I’m reading Sally Patton’s excellent book, Welcoming Children with Special Needs: a guidebook for faith communities, and as good as the book is, I can’t help but think that my kids aren’t in there. ‘My’ kids being the kids I work with, the fragile, very-medically-involved, severely-delayed kids. So I thought I would write a little primer on how to welcome them.
Life with a child with special needs, as anyone knows, can be very difficult. But some disabilities are more difficult than others. Rare syndromes, diseases and chromosomal abnormalities often lead to children who are severely disabled and medically fragile. We’ll call them ‘complex’ kids. Below, I offer some suggestions on how to welcome complex kids to your church and make their families feel at home.
First of all, don’t be afraid. These kids can look somewhat frightening at first. They may be very small for their age and very skinny, or have faces and bodies that do not look like the faces and bodies you are used to. They may make strange noises or cries. They may be hooked up to all sorts of fancy machines. But unless their parents/caregivers are telling you to call 911, the kid is probably fine, and you should welcome them just as you would any other family, with a generous heart and an open mind.
Staring is rude, we all know that, but so is making comments like ‘he’s small for his age, isn’t he?’ The family has heard all of it before. Inquire gently about the child’s condition on a need-to-know basis, and trust that the family will tell you more if they need to. Don’t expect the parents to be a talking encyclopedia – when they say their child has Cornelia de Lange syndrome, just Google it later and spend your time connecting with the family, not questioning.
Offer assistance, trying to anticipate what might be helpful and remember to ask before making assumptions about what the child or the parent needs. It can be awkward to always have to ask, and many parents get used to doing everything themselves and not asking for help. Taking care of complex children is a 24-hour job, and going to church should provide a break for the parents, and a chance to replenish their soul.
Start with the physical needs. If your church isn’t accessible, figure out how to carry a wheelchair up the steps. Provide a place in the pews for a wheelchair or for a child to sit on the floor, if that is what s/he prefers. And this may seem small, but it is actually a big one – provide a place to change the diaper of a person older than two. Many times families have to resort to the back of their car, which can be very hard to maneuver in.
Children with complex needs may eat a chopped or pureed diet. They often need to be fed, or may rely on a feeding tube. It is not hard to feed anybody, so at coffee hour it would be nice to do so if the parent is okay with it.
One thing that I have noticed about ‘regular’ kids is that they can go anywhere without much equipment. Complex children do not have this advantage. They often tote around huge bags filled with emergency supplies. Ask if it would be helpful if the church could set aside a spare cupboard or closet, where the child could put a box with some supplies that the parent provides so that they do not have to bring everything to church and back every Sunday.
Ask the parents what they want their child to get out of church. Some children might be best sitting in the sanctuary with their parents for the service, if they truly would not be able to participate in the children’s activities. Others could participate with a helper.
Accommodations for a complex child in RE would be the same as for any other child with special needs, and I refer to Pattons’ book, specifically the chapter on intellectual disabilities and physical disabilities.
Some complex children understand everything you say. Others are so brain-damaged that they understand little. All, however, will understand tone of voice (unless they cannot hear) and attitudes towards them, as will the family. Families with complex children are used to being stared at and treated rudely, so it is important to treat them with dignity and respect, and acknowledge that they are doing the best for their child and that they know what is best. Ask them the best way to communicate with their child, whether through pictures, signs or talking. All children communicate in some way, even if it is just through smiles and laughter.
Families of children with lissencephaly, mitochrondial disease, osteogenesis imperfecta, deaf-blindness and a host of other conditions live in a world that is very hard for the ordinary person to imagine. It is a world filled with small sorrows and small, hard-won victories. Where a good day means one with just five seizures, not ten, and where a smile is worth more than a pot of gold. By welcoming these families and their children, UU’s can lessen their sorrows and increase their joys.
Complex Children E-Magazine offers more information.
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