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Posts Tagged ‘love’

a mile of time

Posted in Uncategorized, tagged , , , , on January 16, 2026| 5 Comments »

Jonah will be moving to his new group home in Ballston Spa on Thursday, January 22, 2026. He’s learned and lived at the Anderson Center for Autism since August 16, 2011, which is a total of 5,273 days.

A mile, interestingly enough, is almost the same exact number (5,280) of feet.

And so it’s been a mile of time.

A mile of memories, some of which I relish and some I’d give anything to forget. Mostly I feel so grateful to the Anderson Center for Autism and all the teachers, direct care workers, administrators, therapists, groundskeepers, cafeteria workers, doctors, nurses, med drivers…all of the people who have worked and loved and taught and cared for Jonah for nearly 15 years.

I’m having such a hard time with this move. Intellectually I understand the good of it, the necessity of the process, the change to this new life where he’ll be closer to me and to his dad and, ideally, a more integrated member of his community.

I don’t know what’s happening in me but honestly I simply struggle through the days, picking at my hangnails until my fingers are a shredded mess, breathing shallow, shaking, scared, distracting myself, staving off my feelings, taking long, cold walks in the mornings down the road to feel the air. I have a terrible time falling into sleep, and when I do I have nightmares of police and ambulances and sometimes monsters at the new house, of Jonah in the hospital or a psych ward somewhere, desperate and sobbing, lost in a new world he doesn’t understand. I lurch awake and feel it all just as if I’m him. I lie in the dark and chant Our Fathers and attempt to calm myself with music or audio books or sometimes klonopin. I tell myself it will be okay and other people tell me it will be okay but I just don’t believe it. I wish I could believe it. I hope I will come to believe it. I wish I knew how to calm the fuck down.

I did everything I could think of to make his transition successful – brought him up to visit three times, talked to other parents and OPWDD and the transition team, bought sensory toys, a blanket, new headphones, a weighted stuffed animal, some bongos, a big train decal for his wall, etc. Briana made a social story and a laminated calendar where she and Jonah mark a giant X through his last days there, counting down and talking about his exciting move to a new home.

She’s also putting together a big party for Boo the day before he leaves, so I’ll drive down and be there for that, stay overnight, and pick him up in the morning. She’ll come with us on the ride and to the house, where we can help set up his room and spend a little time before we leave him there. We will leave him there and we will drive away and somehow this will be the way it begins, his future. Dear God please don’t let him cry. Please don’t let him try to follow us out. Please don’t let him be afraid. I have such traumatic memories from the day we brought him to Anderson all those years ago, little Boo in the back seat of the car perceiving something huge, crying Home? Home? as we drive him farther and farther away.

I took Thursday the 22nd and the next day off from both my jobs but I’m so uncertain about how much to be present, how much time to spend with him in the beginning. There’s no guidebook for this, no manual. I don’t want to be overinvolved or smothering, and I don’t want to squash his independence, but all these questions push at me. Will he be able to sleep? Will he poop and smear it everywhere? What if they don’t understand him when he asks for something? What if he weeps in despair? What if they’re not nice to him? What if he attacks the staff, or tries to run off, or smashes a window, or hurts himself?

After all the loss and grief this year, through all of it I couldn’t cry or feel my feelings at all, steel spined and dry eyed at the funerals, but I sure am crying now. The tears rise, and they fall, and my eyes fill again and again, and it’s good in a way to finally have it happen, to have a human reaction to something sad. Is this ridiculous? Am I catastrophizing? I don’t know and I can’t help it so does it even really matter?

Today I took a mental health day because I can’t talk or think or do anything but write this and when I’m done writing this I’ll lay on the couch and watch Little House and try not to think about anything at all.

It will be so good if I can not think about anything at all.

