Alex Nadworny

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The Conversation Around Our Holiday Table Continues

Posted by Alex Nadworny on Wed, Nov 24, 2021 @ 07:00 AM

An Update ...the conversation continues.

By Alexandria Dunn

A few years ago, I shared the story of my family’s 2012 conversation around our Thanksgiving table (see below). Now, almost 10 years after the discussion of who would care for James as my parents age and can no longer do all they do began, I have a few additional observations and tips to share.

Since that time, the discussions around James and his future have flowed naturally and the plans related to it have evolved. Communication is more important than ever in working together to provide the best life for James. It is KEY for parents to talk about the future with their children and other family members to  give them an idea of what they are thinking and importantly, including them in building relationships with all of the people who are important in their child's life. 

 

Tim, Alex, James Bday_20212021-

While I will always be Alex Nadworny, this will be my first Thanksgiving as Alex Dunn. My husband Tim and I plan to celebrate with each of our families; mine earlier in the day and Tim’s later in the afternoon.

Everyone who knows my family knows the close relationship my brother Ben and I each have with James. It has been wonderful for me, my family and my friends to see the easy and loving relationship Tim, or “T” as James calls him, has with James. When James sees me now, he is also looking for T and when he is around Ben, he expects to see his fiancee, Madison. 

Nadwornys and Dunns_2021As an added bonus, our families get along very well. Tim is from a large family and when we all get together, they are so accepting and comfortable with James he is just one of the gang. 

Covid brought changes for James that impacted our entire family. Like many adults, James attended a community-based day program that was suspended due to Covid and like many other families, we have found it nearly impossible to hire qualified people to help us care for James. Many parents have been sidelined by the lack of quality child care and this is often stated as a major contributor to the “Big Quit” or “Great Tim, Alex, James_2021Resignation” that is impacting the U.S. labor market. My Mom, Susan, has always been James' primary caregiver but now her job became 24/7 with only our family providing spotty respite help. I began getting much more involved in planning for James, working with my Mom and trying to help by attending DDS meetings and getting to know the folks at the agencies who play an important part in James' life. 

 This Thanksgiving I am grateful we are able to gather in good health, reflect on all of the changes in our lives and carry on the conversation.The holidays have a way of bringing the future into focus in a very real way; if the atmosphere is right, and you know what you want to say, respectfully start talking! Here are some tips to begin the conversation. 

Download our Holiday Tips for Family Talks

Read the predecessor story, A Sibling's Story: Thanksgiving, 2012

 

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

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

thanksgiving table_pexels-askar-abayev-5638642

 

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

 

Other related resources: 

A Parent's Guide to the Special Needs Letter of Intent

 

 

 

The opinions voiced in this material are for general information only and are not intended to provide specific advice or recommendations for any specific individuals. 

 

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