Take Five: Patience in Five (Minute) and Five (Year) Intervals

My friend Claire has taught me patience. In all our discussions about our daughters (who share an extra chromosome and a day at H’Art studios), Claire has always modeled patience—in waiting for speech to occur, in dealing with school boards, in addressing questionable vocabulary, in teaching healthy food choices, in problem solving health issues, and often, in listening to me rant and rave about our latest disaster/challenge/insight. She is a calm voice of reason and I am reasonably  sure she was a Buddhist in some former life.

So I thought about Claire when reading one of Dave Hingsburger’s posts last week called Profound Rights: The Extra Five Minutes I Need to Think. And I thought about Beth hugging her pastor; and about Sammi participating in class; and about Jessie learning to zip up her coat just last year; and about Claire's daughter, country gal, picking up the phone all on her own (after years of absolutely refusing to even answer the phone or talk on the phone when someone called) and calling a coordinator to ask if she could join a program that she was interested in; and all the other individuals who just need a little. More. Time. To do what they have to do to become who they are to become.

I find I have to remind myself of this over and over and over again, because I forget so easily! We are a society that rushes, that values quick response, repartee, multitasking, and instant oatmeal (not to mention gratification). In the midst of all this, it is sometimes hard to remember to slow down, to give Jessie the chance to process and to grow. In both the short (5 minute) and the long (5 year) term. This perhaps, is one of my greatest challenges and one of her greatest gifts to me.  

When I go out with Jess to engage in some of those daily tasks of living—such as going to the bank or buying groceries or making a transaction at the library—I try to remember not to rush her and to actively tell her that she can take as long as she needs. I also usually remind her kind of loudly (well, not loudly, but not in a whisper) intentionally, hoping that others will hear and will think: Hey, it’s okay to take as long as you need! And will remember that when dealing with her or any other person who might need a little more time . . . such as myself when my hands are full, or a caregiver, or an older person whose fingers aren't quite as nimble as they used to be. "Take as long as you need," seems to be the kind of mantra that we might all need to continue to grow, to keep faith, and to honour our children’s right for respect. It’s the rushing for response that takes their rights away at times, that makes them doubt their ability to make choices, to judge, to decide what is right for them.

I have to remind myself (or call Claire to have her remind me) that patience is a key quality in all parenting, but especially in parenting a son or daughter with an intellectual disability. It just takes Jessie longer to process, to learn, to apply, and to explain what is bothering her. Or to accept help when she so badly wants to do it on her own.

So we have a new rule, what I call the five-minute-plus rule (this, in addition to the rule of one, which I will blog about at some other time), which is not really a rule about minutes or numbers, but about taking whatever time you need and I will always be there, I will NEVER give up! Because I know you need to do it your way, and your way isn’t my way (even though I sometimes forget that, but that’s why we have friends to remind us that our way is not always the best way). But when your way doesn’t work, I can show you my way or we can figure out a way that does work. But I won’t make you do it right now. I will wait for you to be ready and for you to tell me.

Whew. That was long! That’s because I am just learning this rule. That’s because I’m really good at being bossy and impatient and certain that my way is best. It is, truly, a learning process. And I am so glad that Jessie is so patient with ME!

31/21: Unreasonable Canadians: Dave Hingsburger

As part of the 31 for 21 challenge, every Wednesday during October I am celebrating an unreasonable Canadian who has inspired me with their courage and vision—through their writing or their advocacy— for a world where all are welcome, and safe! Today I celebrate Dave Hingsburger.

Dave Hingsburger is so unreasonable, he insists on seeing people with intellectual disabilities as sexual beings. He educates them about healthy relationships and abuse prevention, and gives them the tools and training to educate each other.  

A renowned sexuality consultant, author, lecturer, trainer, speaker, and daily blogger, Dave travels the country and the world empowering people with intellectual disabilities; training the people who support them to honour and teach self-determination and health boundaries; and advocates, designs, and delivers abuse prevention and other workshops that continually sell out. He also works providing direct service to people with intellectual disabilities—as a consultant for schools, parents, and agencies and the Sexuality Clinic at York Simcoe Behaviour Management Services—and is the Director of Clinical and Educational Services for Vita Community Living Services in Toronto. 

Dave writes on many topics and has a keen eye for injustice and stupidity. He also notices some of the simple interactions that make us all stop and rethink our assumptions. He celebrates being and challenges us all to notice the world with a bit more passion, compassion, and outrage. While I have many favorite blog posts, my absolutely most ever favorite about Down syndrome is one that I think should be required reading for all parents. I have his permission to reblog it here, but you can go to the original here or bookmark his blog here. Thanks Dave!

Down Syndrome, Off The Clock by Dave Hingsburger

They make, if not the best, a very serviceable eggplant parmigiana. We don't go there often, but when we do, we each always get lunch from the same vendors. As they are at the start of the food court, we grab a table right at the entrance. It's perfect for people watching, eavesdropping and is almost always the source for amusement. The parmigiana comes from the vendor right at the start of the court, Joe gets soup from the vendor next door but one. I grabbed a table just two in, with a chair removed, there is enough room for me to pull in and be out of the way.

