Chapter 22: The Search

I began searching the web to find out about legal rights for kids with intellectual disability and how those rights changed when they became adults. This was the opening statement for the very first website I visited:

People with intellectual and/or developmental disabilities have the same basic legal, civil and human rights as other citizens. They may need accommodation, protection and support to enable them to exercise these rights. Their rights should never be limited or restricted without due process.

Well, that was a start. I knew all of this in my gut but I wanted to make sure I understood the legal implications clearly. Harry's rights were definitely being restricted, especially if Theodore chose to keep treating him like a child after he turned 18.

Like their peers without disabilities, individuals with ID must be presumed competent; they must also be assisted to develop as decision-makers through education, supports, and life experience. Communication challenges should not be misinterpreted as lack of competency to make decisions.

Okay, the law was on my side. But how could I use that to Harry's advantage? I wasn't a lawyer, and I had a feeling that Theodore wouldn't just let Harry waltz out of here when he was 18.

Where judges and lawyers lack knowledge about people with ID and their human rights, poor advocacy and tragic legal outcomes often result. Financial incentives frequently benefit professionals and guardianship corporations, often to the detriment of individuals with ID and their families.

This is what I feared, that maybe Theodore was manipulating Harry so he could get some kind of government kick-back because he had a disabled kid. He seemed wealthy enough on his own without having to resort to something so disgusting, but I'd seen enough of Theodore now to know he would exploit anyone or anything for his own personal gain. And I was determined to discover his hidden agenda.

"Whatcha doing?" Harry asked as he joined me on the couch. I quickly closed my laptop and said, "Nothing. Would you like some dinner?"

"Can I cook?" He asked, his eyes dancing with eagerness.

"Of course! Do you want to learn how to make spaghetti?"

"Yes!" He answered, beaming with pride. I loved that his heart was so resilient. I knew he still had to have some residual hurt inside from the way Theodore treated him, not only after the meeting we just had, but throughout his life. I wanted to get inside and help to heal those wounds, but I wasn't sure how just yet. It's one thing for a kid to be hurt by a parent, but it's another for someone like me to step in and say, Hey your father is an asshole and I know he treats you like shit. It was important for him to know that Theodore's treatment of him was unacceptable but I had to be very diplomatic about my approach.

I showed Harry how to boil the water for the noodles, taking the time to explain that with things like eggs and rice, you put them in the cold water and bring them to a boil, but with pasta, you had to wait til the water was already boiling before adding it.

He carefully slipped the long stems of pasta into the boiling water and stirred as they went limp and fell into the pot. To make things easy, we used a jar of spaghetti sauce, but I promised that the next time I went shopping, I'd buy ingredients to make the sauce from scratch.

After dinner, we made a list of all the different things Harry wanted to learn how to cook and we stuck it to the front of the refrigerator so I could either remember to buy ingredients when I went out, or we could ask someone to buy them for us.

That night, I tossed and turned for hours, so frustrated at Theodore for being so pigheaded about all of this. If it weren't for the fact that I loved Harry and cared so deeply for him, I might have left this job already, contract or no contract. But how could I leave anyone in such an unfair situation? What were Theodore's long terms plans for him? Wouldn't he be better off if he just let Harry grow up and move away, rather than going to all this trouble to hide him?

I finally got up and grabbed my laptop. I did some more research on the rights of the intellectually disabled. It was clear that Harry would have the right to make his own decisions, if not when he was 18, then for sure when he was 21. But how could I help him from my position? Theodore thwarted every attempt I made at furthering Harry's autonomy and education.

After reading page after page after page about competency, consent, guardianship, etc. I had a fairly firm understanding that the laws in Canada were comparable to the ones I was more familiar with in the US.

And this was the key fact that I hoped would help me win Harry's case: Any person who reaches the age of 18 has the legal right to manage his or her own affairs, unless the parent or guardian petitions the government to retain guardianship based on one's intellectual disability and their subsequent inability to make decisions for themselves!

