The theme today is student voices, student choices. Whether you’re a student with disabilities or a loved one, you’ve been preparing for and practicing how to use your voices and exercise your choices in the educational setting for years. Now, it’s time to bring all of it to the next part of your journey; adulthood.
It’s a whole new world you’re entering, and I get it – it’s scary and full of unknowns. Right now in particular, services are not meeting needs. We keep hearing about the proverbial “cliff” once school is done. I can’t stand that analogy, but like I said, I get it. My son Nicky transitioned into adulthood nearly 12 years ago.
There’s a whole lot that can be discussed around this topic of voice and choice for adults with disabilities, but today I want to focus on just a couple items that are among what I believe are the most important, that I talk about a LOT with caregivers, educators and professional support providers all over the country.
The first topic I want to start off with is an important key ingredient to the way that we approach building lives for the people that we love: intention.
You and I have all sorts of freedoms, don’t we? I can jump in my car anytime and I can go and find things to do that I enjoy. I can reject things that I don’t enjoy and decide that I don’t want to do them. I can explore new things, new experiences, anytime in any way I want to.
But for those that we love, for people with disabilities, that’s not always possible for a number of reasons. I won’t get into all of them, I think we can all make that list. The key to all of it is that we need to approach supporting voice and choice with intention. What does that mean? It simply means we need to plan. Those things we take for granted aren’t always do-able for those we love. They often can’t just jump in the car, go meet new people, go book a flight and take off. Whether it’s building relationships, finding community opportunities or building new skills, they need to do far more planning than you or I might need. People we love may need support every step of the way. Some may need help with just a few things, and some may need no help at all once they get through the door, but may need help opening the door.
Now is the time to begin becoming more aware of the fact that intention is part of the formula for success. Unfortunately, we live in a world where we can’t just say to our loved one that the things they need to succeed can be found wherever they go. I wish it weren’t true, but it is. We need to make certain our loved ones have the strategies and tools to be ready to use their voices.
Too often, there are challenges and limitations in the spaces where people with disabilities try to go. Some of it is structural: there’s no ramps into the building. Some of it is societal: we are all conditioned to believe that people with disabilities should be confined to their own spaces because they don’t belong or can’t fit into where the rest of us go or have nothing to contribute. And some of it is internal: you and your loved ones have lived up until now being protected as students and protective as loved ones.
But it’s time to make changes in how we each individually support voice and choice; starting internally.
This is the next topic we need to discuss.
Now, what do I mean by “internal?” I’m talking about both literally and figuratively. Literally, I mean inside your home. Many people entering adulthood are staying in the family home – not just people with disabilities, all sorts of young adults can’t afford to live on their own these days. This has created a level playing field between people with disabilities and their non-disabled peers: we all have to shift our thinking when suddenly our children are adults in the home and parents are trying to figure out how to treat them like adults. That’s a battle that can be tough for everyone.
But the other internal battle is the figurative one: our hearts. That space where we hold our biggest dreams and our deepest fears, where we hide our traumas and our experiences that have shaped us, and all the other drivers that lead us to overprotect and underprepare, to avoid change and do everything we can to eliminate challenges for ourselves or our loved ones.
I do an entire workshop on this subject in particular, and it’s my most popular subject ever of all the topics I tackle. It’s got a pretty provocative title: it’s called “Stop It! Caregiver Behaviors that Impede Progress.” I do not have time to do it all today, so I’m going to give you the bottom line: preparing our loved ones for life beyond us is the greatest, most selfless gift we can give them. It’s also the hardest thing we will ever do as caregivers.
What is it that our loved ones need to be prepared for? Usually, when we go to conferences or workshops on transition, the topics are things like housing, benefits, services, guardianship, financial planning, and so on. Not one of those topics addresses the skill sets people need to prepare to navigate adulthood in the REAL world. So as caregivers we are taking care of all of those other topics; but as we do we are often ignoring the equally important skill building they need to steward their choices and their voices.
We need to do better in prioritizing skill sets that build independence and strengthen voices. We love them, we want to protect them, we believe we can and nobody else can. It’s easy to fill out a housing application; not so easy to step back and allow them to freely explore, learn, and maybe even fall.
