teenager again. As an adult, I’ve been finding myself diving into the world of Young Adult books. Maybe it is because I will be a mom to teenagers soon. I had the opportunity to hear Janet Gurtler teach a workshop at the Surrey International Writers Conference in 2013. Her latest, The Truth About Us, is out April 7th.

Jess knows she screwed up. She was disloyal to her best friend and is now paying the consequences. Her dad is making her spend the whole summer volunteering at the local soup kitchen.

She realizes that she isn’t the carefree party girl that she pretends to be. People see a different Jess that Flynn does. They come from different sides of the tracks.

Will they be allowed to continue their relationship when summer ends?

I found the story very revealing on how the stigmas of lifestyles are still very much present in teens today.

Janet Gurtler has received numerous awards and accolades for her young adult books. Her writing will remind you of reading Judy Blume books way past bedtime under the covers with a flashlight. Janet is a passionate volunteer and continues to look for ways to give back. Janet lives in Okotoks, Alberta, Canada, with her husband, son, and a chubby black Chihuahua named Bruce. Visit her at www.janet-gurtler.com. Or connect on Facebook or Twitter @janetgurtler.

Inside The O’Briens by Lisa Genova

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Inside The O’Briens

By Lisa Genova

Award winning author and neuroscientist Lisa Genova has brought us inside the world of Alzheimer’s, Autism and more. With her new book Inside The O’Briens we follow the family through the world of Huntington’s Disease.

Joe O’Brien is 44 years old. He is a devoted husband, father of four adult children, and a respected officer. The O’Briens all live together in the Irish Catholic neighborhood of Charlestown, Massachusetts.

Joe initially blames his odd behavior to the stress of his job. But as these symptoms worsen, he agrees to see a neurologist and is diagnosed with Huntington’s Disease, a lethal neurodegenerative disease with no treatment and no cure.

Each of Joe’s four children have a 50 percent chance of inheriting their father’s disease, and a simple blood test can reveal their genetic fate. The youngest daughter, Katie, struggles with whether or not she wants to take the genetic test and find out her fate? She has a boyfriend and a career she loves. Will life be better not knowing?

Lisa Genova writes her stories in a heartfelt and emphatic way that will have you laughing, crying and wishing you had a place at the O’Brien table. The ending left me wanting to know more about what will happen to the O’Briens.

Find out more about Lisa on her site: lisagenova.com. Connect on Twitter: @LisaGenova.

 

 

Why I Love Spring Break

Seattle1990 The movie let out on time. My belly is full of popcorn. My friend’s boyfriend unlocks the bed of truck. I squish up against the passenger window as he revs up the engine. I really wonder if I am going to ever stop being a third wheel?

It has been a month since I was dumped on Valentine’s Day. I threw myself into having the best Spring Break by getting together with friends, going to movies and shopping. Judy and I went to the States yesterday for more shopping. My foster mom is pretty awesome. She is giving me the childhood I never had after mom died.

Riding down the main street in town while being elbowed by my friend in the middle seat, I want to be anywhere else but here.

Our driver starts to swerve on the road and explains he is trying to get the attention of a beige station wagon that is changing lanes. The wagon verves left into the Cold Beer and Wine store parking lot.

My friend and her boyfriend jump out to join the people piling out of the wagon. I stay behind, bored out of my mind. I hear a yell, “BUBBLES, GET OVER HERE!.”

I look over at the group crowded in front of the beers store curb. I uncross my legs, which were relaxingly stretched out on the bench seat. I stroll over to the loud cluster.

I step off the curb and look up into the eyes of familiar caramel brown eyes. The tall dirty blond man is leaning up against the driver’s side of the station wagon.

A light bulb clicks on in my heart and soul. It’s him.

25 years later, a certain look from him can spark my light bulb in my heart and warm my body.

Happy 25 years together, my best friend.

I will always love Spring Break, thanks to you.

Here is to the next 25 and more!!

xoxo

 

Thank you, my village 

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Dear Village,

I promised myself I wouldn’t cry. Having put myself last countless times, I lied to myself that it won’t matter. I’ll be okay. I didn’t blame anyone, but myself. It’s just how it was ingrained in me at a very young age. I don’t matter.

Years droned on. I couldn’t find it within myself to say no until after my miracle bonus babes picked me to be their mom. I continued to jump into whatever I needed to do for my family. It’s how it’s always been. It’s what you do when your village is tiny.

Until my doctor told me otherwise, I did matter. Surgery happened so fast. I had to lean on my village’s shoulder. You let me. I got better. Then, I snapped into reality. I have to be my own priority. Some members left after showing their true colours. Some showed up, which made me feel taller and stronger. I felt like I counted.

Thank you my village for sticking around. I am forever grateful for your effort to hold me up. I am relieved to know you are here.

The health chapters are not yet closed. I do appreciate and respect all the amazing health professionals out there. Thank you.

With forever love,

Danielle.

PS.. call your mom. Make a yearly checkup with the doctor now. Because I said so XOXOs

Mom Saver: More Boredom Busters Twitter Chat

Screen Shot 2015-03-01 at 3.30.21 PMI have a mom confession. I am a terrible crafter. I don’t know how to make DIY anything. My poor kids might be suffering. When I saw Boredom Busters on the shelf at Chapters, I opened it up hesitantly. I was pleasantly surprised on how easy the activities are to do.

The fun continues in More Boredom Busters. It has over 50 awesome activities for 7 years old and up. Each chapter is themed for occasions all year-round. There are lots of ideas to inspire you to make DIYs for favourite holidays, including party food.

My favourite is the Permanent Marker Mugs. I am going to make one for myself!

I can’t wait to dive into the rest of the fun things to-do this March Break.

Are you on Twitter?

There is a Twitter Chat happening just in time for Spring Break! Log into Twitter March 12th 12:00pm-1:00pm EST for a chance to find out more, and how to win a copy! Follow @ParentClub and use the hashtag #MoreBoredomBusters.

Boredom Busters and More Boredom Busters include easy instructions and uses for simple materials found around the home or classrooms. Both books are sold at your local bookstores and online. To find out where, check out the author’s site.

Follow Caroline Fernandez on Twitter: @ParentClub and check out her site: www.parentclub.ca.