Say Hi

Just as my shoulders relax into the normal position, I see a mom watching us from a corner of the playground. I feel her eyes heavy upon us as I help my daughter on the Monkey Bars. My girl runs off to the slide and I stroll back to the bench to take a break. Knowing the other mom is still gazing at me, I realize that I am in fight mode. Ready to jump at anything she might do or say.

  1. Grab her kid and leave if my girl approaches or goes near her kid?
  2. Wait for their head tilt and whisper, ‘Does she have autism?’
  3. Hear all the stories about how she knows someone with autism or fill the air with diet and vaccine stories?

I truly welcome sincere questions about my daughter. By talking it means educating. Which means, parents talking with their kids. Hopefully it will lessen the stigma. Then, it can be less about the kid at school with a helper and more about their classmate who likes Cars too.

That is what gives me hope in the world, where my daughter and all children grow up in: friendship, kindness and compassion. It is really easy to guide you kids to what they may have in common, not just what is different.

Autism can be very isolating. As my girls main caregiver I miss adult conversation. I crave to talk books, Netflix or even the weather.

I am so lost in my thoughts I didn’t realize that the other mom came over to me. I turned around to face her, with a smile plastered on my face and guard up.

She speaks first, “Hi. I’m Laurie.”

Transitioning Your Special Kid into Kindergarten

A+ Rubber Stamp on Notebook PaperAfter my youngest was diagnosed with autism at the age of 3, kindergarten loomed like a big black spinning hole. The next two years were crucial in preparation for kindergarten, in order for it to be successful for her. I built the home therapy team with professionals that I trusted, and most of important that my daughter trusted. I got every referral and jumped on every waitlist for extra resources available outside of her funding.

I found a local pre-school that had an opening for her to enter in at age 4. I secured a support worker to be with her at the pre-school. (My daughter was non-verbal so one-on-one was imperative.) With OT, SLP, ABA, Floortime and every social opportunity we could find, we armed her ready for school.

It was a success! Here is why and my two cents:

  1. I started the school conversation early where she would be attending, asking for short visits if possible.
  2. I took pictures for a storybook to look at throughout the summer: including a desk, teacher, toys, gym, playgrounds and where my child would be at during the school day. I found an anchor toy in her class that became her motivator to visit her classroom.
  3. Don’t let Mama Bear out too early. I realized that by not coming in with guns blazing right out of the gate, we were able to thread a support team on both the school and home front. I asked A LOT of questions. I asked for their thoughts on what her home team can do to help. Kindergarten teachers are experienced. Write out a list of questions before any communication or meetings. You wont be the first parent to have a list. Ask if half days are an option. We did, and saved therapy sessions at home for after lunch. Full Day Kindergarten plus two hours of home therapy will make any kid burn out. Ask if you can talk to another family from the school as well. You can learn a lot from those who have been through, and are going through the system. We started out by having her go to school for one hour until she made it clear that she wanted to stay longer.
  4. Save Mama Bear for the red flags. Schools are there to help your kid, so having a calm presence to start will help everyone be on the same page.
  5. Enjoy the prep time. It will be okay. Show your kid pictures of when you were in kindergarten and share some stories.
  6. Ask the school if one last visit in late summer is possible. It would be great to reaffirm what is happening, so your kid can get excited about what is to come.
  7. Get a first-day fun outfit for your kiddo. Pick out a favourite character backpack and lunch kit. Pack certain yummy snacks only for school. It helps for their visual cues on what is to come as well.

The “What-ifs” are scarier than reality. You have done well in doing what you can to raise your child. It will be okay. You will start to breathe easier after the first week. And by all means, treat yourself to the first-day hot coffee/tea at your favourite spot, ALONE.

How I Survive Mother’s Day

cropped-me-and-my-mom.jpgThe bright morning light awakens a new day. I am standing in the kitchen, heavy hearted, facing the calendar. With a long deep cleansing breath, I flip the calendar from April to May. The date stares out at me as if it had a spotlight on it. 30 years ago I celebrated my last Mother’s Day with my mom.