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the art of losing

Posted in Anderson School, autism, Elizabeth Bishop, music, Rock Voices, Uncategorized, tagged , , , , on September 27, 2025| 6 Comments »

I don’t have a lot to say, and I have too much to say, and I’m sick, and I’m sick of myself – and so very tired of this messed up year. There’s no news about Jonah’s move. We don’t even have a transition plan yet, or a caseworker. At least Andy and I were able to tour the house and see Jonah’s bedroom and the space where he’ll be living. A month ago they told us the house would be open in 6 weeks but I’m not sure what that means for Boo. We wanted him to be one of the first to move in and I need to contact OPWDD to ask for an update. Life keeps getting in the way, though, with challenges and unrelenting loss and sadness.

One bright spot was the annual Dutchess County Fair; for the third year in a row, I met Jonah, his friends, and the staff to enjoy the rides and animals and food. This year we were even able to visit the cows without embarrassing incident. Jonah was content to have his picture taken next to them and mooooove on.

Also, it was a blessedly cool day and we stayed with the group, which made it a lot easier and less stressful. I wish I hadn’t persuaded him to get on the rides, though. As soon as we were settled on the Ferris wheel, he grabbed each of my hands in his and told me “it’s okay. It’s okay. It’s okay.” I smiled at him and said “yes, bunny, it IS okay” – but I felt bad. He bravely endured the brief spin, but after that I didn’t encourage him to ride anything else.

The only ride he seemed to truly enjoy was the bumper cars, both of us in one car so I could brake and help him steer. It will probably be the last time we go to the Dutchess County Fair together. Maybe the Saratoga County Fair next year? We won’t have a group of caregivers to help us, so it may not be possible.

I don’t know what, exactly, will be possible for Boo in this new house, in this new life. He’ll be losing so many people, so many things.

I’ve lost so many people this year, too – and am about to lose yet another, my friend Laurie, who has been through so much suffering and is now nearing the end of her life. I want to call Father Noone to talk about it. I want to call my sister. Ironically, the people I most want to talk to about it are the ones who are dead. I even want to call my mother, now two years gone – “mommy,” I want to cry, like a lost little girl. It’s hard not to keep everyone left at arm’s length in an attempt to prevent the pain of more loss, though I know that’s not the solution.

I think of this poem I read in class during my days as an English major at SUNY Oneonta.

One Art
By Elizabeth Bishop
The art of losing isn’t hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.

Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn’t hard to master.

Then practice losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.

I lost my mother’s watch. And look! my last, or
next-to-last, of three loved houses went.
The art of losing isn’t hard to master.

I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn’t a disaster.

—Even losing you (the joking voice, a gesture
I love) I shan’t have lied. It’s evident
the art of losing’s not too hard to master
though it may look like (Write it!) like disaster.

It does look like disaster right now, and yet I understand what she is saying. I understand it so much more from the perspective of middle age than I did at 20. You reach a point where it all becomes a normalcy. I lost the ability to eat what I want without consequence, then to look 10 years younger without even trying…to look around me and see the same loved ones at every holiday gathering, to count on friends and family being there year after year. To enjoy a certain level of wellness, to depend on an easy bounce-back from injury or illness or sleepless night.

There is no longer the comfortable assumption of a generation between myself and death. Relativity is real, and everything speeds up in direct proportion to one’s age. It’s a humbling thing. My father will be 87 this year, and when I talk to him every morning he tells these truths as well. Most of the friends and relatives from his “silent” generation are gone. He seems to have mastered the art of losing, though I know there are days he struggles to accept it.

As for Boo, I will fight the losing. He’s just 23, a young man with a future I can attempt to fill with all the things he loves. I can do my best to make his life a little better at every turn and through every change. In the meantime I can practice, like Elizabeth Bishop says, “losing farther, losing faster: places and names” – for it won’t let up, not for any of us, and we have to carry on.

I can remove my focus from the losing and place it on gratitude for all the things and people I still have. I can join Rock Voices again, and even though I won’t have my friend Laurie with me, I know she’ll somehow be there with me anyway. I’ll hear her singing and laughing next to me. I know I can. I’ve got to. The alternative is sinking into depression, and that, my friends, is something I really do not want to do.

