Category Archives: Uncategorized

Lingering, as lights fade

xmas tree lights only 011016
I hate putting away the Xmas tree. After an hour of doing it solo while the hubby works and the boys amuse themselves with nearby computer and video I although time’s up,I fear – I’m letting the mind wander to that other transition I fear, and that’s my most important priority for a while.

Transition to adult services. Here at day 72 prior to the boys’ 22n birthday, as rain makes me introspective – I want the sparkle, the trees and the sense that life is one big present to stay, just a little longer. I want to treat my guys as special, not disabled. To consider their growth as education, not service – as is the name of what they’ll receive to replace their IEP. To care for the cultivation of their ability to contribute to society every bit as much as in the 21 years before this day.

Who said adults don’t learn? I certainly do, and hope we all do.

But for now, for today – let there be just one more twinkling light – one delight over a skill I didn’t know they knew – a nibble of candy that was forgotten – another hug and I love you. When the boxes go back in the attic, let me focus on a rearranged room, freed up with space for more and different furniture – a new kind of living area for opportunities that are themselves gifts.

30 Days of Thanks-Giving – Nov 1: Family

Grateful tree 50PERCENT

Years ago our church gave kids a Grateful Tree for the Thanksgiving season. They dutifully complied but I loved it – still do. Here’s my leaves on the tree.

Today, first and foremost, I’m grateful for my family. My kids, because they shaped me. The hubby, for all his many kindnesses and partnership on the journey. My mother, for tolerating my stream of consciousness brain dumps that make me feel like someone cares. My brothers and sister, for unconditional love.

Their little shows of love are what I cherish the most. How Will really wants to be around me. How Jeff allows me to put ointment on a rash with such acceptance. The nights the hub takes the boys up to bed because I’m busy or tired.

Autism sucks often, but those moments of pure love – would it have been the same, and would I have cherish it, if I was a Normal Mom? whatever that is.

Living creatively – the trick AND the treat

Making lemon out of lemonade – cutting your own path – defining your own rules. Call it what you will, but we special needs parents are amazing at living creatively by carving our own pumpkin, so to speak. We know it’s up to us to make our own rules as best suit our kids. On some days it’s a challenge, but mainly it’s a gift.

Halloween last night brought a few special needs kids to our door, including one where the parents have broken just about every state agency dictum about programming, housing and structuring life for their post-22 year old – and made it work. As always he had a clever costume and boundless enthusiasm for candy, by the fistful. We laughed at memories of our own guys doing this to my chagrin.

Until he arrived I’d held back from taking the boys trick or treating last night. I really wanted to go, for me, for this seasonal ritual where I get to be a parent with pride at my guys and this opportunity to practiced structured conversation and behavior in a ritual that tolerates all. In that they kept answering my 2-option questions that they didn’t want to go, we watched the clock roll til 6:15 and still hadn’t donned costumes.

But after seeing this young man and his dad – Jeff started answering “yes” to trick-or-treating. And so we went, and it was exactly right. While I was still surprised at how much language-prompting I had to do, they behaved well – no bolts into people’s houses to eat their dinner as Will did last year – and Jeff truly seemed to enjoy it.

We may be the oldest trick-or-treaters on the planet, but I was so glad we went. My guys belong. That’s huge to me. They belong here in this neighborhood. They belong in a world with many degrees of completeness of development, sensory issues and peculiarities. They belong in a job landscape where the world needs ‘Helpers’ of all sorts, and my guys clearly help.

Here’s to Sunday church on this rainy non-hiking day, to a yard’s worth of to-do list items, and that beeping alarm on my phone charging downstairs telling me I’m way overdue for whatever. Here’s to the rest of the day made bright by my knowledge – if no one else’s – that it is our creativity that will see us through to wherever adult living takes us.

Open doors – closed doors – and moving on

Change is hard. I’m more aware than ever today with slightly over 4 months before my guys age out of school and into adult services. But I’m celebrating if only for a moment an emerging skill – the ability to open AND CLOSE the basement door as they complete the full chain of school bus entry – get your backpack, put on your coat, open THEN CLOSE the door, and press the garage door opener button.

We’re 2 for 2 today. Baby steps toward the future. Progress measured by any size yardstick is progress all the same.

As I ready them to march out a lot of doors, I want to make this transition thorough – safe – and done right. The adult services world is less daunting right now than all the other stuff, the really scary stuff, like not living with Mommy and having me let go (yikes!) of all those important to me items like flossed teeth and cleanliness. On the one hand, their lives won’t change all that much. Hopefully if funding allows a school bus-looking vehicle will still arrive, transport them somewhere outside the home that’s safe and structured, and occupy them for 6 hours, hopefully meaningfully.

On the other hand – they will not be eligible for a lot of the things we enjoy now, as sanity-savers for me if no one else. Like care support after school and occasional respite. I’m sure there will be plenty of other fights too for health care supports we also now enjoy that may go.

Just beforehand I went for a walk with a dear friend. We ended up somewhere new, an open field with a path cut across a field and over a gently arching footbridge, leading up a sun-drenched hillside dotted by red and yellow and orange trees that cried “I’m happy!” from every branch. “Don’t you just love an open path?” she said.

Yes -I do. 🙂

Autism’s gifts

Mt Abraham mom and men 50PERCENT 10-12-15

What a gift this day was. I can’t stop thinking about this picture, taken yesterday, Columbus Day 2015 from the top of Mt. Abraham, Maine’s 2nd highest peak. Firstly it’s rare the boys are actually looking at the camera, so thank you iPhone IoS burst feature and the husband who found it. Second the weather was just amazing, almost as gorgeous as the day the boys’ sister was born some 24 years ago last week. But most of all, because this picture is my talisman for the days like today when it’s all work, or rain, or the clouds obscure the way.

Autism gave me the mountains, which I always loved but thanks to the boys, they’ve loved me back.

Autism gave me a different trail than my other kind of exceptional child. The autism trail is rocky, hard and long, like the talus field we crossed made of the kind of rocks we sit upon in the picture, only smaller – for a half-mile of it. You look up at the steepness and say, My God. – But like yesterday and like this picture, some days the rewards bathe you like warm sunlight – and somehow the road isn’t as daunting as you feared. Those days more than make up for the ones where you had to turn back, or you swore at the universe as you bit your lip til it bled, or wondered why this curse was foisted on you. In those gifts of a moment, you meet your goal, and that’s great – but the best part is that you know you’re the master of the trail, and not vice-versa.

Most of all autism gave me these young men – these glorious, challenged but exceptional young men. No they aren’t destined for Harvard since they can’t read. They may struggle enough to butter their toast or orient their shirt front and back. But the joy in those smiles above fills the skies, and all who are sensitive enough to see, and feel what is radiating from my guys. It’s pure love. I like to believe it’s love for me, and I think it is, but I think it’s also the joy of slogging through the metaphoric trees of life and emerging above treeline (Will’s favorite) to the reward you earned, and thoroughly savor. For kids of this profile, so much of everyday living is just such hard work. Bursting into the bright beyond is so energizing. The knowledge that you can do it, whatever “it” may be, is almost as powerful as the tectonic force that created those mountains. And it’s as limitless as the skies.

Perhaps that’s the best gift of all -not only the love they bring to me, but the capacity they can bring to the great beyond. We sat seemingly on top of the world this day, and felt the mountain magic as the foliage lit the trees on fire. In reality – perhaps it is us, creating that fire.

The Last, First and Best Day -of School, and More

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.

When Stressed, Remember The Long View

Wachusett view from DP RESIZED 40pct

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.

A Dog’s Lessons On Autism

Moose the dog

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.

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.