#WorldAutismAwarenessDay … #drumming … #dreaming

Today, April 2nd 2014 is #WorldAutismAwarenessDay. Around the world today there are thousands of parents, families, and other advocates that are doing all they can to bring awareness about the autism world. Many are raising flags, others are choosing to Light it Up Blue. I chose to remain quiet about the whole thing. The thought of advocating leaves me feeling drained. I prefer to keep the energy I have to cope with the daily demands it brings to our family with our adult son.

That is until I received an email today that brought me back to the ‘reality of our autism world’, and that is the need to advocate whenever I feel strongly about something that seems unfair or doesn’t sit quite right with me or that simply needs to be voiced.

A few days ago was the year-end for a government program from which our son receives funding so we can pay for the services he needs. This program helps us to afford and find the opportunities and activities that helps in many ways to bring more meaning to his life. We are very grateful for this program. I was informed today that the government in our province will no longer accept receipts that are out-of-region or out-of-province for activities and outings. This news hit me like a brick wall.

You see, a few years ago our son began telling us that he really wanted to go downhill skiing. You could almost say that ‘Persistent’ is his middle name. He was not backing down on this one so we better get used to the idea that he was going to be on a ski slope one day, soon. He was letting us know that he REALLY wanted to ski. It took a little while for us to get comfortable with that thought of him going down a hill. We asked the young woman that we had hired to support him to see if she could do this with him. Her eyes lit up at the opportunity, and that said it all. She loved skiing, was very comfortable doing so and looked forward to the opportunity to teach our son this new skill. Knowing that if anyone could teach him to ski, it was this young woman, she knew him well enough. The first time out with him they went down the very smallest hill, actually I don’t even think it’s called a hill. The first time down was a breeze for him, so they got on the chairlift and up they went to the bigger hill and have been skiing down those ski trails since and have had so much fun together. This is not an activity that our son can do alone, he needs the support of someone who knows him well. What I saw upon his return from those afternoons that our son got to spend on the ski slopes, was a rosy cheeked young man that came back home laughing and so happy. There was a huge sense of accomplishment for him I feel. There’s no doubt that he had such an amazing time. Just look at his smile. Skiing has been such a wonderful activity that as helped him learn so many different skills, where many of these teaching moments have been able to spread out into other areas of his life. It’s been such a winning combination in so many ways.

ski day

Ski slopes

Knowing that those skiing afternoons possibly may become non-existent for him in the future because of the distance he’d have to drive to a ski slope in our province, brings me incredible frustrations. How will I explain to him next winter that he probably won’t be going because I cannot use this funding for the skiing activity where he was going. He won’t understand that. All he will get is the ‘no skiing’ part and there are not going to be any happy moments out of that one. He doesn’t understand the government bureaucracy and the reasons behind their decision making. That makes two of us. This frustrates me to no end. It feels like another door just got slammed shut.

The problem that I have with the news I received today is that it places limits for our son again and who knows how many more people with special needs in our area who love downhill skiing or any other activities out of province for that matter. The place where he was going skiing is less than 20 minute drive from this young woman’s home. How perfect, or so I thought, it’s just a hop, skip and a jump into the next province . It couldn’t get better than this. We were so grateful. Now to think of ski slopes within our own province, the closest one that I can think of is 2 hours from our home, which means almost 3 hours from this young woman’s home… which would make it a 6 hours return trip for her to drive our son skiing for a few hours. Where’s the logic in that? Less than a 20 minute drive where they were going, as opposed to 3 hours one way to get to a ski slope.

chairlift

downhill skiing going down the hill

I easily could have let this brew in me for days, frustrated by a government system, but it would get me nowhere productive. I felt frustrated that it’s our children that get the short end of the stick, again. So instead of brewing over this today, I instead decided to take out the native drum I made myself a few months ago. I closed my eyes and began drumming. I knew at least this would bring me comfort for the moment if nothing else. Minutes passed I don’t know how many, listening to the rhythmic drumming… and the more I allowed myself to let go of this news and to just drum, I began feeling so much calmer. To my surprise, many insights of things our son might love to experience in his life began bubbling to the surface. They were things that spoke of who he is, and his many interests. It felt like a magical moment. I asked my husband to grab a paper and pen and to jot down what was coming to me as I continued to drum. In those few minutes I clearly saw a better life for our son… opportunities with no limitations, somehow unfolding exactly as it should. How awesome. These insights are seeds, part of that dream for a better life for him… seeds that need to be nurtured, watered and fertilized, and also allowed to grow. No limitations. This brings me comfort and that’s what we’re going for.

Tomorrow I will be making phone calls, and advocating… helping bring awareness to the right government people that make these decisions. Asking if they may reconsider the out-of-province issue, when it’s minutes away for our son to experience the downhill skiing that he loves so much as opposed to having him drive 5-6 hours to go skiing. They need to hear from families and how sometimes a decision that seems to make the most sense to them, isn’t always the best one for our children and our families. But first, I need a little bit more drumming time!!

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Comments

  1. Wow, wow and triple wow from me here in a big city where children like yours get looked after, I could say in a better way. Truth is I have little idea how they get looked after. Thank you for bringing insight and awareness into the needs of other families where I live too. Oh and big congrats on writing this post too. Who cares how many months since the last one when blogs as good as this come out! Hope you do lots more drumming, love the insights that come from it.

  2. Sandy King says:

    It’s been noted that women can lift a car if their child is trapped underneath . You’re lifting Suzanne and good for you ! I bow to you and the commitment you make to advocate for a better circumstance for you son . It made me aware , and others too no doubt .. Oh and so nice to see your voice on your blog and loved that mile wide smile on your son too .

