I am currently reading a book called Falling Upward by Richard Rohr. Doesn’t have much to do with what we’re talking about, but the book is about our journeys in the second half of our lives. He has one quote that just shouted out to me when I read it, in particular, it brought me to think about today. He said “you cannot use first journey tools for your second journey.”
You are embarking on your second journey with your loved one. As such, you need new tools. You’ll need even another set of tools later on in your loved one’s life; right now you need the tools to get through your transition journey with your loved one.
I cannot stand here today and give you solutions to the challenges you are facing, even though I wish I could. Dr. Stephen Shore gave us the phrase “if you meet one person with autism, you’ve met one person with autism.” The same applies to transition experiences; each one is unique and with have its own unique set of challenges as well as gifts.
But it’s been 11 years for me, which makes me your your elder, and my experiences, just like my generation of peers, have made me a wise old woman. And wisdom has taught me that there are some universal tools we all need; tools that can support and guide us and give us the strength we need to get through this time in our lives.
I brought my toolbox along with me today. Let’s open it up and see what we find.
Self compassion
I like this term much better than self care, or even self-love. Sometimes self-care and self love just those terms can be overwhelming. So let’s start with some self compassion. Self compassion can look like a lot of different things. It can look like lessening the kind of pressure that we put on ourselves, to be or achieve or learn something that we simply cannot. Self compassion can be the traditional ideas of taking some time off, getting massages, going to yoga. It can look like using dry shampoo and extra deodorant instead of a shower, and laughing about it. But it can also look like spending an hour with a friend on the phone, deciding not to go to our 14th transition conference. It can look like saying “no”: no is a complete sentence, by the way. It can look like texting the family in January that you will be happy to host a gathering on one of the holidays but your family will be staying home for all holidays this year and people are welcome to come visit you. No apologies.
Also under the heading of self-compassion: get to know yourself again as a person other than the caregiver to your loved one. You have spent somewhere around 2 decades at this point being the parent or caregiver, and that’s been your identity hasn’t it? That’s to be expected and indeed, necessary for our children during childhood. But holding onto that identity is a dangerous thing for a lot of reasons, and one of those reasons is that it has a direct effect on the person you’ve been caring for because it can stop us from promoting independence in our loved ones. The subconscious fear that we may not have an identity beyond that of caregiver might be stopping us from taking the next step in supporting their progress and preparedness for life as an adult. Then, nobody benefits. Find one thing that is outside your caregiver identity and give it some space and some love.
We all practice compassion in our every day lives as caregivers. We are compassionate toward the ones we are caring for, we are compassionate toward others on the similar journey. So why are we the last ones to do it for ourselves?
Stay in your lane.
In the book, Women Who Run with the Wolves, the author talks about how important it is not to run around trying to organize and pick up pieces of things happening around you that have nothing to do with you, while you’re in the midst of change. In those times, and you’re in one right now by the way, it is important to remain focused on the things you have control over and must attend to.
Do not take on external burdens or universal burdens or giant big picture topics right now. There’s a lot going on in the human service world that needs our voices, including the workforce crisis, housing crises, budget needs that are unmet, and with each of these there is a need for advocacy. One of the easiest things you can do is sign up for the legislative alerts from the Arc. They make it easy to participate with pre-written letters you can send and online events you can attend. But if you’re facing a serious road block in your transition experience, don’t decide you have to change the laws in the next 2 weeks. Your time to stand up and be a voice for the community will come.
You need to stay focused right now. There is one person needs you most. It’s not who you think it is. It’s not somebody else. It’s you. It’s your own soul that needs you most. That needs you to stay strong and love itself and nurture itself and forgive itself. That way you can be whole for others.
Take what you need and leave the rest.
I remember the years leading up to Nicky approaching adulthood and going to every single conference, workshop, training, and support group I could go to. I remember having a giant box of paper – crap I collected at each one, about everything I needed to know. I remember one day not long after Nicky turned 22 that I came across the box and realized that I had not looked at 99 percent of it; I also remember coming home from each event and feeling more overwhelmed than the last one. So much had nothing to do with Nicky’s journey; pre-vocational and employment opportunities, getting your loved one ready for college, finding housemates and volunteering; and so it was more depressing than anything because it just kept reminding me of how profoundly disabled my guy is. So choose wisely when deciding to attend an event, and seek those resources that are meaningful to your journey. Leave the rest.
Patience and practicality.
You don’t have to have all the answers and everything your loved one needs for the rest of their lives ready to go on their 22nd birthday. This is something I see families believe all the time. Let’s talk about our own lives for a minute. How many of us still live in the exact, same place that you did coming right out of high school? How many of us still have all the exact same friends, how many of us have never had any experiences beyond our high school experience? I’d be willing to bet the answer is none of us. None of us have lives that look exactly the way they say they did at 22. So why do we think that we have to set up our loved ones entire life before or at 22? It doesn’t make any sense. You’ll need what you need to get things started, but don’t think you need the next several decades planned out.
Lean on your elders.
We know what you’re going through, even if we don’t know you story. We have been there; you don’t need to say a word. We also know a lot of people; we can help you make connections. I’ve got good news for you; you’re not special. You don’t need to invent the wheel, you just need to jump into the wagon.
Very recently a good friend told me a story that I had forgotten, about one of the first times she and I had a conversation (we’re both old now). She said to me “I’ll never forget the time I asked you how you accomplished everything you did when you transitioned Nicky. You said “I went to every meeting I could, every event that I could, and I shook the hand of every person I could. I followed up with them – called them, emailed them, texted them, stalked them until we either became friends or I got what I needed for my son.”
That’s exactly what happened. When I first arrived with my husband, my son and my daughter to Massachusetts in 1999, I immediately went to the Autism Resource Center of Central Massachusetts. It was there that I met Sue Loring and many others who I quickly realized would become my mentors and my lifeline in every way.
I still rely on my elders, although some of them are getting pretty elderly (is Sue here? No? If you see her tell her I said that).
Don’t try to be an elder until it’s your time, by the way – and it is not your time. When it is, though, I expect you to impart your own wisdom to the young, irritating parents who come up behind you.
Lean on your community.
Raise your hand if you think you are alone on this journey. Ok, put your damn hands down! I’ve got news for you. You have more friends than you could ever hope for if you are willing to make yourself vulnerable and open yourself up to the possibility that here in this room you are surrounded by friends.
I’m a bit of an extrovert, so this comes easily to me. I know it doesn’t for everyone, but you need to get over it. There is nothing like the feeling you get from knowing you are not alone and that you belong to a community. And you do. You might have to but in some work, you might need a nudge to get started, so…
I’m leaving you with an assignment that you need to complete today. I want you to walk over to someone you’ve never met at this conference, and I want you to shake your hand and introduce yourself. Pluck up your courage. I want you to talk to each other. Share your story, tell somebody about what you’ve learned today maybe it’s later in the end of the day and you’ve been to a few workshops say “hey, did you go to this workshop” or “hi, I saw you at this workshop, what do you think of it?” Or, I’ve got an even better idea. Go and introduce to yourself to someone that you’ve never met before, and tell them which of Cheryl‘s tools resonated most with you and why. And if you ever see them again, that’s absolutely fine. You might see them again you might end up bringing them into your circle. You don’t know until you try, and you won’t try unless you’re assigned. So I’m assigning you. Have a wonderful day filled with information and inspiration. And remember you’re not alone.
Thank you so much.