Service Dogs and Fundraising

I never thought I’d be fundraising for an autism service dog. Adopting a shelter dog, maybe breeding purebreds one day.

That was until we heard the doctor tell us about two years ago, right before our daughter’s third birthday, that our Evie had autism. We knew things were different with Evie shortly after her first birthday. She went from an interactive, bubbly, giggly, attention-seeking little girl to a quiet, non-expressive, recluse over the course of a few weeks.

At first, I thought she caught a bug. It was winter and all kinds of bugs go around during winter time. I remember her doing strange things. Pushing her head into the ground in a way that made me think she was in pain. Looking straight through me, as though I wasn’t in the room. She stopped talking. At 12 months old she was saying things like, “Give baby bottle.” She was very impressive developmentally, really. She met all her milestones on time or early. “It has to be a bug. She must not feel well.” Oh, the excuses I made.

I’d see glimpses of the “old” Evie, and I’d think, “No, she’s fine. We’ve been through a lot of change — a big move, a new baby.” I thought maybe it was me. Maybe I wasn’t giving her enough attention. I had a three-year old, a one-year old and a newborn and absolutely no family or friends around to offer a break.

As time marched on, I knew something was different. I did what I do best. Research. I scoured Google. I hit upon autism. I didn’t have a clue what autism was. So I did more research. I remember reading the medical journals online. Catastrophic. That was how it was described. A catastrophic neurological disorder. I thought I was going to throw up. I stared at the screen for a long time, shaking. I grieved, thinking my sweet little Evie had been taken from me by this horrible catastrophic neurological disorder. I cried and cried and cried for months. Not the sniffly, silent crying. I mean the sobbing-until-I-could-hardly-breathe kind of crying.

I made the appointment with her pediatrician. He told me there was absolutely no way she was autistic. Developmentally she met all her milestones well within in the normal range. I wanted to believe he was right. I left trying to tell myself I was worrying for nothing. But things just did not seem … typical. I went back to the pediatrician. He declared again that I was overreacting to normal toddler behavior. I wouldn’t leave. I told him I wasn’t leaving until he gave me a referral to a developmental pediatrician. I remember how angry he was. How he slammed the door as he walked out and came back glaring and handing me a referral. I remember how my heart pounded and my hands shook as I took the piece of paper.

We waited months for the appointments. We drove hours to endure emotionally-exhausting evaluations. Then, a few days before our daughter’s third birthday, we sat in a little white room while the developmental pediatrician told us, “Evie is autistic.”

Funnily enough, my world did not come crashing down. I already knew. If she had told us anything different, I would have known she was wrong and sought out another doctor somewhere else. I’m thankful to that doctor. She told us that there is no way to know Evie’s prognosis. Good, bad, indifferent. She told us about all the different therapies out there. She told us to try what made sense to us and stick with what helped Evie most.

Looking on, two years wiser, I see Evie. I see how sweet and loving she is. I giggle with her when she thinks one of the lines from Super Why is the funniest thing ever. I love her bear hugs. I love that she sees everything in an instant. I marvel at how she can focus at the minute detail of a lady bug crawling on a flower petal. I wonder what she thinks about when she gazes at the sky. I sigh and half-chuckle when I remember back to a time that I thought her autistic-ness was a catastrophic death sentence. That mourning took a toll on me. And, in my opinion, was completely unnecessary. Evie is amazing. Exactly how she is. Her autism is a part of her. She has a memory unparalleled to anyone I have ever met. It makes her different, not less. She has such sweetness to her. She is so loving and kind. I love seeing her eyes light up when one of her siblings tries to tickle her. I am overjoyed to see her look at her siblings when one tries to get her attention and show her something neat. I have met the most amazing people because of Evie’s diagnosis. People who have devoted their lives to helping those with neurological differences. And, in some cases, to my shame, people I would have been afraid to reach out to before autism entered my life. Evie has added such richness to our lives.

So what does any of this have to do with fundraising for an autism service dog?

I see how much growth Evie has undergone in the last two years. We’ve tried many different therapies — some I regret trying, some I love. What it boils down to, for me, for Evie, for our family, is that autism is a neurological difference. Evie’s sensory system experiences the world differently than I do. Where I have a reasonably strong sense of where my body is in the space around me, that might not always be so certain for Evie. Where I understand the concept of danger, Evie does not. Where my sensory system is able to regulate on its own, Evie may need deep pressure to calm her or wake her system up.

A service dog, specially trained, could assist Evie in so many of these struggles. And, as her mom, I’m hoping the dog also serves as a bridge for Evie to meet others. I’m hoping that folks stop and approach her and say, “Hey, I like your dog.” I hope these interactions will build upon each other and one day Evie will be able to say, “Hey, thanks.”

