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2013: Magic Moments From Around The World

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2013 was not a good year for me. After a reasonable enough start, I lost my job in May, at around the same time one of my best friends passed away. Throughout the summer I fought an uphill battle with depression as life dealt me one blow after another. Fortunately, though, I am a natural optimist. I go through life with the attitude that no matter how bad things are, they will always get better, and there is always something for me to be thankful for. I have my husband and children, a roof over my head, clean running water and autism services for my son. That alone puts me way ahead of many people in the world.

Among all of the loss and heartbreak, there have been some shining moments this year. I had a very enjoyable and much-needed break in Niagara Falls with my family, I ran a half-marathon personal best for my autism run, and after years of procrastination I wrote a book in thirty days.

I posted a message on Facebook asking people to share their best moments from 2013, and I got some great responses. There was a lot of joy going around this year.

My friend Patti, for instance, has been dreaming of going to Europe for a long, long time. This year, she finally got to go.

Margie, who never fails to inspire me with how spectacularly she has turned her life around over the last few years, got married to the love of her life.

In January, Debbie from South Africa became a Grandma! She has also been rethinking her attitude to life by surrounding herself with inspirational people, things and activities.

One of my favourite responses came from liver transplant recipient Bill. He says, “I am alive. Every day above ground is a good day. Everything else is just icing on the cake.”

Noella sent one of my other favourite responses. She lost her beloved husband to cancer – a scary and sad time for her – and yet she is focused on how her needs have been met to the extent that she can help others. Here is what she says: “I am amazed at the outpouring of love and help from my local and internet community. I thought this season would be extremely difficult, but I have felt Bill with me almost every day these last several days, and he says to me, “It’s okay, I’m okay, and you’re going to be okay; it is the way it’s supposed to be.” There was even a moment when I was taking a shower when I remembered him walking in on me and joining me. Made me giggle as he seemed so close like he was doing it again. Gives me great comfort.”

Then there is fellow Canadian Jacquie, an online friend who I had the absolute pleasure of meeting this year. Jacquie is a special needs mom like me. Her younger son is adopted. Jacquie’s highlight was going to an adoption conference and learning that she is not “a bad and crazy mother”. I could have told her that for free, but you know… Adoption is not easy – as an adoptee I can testify to how challenging it was for my mom as I was growing up – and it gave Jacquie great comfort to know that she is not alone.

Kane used to live in Michigan, where there is lots of snow. This year, he moved to Texas, where there is – well – not a lot of snow. His reason for moving? To be with the love of his life. He says, “This is the most awesome I have ever been.”

Tawnya, another fellow Canuck who has been a great source of friendship and support this year, didn’t have a great year. Her husband contracted a very serious lung infection – so serious that doctors told her to call family members. She received overwhelming support from family and friends during a very scary time, and her husband survived.

Finally, my crazy New Zealander friend Karyn (whose initiation as a runner I totally take credit for) shares another story of survival. Her father-in-law had Stage Four bowel cancer. Anyone who knows anything about cancer will know that this is not good. But he got the all-clear, proving that sometimes, miracles do happen.

I am truly grateful to the people mentioned in this post for sharing their stories, and for giving us a slice of happiness to take with us into 2014. I wish the best of years to every single person reading this. If you have your own gem from the last year to share, please do so in the comments!

This is an original post by Kirsten Doyle, with input from some pretty awesome people. Photo credit: jenny downing. This picture has a creative commons attribution license.

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GUEST POST: It’s A Marathon, Not A Race

The first time I met Jennifer Krumins, she was having a fight with her laptop. She was slated to give a parent education presentation at George’s autism therapy centre, and she couldn’t get her technology to work. She endured some good-natured heckling from the front row (read: from my husband), got her PowerPoints to work, and went on to deliver a riveting presentation.

Jennifer is an autism parent, educator and author. She willingly shares her hard-earned wisdom for the benefit of parents who may be feeling a little overwhelmed by the whole special needs gig. Thanks to what I have learned from her, I have become somewhat good at advocating for my son in the school system without alienating anyone along the way. Whenever I start getting my annual IEP-related panic, I start posting stuff about it on Facebook in hopes that Jenn will respond with a gem of wisdom, and she always does.