  3. Suzanne, the smile on his face says it all. He must have had blast this winter. I’m sure you will do all you can to make it happen again for him. It’s a Mom thing!
    So glad to see you here again too!
    Sue recently posted..Comment on What’s in a name? by SueMy Profile

  4. Sending you strength for the fight and asking God to provide for your family, dear Suzanne. Please keep us in the loop. A fundraiser may be another idea to look into also. People are so eager to help. ♥

  5. Dawn Conery says:

    You are an awesome Mom and your blog posts have so much to say. Perfectly timed I would say. hugs!

  6. Victoria Fann says:

    Thanks so much for sharing this Suzanne! I LOVE the photos of your son! I can feel the happiness coming from him and how unfair it would be to take something that flowed so beautifully for him away. The world doesn’t make sense and I feel strongly that this beautiful souls who are coming in with special needs are here to shine a light on the absurdity of our rules and ways of doing things. It’s hard on the families, but there is a much bigger picture taking place here.

    I’ve advocated more hours than I can count for my son when he was in school, fighting over taking care of his most basic needs, so I totally understand the need to speak up. As you, I couldn’t hold back, no matter how tired I was, the need to speak up burst out of me as it has here.

    Your sacred drumming is so magical because it connects with the bigger picture of what’s happening, tapping into the unseen realms to access a place of peace and clarity.

    Sending blessings and love to you and your family. Best wishes with your advocacy…holding the space that we’ll see more joy on your son’s face next winter!

    • Victoria, thank you for your message. I agree that the people that come into this world with so called special needs, in one form or another are here I believe to help us awaken and evolve and really to teach us so much.

  7. What wonderful photos and I agree his smile says it all. Bring out that fierce maternal spirit and strive for that better future for your son and many more. I wish you well and enjoy the drumming.
    Karen Main recently posted..From Ice Blonde to Deep Brunette, Finding the Courage.My Profile

  8. Powerful post Suzanne. You express yourself with such clarity and strength it’s clear your son has a wonderful advocate. How wonderful he’s found such joy in skiing! And how wonderful you’ve found such connection through drumming.

  9. Oh, Suzanne . . . you’ve done it again . . . pulled yourself into the holy place with the bigger picture. Sending love and energy to you and your family! Such courage you all have.
    Janet Hovde recently posted..Making Chemo Work for MeMy Profile

  10. This breaks my heart. Having a son who struggles – I know just how hard this can be. Love your boys’ spirit …his rosy cheeks and big smile!

  11. Hi Suzanne:
    Thank you for sharing this post. How frustrating to find out this news, especially knowing how much this previous opportunity meant to you and your family. (By the way, the pics are great!) I love that you are planning on advocating. Is there anything I can do to help?
    Amy Kathleen Kelsch recently posted..It’s A Mindful Life: 8 Awesome DIY Easter Decor IdeasMy Profile

  12. I love the way that drumming magically lifted you to a broader perspective. It does that for me, too. I have several siblings with developmental disabilities, and my family has had to go through the ringer with funding issues over the last few decades. I am holding the high watch for you and your son, as well as my own siblings, for generous and wholehearted funding that takes into account everyone’s true situation and needs.
    Harmony Harrison recently posted..The Great Corgi Leap! In which real paint is put on real paper. Really.My Profile

    • Thank you for sharing with us Harmony. Appreciate the support. :) Big hug to you. I can only imagine what having several siblings with developmental disabilities might mean for a family. Blessings to your family.

  13. Isn’t it amazing how the simple act of “drumming” allowed you to “connect” with the universe and give you a clear message of just what you need to do to help your son and others. Many blessings to you and your family…..”MAY THE FORCE BE WITH YOU”!! I know you will be successful!
    Debbie Goode recently posted..Buster 5My Profile

  14. Drumming is a part of my world too. There’s so much insight allowed to come when you let go of ‘what is’ and go for ‘what can be’. Limitations keep us where we are and positive outlook takes us into the future. Good luck advocating and keep drumming…You’ll be shown the way. There’s always a way. It’s called divine guidance. Follow your heart.

  15. You go, Mama Bear! Be the squeaky wheel that gets heard as you advocate for your son. And keep up the drumming, it sounds magical :-)
    Susan recently posted..Plein Air iPadMy Profile

  16. So much gratitude to each of you for reading my post and leaving a comment. It means a lot to me to feel so much support and understanding. I know that we are not alone with such issues for our kids. For those of you who have asked if there is anything you can do. I will get back to you once I figure out exactly the approach I’m going to take. :)

  17. Keep drumming …keep dreaming. You are on the right track but unfortunately those who are making the decisions don’t really understand the impact they are having on people who depend on their services, on families, on hopes, on dreams, on coping. Forward them your blog; it might help them understand a little better. Just know that whatever you are fighting for is bringing good to many other families in desperate need for support. Never give up on dreaming BIG BIG BIGGER. Those pictures speak a thousand words! Just beautiful!

  18. oh friend, I’m drumming over you and your beautiful son
    in my heart as I write…..so grateful for the opportunities he’s had
    and will have….yes he will. so much beauty and joy still in store.
    I LOVE that you drummed your way into Spirit where the vision
    and generous light met and soothed and spoke, in the way that
    dreams and visions do. So much bravo to you and for you.
    With you,
    Jennifer
    Jennifer Richardson recently posted..sipping gentle medicine…My Profile

  19. Jennifer, thank you for your kind comment. Love your presence here. xo

Trackbacks

  1. […] A few months have passed already since I advocated for our son about changes that the government had just put into effect. The changes that had been made were going to have an impact for one of the activities he enjoys tremendously, downhill skiing. You can read about my initial post on this topic #WorldAutismAwarenessDay … #drumming … #dreaming. […]

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