Sleep, that knits up the raveled sleeve of care

Macbeth: “Me thought I heard a voice cry ‘Sleep no more!  Macbeth does murder sleep’ the innocent sleep.  Sleep that knits up the raveled sleeve of care, the death of each day’s life, sore labor’s bath, Balm of hurt minds, great nature’s second course, Chief nourisher in life’s feast.”

Sleep, love it or hate it, we all need it.  In these lines Shakespeare means that sleep “knits up” or secures what has become tangled or confused in our lives.  If something is raveled it is confused or knotted.  Sleep helps bring loose ends together and smooths out issues that may be on our mind before we go to sleep.

For whatever reason, Mr. Boo was considerably unraveled last night.  I gave him his night medications a little before nine pm. Usually this means he will wind down by about ten pm.  Not so last night.  He bounced, he thumped, he hooted.  Ocassionally he would settle down, only to bounce back ten minutes later.  I checked on him several times throughout the night.  He did not seem to really need anything.  He was not hungry or thirsty, per say.  He just could not settle down.  At four am I went into his room to give him another dose of sleep meds and settled down with him for a while.  No good.  He was happy for the company but mostly just wanted to drum his feet and hands against my legs.  The rhythmic thumping seemed to make him happy.  At five am I decided I had enough bruises on my legs to last for a while and decided to give him his usual daily meds.  This includes 25 mg more of his Lamictal than the day before. Over the next three weeks we (under the guidance of his neurologist)are titrating up his anti epileptic medicine.  I am hopeful that this will help.  When the office opens I will call his nurse practioner, asking for more ideas in how to help him sleep.  When he is sleep deprived he is much more likely to have a seizure. Seizures throw off his wake/sleep cycle, creating a perfect storm.

So, here we are at 6:30 in the morning. Boo has had his meds.  The dog (also an epileptic) has had his.  I have had mine and am busily guzzling coffee.  Boo is happily stimming in his room with his iPad.  I have the song “Teddy Bear Teddy Bear, turn around” playing on repeat in my head because this is what Boo has playing on repeat on his device.  This could be a long day.  Peace out y’all, and be kind to one another.  Be good people.  Some of us are seriously sleep deprived.  When in doubt about what to do, offer coffee.

A job, a career, a calling

Boo and I were out yesterday taking a nice long wandering walk around the neighborhood.  I was reflecting on the various jobs I have had over the years, starting when I was eleven, babysitting and dog walking, moving on as I got older into retail, office work, outreach ministry, teaching, nannying, and then caring for Boo.  I also starting thinking about the difference between a job, a career and a calling.  A job, I think, is any task you do to earn money.  You might like it or not like it, but it provides cash and makes you feel like a semi productive member of society.  In a good economy, you can flit from one job to another, depending on what suits you.  A career is something you go to school to learn how to do.  I went back to school after college specifically to become a teacher.  That was my career.  This was more than just a job.  I had invested time and money to get to this position.  The stakes are higher but the pay and the benefits are  generally better.  After a few years of teaching and getting my feet wet, a career became a calling.  This was something that deep down I knew I should be doing.  It just felt right, even though the days were long and the work was hard.  I had always told my students that I would teach as long as teaching brought me joy and I could bring joy into my classroom.  In 2015 a toxic work environment combined with a tragedy in my family meant that teaching no longer brought me joy. I bid the classroom farewell.

Well, after nearly twenty years in the classroom, what it one to do with onself?  I did some tutoring, which was fun, but really just a job.  The pay was not high, but the students were bright and engaging.  It was a way to pass a few hours now and then.  About this time I realized that I really missed working with small people and became a nanny.  This was more than a job, as I was definitely commited and had a contract.  It did not really feel like a career, though I know many career nannies.  It did not feel like a calling, as these were not my children.  Whatever nannying was or wasn’t it worked for three years and I was fairly satisfied.  Towards the end of my nannying stint Boo developed epilepsy.  The seizure were sudden and random, demanding that I immediately leave work and head off to his school or the ER to pick him up, depending on the severity of the seizure.  It soon became clear that I could not hold a job outside of the home, no matter how flexible it was.  I was on call 24/7.

