FAMILIES

For most people, there is nothing more important in life than family. The benefits of the parent-child relationship and the interactions with siblings cannot be stressed enough.

Family provides the nurturing support that every person needs, but it is particularly crucial for children with developmental disabilities. The love they receive from their family permits them to be themselves. They receive encouragement, understanding and most of all complete acceptance.

In most cases, these families did not anticipate having a loved one with a disability. The condition was diagnosed at birth or when the child was very young. However, some found out through prenatal testing that their baby would be born with an intellectual challenge, and they made the courageous decision to continue the pregnancy. No matter how it occurred, they had to be willing to adjust their expectations. They had to find the strength to accept a different reality from the one they had envisioned.

Because they were able to adapt and embrace a life they had not asked for, they learned to accept what was necessary without compromising their hope for the future. They struggled to believe in themselves even as they were constantly learning everything they could about the particular issues that their loved one was facing. They discovered that they could be stronger than they ever imagined, and they developed the ability to face disappointments and setbacks without ever giving up.

These families overcame countless challenges while tenaciously doing everything in their power to provide their son or daughter with the opportunity in life to reach their full potential. They worked diligently, making personal sacrifices, to ensure that the intellectual, physical and emotional needs of their loved ones were met.

However, when a problem did arise, their experience and knowledge of their child’s needs often provided the solution to whatever the issue happened to be. They were committed to protecting the health and welfare of their sons and daughters above all else, and they were relentless in their efforts to live up to that responsibility.

We all know that being a parent is a difficult job that requires complete involvement while maintaining the ability to be both flexible and firm. But when intellectual and physical challenges are added to the mix, coupled with life-altering medical issues, it can become overwhelming. 

Many of these families have lived through multiple illnesses and emergencies with their child, and in some cases, they have faced life or death situations. They have experienced the raw visceral fear of losing their child, and they have come through that experience with a profound sense of just how fragile life can be.

They know how important it is to appreciate every day you have with those you love. They understand how powerful the small quiet moments can be, and they realize that, at some point, they will become treasured memories. These parents have the wisdom to fully enjoy the time they share with their child.

Because these families include an individual with a developmental disability, they have a different perspective on life. They have overcome difficulties that most of us have never experienced. They have faced seemingly endless tests that others did not have to endure.

They have been subjected to more stress, more worry, more fear, and more frustration. There has, at times, been great discouragement, and they have been concerned whether or not they could handle everything that life was throwing at them. Sometimes these families felt isolated. They felt disconnected from those who were not experiencing the same issues. There were periods when they wondered if they could face another day.

But even during the darkest of times, they had the courage to stand up to anyone who regarded their family member as a diagnosis instead of a person. They did everything within their power to ensure that their child could enjoy the most rewarding life possible. They were determined to see that they had the same opportunities as other children. They fought for their right to receive an education, to enjoy inclusion in the community, and to be treated with dignity. They became powerful advocates as they continually pushed for society to accept their loved ones as equals. 

That lifelong commitment, dedication, and unwavering support demonstrate the true meaning of what it means to be a family.

Looking back, they are thankful for the lives they’ve been able to share with their son, daughter, brother, or sister. There is no bitterness or regret over the roles they were thrust into. Instead, they continue to accept the day-to-day challenges of having a loved one with a developmental disability, and they persevere with humor, grace, and patience as they remain positive and hopeful about the future.

There is no doubt that the single most valuable thing a person with an intellectual challenge can have in life is the unconditional love of their family.

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