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August 10, 2013

They are not saints, they are not superhuman and they are not perfect. The parents of children and adults with intellectual challenges 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 6 decades. However, they do share one special bond that other parents may not understand. They have endured serious life altering experiences with their loved ones, while at the same time they have developed a deep appreciation for what is really important in life. 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 developmental disability, or they courageously decided to go ahead and give birth to their baby after a diagnosis of Down syndrome was made. But many mothers and fathers were thrust into this role with no advanced warning, and they had no idea what the future held for them and their loved one. To go from the hopeful expectation that your baby would be perfect, to the realization that your newborn will have certain challenges to deal with for its entire life, is a powerful combination of disappointment, anger, fear and finally an acceptance of who their child is. Some parents handle this torrent of emotions better than others. Some immediately welcome their child into their families without regard for the changes that will be brought into all of their lives, while other parents go into a form of denial and refuse to believe that their child cannot somehow be made normal with enough effort and sacrifice.

However they react, there is a full range of human emotions that any man or woman can go through when they find out they are now the parent of a child with developmental disability. It is just the first of many times in their lives when they are going to face a reality that is different from what they expected. The adjustments they are forced to make in their own lives and in the lives of other family members are just the beginning. Their future has been changed forever. 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 a 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.

Unfortunately, one of the most serious issues that must be dealt with is the safety of their child within society itself. Parents of those with developmental disabilities rightfully feel protective of their children, but they also know that they cannot completely shield them at all times from those who are cruel and insensitive. It is the agonizing realization of each parent that their child could become a target for verbal and even physical abuse and that they have to be constantly on guard to make sure that their child is not placed into an unsafe position. It is a sad commentary on the world we live in, but it is a fact that there are individuals who will take advantage of a trusting child or adult if given the opportunity.

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 for they represent the very best of humanity.