Roots, wings and guardianship

Jul 8th, 2011 | By | Category: Autism Spectrum Perspective, Recent Pioneer Press Columns

As seen in the St. Paul Pioneer Press on July 8, 2011.

Helping our children to feel both grounded and independent is a fundamental tenet of parenting. So we give them roots and wings by imparting skills and values. We harp on them to buckle their seatbelts, eat their veggies, and treat others with respect. After we’ve counseled them on how to do their homework and manage money and relationships, we guide them toward a college or a career path. All with the expectation that when they reach adulthood, we can step away as they launch their independent lives.

Except when they have special needs.

Recently, my friend Peg mused on her blog about the import of her son’s impending 18th birthday. Her thoughts mirrored my own in many ways, reminding me that the journey of a special needs family may be difficult but is not unique. Our shared experience is that milestones others celebrate can be more painful than pleasant for us. Like Peg, I recalled how the 16th birthday brought no angst about whether he would pass his driver’s test, for he will never get behind the wheel. There was no mortarboard or grad party to commemorate the successful conclusion of high school, for he hadn’t quite hit the mark, so he continued his education with a transition program.

Over time, the expectation of emancipation passed through my fingers, like the sand in an hourglass. With his 18th birthday on the horizon, we prepared by taking him to court. On an August morning several years ago, we walked into a packed courtroom and relinquished the dream that the therapies, diets, medications, and strategies we had employed since his diagnosis would rewire his brain and render him a typically functioning man who would attend college, find a job, marry the love of his life and become a father.

We had readied ourselves for court with the assistance of several professionals. His physician had confirmed his autism diagnosis. A court visitor had stopped by our home to make an assessment, which contained the words we had dodged for so long – incapable of making major life decisions; vulnerable to potential exploitation by others. We were referred to attorneys who specialized in the process – one for him, another for the petitioners, his parents. Since he had no assets, he was granted “in forma pauperis” status, so the county covered the expense. Once the paperwork was complete, all we needed was the judge’s approval.

As we sat in the courtroom, surrounded by acquaintances with their own agendas, I felt exposed. I had not expected there to be so many familiar faces witnessing my moment of reckoning, much less the tears I couldn’t control. There it was for all to observe – my full-court press to guarantee my son’s independence had not been ample after all. The outcome would be confirmed by the court and become part of the record.

When a child receives an autism diagnosis his loved ones experience a loss that may not be well defined but is deeply felt. As the years passed it became more evident that the loss of our dream would include the forfeiture of a future free from responsibility. Committed to ensuring roots were intact, even if wings could not soar, I accepted responsibility for managing my complex son’s well-being for the foreseeable future: his medical care, his money, his living arrangements, and any contractual obligations.

Burdensome as they may be, guardianship, conservatorship or power of attorney arrangements provide roots and critical protections for an adult child who has limited wingspan. After the 18th birthday, a parent who manages her special-needs child’s medical care would be in the dark absent authority for medical personnel to share information. Moreover, a special needs adult could incur indebtedness or assume contractual obligations without some form of legal protection.

The potential is frightening. An unshielded adult who lacked capacity to manage funds would be an easy target for pitches from cell phone providers or credit card companies that could lock them into long-term or high-interest obligations. They could fall prey to eBay auctions, not understanding the nature of the commitment, or street peddlers who make a compelling appeal. They might answer the call to serve our country.

While they haven’t experienced the same loss of the dream or the lifelong duty, many adult children find themselves in a similar situation when they assume responsibility for caring for their aging parents. They must go through a similar process to ensure their parents are not victimized or to guarantee they can remain in the loop when addressing medical concerns. Often, it can be challenging to convince a parent to accept the limitations newly imposed by aging or illness. These are the duties inherent in the parent-child bond, though, and they cut both ways.

Much has transpired since our guardianship hearing but little has changed in our relationship. That milestone left its mark. I left our brief court appearance with a heavy heart, feeling that my son was now tethered to my hip forever. While I was sad, he was relieved because our new arrangement offers him security, just like the seatbelt he never fails to engage. For when the judge had asked whether he concurred with the guardianship arrangement, he had replied, with both welcome humor and sincere conviction, “Yes judge, because without my parents making my major life decisions, I’m basically screwed.”

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5 Comments to “Roots, wings and guardianship”

  1. Steve Ochse says:

    Caryn,

    I can say with a great sense none of your readers nor I can imagine the sense of responsibility and weight there is on the parents of a special need child; however, your words fell heavily upon me as to an even better appreciation and understanding of what it truly means. I marvel at your strength and the quality Mother you are to Jack and all your children. Thank you for your powerful message.

  2. Matt says:

    Not only was I unaware of the importance or need of going through these procedural steps, I had no idea what it would require to do so. It is a very relevant dimension of living with special needs children, or adults that is seldom talked about. Your article brought to life the “real” importance of planning for, addressing and the implications in protecting otherwise vulnerable family members. Additionally, it lent insight into the emotional experience of settling and planning for these family matters.

  3. Linda Rushmann says:

    Caryn I too had never given many of these things a thought. It feels thoughtless and shallow for me to admit that. Once again I am in awe and full of admiration for you as a parent. It is no accident that Jack was blessed with his family…..and he is SO right…Without that Sullivan Family….we would all be “screwed!” Well said.

  4. Wendy Fields says:

    Caryn, Thank you. Your article was very difficult to read, but as the mother of special needs son who recently turned 16 and, is not driving, I can only tell you how much I appreciated your honestly. I am still embracing the idea of a mircle which I know i must let go…your article helped get one step closer to reality, which is where I need to be moving.

  5. Caryn, thank you for so eloquently describing the process we as parents of young adults with autism face when applying for guardianship.
    Listening to your experience I am grateful that here in New Zealand, in our experience, it was not such a traumatic event. We did have the advocate for our daughter, however we did not have to sit through a court appearance, which in my mind would make it all the more difficult. The second time we had to reapply after 3 years) if was even easier.

    For me the realisation that our daughter is always going to need huge support is sometimes overwhelming. To me it is enormously comforting to know I can make the decisions that are required to help make her life joyful purposeful and keep her safe.
    Julie

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