The first time I heard a mother express that she prayed that her son, who had mental  retardation, would predecease her I was both shocked and alarmed. What appeared to be a parent’s worst nightmare had surfaced as a prayerful wish. Throughout my twenty years of professional practice these words have been spoken by so many parents that it no longer shocks or amazes me. However, these revelations do offer an opportunity to explore the ideas and assumptions which conger up such sad, fear provoking and otherwise horrifying imagery.

From the onset I’d like to say that the parents who have been so courageous as to reveal these innermost feelings are loving, responsible, kindly and concerned people. These sorrowful thoughts usually come at a critical point in counseling when the parents are revealing their frightful fantasies about their child’s plight after they, the parents, have passed away or have become incapacitated. It is no surprise that these words are invariably spoken with great emotion and tears. In group sessions, upon hearing such emotional revelations, fellow parents often concur with tears. I’d like to thank these brave parents for sharing their fears and fantasies. I know that younger parents who are reading this article will be comforted learning that fellow parents have wrestled with similar thoughts which have weighed heavily on their hearts and minds.

It goes without saying that in this context the wish to outlive one’s child is an expression of great love, concern and compassion. Can you imagine the selflessness of such parents who would choose to agonize through the ill-timed, out-of-order, separation of a child rather than bear the frightful thought of the child living without them? From my observations it is clear that these sentiments come out of:

The fears frequently expressed by parents fall into several categories. They are as follows:

As you read through these issues I am sure that you have some of the same or similar concerns. On the surface they appear to be reasonable fears about the plight of children who will need to be supported by others throughout their lifetime. However, as we delve deeper and really examine some of these worries we have found that some of them have underlying assumptions which may be unnecessarily gloomy.

Inherent in some of these concerns are belief systems about "my child," future care-givers, and society at large which may be unnecessarily pessimistic and which lack validation. Here are some such assumptions which require your reconsideration.

It is no wonder with assumptions such as these that parents may have the dreadful thought of praying that their child predeceases them. However, I wonder if these assumptions are an accurate reflection of today’s reality. Let’s take a look.

Now that we have been able to identify certain of the assumptions that are responsible for creating negative imagery surrounding your child’s life without you, it is only fair that we try to validate these assumptions to see if they are accurate. For example, is my child only lovable to me?

Many parents and adult siblings are surprised to find out that their loved one is admired by people outside their family. "Who would have imagined my brother having such a following?" exclaimed John’s* sister at his surprise 70th birthday party. John’s housemates and support staff arranged the party and his friends were delighted to come and celebrate with him. Guests included friends from work, present and previous support staff and a broad array of people who knew, admired and loved John. The biggest surprise was the sister’s surprise! As she so poignantly remarked, I always considered my brother to be just my own pain-in-the-neck brother. I had not stopped to think about all the people who cared so much about him. While John’s sister has been wonderfully involved in John’s life over the years, I am confident that this party would have taken place even if his sister were not available, because John is inherently a lovable person, and a great number of people care a great deal for him.

Throughout my years of working with people with developmental disabilities, it is clear that they have made enduring and loving relationships with people outside the family. A day rarely passes without hearing something nice that has happened to one of our people as a result of some other interested person loving and caring for them. It should be very reassuring to know that these friends also keep an eye out for your child and raise issues and concerns which protect their interests. I have been so privileged in my career to have met so many wonderful people who are genuinely concerned and loving of our clients. And it is not one sided! Our clients also are concerned and loving of their friends as well.

I am sure you will find it reassuring that many of other frightful assumptions are simply untrue.

On the other hand, in reviewing your own list of underlying assumptions you may discover a few which have high degrees of validity. In these instances we must ask ourselves, "Are the consequences of a possible mishap really all that devastating? One father recently reported how fearful he was that his daughter would get lost if she used public transportation. When pursuing further I asked what might happen if she did get lost. He replied with some conviction that something might happen to her. I asked him to externalize his fears:

Dad was initially unable to modulate or predict a more likely outcome of such a mishap. After examining the situation more realistically, he was able to conclude that in fact:

People who get lost almost always are found quickly and safely. In all my years working with clients, I have never known one to get lost with any serious consequence. (Even when I was working in New York City!) The overwhelming majority of people who might find someone who has lost his way recognize that there is a problem and assume a helpful and protective role. Believe it or not, many would-be jerks out there often become nice people when interacting with our clients. Isn’t that something?

Occasionally, our client’s feelings may get hurt as a result of a transgression by a coworker or neighbor. One young man reflecting back upon his classmates who occasionally made fun of him said with compassion, "I guess they didn’t know any better. If they had spent more time with people with mental retardation, they wouldn’t have been so foolish." You see, many of our people have wisdom and are able to rise above hurtful remarks or situations without falling into a lifelong depression.

