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.

A Day in the Life of Mr. Boo

Hi there, this is Mr. Boo taking the helm.  Daddy is out of town this week in California and mom and I are running the show.  Actually, Gloria the puppy, thinks she is running the show, but she is just silly.  Last week she got spayed and is now wearing the cone of shame.  She is so small the vet had to use a cat cone. Gloria is disgusted. Not only does she have to wear a cone, it has pictures of cats all over it!  This still does not stop her from waking me up with kisses every morning.  Mouse has spent a lot of time out with friends this weekend.  Mom says that what teenagers do.  I don’t know. I have friends, but I also really like staying close to home.  I don’t need mom by me every second, but I like knowing that she is around. Besides, who knows when I might need a treat?

Weekends are pretty low key around our house.  I get to sleep late, which is nice. Eventually, mom and Gloria wake me up.  Sometimes I hang out with mom and dad, other times Peter comes and takes me on adventures.  My new favorite place is Red River Pizza in Minneapolis. The manager there knows me by name.  I like their pizza so much mom is thinking of having them cater my graduation party!

On weekdays I get up early and get on the bus. Then I go see teacher Sonia and my friends. After school I sometimes hang out with Jill or Alissa.  This lets mom go to her piano and Kung Fu lessons.  A lot of the time Alissa takes me to the Y to swim.  I love to play in the water but I am tired of all the people who stop Alissa and ask about my “disability”.  Can’t you see I am just a kid trying to have fun? Alissa is here to take me swimming, the autism just sort of comes along for the ride.  Instead of bothering Alissa, or worse yet, hitting on her and my sister, why don’t you just smile at me, wave, or give me a high five?  I won’t bite and autism isn’t catching. Sorry, you can’t catch autism from me and then become automatically cool.

After swimming I come home and eat lots!  For a long time I did not have much of an appetite and mom was really worried.  When I eat, she gets really happy.  This works out well because I like to eat and she likes to feed me.  The dogs hang out right by my feet because I sometimes drop things.  After I eat I take a bath and then hang out with my parents or my sister for a while.  Eventually, after my meds, I get sleepy and mom or dad gives me my night -night treat and I go to bed.  I like my bed.  It is super cozy and has lots of handmade blankets made by people who love me.  Sometimes I sing or talk to myself until I go to sleep.  When I wake up in the morning, Mom and Gloria are there to say hi.  It may not be the most exciting life, but it suits me just fine.  Final note to perfect strangers, please do not use me as an excuse to hit on Alissa or my sister.  It’s really rude. Just give me a high five and go on with your day.  Thanks, Boo.

PSA

Hello!  This is a public service announcement from Mr. Boo and his faithful sidekick A.  When my son is in public, please do not come up to A and ask if he has autism.  It is, really, a rather personal question.  And, Boo can hear you, deafness is not his problem.  Then, after you have established that my son is on the spectrum, please do not tell them how much you know about autism because your (choose one or more) niece, nephew, godchild, neighbor, neighbors neighbor, etc. has a child on the spectrum. This does not make you an expert! This occurred the other night at the Y while A and Boo were swimming and minding their own darn business.  A man came up and demanded to know if Boo were autistic.  A said that he was. Boo decided that the man was boring and began to swim away.  A tried to follow.  The man, not taking a hint, followed her. He talked on and on about how his nephew was autistic, what a tragedy it was and how his sister was wasting her entire life taking care of him.  At this point, Boo submerged himself to get away and A followed suit.  The man eventually got the hint and left. Ugh. All they really wanted to do was swim some laps.

Anyway, if you know something about autism, good for you.  I encourage you to learn some more.  Please do not share your knowledge with my employees and in front of my son.  It is uncomfortable for everyone involved.  Boo is funny, intelligent, compassionate and has a killer sense of direction.  He is all these things and more, and oh yes, he is autistic.  The issue at hand is not a processing error, it is a completely different operating system.  Please respect other people’s operating systems and let them swim in peace.  Rant over.  Be good people.