Solo, And Yet Never Alone

Special NE67 finishers 50pct 09-22-16

Autism makes us think we walk alone. The universe proves us wrong sometimes.

Look at this beauty of a day, and an accomplishment that made all the mountains sing. Nearly three weeks ago my guys Will and Jeff, and my hubby and I summited the last of New England’s four thousand foot or above peaks – called the NE 67 4K’s list. The feeling of making it to our first major hiking milestone, the New Hampshire 48 4Ks, three years ago despite autism or perhaps because of it, will buoy me for my entire life. Hitting our 67 was even better.

But there was another lesson that made our accomplishment smaller, yet greater – insignificant in a way, and yet so profound it’s still resonating for me today.

As we geared up in the parking lot, Debra approached us and asked to join us on the trek up our last mountain in the NE 67, because she didn’t want to hike alone. Turns out she was in Baxter State Park with a MeetUp group that rather ditched her because she only wanted to hike one peak, not 2 or 3 in a typical loop. Apparently they also preferred a faster pace than hers, and after a few days with her where only a few were willing to go it at someone else’s style, she chose to strike out in hopes of finding other partners on her final 67th hike.

That MeetUp’s loss was our gift. It turns out Debra was a fellow mom of a special child who lived a few towns over. Our paths were a little different – her kiddo has Down’s Syndrome. She achieved her 48’s and 67’s faster than us. OK she hikes and is probably younger and faster too. Our struggles with schools and supports were a little different but so common that chatting our our situations make a boring 3.5 mile ascent fly.

When we finally both hit that summit – there were few moments as sweet.

The message was loud and clear for those like me who don’t believe in coincidence. We’re not alone on the trails of life – even when rocks and roots trip us. Even when fear clutches as we look to some steep ascent ahead and question whether we have what it takes. Even when we think no one else understands.

We lingered at the peak for an hour, about 45 minutes of it taking over 100 photos. I’m not sure the group of 4 neurotypical 20-somethings, or the family of 3 who also summited with us, truly got it. But Debra did. Even if we never cross paths again, the earth, my kids, my companions and everyone around that day are the better for two small little parties of different people, each proving that we may be different – but we are not lost.

Milestones that are so savored become the fire that lights our next journey – especially for parents of special needs kids. Some people turn to Facebook and blogs like this to verbalize their pain with autism-parenthood to let it go. I need to articulate the promise, and the glory – because it’s what makes me believe in the beauty and joy I know around the corner in some other way, and that I hope to feel.

Today’s summit is more about chores, and rehabbing my bum left knee, and smaller scale growth for the guys. Jeff will get to practice attending during this painting job, while I’ll continue to try to both get Will to expand his range of interests, his clothing tolerance, and hopefully take steps to finding more meaningful work roles in the community for him.

My 67th makes me know we can do it. Debra’s presence shows we are an unseen army of the small and mighty, all doing the same.

10 Lessons for Transitioning from School to Adult life for persons with autism

After 3 months post-transition, we’re over the hump of that word everyone fears – transition – and moving on. Here’s my take on essential lessons for individuals with autism – particularly the profound kind – that turn 22 when in the state of MA we shift from school to an adult life.

Media accounts make it seem dire – “the cliff,” it’s called. I roll my eyes now when I read that term, especially now when I’m done with it. No life isn’t perfect. There’s a stunning lack of understanding of autism even in supposedly fine programs, and plenty of gaps with community-based programming and employment. Maybe my analysis would be colored differently if we were in crisis or sitting around watching TV all day until an opening in a program arose.

But there is plenty of growth, goodness and dare we say happiness available on this side of the rainbow.

1. Know them deeply. We all know parents make the best advocates that it’s emphatically the case as you move into advocating – OK, the better word is arguing – for what they need to succeed. Believe in them. They will succeed and so you will you.

2. Decide if you’re seeking residential support, for now. The fundamental decision point at least from my view is whether you want to move toward housing supports outside your home for your loved one. I know advocates who assert that housing is a far more important determinant of happiness than day programming. Many of them are individuals I admire deeply. Yet for me – I just can’t go there yet. It’s a huge leap for me to trust that the many gaps in my sons’ skill sets will be adequately addressed by staff and a system that doesn’t value what I do. Flossing their teeth daily, for example. Choosing to focus on on a day program simplified the task for me. Theoretically if your individual is deemed appropriate for state support, the funding decision on housing and day programs are separate. Bunk, I say. I decidedly felt that by not advocating for residential supports right now, I got what I wanted (mostly) in the boys’ day programming.

3. Get them paying work prior to the transition. Not every individual with autism can work competitively, particularly the profoundly affected. And we are so far away as a world from supporting employment for the disabled. Disgustingly, sadly far away. However having competitive employment under MA’s new “employment first” initiative that values the ability to work even to the point of spending more money to support an individual – is a game-changer. My Jeff works competitively and it was the ticket to IMHO a vastly better day grid. I only wish my Will presented with as readily served skills. Not that I have stopped trying, but securing job coaching and support after the transition is markedly harder, at least in my nascent view of it. It’s like someone has decided he cannot work competitively which is stupid, flawed and one of these absurd binary choices made by a system that overcategorizes, but that’s another riff for later.

