An Unexpected Caregiver Brings Joy to All

Posted by Haddad Nadworny on Fri, Sep 03, 2021 @ 08:30 AM

The Special Needs Financial Planning Team John Nadworny, CFP, CTFA | Cynthia Haddad, CFP, ChSNC | Alexandria  Nadworny, CFP, CTFA

Our educational outreach continues via webinar throughout the time of the  pandemic. Please contact Alex Nadworny via email -  anadworny@affiniafg.com - to discuss an online presentation to your group.

Please enjoy this story about how the success of an unlikely caregiver made for an amazing summer experience for everyone involved. There are Planning Pointers at the end of the story to help parents on their own journey. 

Susan, James' Mom

John and SusanWhen an invitation arrived from one of our very favorite people, our Polish exchange student Karolina, my husband John and I wanted to figure out how we could travel to Warsaw to celebrate her nuptials with her.  Planning a getaway and care for our son James, no matter the length of time, is always a logistical challenge and a complicated process in our house. The addition of Covid and no day program (with none in sight) for James made a difficult situation even harder. 

Thinking creatively was key. Our son, Ben, and daughter, Alex, wouldn’t be available as they both work full time, so we needed care during the day. My mind immediately jumped to John’s brother, Ed.

John was at first reluctant to consider Ed , as he viewed asking Ed to care for James as an imposition and didn’t want to make him feel uncomfortable. James is an adult, and mostly nonverbal, and his care requires three square meals, medication, patience with the boundary testing he would most likely provoke and assistance/cueing with his hygiene and bedtime routine. Ed is retired and had spent six weeks with us the previous summer, which we all enjoyed. He checked the important boxes of having time and he loving his nephew. Although Ed has plenty of talents, we weren’t sure if caring for someone else was one of them. Previously, this was not part of Ed’s perceived repertoire of skills - or so he thought.

Given our limited – make that non-existent – alternatives, she figured no harm, no foul and picked up the phone to call him.  

Ed, James' Uncle

Ed and James at the beachI actually thought Susan was joking when she asked me if I would watch James. I hadn’t cared for anyone for more than an afternoon in over 25 years!  At first, I didn’t respond to her request. However, the thought of spending time with James became less daunting the more I thought about it, to the point where I told John I’d do it. From previous encounters, I already knew that James is a hoot! We’d have a good time while John and Susan went overseas for a brief vacation.

I went to their home in Gloucester a few days before they were planning to leave for some “basic training.” Preparing the meals, remembering his meds and sticking to his schedule were easy since I like to cook and James always enjoys everything on his plate. The nighttime routine of showering, shaving and tooth brushing was a different story. This is my brother’s “alone time” with James. John's practice was to drive the process while James went along for the ride. After getting Susan’s nod of approval, I decided to do a few things differently by making James take a more active role. I thought, "Let the fun begin!"

The first night was rough, a battle of wits! James is really intuitive. He can read a situation very well and apparently saw me as a push over. Normally James is told to “wrap it up” and he marches upstairs without delay. With me, that alone took us 15 minutes. We argued about the temperature of the shower for another 10 minutes. I expected him to wash himself completely. That took some serious encouragement but…he did it. I shaved him and he brushed his teeth. Day 1 took about an hour.

Day 2 was a breeze. It became more of a game with him. I said yes, he said no and we both laughed (a lot!) before he complied. In fact, he got pretty good at brushing his top teeth. That was huge! The nights that followed went great. We created our own routines as our relationship blossomed. We spent time at the beach jousting back and forth over things like him wearing his hat and drinking bottle after bottle of water. He laughed at me as I sang to his music of choice for 2021, 70s Rock. I laughed at him as he participated in virtual Dance Parties. He helped me yell at Roxy (their chihuahua). We bonded as we pushed each other, and grew.

I appreciate youLast year, the weeks I spent in Massachusetts with James, John and Susan were a lot of fun. This year, the 4 weeks I spent with them were also fun but the time I spent with James this summer was unforgettable. He is an amazing individual, full of happiness and love. I understand he enjoys his routines, but I also believe he liked to change things up a bit as well. I’ll be trying to convince John and Susan to go away again next year.