Have a blessed, beautiful beginning of autumn, everyone. I’ll be back soon!

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lessons and blessings

Posted in Uncategorized, tagged , , , , , , , , on August 21, 2011| 8 Comments »

It’s been almost 6 days since I have seen my boo.  I’ve learned a lot of things in those 6 days – a quick, hard, University of Life experience I never applied for and didn’t want to attend.

In 6 days God created the world, they say.  Well, I did too, in a way.  A new world for me.  And a new world for boo.

My world is now near-free of dread.  I don’t mean the “damn, tomorrow is Monday and I have to go to work” dread.  I mean the dread that lives inside you and owns you.  The kind that makes you steel-stiff & come unglued – the kind that’s unrelenting, ubiquitous – there all at once, all the time, even in your dreams, for whatever the reason. ‘Capital D’ Dread.  It’s gone.  I am not going to randomly show up at work with scratches on my arms & face and I am not going to trudge into LensCrafters again and again with broken glasses to have them repaired by S, who I’ve seen so many times we are almost-friends.  She told me she uses my story at work as an example of what their optional “protection plan” can be like, and for whom it can be downright necessary.

And of, course, no more dread of Jonah going away – of counting weeks, days, clinging to him even as he tries to bite or hit me, longing to keep him at our side.  That dread is gone too, and it’ feels like setting down a load of bricks I’ve been carrying, sharp and hot in the summer sun.

From what Anderson School has told me, Jonah is acclimating well and more quickly than expected.  He adores their playground, their pool, and all his caregivers.  They e-mail, talk to us on the phone, send pictures (here’s another one),

and communicate with compassion and understanding, even though you know their days have to be difficult and tiring at best.  Some have told me how they have already grown to like him a lot.  I am grateful.  How happy he looks in the pictures they send!

And all this support, from everywhere – people I know, people who read my blog, teachers and friends, co-workers and relatives — it is overwhelming and humbling.

A mystery person even left flowers for me and a bottle of water for the flowers on top of my air conditioner outside the apartment:

That was pretty cool.

I miss my boo, but I know I have made it over the mountain.  Jonah will too.  And Andy. I know it.  I feel very blessed.

If I were asked to give advice based on other things I’ve learned quick & hard, I would say:

1) Don’t get all mercenary and clingy with possessions, money, or anything else.  Watch “The Gods Must Be Crazy” (even if you’ve seen it before) and it will remind you why.

2) Everything is impermanent.  True story.

3) Judgment of others is wasteful arrogance, and the judgment almost never assesses its target correctly.

4) Kindness is never a mistake.  When in doubt, be kind.  Choose it every time and you will never be wrong.  Do kindness.  Not just when the opportunity crosses your path.  Practice conscious kindness.  It comes back to you.  Trust me.  In amazing, incredible, miraculous ways -often when you least expect it and most need it.

5) Calm the hell down when driving, running, working, going shopping, dealing with children, people you like and dislike.  Just calm the hell down.  Breathe deeply.  For God’s sake, breathe.

6)  Love.  Love as much and as hard and as completely as you can.  If you have lost someone and still care for them, love them anyway – even if they’ll never know it.  Love the seasons, the cold and the rain as well as the sun and the warmth.  Help someone.  Do something.  Care!  Don’t watch the news and shake your head and say that’s too bad.  Find ways to make a difference, even if it’s just to one person.

Before I get carried away, and I suppose I could type all day, I want to say I have not conquered these lessons – only that I believe them to be true and my goal is to follow them, as much as possible, from now on.

Oh – and one from my dad:

Before you say something to someone, ask yourself if it is true and if it will benefit the other person in any positive way.  If not, don’t say it.

That’s a good one, dad.

My father’s doing volunteer work now; he drives people to the food pantry in a van, which makes me prouder of him than anything else he could do.  He also is letting me live my life and make my own decisions, something which must be difficult for him, because he loves me and doesn’t want to see me hurt.  He has had to trust my smarts and my own judgment, and he’s doing it all while still remaining supportive.

