What ever made me think that Shelby could not have an enviable life? Have you ever thought about your child having a life to be envied by others? I never did. I knew Shelby could have a happy and well-cared for life but I mistook these things for "an enviable life." I didn't even know I had this mis-belief until I started taking workshops for parents of special needs children where I met older and more experienced parents who are giving their kids enviable lives.
In Massachusetts there are several organizations that provide training and resources for parents of special needs kids; two of which are the Federation for Children with Special Needs and Massachusetts Families Organizing for Change. I've learned about basic rights in special education, have completed an Advocacy Boot Camp, will take classes on IEPs and communicating at IEP meetings, and am in the beginning sessions of a Family Leadership Series.
I've been transformed. What I am learning will rock Shelby's world, starting with this new-to-me concept of "an enviable life", a phrase for which I can not take credit. I could get in to the reasons why I never considered this for Shelby, but I think it comes down to I just didn't know. But now I do know and I want other parents to be empowered, to desire, and to create an enviable life for their kids too. Again all this is new to me, new like within the last three weeks new, but here are three ingredients for Shelby's enviable life (there are probably more for this list but I haven't learned them yet).
- Shelby now has a vision statement. Yes I have written this for her—when she is able to communicate her wishes she'll write it herself—but for now as her mum, who knows her pretty well, I've written what we want for her in the next five years. Her vision statement has a few goals along the way too. This vision statement will be front and center at IEP meetings, when making medical decisions, or choosing extra-curricular activities. We will think about what Shelby would choose for herself.
- Shelby will do anything and everything she wants to because she is Shelby first. Shelby is not her disability first. Believe it or not this is new to me, maybe in part because she's only two and for these past two years we've had so many medical issues that it's kind of hard not to see her as Shelby with CHARGE syndrome. This is changing.
- Shelby's opportunities will be the same as any other kids. She will have no limitations, only accommodations. For example: We buy our dog food at a local farm store that has bunnies and chicks in pens through out the store. There are signs indicating that they you can pet the animals but not to pick them up. What I would have done three weeks ago was crouch down in front of the bunnies and describe them to Shelby, let her see them close up- because after all the sign says I can't pick them up- while right next to her her sisters reach over the cages down in to the pens and pet them. But now I know that's not good enough! She is missing out and she doesn't have to. The next time we buy dog food I'll still describe the animals but I see I have two new options, I can lower Shelby down in to the pens (that's a little kooky but an option) or I can have staff accommodate for her, hold up a bunny for Shelby to touch and pet just like my other daughters. I now see the huge difference between the two scenarios. Now I know Shelby can have the same experience as her sisters, as she should.
I know within our WonderBaby world there is no judgement and it is a little scary putting something like this out there that could be misconstrued as "I had no faith in my kid" or "I didn't think my kid was capable of anything." I am exposing my ignorance because even though I love Shelby deeply I honestly didn't know the difference between a 'happy life' and an 'enviable life'. And if I, as Shelby's loving, passionate, persistent, and educated mum didn't know then there must be others who don't know as well.
Shelby deserves an enviable life because she is my daughter, a little girl perfectly created by God, just like any other kid, just like your kids. I want to encourage all of you to start pursuing leadership training and learn for yourselves. My little post here does not do justice to all that I'm learning. It's amazing and freeing to know that Shelby can have an enviable life, that Shelby is not her disability first—and that my friends is something else I am learning about and another topic for another blog post.
Nicole Feeney writes about how God grew the Feeney family from two to four to five in two quick years... and the subsequent adventures on her blog, Fab Feeney Five.