At about this time I switched companies that managed the payrolls for my PCAs.  It turned out that the state of MN would pay me to be a paid parent and my income would not be taxed.  I was stunned.  Someone would pay me to stay home and take care of Boo?  Yup!  It makes sense.  Boo would do much better living at home than in a group home or treatment center and it was much less expensive for the state to pay me to care for him than for them to house and feed him.  So, I became Boo’s paid caretaker for 24 hours a week.  In March, Covid 19 hit and everyone went into quarantine.  I had no one to come help me with Boo, so I was given all 40 of his hours of care.  This suited me just fine.  I am a mom.  My job is to look after Boo and Mouse.  If the state of Minnesota wants to pay me to stay home and care for my kids, so much the better. This was made even better by the fact that working from home with Boo paid much better than nannying and about as well as teaching.

So, this is my occupation, probably for good long time.  Or, until Boo gets completely sick of me, which does not seem like it is going to happen.  But, is it is a job, a career, or a calling?  I can’t call it a job, as the stakes are too high and I am too emotionally attached.  I don’t think it is a career, because I did not have to go to school to learn to be a mom.  Being a mom is something that just happens, by trial and error over the years.  I think, what I have now, is a calling.  This just feels right.  I am totally responsible for the wellbeing of this vulnerable young adult.  From managing his medications, to helping him with bathing and grooming, to educating him when school is on hold, to holding his hand as we wander the neighborhood.  For some reason, by the grace of God, this young adult was given to me, to delight in and to take care of.  This is my calling.

Boo Graduates !

This was not the graduation ceremony that we had imagined, it was better!  How do you mark time during Covid 19?  How do you make a certain day stand out?  Ask the wonderful teachers at Bridge View School and they will show you!

So, obviously, the traditional graduation ceremony was not going to happen, but Mr Boo has never been one to stand on ceremony anyway.  May 16, 2020 was his big day.  I had spent days telling him that he was a senior, about to graduate and what a big deal that was.  We went to the store and got party supplies and lots of candy (his choice).  We scrubbed and decorated the house.  We even got the dog groomed.  To my profound relief the weather held off and it did not rain until that night.  At the appointed hour a long queu of cars full of Bridge View teachers and staff pulled up in front of the house honking and playing loud music.  Boo’s eyes got huge.  Out popped teacher Lars with a big yard sign and a cap and gown.  We stuck the sign in the ground and draped Boo in his cap and gown.  Teacher Sonia jumped out of her car with gift bags and a hug.  She snapped a quick photo and hopped back in her car. Hoards of teachers in cars poured down the street honking and cheering.  Boo looked stunned, yet very pleased.  Neighbors came out of their houses to clap and cheer.  Mommy laughed, cried, and snapped pictures. Alisaa took even more pictures.  Dogs barked, horns honked, neighbors cheered and it was a perfect racket.  It was absolutely wonderful!  Eventually, all the teachers drove on to the next graduate’s house and suddenly it grew quiet again.  More pictures were taken with favorite PCAs and friends and then the party began.  Mr. Boo ate himself into a sugar induced oblivion and collapsed on his bed in a fit of giggles.  Dear friends visited as if we had not seen each other in months.  Oh, that’s right, we had not seen each other in months.  Boo seemed happy to mostly hang out in his room and receive visitors one at a time.  Every time I caught his eye he beamed at me and giggled.  It was a perfect day.

In retrospect, this was probably the best kind of ceremony for Boo. He is not one to stand on Pomp and Circumstance.  He probably would have tuned out somone’s well intentioned graduate speech.  But, he loves his teachers and his friends.  Honking cars and flying flags are lots of fun.  Candy is good stuff.  This day had all of these things and more.  This was really all he wanted and needed. Thank you so much to all the Bridge View teachers and staff who gave up their Saturday afternoon.  Thank you to Peter, Alissa, and Jessie, who have seen us through the good times and the hard times.  Thank you to all of our dear friends, near and far who sent their best wishes and love.  Thank you to all of you who have supported us on this nearly 18 year journey.  Boo Bear loves you.  May I present to you, Mr. Boo Bear Herndon, high school graduate!