4. Make DDS your friend, but know their strengths and weaknesses. Wake-up call to MA residents – we have it vastly better than in most states. The transition process is funded, staffed and by and large, it works if you work it. DDS strengths, from my experience: they genuinely care. They actually do know lots about programming and options. When you make reasonable requests that are in line with your individual’s documented needs and goals, they generally work to support you.

DDS weaknesses – they wait til the last minute. No matter how organized you are, how much you prod and how well you as a parent work the system. It’s maddening, but just set your expectations accordingly because you can’t change it, so railing against it just wastes time although it’s fun to do because all your autism friends relate, too. Funds are not unlimited and when you ask for more than the Medicaid funded ration, there’s a process that throws up roadblocks and that even DDS itself doesn’t understand. Lastly, I’ve observed an undercurrent of “we can’t save everyone” in particularly affected and intractable individuals. Perhaps it’s a remnant of old institutional days and yes, OK, maybe it’s tru. But if you ever see that appear with your individual – please firehose them until they’re publicly shamed. Every human has potential, dammit.

5. Clear your life around the time of the transition. My workload lightened by accident 3 months prior, which I viewed as a cosmic sign and for once, listened. For this over-commitment addict it was one of the best moves I made in recent times. Meetings, paperwork, phone calls to track and prod the process etc – they’ll require time, but more than anything you’ll need to a workable Plan B in place in case there’s a – gasp! – gap. The G word was my most feared going into this. Will and Jeff don’t do well in a lack of structure – they revert to their bad behaviors. So I deferred new work, skipped a trip abroad with my mother timed 4 months after the transition than I know she really wanted me to take with her, and let paperwork and other household things be a distant 2nd priority. It made all the difference to me. Fortunately I had a gap of just 3 days before my guys started their adult program. But I had the emotional reserve available if needed to sustain us until they got to where they needed to go.

6. Celebrate the moment. I threw a Turning 22 party which probably added more busy-ness, but was one of the best things I did. Truly like me, of course I had to schedule every house fixup we needed in the past 20 years ahead of the big soiree. The new ceiling fell down 2 weeks before the main event and the passive-aggressive plasterer kept us on tinterhooks with endless no-shows, and the new 40-lb art piece of a mirror also fell off the wall the night before. But the party was one of those life highlights that carries you through the dark times. I gathered every therapist, teacher, social worker, neighbor, relative and friend I could reach as a thank you and send off into our new life. Amazingly about 60 of them were here as my village celebrated this milestone. The warmth and love sustains me even now. My village joined hands around my family, gave us a hug, and reassured me that there is another village of fabulous friends I haven’t yet met that is awaiting me here on the other shore, if I but open my eyes and see it.

7. Recognize the biggest gap post-transition – free time. No more Monday after-school art class. No more proms, winter dances and movie nights with your class. For many individuals who formerly had some even limited degree of state-funded respite or after-school support, that goes as away too. Suddenly there’s this vast white canvas of time from 3-10 pm each day, and far fewer school-related recreational choices to fill it. Look around and even the most progressive autism related support centers skew their programming toward school-age kids. It’s hard to find programs even open to adults. If your individual’s behavior and attitude disintegrates with too much free time – you’ve got a problem.

Personally I wish I have the answer to this, but I’m still working on it. Blessedly I do have some degree of DDS funding to support some after school engagement but it’s even harder finding staff for adults. Working full-time doesn’t help and I keep getting in the way of my own good intentions to work less, which is a nice to have in some ways but, not really in others. My intention is to start a local walking club for those with autism that does shorter, less aggressive walks nearby as a vehicle to filling this gap. Not decluttered enough in my work life yet.

8. Accept that adult services are viewed differently than your own idea of life-building, and change what you can. Theoretically adult services are supposed to be focused on habilitation. In practice, too often they slip into babysitting mode just keeping individuals safe and somewhat engaged – while defining that term far more liberally than I do. Ostensibly, at a higher level, adult service providers believe they are supposed to be putting programming in place to grow individuals in their care. But old attitudes die hard, particularly with underpaid staff who view involved parents (that’s a euphemism for bitch I suppose) as the enemy.

I will never, ever stop helping Will and Jeff to grow – just as I haven’t stopped in my own life either. Human potential is God given, needs to be fostered and given back to the world. But the system isn’t ready or eager to proceed with the number and pace of goals that I want from it. For today my approach is more of a “changing what I can.” It may be settling, and I reserve the right to edit this post later as I learn more, because it sucks frankly on given days – and it is something I intend to fix, to the extent that I can.

