Baby's Got New Shoes!

In which Jessie and Drummer Boy (soon to be re-christened muscleman or the Megalodon, as soon as I get his permission) plan a day that goes awry, but is rescued by new shoes and great problem-solving WITHOUT me!

With Jessie, there is always a curve ball. Every day, every event, every outing (planned or unplanned) seems to go just a bit screwy at the last minute. There is the random coyote-generated universe trickiness (“Mom, you have to come pick me up. I can’t get the #2 bus to get home because there IS no bus.” “????” “I don’t know why. There just isn't a bus!.” “Where are you?” I don’t know.” “Uh, then how can I pick you up? Look for a street sign.” “Okay. [SFX: walk, walk, walk] I’m at Bank and Lewis.” “Are you sure you can’t get to the bus?” “Mom, there IS NO BUS! And the road is blocked by POLICE.” I am beginning to see that this might be a problem. I hop in the car, and when I get there, I see that there is a protest march going on and the police have indeed blocked one of the main roads through downtown. Which means I can’t get to Jessie. Which means I have to think about HOW to get to her, or her to me. And, well, you know how it goes.)

Then there is the Jessie-engineered curve: (“W-e-ll, I was GOING to brush my teeth and get dressed before leaving. But then, I ran out of time? And I had to get the bus? And I really, really, really like these pajama bottoms? So, I just, like wore them? And they have cheetah spots, which are my favorite. And so, yeah. But now work says it’s not “appropriate” for work? So I have to come home. So can you pick me up?”)  

Or the interesting and unpredictable lack-of-skill scenario (“Mom, I am stuck on a little patch of grass in the middle of the road in the mall parking lot and there are SO MANY CARS GOING FAST!!!! YOU HAVE TO COME GET ME! I AM GOING TO DIE!” Unfortunately, there is no talking down or out of this one. The only solution involves a car key, a hasty note to a waiting client, and a quick wave to passing motorists as I dart through traffic onto the median and grab my daughter by the hand to lead her, sobbing, to safety.)

And while there are always curve balls, I am trying not to hold on tight and to encourage Jessie’s sense of herself as an effective problem solver. It is, well, hard sometimes. Okay, honestly? Most of the time! In fact, the only way I have been successful in letting go is when I physically leave the house. That seems to be the only way to loosen my grip on parenting. Which is doing great things for my friendships, but not for my work.

So. Yesterday I was at my friend CG’s for lunch. I was telling her about Jessie’s afternoon plans to meet Drummer/Muscle Boy at the mall—they were going to take the bus to meet the Boy’s mother at her work, and they were all going to look at the Boy’s new furniture.

I was trying to impress CG with my growth in “letting go.” This seems to be a big theme among the mothers I know and drag out for hikes and coffee and random book browsing.

“You see?” I was saying, with my story, and perhaps aloud, just in case she hadn’t noticed.

“I didn’t even make her look up the bus or tell me any details! I didn’t question HOW they were getting there or WHEN they were meeting! I showed her that I totally trusted her and drummer/muscle boy!”

At that moment, my cell rang. CG has lived, and rescued, our life enough to know that that was probably Jessie. And she was right.

“Hey, Jess.”

“Hey, Mom.”

“What’s up?”

“So, like, Drummer Boy can’t get hold of his mom. She’s not answering her phone. So I’m going to meet him at the college and we’re going to work out together and then go out for dinner.”

I restrain myself from asking if she knows what bus stop to get off at or how to find her way to the gym. I also restrain myself from asking if she has enough money or suggesting that she make a healthy choice for dinner. I also do not ask how they are going to meet up or when she might come home. Do you see how hard I am working here?

I do say: “That sounds like fun Jess!” and “Call me when you hook up with Drummer Boy!”

“Okay Mom!”

Phew. Well-negotiated Nan! I smile at CG. She gives me a thumbs-up.

We are past the raspberry and brownie dessert and well into the tea and coffee when my cell rings again. CG’s eyebrow goes up.

“Hi, Mom.”

“Hi, Jess.” [Notice that I do not even ask: What’s up?]

 “O.K. So. Like I’m wearing my crocks and I forgot my running shoes and you can’t go to the gym with crocks so Drummer Boy bought me a pair of running shoes . . .”

“…..” That’s me pausing and processing. My daughter has size 3 DDD feet. Not the easiest to buy shoes for. And I’ve seen what Drummer Boy wears, usually shoes about 4 sizes too big for him. We are going to end up with expensive shoes that don’t fit and that are going to trip her up in the gym, where she will end up with a concussion or a major injury. And the store at the college would never even have shoes in children’s sizes. What the heck…

“Hey Jess, you know it’s not easy to get shoes for your size feet, right?”

“But the salesman helped us, size 3! I told him size 3!”

“Size 3? They have size 3? Where are you?”

“At New Balance, at the mall across the street from the college.”

New Balance. The ONLY place in the whole city that has shoes that fit her off the rack.

What can I say? Drummer Boy just scored big time with Dragon Mom.

I raise my eyebrows at CG, wanting her to note what I am going to say next.

“Jess. That is so brilliant! You guys ran in to a lot of challenges today and you figured it all out! What great problem solving!”

CG is giving me the thumbs up. I am indeed the new queen of letting go.

“Just  remember to get the receipt, because you have to pay Drummer Boy back and you don’t really know how much . . .”

CG is now giving me the chop off your neck sign.

I quit while I am ahead.

It's hard work, this letting go.

