How long before Alex is ready?
By DIANA M. MARTIN
There is a boy I know. He is almost 9 years old. He puts his hands together and says, Amen when you say to him, Alex, say Amen at the dinner table. He will sit in church for about 15 minutes on a good day, provided there arent too many people crowded next to him in the pew. He will look up every now and then from the stickers and Play-Doh that his parents have given him to keep him engaged and make a few high-pitched squeals. They will smile and whisper, Shhhh. Soon it will be time to go.
Alex is severely autistic. He attends a private school and has an adult assigned to him at all times. His mother made an altar in the den of their townhouse, and every night she plays a preschool music tape of Bible songs. Alex listens. They light a candle. Alex can point to a plastic figure of Jesus and put the rosary over his mothers head. He is not afraid to hold the cross and take it off the wall. His IQ is under 70. Will he ever be able to distinguish the body of Christ from bread? That depends on whether or not you believe in miracles.
In 1995, the U.S bishops issued Guidelines for Celebration of the Sacraments With Persons With Disabilities. This document states that pastoral practice with regard to the celebration of the sacraments varies greatly from diocese to diocese, even from parish to parish and that inconsistencies often arose from misunderstandings about the disabilities. The document was to help parishes clarify how they could include people with disabilities within the church. But the document has only caused further confusion.
The criterion for reception of holy Communion is the same for persons with developmental and mental disabilities as for all persons, namely that the person should be able to distinguish the body of Christ from ordinary food, even if this recognition is evidenced through manner, gesture or reverential silence rather than verbally. The document goes on to offer anecdotes about how severely mentally retarded children have shed tears at the site of the Eucharist and gives examples of pastors witnessing people with disabilities having adequately demonstrated what the document refers to as the use of reason thereby justifying in the pastors eyes a readiness to receive the Eucharist.
When it comes to receiving the Eucharist, pastors must rely on their observations and interactions with the child. The use of reason is measured through relatedness. Achieving a connection of this sort can be difficult for children with autism because they often lack the social skills necessary for these interactions to take place. In fact, social interactions can be so severely impaired that the child seems largely uninterested and unresponsive to people. Many individuals with autism do not make eye contact with others. This does not mean that they do not see.
Parents who have children with autism do not stop celebrating their childs birthday because he/she does not understand that is the day they were born. They celebrate by singing, This is the day the Lord has made, let us rejoice and be glad. Children with severe autism take the bus to school every day. They may not have the use of reason, but that does not mean that they do not get books. Society doesnt say to them, Wait until you know what a school is, and then you can come in.
Typical children receive the sacrament of holy Communion in second grade. If a second grader has the use of reason, then how long will it be before Alex catches up? How long will it be before his family can find a religious education class for special needs children that will accept him? Not all parishes can accommodate special needs children, especially those who are severely impaired. Many times parents have to rely on homeschooling or must travel miles outside of their parish to find a suitable program. Often the child cannot handle the stress. Parents end up dropping out of the church altogether or finding an alternative religion that better suits their needs.
This child I write about was baptized in October 1993. One hopeful note is that the Guidelines for Celebration of the Sacraments With Persons With Disabilities states that cases in doubt should be resolved in favor of the right of the baptized person to receive the sacrament. The existence of a disability is not considered in and of itself as disqualifying a person from receiving the Eucharist. Tell that to Alexs mother. She is currently reviewing A Communion Program for Persons with Developmental Disabilities, by Fr. Ray Chase. Available through the Baltimore archdiocese, it is an eight-week program designed to meet the needs of both mild and profoundly developmentally disabled individuals. Once the program is completed, she will try again to see if Alex is ready. She will ask the priest who baptized her son, who is now a chancellor, for the second time to reconsider. She will contact her diocese and parish to see if they will make an exception. And she will pray that someone will have the use of reason to do what is right by her son.
Diana M. Martin is a freelance writer and author of A Parents Survival Guide, a resource guide for parents of children with communication and social interaction delays. She lives in Rockville, Md., with Dan, her husband, and Alex, her son.
National Catholic Reporter, July 5, 2002