Sibling to Sibling: Feelings of Guilt

When I was a small child, I went everywhere with my mother. Mostly we went grocery shopping. That’s what we told my dad: “going shopping.” Really we went to homes of other parents who had children with serious disabilities. My mom was a great resource for people — people who were housebound because of the needs of their child. I remember going grocery shopping and then “just stopping by” someone’s house while we were out. These were really check-up visits where my mom checked in on her friends, brought them much needed groceries, and had a cup of coffee with them. As a result my earliest recollections are of being surrounded by individuals with various significant disabilities.

I’ve never shared this with anyone, so it’s our little secret, okay? At some point I starting hiding upstairs and “practising” various disabilities. I would go blindfolded. Stuff my ears. Hop around on one foot. Not talk for a full day. My father caught me one day. I didn’t know he was there. I was blindfolded and had plugged my ears. I had advanced to multiple disabilities. He grabbed me by the shoulders and when I took off the blindfold it was quite shocking to look at him. I thought his head was going to pop off his neck. I could see it getting bigger and bigger like a cartoon. My instinct was “run for cover” but he still had hold of my shoulders. He spoke very quietly and slowly… “Jesus…Mary…and…Joseph…what…are… you…doing?” Stuttering I explained that everybody has some sort of disability and I wanted to be prepared when it was my turn. After saying a prayer, he “sat me down” to talk about it. He told me that he prayed that it would never happen. And if it did, we’d deal with it then but it wasn’t something any of us could prepare for. Just because they had Walter, they really were no more prepared when they had David. I listened to my Dad’s advice. I stopped practising. But, one thing I didn’t share with my dad that day was that from my first moment of conscious and reflective thought, I thought: “that should be me. ” That I was the one who was meant to have disabilities, not David. Statistically, the youngest of 11 children. My father 52, my mother 40 when they had me. What were the odds that *my* development would be more typical than David’s?

SURVIVOR GUILT! 

Guilt can stop you in your tracks, or it can propel you forward.  You may be the primary caregiver, or you may be a sibling who has never even met your sibling with developmental disabilities. In either case (or anywhere in between) you may feel various feelings related to your relationship with your sibling. For myself, I have recurring feelings of guilt, and I work to deliberately manage through them. Here are a few tips that I have found to help me continue to move forward:

• Name it when I feel it. Ah, the guilty conscience. When I can name it, I can figure out why I feel that way and at least try to do something. I’m a do-er. I always feel better if I at least try to do something.
• What is it other than guilt? Don’t be afraid to dig deeper. What else am I feeling? Anger? Resentment? Frustration? Sorrow?
• Give myself permission to have the full range of emotions and don’t get angry with your self for not being your “best self.” My “best self… the vision of the ideal caretaker.. is my mother. Now that’s something impossible to live up to!
• Make sure your behavior is aligned to your values. Whenever I cross over the “value” line, I feel that in my gut right away. I call this the “gut check” and I always know there is something I need to do in my own behavior when this has happened. I remember the one day when I was in elementary school and my brother’s class was paraded across the school yard. It took me by surprise. The class never ever came out when everyone else was out. I was prepared at home, on the street, on our porch. But, I wasn’t prepared at school when the school kids started chanting the “R-word.”  I did nothing. Paralyzed. I was sick with myself for, well, forever (gosh, it still makes me sick when I recollect it). That never happened again. I was never unprepared again. Gut check.
• Oh, I guess my last personal tip is: Confession is good for the soul Hence this blog post! I feel better already! Share with others. It might not be within your family but you can always share with the sibling leadership network: http://www.siblingleadership.org/

If you are a parent with younger children, you might want to take a look at sibshops: http://www.siblingsupport.org/about/copy_of_index_html. Get your children talking to others in a safe environment. Like me, your children probably have things they would never confess to you.

If you have any recommendations to share with others, I hope you will post them here.

Postscript: You know, the upside to my survivor guilt?1) I believe that every life has value — mine would have no less value if I was born differently 2) In addition to value, I have the opportunity to give my life meaning. 3) I wake up everyday giving thanks for what I have .

Yours in community,
Kate.

Sibling to Sibling: Working with Direct Supports Professionals

NOTE: Thanks to “Missy” who posted a question about working with direct supports professionals — balancing between trying not to upset the boat (upsetting the DSP staff) and standing up for the rights of your sibling. First, as my brothers Direct Support Staff will tell you, I do not have this figured out. But, I will share with you what I learned, what seems to work, and what still frustrates me. We welcome and encourage other people to comment.

