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Interview- Part 2 of 3– Navigating the Transition

This is the second part of a three-part interview series where Cynthia talks about her relationship with Ron, her brother, who receives support from the Cooperative for Human Services.

 How is your role different from that of your parents in terms of relating to Ron now that you have a lead role in parenting?

“My parents are still alive, but they are tired.  They don’t do as much as they used to, but they are still there for him.  They there as best as they can. What partnering with CHS allows me to do is live my life and not be Ron’s sole caregiver. It’s very important. So when you talk about siblings, we are not of the Sandwich Generation. We are of the Super Sandwich Generation!  We are caring up, we are caring down, and across. We have aging parents, we have children of our own – many of us do, and we have an adult sibling whose needs are changing.  So you talk about aging in place for your parents, talk about aging in place for your brother and talk about helping your kids. So we are the Super Sandwich Generation. It’s an awful lot to juggle. Someone that I work with said to me, “Oh my gosh, it’s almost like you have another kid. It’s almost like you have five kids – your parents, you’ve got your brother and your own kids. And, God bless my husband.”

“I am fortunate enough to have my other brothers, too. We each try to do things for Ron at different times.  I have worked with a professional life-coach and recognize that you have to reach out and also protect yourself. Self-care is so important.”

Let’s talk about self-care because it’s an important topic for everyone.  What are some things you do for self-care?

“One is boundaries; we have to be okay with boundaries.  Somebody told me a long time ago to tend to your own garden first, before you can tend to anybody else’s garden. And I think I set boundaries and take care of myself and carve out space for me, which is really hard to do – but, you have to – I feel better and I can be more patient and a better sibling. But I work professionally so it’s always about finding a balance.”

What were some of Ron’s key transitions that you were involved in or aware of, or perhaps facilitated?

“One was his moving out of the family home.  I think the biggest part was the transition from moving from the family home to where he is today.  And you know, being in the right place at the right time, I was on the Citizens Advisory Board for DDS at the time and I was part of the ARC Mass Movement for Family-to-Family, families that were on the waiting list for services and support. This is when  I learned that Ron would be eligible for funding from the Boule settlement from DDS.  So that’s how we were identified to receive some services for Ron.”

“Ron had wanted to move out for a very long time and it was getting very ugly or challenging, yeah challenging, with him being at home with my parents. He wanted to be like everybody else. I was the one that really advocated for him to move out and it just seemed like the right time.  Because I had been talking about it for years, and I had been advocating for him to live on his own, because I didn’t want to look up one day and have him living with me. I wanted to – I didn’t know that I could – but I wanted to be able to live my own life with Ron part of it, but not the focal point. So I needed to know that yes, it is ok that it’s about me, too. And, I could love him from afar just as much as I could love him attached to my hip. I didn’t know I had options until I spoke with other siblings and got involved with the disability community.”

How did you navigate through the system and find services?  Are there any tips that you would give other siblings who are attempting to go through this process now?

“Well, it was tough.  It was learning a whole new language. It was learning a whole new world and I took baby steps. I served on the Board of what was then called the Arlington Association for Retarded Children, now known as the Association for Special Needs Activities and Programs or A– SNAP.  I have dedicated my whole profession, my whole practice, my whole career, really, to helping other families like my own. So because of that, I made it a personal mission to educate myself and educate other folks, as well as other families, in planning for the future.  I wrote a book, The Special Needs Planning Guide: How To Prepare For Every Stage of Your Child’s Life along with John Nadworny.  I also wrote an e-book called, “Sib Tips: A Vocabulary for Brothers and Sisters, which is on my website.  It explains basics about what is DDS, SSI, SSDI, ISP? I mean, brothers and sisters don’t know any of this stuff. They may have heard of it. And then, all of a sudden the parents can’t take care and you have to step up and you have never been to an ISP meeting.”

“We encourage parents to bring adult siblings to the ISP meeting, fill out what we call a letter of intent, which is all of the information about the adult child.  What are their likes, what are their preferences, what are their habits, what’s their hygiene, who are the people in their life?  In the letter of intent, even share the vision you have for your son or daughter.  So the parents have passed this down to the siblings.  We need to do that for the next future caregivers, which might be our children, our nieces and nephews, or if there is no family, might be professionals, might be an agency.  Fill out, let them know who and what is important to your brother at Christmas or their birthday or holidays that are special and important to the family.”

It’s similar to “My Story,” a tool we use at CHS to understand the history, preferences, interests and needs of the people we serve.

“Right, it’s a person-centered plan like “My Story”.  Somebody needs to know the history to be able to carry it on.  What are the family values?   Who knows that stuff?  It’s usually the brothers and sisters, because we share the longest relationship on Earth.”

What do you do when you don’t necessarily agree with an aspiration that your brother might have or his preferences? 

“He can negotiate!  I mean there are a lot of things he’s wanted that I have stepped up for him and asked for him. Well, I think as I get older I can appreciate more that he has opinions and decisions and it’s not always about me. And if he was a typical sibling, what would I have to say about it?  He is capable of choices.  I’m not his guardian. I’m his advocate and that’s different.  Can I help him with his financial matters? Yes, that’s a power-of-attorney.  Can I help him with his healthcare decisions? Yes, that’s a healthcare proxy.  Can I help him advocate? Yes, I have legal documents in place, for that if we need them. Just like you and I should.”