Since the first time I met Jenn, I have attended more of her presentations and roped my mom into filling out a questionnaire for her book entitled Autism and the Grandparent Connection (which you really should read, even if you’re not a grandparent). We have become friends and we’re looking forward to having a drink together at this year’s autism symposium that Jenn will be presenting at.

Today, she tells us about her journey as an autism parent, and offers us some advice to help us along the way.

I don’t run marathons. I really admire people who do. I have some friends that train faithfully and test their endurance over the course of a few hours…by choice!

I am the parent of a sixteen year old boy with autism. Biggest marathon of my life. Yes, raising a child with autism is perhaps the supreme test of endurance. And yet, like many of my running friends, I would sign up to do it again because in my memory, the moments of success were far more remarkable than the moments of pain, exhaustion and heartbreak.

So what are the secrets of our successful marathon? Is it a medicated state of euphoria that I am experiencing….only to be rudely awakened by reality when the meds wear off?

No. I can honestly say that while the road has been long, harrowing at times and I have fallen on my butt on many an occasion…the journey has delivered far more emotional, intellectual, spiritual and social growth than our family could have dreamed.

The secrets have been revealed to me through fellow “autism marathoners,” trial and error, and most of all through the wisdom of children with autism (my own son and those students whom I have had the privilege to teach). I have learned some valuable tips to enrich the journey and increase endurance:

1. Instead of carb loading…try optimism loading. It’s very good for you and your child! Optimism is a way of looking at life and its inherent stresses. Being an optimistic person does not mean that one is always happy and peppy… it is that you choose to look for opportunity in the middle of adversity. Feed your brain with daily/hourly reminders that adversity is temporary, and that your child is making progress (even if it’s tiny steps). “Children learn what they live,” and as the adults in a child’s life it is our responsibility to model an attitude of positive persistence and hope. We can choose to believe that there is hope, meaning and joy within any given moment.

2. Take a long term approach to training. You would not be able to run your first marathon immediately after deciding to do so. You need to train. It’s the same thing with raising your child. Too often, we get stuck on a panic button in the early years. We may feel like we have to do it all right now in order to win the race against autism. It doesn’t work that way. Live in the present but plan for the future. Each day, each hour that you invest in being the kind of parent you want to be has a cumulative effect. In the long run, it is the lessons of perseverance, self- advocacy, and hope that will develop your child’s ability to be resilient and to ignite a sense of self- worth and self -confidence. Children learn by doing….by failing and trying again. They do not gain self- confidence when we tell them they can do it….and then we do it for them. The values you live by will be the greatest gift you give your child with autism….more than any treatment/intervention.

3. Visualize and rehearse the route. What are your long-term goals for your child? What do you envision for your child in the future? Design your plan so that you not at the mercy of someone’s map. Take the time to write down your thoughts on the following: What are my child’s strengths, skills, interests, challenges and limitations? What about my child gives me the most joy? What are my biggest fears or worries? What goals do I value for my child’s development? What specific behaviours, or other problems, have I observed? How did I react? What did I do in the situation? What could I do better next time, if anything? Have I recently noticed any changes in behaviour or ability? Be prepared to share what you know with those who are on the journey with you (even if you don’t like them). But remember, your plan must be in writing.

4. Talk with folks along the way, enjoy the course, smile often. The autism marathon is a social event. Too often we try to do it alone and we burn out. We need each other. We even need the people that drive us nuts because they keep us running; trying to learn more, be more and advocate more. Choose not to allow bitterness, resentment and hatred ruin the journey. We are the ones who suffer (as do our children) when we allow destructive feelings to shape us. Advocate one step at a time, one person at a time with patience and humility. The journey is much richer when we allow others to help. It is a sign of strength and selflessness to say, “Yes, I could use your help.”

5.  Set goals. Work to achieve them and stay focused on the things you want. Your life does not wait until you “fix” the autism. This is it. Treat your life as the gift it is. The time is now to take figure out what you will be living in the next five years (ten and twenty). Start with small steps towards those goals. Catch yourself if you are waiting to live your life. Perhaps, autism is in some way a vehicle for achieving those goals. Seize the time and model for your child what it looks like to live a goal directed life.

The marathon continues. There are more times of peace now…but never for too long. Struggle creates a rich environment for personal growth. Just set your eyes and heart on the target and keep putting one foot in front of the other.

To learn more about Jennifer and the books that she has written, check out Autism Aspirations.

(Photo credit: Jennifer Krumins)