Food Glorious Food

During the pandemic I have been sheltering four teens.  Two of them are mine, two of them are close friends of Mouse.  I adore all of them and amazingly we have not really gotten on each others nerves, though my house is really small.  Under my roof at present, I have two adults, four teens, three dogs, and two hedgehogs.  It seems that there is always another load to go in the washing machine and the dish washer is working over time.  Mostly, the teens are really respectful and helpful.  Boo likes them even though he realizes that he cannot consistently charm them out of candy every five minutes.  The only thing vaguely alarming about this set up is the size of my grocery bill.  Growing teenagers eat a lot.  I try not to stress about food in front of them because I don’t want them to feel guilty about having basic needs.  Anyway, all of this was running through my head as Mr. Boo and I were taking our daily walk around the neighborhood.  On our return from the walk, I noticed a box and half gallon of milk sitting on our front porch.  The tag said it was from St. Paul Public Schools.  I brought the box in and unloaded it. Inside was a loaf of bread,  a generous portion of turkey, fruits, vegetables, fruit cups and various snacks.  It was more than enough food for a weeks worth of lunches.  I was stunned, and relieved.

After I fed Mr. Boo a snack I looked on the district website to see if I could figure out why I had just gotten this windfall.  Turns out, the district was dropping off food for families who were on free or reduced lunch or who had a child with a disability.  A weeks work of food would be dropped off every Friday through out the spring.  This meant, that just for the students of Bridge View alone, hundreds of boxes were sent out, all over the metro area.  I can only imagine the surprise and delight of the recipients.  I sent a thank you note to Teacher Sonia and asked her to pass on my thanks to anyone that she could.  She said that she would do that and said if there was anything else my family needed for the teens, please reach out.

This pandemic has showed me the good, the bad, the heartbreaking and the ugly.  But, today, like every day, I am going to focus on the good.  There are people out there who want to be sure that hungry children get fed.  There are neighbors up the street who put a joke of the day out on the walk with sidewalk chalk. Other neighbors hang up solidarity signs and balloons.  Musicians come out on the their porches and balconies and serenade the neighborhood.  There is less car traffic on our streets and more people walking dogs.  There are crocuses coming up, trees beginning to bud and squirrels and bunnies acting flirty.  And, in refrigerators across town, there is enough food to feed students lunches for a week.  For all these things, I am very grateful.

Some Good Things

My muse has been silent for a while, perhaps temporarily silenced by the pandemic.  This does not mean that good things have not been happening, they have, one just needs to know where to look.  In no particular order, here are some good things: an 18th birthday and a drive by parade, jokes of the day, and angels in disguise at the optical shop.

Let’s start from the top.  Alissa has an awesome younger brother, Drew, who is also on the spectrum.  Last Saturday he turned 18.  Normally, this is an event which should be celebrated with all the bells and whistles, but we are in a pandemic.  Thinking fast, Alissa called all her friends, Drew’s friends, and family members.  We spent a feverish night making signs and planning.  At the appointed hour on Saturday we arrived at a pizza joint near Drew’s house to assemble.  John, soon to be Drew’s step father, led off with a team of 7 friends on motorcycles.  He was followed by a caravan of cars full of adoring fans, dogs, and squirming children.  In stately formation we filed down the block and past Drew’s townhouse where he was sitting on the balcony.  We honked, yelled Happy Birthday, and waved our signs.  Dogs barked madly, motorcycles revved and it was quite the little scene.  Drew was wearing an ear to ear grin. Alissa stayed behind to socialize at an appropriate distance while the rest of us went on with our day.  This was the first good thing.

