“I had no idea.” It’s the most frequent comment that I have received about Special Needs from individuals who do not have a child with a developmental disability. I heard it over and over, said with wonder and seemingly genuine regret that they had not known the extent to which raising a child with special needs affects every aspect of a family’s life.
But, that’s not surprising. Raising a child like my daughter is an isolating experience. The difficulties are not something other people often want to hear. There’s not a lot to brag about or accomplishments to share on Facebook or Instagram. There’s not a lot that other people can understand if they’re not living it. But how will they ever understand unless we do share our experience, our hopes, our fears, our needs? It’s not easy to lay bare your soul, reveal the soft underbelly of your difficult journey parenting a child who doesn’t fit the norm. Yet it is so necessary for us to share if society is to understand our children’s needs and support our families’ quest in fulfilling them.
So I will continue to write about my journey and share my story about caring for my lovely Lauren as we journey beyond the pages of Special Needs. Our experience is by no means universal of all families raising children with special needs, and since my experience is specifically with raising a child with severe developmental disabilities that is what I write about. By severe, I’m referring to individuals who need assistance with all aspects of their daily life including personal care, eating, and decision making. They often have mobility issues, cannot direct their own care to any great degree, may have serious behavior issues, and frequently have significant communication and/or health issues. They represent a particularly dependent and vulnerable segment of the developmentally disabled population with particularly difficult, extensive, and diverse needs to meet. They and their families have stories that need to be told and hurdles they need others to understand. Within these posts, I hope to pull back the curtain obscuring the reality of their lives and perhaps help others to begin to comprehend our journey. Thank you for joining me here in this blog, and please help inform and enlighten the people you know by encouraging them to join us here as well.
is the author of Special Needs: A Daughter's Disability, A Mother's Mission. Gail is an accomplished advocate and writer in the field of developmental disabilities and Mom to Lauren, a young woman endeavoring to lead her best life despite severe challenges.