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.

Why Grieve?

Nearly sixteen years ago Boo received his autism diagnosis.  The diagnosis was told to me in somber tones by a well meaning psychiatrist who claimed that he would make little progress and would probably not amount to much.  Luckily, I chose not to believe her.  Friends and colleagues asked me if I had taken time to grieve.  Apparently, this diagnosis was supposed to throw me into a deep pit of despair.  Obviously, it did not.  I threw myself into learning everything I could about autism and getting him the supports he needed, but I never grieved the fact that my son was not neurotypical.  I have a great kid, I told myself. Why should I grieve?

Last week, I was sitting in a similar conference room hearing that my second child had just received an autism diagnosis. Luckily, no one suggested that I should grieve.  Instead, the psychologist pointed out Mouse’s strong suits and the things that she was good at.  She made it clear that Mouse did not have to tell anyone about the diagnosis if she did not want to.  It was her information to do with as she wished.  Mouse is very open about being autistic, in fact wears it as a badge of pride.  She, and I , and the rest of the family proudly belong to the tribe of autistics.  No shame, no grief.

I am glad to see that times have changed a bit.  If your child was just diagnosed, remember that he/she is the same child whom you love and adore that he/she was yesterday.  There is not reason to grieve or mourn.  No one has died.  No one is sick.  No one needs a cure.  What do we need?  Understanding, empathy, an occasional accommodation.  What don’t we need? Sympathy.

I think every family who just had someone diagnosed as being on the spectrum should get a welcome basket.  In this basket would be endless supplies of coffee and fidgets, ear defenders, sensory toys, weighted blankets and resources to call for help.  We should throw parties for people who were just diagnosed because they have brains which work in magnificent ways.  I am not ashamed of my diagnosis. My children are not ashamed of theirs.  We do not need a cure.  We do not need your sympathy or grief.  Coffee and dog walks, however, are always cheerfully accepted.  Carry on, friends.

All mothers are working mothers

I sincerely believe that all mothers are working mothers.  Period.  I don’t care if you work outside the home, inside the home or both, congrats, you are a working mother.  And, surprise, no one pays you overtime!

I am not at all complaining about my job.  Taking care of Boo Bear and Mouse is the best thing I have ever done.  I have worked retail, run an outreach ministry for the homeless, taught, tutored, nannied, and mothered.  Sometimes I did a whole bunch of these things at once.  I have no regrets about these things, either.  But, for now, I am an autism advocate for Boo Bear and Mouse and I work from home.  So, I was surprised when yesterday a relative left me a voice mail from her vacation down south.  She said that she was on vacation and thinking of me because “you are always on vacation.”  That phrase, probably well meant, stopped me cold.  I am on vacation?  Really?  Robert and I have had exactly two dates in the last 18 months.  We have ventured no farther than Duluth together in over a decade.  Though Boo did great at our Friendsgiving, he was awake that night until 3:00 am, and the Gloria got up at 4:00 am.  I was running on coffee and fumes the next day.  Add to that the fact that Robert and I always sleep with at least one ear open in case Boo has a seizure.  Our living room has a video monitor of Boo’s bedroom and our bedroom has an audio monitor so we can hear the first signs of distress.  We don’t sleep a lot around here.  I am not certain how Robert does it because he does not worship the goddess of the coffee pot like I do.  As my children will quickly tell you, their mommy is a coffee junkie.

So, gentle reader, please be kind to your fellow mothers.  All mothers are working mothers.  We run on love, coffee, grit, and the occasional thank you.  We don’t get paid in ways that show up in our bank accounts.  I am lucky as I get paid through the state to care for Boo, but this is only for 24 hours a week.  Some weekends, Robert and I work 24 hours a day.  Parenting autistic teens while being on the spectrum ourselves in not an easy task.  Fortunately, we love our task.  And, Robert gets to go to work at an office and talk to “adult people”.  But, please, do not assume that we are on vacation.  To be quite honest, we could not recognize a vacation if we saw one!  Peace out and be good people.