Saturday, October 2, 2021

Tethered

 


I've realized that there are some ways in which the isolation which came with the pandemic did not feel new to me because for the past 18 years we've been responsible for an eternal toddler who must be watched at all times else he get into all manner of trouble.  This has not meant that we couldn't go out or see people or travel but it has meant that we do much less of these things than many of my friends and neighbors. My husband and I have been tethered by Josh's needs, sensitivities and limitations.  

This photo is from a recent day when we left him alone in the bathroom for just a little too long.  Someone had started him in the tub without putting everything away so Josh poured an extra large jug of Head and Shoulders into the tub and then pushed the jacuzzi jet button.  I walked in to find most of the bathroom filled with a hip high layer of bubbles.  

My first thought was "Oh my God.  We can never leave him alone ever.  I have to give up everything I ever wanted to do outside of this house.  I will never have freedom and independence ever again."  

Woah.  

Where did that come from?  After all, I have a full time job and an office that I can go to even during Covid.  I have the partnership of a wonderful and capable spouse who is currently taking the lead role with Josh.  I now even have two in-house teen aged babysitters who say that they will only charge us "half price" from their usual rates when they babysit other people's kids (actually, they don't really charge us but often insist that we Doordash them something).  

I think that it's triggering for me when we have an incident like this because it exposes my fear; fear that Josh will never grow in independence, fear that something really bad will happen to Josh because we weren't watching him well enough, fear that we will not have a good future because of who Josh is.  

It really is more about the fear of the future because the present is pretty ok.  

What is the antidote for this kind of triggered fear? 

First of all, breathing.  Sit.  Breathe.  Wait.  Keep breathing.  Feel the fear.  Breathe again.  Wait some more.

Secondly, and this is way later after your actual body has calmed down, ask.  Ask yourself what is going on. Ask God to help you.  Ask your body, how it's doing.  I think that slowed down asking is really good.

Finally, wait for grace.  Seriously, grace usually comes when we ask and when we're open.  That grace might be through peace or perspective or a memory or humor.  The grace might come much, much later and it might be really tiny but my life experience tells me that grace does come.  And when you see it or sense it, take it in.  You need it.  You were made for it.  

I did this just now and the new perspective that I received was that I am tethered to Josh but through the lens of grace, I believe that it is a good thing.  Messed up bathrooms can be cleaned but the love and transformation that comes from my relationship with my son will be forever.  



Monday, February 15, 2021

Our Neighborhood Walk


Almost every day since the the pandemic started a year ago, we have been managing being homebound by taking a walk around the neighborhood with Josh and our dog.  On most days it's my husband, the dog and Josh.  Sometimes the girls and I go along.  Today, my sister's whole family and my mother came along, all of us masked and trying to walk with some amount of distance from one another.  

Our neighborhood is generally quite nice with small to mid-sized homes, decently attended yards and old trees overhead.  People express their friendliness by putting out boxes with extra fruit such as lemons or oranges for anyone to take.  We pass three of those "Little Free Libraries" during the course of our walk.  People are friendly in a "look at you and smile" kind of way not a "randomly start to talk to someone you don't know" kind of way.  No one seems to be weirded out by Josh.  

All in all the walk is about 1.1 miles or 6000 steps and takes between 20-30 minutes depending on how slowly Josh is walking.  Josh takes his time, clapping as he goes.  Sometimes he stops to enjoy the sun on his face or to look at a leaf and possibly taste it.  He knows the way but he has to be watched lest he get stalled or decide to eat some inappropriate item.  

It's always the same walk, down the same streets, on the same sidewalks, making turns at the same places. My husband and Josh take great comfort in the sameness of the walk.  To me, for a while, it felt boring and a little mind-numbing.  Why can't we ever explore other parts of the neighborhood?  Must we always go the exact same way?

A therapist friend of mine recently told me that humans find great comfort in routine, especially during times of stress.  This must be true about our walk especially to the more routine-loving members of our family.  Josh is very committed to the exact pattern of our walk.  If I try to walk on the side walk on the other side of the street from what he is used to or to cross the street in a slightly different way, he resists heartily.  He feels very strongly that there is a way to do this walk and it's a very good way . . . not to be messed with.

One time, a mom was coming down the sidewalk toward us herding twin preschoolers each with their own scooters plus she had an infant in a carrier on her front.  I could see even as she was further away that she was going to have a hard time moving to the other side of the street to avoid us.  I tried to get Josh to go around them on the street and he wasn't having it.  The more I insisted, the more Josh got upset and started screaming and hitting himself on the head.  I apologized profusely as we had to pass each other, uncomfortably close given the county health guidelines of remaining 6 feet apart from people who are not in your household.  She didn't say anything back to me, perhaps because her mask was in her hand, but her eyes told me that she understood and wasn't judging us.  

