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.

Thoughts from Mr. Boo

I am borrowing a quote from another autism mama, “Thank the baby Jesus in footie pajamas that tonight is a school night!”  Mr. Boo has had a lovely break, but will be all smiles when the yellow school bus shows up at the curb tomorrow morning. He has had many days to sleep in, eat tasty treats, meet his cousins, and visit all his favorite haunts.  But, tomorrow morning is school, routine, normalcy.  He will be a happy camper and so will his mama.

The other night was a sober one at our house, as it probably was at many.  I was prepping Mr. Boo for bed when I received a text from my cousin Paul telling me that a US drone had taken out Iran’s second in command.  I have not felt a pit in my stomach like that since 9/11.  Robert and I tried to keep the concern out of our voices around Mr. Boo, but he is much too savvy for that. I don’t know if he understood all our words (does he have a context for such words as drone, Iran, second in command?) but he certainly picked up the general vibe.  Mr. Boo is highly attuned to vibes.  I try to stay neutral around him because he immediately picks up on how I am feeling.  If I am stressed or sad, so is he.  On the other hand, if I am happy and bouncy, he is over the moon.  We rarely watch television because he is so tuned into to tone of voices and background music and this is very upsetting to him.  At any rate, the night of the drone attack he did not sleep, and neither did we.  He paced, moaned, made banshee noises and bounced off the walls until at least 2:00 am.  Obviously, Mr. Boo is not in the mood to go to war.  He would rather go bowling and eat French fries.

So, Boo, like his mama, is a pacifist. He is my gentle giant.  He does not want war.  I am certain he does not approve of children in cages or walls between countries.  I keep such images away from him, and to the best of my ability, away from his sister.  It is a myth that autistics do not have empathy.  My kids ooze empathy, but may have different ways of showing it. When Mouse senses that Robert or I am stressed or sad, she is quick with a hug.  Mr. Boo will pile into my lap if he feels things are off.  Though some autistics are not wild about touch (I am a bit squiffy about it) my kids love it and need it.  They are huggers, lap sitters, will play with your hair or be all over your personal space.  As a person who really likes her personal space, two kids, three dogs, two hedgehogs and a husband have gradually beaten down my resistance.

So, let’s take some life lessons from Mr. Boo.  Be nice to each other.  Don’t build walls or bombs.  Share your toys.  Pat your dogs.  Smile at people.  Eat cookies.  And, as Alissa would say, “Be good humans.”  Peace, Harriet.

Happy New Year from Boo!

Hi, y’all!  Welcome to a new decade.  Boo wants to know if this means extra treats!  We have nothing really profound to say today, just popping by to say hello.  My muse is still trying to recover from being sociable over the holidays.  She will come out if I ask sweetly and bribe her with lots of coffee.  Otherwise, she is busy being an introvert, hunkering down with Mr. Boo.

Boo just had a fabulous nurse appointment. He has grown an inch and gained 2.5 pounds.  He is 11 months seizure free.  Fingers crossed we make it to January 28, which will mark one complete year without a seizure.  We are totally throwing a party!

Overall, I think Boo had a good winter holiday.  He got to meet some younger cousins, got lots of yummy food and had some nice additions made to his wardrobe.  He got lots of gift certificates to his favorite restaurants, so now he can easily tell us where he wants to go.  Subway is still an old favorite, but Red River Pizza or Pizza Luce is running  close second.  He has enjoyed sleeping in this break, but I am certain he will be thrilled to see his yellow school bus pull up on Monday.  Thankfully, he will still have bus service after he graduates.  The bus will just take him next door to the transition program instead of to Bridge View.  Mr. Boo would be very sad if he did not get to ride the bus, and would consider not graduating just so he could retain his bus privileges.  We will have to have a conversation about this when he turns 21, but for now we are safe.  Luckily, there is always the light rail.

Happy New Year and happy new decade to all of our followers.  Peace out and be good people.  Harriet

My Muse is an Introvert

Hello and happy holidays. My muse seems to have gone dormant and I think I know the reason why.  Robert, the kids and I are introverts.  We like people, but only very specific people (you know who you are) and in small quantities.  In the past month, we have entertained more than we have in the last two years.  Long story short, it has been great, but we are tired!  And, when my muse gets tired and overwhelmed, she clams up.  So, writing has been at a bare minimum.

Today we woke up to a world of black ice.  Even the buses were not running.  When metro transit closes down, you know things are serious.  I put my dogs outside and without even picking up their paws they slid from the front of the yard to the back of the yard.  Surprise! So, I am in my house, with my coffee and my muse just poked her head out of hibernation to say hi.

Boo Bear had a good Christmas.  He does not really go for presents, particularly unwrapping them, but he got a good supply of gift certificates to his favorite eateries.  These are fantastic presents because he know immediately what they are for and he can easily tell his caregivers where he wants to go eat.  Win, win.  He also did really well with friends and family invading his house at all hours.  As long as he could hang in his room with his iPad and come out for the occasional snack, he was happy.  All told, this was probably out most successful Christmas.  I am feeling good because right before Christmas I got all his papers for guardianship filled out and sent in the to the advocacy lawyer.  Now, the ball is in her court.  She will draw up the proper papers, we will meet and shortly before Boo turns 18 we will go to the judge and explain that Boo must be under our care forever, even as an adult. There are a myriad ways that Boo has matured and grown over the years, but he will always need our care and we are delighted to give it.

I don’t make New Year’s resolutions.  I see too many people at the gym starting out a new workout regime in January and giving up on it by February.  I don’t think resolutions really work.  So, instead of a resolution, I will send out vibes of peace and love to you all.  Thank you so much for following the adventures of Boo Bear.  You are his tribe and we love you.

 

Insights from a hedgehog

Hi folks!  This is Sunny, Harriet’s hedgehog.  She just got back from the gym and is in the shower, so I am taking over the keyboard for a bit. Please bear with me, I have tiny paws and it is hard to type fast.  Anyway, as you know my mom had spinal fusion 12 weeks ago today. Yesterday she went back to see the doctor and got cool pictures taken of her back and neck.  The doctor was really happy and said that the bone had fused, just like it was supposed to.  Anyway, he told her that all activity restrictions were lifted and she could do whatever she wanted!  Mom is very happy.  Silly mommy, this first thing she did was to sign up for a reindeer run 5km.  Doesn’t she know how cold it is outside?  It is not even above zero today!  I hope she bundles up.  Anyway, my mom is pretty easy to make happy.  As long as she can run, hang with her hedgehogs and her dogs, and do lots of autism advocacy work, she is a happy camper.  I like it when she is happy because that means I get extra treats.  Oops, I hear the shower water turning off so I have to go.  Ta ta and watch out for Running Mama.