I’ve spent a decade on the fringes of this community. I’ve read special needs parenting blogs, led IEP meetings in English and Spanish, trained special education teachers, and designed church programs to include families affected by disability. A couple months ago, I even wrote a post here about disability and faith.
But at the end of the day, I could choose to disengage from the world of disability if I wanted to. Sure, a couple of chronic health conditions remind me that I’m not fully in the community not affected by disability, but on good days I can even forget about those diagnoses.
I can go to a park with my kids and not look for ramps or other measures of handicapped accessibility, like I did yesterday.
I can visit a church for my nephew’s baptism without worrying much about how my children will respond to that new environment, like I did a couple weeks ago.
And at times, though I’m ashamed to admit it, I can ignore it when people throw around the r-word and other hurtful words to the disability community because it’s not as personal to me as it is for the parent of a child with special needs.
Or at least I could do all those things. My world is about to change. In a few months, we’ll be formally ushered from the fringes of this community by a little girl named Zoe Amanda when she becomes our daughter.
She lives in a children’s home in Taiwan. She was born in October 2011 at 30 weeks gestation – ten weeks early – to a single teenage mom who couldn’t care for her. She has several small areas of periventricular leukomalacia (PVL) in her brain. Three leading pediatric neurologists in the US agree that her eventual diagnosis will be cerebral palsy. She was exposed to alcohol in the womb as well, though she doesn’t have any diagnosis of FAS/FASD at this point.
Knowing that we were planning to adopt a child with special needs at some point and knowing that I often advocate for adoption on my disability ministry blog, a friend of mine contacted us about Zoe Amanda’s need for a family. We thought it was crazy to consider because the timing and her age and her country of birth and so many other factors were different from what we planned. Despite those reservations, we agreed to pray about it because our Christian theology affirms the importance of adoption and the value of people with disabilities. And after a few days of praying for her, we realized that we were no longer praying for an orphaned baby girl on the other side of the world.
We were praying for our daughter.
So now after a decade on the fringes of this community, we’re all in. I’ll be blogging about our adoption journey here once a month. And I’d love to learn from y’all. I know we’re naïve about some of the changes our family will face. I’m sure we’ll feel ill-prepared at times regardless of how much advice we get, but I’d love any you have to offer.
So if you were me – a young wife and mom with a five-year-old daughter and a three-year-old son who will go to Taiwan with her husband in early summer 2012 to bring Zoe Amanda home – what would you need to know to be ready? In other words, what do you wish you knew before you became the parent of a child with special needs?
When she’s not researching all things Taiwan and CP in preparation for their adoption, Shannon Dingle is the mom to two young children, Robbie and Jocelyn, and the co-coordinator – with her husband Lee – of Access Ministry, the special needs ministry of Providence Baptist Church in Raleigh, NC. She writes TheWorksofGodDisplayed.com (and tweets about it here) to equip churches to welcome all the people of God, and she blogs about family and faith and life in general at Dinglefest.com.
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