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
- There is no permanency. Whatever solution you find — residential, day program, employment, etc — it cannot be permanent.
- There are no guarantees. However much you plan, the unexpected will emerge.
- Walls do not protect. They hide.
- Even children with the most severe disabilities will have to cut the cord. Ultimately they will leave the nest.
- 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.
- 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.
- 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.
Sanity “Moments of Truth”
When I worked in business, we had these things called “moments of truth” — the moments when the business “touched” the end customer. And that touch — regardless of who did it, told the “truth” about the company. About how they work, what they value, how good their processes are, how flexible they are dealing with problems, etc. These “moments of truth,” through time, meant that a business could be a raging successl or suffer horrible losses because of how in tuned they were with their end customers. As times have changed and we’re now well into the “Information Age,” we have 1000 ways to learn about those we serve and various means to maintain this information over time and build upon it.
“Customer-engagement is critical for the success of an organization and in a knowledge-driven economy, the power of information cannot be underestimated. ” (Fast Company)
“The key to achieving emotive success is understanding the customers’ needs and expectations. By doing so, companies can identify the most important interactions – “the moments of truth” – and prioritize delivery accordingly. The IBM customer experience framework integrates four key dimensions: emotive performance, products and services, tactile performance, and channels and touch points” (IBM)
I’m in a new field, now. A field in support of families and individuals with developmental disabilities. Many in this field are supposed to be “advocates,” who must manage needs and expectations on both sides (individual/system) and must do so with an emotive connectedness. As in business, there are some who are in touch with the individuals that define their work and there are some who are just in touch with their work — the day-to-day tasks without sight of the people they are impacting. There are some who are, unfortunately, removed from the day-to-day lives of these individuals. And then, like customer-service agents and sales people in business, there are some who got too close to the fire for too long and burnt out.
I have the best job in the world. Every single day I have the opportunity to talk to an individual or family member. I do not have the luxury to talk only to the ones I know. Or the ones I like. Or the ones who share my opinions and beliefs. The phone rings, I answer. Someone passes me on the street, I talk to them. We’re hosting listening sessions and I work to get people with various perspectives out to talk. “Let’s hear it, let’s hear what you have to say, what your life is about, and what you’re concerned about.” And these are all moments of truth. Two observations:
- We’ve stopped listening. Just like the political landscape of today, we’ve stopped listening to what people are saying. Instead we paint them in a white hat or a black hat and put them in camps “for” or “against” our perspective. We need to listen. We have got to have meaningful dialogue about difficult topics. In business we say it takes “5-why’s” to get to the root cause of an issue.
- We have a generational divide. The “old-timers” were here in the beginning. Pioneers of the movement. They remember a time when there was nothing. No rights to anything. There are the “new-timers” who know nothing other than having rights. For the new-timers, IDEA has always been around. The old-timers fear that things can go back to the way they were before. The new-timers don’t know there was a “before” — its only theoretical.
Sanity Rally on the Hill
Last week I met a guy at the bus stop named “Joe.” He said he was in the Special Olympics and the last soccer game of the season was this weekend. I asked if he was sad the season was over. “Yes, really sad,” but he was smiling. “You don’t look sad,” I said. “Well, that’s because Basketball starts next weekend!”
We continued chatting on the bus ride. Joe lives at home but has a job 5-days a week in food services with the Marines. He goes to the neighborhood diner on Saturday mornings. And in the middle of this conversation he explained that he was very afraid because he has a surgery coming up. He remembers a time when he reacted badly to getting a needle (kicked out) and as a result he was thrown to the ground, face down, with someone sitting on him and forcibly restrained. Hmmm. This conversation had a lot to digest. In one conversation, one person, we were trying to satisfy all levels of Maslow’s hierarchy simultaneously! Psychology, Safety… Self-actualization.
We have to create opportunity for “moments of truth.” We cannot close off perspectives we don’t like. We must continue to talk. We must understand our common grounds. We cannot ever stop listening.
What’s your truth?
Interdependent Lives 