Another good thing is our neighbor on Summit Ave.  He/she puts out a joke of the day on his/her sidewalk .  Some of them are groaners and some are really funny, but everyday neighbors stream by the house at appropriate distances to get a chuckle.  This same person, or maybe another neighbor puts up motivational signs in the greenway for pedestrians to see.  I usually take pictures of these signs, they change from day to day, and then send them to friends.

The last good thing of this essay involves an angel in disguise at the Target Optical Shop.  Last Sunday night Boo had a series of bad seizures and projectile vomiting.  It was probably one of the scariest nights of my life.  Somehow, in all the fracas, the glasses got smashed and then put through the washer and dryer with some soiled linen.  I found the once proud glasses, in three pieces, in my dryer the next morning.  Without his glasses, Boo is virtually blind.  I gathered up the sad remains of the glasses and took them and Boo to the glasses shop.  When we got there, the gate was down but the lights were still on.  The sign said that due to their temporary hours they were only open until 1:00 pm.  The clock said it was 1:03. I sighed.  Suddenly a voice from the back of the store asked if she could help me.  A small, smartly dressed woman appeared and asked what she could do for us.  I held out the sad remains of the glasses and told her what had happened.  She took them and told me to go shopping and come back in ten minutes.  She was incredibly gracious.  Boo and I went in search of treats and came back in the allotted time.  She ducked under the gate and came out to see us.  She said that she was giving us new frames as the old ones were past repairing.  She refused to take any money from me.  She fitted the glasses to Boo’s head and send us on our way with a gentle smile.  Sweet lady, I did not catch your name, but thank you from the bottom of my heart. Thank you from Boo, too, who can now see where he is going.  I am now firmly convinced that at least this particular optical shop has its own angel.  On the way out of the store we bumped into a former aide from Bridge View School who made a big fuss out over Boo.  Since he had his glasses on he could see her and responded in kind.

So, this is a list of some good things during a really scary time.  I have been trying to keep a list of good things and beautiful people that I have met in my journal.  Mr. Rogers said that when scary things happen look for the helpers.  I have seen these helpers and they are amazing.  They are a caring big sister who made a parade for her brother’s 18th birthday.  They are the neighbors that put out corny jokes, inspirational signs and free food, seeds, and books.  They are the angels in optical shops who help distraught moms who just want their child to be able to see again.  In a scary time I can still see things of beauty.  I hope that you can, too.  Keep the faith, keep safe, and we will see you on the other side.

SPPS for the win

Hello!  This is a shout out to St. Paul Public Schools and their amazing teachers.  As you know, last week they were on strike, fighting for better mental health care for their students and more bilingual teachers in the classrooms.  Thankfully, the strike ended, in the teachers favor, but then school was cancelled due to Covid 19.  Yesterday, I went to Bridge View School to pick up Boo’s iPad and school supplies. I was greeted at the door by a cheerful assembly line of staff who had me sign out Boo’s belongings with a minimum of contact.  They asked if I needed anything, from diapers, to wipes, to formula, to lunches.  I assured them that we were fine and went on my merry way.  An hour later I got a text from teacher Sonia that she had forgotten to include Boo’s communication notebook.  I went back down to the school, this time bearing a six pack of Ensure in case any family had need of it. I picked up the notebook and was again quizzed if I needed anything.  Again, I told them we were fine and handed off the Ensure.  A staff person happily took it and said she would pass it on to the nurse who could give it to the right family.  She was so happy to see it I wished that I had more to give.  Both interactions with the school yesterday morning moved me to grateful tears.  Teachers are so under paid and over worked, yet their goodness shines through every time.

