Susan's Blog

Tuesday, August 31, 2021

Dancing With My Mom

If you’ve been following me for a while, you know that I started bellydancing in June of 2006. Recently I got my 82 year old mother to try it! This is the story, run by my alumni mag the Pennsylvania Gazette. Enjoy!

Saturday, August 28, 2021

Nat Taught Me How To Garden In Peace

My August piece in Psychology Today is about accommodations on a personal, down-to-earth level. In other words, Nat taught me how to garden in peace.

Sunday, July 25, 2021

Creating a Sustainable Life in Autism Adulthood Parts 1 and 2

Please enjoy my July 2021 Psychology Today piece. I’m hoping to do a series covering a few different ways that we are preparing for the future when we are no longer able to be Nat’s guardians. We are slowly breaking in Nat’s two younger brothers, Max and Ben, to the concepts of SSI, ISP, group home life and day program happenings, which I’ve covered here, in Psychology Today June 2021. I’m also recording other strategies I have found helpful, to come.

Tuesday, June 29, 2021

Preparing Adult Children Emotionally for Their Future as Autism Sibling Guardians

My June 2021 column for Psychology Today is the first of a forthcoming series where I describe the process of getting my two younger and neurotypical-ish sons, Max and Ben, prepared for the future as Nat’s guardians. What will it entail? How did we discuss it? You can read about it here.

Thursday, May 20, 2021

Autism and Lockdown as Rebirth

I hope you enjoy my May column for Psychology Today, about how Nat’s arrival in my life functioned as a rebirth for me. Then, living with Nat as an adult during the Covid Lockdown caused me to recreate my life yet again.

Monday, May 3, 2021

That Night I Smoked Weed With Nat

Please enjoy my latest piece in Psychology Today! I’ll try to blog more from now on!

Tuesday, November 17, 2020

The Ancient Appeal of the Firepit

Please enjoy my latest piece in Pyschology Today, about the appeal of the firepit during the Covid era, especially to a nerdy little family like mine.

Sunday, September 20, 2020

How to Just Bee

If I had to come back as an insect, I’d want to be a bee. Imagine having your nose stuck deep inside flowers all day and then coming home and making honey. On summer days I’m a human bee. I’m working in my garden as much as I possibly can — despite a little arthritis, the threat of ticks, and poison ivy.

Most people love my garden when they pass by walking with their masks and their dogs. Most of them also say that they couldn’t do it — they cite reasons like black thumb or too much work — but I wish they’d rethink that. Gardens are good for the soul and good for the planet. If people would put work and money into a garden the way they do their lawns, we’d have more color and scent in the world, and we’d be creating whole worlds for other creatures. Gardens don’t take that much water if you plant wisely and according to your region. Grass on the other hand takes tons of water and lots of killing equipment like so-called fertilizer or weed poison or gasoline-powered lawn mowers. Grass looks great, though, like a beautiful outdoor carpet, and you can play on it, and sit on it, and if that’s your thing, go for it. Creating a garden, on the other hand, is building a paradise.

Let there be light. You need light to have a gorgeous perennial garden. Sure, you can build beauty with shade but it’s the full sun guys that hold my heart. I try to figure out my exposure and observe when the sun arrives and when it departs. You need at least 6 hours of baking, unfiltered sunlight. Some people say 8 but you can cheat a little with 6.

Play in the dirt. To have a great garden, you must consign yourself to a day or two a week of being really sweaty and dirty. Apply sunscreen, Off, hat, and gloves, and then get in there and dig up whatever grass or weeds you have. You can get this tool: You jam it in and then slide it under the grass like a tough piece of pie and you pull out the layer of sod. There’s going to be a lot of sod so think of a way to dispose of it, or a place to use it. I throw it far under shrubs and forget about it.

Imagine you’re a plant. You live the best kind of life, with your face in the sun and the world at your feet. What kind of home would you need? Lots of tasty soil. So if you notice your soil is tight and crumbly, think about how to make it soft and frothy. Imagine your toes are roots, stretching out into a soft bed. (There’s a reason they’re called flower beds.) Once you have a roughed up patch of dirt you can add in shovels of fertilizer. Oddly enough it is shit that one animal doesn’t need that creates the feed for other life. I like Coast of Maine with the lobster in it but you can use any combination of manure and decomposed matter. Not mulch. Manure, please. Then churn it all together like brownie mix.

