Empowering Ability

This Week’s Guest

Eric Goll offers online courses and training to support our loved ones with developmental disabilities to be valued citizens and create their own Awesome ‘Ordinary’ Life. He is located right near west of Toronto, Canada. His experience with his own family sparked his desire to bring what he’s learned to the masses.

Eric’s Story

Eric always knew his family was different from other families. As the younger brother of a sister with a developmental and physical disability, he was defensive when others stared, and aware that his sister was different. But he wasn’t really directly involved in his sister’s life, per se. He went off to university, got his own place and a job and received a call at work one day from his mother who said, “I can’t do this anymore. Sarah needs to move out.” His mother had caregiver burnout. She had done everything for his sister for 30 years and couldn’t do it anymore.

Eric says that while his sister was now a young woman in her thirties, his parents were still treating her like a child. Their thinking hadn’t evolved and they still did everything for her from planning her day, preparing her food, getting her to social activities, lifting her, etc. Eric had a decision to make. Did he want to get involved and help or leave them to figure it out on their own? He decided to help and so they first looked into the service model which was not very helpful. They had to look at alternative options. They started to look at what a more ‘ordinary’ life would look like for his sister.

A ‘Special Needs’ versus an ‘Ordinary’ Life

Eric says that a typical ‘special needs’ life is someone living at home and going to a day program, or living in a group home. But Eric explored another path of his sister living a more ‘ordinary’ life. What would it look like for her to freely build new relationships? To become more capable? To live in her own home, maybe with a supporting roommate? To explore paid employment? Yes, there’s a ton of things to figure out, Eric explained. They began to envision what this could look like and then she moved in with Eric for two years. This is when Eric learned about the capability stuff and became a Certified Life Coach.

Next, Eric’s sister moved out on her own and the plan was for her to have a neurotypical roommate to have someone else there who could be there to make decisions and meals together, etc. But his sister wanted to live on her own. They figured it out and she’s doing great for about three years now. Five years ago her mother was doing everything for her. Today, she gets herself up in the morning, gets herself ready, makes herself breakfast, prepares herself a lunch, and has paid support to help her with self-care and dinner. Before the pandemic she volunteered at the YMCA, she has a support circle with relationships. Her life is pretty awesome now.

Seeing Capability

I shared with Eric that I think a lot of parents are scared to let their kids do things on their own for fear of them failing, hurting themselves, or being laughed at and we are also creatures of habit so we keep doing what works. We forget that our child is growing and developing and has so much capability than we give them credit for. This is what spoke to me with Eric’s work. It’s a big step to realize that our loved one is capable and one that we wouldn’t consciously think we’re not doing until we really think about it. Eric says this is a mindset.

The challenge, Eric continues, is that the societal dialogue and thinking is that people with developmental disabilities are incapable, and because of that, low expectations are put on them. We adopt that thinking as families. The medical system tells that to families, too. We believe it, but it’s likely not true, Eric reassures. The school system also reinforces these expectations. It’s up to us to see the potential because it’s likely that others won’t. I added that people around us get cues from us based on how we treat our children as well. 

Eric’s tips include ‘See Your Loved One as Capable’, ‘Stop Directing and Telling’, and ‘Support Decision Making’, to name a few and in DIR/Floortime we also try to get away from a compliance model and inspire relating, communicating, and thinking as Eric does. Eric also takes about letting your loved one lead, as we do in Floortime as well. Eric also says to go at your loved one’s pace as we talk about meeting your child where they are developmentally and slowing down. He also talks about taking small steps and about routine and repetition.

Let Them Fail

Eric says that so often we are protecting our loved one, but the problem with that is that one of the main ways we learn is by trying things and seeing a result that won’t always turn out how we want. If we always intervene and interrupt the natural consequence, it breaks the learning cycle and our loved one learns that someone will always step in and save them. Eric brings up the concept of the Dignity of Risk first outlined in 1972 by Robert Perske where taking the right amount of risk is a key way in which we grow.

It’s about leaving an open space and invitation for our loved one to attempt to figure it out, which means we have to be comfortable with the uncomfortable moments that this can bring up. Eric says it’s such an important skill as well to teach our loved one to ask for help. We often see what our loved one wants and we do it for them instead of giving them that learning opportunity. Your loved one has learned that we will look at them and figure out what they want or even speak for them when people ask them a question. Give them the chance to communicate and ask for help themselves in case we’re not there one day.

I described how I enable my child in many ways that I could start doing in a different way to facilitate his learning. For example, someone might ask my son how his weekend was and he might respond with something completely seemingly unrelated by going on about Toad in a Kingdom and I will always bridge the gap by jumping in and saying, “Oh he’s telling you about the video game he played this weekend“. I jump in all the time. But I do sometimes say, “Wait a second. They don’t know what you’re talking about! What’s that?” and he might say the name of the video game.

As he develops Theory of Mind and the capacity to see another’s perspective in the fourth Functional Emotional Developmental Capacity, he may not pick up on the cues that another person doesn’t understand his response. I also gave the example of him struggling with something and giving up when he is capable of solving the problem himself, such as when his toy needs a new battery. Often he’ll default to, “Help, Mama! I can’t do it!” and by the time I walk over to help, he’s changed the battery himself. I will say to him, “You can figure it out!” but saying that cognitively is very different than him feeling that he can do it himself.

I also am weary of saying things like, “Good job! You did it!” because you don’t know if the child is just doing it to feel that approval from you versus having that intrinsic sense of accomplishment from doing something themselves. Eric says that he coaches families to ask, “How do you feel about what you did?” so that it stems from an internal sense versus an external motivation from us.