I took the supplies home to Boo and his eyes opened wide. He was delighted to have all his supplies.  I spent at least an hour homeschooling him that afternoon, and when Alissa came over, he happily spent another hour working with us.  This quickly showed us that my son is a smart cookie.  He may be non verbal but he knows the days of the week, the months of the year, and can count at least up to 31. He can read simple sentences and folow one to two step directions.  I was amazed by the treasure trove of teaching apps on his iPad.  They could keep us busy for weeks!  His teacher also sent home paper and pencil activities as well, plus a very good social story about Covid 19.  I was very amused by Mr. Boo.  Now he has 2 iPads.  Usually I just let him use one while the other is recharging.  If he can get both of them at the same time, he likes to have them “talk” to each other.  It is quite funny, especially coming from a “non verbal” kid.  I think I will have fun homeschooling him.  I am still a teacher at heart, so I am more than happy to have Mr. Boo, Mouse, and a couple of her friends all working at my dining room table.  The only reason I allow even this small gathering is that these kids are together all day every day when school is in session. I figure there is very little risk of anyone infecting someone else, as we are virtually locked in from the rest of the world.

To the rest of the outside world. I wish only good things to come to your doorstep.  Help you fellow man. Don’t horde all the toilet paper.  Enjoy sunrises and sunsets.  Virtually hug your friends and loved ones.  And, if you happen to see a public school teacher, give them your undying thanks.

Super Moon? Super Boo!

So, apparently there was a super moon last night. I could not see it, as it was overcast, but Mr. Boo certainly fell under its spell.  He was up all night.  He is still up at five this morning. He is not unhappy at all, just burbling away to himself in his room, with the occasional banshee wail thrown in for good measure.  Maybe he is expressing his opinions on the teacher strike. There have been negotiations going on between the teacher union and the school board for weeks.  The strike date was set for March 10.  We went to bed last night not knowing it there would be school in the morning or not.  At 5:00 am we got a robocall from the district announcing that all classes are cancelled for the day.  This does not mess up my schedule too much, as I work from home.  I feel very badly for parents who suddenly have to find childcare at 5:00 am.  That stinks.  I am encouraging everyone to support their local teachers, whether it is joining them on the strike line, bringing by snacks and coffee, or writing the superintendent to tell him what you think.  If you are interested, his address is joe.gathard@spps.org.  Please feel free to flood his inbox.  I have already written to him.

So, what to do with the burbling Boo Bear?  He is clearly up for the day, even though the birds are not.  We need to get some groceries.  He probably would like to mall walk for a bit and get some French fries.  A trip to Como Zoo might be in order as well.  We will be fine.  If you pass teachers on the strike line, please honk and give them a thumbs up.  Teaching is hard work.  It is even harder when you don’t have the necessary supports.  Our teachers are only asking for what their students so desperately need: more mental health support and more bilingual staff in the classrooms.  Please, flood the airwaves with their needs.  Let’s bring our teachers off the picket line and back into the classrooms where they belong.

Strike?

Though these are tense times, Mr. Boo does not seem that bothered.  He does not worry about who stays in or who drops out of presidential races.  He does not worry if the St. Paul teachers go on strike.  As long as the sun still shines and there are gummy bears, he is a happy camper.  But, his mother loses a lot of sleep over such things.

As a former teacher, I thoroughly support the teachers of St. Paul.  Their requests are simple, they want better mental health care for their students and smaller classes.  I know all too well what it is like to have huge classes crammed into tiny classrooms.  I know what it is like to have at risk students and no one to refer them to for their mental health care needs.  It is hard and scary to be in such a position.  These teachers desperately need more help.  But, where can the help come from? If the superintendent is correct, there is no money in the budget. He does not have a magic wand.  These negotiations have been dragging on since May and are about to come to a head next week.  If a resolution cannot be reached this weekend, teachers will strike on Tuesday.  This will adversely affect so many students.  I am lucky.  I work from home.  I can take care of Boo.  But, what of the parents who are working two and three jobs just to keep a roof over their heads. Who will watch their children?  This is what truly scares me.  What will happen to these families.

I really don’t know what to do this weekend besides wait and pray.  I support the teachers, but I don’t want a strike.  I think many of them don’t either.  Children will go without school. Parent will go without work.  Vacations and graduations will be set back.  Boo and I have had May 29 on our calendar all year.  This is to be his graduation day.  But, will it?

What a Great Day!

