Being a part of the first inaugural #profoundautismsummit will always be one of my most cherished experiences. What an honor! Please follow the #ProfoundAutismAlliance at www.profoundautism.org.
WE WILL NO LONGER ALLOW THE VOICES OF THOSE LIVING WITH PROFOUND AUTISM GO UNHEARD.
31 years with my profoundly autistic son, 10 years doing person-centered planning with over 300 families. And I quit. I knew I needed to find a way to reach more families and caregivers than I could doing one-on-one planning. I was seeing things happening over and over again that worried me. They basically fall into 2 categories of behaviors by parents and caregivers: under-preparation and over-protection.
But I get why they are happening. Not only do I understand but I also used to be among the best overprotective moms I know.
It was during Covid that one evening I did a Facebook live event.
I had already begun establishing a library of workshops and trainings on topics around planning and caregiving, loneliness and Circles of Support, etc in the few years leading up to the lockdown, and I was working to keep the momentum on those topics in the absence of being in-person. That night I had just finished a person-centered planning session and I was frustrated because once again the family was resisting the idea of helping their loved one be less dependent on them or bringing others in to begin helping him build new relationships. I did a bit of venting on Facebook live.
The very next day I had 3 provider representatives ask me to build a talk around this. That was when my most popular of my workshops was born. It’s called Stop It! Caregivers behaviors that can impede progress. It’s definitely a provocative title. It’s not just the title: this is definitely a tough topic to tackle. We don’t have time to go through the entire workshop today, which is hard for me because without the full discussion the message can be lost. We talk about what drives us to overprotect and underprepare our loved ones; there are many reasons but right at the top is that fear WE ALL KNOW: what is going to happen when we are no longer able to care for our loved ones? So far, living forever has not been a very good strategy.
So when I present this workshop I try to reframe these ideas by bringing forward a new perspective : helping our loved one be the best version of themselves when it’s time for the next part of their journey (life without us) is the last and most precious and most selfless gift we can give them.
We talk about how hard that is: It takes hard work and it takes vulnerability and it takes strength- and I’m referring to US. During the workshop we also talk about how this concept is really as normal as it gets, and it further helps to frame our perspective. Isn’t this what we do for our neurotypical loved ones? Helping them be ready for the world. Giving them the skills they need to lead a good life when we are no longer there every day. The idea is the same for our loved ones, it just looks a lot different and it takes a lot more thoughtful work for everyone. It takes more people and more planning; it doesn’t take a village, it takes a metropolis.
But we approach it like it is a tragedy. We think that no one could or will ever love our child. That’s tragic to me because it suggests they’re not capable of having meaningful relationships beyond us.
In my workshop, again under the heading of reframing our perspective, we also about possibility – the idea that maybe, just maybe, our loved ones can thrive. My son spent over a year in a psychiatric hospital unit for children with developmental disabilities, then 5 years in a hospital-based institution here in Massachusetts, where, when transition age neared, the team declared that he would never be anything but a burden to the system and a danger to the public. At 20 we moved him into a hybrid shared living situation with 1 caregiver and a group of staff who worked part time supporting them both. 3 months after Nicky left that horrible institution, his behavior data showed a 70 percent decrease from a 6 year baseline. That was not a miracle; that was not my son suddenly getting better. That was my son moving into a place where he was respected, heard, valued, and given autonomy as well as responsibility so that, once again like all of us, he felt valued and appreciated for the contributions he could make.
I tell this story a lot, and there are many other stories of things my son has done that if he were living with me, I would never have given him the space to do; I would never have believed he could do. I stopped saying “no, he’ll never be able to do that” a long time ago, because I am ALWAYS wrong.
I’ve said this today already and I’ve said it many times: those who take care of Nicky love him. Deeply. And 13 years after he began his adult journey, they know him better than I do. Thank God.
But this is about us – the caregivers. Now is the time to begin recognizing in ourselves how we can make that shift in perspective, embrace possibility, be vulnerable, invite others in to help, and strengthen ourselves as we strengthen our loved ones.
As I do in all of my workshops, I like to provide tools and practical strategies to get started. So I brought one today to share. It’s a way to get what we’ve talked about organized in our heads so we can begin taking action.
It’s an inventory of sorts. Take a piece of paper or open up a spreadsheet on your computer. Now, in your head go through a typical day with your loved one starting with the moment you begin the morning routine until the moment they “might” go to sleep. On your spreadsheet you’ll need 7 columns. You’re going to have to be specific as possible. Here are the titles of each column:
1. Task Description: Name and describe the task or activity: example, my child has to get dressed for the day.
2. My current support level: using the same example, I get his clothes out and put them on the bed. I help him put his clothes on.
3. Could my loved one be more independent with this task? Example: yes, he could get his own clothes out. He could put everything on but he may put on shorts for the snow so he will need a check-in.
4. What are the challenges and what would that look like? Example: my son makes a mess and destroys clothes in his dresser, so the caregiver now provides one outfit in his dresser per day. It wasn’t that he couldn’t get dressed, it was that he got too anxious over too many choices.
5. What do I need to get there? Example: Find a place to hide his clothes, put an outfit in while he is getting ready for bed or eating dinner. Maybe i need a clinician to observe and create a task analysis or activity schedule. Maybe an FBA. Maybe i need to develop visuals.
6. And 7. Who do I need to help and how can they help me? Maybe a BCBA or behavior specialist; maybe an OT. Then, to provide the maximum opportunity for practice and flexibility, I need others in his life that I can recruit to help practice new skills. For example, the person who learns to make her own lunch – maybe she can make sandwiches for someone else, or learn from someone else (a neighbor, Grandma).
NEXT
- Prepare the tools and things you identified you need.
- Reach out to the who’s on your list and do the ask.
- Make plans and put them into action!
You are now on your way to organizing your own thoughts and gaining a greater understanding of the possibilities while recognizing the challenges. Lastly, reach out to others for support and understanding, your cheerleaders, because we are a huge community who will embrace you.
I have been working for years now on those messages I feel are not being discussed enough. They are tough to discuss, tough to hear, and really tough to teach because I’m talking to my fellow parents and so I’m living all the same fears, traumas, distrust, inability to be vulnerable and all the other things that drive me to protect my son.
My hope for the time I have today is that the seeds have been planted to get you thinking about the future. I KNOW it’s hard. I KNOW it’s terrifying. But I believe that if we can face our fears and act now, when the time comes to pass along our loved one to the next caregivers, time everyone benefits: You will know you’ve done all you can, and most importantly, your loved one will be better prepared , safer and ready to lead a beautiful life. That’s what I pray for for Nicky and for all of you.