Boo, what do you know?

Boo, you may be non verbal, but you are a smart cookie. You pick up on a vibe instantly. It is for good reason I never watch the news around you. I try not to talk about scary things around you, because you are always listening. We tried not to talk about George Floyd in your hearing. Tried not to talk about how an innocent man died in the street, trapped under the knee of a cop, unable to breathe. We did not talk about the looting and rioting that is going on in Minneapolis, only two miles away. But, you were awake all last night. Thankfully, you did not have a seizure. But, you could smell the smoke in the air. You could hear the dogs pacing the floor. You could hear the choppers overhead. You knew. All night long you paced and flapped. Around three in morning you burst into heartbreaking tears. I held you in my arms and told you that I loved you, that I would keep you safe, that you were my good Boo. I tried to get you to sleep. At 5:00 am I got up Mouse, so we could look for the comet for her astronomy class. You insisted on following us. We could not find the comet. The air was thick with smoke. The choppers were overhead. We went back in. I gave up on sleep for the night. Gave you your morning meds, praying they would hold off the seizure that lack of sleep seems to bring. I gave you your iPad and let you retreat back into your room. I turned the TV on mute and watched as our sister city went up in flames. Interestingly, all the corporations got the torch, but the independent and minority owned stores surved. Target is looted, Auto Zone, Aldi’s, Wendy’s, the new high rise, they are all gone. New Moon Bookstore is still there. The Indian restaurant is still there. I don’t know if Hook and Ladder made it or not. My friend on that side of town says her house is okay but it is a surreal scene. Everything is acrid with black smoke. All she can hear is choppers, gun shots, and oddly morning birds singing. I reach out to other friends. Are you okay, are you safe? I worry about the ones that don’t answer back. Maybe they are sleeping? But, how can one sleep when one’s city is on fire?

What do you know, Boo Bear? What keeps you up at night? Last night was a hard night for so many. This morning we blearily stumble to our coffee pots, look at our newspapers, pray for peace, hope that the National Guard is not needed. We did not need police brutality in the middle of a pandemic. Correction, we never need police brutality. How do I keep you safe, Boo Bear? How can I get you to sleep? How can we stop the seizures? How can we stop the violence? How, how, how? I have so many questions and no answers. All I can do is hold you and love you. I will always protect you. What do you know, Boo Bear? What would you say to the world? Can you pray and act for peace? Can the world stop and listen to a non verbal Boo?


As of May of this year, Bug and I became the offical guardians of Boo.  Because of the pandemic, we did not get to have our day in court, but as no one was contesting the guardianship it went through just fine.  So, what does this mean going forward?  It means that Bug and I are now “authorized to act as Limited Co-Guardians”.  For Boo, this mean we will do the following:

  1. To establish the place of abode with or without the State.
  2. To provide for the Responden’ts care, comfort, and mainenance needs.
  3. To give any necessary consent to enable, or to withold consent for, the necessary medical or other professional care, counsel, treatment, or service.
  4. To approve or withold approval of any contract, except for necessities, which the Respondent may make or wish to make.
  5. To exercise superivisory authority over Respondent.
  6. To apply on behalf of the Respondent for any assistance, services, or benefits available to the Respondent through any unit of government.

What does this mean for Boo?  According to the state of Minnesota, he has the right to marry and have a child.  Obviously,  we don’t see this happening, but he has the right.  To my great joy, he also has the right to vote.  The lawyer seemed dubious about this request.  He said most wards like Boo do not vote. I explained that at the last election I saw a young woman with special needs casting her vote for the first time.  I decided then and there that Boo would also get this right.  We are a highly political family.  Boo listens carefully to our discussions. He has an acute sense of right and wrong.  He knows who he likes and who he does not like. This leads me to believe that he should be able to vote.  So, I don’t know what the lawyer said to the judge, but my request was granted!  Boo will vote in the November election.  Mouse is jealous that she is two years too young.

So, I have listed the things a guardian can do for a ward.  Are there things a guardian cannot do to a ward?  The answer is simply, yes.  A guardian cannot admit a ward (with limited exceptions) to a regional treatment center.   A guardian cannot have their ward sterilized, submitted to electroshock therapy or experimental treatment of any kind and cannot revoke a health care directive.  This seemed like a no brainer to me, but obviously someone must have tried since they were sent along in our guardianship packet.

Guardianship is a lengthy process.  I started gathering data back in October and working with a lawyer at the beginning of this year.  It is also not an inexpensive process, but the legal team takes care of everything once the guardian has submitted the paperwork.  Luckily, we had all the paperwork ready to go before the pandemic hit.  In March, all of the court closed down.  I don’t even know if they have opened yet, but cases like Boo’s were able to be handled without us coming down to the courthouse.  Every year after this I have to submit a report to the court about Boo’s wellbeing and what gains or losses he has made.  This will ensure that guardianship continues smoothly.

I am very proud and relieved to be one of Boo’s guardians.  He has always been one of the lights of my life, but now I have ensured his safety, happiness, and wellbeing.  Welcome to adulthood, big guy!  We got guardianship and had a graduation all in the same month.  I can only wait to see what adventures this summer brings.  Love you always,  Mom.

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.