But getting easier with my coach. ‘Cause that’s what friends are for!

For the Pedestrians and Coffee Drinkers on Wellington Street: An Apology, An Explanation

Last week we had a particularly bad morning—Jessie and I. I think the pedestrians and coffee drinkers on Wellington Street—who witnessed a car suddenly swerving to the curb and braking and a young legging-clad woman jumping out, yelling in furious anger and then slamming the door shut—might agree. So might those inside the trendy stores who just may have seen the rock-clench of my jaw and the full-body energy stomp executed by Jessie on her way to rehearsal. Where I had “kindly” driven her, as a favour, in an effort to get her to rehearsal on time in a rainstorm.  

I am learning that you must NEVER, EVER do a favour to an adolescent-brained being. Or at least only deliver the favour with the understanding that it will immediately and forever more be held against you in some Freudian warp that has morphed you into an evil car-driving, dinner-making, message-taking, cell-phone-bill-paying necromancer whose only intention is to entrap the adolescent-brained being forever in some hell that resembles, uh, let’s see, a house with people who love you and feed you and drive you places and ask you every now and then to do your laundry.

Okay. I am not being totally honest here. It’s true; I did drive Jessie when she usually takes the bus. But I think I also took advantage of the captive audience bit and may have nagged her. About getting to bed on time (so she would wake up on time and get to the bus on time), or about writing things down so she doesn’t forget them, or about being responsible, or about how if she doesn’t get her act together the only place she might be able to move out to is a GROUP HOME. . . and well, that’s probably how it went.

So when she told me that I wasn’t the boss of her and that she could do whatever she wanted and I should just deal with it, I may have pulled over to the curb a bit too quickly. Where I told her, calmly, to get out of the car. (I did check to make sure that we were close to the dance studio and that she could find her way there.) Where she heard that very dangerous calm tone and knew to step out. Where she had impeccable timing that allowed her to yell angrily at the top of her lungs “I LOVE YOU. SO THERE!!” just as she slammed to door shut. Where the pedestrians and coffee drinkers on Wellington Street (referred to at the beginning) got their mid-day entertainment.

Three blocks up the road, my cell phone binged with a text message. Jessie, as always, had the final word:

Notice how she was able to cap "NOT," just to make sure she was being clear.

Thankful Tuesday: For the Spaces Between

As Jessie gets older and matures and creates her own life, she doesn’t quite need us as much (or, some days, THINKS she doesn’t quite need us as much) as she used to. She gets to classes and appointments and events on her own; she wakes up on her own; she makes decisions about the courses she will take or the movies she will see on her own.

She still, however, sometimes needs me to drive her to performance or workshop commitments with Propeller Dance or the Down Syndrome Association. And while I sometimes grumble about the time it takes away from my work or the way she often just expects me to drive her, I am learning to be graceful about the interruptions and to enjoy the forced space they create in my life. Space for God and friendship and beauty to break through, if I let them.

Yesterday, for example, Jessie had a gig in Richmond, about half an hour outside Ottawa. As we turned down the back road that crossed over the Jock River and ended at the school where she was giving a workshop, I noticed a maroon and gold sign with an arrow. It read “St. John’s Quiet Garden.”

An invitation. Which I accepted.

l left Jessie at the school, zipped up my coat and stomped through the mud to the garden that was, indeed quiet in its blanket of white—with not yet budding shrubs poking through the deep snow. There was a sign indicating that there were two labyrinths buried somewhere underneath. And while I fear I have become a bit of a loose woman around labyrinths, I did not mind just wandering over the promise of a mindful way in to the centre. And I did not mind walking slowly around imagined perimeters or stepping gently on the untrammeled snow—there is not much call for outdoor labyrinth walking in a Canadian winter.

And I remembered that I had a camera:

So I am thankful for what I saw, and thankful too for these spaces between mothering that Jessie’s growing independence is gifting me.      

RAW , or Adventures in E-Mail Land

I love my husband. He keeps me sane. I know that on a raw day I just have to email him with some blathering chronicle of the day thus far and this storytelling, or act of confession if you will, is an absolution of sorts that sends me back on my way. The fact that he commiserates just strengthens me to be more calm, more patient, more kind.

Last week, Tuesday to be exact, I wrote a prophetic email that is an apt description of why I have a hard time envisioning working from anywhere except home. Except in my fantasies. Note [square brackets] are my clarifications.

Tues. Mar 12, 2013 at 11:49 am

Nancy

To: Dan

Oh man . . . I came home. [Dan and I sometimes start the day by going up the street to have a coffee together at our local coffee shop. I find it helps me be more productive and is a good way to mark the beginning of my workday. We find it also makes us feel like grown-ups.] Jess and I agreed that I would meditate while she had a shower and then got to work on her blog and email.

