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 John Nadworny, CFP, CTFA | Cynthia Haddad, CFP | 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

 

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 

 

 

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

TONITE! Adult Sibs- Join us for Trivia & Wine/Beer Tasting

Posted by Patty Manko on Tue, Apr 12, 2016 @ 08:08 AM

 

Please RSVP to MSSN at 617-807-0558 or info@masiblingsupport.org.

Sibling_Event_Flyer_Finalv2-page-001.jpg

Tags: siblings

Trivia, Wine & Beer Tasting for Adult Sibs, Tuesday, April 12

Posted by Patty Manko on Sat, Apr 09, 2016 @ 08:00 AM

 

Please RSVP to MSSN at 617-807-0558 or info@masiblingsupport.org.

Sibling_Event_Flyer_Finalv2-page-001.jpg

Tags: siblings

Bringing Family Members into Your Financial Discussions

Posted by Patty Manko on Mon, Aug 03, 2015 @ 03:11 PM

Screen_Shot_2015-08-03_at_2.47.56_PM
There are many ways to discuss your vision and your finances. It is often easiest to begin this process in a gradual manner and in an informal environment. Although it is important to have all family members in agreement, scheduling initial discussions in a formal meeting or large family setting is not always the best. We recommend speaking to one child at a time, to get their feelings about their willingness to help. This will give them the opportunity to share ideas with you rather than you telling them what you hope will happen. Remember, caring for a family member with disabilities is a lifetime commitment that you do not want to force on anyone, yet it is important for them to know your intentions.
After everyone has had an opportunity to discuss their feelings and ideas in an informal way, you may wish to plan a discussion with everyone at once.
Since every family’s dynamics are unique, you will find the best way to communicate with your family.
The following steps should help to move the communication process along smoothly:
  • Share your vision
  • Talk about the amount of money you plan to have available to support your vision. You do not have to reveal all of your financial matters. You can choose to only mention the financial aspects that pertain to the needs of the family member with a disability.
  • Determine the best person to take on each role. For example, who is the best with finances? That person may be a good trustee or trust advisor of a Special Needs Trust. Who is most involved in the day to day life of the child? That person may be a good guardian.
  • Ask family members if they feel able to perform their roles independently. If not,design your plan to give them resources to work with. For example, let them know that they could hire an investment advisor to help with the trust management or a social worker to help oversee supports.

In our combined 30-plus years of planning, one of the biggest obstacles that we have encountered is that people do not feel comfortable talking about how much money they have. Even professionals in the field of providing services to families, including government agency employees that serve families, do not feel comfortable talking about money or the specific costs of providing services to individuals with disabilities. 

SNP STORY:

Although Charles is receiving all the benefits that he is eligible for and living independently, we feel that it is not enough for him to simply have what the government provides. We supplement his expenses by about $1,000 a month. This gives him the sense of self-worth and control to be able to do what he likes rather than do what someone else wants him to do. He has schizophrenia and his sense of self-worth is most important to his ability to function in life. In working with our financial planner and our attorney, we made arrangements for our other son to provide this supplement to support Charles’ needs without jeopardizing his government benefits when we are no longer able to. 

-- Charles’ father

Sometimes parents feel that they must treat all of their children equally. They feel that their children expect it. However, in many cases children without disabilities are more than willing to forego any type of inheritance to guarantee security for their brother or sister with  a disability. They understand the financial realities and would rather make sure their brother or sister is taken care of and would not expect that everything is shared equally.

One of the first steps that is required for you to be able to achieve financial security for your child is to overcome the reluctance to discuss the issues of money. We all know it takes money to provide services, staff, housing expenses, employment supports, transportation, education, health care services and the like. We also know that the government does not have an endless supply of money to funed these services.

For more information, attend our complimentary webinar presented by the Arc by clicking here or contact our office.

Tags: siblings

For National Siblings Day: Our SibTips

Posted by Patty Manko on Fri, Apr 10, 2015 @ 02:53 PM

April 10 is National Siblings Day.  

To all the brothers and sisters out there:

James_,_alex,_roxy_copy_2WE are both sisters of brothers with special needs. As we each step into the role of caretaker for our brother, there is a whole new world of terms and acronyms we need to learn. We call it the alphabet soup of special needs planning.
 
WE would like to share a glossary of terms we have learned over the past many years of providing Special Needs Financial Planning to families. As siblings, we have gathered some helpful tips to share and have included them as a SibTip with their respective term. have also included a directory of terms classified by our Five Factors of Special Needs Planning. 
 
Haddad Family.jpg copy 2 resized 600We hope you find this useful and we encourage you to share your tips and suggestions to make it an even better resource.  If it gets too overwhelming, know that we are here to help. 
 
Feel free to contact us at 781-756-1804 , on our website or via
Special Needs Planning on Facebook.
 
Enjoy the journey!!
 
Cynthia R. Haddad, CFP®, Ron's Sister
Alexandria M. Nadworny, James' Sister   
Download  our  Sib Tips
 

Tags: siblings

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

Subscribe via E-mail

Follow Me

Special Needs Financial Planning
Our Most Recent

Special Needs Financial Planning
Topics We Follow