In Their Shoes

Will shoe closedup 07-14-15

Jeff shoe closeup 07-14-15
Solo parenting on the weeks the hubby is away is enlightening – often hard, but always for the better. I’m trying to use the one-handed-wallpaper-hanger necessity of things to drive independent one or two specific living skills each trip, in the hopes that practice makes progress and we can continue going forward.

This week it’s the socks-and-shoes routine. Specifically I task the boys to travel across space, while following multiple commands: “Get socks, go down stairs, and put on socks and shoes.”

High-functioning autistic parents may tune out right at this point, but for those of us with more challenged kiddos, multi-step, multi-location direction following is hard. Will lost 2 pair of socks on the way from his bedroom downstairs. Jeff made it all the way through putting socks on but then drifted until Mom arrived to prompt twice, one for each shoe-on moment. Considering it’s taking Jeff about 6 weeks for some semblance of consistency with the get-your-backpack-and-get-on-the-school-bus-without-Mom, and even now he’s still about 50/50 performance -our progress does indeed take practice.

I find myself thinking about life in my boys’ shoes a lot lately. My favorite shoes of late are open strappy sandals, airy and fast-donning so chill them and enjoy dew-kissed grass. My guys are closed, restrictive and multi-step to put on. That’s a metaphor in more ways than one. Call me Pollyanna but I forget how affected they are. When I see how they genuinely try to help and follow request – as in last night’s “put the bead bucket on the kitchen table” when it became apparent Jeff still didn’t get the concept of “table” – you have to love them all the more. In the lottery of life they were cheated out of a central nervous system that could process words and meaning like the rest of us. Without prompts, intonation and in-context repetition, we might as well be broadcasting in Spanish. They need a translator.

Yet there is hope. Today Jeff was more facile than yesterday – and Will, once we retained the socks in hand, commenced putting them on instead of just sitting there. The delayed school buses meant lots of household chores got done together, for more practice. As we work these things, and experience baby steps toward mastery, I wonder if other parents get to savor these minor milestones – and feel badly that my usual stressed out and over worked orientation prohibits me from reveling in them too, until life forces them upon me – and I can adopt some new shoes if only for a while.

Believing in our autistic kids

It’s IEP meeting day, and after digesting three 3-year evals, a psych eval to determine cognitive level, and a draft IEP, it’s time for a public service announcement on behalf of autistic kids everywhere.

Believe in us.

I get it that the supposed experts must rely on standardized measures designed to outline accommodations and needed support for future-planning, in order to present unbiased data. I also get it that testing is performed in contrived, out of context settings and for those kiddos who don’t generalize or who need that context as a prompt, the result is low or non-performance.

But – get ready for the soapbox – every human has an asset, or two, or twenty. When any of us work to our strengths, we will perform masterfully – far above testing will indicate. We will vastly exceed your expectations, simply because it is joy, and love, tapped from that inner wellspring, that supply us with more than what we need.

For one of my guys, his asset is his ability to perform rote, manual and repetitive tasks that align with his personal interests, such as painting and exerting physical activity like walking or carrying items. His easygoing, tolerant disposition also helps as do a few fine motor interests around mixing/stirring and writing (OK, scribbling sometimes). In addition his ability to adhere to routines he has practiced over and over, and perform them in context exceeds what might otherwise be judged by his appearance. For example, he’ll shut off the alarm and then know it means get out of bed and go to the bathroom; get the mail; when the job coach says ‘time to grease,’ he’ll perform about 4-5 steps in order to proceed with that task.

We all use our best assets at hand. I recall one corporate setting where a rather unintelligent executive used his political savvy to get his job reinstated at the expense of my friend’s job. When my friend discussed this with a colleague saying how unfair it was that his politics let him win, not his smarts, the colleague replied “what else can he use?”

So while I suppose at some level I’m burying the sadness that my guy’s shape and color recognition is variable, that he cannot read, that his attention drifts despite the pharmacopeia I’ve administered over the years, and yes that there are times when I ask him to help and he says No – I’m mindful that this same bag of incapabilities called a person scraped and greased over 100 cake pans last week so that bakery patrons could have tasty cakes for their parties – that he hiked a 10 mile/3000′ elevation gain mountain Sunday without breaking a sweat – and that he just came over independently and answered his “get up and shower” alarm on my phone, then proceeded on to the rest of his daily routine – especially when I had to tell the spouse to let the alarm ring for a while, and not intercede, because I know he could do it.