Another interesting benefit of the community living movement is the emergence of natural advocates who come forth with helpful and caring observations of your child while they are at work, enjoying leisure time, or living as neighbors in the community. Just the other day an employee at a supported employment site raised a concern about our client’s level of satisfaction with his roommate. It turned out that there was a problem with the roommate and the necessary steps were taken to remedy the situation. We applauded this natural advocate for his vigilance and for bringing this observation to our attention. There are so many instances where people have come forth out of concern for your sons and daughters.

Life for people living in group homes or other supportive arrangements is, for the most part, rich with things to do and places to go. We never get feedback that our community residences are depressing or that people are treated poorly. On the contrary, our people’s days are bustling with things to do like going to work or to an enriching day program. Evenings are busy with dinner, chores and recreational activities. On the weekends, people generally visit friends or family, attend religious services, go out for dinner, participate in community events or activities - just about the same as you and me. Regardless of whether their parents are around, the day-to-day activity remains quite consistent.

Improvements can be made in everyone’s life. The same goes for our people. Not everything is perfect and the reality is that people with disabilities have to rely on others for some or all of their care and safety. For the most part, we have been able to demonstrate that we can provide a level of care which engenders a satisfying and wholesome life. However, the challenge we face as parents is to put into perspective the overall consequences associated with certain negative events. By placing things in perspective, one could generally feel comfortable knowing that not every negative consequence is going to have a devastating outcome. Our clients, like everyone else, have some resiliency!

The last area I’d like you to consider is the differentiation between possibility and probability. As we know from our work with people with obsessive compulsive disorder, there is an undue concern over the possibility of a devastating event occurring with little emphasis on its probability. For example, the compulsive hand washer is unduly concerned that they may have touched an object which will infect them so severely that they might die. Is this possible? Of course it is! The real question is whether it is probable. We all have to recognize the reality that one can only expect a reasonable amount of health, safety and security. Every minute of every day we are all susceptible to infections, violence, natural disasters such as lightning or hurricanes, or injuries from falls or flying objects. Our clients are no different. The real issue is whether our clients are in greater jeopardy and have they endured a higher incidence of these catastrophes. Our experience is that this is not so.

People who are anxious about such issues would like greater assurances. While this may engender more security, we often find these knee jerk reactions to take the form of excessive regulation. Sometimes the price interferes with the quality of life and creates programs which are unduly costly. Besides, do you really want your child to live in a bubble?

I would make some recommendations for parents who are having excessive fears about their child’s life following their own death. Many parents have found these to be helpful. I hope you will too.

Try to make the acquaintance (we can help) of someone who has outlived his/her parents. Observe if they appear to be having an enjoyable life. Are they safe? Are they clean and healthy? Do they have relationships? Do others appear to care about them? If their siblings are involved, do they resent this responsibility? You get the picture!

Try to resolve your concern about placing too much responsibility on your non-disabled children as it relates to the care of your loved one. Many parents are fearful of addressing this issue with the siblings, but silently hope they will look after their sister or brother once they themselves are gone. In my experience, it is a good idea to have a frank conversation regarding their availability as well as their intentions. While it will not work to force responsibility on them, we have found that many siblings have enjoyed assuming responsibility after their parents’ lifetime. One brother remarked, "I really became closer with my sister after my parents passed away. . . In some way caring for my sister has created a connection with my (deceased) parents which means a lot to me now." It is interesting that we hear about sibling responsibility in a way that is often so negatively framed by parents, "I do not want to burden my other children," however, the reality is that most siblings do not find it a burden at all, but rather as a fact of life, the giving of a loving relationship.

Learn to tolerate a certain amount of ambiguity. None of us are in control of things after our lifetime. Some go through very elaborate preparations in order to control things. While good planning is extremely important and will engender tremendous peace of mind, there is no limit to the amount of planning one can do in order to address every single eventuality. In such instances, one could become obsessional and become thoroughly consumed over minute details. As a result, anxiety will increase rather than creating peace of mind. Thus, it is important that parents deal with the reality that inherent to the concept of future is a degree of uncertainty. In order to deal with this notion effectively one must learn to tolerate a certain amount of ambiguity.

Try to recognize when you are making negative predictions about the future. Ask yourself if these events are likely to occur. If so, are the consequences likely to be all that devastating? Sometimes parents find that they are catastrophizing needlessly about the future.

There’s no substitute for a good sensible plan. If you are concerned about a sudden incapacitation or death, create an emergency contact and short-term care plan. Communicate this plan with people who are likely to be nearest to your child at the time of an emergency, such as a family member, residential or day provider. For more long range planning, meet with an attorney who has experience making arrangements for children who have disabilities. Issues such as plenary or limited guardianship, trusts, wills, and supervision will need to be considered. Some organizations provide advocacy services for parents who wish to make special arrangements for their children.

HARC will be available to assist you as you contemplate these difficult issues. It is our hope that the progress we have made in our 45 years will serve to comfort you by relieving many of your fears about your child’s well being after you’re gone.

Perhaps, Thinking the Unthinkable may need re-thinking!

Stephen Becker,Ed.D.

President/CEO