Parenting a child with special needs is living with the beloved child you have and not the one you had imagined.
One day recently my son, Elias, leaned over the dishwasher and called out to his dad, “Why aren’t you voting for Bernie Sanders? He’s the one who is going to make it possible for you to have enough money to save for college. I just read an article in the Atlantic that said the average American doesn’t have $400 in a pinch. Bernie can change that…”
My sweet Eli with the insatiable mind, hungry for data, reading voraciously, making cosmic connections and engaging adults. This is the same boy who on a typical morning getting ready for school gets lost upstairs when sent up to brush his teeth, recently learned to tie his shoes, drops copious amounts of food on the floor when eating, and doesn’t notice if his clothes are on backwards. It’s the same boy who puzzles over one sheet of math, mind wandering, unable to concentrate or summon working-memory for his times tables. One delicious, delightful, and disabled boy all rolled into one.
When we first brought concerns to our pediatrician it was difficult to pinpoint what made him different. And as a mother, I would point to my intuition and know there was something different about him. Thankfully, God blessed us with two more children. And, indeed, through parenting them and him, I knew that it was more than intuition that justified my concerns. I saw right before me the difference between neurotypical children and those with special needs. After a run-around with a public school that was unwilling to meet his needs, testing by a neuropsychologist confirmed three different diagnoses and we were able to move forward to address Elias’ needs.
I know all parents worry about their children. And yet, a parent of special-needs child worries about their child in a different way. (This worry is somewhat like having an auto-immune disorder, which is always there, but sometimes needs attention.) We know that our primary vocation is to love our kids and raise them to independence. With a special-needs child, we know we can do the former. It’s the latter that keeps us in the work of appointment scheduling, therapy sessions, and teacher conferences. We live in that liminal place of anticipatory grief—not sure that our child will go to college or leave the nest. Yet, always pursuing these American ideals.
As a Christian parent, I have framed the raising of my son and my other two children in light of God’s goodness. This is not to say that I minimize the absolute frustration of the days when meltdowns were so bad that all the furniture was rearranged, but I do ground my life in the belief that nothing separates us from the love of God in Christ Jesus. And because of this, even in my moments of despair, I am reminded of the 23rd psalm which states, “I lack nothing.”
The second thing we do is honor Elias’ existential questions about why he was made this way. We have tried to explain that we all are made in the image of God. But, because we live in a world that is not perfect, there are parts of us that don’t work perfectly. And, yet we emphasize that all of us, including mom and dad and brother and sister, are working on something — as we become imitators of Christ.
Third, I try to ground my children’s identity in their baptism, and ultimately, in the Christian faith and life. We do this specifically by celebrating the anniversary of their baptism and opening their baptismal box remembering all the people that were there with them when they became members of the body of Christ. We cultivate their relationship with their godparents so that they truly know there is a great cloud of witnesses who love them and care for them. And, we also pray for those godparents each night, etching them into our breath before we sleep.
And most importantly, our children know that the church is a great source of strength and belonging for them. Both my husband and I are priests, working in two different parishes, so I have never done any intentional advocating on behalf of my son. But I suspect that parishioners who are emotionally intelligent know there is something quirky about my boy. And despite this, he carries a torch and leads a procession in worship. He greets people as they come into the church and delights in singing in the youth choir. He needs his church, and his church needs him.
Raising a child with special-needs as a Christian may be a path peppered with more patience and ambiguity, but ultimately we hope that each child will have:
an inquiring and discerning heart, the courage to will and to persevere, a spirit to know and to love God, and the gift of joy and wonder in all God’s works. – Book of Common Prayer.
[Image credit: Pixabay. Creative Commons 0, Public Domain.]
How do you keep faith with the children you have – not the ones you imagined?