Learning to Let Go

Original Story published on Building Community Blog – December 30, 2018 / By: LZUEGEL

A ruddy beard is my best reminder….

Your teen, grandchild, niece, nephew or friend is turning 18.  This milestone marks a shift as the teen becomes an adult in the eyes of the law and community, and the role of parents changes from provider to ‘coach’.

Jeffrey at GGFor an 18-year-old with special needs and his/her parents, this milestone presents a fork in the road.  They have to make a choice: that individual can enter adulthood on a path similar to a neurotypical teen’s, or parents can establish a legal arrangement that adjusts their teen’s rights to ensure safety and well-being of the individual and the community.

The traditional legal arrangement for a special needs adult in California is a limited conservatorship in which a judge assigns a responsible person (the limited conservator) specific rights to care for an individual with developmental disabilities (the conservatee).  Each limited conservatorship is customized. During the courtroom proceeding, the judge gives the limited conservator power to do things the conservatee cannot do without help, and the scope of these powers is different from case to case.  The limited conservators are expected to involve the conservatee in any decision-making needed.

Disabled rights advocacy groups across the country are challenging this traditional approach.  They focus on the abilities not the limitations of the individuals, and on protecting rights instead of establishing constraints.  These advocacy groups have offered multiple approaches, with a common thread of adults being  supported in their decision-making.  One of these options is establishing a healthcare power of attorney (POA) for a loved one with developmental disabilities.

In July this year, our 18-year-old son, Jeffrey, the bearded young man in the photo above, signed his plain language power of attorney*, in front of his speech pathologist, Amy, her colleague, Mila, and my husband, Jim.  My agentsAmy had led the team over the past year in ensuring Jeffrey understood the concepts of ‘agent’ and ‘health care choices’.   She used a  personalized story-book with photos of Jeffrey and his health care support team to facilitate the learning process. We worked with our estate planning attorney to review and refine the POA and ensure it met legal requirements and our family’s needs.   This POA has enabled Jeffrey to continue much needed therapies and has allowed Jim and me to remain involved in his care.  Just this week, I was able to go to our Rite Aid and request medication records, which were only available to me because I had Jeffrey’s POA in hand.

In many ways, we are afforded the same abilities as if we had set up a limited conservatorship for healthcare for Jeffrey.  Practicallyspeaking, this document has kept information flowing and care delivery going, but it has done even more for Jeffrey’s well-being.

The POA, with the focus on Jeffrey giving my husband and me rights, has created a vital frame which overlays how we partner with Jeffrey in his interactions with the world.  Emotionally speaking, I think this would be different from the situation of my being granted those rights by a court… rights that would be taken away from Jeffrey and given to me through  limited conservatorship.

But there is a crack in this story….all the while my husband and I have been working on researching and establishing this POA that respects Jeffrey’s abilities, in the background, we have had two grueling years addressing Jeffrey’s behaviors associated with autism and his developmental delays.  Jeffrey has shown immense growth in his social capabilities (he talks about his friends by name), his comprehension (now at about an 8-year-old level) and his speech (in phrases of 3-5 words).  He has developed an endearing sense of humor and a kind heart,  yet his periodic behaviors have become more challenging and require vigilance for his safety and everyone else’s.

How do you make sense of the flexibility and implied freedom a POA provides when your son is going through a period of aggression and when optimism for a better future might even be unwise?

Here’s how we have made this work:

#1 – Ensure Jeffrey is at the table.  This is where it starts.  Whether it’s planning our weekend or deciding on medication changes, we must involve Jeffrey.  This is easy to forget, so we have to keep ourselves honest and remember to check in with him.  This is about his feeling of independence, and we need to think about it globally – not just the small choices like what he wants for lunch.  Instead, for him to get that sense of self-worth and feeling of calm, he must feel in control of the biggest picture he can handle.

#2 – Ease ourselves and the team out of their comfort zone.  We instinctively feel we know how much Jeffrey can handle in making decisions, and we go about our daily routines with him with that in mind.  But we have to pause and stretch – let’s raise the bar to something just a bit bigger  than our instinct tells us.  For example, when we’re at the doctor’s office, ask Jeffrey how the medicine makes him feel.   Ask him how things are going at school.  Listen to what’s on his mind.  Yes, it’s hard to understand and make sense of, but often it does make sense and tells us where he is at.

#3 – Let go frequently for Jeffrey to make the small choices.  And this is where the beard comes in.  Ever since Jim decided to stop shaving Jeffrey earlier this year, I’ve been waiting for the day when we can shave off the beard and get my sweet Jeffrey’s face back to ‘normal’.  I think there’s a tug in me to find my ‘boy’ and let the world know he’s not grown up yet.  And there have been at least three times recently when I’m thinking…this is the week to shave.  Then, I remember, ask Jeffrey.

And while I may be a Pollyanna, I remain constant that we can weather this storm with Jeffrey and his marvelous team.  He is 19, after all, and this is a pivotal age for any young man.  Even neurotypical adolescents have at least several years to go before their decision-making and impulse-control capabilities are fully developed.

So next time you see a 6-foot, ruddy bearded young man, curious and rambunctious, think about what’s inside: a pure heart, humor that will break you into a smile, and a brain that is struggling to make sense of the world he is in.

Oh, and yes, he loves his beard.

Acknowledgements:  I’m indebted to the insights and generosity of many who made this milestone possible:  Amy Haught, IICA; Peter Blanck and Jonathan Martinis, Burton Blatt Institute; Suzanne Bennett Francisco, Disability Rights Advocate; Susan Mizner, ACLU; and all of Team Jeffrey and our families and friends.  And to:  Jim, who has partnered through this every step; Devon, who is my inspiration to write and share my voice; and Jeffrey who is my heart.

*We used this plain language document from the ACLU as a starting point.  It is imperative  anyone reviews this with their own legal adviser to ensure it addresses your legal needs.