9. Expect both bad and good surprises. Bad, in our house – the behaviors reemerged. Will’s disrobes went up pretty significantly in the 2 months post-transition. He expanded on trashing the drawers in his room and developed an interest in having certain surfaces totally clear and clean, to the tune of throwing away eyeglasses, measuring spoons, parts to air conditioners, and a host of sundry non-trash items left in his line of sight. Jeff’s self-injurious rubbing/blistering himself reared its ugly head and his masturbatory interest when stressed is back. His interests in certain aspects of women’s clothing is downright freaky in public and totally inappropriate especially when combined with a lack of understanding of social space. He no longer wants to have his every minute scheduled and some of the most loving shared passions of ours, like baking cookies with me, have become more sometimes things.

It pains me to write this as I would prefer not to have these behaviors as part of their world.
That said, we’re turning the corner on the disrobes, and working on Jeff’s issues too. Autism sucks sometimes.

The good – both boys have surprised me with their ability to tolerate some larger than planned expanses of unstructured time – AND with their ability to learn. They now are more reliable than not with bathrooming in public restrooms when there is no family bathroom where I can take them. You never saw a happier face than mine standing outside the BJ’s men’s room when the red door swings wide and familiar face emerges with all their clothes on! They surprised me with their ability to accurately ID 3 new WH questions about their day program that i recently instituted – not perfect but better than I thought. While I may not like it when Jeff says No to making cookies, he’s more fully his own person and this is a great thing.

10. Tomorrow is another day. Thank you Scarlett O’Hara for the profound wisdom that we can always start anew – turn the page to beautiful white space awaiting a new story to be scrawled upon it – and work to help our adult loved ones with autism to have a happy and productive life.

Adulthood with autism is not a holding pattern, a chasm or a flat-line EEG readout – unless you let it be. The process of crossing from there to here is time-consuming and may make you sad for the little boys that grew into men, and the ready system we knew. No doubt about it, it’s hard to find helpers and quality, appropriate services for adults like in school days. But they are there. They await you, and once you’re on the other side, on some days when the sun shines, the slower pace of working on schooling, and simply living life to the extent you can – is actually freeing. You, and they, can just get on with the business of living, through sun and rain. Dare I say it – you might even find you all are happy.

Boys to Men

At age 21, my guys are men. And like all good mean it’s time to grow into adult worlds and ways, no matter how developmentally delayed.

Just 54 days left here in the school system. I still have a mountain of paperwork to process tomorrow, several people to track on a key funding decision and meetings that have to be scheduled. But the essentials have worked out better than expected. I’m ready to launch my guys into adulthood – and me, into Adult II, as a book I’m reading suggest.

It’s hard not to be nostalgic at major life events – and I’d categorize this as one. It’s a graduation in all senses. Parents of special needs kids color the transition word in dark hues – as if you’re entering a cave of the unknown and all good and fun ceases. It was that way for me at first I suppose. The very word transition made me cringe. Wouldn’t it be nice to stay here in our little world forever? Singing made-up songs and mixing and stirring cookie dough together. Rushing out into rainstorms so we could jump puddles. Centering our lives around the rhythm of the school bus. Sending the boys off each day to a loving system built to care for their needs.

Traditional adult day programs are kind of like School II. Maybe unconsciously that’s why I chose them instead of some freeform model, but it felt right. The bus (hopefully) will arrive and drive them somewhere for 6 hours where they’re safe, hopefully engaged, and assisted by at least a half-trained staff. Thankfully Jeff will transition his after school bakery job to be his real job, a few hours a day for a few days a week. Will can be a community helper, on one day even at the same church where he likes to stack and carry chairs. I’ll still be their advocate til I drop dead. We’ll have some helpers occasionally after school so I can work a bit – hopefully less – and navigate the doctor’s appointments and all. I’m trying to boost the community engagements since special Olympics and after school art class won’t be there, and we all need community and connection. We’ll still have our weekend hiking jaunts and I doubt they’ll ever be a time the boys won’t grin when I say the word Restaurant.

Our hamlet will remain a source of light and happiness for us all- a place where the love is palpable, and I can still say I love you and give the boys kisses no matter how big and old.

Ah yes, my idyllic Pollyanna world, perhaps. Maybe I’ll have an adult wake-up call, as a friend did when her kid to the ER as an adult and seeing how prestigious hospitals still don’t get autism and how to handle a fearful, ill person with behaviors. I recall a Debbie Downer-type fellow parent relating how dayhab staff would steal money from her son. My dayhab tours certainly revealed plenty of places where staff ignored the residents, as do parents I know and trust. Maybe that will happen to me too. If Jeff’s self-injurious behavior comes back I will cry, and if Will disrobes at the new program I will thwack him upside the head. – Yeah OK it won’t be perfect.

But for now, life is good. The path is set. So far, it’s come together better than I hoped. People I asked for help really came through.- I have new and exciting opportunities for them and for me. And the way seems clear.

That Billy Joel song about “I’ve loved these days” keeps buzzing through my head. I really have.

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.