By Joy Zainey, Contributing writer
Joy and Jay Zainey have three adult children – Margaret, 38; Christopher, 35; and Andrew, 29. Andrew has autism and is non-verbal, and the Zaineys have encountered challenges every step of the way, not the least being the sometimes cold reactions Joy and Jay get when Andrew is in public and makes loud noises.
The Zaineys were the founders of God’s Special Children, which celebrates Mass on the first Sunday of the month at 2 p.m. at St. Francis Xavier Church in Metairie.
The Clarion Herald asked Joy to reflect on the challenges of rearing a child with special needs and to offer suggestions to other parents on how they can raise their children with an awareness of and compassion for persons with disabilities.
- As a parent of a special needs child, could you identify some of the biggest obstacles you face when dealing with well-meaning people in public situations?
Andrew, in particular, makes a lot of noise at inappropriate times because he does not speak. He is nonverbal, and noises are way of communication for him. One of the biggest challenges is when we’re around people who don’t know how to react, and they pull their children away because they’re fearful. It’s hard to describe. You know and your children know Andrew’s not going to do anything, but people are afraid. It makes everybody uncomfortable.
- What’s the nicest thing someone ever said to you with Andrew in a social situation?
Sometimes people will say, “He looks very happy”; “He’s very handsome”; “He looks very loved and very well cared for.” One of things I would rather not hear is “God doesn’t give you more than you can handle.” People mean well – that’s the hard part – but they just don’t know what to do or say.
Handling the challenges
- What’s the most challenging situation you have faced in public, perhaps even at church?
One of the toughest things is when people are staring. Obviously, Andrew is disabled. Rather than just giving a loving look, they’ll give you a look that says, “Why don’t you just take him out? He’s making so much noise.” We resolved that problem because St. Francis Xavier Church (in Metairie) has a wonderful area where we can take Andrew and still hear what’s going on at Mass. The really interesting thing is when we walk into the body of the church to receive Communion, Andrew quiets down. It’s like a miracle. He walks in as quiet as he can be. We break off a piece of the Host to give to him. He swallows it and is so quiet.
- Why is a welcoming community at a Catholic church so important?
Oh, my goodness. The Catholic faith teaches us to bring all children into the world. When we bring our children into the world, we hope and pray we get the acceptance from bringing our children into the world, and that’s not always the case. We need to lean on our faith, because sometimes that’s the only thing you have to lean on.
- Who or what has inspired you to persevere despite the challenges?
When our older two children were young, we always wanted to attend Mass as family. When Andrew came along – after his baby stage – it was next to impossible to bring him to church. He made a lot of noises and didn’t want to sit still. We missed that worship together as a family. It felt like people’s eyes were on us, and that caused us to stop going as a family. We still wanted to attend church together because we wanted to let Andrew have a sense of a worshiping community. Andrew did not attend Catholic school, and he had no sense of a religious-based community.
- What strides has the Catholic Church made in being more inviting to families that include special needs children?
I must say that in the Archdiocese of New Orleans, Archbishop Aymond has been an angel sent from above. He has just been so accepting and willing to listen – not just listening and saying, “Uh-huh, uh-huh,” but truly getting behind us with our efforts with the God’s Special Children Masses. We try to show our children their true dignity and their place in the church. Father Mike Mitchell has been unbelievable as well. His homilies at the special children’s Masses show the love he has for the children and their families.
- Do you have a favorite Bible verse that speaks to you when you feel emotionally or spiritually drained?
I love reading Isaiah 49: “Can a mother forget her infant, be without tenderness for the child of her womb? Even should she forget, I will never forget you. See, upon the palms of my hands I have engraved you; your walls are ever before me.” I also go to the Memorare. And I love the Gospel passage where Jesus says, “Let the children come unto me.”
- What blessings has Andrew brought to your life and to the lives of your husband and other children?
He’s made wonderful adults of my older two kids. They’ve seen what it’s like to struggle to accomplish small things, and they are thrilled when Andrew accomplishes small things. Both Margaret and Christopher are very, very compassionate adults. My daughter expects more of her children – and they’re very bright. They are 8 and 5 years old, but they have learned from Uncle Drew about compassion and patience. Andrew is very autistic and isn’t warm and fuzzy at all. He towers over my little grandchildren, but they love their Uncle Drew. I just found out our 8-year-old is receiving an award at school for being compassionate. The little one has taken on a couple of kids in his class who are having a little trouble learning. His teacher says he’s very bright and always helping out. My son Christopher and his wife are volunteer coaches for special needs kids who play baseball and basketball. Having a special member of the family makes you appreciate so many things that you would normally take for granted. Both Margaret and Chris brought over their friends from high school and college to the house, and so many of them have come to know and love not only Andrew but all those with disabilities. Some of Chris’ friends became volunteer coaches with special needs kids because of Andrew. Another one of the blessings of my life is when family members and friends call me up and ask me to pray with Andrew for a special request or intention that they have. They all feel as though Andrew is their special angel who lives with us.
- Do you have a few suggestions on what people should say or not say to parents with special needs children?
Please don’t say “God never gives you more than you can handle.” Oh, really? Have you gone all night without sleeping and you’re changing diapers and he’s not a child anymore? That’s not really helpful. Sometimes people say they “understand.” I have a brother who said that, and I told him, “You know what, you don’t understand. Don’t say that again.” You can’t really say that to a stranger, but my brother understood. People will ask if Andrew will get upset if they hug him, and that’s appropriate. Maybe a young parent with young children could say to their children, “This young guy here is special because God made him very special. God loves him.” That would help young children who don’t understand. You don’t want to feed into their fears.
- How can we raise our children to have a greater awareness of and respect for children with special needs?
We can use every opportunity as a learning opportunity. Everyone is unique and is dealing with different things. If your kids see someone in a wheelchair at the grocery, you can use it as a learning opportunity because I think fear is born from ignorance. God made each of us different. That’s why we all have different names. Another thing is never to speak over the head of someone who is disabled. Speak to the person directly. It’s not out of malice, but people just don’t know what to say sometimes. We need to always explain things to our children because they’re our future.
For more information on God’s Special Children, go to www.godsspecialchildren.org.