What do we mean by wanting our loved one with a developmental disability to have more independence?
And, why is helping your loved one grow their independence so important?
In this week’s video/article, I tackle these questions and share the story of Sarah’s journey to independence. Click below to watch the short video.
If podcasts are your thing, I’ve started to put new the audio from these lessons on the Empowering Ability podcast. Search ‘Empowering Ability’ on your podcast player.
Now you might be asking yourself, Eric, why do you talk so much about independence? And I want to share a story with you that may help give you a bit more context in terms of why I talk so much about independence. But before I do that, I want to talk about what I mean by talking independence. Independence is supporting your loved one to develop the motivation and the ability to do more of the everyday things on their own, or maybe with a little less support.
So why do I talk so much about independence? And why is it helpful for you? I want to share a story. In 2018 we planned for my sister to move out of my mom and dad’s place and into mine. Mom was the primary caregiver and was doing everything from helping Sarah get up in the morning to meals, planning her day, transportation, and helping with the evening routine. So almost everything. So we were stuck on shifting away from mom doing all those things. If mom wasn’t doing all those things, how would Sarah have her needs met? How is she going to be adequately supported? So we did have part of a solution; we could access three hours of paid support per day for personal care. That was super helpful, but that was only a part of the solution. We knew that my sister would need more support than just those three hours a day.
So we’re figuring out, well, how are we going to make that happen. And the reality is, is that we were vastly underestimating Sarah’s capability. Before that time, I had thought of my sister as incapable and held very low expectations, as did my parents. And low expectations are the reality for many people with developmental disabilities. So we needed to switch out of that incapability mindset. And we started giving my sister more opportunities and providing her support and coaching to grow. And we saw her independence, her ability to do and motivation to do those everyday things increase exponentially. So, many of those things that mom was doing for Sarah, Sarah started doing on her own. Okay. So that’s why growing independence is so important.
So when you’re thinking about what life will look like for your loved one, maybe for a time when they’re not living with you… What does that support solution look like? And often, we just jump to paid support. My family jumped to paid support. And the reality is, is if mom wasn’t doing it, it was going to be paid support, or it was going to be Sarah learning how to do new things. Or maybe it was going to be some natural supports. So we can consider a mix of these types of supports, rather than just being locked in on paid support. Because often we don’t have access to paid support or good paid support or the right paid support. And helping your loved one grow their independence is often a forgotten thing. And I want you to start to think about it because it is something you can work on now. It’s something that many families have supported their loved one to grow tremendously during this COVID time period.
And really, growing that independence starts at home. Often we think, well, we can have someone else teach our loved one to develop their independence, whether it’s some program affiliated with the school or a day program. But from what I see, that doesn’t translate into actual independence because we’re in our pattern, rhythm, and way of doing things in our home. So for our loved one to grow their independence, it actually involves a change in ourselves, a change in you as a caregiver. You have to change your thinking to believe that your loved one can grow. And that we need to hold higher expectations. So we will continue to talk about independence as the weeks go forward here. I’m going to continue giving you some tips on how to support your loved one to grow their independence and grow your loved ones’ motivation and ability to do more of those every day.
Leave me a comment here. I’d love to know your thoughts on this video/article and how it was helpful. And I’m Eric Goll together. Let’s take a small step forward this week.
This is so refreshing. Few people I encounter with my son (just 17 with Down syndrome) think in terms of independence or helping him gain the most independence he can, and it has been hard to find ways to work with him beyond home. He (and his siblings before him) has been homeschooled. Since I became a single mom (and he has gotten older and matured), he is learning more and more skills at home. He helps with meals and makes some of his own. We have chickens and he does most of the chores for them.
He wants to have his own ‘tiny house’ and a chicken house and a shed! In August, he started working twice a week as a bagger at a nice grocery store. They are wonderful with him.
Sometimes he loves the opportunity to learn and grow. Other times he resents it (his dad cooks for him when he visits there, I don’t know if he has any other chores there). When he balks at chores, I have a couple of options. First, I ask if he still wants to have his own tiny home and I remind him that to be able to do that well, he needs to do grown-up things such as [the thing he currently doesn’t want to do]. Usually, that is enough, but if it isn’t I just state, matter of factly, that [the thing(s) he doesn’t want to do] needs to be completed before he can [do the thing he wants to do–often watch a show]. Then I leave him alone to wrestle it out. It doesn’t usually take long for him to make a good choice, although we did have a learning curve, and we aren’t perfect.
I agree that most available programs/supports are not helpful to move towards independence. And it has nearly always been better to figure it out myself or find non-institutional resources (like his grocery store job).
I’m looking forward to learning more about what I may be missing as we prepare for his future.
I really appreciate the information! thank you
I believe in holding high expectations yet not throwing out the “baby with the bath water”.
If they falter they need the “appropriate level of support”.
I’ve seen the system struggle to understand what that is.
Natural supports know the best yet not every body has this luxury. OK so it shouldn’t be a luxury but admit it Canada shares the ideal “American Dream” not to forget that the family model was left long ago post-70s and maybe even started in the 60s.
(Not that dds or ASDs can’t have there own home inside life-leasing and/or supportive roomate)
In my own case the bar is set so high I’m struggling to attain. Because I came from photography, AV, technology and computers I have a leg up intellectually.
That doesnt prevent me from freezing in community, clinic or my bed, being mute, being “paranoid”, not recognizing my workers, being minimally verbal, in the darkness, going in and out of reality (delirium or psychosis ?).
Since there no case coordination and my parents are 70s the support system is chaotic and haphazard.
Since there no complex care clinic or neurogenetics clinic there is no coordinated medical management.
I actually think I’m not getting g the “right independent support” and up against “militant independent ideology”.
What if the person balks and refuses?
Colleen: most people want change in how they are living. They might not respond to being asked about becoming more independent, but, however they communicate, there will surely be opportunities to identify changes they would like, and some of those changes will lead to greater independence – even if they are perceived as small changes.
That’s not to say that family or staff might not need to make changes themselves to reduce a dependency they’ve created that is holding the person back. This is a lot harder than listening and responding to what a person wants as it requires others to make the changes, so the person has the room they need to grow.
Hope that helps.
I have never thought about having higher expectations-thank you for your perspective 🙏