Friday, August 10, 2012

Barely 2 years old,
already counts to 20

Remember back when I worried that Malachi would be mentally retarded?

Although I appreciate much more fully now that people with intellectual disabilities deserve just as much celebration for their achievements on their timeline, and that their lives and experiences are just as valid and rich as my own, and that nothing I did or merits I possess prevented Malachi, or JJ for that matter, from having those sorts of issues...

...having said all that, well, you can still go right ahead and imagine me doing my happy dance right now complete with "IN YOUR FACE, BRAIN DAMAGE" palm thrusts:



This video was taken a few weeks ago. The other day I went to pick him up from his nap and found him counting out loud to himself. Today, my husband used the same call-and-response you hear on this video to discover that he can count to 20. Malachi even corrects me now when I stop a countdown at one by shouting "ERO!" (zero).

This kid loves numbers. And letters. And colors. In fact, lately his vocabulary is expanding exponentially. He is so overjoyed when he learns a new word that invariably he will shout it over and over again, giggling at me as I respond in kind. In many ways it feels like his world is finally opening up. No, he still can't propel himself around a room — at least not without his scooter — but his mind is definitely going places.

And not to poke fun at JJ, but simply to illustrate how two nearly identical brains process and prioritize information differently under different circumstances, here is his attempt at counting, taken that same week:

(You may have to turn up your sound for this one.)



Since that video was taken, JJ has now progressed from counting "two, two, two" to counting "one, two.... one!"

We all learn at our own pace, eh?

Sunday, August 05, 2012

Silent Sunday: Can't beat Oregon summers


And here I thought he would hate the extreme wind gusts
in the Columbia River Gorge.

JJ threw rocks for about an hour straight. The diaper soon came off though,
so this is the only photo of him doing so that I deemed fit for the Internet. ;-)

Malachi dropping rocks: "More! More!"

Wednesday, August 01, 2012

My tips for fundraising

I'm continuing to work on all the details of getting my children's book Dark & Light to the printers, but I thought you might enjoy reading an essay I wrote for our local chapter of UCP. These are the things I learned about fundraising during my now-famous Kickstarter campaign. Hope they can help someone else on their journey to recovery!

From MorgueFile



On May 28, Memorial Day, I hesitantly clicked "launch" on an online fundraising project to publish my children's book Dark & Light. I was extremely nervous because the campaign represented all of my dreams wrapped up in one: to become a published author and to create a perpetual funding source for my son Malachi's medical needs.
By that evening, we hadn't even raised $200 yet and I was sure it would be a long, slow, pathetic climb to our $5,000 goal by the end of the month.
Boy, was I wrong.
By the end of our campaign, June 27th, we had raised $10,100 and had five major media outlets including The Huffington Post and Disability Scoop— do stories on us. I'm now busy at work to publish 1,000 copies of Dark & Light and orders are still coming in! Our lives have been transformed by this campaign and I'm eternally grateful to the 260 people who supported us monetarily, as well as the more than 800 people who shared the project with their friends and family.
In an effort to help any of you with your fundraising efforts, I've put together a few tips I learned from this journey. I'm far from an expert, but I thought these might be of help to somebody.


1. Decide whether or not you want to fundraise.
I was very reluctant to ask my friends for money. There are a lot of negatives feeling ashamed of not being able to provide enough for your family, feeling guilty about shifting your burdens to others, having your private life and finances on display, etc., etc. It wasn't until I participated in the wonderful Sparrow Club program that I realized that fundraising can be a very joyous and uplifting thing. By allowing others to help you, you make them feel good too. We all want to help our friends when they are hurting, but most of us have no idea how. Once you create a place and a method for people to funnel their compassion and energy, they are delighted to help out and be part of your recovery.


2. Sell a product or service.
Public radio stations know what they're doing. There is a reason they offer "gifts" in exchange for donations instead of simply asking for less money in the first place. People feel much more comfortable giving in exchange for an item than just giving straight. We are trained that money is exchanged for a good or service, so it is easier for people to part with it even large sums of it when an item is given in exchange. Also, friends who can't or don't feel comfortable giving you money might be willing to give something from their craft or professional lives that other people will want to buy.


3. "Three touches."
In my research for my Kickstarter project, I learned the marketing term "three touches." It sounds kind of creepy but it basically means that people won't buy something until they've heard about it three times. I found this to be overwhelmingly true. Even my closest friends and family didn't get out their pocketbooks until well after the first time they heard about the project. I think people need a chance to get used to the idea and also realize that they could donate, too, not just tell other people to donate.

4. Have reasons to talk about it.
So if you're going for "three touches," you're going to want to talk about the project a lot. But everyone hates being nagged or spammed, so how do you keep talking about it without just rehashing? Find different things to talk about. For example, I approached local media (again, three times before they agreed) to do stories on the campaign. When they did, I had another reason to talk about it. Also, I started giving away more things, which was another reason to talk about it. Whatever way you are fundraising, brainstorm about different things you can do during the duration of the campaign to switch things up and be worth talking about.


5. Focus on people, not money
The most joy I got out of the campaign had nothing to do with the amount of money that was raised it was the amazingly supportive messages on people's Facebook accounts and the excited text messages I got when other people were paying more attention to the total than I was. I've never felt as much a part of a loving, supportive network of people as I did during this campaign and I tried my best to let them know that. This is ultimately not about the money. It is about people putting all their bits and pieces together to create something bigger than the sum of its parts. If you've done that, you've won, no matter the final sum, because people will help you more than money ever can every time. 

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