Then, in the middle of meditation she calls from above. She is feeling faint [Jessie has these random fainting spells. Not often, but, well, that’s another blog.] Also, she has not actually had her shower, but has been shaking her shaker. [Okay, that just sounds weird, but it’s what we think is a sensory integration issue and she shakes this thing that is like a large tassle for a curtain. Again, guess I should blog about that.] I walk her through what to do when she feels faint and get her to lie down with her feet up for half an hour or so. She is still pale, but better. She goes in the shower and her phone rings. Then a text. It’s Caitlin [Caitlin is Jessie’s community connector from LiveWorkPlay, the organization that supports Jessie through these transition years]. Waiting for her at Tim Hortons, but now on her way back to the office because she has waited 20 minutes. It was hard not to get angry at that! [Note, Jessie is responsible for her own appointments, as much as possible. She uses Google calendar which is synced to her iPhone. Also note, 4 missed meetings and she could be dropped from the program.] Then Jessie decides that she needs to go to the bank on the way to rehearsal because she wants to take money out because she wants to eat out before rehearsal. I am not even going to try to reason, it is her decision. BUT this, of course, need trumps any trying to finish her work or problem solve what just happened with Caitlin. She does call Caitlin and says she is really really really sorry. But she is so intent on getting out of the house in time to eat before rehearsal that she will not sit down and problem solve or finish what she is supposed to do.

I did tell her that because we were not willing for her totally jeopardize her LWP support, she needed to make a list of what she had to accomplish (including problem solving) before going to the DSA meeting [our local Down Syndrome Association where she is co-chair]. So I did force her to do that. So that was my morning. How was yours?

p.s. I am writing this to you because it may be Thursday’s blog, but by Thursday much more will happened and I will forget this stream of blurred existence. [That was the prophetic part.]

n {{hugs}}

Tues, Mar 12, 2013 at 1:15 pm

Dan

To: Nan

Hugs [what he calls me]

AAAAARRGGHH!!!!! I’m going to STRANGLE that kid (if you don’t do it first)! . . .  The only silver lining in all of this is that it keeps supplying you with raw material for your blog!

Dan

Tues, Mar 12, 2013 at 2:10

Nan

To: Dan

RAW is right!

Subject: Like Seriously

Yesterday, I woke up early to work on a looming (is there every any other kind?) deadline. Of course, it is on morning like this that you can almost guarantee that Jessie will not wake up and just go about her usual routine. No, it is on mornings like this (after a Monday morning where she slept in TWO HOURS past her alarm and missed work at the Foodbank) that she will choose to challenge every little bit of routine that we might demand of her.

We collectively devised a very simple routine with just a few simple rules (like the Rule of One, and we know how well that is working) that she has agreed to follow. We review why we have this list: to help her become more independent, but mostly so we DON’T FIGHT about what she is supposed to do. So, on this morning, of course, because I have a deadline, because I gave her 2.5 hours of my billable time yesterday to drive her to a performance to celebrate International Day of Persons with Disabilities, because, just because, she slept in and why follow a routine anyways? Yes, on this morning, she decides to push every button and limit. From deciding to go straight on to the computer (no breakfast, no getting dressed) . . .

what she was working on on her computer ... and I know this because she LEFT HER COMPUTER ON  when she went off to rehearsal

. . .  to yelling at me because it is almost time to leave and she is missing her bus pass and her wallet and . . . (but she always throws in a few responsible accomplishments into the mix, like brushing and “waterpik”ing her teeth, putting in a load of laundry and responding to e-mails).

This absolute panicked fear of mine that work and words will not have space to bloom (or even just meet deadlines) appears to be a common advent theme amongst some of my favorite bloggers (when I get a chance to read them). See Addie and her missing babysitter, or Amy Julia's ordinary hard stuff.

At any rate, its all good when I can email my love at work. Somehow the venting lets me move on to the next page, both literally and figuratively.

Jessie Flips About: Caitlin My Connector

Hey fellow bloggers, I’m so exited to update all of you on the meeting that Caitlin (my “connector” from LiveWorkPlay) and I had at Bridgehead coffee shop after I had my dance rehearsal in Hintonburg last Tuesday.

Caitlin, Jessie's connector, from LiveWorkPlay & Jessie

Caitlin and I discussed and talked about what my goals were for the next year. I told her that I was thinking of moving out in the middle or the end of next year. I had also told her that another goal of mine was to find a paid part-time job. I’m really happy and thrilled that my life is getting started because I want to live more independently. And I want to live with friends in a supported living setting where people would come in once a month and help us with budgeting, cooking, grocery shopping and the basics of independent living skills. Caitlin and I talked about that for a long time and it was really fun.  

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!

Lines, Lines, Lines

Last week Cindy http://adventureswithbeth.blogspot.ca/2012/11/what-would-you-have-done.html  wrote about whether we keep teaching, instructing, deciding for our sons and daughters (with intellectual disabilities) for the rest of their lives … or how and when we let them make their own choices, poor ones included. That is what I find to be the absolute hardest part about parenting through transition into adulthood and it is so good to hear what other parents do. I love that Joyce gives choice within limits that leaves Sarah in charge, but not in jeopardy. That Cindy wonders, as I do, what exactly you are to do when you know your son or daughter can’t see the consequences of their choices, and those consequences loom large over health, quality of life, and relationship. This is my take (today) on some of those issues.   

This period of parenting or mentoring into adulthood seems to me to be all about lines: drawing the line, crossing the line, walking the line, toeing the line, hanging it all out on the line! Just one big etch-a-sketch mess of lines that we often need to be able to erase just by shaking all our lives and starting over.

And we seem to do that every week—redraw the lines on the map of independence. Yup, she’s ready for that and oh boy, she is so NOT ready for that, and man oh man was that a mistake, and wow, I never would have thought she could handle that, and oops, but what a great learning experience. There is so much growth happening at times (as she pulls a speech together at the last possible minute and delivers it with perfect timing, or wakes up early to have a shower, make a healthy breakfast, and pack a healthy lunch completely independently AND gets out the door on time, properly dressed for the weather and with her bus pass) and then you turn around for a split second and it’s a room full of dirty laundry, no dance clothes to be had, sleeping in past the alarm, and eating 3 cookies for breakfast (but they have oatmeal!) as she rushes out the door in the middle of a rainstorm without a raincoat.