Hi folks!  It is Boo Bear and I am here to tell you about my utterly fantastic Saturday.  This Saturday I thought I would be sad because my favorite weekend PCA, Peter, has gone missing.  Mom says he is in Ireland, but I don’t know where that it and I miss him.  But, guess what happened?  My favorite weekday PCA, Alissa, showed up and took me off for an adventure!  We drove outside of town to Buck Hill where people strap long skinny boards to their feet and go sliding down hill.  How funny!  Alissa did not put long skinny boards on my feet. Instead, we sat inside a big blue tube and went sailing down the hill!  It was fast!  It was fun!  I was not sure about it at first, but Alissa showed me that Buck Hill was a nice place because they have French Fries.  I love French Fries!  So, after a snack I decided that tubing  was pretty fun.  I would not wear my gloves because I like to feel the cold on my hands, but I did wear my favorite penguin hat.  It was a beautiful day.  The sun was out and it was not too cold.  I don’t like cold much, but I love going on adventures with Alissa.

After a while, Alissa decided to take me home.  I was kind of wet from sitting in lots of puddles.  At home Mommy gave me a warm bath and then I decided I was hungry.  I mean, I was very hungry!  Do you remember the children’s book The Very Hungry Caterpillar?  I decided I was  very hungry caterpillar.  I ate an entire chicken, an order of fries, a Gatorade, a juice box, half a block of cheese, a sleeve of crackers and a fistful of Twizzlers.  Then, I went into a food coma.  I was not quite asleep, I just lay around and burped and hiccupped a lot.  I think Mommy might have been laughing at me but I was too full to care.  Eventually, I decided to go to bed, after a bit of dairy free ice cream for my meds.  I curled up and went sound asleep.  Maybe when I wake up I will be a big, beautiful butterfly!  I will let you know when I wake up.  Maybe I will be a butterfly, or maybe I will just be a Boo Bear who likes to fly.  At any rate, sweet dreams all!

Guardianship

Hello all. As Mr. Boo moves towards his 18th birthday some changes are coming.  Normally, this would mean a kid is about the ascend into adulthood (sort of) graduate from high school, go off and start to make their way in the world.  But, Mr. Boo has never been one to follow a script. He will graduate from high school, on May 29th.  From there, he will spend 3 years at the transition school next door, Focus Beyond.  He will still continue to participate in Special Olympics.  The only thing that changes is that on March 24, Robert and I will go to court to ask a judge to continue to have guardianship of Boo as he transitions into his adult years.  The paperwork is already done. We have met with a lawyer, signed all the correct documents, now it is just a matter of finalizing things.  As Ravi becomes an adult he has certain rights with the state of MN.  Interestingly, he has the right to marry and have a child.  However, I must go to the judge and petition for him to have the right to vote in elections.  As our lawyer put it, the law is sometimes odd.  So, my nonverbal teen can marry and have a child, but a judge can take away his right to vote on a whim?  Pardon me, but I am a bit perplexed.  The other rights all seem normal.  Boo has the right to food, shelter, clothes, and safety.  He has the right to an education until he turns 22.  He has the right to make friends and have a social life.  All these things are right and good.

I have strong feelings about Boo having the right to vote. Our neighbors across the street have an adult daughter  with Down’s Syndrome.  When I last voted in an election, I saw her casting her ballot as well.  At that moment, the seed was planted. I want Boo to have the opportunity to vote.  We talk about politics a lot at home.  Boo has a clear sense of right and wrong and  knows who he likes and who he does not like.  He will be 18 in the next electoral cycle.  I think he has the right to vote and I am going to clearly express this to the Ramsey County Judge on March 24.

For some reason, and I am not certain why, I am nervous about this upcoming hearing.  Robert and I will sign papers that say we will take care of Boo as long as we live.  After our passing, the guardianship goes on, and Boo will continue to be taken care of.  It does not seem long ago, to me, that Boo was an preemie in the NICU, struggling to breathe, to retain his temperature, to nurse.  Now, I am signing papers that say he is an adult.  This nearly takes my breath away.

Thank you to the village with whom I share Boo.  You are his support system, his cheerleaders, and for this I am infinitely grateful.