Since that time, we got help from Josh's Orientation and Mobility (O & M) instructor at school to work on having Josh practice going around a parked car in the street every now and then to practice "giving way" on the side walk.  At first Josh did it for goldfish crackers, then just for verbal praise.  Now he can do it whenever we ask him to.  Being flexible with his routine is not his favorite thing but he's gained some amount of elasticity over time.  

I realized today how blessed we are to have our little walk.  Having done it hundreds of times now, it feels like a comforting thing, a chance to notice simple pleasures like fresh air, trees, different flowers that bloom around the homes of our neighbors.  We know which house is being sold and which one is doing some remodeling.  We wonder where the little white dog has gone since we haven't seen him in his backyard for a while.  This routine has made our neighborhood more "ours" and has given Josh a safe way to engage with it.  




Thursday, November 19, 2020

Adventures in COVID Testing

Headphones? Check.

Power Bars? Check.

Chocolates? Check.

I thought I was all set to take Josh to get a COVID test at a local community center.  We are planning to go to a cabin in the mountains over Thanksgiving with my sister's family and my mother so we all decided that we were going to test beforehand.  I talked to it about it the whole time we were driving there, promising him his beloved cheese quesadilla at Taco Bell afterwards.  The strategy was lots of communication, lots of bribing which usually works pretty well. He was in a very good mood and was echoing me eagerly.  

"After the nose test we're getting a quesadilla."

"After the nose test we're getting a quesadilla!"

I should have know that things were going to go south when we stood in line behind a set of nervous preschoolers.  They both started to cry as they moved toward the front of the line and saw the clinical set up inside the community center.  Children crying is kryptonite to my son so he started making anxious noises and putting his fingers in his ears.  

When we finally got up to the table where we were asked to show the QR code for our registration, I was greeted by two very tall, confident Asian men in their early 20s.  Through their PPE I could see that they both had haircuts and tattoos that communicated a high degree of hipness.  

I told them about Josh's autism and intellectual disability and they confidently had Josh sit down and came at his nose with a long swab.  Things went bad pretty quickly.  Josh was not at all interested in having something go up his nose and started screaming, "No! NO! NOOOOOO!" He started to flail his arms and kick with his feet.  The chair went flying.

The cool Asian men in PPE tried to hold him down enough to get 10 swirls of the swab in each nostril but it just got worse.  Josh screamed like he was being tortured.  For a second I thought about the faces of the people in line outside and wondered what they thought was going on and what might be in store for them when it was their turn to get tested.  It made me want to laugh except that I also wanted to cry.  

It was all going to hell in a hand basket when a short, older white woman came over and took charge, ordering the men to stop trying to hold him down.  She took a couple of deep breaths and we all followed suit.  We sat there breathing deeply together while everyone in a large auditorium were all probably very aware of us.  

Then the woman told Josh in a very calm but authoritative voice, "Josh, we need to put this in your nose.  I'm going to let you do it with me and we're going to count to ten."  She held out the swab and let Josh put his fingers around it while she also held onto it.  Then together, they stuck it up his nose and swirled it around.  He didn't like it but he did it.  And when she told him that we were done and that he had done a good job, he said, "Want chocolate."  I quickly gave him a piece of the leftover Halloween candy that I had in my purse.  The lady gave him the rest of the candy while I got my nose swabs.  Just as I was finishing, I saw that Josh was holding her hand and asking her for a quesadilla.  

As we drove from the community center to Taco Bell, I could literally feel the tension swirling around my body like someone had taken all of the stress from the past 7 months and and squished it into a tight bolus which I had swallowed.  Adrenaline pulsed down my arm like little arrows.  It's been a while since Josh has had a full scale melt down like that but, wow, he can still do 'em pretty impressively.

When we got back to the parking lot outside of his school,  I turned around to see my beloved son contentedly eating his prize from Taco Bell like the generally calm, happy person that he usually is. I love this kid so much it hurts.  I took a deep breath and said, "Ok Josh, let's go back to school."  He was quiet for a minute and then he said to me, "But first chocolate."  




Monday, October 12, 2020

Rain Man

 


My husband Alex is very committed to our daughters' movie education.  A veteran movie and TV watcher, Alex loves sharing the excellent films of his childhood, youth and young adulthood with them whenever they are willing.  At 13 and 14 they know more about World War II movies, sports themed movies and movies of the early 80s than most other kids their age.  We are aware that time may be running out on getting them to watch movies with us as they have just started high school and are on the brink of almost always choosing time with friends over time with parents.

Right before the school year started this year we realized that the girls had never seen Rain Man.  Given the fact that it's about a sibling relationship with a brother with autism, we skipped the usual back and forth about what people wanted to watch and just decided that we just had to watch this.  Hope and Anna had never heard of this movie and had no idea what it was about.  

Anna was hesitant at first saying, "It's kinda long, Dad. Can we watch something else?"  

