We special needs parents need to savor our kids, because they’re kids no more before we blink our eyes.
Today is Will’s last first day of school, as a 21-year old “12+” special student at his collaborative. Only 6 months more and he’ll age out of school entirely, for the bright world of adult services – said with emphasis and maybe self-persuasion on the ‘bright’ part.

We did not have the get-ready-night I planned for him. Dinner was rushed, and we stayed out late helping the daughter move from her own last, first – her last night in her first apartment. The ice cream shops were closed by the time we were done and ready for the promised reward. We had to settle for taqueria tacos at 10:30 pm, which were actually quite yummy followed by supermarket cookies. Instead of whatever calm preparation I had in mind for him, Will spent a few hours carrying moving boxes and college-style garbage bags stuffed with sheets and hangers. And in between he walked 3/4 of a mile between apartments twice.

And yet as always, the moment showed us all at our best. Will (and Jeff) have such placid dispositions. When the family moving van had to leave without us in the new apartment sans TVs or internet, they waited patiently while Mom amused herself chatting with the new roommate. They tolerated the drives around town, and tacos that weren’t quite from the Ortega box they’re used to having, and sadly no ice cream. This was after a day when Mommy yet again was consumed with work and the skills trainer, God love her, had a far more academic agenda than I had in mind.

Will just kept on smiling. I’m not sure why. Because he was busy? Because someone was engaging with him? I like to think it’s because he knows he’s loved. His male teacher hates this, but Will prefers holding someone’s arm while he walks. As we crossed myriad crosswalks on the streets of the city yesterday, I left the warm press of his hand against mine. It was a hand bonded to the holder, as we crossed new paths toward the sister’s new place – and metaphorically across our own.

While that face is wearing a bleary sleep-deprived look right now as the alarm rang and I made sure he answered it – yes he is a normal young man – I’m proud of this young man’s last first day of school. It’s going to be the best. Because he’s truly the best.

What a view!

Thank you DP, a participant in last week’s group hike, for sharing this. We had our biggest group hike ever – 17 participants – including one for whom hiking was totally new. It was a tiny walk for Will and Jeff but I was so proud of a few participants who had to really struggle and work hard at the motor planning element. I learned some important leader-things to better facilitate larger groups with individuals of widely varying hiking speeds.

As I’m in stressed work mode, with multiple priorities/never enough time, this is my screen saver for the day. It’s a reminder that there’s a horizon bigger than the little pebbles in my day – and a long view that’s open for the taking, if I just look beyond the rocks and roots. Like all the independent clean-up and help-Mom tasks Will did in succession this morning while awaiting his school bus. Like Jeff’s trying hard to sequence new steps together to make a different lunch for himself this morning – a bagel with cream cheese – and his success at totally entering the shower independently.

As I beat up on myself for spending an hour watching a dumb movie rerun last night instead of working – I can think about how every once in a while – we – even I – do something right – like starting our hiking club, and knowing I helped others get beyond their ability to the brighter, longer horizon.

Meet Moose – short for Moosilauke. She’s named after one of the best mountains in the Whites, and has a penchant for water, mud, being in motion, and just being who she is, proudly. Moose’s mom Jes was someone I met at the NH Four Thousand Foot Club awards dinner last year. We’d both hiked the 48K’s and were there receiving our certificates. After the slide presentation where some of our narrative was shared she came up to me and said that as a special needs teacher working with autistic kids, she knew what an accomplishment it was for our guys to be there. We promptly became FB friends and now a year or so later, decided to hike Mt. Ellen in VT together.

What a dog can teach us!

Both Will and Jeff rather dislike animals, including dogs. Jes asked in advance if I minded if she brought her dog, and I didn’t want to say no. Firstly because it seemed rude, but also because it seemed like an opportunity to stretch the boys’ tolerance level. Will really has taken up offers from neighbors to pet their dogs lately and at age 21 it’s time they work to get over some of these remnants of jumpy dogs from their childhood.

