A mother’s role is awesome and all consuming. When her children are young, the love and care they require is sometimes overwhelming. She is their everything: feeding, dressing, bathing and wiping away tears becomes a way of life for the first few years. As they get older, she shuttles them from activity to activity, listening, and encouraging them to grow their independence. Then they are adults: she can see them navigating the world and pursuing their dreams.
I am a mother of three: a son and a daughter with typical development and my youngest, a son with Down syndrome. There are no words to describe a mother’s role in the life of her child with special needs. We do all of the things we did with our typical children but that only gets us so far. We don’t ever stop dressing, feeding, bathing, listening and encouraging them. Our role encompasses so much more: we need to be there forever to be the voice of our child. We not only have to teach our children we have to teach the world. We have to learn the lingo: the language of doctors and educators, the state and federal laws, the budgets and the agencies. We have to learn systems of care and navigate insurance coverage. We have to thicken our skin and grow our contacts to make sure we have access to the person or mind or law that needs to be changed.
We also have the worry of who might take on our role as we age. We know that we cannot possibly keep this pace up and that eventually we will have to relinquish our role, no matter if we are ready or not. We have nurtured this child to adulthood and they have become our second skin – we know them better than we know ourselves. Who can we count on to take this on? I've come to appreciate that while no one can replace a mother, a team of family, friends and professionals can continue to care for my child. Planning for this "team to carry on" is my next role as the mother of a man with lifelong support needs.
~ Susan Nadworny