I believe in you, most special son Jeff. Just as every parent in humanity perhaps believes in their kid, but I suggest even moreso – because we special needs parents have to learn to advocate and defend our kids’ abilities against the sea of others whose jobs it is to catalog their disabilities.

Believing in you made me get up this morning, makes me cry right now at the many things you do well, and gives me the strength to fight for you today, and tomorrow, and for hundreds of tomorrows. Andin a most hidden recess of my overstretched brain, believing in you gives me some tiny grain of hope for myself – that one day I will indeed declutter my life, start accomplishing what matters to me and the world which often has little to do with my day job, and become the writer I always hoped to be – simply because I believed.

Balancing structure and free time

For kids on the autism spectrum who need structure – how much is enough, versus too much?

It’s a worthwhile question that arose out of a lovely group hike I sponsored yesterday with a wonderful teacher-participant. After many years when unstructured time devolved into inappropriate pursuits like public nakedness, refrigerator raids or masturbation, our boys live a very scheduled life. I always thought this was a good thing but as we approach age 22 and at some point, living elsewhere – I kind of wonder if it’s time to loosen up.

My twins represent the two sides of the coin about now.

Jeff seems to enjoy his free time and when bored with one activity, jump-starts readily to the next without asking. Rarely does it bridge into the realm of inappropriateness, although last summer I did create a video model on “asking Mom to leave the porch when you want to go outside.” Our prevocational forays keep him pretty busy about six days of the week now. Hmmmm.

Will, on the other hand, lately is bored after dinner when it’s free time-time, and I’m seeing multiple bolts up to his room to disrobe and lay naked while doing a host of repetitive fine motor tasks I’d categorize as non-learning focused, repetitive stimmy-play, or in some cases – like tearing the pages of books and magazine, or rooting through Mom and Dad’s drawers and bureaus – trashing behavior that’s irritating and definitely not to be encouraged. He has 4 days of caregivers’ attention Mon- Thurs after school, then a 5th day of in the community time with me – all followed by free time each evening. Jeff seems to enjoy his evening free time, while Will’s not coping with it well now. Hmmmm.

Finding the best balance of structure and free time seems a little elusive. I have all kinds of thoughts, here in the middle of the work day when I should be doing about 50 other things. – Time for some deeper reflection, and the kind of closely listening to my kids and their behaviors that may be tough at first (especially when I’m perpetually under rested like now), but that always brings us to a better place.

Answers, dear readers?

Three Goals to Live By

“We all need:
1) something to do
2) someone to love
3) something to look forward to.”

Watchwords for today, and always, brought to you and me by my wonderful yoga teacher yesterday. I’d remarked at how one of the best things people can do to help the disabled is to give them a job.My wonderful friend gave Jeff a job for the next few weeks: painting her mailbox and 6-part fence. We took photos for a social story and washed the mailbox the other day so we can get to work, albeit later than I’d like due the hubby’s desire to have some holiday time away in the mountains.

Jeff’s teacher enthusiastically endorsed the mission, and in a stroke of meant-to-be-ness, my business has rearranged itself (euphemism) to allow me ample time for the boys.

My guys lie sleeping this Saturday morning but they’re on my mind, as always. I’m jamming to complete a bunch of chores ahead of the long holiday weekend, and while they’ll have a few on their list, they deserve this morning moment. They do. And while that mother guilt is always present – did I really do enough for them yesterday? – are we doing the right things today? – the trees in the yard beyond, and the smell of the bread proofing in the oven, tell me otherwise. They grew to where there’s available space, always seeking, growing without my guidance. They found their way into the open. So will I.

As a whole new beyond opens – with my own opportunity to build an autism employment business I’ve always longed to do – I’m hopeful that they like everyone else will have something to do, and not just any old thing, but something they enjoy, with meaning and purpose to their days. I hope they know they have someone to love, if only me and each other. As for the looking forward part, there’s the car trip, the boys’ word and really our entire family’s life metaphor for a journey to some destination whose end is irrelevant – because it’s the journey that’s all that matters in the end.