I see the challenges Evie has to face. A world not ready for neurological diversity. A society that doesn’t understand how greatly autism’s neurology affects the sensory system. A culture that can be afraid to approach those who appear so very different, but in reality crave the same things all human beings want — love, acceptance, community, belonging. It is my hope that through it all — the good and the bad — Evie has a service dog by her side to assist her in the many things the neurotypical world takes for granted and to be with her through daily challenges we face whether neurotypical or not.

I write this simply as a recollection. If you are reading it, I appreciate that you took the time. If you feel so inclined, please donate. We greatly appreciate every single cent we have received in our effort to fundraise for a dog for Evie.

http://www.firstgiving.com/fundraiser/adog4evie/donations

https://www.facebook.com/ADog4Evie/

http://4pawsforability.org/evie-castle/

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Returning to Work?

I’ve recently been toying with the idea of working again. Don’t get me wrong. Raising four children under six is no walk in the park (although we do frequently try that … Walking in the park that is). 

With my oldest three heading to school this fall, I plan on having significantly more time on my hands. Plus I really miss my old job! I loved the creative freedom I had creating marketing campaigns, being the managing editor of a newsletter that was published worldwide and covering, writing and editing internal company news.

The reality I’m facing is that I’ve been out of the “workforce” for five years … at least on paper. When you’re applying for work what’s on paper matters. 

So what’s a mom to do? I’m looking at going back to school to get my masters, maybe even work on a Ph.D. Maybe do some writing workshops. Work for an ad agency here and there. 

Adventures in Soy-free Eating

Since two of my children were diagnosed with a soy allergy, we have begun a soy-free food odyssey. Nearly every single product in our home has soy in it. Check out the food labels for yourself. In addition to the listed soy ingredients, the food industry is able to legally not list soy if it is in “highly-refined soybean oil” or soy lecithin form. The argument is that in the refinement process, the oil is striped of the proteins that cause an allergic reaction. Tell that to the many people that still have a reaction after consuming these ingredients.

I’ve been contacting various food companies to see if their products are truly soy-free. Here is a letter to Horizon. The ingredient label does state: May contain peanuts and soy. However, I’ve always felt it’s best to see just how likely the “maybe” label is. I’ll let you know what I hear.

Hi,

We have a soy allergy in our family. We’ve noticed on the packaging of the Snack Crackers (Cheddar) that natural flavor is listed, as well as organic annatto. Do either of these contain soy (oil, lecithin, etc.)? Although I understand that the food industry is not required by law to list a product as containing soy if it is in the oil or lecithin form, my son still has a reaction despite the high-refinement process.

Also, if your other products are truly soy-free in all forms, could you  point me toward a list of them? If they do contain soy in some form, is there someone I could contact to petition that Horizon start using other affordable products in substitution for soy? As I become more educated about soy in many products, I am also learning that there are many, many other people looking for truly soy-free options.

Many thanks!

Writer’s Workshops

I’ve been doing some research on online writer’s workshops. Right now I’m leaning toward Gotham Writer’s Workshop’s Fiction Writing Level 1 course. It’s pricey though! I like that you work with a coach (teacher), fellow students, it’s spread over 10-weeks, and is somewhat directed.

I’ve never written fiction before (that I plan to publish). I need help in plot/structure and character development. I feel like a little bit of direction will go a long way in my case.

For all you folks out there reading this post, do you have experience with Gotham workshops? Thoughts/opinions?

Writer’s Toolkit: Old Maps Online

Old maps and writing! It really doesn’t get much better than this!

I Make Stories

If you’re a writer the odds are high that you’ve poked around through your share of maps. It could be a map you’ve created, a pile of maps you’ve collected for research, or just some maps you have gathered for inspiration. If you’re like me you can never have enough resources for that sort of content. You owe it to yourself to check out today’s toolkit link:

Old Maps Online

I simply love this site. It gives you the ability to explore a myriad of high resolution maps simply by navigating to an area and zooming in. Looking for victorian maps of London? Need a street map of a 1950s town? No problem. With some quick navigation you’ll find it easy to get the sort of information you’re looking for. It even lets you narrow your search down to specific date ranges and updates automatically showing what maps are available from their collection of links. I’ve been pleasantly surprised at…

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And now for something completely different …

0, Groton, MA 01450

How’s this for an idea. Buy a great big New England farm–Hillbrook Orchard. Raise organic-fed, happy chickens, cows, sheep, pigs, horses, etc. Grow completely organic fruits and veggies in a sustainable, green manner. Sell the fruits, veggies, eggs, fresh milk, homemade butter, and fresh, non-processed chicken and pork at our local farm stand. Operate a community-supported agriculture delivery service, much like one run by Fulton Farms.

Here’s the twist. This farm would employ people with developmental disabilities, with a focus on employing individuals dealing with Autism Spectrum Disorder (but not to the exclusion of other disabilities). During non-work hours, folks from the local community are invited to hang out at the farm, see the operation, pet the animals, and perhaps befriend one of the employees. I’ve seen a variation of this concept work quite nicely at Easton Farm Park in Suffolk, England.

Now to find the start-up capital!