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A Diagnosis

December 5, 2015

Every parent can clearly remember the exact moment they received the diagnosis that their child had an intellectual challenge. It is a point that alters your life because nothing will ever be the same. The diagnosis changes everything, for everyone, forever. A person can never go back to the life they had before they were given the news. 

Each mother and father deals with this altered reality in their own way. Upon getting the diagnosis that their son or daughter has a developmental disability many parents are devastated. They immediately realize that the life they had imagined for their child is now gone. They know they are going to experience a different journey than the one they had hoped for. This sometimes leads to disappointment, frustration, anger and resentment. As they consider the future they can feel overwhelmed and despondent.

In the beginning, some parents refuse to accept the diagnosis. They go into a form of denial, choosing not to believe what they’ve been told about their child. They desperately want the medical professionals to be wrong. They cannot understand how this could happen to their family. They try to convince themselves that all of the testing is incorrect, but eventually it becomes obvious that there is a significant issue that must be acknowledged.

In some instances, such as with Down syndrome or when an individual also has cerebral palsy, there can be physical characteristics that go with the intellectual challenge. However, in many cases children with developmental disabilities physically appear no different than anyone else. This can make it even more difficult to believe the diagnosis.

Obviously it takes time to adjust to any kind of life altering news, but when it affects your child it can be even harder to accept. Every mother and father on earth wants their son or daughter to be happy and healthy. They want them to have the opportunity in life to reach their full potential. They want them to avoid as many medical issues as possible, and they want them to be respected by others. The anxiety that can descend on a parent when they realize that their child is going to face the very challenges they had hoped to spare them from can be crushing.

In certain situations parents begin to suspect there are issues for their child even before any medical testing is actually performed. Significant developmental delays can make parents feel concerned about the lack of progress their child is showing in comparison to the advancements that other children are making. Delays in such milestones as mobility and speech are often key indicators that there is an intellectual issue that cannot be ignored or explained away.

But even though parents might suspect or even fear that their son or daughter has a disability, actually hearing the news from a health professional can still be devastating. It is human nature to hope against hope that there is some other explanation for why a child is not progressing, but getting the actual diagnosis of an intellectual challenge removes any doubt. It is a startling reality that hits a parent with an emotional impact that is difficult to absorb.

There is an almost unavoidable sense of loss that comes with such a diagnosis. The child they thought they would raise is not the person that will be growing up with their help. The realization that they now have a lifetime responsibility to care for someone who can be vulnerable and possibly medically fragile is daunting to some. They are consumed with all kinds of questions that can sometimes prove elusive to answer.

It is often the case that parents have little or no experience with any type of intellectual challenge. They have never been around individuals with developmental disabilities or families who have a loved one with that particular diagnosis. There is a steep learning curve that must be overcome so that they know how to assist their child in the best possible way. They are forced to learn through trial and error, and that can be frustrating and discouraging. In some circumstances they feel alone. They can feel disconnected from couples with children the same age.

When parents are given the diagnosis of an intellectual challenge, friends and acquaintances sometimes do not know how to react. They may want to express sorrow at the diagnosis or say they understand how you are feeling when in fact they have no idea what it like to receive such news. Sometimes they choose to say nothing at all, and their silence increases the feelings of isolation.

When a child is diagnosed it affects the entire family. If there are other children they can begin to feel left out or neglected if their sibling’s disability, out of necessity, demands extra time and attention. Parents certainly want to be fair and treat all of their children the same way, but it is not always possible.

It is also important to understand that the diagnosis of an intellectual challenge is by no means confined to birth or early childhood. At any point in a child’s life it can be determined that they have diminished cognitive function. This can result from a traumatic brain injury, a stroke, brain tumor or the onset of various other diseases. A child can be born completely healthy but have some type of medical complication as they are growing up that restricts blood flow to the brain and significant damage can occur. It is a fact of life that we all must live with.

The effects resulting from a diagnosis of a developmental disability are lifelong for everyone involved. Tremendous progress for the individual can be made. Their quality of life can be outstanding. Their achievements and accomplishments can be meaningful and inspiring - but the disability is permanent. It does not go away. And that is a sobering truth that is difficult for parents to accept when they are first given the news that their son or daughter has an intellectual challenge.

The prospect of having a child who will always be, at some level, dependent on you is a responsibility without end. It is a fact that changes not only the present but also the future. Decisions will continually need to be made that reflect what is best for the individual with the disability no matter how it affects the personal lives of their parents and siblings.

But despite all of the fear and uncertainty, the natural parental bond is intensely powerful. Understanding and acceptance soon overtake sadness and regret. At that point a mother and father completely embrace the child they are blessed with instead of missing the one they expected to have. They realize that their son or daughter is a complete human being like any other, who will have the same hopes, dreams and aspirations as other people. They know in their hearts that their child has the same rights as anyone else, and each mother and father gathers their strength and courage to begin the lifelong journey they will share as a family.

The parent child relationship cannot be altered by a disability. Our children are part of us because we created them, and that is the strongest connection human beings can have. The unconditional love that a parent has for their child is far stronger than any challenges their son or daughter might have, and it overcomes all the issues associated with a diagnosis.

It is often the case that families who have a child with a developmental disability are stronger, more resilient and more caring. They grow closer together because they appreciate each other, and they do not take things for granted. They learn to live one day at a time and to enjoy it to the fullest. They realize that the most important moments can happen when they are least expected. They make as many memories as they can as they attempt to create a future for their child that is based on dignity and respect. They are guardians and advocates fighting tirelessly for their son or daughter to be accepted as an equal.

Most importantly, parents understand that a diagnosis is a way of determining the meaning of symptoms and behaviors.

It does not determine the value of their child’s life.