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 pies_pexels-photo-1634062

 

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

Caring for Caregivers

Posted by Patty Manko on Thu, Jul 31, 2014 @ 12:59 PM

Screen Shot 2014 07 31 at 1.36.26 PM resized 600All parents endure stress, but studies show that parents of children with developmental disabilities, like autism, experience depression and anxiety far more often. Struggling to obtain crucial support services, the financial strain of paying for various therapies, the relentless worry over everything from wandering to the future — all of it can be overwhelming.1

The results of a new study showing the positive impact of intervention programs run by mothers of children with disabilities for mothers of children with disabilities was published in Pediatrics this week.  Participants experienced improvements in mental health, sleep and overall life satisfaction and showed less dysfunctional parent-child interactions.

Taking care of this parent population is a critically important issue. As the lead author of the study, Elisabeth Dykens, Ph.D., points out, " with the high prevalence of developmental disabilities – about one in five children – and the fact that most adult children with intellectual disabilities remain at home with aging parents, we have a looming public health problem on our hands.” 2

One of the key differentiators of this experiment was that it was targeted to adults, not their children, and it was not focused on sharpening parenting skills. Instead, parents learned ways to tackle their distress as problems arise. The idea is to stop wasting energy resisting the way life is.1

 

1 http://www.nytimes.com/2014/07/29/health/when-the-caregivers-need-healing.html?src=me 

2- http://news.vanderbilt.edu/2014/07/mothers-of-children-with-autism-benefit-from-stress-reduction-intervention-study/ 

Tags: siblings, parents of people with disabilities

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