Advice from a Sibling to Parents (Developmental Disabilities)


Siblings: David and Kate

A friend of mine asked me what I thought about a residential placement option he saw. He’s thinking of the future for his children with Developmental Disabilities. After a very long-winded response email, I decided “Hey I should put this to perspective to greater use.”  How bout a little advice from “the other side.” Honestly, let’s put it out there. Your number one worry is “what will happen to my child with developmental disabilities after I’m gone?” And the follow-up “how can I ensure their safety.” Yeah, many of you talk about big dreams for children but really, in your guts, you think “safety.” ( Some of you, secretly are going one step further and you’re thinking “surrogate.” After all, no one can love them like you do, right? How can you find a place that will care enough?) As a sibling after 15 years I can tell you that I wonder “what if I should die before my brother?” And “how can I ensure his safety?”

From the vantage point of 16 years AD (after death). Knowing what I know now, here’s what I wish I could have told my parents. Mom, Dad, there are certain rules of nature that you simply have to acknowledge. I know it’s hard because of the implications. But they’re real, let’s talk about them.

The rules of nature

  1. There is no permanency. Whatever solution you find — residential, day program, employment, etc — it cannot be permanent.  
  2. There are no guarantees. However much you plan, the unexpected will emerge.
  3. Walls do not protect. They hide.
  4. Even children with the most severe disabilities will have to cut the cord. Ultimately they will leave the nest.
  5. Risk exists for everyone. There is no way to eliminate all risk for your child. You have to get comfortable that there is a level of risk you must take.
  6. I am a sibling. Stop worrying about giving me an “obligation” or a “burden.” You have given me a brother. Family takes care of family.
  7. Given these rules of nature I cannot promise you that I will keep everything just the way you set it up. I’m sorry. I’ll keep it that way as long as possible but then at a certain point I am going to have to make changes. I promise to be mindful of your values and David’s needs and desires.

Given all of the above…. As parents, its expecting to much of yourself to find the “golden solution.” It’s not feasible. So, let’s go with you’re finding the best solution today.  What is the most important thing to do?  Develop a “circle.”  Develop a multi-generational social circle surrounding your child. Ensure that you are not the only person in your child’s life who is not paid to be there.

Take it from me. It took me 15 years to understand this simple point. Inclusion isn’t about a house or a trip to the park. It is not about how many times you “get into” the neighborhood. Its not something I can write 5 goals for on an IDT plan. It simply means that an individual is not alone. That they have their own “community/ies” (friends, family, people with shared interests and goals). These people are not paid to be part of the community. To be disenfranchised?  To be on the outside of communities versus on the inside? This is what makes a person invisible. Being invisible makes a person vulnerable.

Surely, as a parent, you can understand this. You’re worried about who could possibly replace you? NO ONE CAN REPLACE YOU. It will take a village of people to care as much as you care. To replace the eyes on the back of your head. The one thing you can do (do early, do often, never stop doing) is build the village. If your child grows up living within the village you build, they will always be a valued member of the community and a derivative fact is they will be less at risk, more fulfilled, and reach their full potential.

What parent wouldn’t want that? Start building now.

8 responses

  1. I am your parents…. my DD daughter is 34. She has 4 siblings older than she is. Two of them have homes where I believe she would be welcomed but 2 do not. And they all have their own lives and families. I wish I had this village you speak of – I have a partial one – my friends and my other children. No matter what you say it still seems like my lovely daughter is more of a liability than a sister since no one willingly steps up. I am amazed at your attitude and desire to do what is best for your brother. Thankful too.

    1. Hello and I am so glad you wrote. I am not speaking on behalf of your children but I will speak on behalf of myself. My parents were very involved. Pioneers. They lead the way for persons with severe disabilities. Even still they carried all the care of my brothers on their own shoulders. If I could talk to them today I would explain this new thing called social circles. I would have them look into microboards http://www.tceponline.org/topics/microboards.htm for a formal solution or a less formal (less financially intensive) solution is the support circles http://education.wayne.edu/wholeschooling/WS/WSPress/ArtBuildCare.html.

      One family member may step up. That doesn’t mean other family members won’t chip in. You can’t know. I’ve found that both parents as well as children are stepping away from an uncomfortable conversation. Why? Because usually it starts with “when I’m gone…” Hey, we don’t want to talk about when your gone. How ’bout talking about right now, instead? Learn together. Involve them in solutions: “What your sister could really use is someone who… loves stamp collecting or gardening…. Do you know anyone who’s great at this that we could introduce her to?” Getting people involved in the solutions, you already have the beginning of the circle. Think about what life your daughter would thrive in and start pulling various people in. 1 person at a time. Someone who’s good at arts. Someone who knows about money and employment. Someone who likes to travel… Its just like career networking. Only much more noble a reason to network!

      Don’t be affraid to have the discussion! Send them this link, if you want. Start the conversation. Today.

  2. Kate, I think a lot of what you say crosses into the realm of elder care as well. Being the only sibling near my parents as they aged, their care fell to me. For the longest time, I resisted the “circles” of which you speak. I felt I was not being a good daughter, or was shirking responsibility if I couldn’t do it all. Slowly, I came to realize those circles were invaluable, and I put a toe in the water calling upon them, and found heartfelt response. I chatted up the neighbors more and more, giving them updates on my mother, and found them incredibly helpful in daily, little ways, like bringing up the paper, shoveling her walk, stopping in to say hello, watching her as she made her way to the mailbox. Members of church called her, stopped by to visit, brought her flowers when she couldn’t make it to church, and visited her in the hospital. The mother of a friend of mine took her to doctor’s appointments more than once, and to lunch afterwards. After a time, I didn’t even need to be specific in my request – I found much of the help swirled around her, and it made both our lives so much better. I know it’s not exactly the same as a developmental issue, but your message reaches into so many more situations than you can even imagine.

    1. Helene, Thanks so much for commenting and sharing this with others.

      You’re so right! Thanks for mentioning this point of view. Really, doesn’t it relate to all of us? That’s how we succeed … within a social circle. The thing is, we have to decide to activate it and sometimes there needs to be someone to activate it for another. Glad that you responded.

      Kate

  3. Thank you for this post. It is helpful and wonderful.

  4. Hi Kate, Thank you for this post. I have three daughters, my oldest has some special needs. I need to hear this even though I’m not ready yet, I guess I think that I will live forever. I worry about her sisters feeling like they will have to give up their lives to always look out for their sister and I just want them to enjoy their sister not be burdened with her care. I have to put some thought to these circles. thank you. Mary

    1. Hi Mary, speaking only for myself…. When my mom died I was unprepared. Even though we had discussed it. My lack of preparation was that I knew that what I was doing before was just “sisterly” and what my brother seemed to need was what my mom did — she took care of everything. So, it was overwhelming when at first I thought I had to replace my mother. She had really big shoes to fill and that, actually, pushed me a way. I felt like a failure in comparison to my mother. It took me many years to find how to be me and provide my own type of supports in my own way especially given that I couldn’t make it a full time job as my mother did. So one word of advice I would give is to talk about what you’d like and that you don’t expect your daughters to become her mother. And, getting a circle together helps share the load. No one can do everything. Except a mother 🙂 Thank you for writing a comment on the post. The best to you and your family. Kate

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