The Delights of Routine

Mr. Boo is now nearly two weeks into adulthood and seems to be hitting his stride. We have our summertime routine, now. Since he is growing like mad, he loves to sleep in. I wake him up early to give him his meds, but then let him doze off again. In a few hours he will get up and raid the kitchen for pop tarts. We will eat and dress in a leisurely fashion and then go face the outside world. Right now, he is on a Wendy’s kick. Please don’t judge me. I won’t eat Wendy’s because they support the orange maggot in office. But, these days, Boo is a picky eater and I will do almost anything to get calories into him. So, we swing by the drive through and pick up chicken nuggets, fries, and a drink. We drive to the nearby park and go to the same picnic table every time. Boo tears into his bag of food with wild abandon. After the first few bites he slows down enough to savor his food. We watch the birds and the squirrels. They watch us, waiting for fallout. They won’t come up to us, but as soon as we vacate the premises they are all over the scraps.

After lunch we wander over to Har Mar mall. I am amazed the place is still open. Most of the stores are shuttered. There is nary a soul to be seen. But, Boo loves this place. We have visited here since infancy. There are long corridors for walking and running. He can do his own thing without bothering anyone and it is easy for me to keep an eye on him. His favorite thing at the mall is the gumball machine. You put in your quarter and a gumball comes spiralling down a long ramp. Ah, the delight of anticipation. What color will the gumball be this time? Red? Blue? Green? Yellow? Once the gumball pops out of its chute it goes directly into Boo’s mouth. Pure bliss.

We had not been to Har Mar during the shut down, so Boo was very happy to return this week. It was dead quiet. Even the octogenarian walkers were nowhere to be seen. Neither, alas alack, was the gumball machine! All the candy machines in the mall had been taken out during Covid. Mr. Boo looked high and low, but we could not find them. He was still happy enough to walk a few laps around the mall and then we headed for our next favorite place, Target. I picked up his meds at the pharmacy and then we stopped by Starbucks for a juice box. A kind friend had given him a $25 gift certificate here so this should keep him in juice boxes for a long time. Thank you, Karen! He took his juice box and I took my coffee and we headed back out into the world.

At home, he was happy enough to flop on his bed with his iPad and the puppy for while. Gloria licked him all over as he probably still tasted or smelled like chicken and French fries. The two of them have a love/hate relationship. She likes to steal his food. He likes to pull on her paws. But, when I suggest that they give each other some space all I get are dirty looks from the two of them. Most of the time when Boo is flopped out on his bed, Gloria is somewhere nearby. After a rest, we go for a walk to explore the neighborhood. Glorious pop art has sprung up all over our neighborhood after the George Floyd killing. It is a vital reminder that yet another innocent life was lost but that they fight for truth, justice, and common decency must go on. I point out the Black Lives Matter signs to Boo and we talk about social justice. We see a sign that says “Be a nice human” and I pause to take a picture of it. Sometimes we walk 2 miles. Sometimes we walk 5. It all depends on how much energy Mr. Boo has to burn on that particular day. Eventually, we head home and see what daddy has prepared for dinner. We spend a few hours together as a family and then it is time for the next round of meds. This combo of meds tends to make Boo sleepy. He prefers to doze off while playing with his iPad. Normally, I would discourage screen time right before bed, but it really does have a soporific effect on him, an sleep can be hard to come by, so I let it go. Eventually, he will drift off and I will slip out of his room. Sleep well, dear little man.

The other night after our first Har Mar expedition, I had the most wonderful dream. Boo and I were exploring the mall. We found a secret back room, known only to those on the spectrum. In this back room were all the hidden gumball machines. The room was full of kids and young men just like Boo, all happily chomping away on gumballs. I woke up smiling from this dream. Boo, I hope Covid ends, oh how I hope if ends, and the gumballs come back. In the meantime, we will make do with juice boxes from Starbucks.

Happy Early Birthday, Mouse!

Dear Miss Mouse,

It is the last day of your fifteenth year. You started tenth grade this year and finished during a pandemic, still rocking your 4.0 GPA. It was not the year we imagined it to be, but you handled it with grace and poise, nonetheless. I love watching the proud woman that you are becoming. You danced into my life sixteen years ago tomorrow and things have never been the same. I love how completely you love and accept your friends, how you are an advocate for your brother, how you nurture all who cross your path. I love how you sing when you are happy, no matter who is listening. I love the pictures that you draw and the poems that you write. I love how you are eager to get up early with me and go to the gym to swim or work out.

I hope your sixteenth year is good to you and your are good to it. You don’t know it yet, but I am giving you driver’s ed lessons for your birthday. As well as a shopping trip to replace all the clothes you have rapidly outgrown. Next weekend you are going camping with your best friends. We looked for jobs for you this summer, but we are also in the midst of a recession. Thankfully, there are kind neighbors who will pay you to walk their dogs, babysit their children and weed their gardens. I think you will find this work much more satisfying than retail.