Background: In our case, David is not personally responsible for hiring his own direct support staff. We work with a provider. The provider hires the staff, assigns the staff, there can be good matches and bad matches. And, of course, there is staff turnover. When you’re talking 24×7 supervision, that’s a lot of people. David and I made out holiday cards for 12 different individuals just for his residential care. There are individuals who come and fill in shifts. Temps. And then there are day program staff. I do not know who is with my brother at any given moment. I mean I don’t know which person is with my brother and often if I did know who, I wouldn’t know who they are. That is the frightening reality.

Speaking of the frightening reality, here are my top 3 daily fears:

1. Fear of overloading “the system”. Too many complaints, you become just 1 big complaint and then you are completely ignored or humored.
2. Fear of letting things slide. Wrong-doings swept under the carpet, then you haven’t done your job as an advocate. A little bit sliding all the time can snowball into an avalanche.
3. Fear of retaliation. The worst fear is a concern that if you really piss off a direct support staff your sibling may suffer at their hands — either through neglect or worse, through specific actions. My brother is vulnerable, dependent on 24 hour support, and cannot call out or run away. For those of you with a family member who has more severe disabilities, more medically engaged…you know that an act of omission can have dire consequences.

 

Fear and Trust

I want to be aspirational. I work hard to live in continued hope of a fabulous future for my brother. The problems, however are in the “now.” And the consequences are tomorrow… when I have gone and David is alone.

Fear is the dark side of the lack of trust. Last year, I did some best practise research in a different state. I went to a provider who was really working community living. I wanted to see how another state and agency managed this best practise. I spent the day with all of the staff and shadowed them on their jobs. Finally at the end of the day we had a roundtable discussion. I asked: “As a family member, how can a person like me (in my role) work most effectively with people like you (in your role)?” Every single person sitting around the table said “you have got to let go of some of the control, the details, and trust in us.”

In Loving Memory of Walter

I reflected on this during the long drive home and repeatedly afterwards. They have a point. I don’t trust. Why not? The risk is too high. My brother, Walter, choked to death eating a peanut butter sandwich (he had known trouble swallowing — no gag reflex — and “shoveling” and was left alone in the kitchen with peanut butter sandwiches left laying out). I confess that I will not be able to suppress this fear. And this fear is exacerbated by the frequent anonymity of the staff on any given day. I try to find ways to manage the fear factor. Daily. I absolutely must concentrate on the positive.

What Seems to Work

The hardest thing is coming to terms with “least bad” reasoning. Let’s face it, if you have a loved one in any type of care facility or care program you are often faced with making “less bad” decisions instead of great decisions. I long for the time  when our reasoning and decision making is aspirational versus less injurious. This is my hope for the generation coming of age in the next 10 years.

• When I can’t hope to learn all the staff, I have gotten to know the management and supervisors in charge of the day program and the residential program. I have their phone numbers on speed dial in my cell phone. I talk to them throughout the course of the year. Not just during planning meetings. I call meetings so that the IDT meeting is not the only chance to talk.
• I work hard to provide materials to let people get to know David. Last year I put together this little pamphlet for David’s staff so they could quickly get to know him (David Fialkowski, All About Me). It was good for temp staff. It worked for a couple months. So that’s something else I learned. What works is stuff that is standard, repeatable, constant. That’s what the “system” is set up for. My “try this try that” — doesn’t work. I used to be disappointed. Now I’ve learned that I need to do things that can be reproduced, not just for David but for other individuals who are served by the same provider.
• I constantly pick and choose my battles. This is relatively new. My mouth was on auto-pilot: see something, say something. I had to learn (still learning!) to automatically filter and prioritize. I prioritize based on a) most important first (health and safety) b) treating David like an individual with self determination c) things that can help the other individuals as well as David. This filtering leaves me unhappy. There are battles I swallow like the fact that the day program building management asked them to ride up in the service elevator. Or that the office doesn’t have a wheelchair button to automatically open the door (why does it need one, there’s always staff with them?)
• What could I do better? I could make more of an effort to get to know the people around David. But, what would be even better is if there was a circle around David so that it wasn’t just me. More people calling his house and asking “who am I speaking to? how are you today? how long have you been working with David? do you have children? how long have you been working in the field,” etc. I just don’t have enough hours in the day. I just about manage asking about David. As I mentioned in a previous post, everyone needs a circle. Share the load, rotate the calls. I hope you have one! I mean, wouldn’t that be a great idea: to set up a calling circle? Rotationally call on each other’s families? Use a contact database like sales people do… maybe even call people who are in “crisis” and check up on them and their care … but I digress….