A while back I conducted a survey with a group of adult service providers. I asked them what the characteristics of a well-prepared person going into any support setting (like a group home or day program, employment, etc). They told me the following skill sets are very important:
- Flexibility
- Willingness to try new things
- Functional communication
- Social Skills
- Problem-solving skills
- The ability to ask for help
- The ability to follow directions
- Good Personal care/hygiene
There are a couple of things I would add to this list that speak to today’s theme of choice and voice. They are:
- Ability to choose from different options
- Ability to say no
- Ability to say “please listen to me” or “I need to speak now” or something as simple as “my turn.”
I often talk about this list as a great starting point as we begin a discussion of strategy with intention. Here’s a strategy I bring to you now:
Take an inventory of all the things you are not doing yet (if you are a self-advocate) or are doing for your loved one (if you are a caregiver). Make a list and in separate columns mark yes or no to the following questions:
- Can my loved one learn to do this themselves, in whole or in part?
- What do they need to achieve this? It could be visuals or other assistive technology, new language to learn, an activity schedule to follow, a YouTube video to watch.
- Who could help with the skill building? It could be a clinician or a friend or a home support provider or a family member
This simple exercise can support conversations about how to use the remainder of your time in the educational setting to maximize preparation and give you things you can take forward when school is done.
Next strategy: build community. What’s the backbone of success in this area? Relationships. Ah, now we’re really talking tough stuff. Because I’m not talking about the comfy relationships we already have; family, friends, teachers, places where we know we are welcome and where we are known. Where everybody knows your name and they’re always glad you came.
When those of us without the challenges of disability become adults, one of the first things we want and need to do is find our peeps – remember earlier when I talked about intention and made the contrast between what I can easily go do by myself but those we love often cannot? I’ll use myself as an example again. I went to college and found friends, including one really good friend who became my husband. I dove into the autism community after my son was diagnosed, and it was there that I found my place. It has been those relationships that have provided me with the strength and experiences and skills that sustained me through my son’s education, psychiatric hospitalizations, residential placements, and his trauma following abuse by day program caregivers. I found my peeps, I built relationships with them, I built trust and mutual dependence and deeply committed friendships with them. They fulfill me, heart and soul.
If I had not had the freedom and the skills to build my community, to find my peeps, I would not be here today. The same goes for our loved ones – the same goes for all of us! It’s a known human condition: the need for relationships and connection. Do not dismiss this for those you love by not including it in your intentional planning for the future.
To build community, you need explore new places and welcome the voices of others into the life of the people we love. You need to make yourself vulnerable to hearing opinions and ideas about your loved one. Here we go again with another tough topic!
How do we shift our thinking about welcoming others into intentional planning? It’s another strategy. It’s all in the ask. Rather than asking others what they think about your loved one and what they should be doing, ask those who know your loved one well and have spent time with them when has my loved one been their happiest, most calm and adjusted, most comfortable? Ask them to tell you stories, share memories; ask them not to tell you why they think your loved one was happy, just tell the story.
Then LISTEN.
Here’s an example I love to tell; true story. One young man at a person-centered plan years ago told me his dream was to live under the sea in a pineapple with Spongebob Squarepants. I held the space in that moment with his Circle of Support surrounding him and asked him to tell me more. Turned out, he wanted to live in an apartment with one roommate and work at a fast food restaurant. It was talking about Spongebob that he was able to describe what he really wanted.
The lesson? Like I said, LISTEN. And LISTEN DEEPLY. This young man was using his voice; we need to remember to hear it.
So let’s get back to that inventory. Now you’ve got a list of experiences and settings that you already know has elements of joy for your loved one. Start there. Think of similar adult-ish settings where that same kind of joy can be had. Have they always enjoyed the outdoors? Then where are the hiking or camping groups? Have they always loved to cook? Then where are the classes or who are the friends who they can cook with?
My son Nicky is now 31 years old, and he lives with a non-family caregiver. He has profound autism and will never live alone. His caregiver, Ben, has lived with him for 7 years, known him for 12, and Ben knows my son now better than I do. Ben has introduced my son to his family, his friends, people he knows in his community. I did not interfere, even though it took all my strength and I battled sadness, jealousy and fear – sometimes I still do.
Nicky is non-verbal but he uses his voice with Ben in ways even I don’t always understand; but those in his community do. Ben gives Nicky choice as often as he can, and because of their mutual friendship and trust, Nicky knows he has choices and feels confident to make them. Those in their community model Ben’s attitude and treat Nicky like an adult, with respect and dignity. I’m not so sure I could have built that same community myself, if I had been blocking opportunities in the name of protecting him. The truth is, I believe I’d do things differently to protect myself.
