Author: Lynn Vigo, MSW, LICSW

Parallel Paths in Adult Transition

As a veteran parent of a child with autism, I thought I was prepared to handle just about anything as we approached her eighteenth birthday.

 

 

I had years of experience under my belt, locating, navigating, and accessing services for her and many others in my work.

I had my adult transition checklist: Apply for guardianship. Check. Apply for SSI. Check. Set up special needs trust account. Check. Check in with DDA case manager. Check. Look into residential housing options. Check. Everything was going relatively smoothly, which means I found my way through the mazes with a little more confidence and a little less stress than in years past. I had hit my stride, strutting my parental best-self, and moving forward.

And then the unexpected happened.

I was standing before a court commissioner at my daughter’s guardianship hearing. She was talking but my focus kept waxing and waning as I began to experience an out-of-body sensation. I was physically present but my brain felt as if it were up on the ceiling observing from above.

She was praising the fine job I’d done caring for Carrie the past 18 years. “Well, of course!” I thought. “I’m her mother!” Then she sternly looked at me and told me that from this day forward, in the eyes of the law, I was no longer her mother. I was her legal guardian – held accountable to the court. There would be records to keep and reports to file. My mind was playing tricks on me again. Of course I would be accountable. I’m her mother!

On my way back to the car, I tripped, ripping my pants and badly scraping my knee. I sat in the car, knee stinging and mind numb, and tried to make sense of what had just occurred. Why was I so unnerved?

Was it the finality of missed milestones or comparing her future as an adult to peers or her brother? No. I’ve never been one to compare her to others. Was I afraid I wouldn’t live up to the court’s expectations of me as her guardian? Nope. Not that.

This is what I came to: Her entire life, I’ve been her protector, her advocate, her teacher, her therapist, her supporter … her mother

And then one morning in court, I was not.

Nothing could have prepared me for that. This was the beginning of a shift that I realized was not just for her but for me as well.

Adult transition has proved to be as challenging as getting her diagnosis and initiating all the supports and services she has needed. It’s a lot of work and I’m 20 sleep-deprived years older than I was then.

Just as I didn’t want her diagnosis 18 years ago and would have liked to pretend it wasn’t happening, I don’t want to transition from her trusted pediatric providers – but I can’t pretend.

So, dear parents and pediatric providers, here’s my message to you as you approach adult transition for your child, your patient.

  • Don’t put off the inevitable until the last minute. Find out what the transition policy is for each of your child’s providers. It may not be the same for each department or specialty.
  • Perhaps you don’t know what resources there are for young adults in each specialty. How about exploring this together?
  • Dear provider, maybe you don’t feel it’s your job to have this talk with parents – but if not you, then who? Who better than the person we’ve trusted with our child for almost their entire life?
  • It’s likely that we’re both feeling anxious about this and wish we didn’t have to part ways. We’ve been through a lot together, problem-solving many challenges, and this is no different.
  • Partner together to make this less stressful and a better outcome for all.

 

 

 

 

 

Mindful Monday – Do Overs

Have you ever thought back to a difficult time in your life and wished you could go back and do it over? That’s likely because, as Dr. Rick Hanson tells us, our brains tend to be like Velcro for the negative and like Teflon for the positive.

How we remember an experience (and how we perceive an unfolding experience) has much to do with what we choose to pay attention to. 

Before you say yes to that do-over, try this exercise:

Think of one of the biggest challenges you’ve had in your life, one that was so difficult you thought you’d never get through it. Now ask yourself this: Did anything good come of it? Did I learn anything about myself or life? Am I stronger, wiser, more resilient? Did this challenge lead in a direction I might not have otherwise taken? 

In paying attention to possible positive aspects of the experience, you are shifting your attention, reframing the experience. That doesn’t mean ignoring the difficulty or pain. It simply means broadening your view to include any positives that may have come of it. Keeping in mind that adversity is our common humanity, doing this helps keep perspective.

Try broadening your view to current challenges to include any possible positives, keeping in mind those past experiences.

The glass is, after all, both half-full AND half-empty. 

 

Mindful Monday – Cultivating Humility

What does humility have to do with mindfulness? In a word – acceptance. In this case, acceptance that we’re all human with our foibles and limitations. No one is perfect.

 

Being humble doesn’t mean being meek or weak. We have all met someone who demonstrates a humble confidence, taking ownership of mistakes and sharing successes.  And we’ve all met someone who demonstrates an insecure arrogance, blaming others for mistakes and taking credit for successes. Whom would you prefer to work with? Live with? Be?

Here are a few tips from Donald Altman in one minute mindfulness to help think about humility:

Reflect on:

  • What mistakes have I made and what lessons in humility do they hold?
  • How can I demonstrate to others that we’re all in this together?
  • How can I remind myself that humility is a strength?

 

 

Mindful Monday – Saying Thanks

When I had my first child, my mom signed me up for a subscription to Reader’s Digest, telling me that it’d be a long time before I’d have time to read anything longer than what I’d find there.

She was so right about that! Twenty-two years later, she still gifts me this subscription and I’m finding lots of good mindfulness material there to share with you.

In the October 2016 edition, Lisa Fields writes The Goodness of Gratitude.  In it, she tells us that we are living increasingly in a “me-focused world” of social media where saying thanks may be a dying practice. Say it ain’t so!

Take a moment to recall how it feels when someone does something kind for you. It may be as simple as holding open a door for you as you both arrive at the same time. Now take a moment to recall the feeling you get when you express gratitude for both the small and more significant kindnesses.

So whether it’s a quick but heartfelt thanks to the stranger on the bus or a surprise thank-you post-it note left on the mirror for your loved one, set an intention today to say thanks to at least one person. Then do it again tomorrow and the next day and the next.

Mindful Monday – First Taste of the Day

 

Here’s a mindfulness exercise from Donald Altman in One Minute Mindfulness:

 

 

 

Think about the first thing you tasted this morning, perhaps a sip of coffee or minty toothpaste or cereal with milk. What, if anything, do you remember about it? If your answer is “nothing”, you’re in good company. As rushed as we are in the morning, it’s easy to go from one autopilot moment to the next without paying attention. Set an intention for tomorrow morning to pay attention to that first taste. Sip and savor instead of slurp and swig! This small step will help you as you develop a mindset of paying attention to what’s happening in the moment.