Having a child can be the most rewarding yet scary experience for anyone. Doubt and uncertainty are common feelings that emerge. The idea of being responsible for another life is overwhelming to say the least. Some ask the question, “can I do it?”

Contrary to what many may believe, there is no book or manual written to prepare for the true journey of parenthood. This is even more true for parents of children with intellectual and developmental disabilities. The best advice I can give a parent of a child with a disability about what to expect is: expect the unexpected!

While many new parents seek guidance from other family members, families of children with disabilities often find themselves alone, with little or no support.

Raising a child with an intellectual or developmental disability can be both taxing and exhausting for families. Parents are often given a diagnosis for their child without any education on how to best support them. They are left with an empty toolbox. I find myself asking the question, “where else does this happen?” In today’s world there is support for almost any other area of our lives.

I recently purchased a new Samsung Galaxy Android phone. The idea of learning how to use a new phone was overwhelming, but with the phone there was not only a manual with instructions on how to use it, but an active link for online support, and a toll free number to call if I had any additional questions. Once again I found myself asking, “where is the support for families with disabilities?”

The work of a family with a child with a disability is a full time job. There are many appointments to schedule and keep, and numerous interactions with complete strangers who are in your life, not because you want them to be, but because you need them to be.

Finding and funding the needed support services can easily overwhelm families. Family members must also cope with the daily stress of seeing their child struggle. Although most parents are considered as “the experts” where their own children are concerned, without being provided with the necessary tools or strategies to work with their loved one, it can be challenging.

Families are a child’s first educator. They provide emotional, spiritual, physical, and educational support, and continue to actively influence the learning and development of their loved one throughout the course of their lives. This is why it is important for professionals and families to work together in partnership. Helen Keller said, “Alone we can do so little; together we can do so much.”

By working together and sharing information, both parents and professionals enhance the quality of life of the person with the disability. True quality involves active participation from all stakeholders-- the person with the disability, his or her family, and professionals.

Professionals play a significant role in the lives of families. Not only are they often the only hope for families, but in many cases the last source of hope. They can serve as advocates for both people with disabilities and their families. Understanding the concerns and perspectives of parents is essential to working with them effectively as partners in the lives of their loved one.

Professionals receive training and have developed specific strategies and methods to teach and help people with disabilities cope. Unfortunately, these skills are not often taught to families. 

We have come a long way in the intellectual and/or developmental disabilities (I/DD) field with putting the person with the disability in the driver's seat and allowing them to direct the course of their own lives. There is still more work to be done in including families. They should be in that car with their loved one and play an active role in supporting the person to reach their goals.

YAI recognizes the importance of partnering with families and providing them with the support and tools to work with their loved one. For more information or resources, please reach out to YAI LINK. You’re not in this alone! 212.273.6182 or email us at link@yai.org.