We insisted, saying, "Just trust us. You'll like it."

They did like it.  We laughed.  We cried.  We called out unrealistic and disturbing things (like Tom Cruise's girlfriend kissing Raymond in the elevator).  Mostly, we resonated.  Here are the top four points from our post movie-watching conversation:

1)  Dustin Hoffman deserved his Oscar.  We thought he did a great job embodying a person with autism.  When his character had meltdowns or dealt with stress through saying things over and over again it felt very real to the four of us who have not only lived with Josh for a long time but have also observed his peers.

2)  Not all people with autism have savant syndrome.  Why does it seem like everything that in everything that Hollywood pumps out people with autism also have savant syndrome?  For example, we are fans of the Good Doctor, where the main character has both autism and savant syndrome as well.  He can figure out all sorts of medical miracles with his superhuman capability of picturing the details of the human body in his mind.  If Josh had savant syndrome, what kind would we want for him?  Musical ?  Mathematical?  Is the ability to draw hairdryers and fans on the magnadoodle for hours at a time a superpower?  We once had a music therapist who was sure that Josh was a musical savant with perfect pitch.  About a $1000 in music therapy lessons later, we realized that he didn't.  

3)  People with autism are capable of expressing a wide range of positive human experiences and emotions.  We loved how Raymond had moments of humor, affection and joy.  We really resonated with the movie makers' choice to have Raymond be a well-rounded person who had the whole human gamut of emotions and not just an amalgam of stereotypes of what people think that people with autism are like.  Our Josh is a fount of happiness, peace, confidence and curiosity.  We appreciated that as Charlie got to know his brother as a multi-dimensional person so do we.   

4) In this story, institutionalization was the answer.  Yes, this film was made in 1988 but we were curious about how people's perspective about the need to house people with autism and other disabilities in institutions have changed.  In this particular story, the best thing for Raymond ended up to be living in the institution which he had already lived in for decades. It didn't hurt that Charlie and Raymond's father had tons of money and could afford to house Charlie in a very nice institution.  Also, Charlie was clearly not in a place to be able to suddenly and responsibly live with Raymond.  Still, we wish that there were more examples in the media where families are shown to be living and flourishing with people with autism.

For those of you who know real people with autism, what felt real or interesting about this movie?  What felt off or wrong?  What do you think that this film says about people with autism? 






Monday, September 7, 2020

Family Meeting

Part of our survival strategy during COVID is to have family meetings.  During these times we try to resolve conflicts, agree upon expectations about chores, clarify family policies about online behavior etc.  Now, remember that my husband and I as well as our two 9th grade girls are all raging extroverts and these meetings are places where strong opinions and emotions are being unfurled so you really have to bring your A-game.  Your mind has to be sharp and your timing has to be ON or else you might not get any airspace or you might lose precious time in an endless bunny trail of random disagreements.  I've led a lot of meetings in my life and our family meetings are pretty much the zenith of leadership challenge.  If you lose concentration for a split second, you are bound to lose control and someone will end up leaving the room or crying.  

We were having one of those highly tension filled meetings in our living room when Josh sauntered out of his room and plopped down next to his sister.  We all stopped for a second because Josh does not usually join in on these meetings.  He had his headphones on, his ipad in hand and seemed pretty happy so we just continued on with our meeting agenda. 

At one point, the emotional tension was really starting to build.  I can't remember what the topic was but there was considerable disagreement about it.  Things that were being said by one person were taken as seriously offensive to another family member.  I wondered for a second if this was going to be one of those meetings that we have to halt and come back to later.  

But just at the right moment, Josh entered the conversation by echoing something that was said a few minutes earlier in the conversation.  

"That's totally inappropriate!"

The rest of us stopped, looked at each other and couldn't help but to laugh.  

"That's totally inappropriate!"  

"Joshie, is it totally inappropriate?" I asked my sweet boy.

"Yes." He said, very calmly, focused on this ipad.  

That little moment of levity was all we needed.  We were able to finish our meeting and iron out our differences with much more calmness.  Josh had been just the special guest consultant that we needed to survive another meeting with teen girls who are trying their best to survive a pandemic (and their frazzled parents).  

(This is not from a family meeting but another time where we were just hanging out together.)



Monday, August 17, 2020

Happy as a Clam

 


When we first arrived at our friends' beach house I was already a mess.  I was afraid that our unruly, chaotic mop of a dog would pee in their house.  I kept thinking about all of the things which I had forgotten to pack.  It was hot.  I was already tired.  Of course, the biggest worry, as always, was about how Josh would do.  This was a place where we had never stayed before and Josh is always stressed by new places.  

We always let Josh stay in the car as long as possible while the rest of us unpack the car and get situated in any new place.  Alex brought all of Josh's accoutrements into the room which he would get to stay in all by himself: his stereo, his Ipad, his magnadoodle toy.  When there was nothing left to unpack I went out to the van to coax Josh to come in.  I can't remember if I had to bribe him with a snack . . . probably yes.  