Planning detritus 

We continually bounce around between WHEN will she learn? HOW can we best help her learn?, and WILL she actually ever learn? And there are so many gray areas that are unknowns. So Dan and I spend Saturday mornings—after dropping Jessie and the perennially good-natured Jason the drummer off to help lead the children’s dance class—at a cheap dinner eating eggs over easy with bacon and homefries, and drawing out the lines of support, direction, and danger.

Without going into the food issue (that’s a whole other realm), we have slowly, over the past year, developed a strategy that is not a solution, but certainly a way to go forward.

When Jessie was younger, we built scaffolding and relationships around Jessie to make her pursuit of her dreams and passions in community possible. Then, as she matured, we began to try to find ways to take bits of the scaffolding away to give her more control over and responsibility for her own pursuits, endeavours, and relationships. Now we are in the period where she wants nothing to do with anything that smells of direction, unless it’s offered in the spirit of a meek house elf making magic and then quietly disappearing. I, unfortunately, have never been very good at meek, much to Jessie’s chagrin. So we bounce back and forth between “don’t tell me what to DO!” and “you HAVE to help me!” I often end up in bed with the covers over my head reading Lamentations or Job. Sometimes a Psalm will help. And when all else fails, there is laughter.

But it is a very real challenge to figure out what the non-negotiables are. Do you let your son or daughter . . . eat until they feel sick? Wear dirty clothes to work? Wear sparkly gold-lame clothes to work? Go for days without washing? Miss parties? Doctor appointments? Go late to work? Forget their lunch? Cross at dangerous intersections? What things are teachable, and what are not? When Jessie was little, we assumed ALL were teachable. We are learning now that all are not that easy to teach and that she may need some support in some areas for a very long time, and that is okay. But how do you determine where to keep going (patience, patience, it may not happen in your time, but her time), where to intervene (keep the bank card at home so there is no risk of spending unreasonable amounts of money in one shopping spree), where to let natural consequences do the teaching (if you forget to set your alarm, you don’t wake up, you’re late for rehearsal, and you let down your friends and co-workers), and where to just let go because it’s not really your business (sparkle blingy tops to a yoga class)?

There are so many variables at play . . .  and not all of them are predictable. How is it that Jessie learned to do an impeccable job on her teeth, including mastering the waterpik, once she got braces on with very little coaching from me and she needs no reminders to brush properly twice a day, but she won’t dry herself properly after a shower and has to be reminded to actually have a shower? I really don’t know what makes or motivates her to learn and master certain skills. She wants to learn to cook, but won’t follow step-by-step instructions.

So, we and she are learning by trial and error. It’s the trial and error and review and discussion that help us figure out what kinds of supports she still needs, and what areas we should be letting go of. The bottom line is, will it kill her? If yes, we intervene. We teach, but we’re also not willing to live with the consequences, so we intervene.

If it won’t kill her right away, but may in the long-run, we try to develop some simple rules and supports (around food, it’s the rule of 1: take ONE cookie, ONE slice, ONE, ONE, ONE, you can’t go wrong with one, its simple, it’s a good place to start, it doesn’t require much thinking or decision making) and are ready to intervene when it’s just not working.

If it won’t kill her, but will have a negative effect on her independence, being in community, and quality of life, we try to figure out what supports are critical and put them in place. This is still a work in progress and we have a growing list on the white board that now includes (these are the things that we have found to be critical in supporting her freedom and independence): Sunday review of the calendar and upcoming weekly commitments; Thursday review of accounts & spending, with monthly account session at the end of the month; 1^st of the month shopping for basics (bus pass, toiletries, hair); nightly review of what’s up the next day; and an agreed upon basic daily routine (based on a 9 to 5 work day, where there is no media (except work, social, or education related) and a small list of tasks (check, respond to, and file email; work on goals; do chores) to be completed.

And if it won’t kill her at all, we just step back and let her be her sparkly, blingy, Glee-loving, song-singing, romantic, creative, so totally unorganized, messy self.

31/21: Bittersweet

Yesterday’s Retro Jessie postwas bittersweet. In typing it up again (the whole series was done on a different and incompatible computer system), the irony of re-posting a letting go piece from 1996 just when we are struggling with that same process right now, left me deflated and somewhat depressed. Perhaps, if it weren’t so close to Halloween or the days were lengthening instead of taking on those long November shadows, the reposting would make me laugh, or just refocus me on the love part.

Instead, my sadness was fed by a Sunday morning sermon on Job and a car full of CDs by women singer-songwriters with dark and love-lost stories of loneliness and aging regrets.  I came home, went to bed, and pulled the covers up over my head. I let my family fend for themselves (I think this made them happy) and in my head argued that I was regenerating positive energy. Or not. Whatever.

Let us just say that there are points in the transition years where I have no idea whatsoever about what we are doing or where we are going. While there is the Jessie-defined North Star—a clear and welcoming vision of a bright and loving future—the getting there is a very bumpy ride with many detours and sinkholes and one-lane reductions. I am very slow at learning what I am supposed to be learning (and obviously have not learned it yet). I know it has to do with letting go, and letting go again, but I also know, because it is Jessie, it has to do with support, and that particular mix for an adult achieving independence is a particularly tricky concoction. 