So Harry would be a legal adult with full legal rights once he turned 18, unless Theodore petitioned the government to retain his guardianship. How could I stop Theodore from doing that if he hadn't already? It certainly wasn't a good idea for me to just ask him, just in case he hadn't thought of it already.

I turned my attention to lawyers in the Vancouver area, just in case. I'd never sought out legal advice before, but with my new pay grade, I could afford it. If I could find the right person for the job, someone who would represent Harry well. I read for another hour at least, previewing each lawyer's personal statement and their track records with cases similar to Harry's. By morning, I had narrowed it down to two lawyers, one in Vancouver and one in Victoria. I planned to make phone calls later in the day to speak with them and possibly even set up appointments. The trick would be getting Theodore to grant me another day off.

Once I fell asleep, I didn't even hear my alarm going off until Harry was gently shaking my shoulder. "Jules, are you okay?"

I rubbed my eyes and tried to remember what day or time it was. I reached over to turn off the alarm and answered, "Yeah, I just couldn't sleep last night."

"Aww, why not?" He asked, rubbing his hand up and down my shoulder in a comforting manner.

I shook my head and yawned. "Just thinking about some things. I'll be fine." Then I yawned again.

"If you want to sleep some more, that's okay," he said. "I can take care of myself."

And I knew he could. I battled between responsibility and the need for more sleep. "Mmm, if you don't mind, I will sleep for a little longer. If you need anything, just come and get me, okay?"

He nodded happily.

"Can you get your own breakfast?" I asked, but again, I knew he could. He seemed pretty stoked to have the opportunity to fend for himself and I didn't blame him. I fell back to sleep easily, trusting that he could indeed do many things that had been done for him for far too long.

When I woke up again a few hours later, I threw on my robe and went to see how things were going. Harry was sitting at the computer in the learning room, whipping through math problems.

"You're doing school work? By yourself?" I asked, astounded by his initiative.

He shrugged. "Why not? I like math."

I leaned over and kissed the top of his curly head. "Do you want me to cut your hair some time? It's growing pretty long."

"Mmm, no I like it. But maybe I'll pull it back in a ponytail like you do sometimes."

"That's an option," I agreed. "It's nice for when it gets hot in the summer, so all that hair isn't on your face and neck. So, what did you eat for breakfast?"

"Just cereal," he said. "With some strawberries. I wanted to make coffee for you but I wasn't sure how."

"Well, let  me show you," I said, holding my hand out to him. He followed me to the kitchen and I showed him how to measure the water and the grounds, instructing him to make enough for both of us. "You're very sweet, Harry," I told him once the pot was brewing.

"Why?" He asked with a shy little smirk on his face.

"Because you're so thoughtful, buying me that bracelet and asking how I'm feeling and even wanting to make coffee for me. It's nice to have someone care about me."

"I...I think that's why I love you," he said softly, his eyes examining the kitchen tile. "Because you care about me."

I grabbed both of his hands and encouraged him to meet my gaze. "Did you ever feel like that before? Like someone cared about you?"

He shrugged uncertainly. "Mary, maybe. And sometimes Nanny Barbara."

"How have you survived?" I asked, completely in awe. "People need a lot of love to thrive and it seems like you've been given so little of it. Yet you're still one of the most genuine and loving people I know."

"Really?" Harry asked.

"Yeah. So many people out in the real world are fake or always want something for themselves. I mean, it's not a bad thing to want your own happiness once in a while, but sometimes people use each other and it's hurtful. You don't seem that way at all."

He smiled gratefully. 

I poured the coffee that was now finished and asked, "Should we go and sit on the deck?" He agreed and followed me to the sunny patio outside the TV room.

We sat next to each other on the wicker loveseat and I put my bare feet up on the coffee table, cradling my hot beverage in my hand.

"Do you ever just get angry sometimes?" I asked Harry.

"About what?" He answered.