I feel bad saying this but, with our family, going on any trip is a big fat risk.  We're definitely had our share of family trips that have spectacularly NOT gone well.  For the past twelve years, we have had the most success vacationing at our dear friends' lake cabin in the mountains.  Josh gets to stay in the basement family room where it's quiet and he gets his own space.  He loves it and he knows what to expect.  If he hears us mentioning "the lake cabin" Josh will start saying "wanna go to the lake cabin" over and over again.  But this year our friends are in the midst of a remodeling project so it wasn't an option.  Also, we happen to be in the middle of a pandemic this summer so we assumed that we would just stay put.  Just when being in our house was going to drive us fully bonkers, some other friends reached out asking if we might want to stay at their beach place about an hour away.  Uh, yeah!

Today is our third day here and we finally felt ready to take the risk to take Josh down the mini-hike down to the beach.  The last time we took Josh to the beach, he didn't like it and he wanted to go home right away, which was a bummer for the rest of us.  But the beauty of this place was just so ridiculous that we had to try again.  Hope went down earlier than the rest of us and she texted me, "MOM! THERE ARE DOLPHINS!"  I looked out of the main bedroom's window and, sure enough, I could see a pod of dolphins frolicking in the water below not far from the shore.  

That was it.  I summoned the energy to pack up all of our beach stuff and drag Josh down the path and three sets of very steep steps down to the beach.  He was scared but he held tight to the guard rail and my t-shirt and carefully headed down.  

It was pretty much love at first sight.  Josh plopped himself down in the wet sand and, for the next two hours, delighted in the sensory input of the cool waves hitting his body.  He was like a little brown lighthouse of joy, waving his arms in the air, laughing loudly and saying some of his favorite words;  "feelings!", "abortion!", "cocaine!", "train!".  Several people walked by and gave us a smile.  

Alex and I took turns closely supervising him in the water while admiring how well the girls had taken to boogie boarding.  We each got some time to ourselves under the umbrella to read as well.  

To top it all off, I quickly found that if I dug into the wet sand a little bit with my feet, it was not too hard to find clams!  Be still my immigrant heart!  Not only was this day going so well but was I going to have FREE seafood to cook for dinner as well?  This is crazy!  

Ok.  Not everything in a given day has to be perfect in order for a day to be wonderful.  It turned out that there is a quarantine on shellfish in this area because of an abundance of a certain marine bio-toxin so we couldn't eat the clams.  Also, one of my supposedly independent teens elected to not apply sunscreen prior to swimming in the ocean for hours so some amount of wailing about crispy skin ensued.  But we all agreed that the day had been very good and we were filled with gladness and gratitude.  

Sunday, March 29, 2020

Abortion, Cocaine and Such


I think I might have solved a long standing mystery in our household.  As I mentioned in my previous blog post, Josh has a habit of repeatedly speaking out a word or phrase which he takes a liking to.  We are guessing that he doesn't speak the word for what it means to most of us but he likes how it sounds.  Sometimes they're nonsense words that he's made up like "recordian".  Oh how he loves to say that.  I'll walk into his room and he'll be saying, "recordian" and just savoring the sound of it with a sweet smile it like he's had some fine wine or gourmet chocolate or something.

One of his favorite real words is "abortion".  He seriously says it all the time. A new word which Josh is fond of is "cocaine".  It's both annoying and disturbing to have him say these words over and over and over again.  They're not lovely words.  I don't like that he says them and I don't know where he got them.

Starting about a year ago, he'll say a word or phrase aloud and then he will keep saying it until we say it back to him.  Maybe it's his autistic way of being relational or interactive but it sure doesn't feel very relational from the neuro-typical side. And if we don't say it back to him, he'll keep saying it with more volume and intensity until one of us breaks down and finally says the word just to get him to shut up, especially if we're in a car together.

"Abortion? Abortion?  ABORTION!"

"Yeah, abortion, Josh"

"Hey, I thought we weren't going to say it back to him!"

"Yeah, we need to break him of this pattern.  It's so annoying!"

"I just can't stand it anymore.  I just need him to stop."

"Yeah, I know."

(3 minutes pass)

"Cocaine?"

You get the picture.  Anyways, today I walked into his room where he was listening to the radio and caught the tail end of someone sharing a testimony on the Christian radio station.  The person was sharing about how he used to be a major cocaine user until Jesus came into his life and now he's sober.  Oh. My. Goodness.  That's it.  Josh has been picking up these words from CHRISTIAN FREAKING RADIO!  I bet that's where he got the word "abortion" as well!  Ok now.  How can I fix is little CD player to not be able to play Christian radio?  And no rap stations either.  That might be where he's getting all his swear words.