Oh I wish we still had that Harry Potter potion maker that Jessie got one Christmas, and that in addition to elixirs of life, polyjuice potions, and veritaserums, there was a nicely package potion for parenting into adulthood. But, alas, we sold it at the last garage sale and I am not sure we had any potions left.   

At heart, this transition bit makes me see just how much I struggle with loving and letting go. And I read about other families going through a similar process and find them all so much more, well, positive. And energetic. And loving. And witty! Oh I long to write about this period with wit and humour and good grace. But mostly I just yell. Or answer cell phone requests for redirections after getting on the wrong bus. Or drive to pick up said lost traveller.  

So, for today, I will not detail the yelling Saturday morning we had trying to let natural consequences reign, but will leave you with the only photo we managed to take at the previous evening’s Down Syndrome Association’s annual  general meeting—which is a wonderfully attended dinner dance (free for members!) for families and friends of all ages. 

Jessie and drummer boy sat at a table of more than nine young people their age, and we had to drag them away at the end of the evening. It was a Halloween theme; I can’t remember exactly what drummer boy and Jessie were, except that there was some underlying punk theme. I will post another time about having to read the riot act about dirty dancing at a family dance.      

LWP Is PDG

Today was our appointment with Allison from LiveWorkPlay. This is Jessie’s Takeover (I wrote “take on it” but she changed it, fittingly, to “takeover.”)

Today at 1:00 in the afternoon, I had a meeting with Live Work Play’s Allison Moores. Allison talked a little bit about what LiveWorkPlay is and then we moved on and talked about my goals and dreams for my life now and for my future. My main goal and dream that we had talked about was moving out into a supported living setting where I would live with my friends.  And through that she had told my mom and I about how Live Work Play would help me and my family to help carry out the supports to help me achieve that goal. It was really fun and I really loved it. I’m finally really excited about what’s happening.

So. We get to move forward with a bit more support. A chance for me to back off and for a mentor/advisor/person to step in and work a couple of hours a week with Jessie, setting goals based on her dreams and helping her find the supports and strategies to be able to move forward. That means its someone else who gets to help her delve into the world of making choices, setting goals, and following through. That’s a big sigh of relief (for me) and a huge vibrating grin (for Jessie).

Relief for me, because I feel like a load is being shared, and while Jessie has a good rich and active life right now, there are areas that need to be explored further (education, career, a home) and I’m just not the right person to direct and drive it.

A huge vibrating grin for Jessie, because she gets to share her vision with someone who won’t roll their eyes when she sets her long-term living goals as moving to California with her boyfriend so he can pursue his wrestling star dream and she her acting dream. Someone, she likes to say, who is her personal assistant. Well, we’ll see how that works.

But, we have all agreed that the goal will be moving out (target=before she’s 25) and that the focus will be on all those things that will help her achieve that goal (anything from organizational skills and meeting and talking with people who have moved out and are living with friends or on their own, to researching areas in the city to live and budgeting).

We will meet again next week and Allison will bring Lisa, the person who will be supporting Jessie. In the meantime, we fill out forms, brainstorm more ideas and questions, and step back for a moment to breath and give thanks.

So. LWP (LiveWorkPlay) is PDG (prettydamnedgood). It is a work in progress, but with LWP I’m feeling a bit more hopeful about the progress!        

Thankful Tuesday: Hitting Empty

www.michaboyett.com

It was a long weekend. A weekend that ended in me “quitting” my job as organizer, driver, reminder, finder, money lender, food maker to my lovely daughter with something extra, which, during these transition years, seems to be mostly attitude. By Sunday night, I am afraid, I had let her reduce me to tears. There is not much that can reduce me to tears, but my daughter has always been able to find the right combination of obstinacy (on better days, persistence) and mess (on better days, creativity) that will do so. 

I am never proud when I quit (as you can see, I’ve done this before), because I know it won’t last very long. It’s just a last-ditch effort to get a measure of compliance (about doing chores, cleaning up, following through, completing tasks, honouring commitments) or even just a smidgeon of respect. I would never go as far as to expect thanks. Because I am, after all, a mother of a twenty-something year old daughter and we mothers of children of that age have to forgo gratitude (except from fathers/husbands/other mothers/family members) for a number of years as a kind of Buddhist test of detachment. Or maybe it’s our tempting time in the desert. Whatever the metaphor or path, I pretty much suck at the transcendental part of it, and always seem to emerge bruised and dazed instead of transformed. I fear that I will be given the opportunity to do it over and over again until I get is right, and I’m not sure that will be in this lifetime.

And so this is what I began to write Monday morning as I thoughtfully tried to prepare for the Thankful Tuesday blog.    

“I am determined to pull thankfulness from me. Bit by bit, thread by thread, and hope that it is not my unraveling. 

I am determined to find thankfulness within me, underneath the dark place of tears and frustration that is my daily dwelling, and hope that this thankfulness is more than a trite platitude that will wither in the light of day and reason.  

I am determined to let go of this determination, and let all that is wash over me, let the psalms arise from my heart, psalms of joy, of pain, and be grateful that I know that there are psalms that I can let pray for me.”

And then the phone rang.

And I answered it.

It was Alison. Alison whom I didn’t know.  From LiveWorkPlay, an organization that supports people with intellectual disabilities to have a good life with a very person-centred and inclusive approach—saying that there was a spot for Jessie in their Foundations program.