Our takeaway:

There is joy in asking, and joy in saying yes. We each gained a greater understanding of and love for each other with this experience.  We celebrate John and Susan’s ability to travel, James' independence and yes, Ed can add caring to his long list of skills. We all won and it started with an ask.

Planning Pointers:

Family and Support are one of the Five Factors of Special Needs Planning  for an individual. Along with this story, you may find it helpful to keep these tips in mind when considering caregiving for your child.

  1. Always keep an open mind when thinking about possible support people.
  2. Create opportunities for people to get to know your child.
  3. The formal check list of criteria required of a caregiver may be secondary to a person having a relationship with your child.
  4. Both a parent and potential caregiver should be willing to take some measured risks.
  5. Don’t shy away from talking with and asking a person to be a potential caregiver for your child; you will never get to “yes” unless you ask!

Related resource:

LOI-2

 

 

Tags: supports for special needs, parents of people with disabilities, caregivers for special needs, families with special needs

Whoa! My Child Isn't the Only One Getting Older!!

Posted by Haddad Nadworny on Sat, Apr 20, 2019 @ 07:00 AM

The Special Needs Financial Planning Team at Affinia Financial Group John Nadworny, CFP, CTFA | Cynthia Haddad, CFP, ChSNC | Alexandria Nadworny,  CFP, CTFA

Visit our NEW Interactive Workshops Calendar

This blog kicks off a series illustrating a step-by-step approach to planning for the care of your adult child with special needs. 

Considerable We have just been quoted extensively in Planning for your adult child’s care, when she’ll never be able to care for herselfpublished in Considerable, an online magazine. 

 

Part I - Meet Sarah

The moment the door closed for our meeting, our client Sarah, whom we’ve worked with for many years, said “We need to talk about what happened to me over the holidays. “ 

 The Wake up Call

bloom-blossom-feet-2120087She had simply been coming down the stairs of her home when she slipped on a tread and landed awkwardly, breaking a few of the bones in her right foot. Recovery from a broken foot is not a quick fix; the first week of complete immobility and pain had been followed by a few weeks on crutches, then a walking cast and then finally, she was able to walk unassisted, resume her daily activities and very importantly, wear her shoes!

The broken foot had healed but Sarah’s life had been upended in a way that she had not anticipated.  The accident had opened a window on the future, and given her a view of what life might be like as she grew older; a time when she might not be as strong or nimble as she is now. 

Sarah is taking this wake-up call very seriously, driven primarily by concern over the future care of her adult son, Thomas.  Thomas lives with her and has developmental disabilities.  He participates in a day program but right now, his other activities are limited and they spend almost all of their time together.

 

Working on a Plan 

Sarah had 3 questions she wanted to discuss and plan for:  

  • Where will Thomas live?
  • What supports will he need?
  • What resources do I need to make this happen?

While Sarah and Thomas have their own individual lives and circumstances, Sarah’s concerns are far from unique.  Many of the parents we work with have given voice to these same worries.

When we first meet someone, we usually begin with some basic questions.  We backed things up a bit and asked,

  • Who was your first call when you fell?
  • Does that person know Thomas” routine?
  • Does the agency running Thomas’ program have the authority to speak to this person?

We have learned that it is important to be sensitive to all considerations, particularly emotional factors, and how they may influence the motivation a parent has in planning.  It is very easy to feel overwhelmed and become frozen into inaction. We walk with them, step by step, to keep the discussion focused and moving forward.

Related resources: 

LOI Parents Guide

 

SNT Guide PDF

 

Part II - Figuring Out the Next Steps  

adult-beach-drawing-698899

 

Tags: parents of people with disabilities, caregivers for special needs, special needs Letter of Intent, Aging Caregiver

The Power of Love: Happy 60th Ron!

