Eat, Sleep, Grow

It’s been a pretty quiet few weeks for Mr. Boo.  He had a great time at the Autism Amped conference and hung out with a bunch of his sorority sisters.  His sibling and her friends ran rampant with the sensory activities and had a great time.  Mostly these days, though, he is focused on growing.  I put him to bed at night and swear that he grew 3 inches over night.  A and I measured him yesterday. Though he was a bit wiggly, we are sure that he is at least 5 foot 8.  In short, he towers over me and now comes up to Robert’s nose.  His feet grew two whole sizes in less than one month.

So, what does this mean?  It means he is spending a lot of time sleeping and eating.   Growing this fast is hard work.  He sleeps hard at night and it is difficult to get him up for his beloved bus in the morning.  We are both looking forward to summer break so I can just let him sleep in.  When he is not sleeping he is raiding the refrigerator.  Cheese seems to be his favorite good at the moment and he eats it by the fistful.  When he is not eating and sleeping he enjoys going to school, track practice, going on adventures with his PCAs, and generally hanging out.  His area track meet for Special Olympics is this Sunday.  He is competing in the 25 meter, 100 meter and 400 meter walk.  We are still working on keeping him in his own lane, as he tends to wander. He, A, and I have a hot date on Thursday at the local track where we will just work on staying in one lane.  More updates after the meet.  Stay ausome!

A Random List of Things

I am the first to admit that I am a luddite and was very late in appearing on the Twitter scene.  Once I arrived I discovered it was a treasure trove of bits of wisdom from people on the spectrum.  What a find!  I found things that made me laugh, made me cry, and just made me shake my head.  In no particular order, here are some of the gems I uncovered.  I cannot give credit where credit is due, but thank you to all you wonderful autistic folks on Twitter.

10 Things Autism Is Not:

  • Autism is not being socially awkward.
  • Autism is not avoiding eye contact.
  • Autism is not lacking empathy.
  • Autistic people do not lack imagination.
  • Autism is not black and white thinking.
  • Autism is not a learning disability.
  • Autistic people are incapable of lying.
  • Autistic people are not polite.
  • Autistic people are good at math.
  • Autistic people do not grow up.

Another point I would like to add is that having a child on the spectrum is not a sure fire way to ruin your marriage.  Autism Speaks floated this idea years ago as a scare tactic.  They claimed, with no facts to back it up, that 80 % of couples who had a child on the spectrum would divorce.  There is no basis for this claim.  Autism Speaks just likes to scare people into thinking that they are the only savior of Autism and salvation only comes via a cure.  I assure you that most autistic adults do not want to be neurotypical or “cured”, and the divorce rate among married couples with an autistic child is about 50 %, much as it is in the rest of the U. S. population.

I want to talk a little bit about masking.  Masking is when autistic folk pretend to be neurotypical.  It is hard work and comes at great cost, but most of us feel compelled to do it, just to be accepted by the rest of the world.  I found this marvelous quote on masking.  Sadly, it was anonymous, so I cannot give proper credit.  “Masking is pretending to be neurotypical. We all do it, spectrum or not.  It’s how we fit in, assimilate.  We act differently at work, at home, with friends, spouse, lover, etc. Folks on the spectrum wear the mask like armor, so you won’t be scared of us.  You don’t know I am autistic, so you expect more of me. But, I see your sideline glances, hear your Rain Man jokes.  But, even though I try really hard to be like you and blend in, there are somethings I cannot do.” The author continues in this vein for a while and then closes with a powerful statement. ”  Sometimes, though I push myself so hard that I get to a point where I can’t mask any longer, and I am not home yet so you will see: My behavior will change.  You may think I am clumsy or rude, aggressive, awkward or weird.  In a child this looks like a tantrum. In an adult it looks like a sudden shutdown without a reason.  Later, after this, I feel angry because I chose to do what you wanted of me over my own self care.  There is nothing wrong with me, nor any real reason I should change myself to conform with your standards of normality.  It’s a burden I carry for you and I wish I wouldn’t do it.”

Okay, so masking it hard.  Sometimes, being on the spectrum is hard. So, what are the positives? Glad you asked! Presenting, Autism: the positives.

Attention to detail: Thoroughness, accuracy.

Deep Focus: Concentrations, freedom from distractions.

Observational Skills: Listen, look, learn approach.  Fact finding.

Absorb or retain facts: Excellent long term memory. Superior recall.

Visual Skills: Visual learning and recall. Detail focused.

Expert: In depth knowledge, High level of skills.

Methodical Approach: Analytical, spotting patterns and repetitions.

Novel Approaches: Unique thought process. Innovative solutions.

Creativity: Distinct imagination. Expression of ideas.

Tenacity and Resilience: Determination. Challenge opinions.

Accepting of Differences: Less likely to judge others.  May question norms.

Integrity: Honesty. Loyalty, Commitment.

I will close with one last quote that I am extremely fond of, and it involves cupcakes!

“Imagine is Autism was described like types of cupcake.  You have some with icing, some with sprinkles, some chocolate, some vanilla, but they are all cupcakes.  ‘But how cupcake is it?’  ‘What?’  ‘Like, is it a little bit cupcake or severely cupcake?’  ‘It…it doesn’t work like that.”

Autism is like cupcakes.  You are either autistic or you are not autistic.  You can’t be just a little or a lot autistic.  Autism is your neurology.  You may have greater or lesser needs for support, but at the end of the day you are still autistic.  But, that is a rant for another day.  Closing in the words of my dear friend, Alissa, “Be good humans.”







