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When I first began working in direct support, I received some cursory training integration and socialization. They gave us an overview of the history of supports and housing availabilities for the particular population we served, which had transitioned over time from almost complete isolation to improved integration. No longer is a person automatically institutionalized due to a disability: the adults we supported in their own or shared living spaces were encouraged and supported in being involved with general society as much as they wished, with an emphasis on discovering and supporting their individual choices and preferences. We were also taught that for some, socializing primarily within circles of other people who shared similar disabilities (and quite possibly better understood them) was something they personally preferred and our job was to support them in that. I learned a lot about not making assumptions, about not parentalizing the direct support relationship, and about respecting human beings as equal regardless of disabilities or society’s assessments of productivity.

Download your Network of Support Worksheet to use as you go thru this post:

 

If your child has a disability (and even if they don’t) it is important is to support them in identifying, locating, and deliberately choosing those places where they can get the best support. (You need support, too, but that’s a topic for another post).

Be certain to INCLUDE your child as you go thru this. One of your most important (and perhaps most challenging) jobs as a parent is to hear and amplify your child’s voice. Don’t just fill this out for your child; ask them how they would answer these questions. Reword the questions as appropriate. You may know most of the answers, but some of your child’s answers may surprise you. Whatever their answers, go with it, even if you have a different point of view. If your child does not communicate with words, remember that there are lots of ways to communicate non-verbally; all behavior is communication.

I will not attempt to address all the kinds a support a person could need, but will primarily focus on social and relational supports.

Download your Network of Support Worksheet to use as you go thru this post:

 

1. Close friend(s)

This is your inner circle. The people you trust the most. The person or persons you are able to safely vent to without repercussions. It is not necessary to have large groups of close friends; it is imperative that we have a couple. They may or may not share the same struggles in life that we do: but one thing is certain — they will care about us and there will be a relationship of mutual respect. They don’t tell you that your experiences aren’t real and they respect your point of view. These are the people who don’t leave or quit checking on you when you don’t have anything positive to talk about.  Who are these people?

 

2. People with common interests

Those interests could be religious or spiritual. They could be hobbies. It could be that you share a common stage in life. These are the people that you hang out with on some sort of regular basis. They don’t have to be your best friends, but they are the people who notice when you don’t show up, and you like being around them. (Caveat: this could include people from your place of employment, but not necessarily).

3. General community

Your mail/package delivery person <– the one who knows your name and your tastes in magazines.

The clerk at the local grocery.

The friendly face at the bank.

These are relationships that people in smaller communities typically take for granted, and people in larger communities often forget to cultivate. Sometimes we like our anonymity, but these relationships are some of the most under-valued and under-cultivated. Seek out familiar faces in the businesses you frequent. Learn their names. Ask about their day. Or just smile. Include these faces in your routines and as part of the stability you crave.

4. Therapist

This one is related to the inner circle, but is distinctly different. Sometimes we need more than our friends can give. More objectivity. An outside point of view. A professional skill set. Mind you, a good therapist might not be easy to find. If you’re not comfortable, try someone else. It’s important to have a good fit, otherwise you won’t get what you need or what you are paying for.

 

These last two are similar, yet each have their differences. These are groups of people that are experiencing similar struggles, but start out as groups of strangers. You join because you share something in common. A life circumstance. A diagnosis. A disability. A goal or passion. A stage in life. A class or course. They can be formal or informal. You may find all the support you need from one type, but more likely you will find different kinds of support from different kinds of groups for different kinds of needs.

5. Local Support Group (s)

We have less control over how other people judge us (for good or bad) because we can’t control how much they see/know. We are also less likely to be able to hide behind an online persona. These are the people who can give you a hug if you need one, the people who can meet you for coffee later. The relationships are just as real as the online ones, with the added dynamics of in-person connection.

6. Online Support Group (s)

Depending on the size of the group, there is usually someone available if you need a question answered. They may not be local enough to bring by soup & crackers when you’re too sick to stand up. Online/written communication might be more accessible but they can’t read your body language or hear the tone in your voice when you communicate (unless you’re using some form of video chat, and then that’s a different story). Online support groups tend to be more plentiful; shop around until you find the right fit.

Both online and in-person groups can open a person up for exploitation, but both venues offer great returns on investment. Never stay in a group where you are being bullied or taken advantage of. That happens enough in life without subjecting yourself to it voluntarily.

Download your Network of Support Worksheet to use as you go thru this post:

 

For most people, a mixture of online and local groups is likely a good fit. You may find that each group meets a different need. It is rare, and probably ill-advised, for all the community support we need to come from one small group of people.

 

Think about your needs: What kind of supports are missing in your life? What types of interactions make the best sense for you? What is one thing that you can do TODAY to improve your network of support?

 

When you pick your one thing, I’d love to hear about it! Comment here or post on FB and tag @lorasweightedblankets

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