Relationships vs. Rules

alone_on_nantucket

(An audio version of this blog is available at the end of the post)

“Loneliness is the only real disability.”

(David Pitonyak)

This is a quote that is used often. Though I’ve credited it to David Pitonyak, even he is not sure who said it first (Judith Snow? Beth Mount?). I imagine that’s because it makes sense, that we all come to this conclusion over time.

I mentioned before that I recently finished reading The Shack by Wm. Paul Young. It left me with many thoughts to ponder and quotes that capture them. Including this one regarding the value of relationship vs. the structure of rules.

“It is true that relationships are whole lot messier than rules, but rules will never give you answers to the deep questions of the heart and they will never love you.”

The Shack, pg 198

These two quotes together leave me with the following question: If relationships are key to experiencing value and quality lives for people who experience disabilities, why do we continually increase the rules by which they must live to receive our support?

Andy, my son who experiences different disabilities, is 20. He’s in that place where he’s slowly moving into what is considered “adult life.”  Because of earlier decisions, he was able to gain access to Social Security Income and a Medicaid Waiver when he turned 18. He was lucky not to wait.

In theory, this sounds like more help that we’ve ever had. There is assistance to hire people to support him now, so that I might be able to work. What’s the catch?

The rules. The relationships.

Andy lives with us, and I mistakenly thought that we would be able to access his money to hire people we deemed appropriate to follow Andy’s interests to build a quality life and support network.

Silly me.

It seems we must write measurable goals so that folks can show what they’re doing with him. This need for goals and objectives is new. Our early goals for his Individual Support Plan were broad. The goals did cover the important pieces  for Andy to live an acceptable life at home with his parents. It’s not enough to support him to get out in his neighborhood to make friends. We have to know how to do that, how many times a week we he will do this, and what skills he needs support with to do this.

Sounds like an IEP (Individual Education Plan used in school settings) to me. Those haven’t worked too well either.

Aj-On-bridgeFollowing the rules, even if one is written regarding friendships, does not mean he won’t be lonely. True, following the rules means he has a direct support provider – Andy’s not one who will be independent in the community or at home. However, we all know it’s possible to be extremely lonely even with others present. Especially if they are paid to be there.

Rules do not create relationships or friendships. They create structure and walls.

What works best with Andy is to develop a relationship. build activities around relationships. He is more engaged, more independent, and more fun to be around (thus more fun to support) when  he feels he is with a trusted friend.  He is all about the interaction with people who are happy to see him, enjoy spending time with him, and are his friends.

It’s tough to know how to write a measurable goal and objective for  creating and maintaining a relationship – something that’s really not very objective or measurable at all.

Not to mention that fact that all relationships – regardless of who is in them- change with interests and time. It’s natural for things to ebb and flow.

But if Andy’s relationships and interests change, it means a new set of goals and objectives so his medicaid money is spent appropriately.

There must be a better way to build a bridge between safety, fiduciary accountability, and relationship. That includes, of course creating opportunities for natural supports in his life, which is more difficult than it sounds. I’m not sure yet what that bridge will be, but I hope to find it.

In my opinion, rules stifle the ability to create true relationships. So if the rules reign in a person’s life, then disability is more pronounced due to the isolation and loneliness they bring.

I plan to remember this as I continue to support Andy – reducing loneliness is going to have the greatest impact on his life….and mine.

Andy and Meagan getting acquainted.

Andy and Meagan getting acquainted. The start of a long-term friendship.

_______________________________________________

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About Joan

I am first, and foremost, the mother of two amazing young men. One of them has Down syndrome, Autism, Celiac Disease, and uses few words. I focus my work on providing support, training, and creating tools that will create quality lives, quality health, and connected community for him and his peers. It's true. We can all have a quality life, with quality health, and connected communities in which we thrive. Let's go on this walk together! You can learn more about me and my work at www.DownSyndrmeNutrition.com
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2 Responses to Relationships vs. Rules

  1. Miriam Kauk says:

    Joan,
    Your post is quite touching to me. This is what I want for my daughter–relationships. And, this is exactly what she most desires in her own life. Thanks for the post.
    Miriam
    http://www.einstein-syndrome.com

    • Joan says:

      Hi Miriam –

      I think it’s what we want for ALL our kids – regardless of disability. I do find that the system – in it’s search for accountability and project6ion – gets in the way. And yet, in many situations, is necessary! Finding that balance and a reasonable way to manage things is the hard part. Turns into a full time job!

      Thanks for writing!
      Joan

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