Play in the nursery. I go to a small urban nursery that designs its layout like gardens, complete with three-foot-long windchimes that sound like symphonies, and old tree stumps and carved urns and flowing fountains. I wander the full sun aisles and just look and smell and touch. And read. Read those labels, consider all the information like required sun, height, color, and bloomtime. Here is my cheat sheet that tells you about the last three.

Your perspective is everything. I mean, literally, your point of view. How will you be seeing your garden most often, where do you sit and look at it? From what angle will you appreciate it? The thing is, no matter how much we want to see all of it from anywhere, we will only be able to see all of it from one place. But that’s the magic of a garden: most of the time you can’t see it all, so you want to enter it and see the rest. So it is your viewing spot that determines the layout. You want the tallest to be farthest away. Or do you? If your favorite flowers are the tallest, put them in the center! Just know that whatever is behind them will not be visible if they bloom at the same time. So find a way to see them all. Maybe it’s just a flash of orange echinacea peeking out to the side of your bold blue delphinium. Make every color and every spot in the garden count.

The March of the Flowers

Here is the sacred order of the flowers. Use this list as a way of putting your garden together. I’ve listed bloom times, colors, and most of the heights. Your work here is to figure out how much sun you have because these are mostly full sun. Every now and then a supposedly sun-loving plant will survive (gasping and leggy) in partial sun but it’s no fun for either of you.

Now go forth and garden.

March

1) crocus 2) snowcaps (white) 3) scylla sibirica (blue, low-growing, spreads beautifully) 4) hyacinth 5) forsythia 6) heath (piney flowering low shrub that spreads)


April 

1) Bulbs like daffodils, and tulips 2) Vinca (low-growing ground cover with purple flowers) 3) Flowering trees like cherry, dogwood and apple, rhodadendron, azalea 4) Lily of the Valley


May

1) Peonies 2-3′ 2) Poppies 2-3′ 3) Primrose 1’4) Iris 2′ 5) Clematis, wisteria -vines. Be careful with wisteria, it is really invasive 6) Herbs – generally low, good for edging 7) Scented geranium – 6 inches to 1’ These are not the annual geraniums you see everywhere in pots – purple and pink 8) Scotch Broom – big shrub, red or yellow 9) Thrift (pink, marble-size, low-growing) 10) Cerastium, aka Snow-in-summer, white on silvery green stems, covers my stone wall by my driveway, spreads like crazy) 11) Lupine, 1-2’ purple 12) Columbine (1-2’ pink, yellow, blue, tolerates a little shade)


June

1) All sorts of roses 2) Delphinium (2-5’ tall, stunning blues to mauve to white) 3) Pinks, carnation ( 6” to 1’, pinks, purples, fuchsia) 4) Coreopsis (1’, yellow) 5) Scabiosa (6” – 1’, periwinkle blue) 6) Lillies (Asiatic, tall, 2-4’ all colors, smell great) 7) Lavender 1-2’) 8) Catmint (1-2’) blue-lavender 9) Rose campion (1-2’, magenta on silvery stems with soft fuzzy leaves) 10) Foxglove, (tall, white, pale yellow and especially purple-pink, is finicky but magnificent) 11) Penstemmon (6”-1’ orangey red) 12) Daylillies (1’-2’, yellow, orange, red) 13) Hydrangea shrub grows big, mostly in blues 14) Sage 1’-2’ usually pale blue or purple 15)Baptisia, 2-3’ blue or dark dark purple 16) Honeysuckle


July

1) Butterfly bush (large silvery green 2) Echinacea – (1-2’, orange, pink) 3) Black-eyed Susans (1-2’) 4) Monarda aka Bee Balm, (2-3’ red or purple) 5) Hydrangea shrubby tree, goes white-to-pink 6) Hyssop ( 3’ blue-purple) 7) Hollyhock (3-5’ lots of colors)

August

1) Asters (Tall, purple or fuschia) 2) Daisies (2-3’) 3) Butterfly weed (orange) , 6″ 4) Tall phlox

September

1) mums, ugh 2) Bridal Bower Clematis (white) 3) Annuals (cheating but what can you do, it’s fall) 4) Shasta Daisies (tall, white, thick and green for the whole summer) Also, they smell kinda bad 5) Perennial verbena 6) Heliopsis (yellow sunflower types)

Saturday, August 29, 2020

Playing With My Autistic Son

At 57, I’m finally the mother I wanted to be. Read about it here, in my latest blogpost for Psychology Today.

