Paradoxically, the things people often think of first to say are usually the most unhelpful. Instead of prying into their plans for long-term care, you should be encouraging, positive, and, most importantly, hopeful.
There are many different ministries in the Church – some ordained, others not. A list of some of them that many people find rewarding might include peace ministries, working to help the poor, visiting those in prison, helping the sick, and so on. Perhaps there is a hidden ministry in the life-space of many: helping families with special needs children. In days of old, the more seriously handicapped of these children may have even been called the “poor in spirit.”
But how does one start to learn about what these children need? Sometimes we don’t make the effort because we are not sure of the right words to say. We fear we will be intrusive, or afraid we will say the something that will bring about the exact opposite of what we are trying to do. Since I have been on many sides of this topic as a parent, neighbor, and professional, I will offer my own thoughts about this.
There are several topics one should not bring up, and paradoxically, I have discovered that these are frequently the first questions someone will ask a special needs parent. I’m sure people are trying to genuinely learn and be helpful, but the following approaches can have the exact opposite effect.
First, avoid asking questions like, “What’s going to happen when your child is 21? Do you have him on the list for a group home?” Some parents will tell you this is the first thing people ask them. To me, it’s analogous to going up to someone and saying something like, “What’s going to happen to your spouse after you die? Have you made the right arrangements?” Or it might be akin to saying, “I see your Aunt Betty is getting older. Have you picked out a nursing home for her? What do you plan to do if she gets Alzheimer’s?” It amazes me that so many people pick the topic of something in the future upon meeting special needs parents.
Second, try not to get involved between special needs parents and their physician, teacher, or therapist. If a special needs parent notes that their child is on a high level of medication, please don’t suggest that the doctor lower it because such a high level could be harmful. There is a threshold to the effectiveness of many medications used, and lower levels simply may not work at all. In dire situations, high levels of medication can prevent severe acting out that includes fighting, breaking windows, running away, or other serious actions that can be worse than a medication’s side effects.
Third, even if you are an expert in natural herbs, vitamins, or problems in scientific studies with vaccinations, please do not suggest any of these approaches. None have been proven scientifically. It is between the special needs parent and the professionals with whom they work. Do not create false hopes.
Fourth, if a parent says that they are trying something such as a herb, vitamin, or avoidance of vaccinations, similarly keep advice – pro or con – to yourself. By reaching out to these kinds of treatments, the parent is in effect seeking to find some hope. It’s not good to take hope away. Saying something like, “These things you’re trying sound like they’re giving new hope; perhaps they will lead to something good” is a way of validating hopefulness while not giving advice.
Fifth, don’t ask about dating, relationships, or whether a special needs child will get married. Again, this is an extremely difficult topic for some parents; much is unknown about the exact right way to deal with it, and one should wait to discuss this until a parent brings it up.
The above are some ways to be sensitive and some ideas about topics that can stir up angst. What are some helpful things to do?