And I laughed out loud and said, “Okay, who is this?”

And it was still Alison, from LiveWorkPlay, only now she sounded a bit confused.

And then I gushed, I think, and said “Really? Are you really sure?”

And when she reassured me that she was really sure, I almost hung up the phone in my excitement to share the good news with all those who love me and are worried about my sanity.

Now the back story of supports for people with intellectual disabilities in our region is rather long, but can be summed up quite nicely as: pretty meagre pickings (unless you have a lot of money and can pay for and create what you want). While Jessie has a good life, it is fraught with certain planning and funding challenges, particularly as much of what she wants to do (and is good at) doesn’t completely exist and needs to be patched together in increments by her parents, whom she resents because she has this burning (and, I keep reminding myself, natural) desire to do what she wants, her own way, without them telling her what to do.    

So, just to make sure you understand completely the miracle that occurred, Alison was offering Jessie a spot in their Foundations program—a program where ANOTHER PERSON would help to plan and support her transition from a school-based to a community-based life. It’s the OTHER PERSON here who is key (just in case you didn’t get the meaning of the caps). There will be a NOT MOM person helping plan, set goals, and connect with community (where she is very connected already, but needs some help managing all her commitments). Some NOT MOM helping her fulfill her dreams and goals, and maybe convincing her that following the actual steps in a recipe is a good idea, that adding events to your calendar is a good idea, that getting up on time so you can eat breakfast before you go to work is a good idea. Some OTHER PERSON drawing supports and community connections together to help support Jessie in her dream of moving away from home. Some OTHER PERSON (did I say that?) doing some of the things that I now do, and doing them with much more cooperation from Jessie, because that other person is not ME!    

As soon as I got off the phone, I called Dan at work and shared the exciting news.

“Look Nan, I know I make fun of it sometimes,” he said, “but do me a favour. Keep going to church.”

We meet with Alison on Wednesday.

In the meantime, I am continuing with the burnt offerings. 

Retro Jessie: Life With Jessie 9: Dancing at Dinner [1995, 5 years old]

I am ready for school to start. It’s been a long hot summer and I am tired. Tired of doing battle with a very stubborn 5 year old. Dan says she comes by it naturally and looks at me sideways in a knowing manner. Okay. Okay.

But my greatest fantasy is to wake up, see Jessie’s smiling face, say good morning, and have her say good morning back. Instead, the first words out of her mouth, to me, are “NO!” It doesn’t’ really matter what I say, I just provoke this automatic response in her. She has also taken to stamping her foot, turning her back to me, and sticking her noise in the air in an attitude of “you can’t make me do anything!” I am exhausted with my very concentrated efforts at patience and consistency. And when I lose it  . . .  well, I know what the Queen of Hearts in Alice in Wonderland is based on. That overwhelming and irrational cry of “OFF WITH HER HEAD” is a very good likeness of me around dinnertime at the end of a long, hot summer day.

I go to bed at night with parenting books trying to figure out my options. The most appealing is a long holiday by myself, which is just about as likely as winning the lottery. So I find solace in other mothers of five year old daughters. We remind ourselves that five is a difficult age as our daughters strive for independence and separation. We trade ideas on how to give them responsibility that they can manage without causing anyone bodily harm and brainstorm natural consequences. We all agree on one thing. When our daughters reach adolescence, we’re leaving home.

My biggest battle with Jessie has to do with her sense of time, or lack of it. As a toddler, I didn’t expect her to fully grasp the concept. After all, wasn’t it her job to explore every diversion between home and playgroup or the park? The double acorn, the crooked front steps, the feel of grass as you lie looking up at the sky and can’t  figure out why your mother is closing her eyes and counting to 10. Playgroup starts when you get there. Isn’t that the way the world works? Oh, if only it did. Any transition, any movement from one location to another could last as long as three or four hours if we went on Jessie’s schedule. And then she would miss so much—like school, playing at the park, and swimming lessons.

Jessie loves swimming. This summer she took lessons every morning and finally mastered this breathing thing. Fearless as she is in the water, flailing and grinning with wide open eyes, it has taken her a long time to realize that you take a big breath before you put your head in the water.

But when you finish swimming you have to get dressed and go home. Well, I guess you don’t have to, but hanging out in a locker room for a couple of hours every day is not my idea of fun. I guess I’m too driven, in too much of a rush to get on to the next thing. But I would like, just once, to be able to go from point A to point B without having to plan for each step in order to avoid a battle with Jessie over: getting out of the pool, getting into the locker room, not going in the whirlpool, getting in the shower, getting out of the shower, going to our locker without climbing inside very other locker (there are more than 100 of them), putting on each piece of clothing, and so on . . . One day I followed her lead and we got out of the locker room two and a half hours after her lesson. And while I’m willing to do this sometimes, there is no such thing as sometimes with Jessie. If you change the routine or don’t follow the well-mapped out plan and forget to be consistent you are right back where you started—prodding, reminding, ignoring, coercing, and on really bad days, yelling.

Sometimes I feel like giving up, but I don’t because I want, so much, for her to be independent, to do the things that she can do by herself. And the look on her face, when she gets her bathing suit on by herself or gets the paints out, is worth every one of my own personal battles with frustration, anger, guilt, and exhaustion.

This summer seems to have been extra hard on both of us, and when Dan comes home from work, I just want to go to bed with a good book and dissolve into somebody else’s world.