Monday, August 3, 2020

Autism Vacation: Not Quite a Piece of Cake

Here is my latest piece for Psychology Today, “Autism Vacation: Not Quite a Piece of Cake.” Enjoy!

Tuesday, June 16, 2020

Connection and Autism: It May Not Be What You Think

You can read my June 2020 Psychology Today column here.

Monday, May 18, 2020

Susie’s Little Day Program

I was caught off guard by the Coronavirus just like everyone else. I look back now in horror at all the times I sat right next to people — even a sneezing guy on an airplane — and wandered around blithely without a mask. At the beginning of March, though, it all changed. I was picking Nat up from his day program on a Thursday for a doctor’s appointment, but while waiting for him to collect his things, I noticed how few people were in the room, and how few vans there were outside. I asked Paul, his dear friend and case manager, and Paul said that people were not coming in because of the virus.

Suddenly it was real in a stomach ache kind of way. What the hell was I thinking, sending Nat in every day when this new bug was actually killing more people than the flu? “Nat,” I said to him in the car, “You are not going back there for a while.” And I explained to him about the “sickness” that was very bad, and how we had to be really careful from now on. I told him that he would not be going back to his group home for a while either.

Nat was okay with it, and so was I, because we did not realize how the quarantine would stretch on and on. So for the first week it was all kind of like a sleepy vacation, and my husband Ned was working from home, so we just kind of “sweetied around” as Ned calls it. There was no schedule at all; I went on bike rides and cleaned up my yard, uncovering green shoots everywhere, imagining the colors that would soon be popping out of all the trees and the ground. Nat and I rediscovered our love for baking, and I was proud of myself for being able to stay away from the sweets and continue my long streak of success on Weight Watchers.

At some point, towards the end of March, I got bored and therefore grumpy. Ned was now comfortably into his work-from-home routine and so he was much less available for playing. And Nat, sensing the staleness in the air, suddenly started saying, “Go home.”

He meant his group home. He also began asking about his day program. I felt brittle and resentful of the whole arrangement, and Nat became anxious one day on a walk in the Arboretum. For the first time in almost a year, he was smashing his feet on the pavement, jumping high, and smacking his head. “Calendar, calendar!” he shouted.

We always had made him calendars when he was home on the weekend, but what could we do now? Monday: Wake up, Eat breakfast. Sit around. Get bored. Snack. Laundry. Dishwasher. Sit around. Lunch. Sit around. “No calendar,” he said when he looked at the week that yawned before him.

My irritation grew by the day, even though I was bellydancing (yes, I do that, shut up), playing guitar, and riding my bike. I got a medical marijuana card because I was so stressed out. Every time I looked at Nat, sitting so still, almost disappearing, I would feel the indigestion of guilt gurgling in my chest. As March slid into April, Nat began saying, “May,” meaning, “in May I’ll go back to the group home and day program.”

I said, “I hope so,” but I knew it would not happen in May.

What we needed was a day program. Well, good luck with that.

But — maybe? I created a list of activities that Nat liked, and told him to choose some for each day. He did it one day, but then refused. When I finally got him to articulate one thing he wanted to do, it was baking. Always baking. Before I knew it, I was going back in time, into behavioral training. I would use the baking as a way to get him to do other things.

But Nat would see right through me. He’d look at me with my perfect list of choices and his eyes would say, “Really? This is how you want to play it?”

So we would bake. And drive in the car to nowhere. And bake. And before long I noticed that Nat had a tiny little belly smooshed over his belt — something I never thought I’d see. “Well we can’t not bake,” I said to Ned. “So we’ll walk,” said Ned.

And they did. Long walks deep into Boston, avoiding crowded parks and their Covid-scented air. Ned would come back drenched in sweat, Nat would look like he’d just woken up from a refreshing nap. Soon Ned began relishing his job of plotting 4-5 mile walks. He had several requirements: avoid crowds; go for a long time; try to find new destinations each time; find a good podcast to listen to (no illustions here about chit-chatting with Nat for an hour of walking).

They’d be gone long enough for me to escape into something, usually dance or heavy gardening, my other joy. Seriously, the dirtier, the better. I’d have my break and they’d have exercise and an activity they both enjoyed. We could not get over the fact that Nat no longer insisted on the destination being ice cream as in the pre-Covid era. He wanted to go on the walk because he needed something to do and he felt good doing it. And it was his thing to do with his dad.