My mom is counting the minutes til we go see her precious grandson – I think we’ll go for a picnic next Saturday with him if it is nice, and Jonah can play on the playground.   She has been an enormous support, especially for Andy, when no one else was.  She has opened her home to Jonah (and whomever is watching him) over and over and over again, withstood a broken TV and other household items, scratches, tantrums, bathwater splashed everywhere, and toys scattered about.  She is a true testament to the love between a grandmother and her grandson.

Andy is proving both courageous and Superdad by moving so close to Jonah, so he can see him (and oversee him) as much as possible.  Although we are separating, I will never choose to remember the bad things.  Only the good – his kind heart and earnest, helpful spirit that always, unfailingly, reaches out to others when they need anything at all.  Here is a man who, quite literally, would give you the shirt off his back, and I will always love him.

I don’t know how this turned into an awards ceremony but if I am going to spend paragraphs giving mom, dad, and Andy kudos, then I certainly cannot forget M – the manwho took so many days off work to be there, with or for me, time and time again…the man who slept between Jonah and me on a cold hard floor at a psychiatric center for three nights just to protect me…the man who drove 40 minutes to visit me every day at yet another psychiatric center, bringing colorfully beautiful flowers when I’d gone suicidal…the man who came with me several times a week for months to help me watch Jonah, taking on the tantrums and scratches and screams of a child not his own…  The one I go places with, read to, watch movies and take long rides and visit the Almanzo Wilder Farm with.

Here are some pictures from when we visited the farm one day this week, just for respite, traveling slowly through the Adirondacks until stepping reverently over the threshold of Laura‘s husband’s childhood home (yes, I am that into them):

Me, grinning under the historical sign

This massive tree is thought to be 200 years old.  Almanzo climbed it!

…and his home, restored.

I have a dozen or more pictures but I mustn’t forget that I can always start a Laura Ingalls Wilder blog and ramble on about her there.

It was a peaceful, pleasant day. Some weird part of me feels like this week off work is over and so not only will I be going back to work but to the Jonah routine too.  This has not really hit me quite yet, I think.  And there are definitely two sides to this coin – loss/pain and relief/freedom.  I hadn’t even thought about the second side, really, in a positive way, but my therapist has helped me with perspective, so finally there is very little associated guilt, which I was full of…thoughts like “I shouldn’t be having a good time since I sent my boy to live in a home.”  No.  We should all be having a good life.  We all deserve to be happy.  Jonah too.  Jonah especially!

Please continue to send good energies and prayers to my little Boo.   (I can’t wait to hug him)!

And once again, my prayer is simply thank you.

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on the upside

Posted in autism, Uncategorized, tagged , , , , , on July 5, 2011| 2 Comments »

“…there is love, there is peace in this world…”

~ Guster

Jonah had lots of fun swimming the other day in a pool whose owners had kindly offered us its use while they went away for the weekend.  He wanted to swim sans suit, so we let him.  It was wonderful; he laughed and played.  What should be common is rare and precious.  Here are some pics, and more I took recently, capturing beauty…breathing it…internalizing the warmth of the sun, the smiles of my son… 

I love to take photos and wish I was 1/100th as good as my cousin D.

he loves to swim along the bottom of the pool

~~~ he is a creature of water ~~~

…which was fun to take pictures of too…

I loved these flowers M delivered to my work, surprising me because I have been so sad – they are even more beautiful now that all the lilies have opened their eyes…

I love this plaque my sweet friend D gave me – my favorite thing to see each day when I wake up.

And I love how many of the trains we see have gorgeous graffiti:

And of course I adore Match Game & Richard Dawson, my campy 70s escape-love.

(Here he’s even promoting my profession).

Every time I get knocked down, I get back up again, damnit.  So far I’m doing it, whatever this is that I’m doing. 

Thank you all for your collective conscious loving energies, prayers, and encouragement.
I am literally powered by it all.  I keep going because you push me gently along…so thank you.

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