Conservatorship?

An Excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

Whenever Matthew was home from Camphill, there was business to take care of. During Christmas break, we scheduled his annual physical. At Thanksgiving, he got a haircut and visited the dermatologist. During spring break, it was time for a visit to the dentist.
But this last spring break, as Matthew was turning nineteen, we had some very important business to take care of. A court investigator was coming to visit our home. Peter and I were in the process of obtaining limited conservatorship for Matthew, as advised by the Regional Center caseworker who had been involved with our family since Matthew’s autism diagnosis years ago.
Limited conservatorship would enable us to continue to care for Matthew as we had since birth, making decisions about where he would live and about his education. We would continue to be in charge of his financial affairs and medical treatment. We could give or withhold consent should he decide to marry.
We had endured many painful steps since Matthew’s birth””diagnosis, search for treatment, and yearly evaluations by the school and state, to name a few. But this step was particularly difficult. It was an admission that after all of our years trying to build skills and autonomy, our adult son would not achieve the independence of which we, and he, had dreamed.
The attorney assigned by the court to represent Matthew had come to call the day before. Both the court investigator and the attorney were required to make home visits to verify that Matthew was indeed disabled enough to warrant this drastic action, and to advise him of his rights. The attorney, who later would admit that Matthew’s was only her second such case, was a young blond without a line on her face. With her businesslike, slightly suspicious manner, I felt like a scam artist looking to bilk my son out of his rights and freedom.
We chatted briefly at the dining room table, my attempts to break the ice (“I love your briefcase!”) falling flat. Then she asked if she could meet Matthew alone. I coaxed him from his room, where he was studying a book on poisonous plants, and I eavesdropped on their conversation from the kitchen.
“Do you know that I’m an attorney?”
“What’s that?”

“Do you have a driver’s license?”

Ooooh, sore subject. Wants one. Can’t have one.

“Do you have a girlfriend?” Silence.

You’re on a roll. Why don’t you ask him if he has any friends””at all?

“Do you know how much a car costs?”

“A lot of dollars.”

“Do you know how much a hamburger at McDonald’s costs?”

“No.”

He doesn’t go to McDonald’s.

After asking him a few more questions, she told me with a wink that we clearly had a good case. She didn’t know that I was on the verge of crying, and that I was desperate for some kind of reassurance that I was doing the right thing.

I knew that the young attorney meant no harm, but she had frayed some nerves and uncovered some insecurities. I worried that another grilling might damage Matthew’s ego, and mine.

A few days later, while waiting for the court investigator to arrive, I paced anxiously, wringing my hands. I envisioned a stout jail-warden type with frizzy dark hair pulled back in a tight bun, and I worried that she would bark at me and I would dissolve into tears. So when I opened the door to Claire, the court investigator, I was utterly relieved.

Claire had a shy, sympathetic smile, an open face, and brown Labrador-retriever eyes. Her brown hair was spiked in a youthful boy’s haircut and she wore a bright orange Oxford shirt and khakis. The only thing that distinguished her from a younger sister happy to see me was the badge that she wore around her neck.

I showed her to the dining room table where the attorney had needled Matthew a few days earlier, and she immediately reassured me that her visit was routine and that our case was straightforward. She explained the process and encouraged me to ask questions. Claire treated me like a heroic parent going to great lengths to secure the uncertain future of my challenged son. At that moment, Matthew emerged from his room with a long piece of toilet paper streaming from his left nostril. Why hadn’t he treated the attorney to such a greeting? He might have been spared the driver’s license and girlfriend questions. Claire asked Matthew if she could see his room, and as before, I listened from the kitchen while she explained her visit.
Matthew took it all in somberly, and then told her he could take care of himself. “I’m good at hard things,” he said proudly.

“I can see that! Wow!”

I peeked in and saw him proudly holding up the checkerboard that he made in woodshop.

“Let me look at this!” Claire turned it over in amazement and felt its well-sanded corners. Matthew studied her face while she admired his work; his smile and chuckle were infectious and heartbreaking. I could tell Claire felt it, as her voice cracked while she explained that being taken care of by your parents is a good thing.

“Your mom seems really nice. I’ll bet your mom and dad are so proud of you.” Then she asked him if he had any questions.
“What states have you been to?” he asked his new friend. Claire patiently recounted all the states she could remember, and listened in amazement to Matthew’s list.

Sobbing like an idiot from my spying post in the hallway, I quickly dried the tears with my sleeve when Matthew emerged from his room with Claire and walked her to her car.

“Back off!” he told me as I followed them out. Claire smiled and nodded””we were done. Another dreaded visit. Another bittersweet ending.

Claire’s name is on the top of my Christmas card list. I wonder when her birthday is?

About the author

Laura Shumaker is a nationally recognized writer, autism and disabilities advocate. Her essays have appeared in many places, including the New York Times, CNN, NPR, and in a popular autism and disabilities blog for The San Francisco Chronicle. She’s the mother of three terrific sons, and her oldest son, Matthew, is the subject of her book A Regular Guy: Growing Up with Autism.

Comments

  1. Janet says

    This is my number 1 concern. Our son is 24 and very high functioning, he has ADHD and Aspergers. He does drive and works a part-time job and has a two year degree from Junior college. He does his own laundry, but there are still challenges especially making decisions and being independent. Social skills are lacking, doesn’t date, I’m not sure he knows how to go about it, he has extremely rigid expectations. He receives no govt. assistance and we worry about health insurance too. any suggestions?

  2. SR 78 says

    I strongly urge parents with special needs children to seriously think about the future and what will happen to their child when they are gone. Do your best to instill independence and self-sufficiency in your children from the very beginning. Set up a special-needs trust. Don’t necessarily assume that your neuro-typical children will pick up the pieces. And if your neuro-typical children are willing/able to care for your disabled child after your death, please please please let them have a say in your disabled child’s care/therapy while you are alive. My mother-in-law suddenly passed away last year leaving my husband, myself and my other sister-in-law to care for my husband’s disabled sister. It has caused extreme chaos and stress in our lives. Luckily we are picking up the pieces but it has been a difficult and slow going process nonetheless.

  3. says

    The future creeps up on us and before we know it, it’s too late to do anyting en we are sorry we didn’t think and act sooner.
    Take the time now..!

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