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!”
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?
- 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)
- Gather information on the rights of individuals with developmental disabilities ( the DD Act, the National Disability Rights Network)
- Work on your advocacy skills and speak the language (people first language )
- 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
- 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, you captured so much of the “fear, hard work, love, and being a good sibling no matter what” in your narrative. You have a heart-felt genuine way with your words, totally non-judgemental. Thank you for taking time to write them down and most of all for sharing them. Even though we often feel it most of the time, we really are not alone. Thanks for sharing your personal experiences and insights, Essie
Thank you so much for your comment on my blog! It’s a journey, isn’t it? At one ADD Envisioning the Future event, I heard one parent say while we envision a brighter future, we also have to “live in the now” (day to day needs). Everyone’s now is different. The question is… how do we get ourselves to, at the same time, envision the future AND move toward the vision. It’s easy to get stuck in the now… which, out of necessity might not be so great, right? Gotta keep moving forward. Thanks again, Essie. –Kate
Excellent points Kate!
I would love to have a discussion about the balance of advocating for our siblings versus angering those providing the direct care. I never want to make anyone mad but since my brother cannot talk, I have the responsibility of being his voice. I’m curious about your thoughts on that delicate balancing att.
Thanks again for your blog. Our issues need to be heard!!!
Wow, that’s a good question! And I have gotten it wrong on plenty of occassions. Gosh, lessons learned come the hard way, don’t they? Would you mind if I stole your idea and made it the topic of my next blog? Because I’d like to answer thoughtfully and completely. Let me know if that would be okay with you? Kate
please do! I would love to hear what others think!!
Hi Kate- really wonderful post. A couple of thoughts…
I think a lot of siblings feel a great deal of reticence and reluctance about being involved. Being aware of that is so important. Sometimes progress is discovering that no siblings want to or can support the person- better to be honest!
It is not a given that all siblings get along… 🙂
As I talk to more people with disabilities (including my own), I am struck by two things 1) how truly difficult it can be to describe ones’ hopes and dreams- sometimes we have to help the process along, and 2) they have very vivid opinions/perceptions of us.
Hi John, thanks so much for taking the time to comment on this blog post.
I don’t have any statistics to suggest whether there is or is not a reluctance to get involved. I have heard, anecdotally, several people say they have a reluctance to take responsibility and this overshadows the former.
Also, let’s be honest, for siblings who are older, the expectations were different back in the day. The custodial care model was prevalent. What we have to recognize is that times have changed, new options have emerged, and new risks have emerged (how ’bout those fight clubs!). Its important to make some conscious choices and to explicitly acknowledge our own rationale for those choices. Finally, and even if someone doesn’t have a relationship with their sibling, I encourage all siblings to consider minimally health and security issues. I don’t know how that works without building the support circle around the family member — and that is hard to do if all the people in the circle are paid and there are no family members.
I completely agree with you that we must be mindful of the individual, their needs and wants, and that we are there to support them to lead their own self-determined life.
Another very well done essay. I am hoping my sister who is the primary caregiver for our three brothers with disabilities will comment. Her life has been hugely changed by this responsibility and not in a good way. Very few seem to get it. Nora
Hi Nora. Thank you. My hope is that by putting some of these thoughts out there we open the lines of communications. We tend to keep so much of our experiences private. The load is lighter when shared. And as I mentioned in my appeal to parents… Having a “circle” really helps… A virtual one is good too! Thank you for taking the time to write… Kate