Diving in from the fringes
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?
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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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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
Wow – that’s a loaded question.
I wish I knew that we’d lose friends and some family who feel our non-disabled child would have been better off not having a sibling with special needs.
I wish I knew that being an advocate for my child means also taking criticism from friends, family, and strangers about having the audacity to discuss their struggles in public.
I wish I knew that I would have to become a pharmacology expert, educational expert, medical expert, and legal expert in order to get my special needs kids the help they need and deserve.
I wish I knew that other special needs parents are more helpful, more knowledgeable, and more willing to share of themselves than any doctor, teacher, or other professional, and to ask questions of my peers before taking what any professional says at face value.
Thanks for being so candid. This is truly helpful!
I wished I had known, like Chrisa, that I’d have friends pull away from us. For whatever reason, I wished I would have even considered it.
I wish I had known to throw out the baby development books earlier. My kids had new milestones – theirs alone to meet on their own timeline.
I wished I had known I could stand up to doctors. I was a couple of years in when I found my voice.
I did this and I tell people this all the time – but I kept one day – for many years, that we didn’t schedule anything remotely connected with their health or development for one day a week. No therapy, no appts. NO EXCEPTION. They needed time off and we took great pleasure telling people “no, we don’t do any appts on that day!” The kids loved it too!
I *love* that idea of not scheduling anything one day a week. I’m the type of person who feels overwhelmed if I have something every day, and that type of thing never ever occurred to me.
Shannon,
Congratulations on the impending adoption of your daughter! I am also an adoptive parent (of 2). We entered our second adoption process knowing we wanted to adopt a Deaf child.
You are probably better prepared than I was, given your work, but I will still say: I wish someone had told me that it turn my life completely upside down. This is not a bad thing, but it sure was a hard thing.
In addition – and this was a big one – no one told me that, even though we deliberately set out to adopt a child with this need, I would still go through a mourning process. I admit I second-guessed myself when I realized I was mourning, and then I felt guilty for second-guessing. What a cycle.
The last thing I wish I had known was the more connected I was to the community of people managing similar issues, the easier it would be to get integrated once my daughter came home. You may already know these folks, but the more you can reach out to them in advance and be familiar with the constellation of resources available in your area, the easier it will be to access them when you come home with your daughter and really need these resources.
Good luck! I can’t wait to hear more about your journey.
We started reaching out to others in the CP community in our area, but you’ve encouraged me to keep doing so. Thank you!
And I’ve been wondering about the mourning aspect. I was caught off guard by a bit of that when I was looking through baby items, looked a potty seats, and realized that I don’t know if Zoe Amanda will ever be potty trained. I figured that we wouldn’t mourn over little things like that, since we knew about her diagnosis at the same time that we found out about her unlike other parents who are caught off guard by a diagnosis. Thanks for mentioning that you have experienced some of that too.
Congratulations! We brought home our SN daughter in December. She was born at 33 weeks and has a limb difference. It’s all very new, and I can share what I didn’t expect…
I didn’t expect how quickly I would redefine SN, seeing my friend and her adopted son struggle with behavioral/intellectual disabilities– my daughter just became a baby with a difference. I didn’t expect to meet a roomful of babies who were dying, and how that would change my sense of gratitude. I couldn’t have imagined I would celebrate the fact my daughter has a thumb- a life-changing advantage. I never could have imagined being peaceful knowing cruelty lies ahead for her that doesn’t for my bio, non-SN son, or that I would be OK with his discomfort and able to silence those who didn’t want him rattled. I didn’t know how I would suddenly see those who move/look differently but think brilliantly, who might be hidden away and need to be found. I wish I’d known how parenting her would radically change how I parent him- and how that decision would distance me from friends and family. I didn’t expect that after praying for a perfectly healthy biological baby, God sent me a perfectly matched baby who I don’t just love, but I am in love with. Ultimately, I am surprised to find I can experience tremendous joy and pain in the same breath and be blindingly grateful for the depth of that experience.
This is beautiful, Elizabeth. Thank you for sharing.