Then they’d come back and I’d give Nat (and me) an early lunch. I’d think petulantly, “Dammit, I don’t want to bake, why do I always have to bake,” and then I’d hear myself saying, “Nat, do you want to bake?”

We’d get out Mom’s Big Book of Baking, and pick out a recipe. It would have to be something we both liked because, well, Weight Watchers was stressing me out and the priority was filling Nat’s days and being happy with what we had. Still, most of the time I managed to get away with licking my fingers and eating only one cookie.

After the baking I would feel so proud of myself, and of Nat, who was very skilled at baking. From careful measuring to setting timers and temperatures to separating eggs, he was game for everything. At first he did not get why we were using so many bowls and taking so many steps to bake a cake. “Buy mix,” he said at first. “Nat, trust me,” I said, “You are going to love making a cake the real way.” And of course I was right. By May we were experts at making half batches of everything, half layer cakes, half peanut butter cookies, half of the fudge. Because I still needed us to survive this self-isolation and not acquire Type 2 Diabetes.

Then, the Zoom period of quarantine started, and soon we had choices of people to “see.” We did a Passover seder on Zoom (that was no more hectic than our usual seder). Then the day program started sending out links for hang-outs, or we’d facetime with grandparents, or have a music lesson with his rock band director. Suddenly I could actually develop a calendar that did not piss Nat off, because there’d be 10am Morning Meeting, 1pm Arts and Crafts, 5pm MUSE (the rock band gang) hang-out. And woven throughout were the walk and the bake.

We’d still have occasional discussions about when he’d be going back to his real life, and I found I could reason with him by describing what re-opening things would be like. He listened carefully, sometimes even smiling when I got really detailed about all the little changes that would have to be made outside, like masks and tests and smaller crowds. Now that it’s May he says, “June,” for when he’d like to go back, and I say, “Probably.” But I no longer feel anxious about what if it doesn’t happen in June. Because I know we got this.

Monday, March 30, 2020

Quarantined: Spending Time With My Adult Autistic Son

I hope you enjoy this new post I wrote for Psychology Today. It’s been quite a time staying home with Nat these three weeks!

Monday, February 17, 2020

Special Needs Voting Social Story

VOTING IS REALLY IMPORTANT.

HERE’S HOW TO DO IT

Copyright 10/25/18 by Susan Senator

All rights reserved

ALL ABOUT VOTING

  1. Voting is making choices. Voting is a wonderful thing to do if you are grown up. Voting is VERY IMPORTANT FOR ANYONE LIVING IN THE UNITED STATES.
  2. The choices are for different people who want to be in charge of the rules we follow. These are called Elected Officials.
  3. The choices on the voting form are also for some rules that all people must follow. These are called Questions.

WHAT WILL HAPPEN AT THE VOTING PLACE?

We go into the building. At the first table, ____________ says his name SLOWLY and clearly

_____________________ says his address SLOWLY and clearly

_____________________ takes the paper ballot and goes into a booth

________________relaxes and takes a deep breath. _____________moves calmly and SLOWLY.

________________uses the pen to color in ONLY ONE CIRCLE: That is how you vote!

WHAT IS ON THE BALLOT TODAY?

People who want to be in charge of [your state], and also Rules for us to follow.

__________________ is probably a DEMOCRAT/REPUBLICAN/INDEPENDENT because: ______________________________________________________________________________________

[Note: I believe a guardian/parent/friend can guide the individual the way you would guide anyone who asks. Do not be ashamed to advise voting for the party that is in the individual’s best interest. Here is an example: Nat likes living in an apartment and going to his day program. DEMOCRATS believe this is a good thing and they spend money on it. So Nat should vote ALL DEMOCRAT because Democrats make those kind of rules and spend money on those kind of things.]

______’s family are all ________________.

What are you going to be? Republican or Democrat?

[Note: Again, it is very typical for individuals to want to know how their parents and families vote, and for parents to guide them thus. In Nat’s case, it is the Democrats who will preserve the funding for his programs, for the life he lives.]

____________________________________________can color in a circle for each new box:

  1. Candidate 1 believes that _____________________________________________________.

[Note: Make a one sentence statement that would make sense and sums it up in a way relevant to the individual.] For example: Elizabeth Warren makes rules that allow Nat to live in his own apartment. Geoff Diehl would take that rule away.]

Fill in just one!