You and I were late coming to the autism party. I had no idea that I was on the spectrum until I was diagnosed at age 46. It did not occur to me until then that you might be on the spectrum because you are so much like me. Your diagnosis came at age 14, earlier than mine, but later than Boo’s. But, here we are , one happy autistic family. The only one who has never been diagnosed is your dad, but every therapist who has seen him on our journey agrees with me, dad is definitely on the spectrum, too.

Go forth into your sixteenth year with joy and courage. Shine your love on a sometimes undeserving world. You will find that grace comes in the strangest of places, that angels really do walk among us, and that you can do anything you set your mind to do. All my love, your biggest fan, Mom.

Happy Birthday, Mr. Boo!

Hey, Mr. Boo! Did you know it is your big day? You are 18 years old today. Furthermore, you were born on June 18, making this your golden birthday. Even more exciting, June 18 is Autism Pride Day. How did you know to be born on this day? You are so clever.

You have been my ray of sunshine for 18 years. Even when life has handed you lemons (nights of back to back seizures) you still come out smiling. You wake up with a smile every morning and each day is a new adventure. You are fairly easy to keep happy. You love your early morning snuggles with mom and Gloria. You like to go for long walks with mom and Alissa. You and Peter like to go driving in the car, foraging for the perfect slice of pizza or bowl of noodles. You love it when your daddy tickles you. You like to tease your sister. Dips in the pool and the hot tub are also loads of fun. You like to buy snacks at Wendy’s and go to the park and eat them. You don’t really care about clothes or money, success or prestige. You care if people are good people and are kind to you and their fellow humans. In height, you tower over me, but you still like to sit in my lap and hold my hand when we cross the street. Boo Bear, you will never be too big or too old to sit on my lap or hold my hand.

Your senior year was interupted by Covid 19, but your wonderful school still managed to pull off the world’s coolest graduation ceremony and you loved every minute of it. You haven’t been able to ride the bus since the beginning of March, but I hope and pray that the bus will stop at our house for you in September and you can begin a new career at Focus Beyond, a transition school right next door to Bridge View. There, you can reconnect with old friends and hopefully make some new ones.

I don’t have the words for the feelings in my heart when I think of you, Mr. Boo. Just know that you will always be my sweet boy, even as you now are growing into manhood. I love you forever and then some more. Love, Mom.

Gloria, aka Princess Potty Mouth

Hi all. In a time of chaos, destruction, and gut wrenching sadness I decided to write something to lighten the mood. What is better at lightening the mood then an 11 month old sassy puppy?

Gloria, a toy Australian Shepherd, joined our flock late last summer. She is 14 pounds of fluff, sass, and attitude. When she is grumpy about something, like someone taking her bone (usually a larger dog) she will mutter under her breath and it sounds like she is swearing, thus the nickname. She is a smart girl and eager to please. She knows sit, stay, come, down, spin, shake, and sit pretty. Last night we realized that she knows a lot more. Robert put the dogs out for a late night outing, not realizing that someone had opened the back gate. All three dogs got loose and took off. A few minutes later Robert discovered that all three were on the lam and went out to call for them. A few minutes later Gloria showed up in the alley. Robert called her to him, she came, but then barked and ran off. As she was runnning she was looking back, obviously expecting him to follow her. She led him down the alley and over to the next block where they found Stevie, our blind Aussie. She then aggressively herded him over to Robert and then home. A few minutes later Max showed up on the front porch in high spirits.

Gloria’s actions surprised me because I had not taught her to get help or to look out for Stevie. I had taught these behaviors to Rosie, our last Aussie. Rosie was trained that if somone had fallen she was to go and get help and bring the person to the victim. She was also trained to track and find Boo if he wandered off. I had not taught these actions to Gloria, as Boo has been less of a wandering kind of guy lately. Needless to say I was very impressed. If she already knows how to do a retrieve on another dog, it should not be hard to get her to do a retrive on Boo Bear if he roams away from home.

The other thing I wonder about is if I could train her to be a seizure alert dog. She has yet to alert me if Boo is about to have a seizure, but she is very gentle and careful with him, and obviously concerned after he has one. She will stick close to him, give him kisses, follow me around and make certain that I am taking good care of him. I think at this point, Boo knows when he is about to seize. He will come to me or Alissa, take our hands and get himself to a safe place before the seizure starts. If Gloria is around him enough maybe she can pick up on his cues before I do and warn me. I have known a few verbal epileptics and they have said they have an aura or taste a certain odd metallic taste in their mouths before a seizure hits. I have heard of dogs who can detect cancer or low sugar in diabetes in their owners. I wonder if Mr. Boo smells different to Gloria when he is about to seize. I do not know the answers to these questions, but it certainly gives us something to work on this summer.

Thanks for tuning in. Go forth and be peaceful creatures.

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.