Special Olympics and Autism Advocacy

Last night was a great opportunity to talk about two of my passions, Special Olympics and Autism Advocacy.  I was running a table at a resource fair for parents of kids with special needs.  I was representing Boo’s team, the St. Paul Magic.  It was three hours that went by in a flash.  I talked to so many parents that were amazed that something like Special Olympics existed and that their son or daughter was more than welcome to join the team.  Let me explain a bit.  As soon as your child is diagnosed with autism, or just about anything else, the naysayers, the doctors, the well meaning friends and family will immediately jump in to tell you all the things that your child will never be able to do.  To say the least, it is very depressing.  A mom was telling me about this last night.  I asked if these people in her life had crystal balls.  She looked surprised and said, “No”.  “Right”, I responded,” And neither do I.”  Only time, patience and work will be able to tell us what your child is capable of.  Your doctor did not receive a crystal ball when he got his MD.”  She thought about that for a moment and smiled. I continued, ” I am here to tell you what your child can do.  Your child is welcome to join our team, in whatever capacity he is able, and he will be loved and accepted.  Please, join us!” I gave her our schedule, our business card and a list of the sports we play and she departed, smiling.  I had multiple, similar interactions throughout the night.  It was such a blessing to be able to say to parents, “Yes, your child can do this. Please come!”

Parenting a child with autism can be a lonely road.  Your child probably cannot join in the things his typically aged peers can do.  People look at him oddly when he stims in public, or goes mute when you look at him.  Parents go without self care, dates, vacations, etc. for years.  We just keep putting one foot in front of the other and go on.  But,  when the rewards come, they are so rich. Your child reaches a new milestone, says or signs a new word, goes for a month without a seizure, the list is endless.  These are the fleeting moments that make everything okay.  We live for these moments.  Special Olympics helps provide these moments.  Special Olympics lets you see your child stand on a podium after a track meet, medal around his neck, when his PT, OT, whoever, said he would never be able to walk.  Special Olympics brings lonely parents together, united as a single force.  If your child is 8 years or older and has a disability, they are welcome at Special Olympics.  If you have a neurotypical child who would like to participate, they can become a Unified partner.  This is available to parents and guardians as well.  I am a Unified partner and this lets me be with Boo Bear when he competes in track and field. Alissa is his Unified  partner when he competes in bowling.

I have said it before and I will say it again, no one has a crystal ball.  You are under no obligation to listen to the naysayers.  You don’t have to let you them have access to your child or teen.  I know who believes in Boo Bear and who does not.  I am very choosy about who I let come in contact with him.  He has a wonderful support team and Special Olympics is part of this.  If you would like your child or teen to be involved in this wonderful organization, please shoot me an email or DM and I will help you get started. Peace and blessings. Harriet



Strike Averted!

Just a quick note to let my readers know that the St Paul teacher’s strike was averted.  A compromise was reached early Monday morning.  I do not know the details of the compromise, but I hope it brings the teachers the necessary supports that they were asking for.  Mr. Boo was blissfully aware of all of this turmoil.  He happily trundled off to school, oblivious to the fact that there almost wasn’t any school today.  Parents and teachers around the district heaved heavy sighs of relief.  To all the St. Paul teachers out there, thank you so much for your hard work.  Thank you for taking such good care of our kids.  Sincerely, an Autism mom.

Tears In Heaven

I was having lunch the other day with one of my favorite people, my friend Ellen.  She was my piano instructor for years, has since retired, but we meet up every few weeks and yak for hours.  We met at our favorite coffee shop on Friday at noon and proceeded to chat until they closed the doors on us at 3:00 pm. Ellen also has a son on the spectrum, B.  He is 34, has graduated college, but is still living in her basement.  We talked about how mothering a child/adult on the spectrum never ends, they will always need us.  This led us to an interesting question, what would our sons be like if they were not on the spectrum?  If Boo did not have autism would I recognize him?  You only have to spend a few seconds in his presence to know that he is not a neurotypical kid.  With B, it takes a little longer, but it soon becomes clear that he marches to the beat of a very different drummer as well.  Boo was diagnosed when he was 2, B was diagnosed in his early 30s.  Ellen says the diagnosis explains a lot of the difficulties he had as a child and has had as a young adult.  For some reason, this got me thinking about the Eric Clapton song, Tears In Heaven.  “Would you know my name, if I saw you in heaven, would you be the same, if I saw you in heaven?”  However, I remembered this first lyric incorrectly and thought it was “Would I know your name, if I saw you in heaven?” If there is a heaven, and everyone is made new and whole, would Boo not be on the spectrum?  If he were not on the spectrum, would I know him?  Everything about Boo is different, the way he moves, the noises he makes, how he flaps and drums his hands continually, the list goes on and on.  Ellen and I wondered if there was a line where the autism stops and our sons start.  I don’t think that there is.  I think it is all one big gumbo soup.  I can’t take the autism out of Boo, and I don’t want to.  Someone once asked me if I had a magic wand and could wave it and “cure” Boo, would I do it?  The answer is an emphatic no.  Boo does not need to be cured because Boo is not sick. Boo is Boo, plain and simple.  Now, if I could wave a magic wand and make his life easier and the world more tolerant of differences, I would do it in a heartbeat.  Boo and B do not need cures, they need support, empathy and understanding.  They need a kinder more gentle world.

So, my thanks to Mr. Clapton for giving me something to think about, even if I remembered his song incorrectly.  The song was written for his late son and not about autism, but I think it is still fits.  Boo, I will always love you, in heaven and on earth.  I pray that I will always know you and you will always know me and feel my love.  And, to my readers, if you have some time go to YouTube and pop up some Eric Clapton, he is always a pleasure to listen to.

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