Nicky’s community began to build when I looked internally and realized I could not be Nicky’s everything, nor should I be. That if I truly want my son to have a life of joy and dignity, of choice and the opportunity to use his voice, I needed to let him build a community that didn’t place me in the center, because I would just be in the way. I needed to build with intention, then stand back and let the relationships, the community, build authentically.
Now, wherever my son goes in the greater Worcester area with Ben, everybody knows his name.
Let’s get back to what today’s theme is: choices and voices. We’ve tackled the strategy and the shift in thinking that is required to honor their voice. I have a story that illustrates empowering choice, but I’d like to insert another important lesson under the heading of preparing our loved one for their next journey. Once again, it’s about you – the caregivers and loved ones. Here it is:
The next people in your loved one’s life are not going to do things exactly the way you do!
I know a young woman who wanted to bleach her hair. Her parents had a fit; but her house manager at her group home talked through the pros and cons, described what she would have to do, and she chose to go ahead and give it a try. I’m not sure how it turned out, but the lesson here is about choice. I love that this woman used her voice and then made the choice after being given all the information. I love that the group home supported her! This story illustrates what truly standing up for choice and voice means. It’s not always easy, it’s not always intuitive, it doesn’t always go perfectly, and it may not be the choice a parent might make, but we must honor it if we can, no matter how hard it might be to see your daughter with bottle-bleached hair…but it’s not about us.
The lesson here for caregivers? Guide, don’t steer.
There are consequences to the choices we make; you don’t have to take my word for that. Much of my experience comes from working with hundreds of families doing person-centered planning over the past 10 years, but I’ve also leaned on the expertise of my professional mentors and on research in the field. Here are some quotes from my research you might find interesting, as I did:
When parents overindulge or over protect the special needs child, they take away the experiences which enable the child to be successful in life. The consequences of overprotection include lowered self esteem, feeling less capable and reduced opportunity for growth…this treatment can shape a person’s attitude towards his/her disability and limit what they are willing to do regardless of what they are able to do.
For students with disabilities entering college, studies show consistently that social skill sets and personal flexibility to changing environments and academic pressure are all equal indicators of success; some reports have said that the reason students drop out has more to do with social skills and adaptability to independence than to academics.
Adulting can be really hard for all of us; for those we love, I have seen the challenges seem insurmountable at first but gradually become rewards when we steward voice, choice, and above all – hearts.
Today we have explored the idea of approaching the future with intention. We tackled the idea that we need to begin a shift in thinking about our loved ones as adults, by looking internally and recognizing the things that may be driving us to hold back from letting our loved ones participate in their own futures. We talked about the skills that are needed for dignified lives that are just as important as finding housing. We talked strategy: building an inventory of skills that our loved ones need to build and those we as caregivers also need to work on, including finding our own strength to step back and rethink how we support. Are we supporting joyful lives beyond us, or holding on too tight?
I realize all this I’ve presented today has not all been unicorns and rainbows, so let me take you back to one more story about my son Nicky. When Nicky transitioned into his adult residential setting, within months he had experienced more things, met more people, and had more fun than my husband and I had been able to provide for years on our own. His most severe behaviors went down by 70% over a 10-year baseline in the first 3 months.
That wasn’t a miracle. That was just Nicky, being given his voice. Being allowed to make choices, being respected and being given expectations in his home as an equal adult who just needed some support and people who believed fully in his capacity. Nicky now lives an extraordinary life, and if my husband and I go tomorrow, he will be just fine.
I can’t promise you a smooth transition experience. Each one is different and unique and terrifying and special and all the feels. But I can promise you that if you embrace the ideas of intention, of listening and honoring the voices, of opening doors to opportunities for choices, and (especially for those of us who are caregivers); of taking baby steps – then bigger steps – than leaps – to foster skills and relationships that can sustain beyond us, whether “beyond us” means the first day of college or the last day of our lives – your adult will have a more fulfilled life of dignity and joy.
You are going to find that, whether you are a student or a loved one stepping into adulthood, the possibilities are endless. I hope you find information and inspiration today and remember that you’re not alone.