TwinMom takes a break from autism

TwinMom kissed the men goodbye today (all three) and flew on an adventure. It has nothing to do with curing autism or habilitating my challenged young guys. And yet it’s tightly wound into my ability to be whole – human – and energized to do more than just do – but to create.

My guys need a re-created world. Sure they fit in most days but the next 10 months is going to be foundational. Much as I love them and try to work the independence building, they are going to have to get ready for adult life, and not just in mommy and daddy’s house. I’m fine with deferring the residential component but I’ll be Goddamned if I throw them into a dayhab world with meaningless yet safe existence 6 hours a day instead of purposeful and productive helping.

I’m ready to start living my life differently – more about the boys work of the future and less about my clients.

But first, a rare experience – a pause – an immersion in the past as my best hope for a brighter future for all. Bring it on!

The View Nearing 22

imageWe just concluded our last April school vacation, given that next year J and W will be age 22 and (hopefully) onto their adult next settings. It was a great one.

And in the wake of all the negativity coming out of the Dateline episode on aging out of school autism services – AND a crappy tour of a probably typical dayhab setting to reinforce that building a rich future for the boys will take some oomph to achieve- just take a look at the face of J above.

Smiling, determined, and hopeful.

This is face of autism we need to remember. Not just the disability – the capability. The assets that you might have to look beyond the behavior to see.

This particular day was emblematic of so many for parents on the autism sojorn. I studied the trail well and it was supposed to be well travelled, but we took a side path that wasn’t.  The trail markers disappeared. We had to gauge where we were going by instinct, reading the rise of hills and faint traces of possible foot steps before.

Swift running waters underneath the snow covered brook gave out under our feet, and 2 of 4 of us almost went for a swim. The foot path was so unstable we’d sink up to our waists.  We wandered lost for a while, following someone else’s tracks that led us nowhere.  We were way, way slower than most. My knee ached every time I sank in and to solve all the above I used the terrifically sensible strategy of a brief cry, which seemed like a good idea at the time anyway.

And yet- we emerged. We found the summit and it had J beaming as above – beaming as he does when he hikes. The views took your breath away, with hundreds of summits in bluebird view, many of which we’d done. W didn’t flop once, or even require much motivation.  We were the team we’d always been – flexible but resolute.  We made it, in our own way and pace.

Creativity is a magical thing, and knowing you can employ it is even better.  There appear to be a range of adult day programs and living options, which is great, except there is always some Authority with a stupid gotcha rule showing up. Just like school teams so quickly forget there’s an I in Indiviualized Education Plan (IEP).  Yet I’m watching a number of uber parents come up with novel options, and while it looks like hard work, it also looks very exciting to be finding your own trail. I know that feeling well.

With 11 months to go, I’m sure there will be plenty more program administrators who invoke this or that rule to make sure something doesn’t fit for W and J. And I’m still revising my map of what I think are the best trails for them.

But even when the going was a real slog on this hike, we made it, and there was that moment in the sun when the beaming came as much from within J as from the skies. I carry that feeling with me always. In Eastern circles it’s called right livelihood. Here, I call it my next best summit.

 

 

 

 

 

 

 

 

 

 

 

 

Bridges to our next phase

cropped-Burnside-bridge-in-sunlight-for-blog-08-28-121.jpg

Last night’s Special Olympics party to conclude the season has me thinking about transitions -also the tabletime topic among the parents in attendance.  W (nor J) won’t have an organized team sport this spring unless I mix up their speech therapy schedule a bit, or reach beyond the local groups here – which is actually not a bad idea.  There’s lots to be gained from trying something new and exercise plus sociability is always helpful for our family.

With one year and 17 days left in the public school system, not that I’m counting, our bridge to tomorrow seems so very near.   The above image is the Burnside Bridge in ?Antietam MD, on a Civil War battlefield we toured back when dear daughter’s Virginia college put us hear such dappled fields.    Because I like my autistic wonderboys need visuals to guide me, I’m keeping it at heart this morning.  It was such a gift of a day, with J. as usual guiding W across an expanse and somehow everyone getting their needs met.  I know that’s possible for adults with developmental disabilities, however fresh the stories of frustration that square pegs of these special individuals don’t fit into the round holes of adult programs for them.  I also know it’s very possible for me to creatively frame a life for them – and me – that meets our needs, allows us to grow and yet places us on some undiscovered path to a future full of light and promise.