“But knowing that he can make decisions; he’s not incompetent and he might not make the best decision. It might be frustrating to no end and yeah, there are frustrating tears and challenges. Yes, we have those.  And sometimes they just need to simmer and walk away – this will pass. He’ll change his focus soon enough or not.  So I can’t change his behavior but I can change how I respond to his behavior and that’s something I’ve learned.  That’s called self-preservation and I’m not that powerful where I can do everything and be everything for him or for anybody.”


Rewards and Challenges of Sibling Support

Over the next week, we will be posting a three-part interview series where Cynthia talks about her relationship with Ron, her brother, who receives support from the Cooperative for Human Services Inc.

Cynthia R. Haddad shares an insightful perspective on how she and her extended family provide support to her special needs sibling.  As a wealth advisor, Cindy is a committed professional partner to families planning lifelong care for their special needs family member. As a sister, Cindy is a dedicated sibling and effective advocate for her brother. Cindy is currently a member of the Board of Directors for the Massachusetts Sibling Support Network (MSSN). She has held leadership positions in a variety of public policy advisory organizations, served as Board Member of the Arc of Massachusetts, and the Central-Middlesex Area Advisory Board for Massachusetts Department of Developmental Services. Learn more about Cynthia at her website, www.specialneedsplanning.com.

Interview- Part 1 of 3– Finding Support Networks

Perhaps we could start by talking about how your parents approached the subject of being a sibling and taking care of your brother in the future. Was there a conversation like that?

“No, somethings you didn’t talk about, not directly like that.  I was the youngest of five, and I was the only girl. So we just always grew up knowing that my brother was the special one; he needed a little extra help and an extra hand and a little extra support.  But my family made him to be as independent as possible and they do a great job. He was one of the first to graduate from the Special Education program at Minuteman Technical High School, Lexington, under Massachusetts public law Chapter 766.  He was also one of the first members of a Boy Scout Troop for special needs and one of the first participants to represent Massachusetts in the International Special Olympics Games.”

“One of my other brothers was in that group too, so the troop had a combination of abilities.  My mom really helped to create a wonderful network of other parents. We had dances and fund raisers. We’d be at Stop & Shop asking to please donate to the retarded.  At that time we did use the “R” word. But we did not use the “R” word in our house. We just talked about Ron being special and he’s still to this day, special. It’s all about Ron… all about Ron.”

When you were growing up, how did you feel about the situation?  Some siblings might feel resentful because there is someone else getting attention.

“We weren’t resentful; we were just all one big family. You just had to all help each other; all cared for each other.  We went to Special Olympics and supported Ron, who was the first to go to International Special Olympics. And the people in Arlington where we grew up… we had some pioneering parents in our town.  Arlington had the first workshop, the Kelleher Center, and one of the first group homes was in Arlington. Because these pioneering parents were of a generation where you didn’t talk about the situation, you just did what needed to be done.”

“And again, I tell this story quite a bit, when I go and speak. I’m on the board of the Massachusetts Sibling Support Network.  I talk about future planning as a family affair. We talk about family statistics, and current research about sibling issues. So I am comfortable talking about it. But when I was younger, I was not comfortable talking about it.  I knew Ron was just Ron. Any kid with special needs just needed special attention. We donated our clothes to the Fernald School and we just thanked God that Ron was not there.” And so we did a whole bunch of stuff because Ron and his peers needed some extra help, so it was just a given.”

Are you and your siblings all equally involved in Ron’s life or do some live farther away?

“We are all around. We all have different roles. We all love him differently. But it wasn’t until my mid-twenties when I fully stepped up.  When I was in middle school, this was the first time kids with special needs were integrated into the classroom. I remember very well in seventh grade walking down the hall with my friends and some of Ronnie’s friends, who were younger than him, came down the hall waving to me with their funny faces and different looks and different voices and waved, “There is Ronnie’s sister!” We knew them from dances, fundraising and activities like Special Olympics that we all participated in.  I said hello to everybody and when I turned around, my friends all ran away. They were afraid of these odd types. But to me they were just Ron’s friends. We never spoke about what their special needs were exactly; we just knew he and his friends were special.”

‘In my mid-twenties I attended my first sibling support group through the Boston Greater ARC (now part of Northeast ARC).  For twelve weeks we went and learned about where Ron and his friends could live, work, and that you could create trusts where you could leave money to them without jeopardizing government benefits. We learned about genetic testing.  We learned so much in that group and that is when I really felt the connection with other brothers and sisters for the first time.”

How did you navigate and find helpful information? It seems through the Greater Boston ARC.

“Yes, through the ARC of Greater Boston, which is now Greater Boston ARC.”

Was networking and talking to other siblings in a similar situation important at the time or perhaps that came later?

“Well, in my mid-twenties it was just incredible, we sat around the table, we shared stories with the one common thread that our parents spoiled the heck out of our brothers and sisters.   And, if we were going to be the next generation to parent, when they no longer could (because that is what we just assumed), we’d have to be instant parents, and we needed and wanted to know what we could do differently and better.  It was very empowering, very enlightening to talk to other sibs.”