Focusing on Development

Most of the families Eric serves have a loved one who is transitioning into adulthood or is an adult. Eric doesn’t talk about diagnosis because his approach is to focus on helping the loved one continue to develop, and that is an individualized process. Eric also wants to look at the social side of disability, and how to freely build relationships. What are the ordinary good things in life, and how can our loved one have more of these things? The earlier you start the better because in my case, if I start this while my son is 13, he’ll be in a better place when he’s say, 18, or 20, versus starting when he’s 18.

Eric also talks about developing and maintaining these freely given relationships. The earlier you can start this, the more relationship-capital you can get out of it, he stresses. I talked about how common it is for caregivers to beat themselves up for not doing enough earlier, but how we have to accept that we are doing the best we can as we have the information we need, and that everyone is in a different place with different resources and capabilities themselves. 

The Life Plan Coaching Program

Eric says that the best thing to do is download his free guide on his website. He offers two courses. The one he focuses on the most is the Life Plan Coaching Program, which is a 10- to 12-week online course that focuses on building a life plan that isn’t a ‘special needs’ life but an ‘ordinary life’ around six key areas, or life domains, that are really important to all of us that we all need to think about, even if it seems unrealistic at this time:

1. Capability – that independence piece
2. Relationships – developing and maintaining natural relationships
3. Contribution – building valued roles such as employment and contributing in ordinary community places
4. Creating Home – what would the best home look like that isn’t a group home and how would you feel living in that home
5. Support and Finance – what type of paid support and other support will your loved one need? how will your loved one manage money and wills, trusts, etc.
6. Awesomeness – all the other things we want including fun, adventure, romance, spirituality, culture, etc.

Eric then walks through areas of preparation as well such as our emotional readiness as family members. If Mama Bear isn’t ready, for instance, Eric explains, then the loved one won’t be ready. He also talks about learning about the ordinary possibilities. What are other people with disabilities doing? Where are they living? What are their jobs? What are their roles in the community? What are the relationships they have? How have they grown their capability/independence? It helps to see other examples of this even if their disabilities are different. It expands our thinking.

Eric shares with families that it’s important to always be taking small steps. Even if you only take one small step per week, that’s 52 steps in a year, and if you look back to where you are at the end of the year, you will notice the difference in both you and your loved one. Don’t skip over the importance of the small steps and celebrate them, Eric stresses.

The Independence Coaching Program

Eric uses the terms ‘independence’ and ‘capability’ interchangeably. He is careful with the word, ‘independence’ which can imply that you do everything on your own, and family’s think that won’t be for their loved one. Eric instead talks about helping our loved ones do more everyday things and having the motivation to do them, and that can be with some support. The Independence Coaching Program is around 6-7 weeks and focuses on step-by-step process to help their loved one grow their capability.

This course includes the inner work we need to do as family members to start to shift the decision-making or power dynamic in our relationship with our loved one to distribute the power more equally, and giving our loved one more agency. As they develop more agency, they’ll start making more decisions and be more intrinsically motivated to do things on their own. The courses have video lessons and an accompanying workbook. It comes along with three group coaching calls once per month as well. Eric gives you the tools, but you have to do the work yourself and implement it because nobody can do the work for you.

Examples of Small Steps

I asked Eric how I could start taking small steps with my son around preparing food for himself. Eric says it really depends on where your child is developmentally. He says it also depends on what skills they have in the kitchen. I mentioned that I’d also want to help them make healthy choices versus just eating something unhealthy that they like over and over again. Eric says he would start with something more simple such as breakfast or lunch before tackling a more complex meal like dinner. But even before that, he says, he would ask what you think your loved one would be interested in learning. 

Maybe they have to wait for us to do certain things and it’s frustrating, so it might benefit them to start it on their own. For instance, when Eric started out, his sister was interested in making her own breakfast or doing her own laundry. It’s a win-win for us if our loved ones learn these skills because they become more independent and we don’t have to do it. First, start with asking them to enter in to a conversation. Ask if you could find some solutions together. It would be really helpful if they could help out and would they be open with that versus telling them they will be doing this new task, Eric says. 

You can ask if there’s one thing they can think of helping out with. This will increase their motivation. They might say they don’t know if they’re not used to having agency. You can offer a few ideas and have them pick one. You can say that you know they get frustrated waiting around for breakfast and ask if they’d like to learn to get their own breakfast or that they might want to have their clothes washed sooner and would they like to learn how to do the laundry? Let them pick.

Tackling our Extreme Worry

I asked Eric how we begin to overcome excessive worrying about our loved one’s safety. I’m worried about the stranger that comes to the door, or letting someone in that they shouldn’t, or an issue with toileting and personal hygiene. Eric says it’s important to get specific about the worry, then you can safeguard the vulnerability that the loved one has. There are developmental safeguards (i.e., what can our loved one learn to protect themselves in that situation, such as training around door safety like not letting anybody in unless you see them and recognize their voice), and protectionary safeguards (i.e., what other people can be put in place to keep our loved one safe, or technologically, externally).

For Eric’s sister, there’s the step of opening the front door of her building from her apartment, then seeing who’s there when she arrives at her door through a screen that allows her to see who’s there. That device also takes a photo of who’s at the door. You can also then think about the people such as your loved one’s neighbours who keep an eye on people coming and going, for instance. Eric says that you also want to find a balance between your loved one’s privacy and their safety. Eric always encourages families to talk about these things with their loved ones rather than just tracking them. Respect your loved one.

Thank you to Eric Goll for telling us about the amazing courses and videos he provides. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.

Until next time, here’s to choosing play and experiencing joy everyday!