I”m also heartened that I’ve made it here, God knows how sometimes.   Today is day 5 of the hubby’s seemingly endless business trip and the work demands have been ridiculous, yet somehow I’ve held it together.  My own life is on its own bridge to somewhere – hopefully not a bridge to nowhere – and I feel that too.  I’m ever mindful that I have options and can exercise them should I figure out what the heck ones I want, and more than anything manage my own warped self-expectations.

To the bridge!  to the future!   to a day with the best of all we can be.

I like you just the way you are

fredrogersbigProfound wisdom comes in the simplest packages.  Like a man in a red sweater and blue tennis shoes who simply tells you “I like you just the way you are.”

What a talisman for the day.  A FB friend reminded me that it’s been nearly 12 years since his passing, and reposted a great clip of his message when asked how to help kids understand the 911 events. The clip saw him relate how people would walk up to him and relate how good he made them feel – and how by carrying that same message forward to their own children, these people were working to make more neighborhoods feel safe and loved.

Self-acceptance is so freeing.  I found myself adopting his “I like you just the way you are” mantra as I glanced sideway in the mirror at those ghastly 5 lbs I can’t seem to lose lumped in my midsection.  I said it to both W. and J. first thing, as I caught them in the act of doing good – J. yet again independently proceeding through more of his morning routine, and W. as he made his own sandwich with that off-centered cut rather creatively into companion 1/8 and 7/8 slices.

Here on day 4 of the hubby’s business trip when lots is going wrong, so much about me, the guys and our lives are just fine.   I love you just the way you are, my friends.

A life in your own skin – autism edition

black-and-white-hands-300pxA faraway yoga studio that I love but can’t visit often just sent a gem of an email that stopped me in my tracks.  I jumped out of a document I was writing, ignored the overdue action items and pondered a truism.

Autism has a skin, and be we parent or autistic loved one, we have to learn to live in it.

For me as a parent, that means tolerating messiness, clutter and over-commitment because I know the outcome is richness, and balance in a way that simply limiting the day’s action items wont’ allow.  I thought about it this morning when I was dog tired and yet couldn’t sleep.  I started the week sleep deprived because I had a weekend jam packed with good things, and so the work things had to get shoved into less space.  At one point the hubby said to me that maybe I should stop overcommitting and making myself so stressed on the weekend.  But thinking back to all we got done, and did – I say – nah.

For W. and J., it means learning to habilitate to your flawed sensory systems.   So when Mom’s got the TV on and J. needs a break, it means J. hides in the corner, or goes into the basement sanctum of his spandex cocoon swing, and finds what he needs.

For W. it means insisting on clothing fabric and styles that make zero sense to the neurotypical, but apparently soothe and eliminate the chafing of common cotton, zippers and fitted waists.

The best part of the email was the reminder:

Be Bold – honor the season you are in, no apologies required!

Making the Shot

Will shoots BBall 02-28-15
It’s so true – parents of special needs kids walk on eggshells most of our lives.  There’s a funny saying going around Facebook circles lately that if something is going well, don’t talk, don’t act, and don’t even breathe.

How silly, really.  We’re so used to things going awry that when they actually work out, we’re stunned. – W. had a fabulous Special Olympics tournament Saturday.  While he’s scored more baskets in the past, he paid attention more, zero shoe disrobes or running off the court to find Dad, and twice he even ran instead of lumbered back and forth as shots were won and the team moved from offense to defense.

W. made the shot because he practiced lots – and because we and others helped.   I take heart on that greatly.  Today’s Monday morning solo-parent rush out the door meant a few practice tasks got expedited by me, but I take heart that every time the boys struggle, then win, over that twist-tie on the sandwich bread for their lunch, we score another point for the team.  Every time W. comes across a room to find me when he’s stuck on untying his shoes, he made the shot and so did I.   Every time J. independently follows directions and gets his toothbrush when I yell it out as I’m frantically wrapping up some work before it’s morning readying time – the crowd of all special needs parents is cheering behind me in the stands.

We’re making the shot – and it shows.  Yay!