Most of the time, when I sit down at my computer to write for Accepting the Gift, I begin with a “tidy” end in mind. My first child with special needs was born almost twenty years ago, and my second over twelve years ago, so I’ve got a great deal of experience under my belt and can usually take things I’ve learned and tie them to a feast day or a Gospel message or pro-life message or some other something that fits neatly into the purpose of Accepting the Gift. But today I’m tired and a little disheartened, so I hope you’ll bear with me while I pour out a little of my heart to you.
Over the past (almost) two decades, I’ve given a lot of thought to Jesus’ public ministry - particularly the many instances where he healed the lame and restored sight to the blind. I have often wondered if the stories of these miracles actually contribute to the way people with disabilities are marginalized in our society. If it was so great that Jesus “fixed” what was “wrong” with them, then being blind or lame or (fill in the blank) disability must be…bad, right?
Of course, one answer to that question is that Jesus was setting an example for His Church. If you minister to people’s physical needs first, then you can better support them spiritually. We see this play out all around us - crisis pregnancy centers, hospitals, food distribution through Catholic Charities, and so on. Many of you have probably donated your time or money to support these works.
But what about families with children who have special needs? Are our churches accessible for wheelchair users? Most probably are - because the ADA mandated it in 1990. What about deaf or hard of hearing (HOH) children? Do we offer assistive listening systems or sign language interpreters? Some do, yes, but it is a priority?
What about children on the autism spectrum, those with Down syndrome, or others with cognitive differences? That’s where things start to get a little bit uncomfortable. You may know of neurodiverse children who were denied first communion, though I think those cases are pretty rare. My son, who has Down syndrome, was not denied his first communion and was fully included in that sacramental education year, but it took three tries before he was able to complete a full week of Vacation Bible School. Not great.
The first time he dropped out of VBS, I blamed myself for not adequately preparing the volunteers. The second time I did my part, including making sure his older sister was able to volunteer with his class as a backup aide to help keep him on track. After the first day, the volunteer (who was a retired special educator) that was assigned to his class couldn’t be there and I was told, “We really don’t feel qualified and would feel much more comfortable if he has an adult with him. If you can’t come it would be best if he pass for today.” I spent most of that day in tears.
I don’t think my son was unwanted at VBS - truly I don’t - but as you already know if you have one or more children with special needs, anything we do with them is…messy. Activities that are simple and straightforward for other families are not simple and straightforward for us. When people (like our VBS director) assume that they aren’t qualified to teach our children, we need to remind them that we weren’t qualified to parent them, either, yet God gave them to us. We love them and we share the love of God and the sacrifice of Christ and the beauty of the Church with them in the best way we know how, and we trust the Holy Spirit to work in their lives in ways we can’t comprehend. In doing so, we sometimes discover that is actually we who are learning, while our children are the ones doing the teaching.
As I was mulling over how I could tie special needs parenting in with the Nativity of St. John the Baptist, I realized that his life really does have strong parallels with ours. He was an ascetic who ate locusts and wild honey and wore a garment of camel’s hair - not exactly a luxurious existence, even by the standards of his day. He was a messenger of God, sent to announce the arrival of the Messiah - he was even given the honor of baptizing Christ - but his preaching also landed him in hot water. While John languished in prison, his followers told him about all the great things Jesus was doing, so John sent them to ask Jesus if he was The One (was he asking for himself, or for his friends?) - and then there’s that whole thing about how he was ultimately beheaded by Herod. Again… not great.
John’s whole life was dedicated to God and austerity, working to wake people up from their spiritual slumber, and challenging authority by invoking God’s law. He got to meet Jesus, but pretty much everything else was a struggle. Maybe we, the parents of those who are easily overlooked, are destined for a similar fate - struggle, making attempts to get through to leaders (yes, even in our churches), and ultimately feeling like our efforts didn’t bear much fruit, but at least it was worth it because we got to meet Jesus. A closer look, though, shows us that John had not only a key role but a singular one, in the Divine Plan: his work prepared the way for Jesus. Likewise, the work that we do on behalf of our own children may prepare the way for other families to meet Christ.
Andi Sligh is a wife and mother of two children with disabilities and three dogs. She is a lifelong Alabamian, Dr. Pepper addict, Catholic convert, and former engineer who rediscovered a love of writing when she became a mom. You can find more of her writing at https://andisligh.com/