Since then, I have spent years blurring out the day by taking extra shifts at work, or by many other self-made distractions. It was just another painful reminder that my mom was not here.
Mother’s Day became a new mixed bag of emotions when I became a mom. One half of me craved the joy of celebrating with my girls, and the other half still wanted my mommy. How can I miss someone I barely knew?
I posed the question to my social media circle whose community embraced me. The virtual loving support I received from cyberspace broke the isolating wall that surrounded my heart since I was ten years old. Many other motherless moms made themselves known. We continually keep in contact, especially when anniversaries and Mother’s Day approaches.
The feeling of belonging made me more empowered to do more things positive to celebrate my mother, instead of grieving all the time. She loved purses. I remember playing with her boxes of purses while she napped post-chemotherapy. My girls now play with mine. Every weekday afternoon I watch The Young and The Restless (her favourite show). It makes me feel connected to her.
I see my oldest daughter looking at my childhood album. I sit beside her and tell her stories of when I was younger. She asks questions about my mom. I find myself smiling when I share reflections of her grandma. My mom was a school teacher. Subsequently, I had to do homework right away and never leave it to the last minute. My daughter closes the book and goes to play with her dolls.
Feeling lighter, I move on with the morning activities. I realize that I need to share with both my daughters their grandma. Just the past five minutes reminds me that there were good times to cherish. I spent years in anger that she died. I still get emotional at the injustice. It never changes anything. She is still gone.
I owe it to my children to cherish my time with them, because life is too fragile. The passion to repair my story by writing new chapters motivates me to be the mom I don’t have anymore. That is the best gift I can give myself this Mother’s Day.

Wishing you the best wishes and dreams this Mother’s Day and every day.

The First Motherless Mother’s Day

I am standing in the hallway with my teacher, who is explaining to me that I can do my book report in the library. I shake my head saying that I want to stay in the classroom.

“The class is working on their Mother’s Day projects. I thought you would be more comfortable doing something else.” He can’t even look me in the eye.

I mumble. “Ok “and slink back into the classroom to get my notebook and book materials. I avoid the looks from the other students. My cheeks feel like they are bright red. I close the door behind me and walk down the hallway to the library. I look around and find a quiet corner to work. Spreading out my things I feel so alone. With that, I miss my mom so hard it hurts.

She has been only gone less than a year and it feels like it was yesterday when I last saw her. She was in her hospital room and couldn’t talk. Breast cancer took her from me and my sister. I pause to wonder what the rest of my class is making. I remember making her a homemade card in my Grade 5 art class. I gave it to her at dinner which she loved. I didn’t know it would be our last Mother’s Day together then.

As if overnight , my friends faded into the sidelines. I was the freak who didn’t have a mom. No one knew what to say or do when they were around me.  My teachers excused my poor grades because my mom had died.  I try to smile my way through the days when all the while I just want to go back to how life used to be.

A classmate enters the library to tell me I can come back. I realize I never even did any work. I collect my books and follow him, enter the classroom behind him. My eyes dart around the room to see what they had made. I couldn’t see anything. It was as if Mother’s Day didn’t exist anymore.

I guess it doesn’t for me anymore.

My Mother’s Last Mothers Day

‘Happy Mother’s Day, Mommy.” I hand over my homemade card to my mom at the restaurant.

She opens it and sees my self-made coupon for her to cash in when she needs dishes washed. Her eyes scan the card like it was the first card she had ever read. I patiently wait to see if she really likes her card and gift. Our eyes meet over the table and she beams the widest smile.

‘Thank you honey. I love it.” She says.

Just then our desserts arrive in all their sweet glory. We are at her favorite dinner place. It is so grown up here that there are cloth napkins. My sister and I wanted to make this day very special for her. Everyone keeps whispering around her that we need to treat mom very well because she is so sick. I am never allowed to ask her what is making her so sick or urge her to take her medicine so she can get better.

She excuses herself to the bathroom. She gets her cane in place and hobbles to the back of the restaurant. I follow behind her saying I had to go too. As I wash my hands I stare at myself in the mirror. I still can’t help feeling like something is not being said. I love my mom so much. Before I can think anymore, she comes out of the handicap stall.

We walk back to the table as my sister and dad are waiting to go. After we get home and get into our pajamas, I hug my mom tight. When she tucks me into bed our favorite way to say goodnight is telling each other “I love you more than a million oceans.” I smile as I close my eyes and drift off to sleep.

Little did my ten-year-old self know is that was the last Mother’s Day I had with her. She died of breast cancer three months later at the age of 38. As hard as it was to see her in her chemo-ridden self, I hang onto the memory that we honored her on Mother’s Day and every day since. It’s what moms deserve.

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

shopping cart

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

Autism Awareness Month Logo

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

Autism Awareness Month Logo

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

Autism Awareness Month Logo

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.