2. Jay Gonzalez/Palfrey Democrat OR Charlie Baker/Polito Republican

Ballot Questions. There are 3 Ballot Questions. Color in one circle for each.

Question 1 is about nurses who work in hospitals. Hospitals need to hire more

nurses, or do hospitals need to make nurses work harder to help every patient in need, even if it is hard for the nurse?

Question 2 is about making elections more fair for people with less money. Or should people with more money be allowed to spend a lot of money to become a leader.

Question 3 is about protecting all people letting them eat where they want, go to movies they want, use bathrooms in restaurants.

That’s it! Put the paper in the slot of the machine! You did it!

Friday, January 31, 2020

Nat Solves the Autism Puzzle Piece

I give you my latest column for Psychology Today. Enjoy!

 

Monday, December 23, 2019

More About GHOST

While on my bike ride the other day, I had a revelation about how to begin implementing GHOST, which I first described in Psychology Today. First I came up with what the acronym means: G.H.O.S.T: Group Home Oversight & Support Team. The way it would work is, the parents and guardians of group home residents swear an alliance of the soul with each other and vow to check in on the others’ child in the parent’s absence/death. Weekly visits. And if you can’t, you must get someone else who gives a shit to do it in your place. I don’t know what the incentive would be since we don’t all have trust funds for our guys. Is saving/enriching a life enough motivation? In effect our group home peer families become “Ghosts” for us?

G.H.O.S.T. FORM (Group Home Oversight and Support Team)

 

Loved One’s Name____________________________________________________

Ghost’s Name________________________________________________________

Date______________________________________

Date of Last Visit____________________________

 

  • What was the overall demeanor of _________________________________?
  • If you looked in his room, what was its condition?
  • What was your interaction with the loved one like?
Friday, December 13, 2019

Change Vs. Accept? Read My Latest For Psychology Today

How much should we autism parents struggle to “change” our children’s behavior, to channel it to more “normal” pursuits? Are we stifling the real person by doing so? You can read the piece here.

Wednesday, December 4, 2019

I’m Offering A Writing Workshop Online

The process for producing a publishable piece: Nailing the essay-length work

This two-part class will give you the basic tools for crafting opeds, personal narrative, book proposals, pitch letters, beginning memoirs. You will also have opportunity for peer review and one free session of my editing. 2 Saturday mornings in January, TBD

DAY ONE

  1. Overview: The essay, what it is used for:
  • Pitch letters
  • Opeds
  • Summary of book for an agent
  • Persuasion

 

  1. The three most important goals for an essay
  • To catch the reader’s eye
  • To get the reader to keep reading
  • To “win,” i.e., to fully convey your point and persuade

 

  1. The nutshell: how do you create perfect essay-length works?
  • Structure
  • Tools, techniques, and strategies
  • Tone
  • Understanding your reader

****Break****

  1. The bricks and mortar: structuring your piece
  • Lede
  • Background
  • Active story
  • Falling action
  • Kicker

 

  1. Let’s talk about tools, techniques, and strategies

 

  1. Learning from others: read and write the type of essay you are aiming for.
  • Best ledes:
  • B. White
  • Brent Staples
  • Maya Angelou
  • Opening of Glass Castle
  • Best kickers:
  • Joyful Noise
  • NY Times pieces

 

  • Assignment#1: Read the essays. Analyze two of these essays for next time: structure & techniques, with examples. Critique the pair: are there problems?
  • Assignment #2: Write out your idea(s) for next time.

 

The process for producing a publishable piece: Nailing the essay-length work

DAY TWO

 

  1. What is your idea?
  • Sometimes there is more than one essay within your essay
  • Current topics
  • Evergreen topics

 

  1. What is your angle? Is it special and new, shocking, revelatory, solution-oriented?

 

  1. Finding your own process: Outlines, free-writes and brain dumps

 

 

****Break****

 

  1. What techniques will you use?
  • Your favorite techniques
  • Less familiar techniques
  1. Give your work its due
  • Never ever believe your first draft is THE ONE
  • Put it away, print it out, try not to edit online
  • Get a reliable reader

 

  1. Read-around/peer review

 

  1. Wrap-up

 

  1. Feedback

Cost is $150 for both days, or $100 for one day.

January 4 9am-12pm EST and January 11 9am-12pm EST

Contact me for registration details.

Saturday, November 30, 2019

Psychology Today: The Near Impossibility of Family Balance

Here is my latest post for Psychology Today. Enjoy!

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