It’s important for parents of children with disabilities to remember that they have a right and a duty to carve out sacred space for themselves. Many things change in the aftermath of having a special-needs child; some things do not. First and foremost—God still loves you, and you still have a need for intimacy with the Divine. These words of Saint Augustine are still true: “My heart is restless, and it will not rest till it rests in Thee!”
Okay, so what can you do to keep your sanity during Mass when your whole focus seems to have shifted to damage control and putting out fires? Here are some suggestions.
For starters, I recommend that the child who is disabled sit in between both parents so he or she can’t wander away. Maintain physical contact in the pew, including deep pressure or whatever sensory input tends to calm your child. Keep the immediate environment clear of objects that could be thrown, torn, tapped, or tossed. Keep your youngest nondisabled child next to one of you so that he or she does not feel neglected.
Should edibles be used? This depends on their effectiveness for the child and on the parents’ comfort level. I’m not talking about giving your child a hoagie sandwich that leaves trails of crumbs and olive oil on the kneeler. However, a Tic Tac or other breath mint can be very effective and leaves no mess. And don’t neglect simple praise. My wife and I get a lot of mileage out of such phrases as “Very good sitting, Danielle,” and “quiet hands.” We put such phrases on picture cards to quietly show our daughter and not be disruptive with too much talk.
Repetition and practice improve your child’s ability to behave at Mass. Something as simple as sitting in the same pew each Sunday, following along with a picture missal, and physical contact, reassurance, and judicious prompting can work wonders. Learning happens. Repetition and ritual can work for you here. Children with autism often develop rituals in order to minimize novelty and uncertainty for themselves. It just so happens that our liturgy is built on ritual and repetition. Repeated exposure to the rhythms and patterns of the Mass will lead to familiarity, self-assurance, and increased tolerance for your child. This means that you can pay more attention and better immerse yourself in the prayer, music, devotion, and reverence of our holy and living sacrifice.
People with autism often compensate for their deficits by relying more on their visual sense. One way to capitalize on this is to use a missal containing picture icons. The picture missal that Mercedes and I developed and used successfully with Danielle is an example of this. It’s based on the Picture Exchange Communication System (PECS), where the child communicates by selecting laminated picture icons and attaching them with Velcro to a sentence strip. PECS is widely taught in special education classes and home programs.
Our picture missal has two icons per page. The first gives body position, and the second shows most of the major parts of the Mass. A parent helps the child hold the missal on the correct page and uses hand-over-hand prompts to point to each icon. Most of the time the child will move into the correct body position; if not, the parent gently assists the child into standing, sitting, or kneeling. Reinforcements such as hugs or squeezes should be used to strengthen successes. This helps give children with special needs the information they need to participate. It takes practice and persistence, but it is well worth it. Once a child knows what is expected of him or her, Mass becomes a whole lot more fun for the child, the family, and the other parishioners.
Excerpt from Faith, Family, and Children with Special Needs by David Rizzo.