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

(Realize that I would have listened irregardless of the boy's Down Syndrome. I would have listened if it was a couple having a spat, if it was a businessman mumbling to himself, if it was someone having an animated conversation on a cell phone. That's what I do.)

So, aside, aside, I listened.

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.

'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'

They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

On our way home, chatting about just stuff, I realized that at that moment I didn't feel disabled, it wasn't part of my consciousness. I knew that everyone saw me in my wheelchair but what they saw, what they thought, didn't impact what I felt. I'm only disabled sometimes, when things are out of my reach, when aisles are too narrow, when a curb blocks my way. The rest of the time I'm just - me.

Jessyll and Hyde, or, Unhinged By Hingsburger

It was a typical Jessie Jekyll and Hyde (or as Dan has come to refer to it,  Jessyll and Hyde) 24 hours: Failure to demonstrate even a modicum of mature behaviour (resulting in Dan and I throwing our hands up in the air and wondering if she would ever have the wherewithal to get to even a bus stop without mishap), followed by brilliant execution of complex social, leadership, and performance skills matched only by the high degree of praise from adoring public.

Okay. Not quite like that. But almost. And typical of many of our days with Jessie as she moves to separate from us—one of the key tasks (along with independence, accountability, and responsibility) for anyone moving into adulthood.

This is how it goes (or went): Friday Jessie and I were both at home because it was a freezing rain danger day (too dangerous to get to work at the Food Bank for her). But we each had completely different agendas. I, practical Mom, thought she could get the pile of writing, laundry, accounting, and organization that had accumulated done, while I finished up a contract. Her plan was to google her day away, every now and then telling me what I needed to do, immediately, to help her achieve her goals—which included, but was not limited to, making sure she could move out by March, starting an inclusive post-secondary program, driving her to a friend’s house, and dropping whatever I might be working on to help her fix her computer and then shooing me away with nary a nod of thanks. If I didn’t respond immediately, she stood by me at my computer whinging away until I either gave in or snapped.

The trend continued well into the evening, where she even alienated Dan, who, usually very difficult to nudge over onto the dark side, intimated that she was acting like a [insert rude noun used for someone who is acting selfish, thoughtless, and insolent here]. She, of course, stomped up to her room, leaving her kitchen-cleaning duty undone, and vented her anger by trolling the internet until it was way past midnight, every now and then yelling (when she thought she heard footsteps on the stairs) LEAVE ME ALONE, and, I DON’T CARE WHAT YOU SAY, and YOU CAN’T MAKE ME GO TO BED. Or, if she didn’t actually yell those things, she emitted some strange psychic energy force that was just as effective and conveyed the exact same meaning.

I, having been undone, went to bed and pulled the covers up over my head. It was no surprise that I found Dan cowering there too. We decided that the natural consequences—being tired for teaching in the morning, maybe even sleeping in and missing the drive to the class and missing teaching—would be much better than anything we could invent. But, I have to admit, I was mightily pissed that I had raised a daughter so careless of her charges (the children she was teaching in the morning) and her responsibilities (printing out the lesson plan, packing up so she would have everything she needed in the morning.) As well, I had invited a renowned blogger, leader, speaker, teacher, and advocate whom I admire (and who was in town for the day) to bring his young niece Ruby, to the class. So, I had a bit more invested than usual.

When we woke in the morning, I gave Dan strict instructions NOT to wake Jessie. It was up to her to get up and be ready to teach. She needed to take full charge of her life (or be hoisted by her own petard). Frankly, I was hoping for the hoisting option, as she rarely suffers consequences, somehow blessed randomly and frequently by the universe.

I was trumped again, as Jessie rose while I was meditating and got herself fed, dressed, and packed before I emerged from my basement lair. “Wow! Great job Jess!” I praised her, while raising my eyebrows at Dan and secretly cussing. Well, she was sure to be tired in class, and maybe then someone would speak to her about her performance, and maybe THEN she would learn that she needed to go to bed at a decent hour and every now and then LISTEN TO HER PARENTS.

Well, she did get spoken to about her performance, only it was a potful of praise generously piled on by Dave Hingsburger, who wanted to mention Jessie in his next blog about Ruby and the kids’ Propeller class. According to Dave, Jessie was welcoming, attentive, sensitive, and a great teacher. According to Ximena (one of the other teachers and a brilliant mentor to Jessie) she was full of energy and very focused; according to Liz (another teaching mentor and performer), she made great headway on the piece she is helping choreograph for the children’s show. So you see, I tried my best to find some gaps in her performance of her duties, but was bested by reality.

That, my dears, is a typical episode in our journey to independence. You’d think I might have discovered by now how to just let go and enjoy the ride, but I am a very slow learner, white knuckling my way along a path that I have very little immediate control over.

And that, I am beginning to learn, is how it is meant to be.