But dinner is the time for us to be together as a family, share moments of our day and reconnect. It’s  a time I would like us to savour and enjoy. It doesn’t always happen. We’re tired, it’s hot, Jessie wants to play trolls with Dan, and there’s Mom with this image in her head of the happy family around the dinner table.

It’s Dan’s turn to do battle with Jessie about staying at the table until she is finished. I’ve given up.

For the seventh time she pushes her chair back from the table and just as we are about to tell her that her place will be cleared, she says “I will dance for you.”

Dan and I close our eyes, weighting the consequences. We should say, “You can dance if you are finished your dinner,” we should be consistent, we should follow through. Instead, Dan turns up the volume.

We sit and watch Jessie dance. She sways and moves her shoulders and turns and pirouettes. Her eyes are half closed as she listens to the rhythm of the jazz and is moved by it. Some of her awkwardness is transformed into a delightful quirkiness that is both cute and very serious.

As I watch her dance in the fading summer light, I realize with a pang how much she has grown. She’s developed her own way of moving, of listening to the music that is this life around us. My only hope is that we’ve given her enough courage and comfort to always want to dance at dinner.

The music stops. She bows and looks at us expectantly, defiantly, with pride. Waiting for us to clap. We do. Not because the dance is finished, but because it continues.  

Oh, The Things You'll Let Go Of!

There is a great deal of letting go required in parenting through transition. It is causing Dan to look at me sideways quite a bit. You know, like when I say: “Well, perhaps we should just accept that she is not a reader.”   

This is not about trying to teach her to read and after years and years of trying deciding that it’s just not something that she will do. This is about her being really, really good at reading, and then deciding that she would really rather do something else with her time.

You see, Jessie is actually quite a good reader and when in the habit, devours books. She was raised by two avid readers and writers and grew up surrounded by shelves brimming with leather and paper and hard-backed spines beckoning all sorts of adventure—from piglets and pooh bears to hobbits and dementors. Teaching her to read was my great delight and one of her proudest accomplishments; it seemed, to her, to offset a certain challenge with bicycles and offered her a coveted and honoured spot among her peers. And it opened up worlds and words that expanded her universe and allowed her discover her potential power. 

Roald Dahl was always a favorite, from George’s Marvelous Medicine to Matilda; unicorns, dragons, and river rats were as familiar and as loved as kindred spirits and life on the prairies. As she matured, so did the books, but still there was this attraction to magic—from Harry Potter to Twilight. Unforeseen climaxes would leave her shaking with grief holding on to a tree in our front yard, wailing “But Bella is going to DIE! And I’m NOT going to read any more!” Certain she was, that she could forestall that death just by not reading it.   

However, these days she chooses not to read unless forced to. And then it takes at least 3 days of “forcing” (i.e., you have to read for half an hour before you can go on the computer) before she switches gears and can’t be found without the book that she was “forced” to read. But given the amount of “forcing” going on and the amount of fighting and resistance that this engenders, and given that she is a relatively mature young adult,  I am thinking that I need to let go of who I want her to be (a reader) and love her for who she is (someone who reads sometimes, maybe).

It never occurred to us that Jessie would learn to read, to enjoy reading, and then choose to not read. Jessie learned to read when there were not as many resources about teaching reading to learners with Down syndrome as there are today. However, looking back I know that Jessie reading was not just a basic skill, it represented breaking down barriers, stereotypes, and prejudices. Jessie reading was a statement of liberation, of equality and equal rights. It was part of the road to freedom and self-advocacy.

So you can see why her choosing NOT to read, leaves us somewhat aghast. It’s hard to let go of something that big and deep. And then we have to step back, as all parents do (here is the equality) and let her follow her own road, her own passions and desires, and let her make her own choices, even if we think it’s an abomination! Here is the real test of how much we believe and uphold her right to self-determination, of how much we are able to really let go of our vision and commit ourselves to hers. Because, let’s face it, not reading is not a life-threatening choice. The only thing it really threatens is my sense of pride and some underlying intellectual snobbery. And maybe those need to be uprooted too.     

A New Mantra

In my question for spiritual balance while raising a child with very typical needs (that do, sometimes, have to be met in special ways), I have employed numerous disciplines and practices, many of which I am not too proud of, so won’t share publicly.

Others—such as a daily meditation practice, going to church with people I love, and drinking copious amounts of very dark coffee—I would highly recommend. On good and deep days, they help me see God’s blessings in each moment; on bad and fraught-with-struggle days they re-centre me and even offer a chance to begin anew. Or at least stop me from running too far away from home.

My daily meditation practice, for example, has taught me the value of a mantra. A mantra is, according to Oxford (because I only ever use Oxford) “1. a word or sound repeated to aid concentration in meditation. 2. a Vedic hymn. 3. a frequently repeated word, phrase, etc; a slogan. And in thinking about the mantra, I realized that I use two kinds: a spiritual mantra (which has remained the same over the years and is an Aramaic phrase—Maranatha—which means Come Lord Jesus and sometimes, when I’m particularly in need, Come Quick, Come Quick, Like Now Lord Jesus), and what I have come to call a parental mantra (which has changed with every new developmental milestone or challenge).

When Jess was little, my mantra was “Good job!” always praising the action, not the child (that, I think, defines a certain generation of parents). Our days were filled with litanies of “Good . . . . washing your hands . . . listening . . . waiting for your turn . . .  signing . . .  sitting on the potty . . .

