They are not saints, they are not superhuman and they are not perfect. The parents of children and adults with developmental disabilities are just ordinary people. They come from all walks of life. They can be wealthy, economically deprived or part of the middle class. They can belong to any religious faith or have no affiliation whatsoever. Their ethnicity is meaningless. They can be liberal, conservative or moderate in their political views. They can be any nationality on earth, and their age can fall anywhere over a span of six decades. However, they do share one special bond that other parents may not understand. They have faced a serious, sometimes frightening, diagnosis regarding their child that has led them to a deep appreciation for what is truly important.
They have been tested, and they have risen to the occasion.
For some, the life they lead was a choice. They lovingly made the decision to adopt a child with a disability, or they courageously decided to go ahead and give birth to their baby after a diagnosis of Down syndrome was made. But many were thrust into this role with no advanced warning and with no idea about what the future held for them and their loved one.
To go from the hopeful expectation that a baby would have no health issues, to the realization that a son or daughter could have lifelong challenges to deal with, creates a torrent of powerful emotions. Mothers and fathers handle these intense feelings in different ways. Some immediately welcome their child into their families, without regard to the changes that will be brought into all of their lives, while other parents struggle to adjust to their new reality.
It can be a difficult time as they face a future that is quite different from what they expected. The adjustments they are forced to make in their own lives and in the lives of other loved ones are just the beginning. All of their plans have been permanently altered. There is no going back to “before”. Most of the decisions they make in the years ahead will hinge, at least in part, on how they will affect their child. A day will not go by where they can completely forget about the responsibility that has now been given to them.
It is a pressure that rarely subsides because raising a child with an intellectual challenge is not an easy road. There are moments of pure frustration and searing anger along the way. For some parents, there are times when they just don’t understand why they have been placed in this position. They feel like giving up. They believe that caring for the particular needs of their child is adversely affecting the rest of their family. These are all genuine emotions that are completely valid. To have these thoughts is not wrong. To have doubts and worries is not wrong. To sometimes wish that your life was simpler with fewer constraints is not wrong. It just means you are having human reactions to what, at times, can feel like overwhelming circumstances.
But for all the difficulties and heartaches, there are many other moments that make the tears, the frustrations and the sacrifices more than worthwhile. When a child begins to communicate either verbally or in some other creative way, when they become ambulatory with or without the need for physical supports, when they begin the educational process and when they are older and they find employment, these and many other milestones are celebrated with intense pride and unbridled joy by the parents who played such a crucial role in making them happen. But above all else, the one thing that makes the journey of life with a child who has special needs so rewarding is the love.
There is a purity of affection that an individual with an intellectual challenge has for a parent. There is a complete and total trust between that child and their mother and father. It is a bond that will last through all of their lives, and it will provide them with the strength, the willpower, and good humor to face the many obstacles that society will place in their path. For each child that you see accomplishing more than was ever expected, there is a loving mother, father or both who made incredible sacrifices to ensure that their son or daughter received the education and supports they were entitled to. When an adult with a developmental disability is able to lead a life that is enriching, they have, for the most part, accomplished this with significant parental help.
In the end, it comes down to this; two human beings create a third. The result of that union, no matter how society may label them, is a beautiful baby that has the same rights as anyone else. Whatever medical or psychological terms may be applied to that child as they are growing up, the fact remains that they are a living breathing person who deserves to be loved. When it comes to their worth as a human being their IQ does not matter. Their motor skills are not important and their cognitive abilities are meaningless. They are simply someone who is alive at this moment, on this earth, with everyone else. They deserve the same opportunities, as we all do, to live the best life possible, which includes being safe and healthy. A good deal of this will be accomplished through the dedication and devotion of their parents.
The men and women who nurture and support their children from birth through adulthood know that it is a commitment of pure love. The parents are the unsung heroes who often remain in the background gently guiding their children as they struggle for acceptance and success. Their reward is the knowledge that they have given their all to see that their child is living the best life possible. Because of those efforts, they deserve our admiration and respect. In most cases it was not a life they volunteered for, it was just the life that was handed to them, and they responded with courage, honesty, patience, goodness, and compassion.
We should all embrace those characteristics because they represent the very best of humanity.