Moose set off at a blistering pace despite the high humidity of the day. Jes also didn’t seem to be even breaking a sweat and was cheerfully right there with the dog while chatting away as if she wasn’t even breathing hard. It was fascinating getting to know her and hear about her students as well as her own family. With sassy hair and a smile that was as wide as Vermont itself, she was so full of life and so different from most people in my world. I’m so used to hiking with just the hubby for conversation that having a talking traveling companion – beside the boys’ occasional requests -is a rare treat. She’s also got a wonderful Vermont earthiness to her that when Jeff in particular did his let’s-pee-at-every-corner bit I didn’t have to feel super wigged-out. But after about 15 min I was panting and realized I needed to either step it up in a big way, or show I needed to go slower which I hate-hate-hate because it makes me feel old-old-old.

Meanwhile the boys were completely fine with a dog in the party. Jeff wasn’t into Moose but he seemed to be loving the quicker pace the dog set. Other than a very occasional nose into running stream, Moose was charging up that hill, and Jeff was right there with him. Will was lagging behind a bit on the ascent, though not flopping -just keeping his distance and more probably, just not highly motivated in the heat.

Because my knee was bothering me way more than usual on ascent, as much as I hated it, I had to slow down and allow Jeff to hang out near the top of the party with Jes, and get over my feeling that to be a good mom I need to be hovering (is that a helicopter I hear?) a little closer to him. Even with that our group did the tough part of the climb really quickly, covering 2.4 mi in 1:20 min, a really nice pace. We then continued on for another 1.8 to the summit, where the dog had to do more tough stuff of scrambling up taller ledges which had to have been harder. But she was a trooper like the rest, and the closer pace made it easier to continue the chat more.

Soon people were telling us we were almost there, and then – we were! I knew the summit was wooded/no views but didn’t expect it to be so close to the ski lift platform, where the ribbon of the Long Trail mountains stretched beyond the horizons. We basked in the mostly-sun for over an hour. When it was time for pictures I thought I heard Julie Andrews crooning “The Hills are Alive…..” although then again it was probably my heart doing the singing. That’s always what I feel when the reward of a view displays itself to me.

Moose also had a fabulous hike. She loved the other dogs and all the attention from friendly fellow hikers, most of which identified themselves as dog people. Jes said she thought the dog was aware that on descent I was going way slower, that the boys at that time decided to hang back with me and so the dog almost had a radar for “where are these others?” which is interesting. The initial to mid-part of the descent over the steeper part was really hard on my sore knee, and as old as it made me feel, I really had to slow down. But a little over midway the grade lessened and I loved being in earshot of Jes enough to enjoy the conversation.

My takeaways for the day:
1) If you don’t try, you don’t grow. The boys were completely fine with the dog and what’s more, maybe they’ll be even better the next time – less imposing the distance.
2) Teachers make the best hiking companions. This is the 2nd time I’ve hiked with a fellow autism teacher. I return to normal life with more rounded viewpoints. The winner for the day for me was Jes’ remark that so much of our kids’ lives are choreographed. There’s a separate blog post in that. I continually worry about balancing my desire to super-structure the boys’ life, because it indeed has helped them over these many years, with the real limits on my own time/abilities, and more importantly their becoming adults merits more self-determination. Who gives a wahoo if Jeff wants to repeat nonsense words and Will wants to sing Jingle Bells in July at the grocery store. I mean really.
3) I am not invincible. And I hate it. Then again, does Moose the dog know she needs her master, and that she’s loved, and her non-invincibleness is OK?
4) People need to be more like dogs. I’m not an animal person and it’s been years since my mother had dogs in our house. But Moose was just who she was, and that was 120% OK. Maybe that’s enough for Jeff and Will, and, by extension, even for me. We all brought our unique bundle of assets and challenges into the woods, carried them up, and summited while hopefully toss some of the baggage into the winds – baggage like perfectionism, and self-doubt, and trying to do it all.

I watched Moose return to her favorite little stream of the day upon descent, and indulge herself in a little snout-dipping as the paws dug and water splashed in excited shivers of delight. How priceless. That we can all do the same today.

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.

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.

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?

“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 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!

We 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.

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.