Treasure Those Who Work

There are plenty of support staff who do a great job. And when you find one, they are a gem. My brother has had some staff stability in the last few years (since he moved to his new house). For the moment, we have staff who’s concerned about David in a long term basis. We form attachments as a family. We can invite these people to accompany David to family weddings, professional events, etc. And once there is some staff stability we can start talking about things like self determination, using the iPad for communications, going places specific to David’s likes, hopes, dreams.

What’s YOUR Situation?

What have you found? What works? How do you keep an open dialog? Do you know your DSPs? Please share, we can all learn from each other…

Yours in Community,
Kate

Sibling to “Newly Minted Siblings”

There are a number of guides for “new parents” – parents of children diagnosed with developmental disabilities. They inspired me to share a few thoughts to those who may be newly indoctrinated into this redefined sibling role.

“Grief stricken. Depressed. Overwhelmed. Add in all the stages of grief, too!”

Even though my parents and I had many talks about what would happen after… meaning after one, and finally both, of them died… I was still unprepared for what was to come next. The responsibility of another person. The oversight of a support services. The comparison of myself to my mother. The guilt for falling short. The fear that my lack of knowledge, time, insight, would result in serious impact to someone I love. The fear of failure. Uugh. The depression I felt at the lost of my parents (my father having died just 2 years before) deepened with the feeling of being overwhelmed with this new responsibility. As the “chosen one” I felt very alone in this obligation and I was not mature enough to know how to manage it with my siblings. Further, as my parents had done, I felt that this was my responsibility alone and that part of my assigned job was keeping the “responsibility” of it from overflowing to my siblings.

Grief had a compounded meaning. Grief over the loss of my parents. Grief over becoming an “orphan.” Grief over what I thought was loosing my old self to new roles and responsibilities. That was a lot of grief to get through. I’ll be honest, it was not easy. Not straightforward. And it was not quick. And to this day I have occasional bouts of grief and sorrow. On the positive side, it is now more like “I wish my mom could see this!”

Role Redefinition

My first mental step was role redefinition. I had to define what my new role was to become.

At one end of the spectrum was the “caring sibling.”  The sibling who loves my brother. Who has an interest in his life. Who has him come to the beach on occasion and tries to remember Christmas presents for him. This was my original role. I liked this role. It was comfortable.

At the other end of the spectrum was my mother. My mother’s full time job was managing David’s supports services. She was often at his house. He was often at her house. She called the house every night. She had meetings almost every month. She knew every staff member by name. She remembered their birthdays, etc. She told me this was part of the package… once David moved into the community the relationship was no longer just with David. The care was not just for David. But now She was hyper involved.

What can you manage? What does your sibling want? What does your sibling need?  What I have learned over the last 15 years is that my role moves along the spectrum between the two points. Some years I can be or need to be or want to be more involved. Other years, I am less involved. It is not a constant. And, there is no relationship in my life that is completely constant in the amount of time, energy, and dedication — I can celebrate in the normalcy of this instead of beat myself up about it.

For those of you in the throes of this … I’ll bet you understand me when I say that

I have finally, after 14 years, forgiven myself for not being my mother.

Gather Information, Build Your Advocacy Skills, and CONNECT

 Parents learn about advocacy and working the system as they have been doing it even before diagnosis (in order to get a diagnosis!). Siblings are often sheltered and isolated from those learning experiences. Siblings are often thrown into advocacy when they are least able manage it – at a time of great personal stress and grief. Further, systems are not set up to recognize siblings as advocates. Siblings are often barred from accessing important information (HIPPA regulations), they are isolated from the processes, may be physically distant. There are a lot of barriers to overcome and frankly it’s easier to give up, hand over the care to a caregiver, and rest at the “family” end of the spectrum I mention in role definition, above. If somehow you land on this path, I understand completely! I also know that it might nag at you over and over again and the longer it goes on the LESS you feel capable of doing because the problem seems to be getting bigger!

Those of us with responsibilities must minimally practice “no regrets” advocacy.

Being a sibling, there’s nothing left of ourselves to practise “woulda coulda shoulda.” Here are three levels of involvement for you to consider.

 

LEVEL ONE: SECURITY … ADDING A LAYER OF PROTECTION AROUND YOUR SIBLING WITH DEVELOPMENTAL DISABILITIES

You absolutely must play some role in the life of your sibling with developmental disabilities. At the very minimum, in any setting, you want the provider to know that this individual is connected to a family that cares. If you do not do this, it puts your sibling with developmental disabilities at risk. This means, sending cards, calling to check on your sibling, and (if your sibling is living in a provider setting) on a regular and unscheduled basis you must go visit your sibling.