When she was in elementary school, she seemed to need a lot of encouragement not to give up on difficult tasks, so my mantra was: “You can do it!” Or, in many social situations where she would impulsively disrupt an activity for attention (also sometimes called hitting) it was “Stop and think.”

In high school, the mantra was used to avoid power struggles, but instill responsibility and self-determination (i.e., it’s your job honey). It involved “yes …. when . . .” conditional sentences. Such as:

Yes, you can go to the movie . . . when you have finished cleaning your room.

Yes, you can drive a car . . . when you get your license.

Yes, you can go to the dance intensive in Seattle . . . . when you save enough money to get there.

Yes, you can get a guitar . . . when you research which one would be best for you and save enough money for it.

Yes, you can go on tour with the Jonas Brothers when they invite you.

Yes, you and DB can get married when . . .

However, this doesn’t quite cut it these days, as Jessie is still liable to struggle and rebel against the limits that don’t allow for instant gratification, and targets her ire at me, the bearer of conditional caveats. Ah yes, “mother/dream-killer” is the flip side of the “mother/maker-of-miracles” coin.

I was discussing this challenge with our minister Christine one day over coffee (she happens to have twins the same age as Jessie who have moved out into their own apartment), and she offered me the best advice I have had in a long time. It was about letting go and loving. Okay. It was about pretending to let go and love so you don’t drive yourself, and your children, crazy. I guess these are things you learn when you study theology.

Anyways, she said that as parents of young adults we have to accept that for a number of years the only phrase we should ever utter is “Good for you!” Any other fantasy that we might have about guiding or mentoring our offspring at this point in their lives was best left in the closet, to be dusted off, perhaps, when they had their own children.

Hmmm. Sounded like the new mantra I was looking for! Simple. Positive. And very realistic. Might even unhook me from thinking that I was supposed to teach Jessie how life works.  

So I’ve been trying it on for size:

Mom, me and DB are going to start a band. Good for you!

Mom, I want to convert to Judaism. Good for you!

I was thinking I could write myself into a Glee episode. Good for you!

I want to make sushi tonight. Good for you!

I’m going to go to Halifax and live with Rachel. Good for you!

I thought we could convert the basement to a sound studio and could make an apartment down there with my own entrance. Good for you!

See what I mean? It works, doesn’t it!

And I’ve gotten a bit creative with it too, because I don’t actually want her to KNOW it’s a mantra.

Mom. I want to move out.

Good for you.

I think I want to live with Country Girl and Lyrics Lady.

Good for you!

I’m thinking maybe in January.

Good stuff. 

(See how I varied it up a bit so she wouldn’t realize that it was a mantra? And besides, she changed it from an original plan to move out in December, so I wanted to praise her more realistic time frame).

Christine was right, and I, at least for now, am at peace.

Transfer(able) Skills

This bus that Jessie is on (the lovely inspiring moving busthat her PR professor talked about in her life metaphor) may be memorable. But it is also expensive. At least the way Jessie paid for it Monday.

Since graduating from high school in June 2011, Jessie has become quite accomplished at taking public transit on her own around the city. While this has required an interesting teaching technique (one part scaffolding, one part being yelled at as a mother-torturer who is making her take the bus when it would just be easier to DRIVE her! ) Jessie has successfully mastered the routes to more than 12 of her regular life destinations (including the Food Bank, H’Art Studios, dance rehearsal/class/teaching destinations, as well as all the arts venues in the city). There are so many locations because her schedule is what we have come to call irregularly regular (see calendar ). I.e., she doesn’t attend a program or work at the same place every day of the week.

Jessie is proud of this accomplishment, and so I am I, but probably for different reasons. Jessie, because she can now go just about anywhere— and I swear mastering our bus system is akin to surviving an Outward Bound adventure; and I because a) I survived the teaching process, and b) I get to add another hour or two to my working day. The only drawbacks are the number of junk food establishments she has to walk by en route (did I say walk by?, well, we are working on that), and the random unpredictable calls I get when she gets lost and I have to try to find here somewhere in the nether regions of the city.

Since she takes the bus so often, Jessie has a bus pass that she has to buy monthly. This, and a selection of basic health care and other items—mostly black pens, notebook, and paper, which she goes through at an alarming rate—is what she is responsible for remembering to buy out of her budget for basic living expenses. Sometimes, though, she forgets to buy the pass and then panics the night before the 1st of the month, and comes up with what she still thinks of as a brilliant solution: me driving her to work.

I say still, because me driving her has NEVER been an acceptable solution. It may be on the solution list, and it may be acceptable to her, but it’s never one that I agree to! Ah, the dirty work of teaching some measure of independence.

Sunday night she realized that she hadn’t bought her October bus pass, so she went to the corner store and bought 2 sheets of bus tickets (2 tickets for a bus ride, 6 tickets to a sheet) to get her through the day . . . and some in reserve just in case.

Monday, when she came home from the Foodbank (where she volunteers 2 mornings a week), we went through her purse to clean out the receipts and other bits of flotsam. Where I found this:

Six transfers, and NO bus tickets.

It appears that she used bus tickets EACH time she got on a bus (3 buses there, 3 back), instead of a transfer , because she couldn’t find her transfers . . . in her mess of a purse!  This is how much it cost her to ride the bus Monday:

She didn’t want to talk about it, until I translated it into more meaningful terms, i.e., that taking the bus had cost her the equivalent of 8 muffins or a new CD AND left her no money for snacks for the week. THEN she was willing to sit down with me to review the use of transfers again.