A Talk with My Parents Around Our Holiday Table

Posted by Alex Nadworny on Fri, Dec 14, 2018 @ 06:30 AM

A Talk with My Parents Around Our Holiday Table

A Sibling's Story: Thanksgiving, 2012

by Alex Nadworny

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It was the first Thanksgiving in a long time where it was just the five of us: Ben, me, Dad, Mom and James, around the table. We gave thanks for all we had and the feasting began.  We ate and talked and laughed until we were as stuffed as Thanksgiving turkeys ourselves. We settled into post-dinner conversation and everyone was relaxed and in a great mood, when I heard myself say to my parents, “Where will James live when you are gone?”

Ben & jamesImmediately Ben replied, “He’s living with me.”

To which I said, “No, with me.”

To which my Dad said, “No way he’s living with either of you!”

This question had been on my mind. I loved James and would do anything for him, but I didn’t know exactly what being his caregiver would entail and how it would impact my life.  I have never been concerned about the planning for my brother; this was a given as my Dad is a professional financial planner and my Mom is an advocate and support group leader. But no one had ever asked me what I wanted for James.

 I knew my parents were handling things from a big picture perspective, like building a home for James, but I wanted to know more about what was involved with supporting his day-to-day life.  My Mom kept a detailed schedule of James’ activities but there was something missing: the many things James required, big and small, that she and my Dad did every day.

Alex & james_cropped Our family always talked about everything and I felt comfortable asking my parents anything; there were never any communication barriers. In this case, it was harder for my parents to hear this question than it was for me to ask it.  While they had a plan all mapped out in their minds, they had avoided talking with Ben and me about our future roles in James’ life. Like many parents, they assumed that caring for James would place a burden upon us and they were not ready to have that conversation. I felt differently; I wanted to know what the plan was and to be empowered to shape my role in James’ life.

 In many families, adult children who have a sibling with special needs have their own lives and for varying reasons, really don’t want to be involved in a hands-on manner; they may live a distance away, have family obligations of their own and/or a demanding career. Still, talking about the who, what, and where of the future support plans for their sibling is an essential conversation to have. A sibling’s expectation does not need to be that they will be a caregiver or have to change their life.  It is a wonderful role to be just a brother or sister. 

 The truth is that while every family is different, this conversation always needs to happen. This holiday season, if the atmosphere is right, and you know what you want to say, respectfully start talking! 

Download our Holiday Tips for Family Talks here 

 

 

Tags: families with special needs, siblings, guardianship, planning for a future after parents are gone, parents of people with disabilities

A Special Mother's Day Message

Posted by Patty Manko on Thu, May 08, 2014 @ 04:22 PM

Ben, James, Susan, Alex,NadwornyA 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

 

Tags: families with special needs

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