"I don't know, about anything."

"Well sometimes I g..g...get mad when I can't understand math right away. Or sometimes I stutter and can't say things like I want to."

"You know what?" I told him. "The same thing happens to me if I get really excited. I have a hard time getting the words out just right. It's pretty common."

"Oh, cool," was his response.

"That kind of anger is frustration. It's not really like rage, but it just bothers you when you can't quite get something right." He listened intently. "But then there's anger when someone has done something wrong or something that hurts you," I said carefully. "I got mad at my boyfriend once because he forgot my birthday and when I reminded him, he just said, Sorry, I'll remember next year."

"You have a boyfriend?" Harry said in dismay.

"No, this was an old boyfriend, a few years ago," I said. "I actually broke up with him over that. It hurts when someone forgets your birthday or another special day."

"I don't have birthdays," he said sadly.

"Yes you do!" I said excitedly. "I asked Theodore and your birthday is February 1. So you will turn 18 in the winter."

"Seriously?" He asked. "That's so cool."

"Do you know what it means to be 18?" I asked.

"I'll be a grown up."

"That's right," I said. "Eighteen is the age when you're considered an adult and you can make decisions for yourself." Okay, time to empower this boy. "Things like what kind of job you want to do and if you want to go to college and where you want to live."

"I'm too stupid to go to college," Harry sighed.

"NO!" I snapped and he looked frightened for a moment. "I'm sorry," I said. "Do you know why I kind of yelled just now?"

"Why?"

"Because I'm angry at all those people in your life who have told you that you're stupid or that you'll never be able to do anything. Anyone who has ever said that to you - anyone - was wrong! It was nonsense! You are not stupid. You are very intelligent, Harry. It's hard to forget those kinds of things when people say them to you, but will you please remember what I'm telling you now? You are gifted. You are very smart and sweet and compassionate. And you have a beautiful soul. The world will love you."

"Okay," he said, his head hanging low. I could see that it was hard for him to accept everything I was saying. Years of programming had taught him to think poorly of himself and I was determined to change that.

I took the mug from his hands and I set it on the coffee table with mine. I took his hands in mine again and said, "You are very special. I'm amazed by you every single day  and I believe in you."

He looked at me with relief and leaned into a hug, throwing his lanky arms around my shoulders. 

"Why would people say those things if they're not true?" He asked.

"I don't know, Harry. But it's okay for you to feel angry about it. They had no right to tell you those things. Parents are supposed to be loving and encouraging and supportive. I can see that maybe your dad hasn't been like that to you."

"No," he said sadly.

"And I think that's terrible," I said more firmly now. "I wish he would have treated you better."

"Me, too," he said. After a few moments of thought, he said, "What if I don't know how to do those things when I grow up? Like going to a place to live by myself. Or going to the store to get groceries. Will I be able to drive a car?"

"I think you will," I answered.

"Will you be with me, Jules? I need you to help me."

"I can teach you as much as possible while I'm here, okay?" I didn't like where this was going, and Harry was too bright to not notice the nuance in what I had said. While I'm here.

"Are you going to leave some day?" He said hoarsely.

"I don't...I don't really know, Harry. My original plan was to stay for one year, and that's until next summer for sure. Then I'll have to decide. You'll be an adult then, so we'll have to see how you're doing. You won't need a nanny anymore."

He suddenly burst into tears. "I d...d...don't want you to go. You're the only p...p...person who cares about me."

I collected him in my arms and hugged him again, placing kisses to his salty cheeks. "When more people get to know you, they will love you just like I do. You are wonderfully special." But the underlying truth that I wasn't ready to admit to myself, let alone to Harry, was that even now, after only being here for two months, I couldn't possibly imagine life without him. "But let's not worry about that for now, okay? I'm not going anywhere for a long time."

* * * * *

Yeah! Over 5000 reads - thank you SO much! <3

FYI: my search results on the legal rights of the disabled came http://www.thearc.org/

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