Posted by Cynthia Haddad on Thu, Feb 14, 2019 @ 06:00 AM

The Special Needs Financial Planning Team at Affinia Financial Group John Nadworny, CFP, CTFA | Cynthia Haddad, CFP, ChSNC | Alexandria Nadworny,  CFP, CTFA

We are committed to presenting complimentary educational workshops to  organizations and parent groups. We are currently booking presentations for the Spring 2019 season. Please click here to email Alex Nadworny or call 781-756-1804 . 

 

The Power of Love: Happy 60th Ron!

By Cynthia Haddad

Happy 60th RonFor my brother Ron, it has always been about his birthday. Every summer of my adult life, the phone calls would begin with “Are you getting ready for my birthday?”. It would be Ron calling, giddy with excitement, wanting to talk about the plans for his upcoming birthday. The thing is, his birthday is on January 6th.

After telling him how excited I am about plans for his birthday, I remind him that it is my birthday coming up next in August, and then my children in November and then our brother Steve’s is in December, and THEN it will be his birthday, 6 days after the New Year.

Ron has always been, and will always be, “the special one” in our family. This past January was his 60th birthday and we had a big party to celebrate this milestone. It was a surprise party and Ron had a great, great time – especially after he recovered from the shock of it all!

Ron&parentsBeing with him on his 60th birthday, immersed in the warmth of family and friends and seeing the extraordinary love my parents have for Ron, I am overwhelmed with gratitude.

While they are getting up there in age, their joy and focus on Ron, even after celebrating 60 birthdays together, is so fresh and true; Ron will never grow old in their eyes.  

 

Looking Back…

Celebrating Ron’s 60th was also a time for me to reflect back on my parent’s love and devotion to Ron since we were young; a time when there were no entitlements for children with disabilities. 

After being told her son was “not educable”, my Mom, as one from a generation of pioneering parents, advocated for her son’s education even though there was no basis for her to do so. She was empowered because she believed in Ron and she knew what he had inside of him.

In 1972, Massachusetts passed landmark legislation, known as Chapter 766, guaranteeing all children the right to a free and appropriate public education. Without this law, coupled with my mother’s advocacy efforts, Ron would have never achieved so much, including:

  • Being one of the first people with special needs to graduate from Minute Man Tech.
  • Representing Massachusetts in the International Special Olympics.
  • Having been gainfully employed after high school throughout his life.
  • Living outside the family home, and so much more.

Ron is now a viable part of our society; he works, has friends, goes on trips, lives in an apartment with supports, and is a fully participating member of our family.

Today…

We cannot even imagine what it was like for parents of children Ron’s age and older with special needs.  At that time, the state’s view was that children with disabilities should be kept in an institution.  Parents were told their child would most likely never work or be a part of the community, and other negative stories of a very difficult life ahead. My mother knew parents who literally had their daughter living in a closet in order to protect her from being removed from their family and sent to an institution. 

We’ve come a long way. Thanks to the pioneering parents and to the countless parents and advocates who still passionately fight for children to receive needed supports and believe they should be allowed an opportunity to live a full and a meaningful life in the community.

Tomorrow…

Ron & cindy

My parents are my heroes. The power of their love for Ron is beyond what I can describe; they have put everything aside to care for and champion him his entire life. As devoted as I am to Ron, I must admit that I do not have the same degree of love for him that my parents do. He is my brother and I am not expected to; I have my husband and children to focus on. 

How do I care for him through the ups, downs and every days without losing myself in the middle?  How do I honor my parents and pass that intense love forward from generation to generation?

 I have found my answer in knowing my limits, what my capacity is and when I need to ask for help from my brothers, my cousins, my friends, my colleagues, and professionals. I know we can never replace our parents’ love but we can surround Ron with a network of family, friends, staff and community who care.

Ron is not just “the special one”, he is the very much loved one by many!

 Now…

I just came from seeing my brother, Ron, and he is very excited… about turning 61 next January!

A very Happy Valentine’s Day to my loving family!
To my parents, my husband and children, and all three of my brothers…
I thank you for the power of your love.

the Sibs

Related resource:

LOI Parents Guide

 

Tags: parents of people with disabilities, siblings

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 

Related Resources: 

LOI Parents Guide

 

SNT Guide PDF

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

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: parents of people with disabilities, siblings