If you are not the sibling who is the primary caregiving/advocate you should still do these things! Even if you have to come in from out of town for a day. Why? You must increase the odds of safety. This is true if your sib lives in an apartment on their own, in a house with others, in a group home, and certain if they live in any congregate setting. Let me give an analogy. They say that if you have the sign of an alarm outside your house that is almost as good as having an alarm inside the house. This is what I’m talking about. The simple fact that you have some level of involvement helps put a level of security around your sibling. It says “someone is watching.”

Note: this might be ground you have to work out with your sibling. You don’t want them to feel that you are negating them or being too overbearing. So talk it through with your sibling so they know what’s going on.

LEVEL TWO: ADVOCACY… ADDING VALUE TO THE LIFE OF YOUR SIBLING WITH DEVELOPMENTAL DISABILITIES

Okay, so you want to do more. You want to be involved. And you want it to matter. First and foremost, you have to be the watchdog of the RIGHTS of your sibling with developmental disabilities. Can they watch out for their own rights? Encourage your sibling with developmental disabilities to get involved with a self-advocacy organization like Self-Advocates Becoming Empowered . Other self-advocates are great peer mentors and can help support your sibling in their own advocacy. At the same time, you should learn the rights of individuals with disabilities. The ARC has a high level overview.

LEVEL THREE: ADVOCACY+ … HELPING YOUR SIBLING LIVE THEIR OWN INDEPENDENT AND CONTRIBUTING LIFE
At the upper end of the spectrum is really providing that extra level of support so that you are no longer talking just about security but you are there to help your sibling with developmental disabilities contribute in a meaningful way to society, maximize his or her potential, express their independence and self-determination. And these are all possible for any and every individual.

Okay where do you start?

1. Talk to your family (talk to your parents before they die and find out what are their hopes and dreams. Talk to your sibling with developmental disabilities and find out THEIR hopes and dreams. If they can’t tell you, spend some time with them and learn what they love and you must learn what puts them at risk. Talk to your other siblings and find out where they want to be on the involvement spectrum (okay, note to self: I have to do this with my sibs)
2. Gather information on the rights of individuals with developmental disabilities ( the DD Act, the National Disability Rights Network)
3. Work on your advocacy skills and speak the language (people first language )
4. Get connected to a community  (for example, Sibling Leadership Network, Siblings on FaceBook … Connect to me first and then we can get you connected, one by one, to others, join the ARC
5. Do something on a daily basis. Make this part of your daily routine. I don’t know it all, I have plenty to learn. I learn more every day. But the honest truth is that it took me 15 years to wake up to the fact that

 Being a sibling of an individual with developmental disabilities is a way of life – it is not a phase. It is a marathon, not a sprint. To run a marathon you need daily conditioning.

Yours in community,
Kate

Sibling Update: It’s a Wonderful Life

I know it’s heresy to say this but, here it goes: I hate the movie “It’s a Wonderful Life” with Jimmy Stewart. I never liked the thought that life had passed him by and here’s why he should be happy anyway?! On the other hand, the one part of the movie I like and agree with is that our lives are all interconnected and you can’t know the impact of one life on the lives around it. Small pebble. Big ripple.

My Happy New Year Post is a tribute to that movie and to list the impact my brother David has had on me. Really, my life wouldn’t be a fraction of what it has been without my brother David. He taught me so much, it’s long overdue that I give him credit.

David taught me

• One person can make a difference. And that single individuals when united can move mountains. All grass roots movements start with one individual here and there and then it builds. This was the original form of social networking expressed to the point of power.
• Plan all you want. But, know that life happens. Be prepared to throw the plan out the window. Bend and go with the flow when you need to. Maybe something better ensues. For example, made a plan for a visit with David to Longwood Gardens. Traffic. Trip takes too long. David fed up! Okay, abandon plan! That’s cool. Coffee and donuts at Dunkin Donuts?! Sounds great!
• Try, Try, Try again. For 10+ years my mother taught David to walk. One day he got up and walked across the room. Never give up.
• Focus on the outcome not the task. Working 15 years of IDPs has taught me that the team has to be united on the outcome. If so, we get there. Focused on the task? All you get is the task.
• The bigger the universe, the less “atypical” we are. Really, wiki estimates there are 100,000,000,000 languages on this globe! So, in the global universe, vocalizations are NOT atypical forms of communication. Think about it. Broaden your world.

Because of David, I

• Have had a terrific career as a transformational change expert
• Have thrived living and working around the world
• Have unlimited hope
• Believe that all people have unrealized potential
• Think that the most precious commodity is “options” not money
• Never give up

So, I want to share with you… the gift of life lessons to siblings can be differentiating. They equip the sibling to live in a “global” world and this will be even more necessary tomorrow than it was yesterday. And finally, I want to say it IS a wonderful life and EVERY life should be celebrated.

Celebrate this New Year!

Yours in Community,
Kate