Summer 2019

Mr. Boo, it seems it was only yesterday that you stepped off the bus and began the summer leading to your senior year.  I am sorry to see this summer end.  I don’t blame you and your sister for stomping out of the room when I foolishly suggested going back to school shopping.  I don’t want this party to end, either.  The three of us have done so much this summer;, you, me and Mouse.  We have walked hundreds of miles around St. Paul, on roads and on trails.  We have tested out the swing sets at multiple parks.  We participated in our first 5km and raised money for Parkinson’s research.  You ate vast quantities of food, slept it off, and then woke up to re-raid the refrigerator.  You and your sister grew so fast!  You both tower above me and like to pat me on the head.  But, in public, you both still reach for my hands, and we walk down the sidewalk together, and unbreakable trio.  I am so blessed!  How many mamas still get to hold hands with their teens in public?  Boo and Mouse, I will always be there to hold your hands, or be your lap to sit in, even when your legs spill all over the floor.  From Mr. Boo I learned the importance of the perfect juice box, and that apple juice in a cup just will not do.  From Mouse I learned that apple juice will just not do, period.  Thank you for the tips.  Mouse, you traveled to Ireland this spring and Montana this summer.  You eagerly donned a backpack and hiked for miles in the mountains.  You kicked and punched and leaped your way into your third degree brown belt.  Though I am sorry to see summer end, I am eager to begin Kung Fu again with you in the fall.

There is so much to do now. Mr. Boo needs his senior pictures taken.  I have found the perfect spot by a waterfall at your favorite park.  Mouse, I need to buy you new clothes because you outgrew everything and take you to orientation at your new school site.  But, I am not yet ready to put these plans into action.  Summer is fleeting.  We have two more weeks.  I just want to savor this time with you.  Soon enough you will shed sandals and don backpacks.  Soon enough, we will all return to a new academic year.  But for now, I just want to soak up this time with you.  Love for now and always, Mom.

Things To Ponder

A few days ago a friend approached me with an interesting question.  Her son is on the spectrum and she wondered if he had children, if they would be on the spectrum, too. I told her I would do some research (my favorite thing) and get back to her.  Providing her with any useful information proved harder than I had thought.  My first stop was checking out the websites of the CDC and NIH.  They gave the generic definition of autism, and said that in boys autism occurs in 1 out of 59 births, and in girls 1 out of 159 births.   Boys are four times more likely to be diagnosed. Immediately, I was disappointed.  These were old statistics.  The male ratio might be correct, but the female ratio is grossly wrong.  Talk to almost any autistic woman and they will generally tell you that they spent most of their early years masking, they may have gotten diagnosed much later in life (I was 46) and have a slew of other diagnoses that may or may not be incorrect.  The tests used to measure autism are set up to measure males, not females.  So, despite my disappointment, I soldiered forward.  I wanted to know what the chances were that if one parent had autism, what are the chances that the children would also be on the spectrum.  Even more interestingly, I wanted to know what the odds were of having an autistic child if BOTH parents are autistic.  If found….nothing.  Absolutely nothing.  The bulk of information was on early identification in males and early intervention.  There was no information on late diagnosed women or men.  I don’t know if this is because there is no interest in this area, or if the CDC and NIH are so cash strapped they simply can’t fund the studies.

Since these two sites provided me with crickets, I looked in other areas.  Modern Psychiatry gave me some tidbits.  A recent article claimed that  “ASD rates were highest when the father was aged 35-44 and his partner was more than ten years younger.”  This perked up my ears.  Robert was 42 when Boo Bear was born, I was 31.  He was 44 when Mouse was born, I was 33.  Boo was diagnosed at age 2, Mouse at age 14.  (Remember what I said in an early blog about girls flying under the radar? Mouse and I are both really good at that.)  The article went on to say that about 50 percent of people with ASD also have a developmental delay.  Neither Mouse nor Robert have a DD.  Boo definitely does.  I am known as what is “twice exceptional”.  I am gifted in some areas and severely delayed in others.  Though I soared through graduate school, I cannot do math above a sixth grade level.  Though my verbal skills are off the chart, I cannot even manage basic algebra.

Quora also chimed in.  ” Is the risk that children of autistic people will be autistic too?”

“The simple answer is yes.  Although the geneology of autism is complex and far from being solved , there is great suggestion from studies undertaken that autism is hereditary.”  In a 2017 study it was found that ASD is 33 percent more hereditary than thought.  They estimated that around 83 percent of cases where a child was diagnosed, others in the family qualified under diagnostic criteria, too.  , Many female adult autistics with whom I have spoken said that their diagnosis came after their child’s diagnosis.  Many of us, myself included, did not recognize autism in our daughters because their behavior was so similar to ours that we did not think that anything was out of the ordinary.  Often, it takes someone completely outside the family circle to realize that something is different.

The last study that I found was published June 18, 2019 in JAMA Psychiatry.  “Among families in which both parents scored highly on a test of autistic traits had an 85 percent increase of autism in their children.  And among families in which one parent had a high score, the risk rose by 52 percent, compared with families in which parents had lower scores.”

So, in answer to my friend’s question, yes there is a risk of an autistic parent having an autistic child.  Chances are lower if the father is young and if the mother and father are closer in age.  But, basically what my delving about on the Web showed me was there are not enough studies, particularly in this country.  All the resources seem to pour into early childhood intervention.  No one seems to care what happens when these children grow up.  Darker forces, like Autism Speaks, talk about Autism like an epidemic that must be “wiped out”.  Frankly, I think Autism Speaks is a money loving organization that portrays Autism as the Boogey Man.  I don’t believe Autism is on the rise and certainly do not see it as an epidemic.  Autistics have always been around.  We may have gotten different labels, thrown in institutions, or just thought of as eccentric, but we did not just suddenly appear in the last two or three decades.

People who are Nosey Parkers have asked me if I knew I was autistic before I had children, would I have had children in the first place?  The answer is twofold: One, it is none of your d–n business, and two, yes I would.  Boo and Mouse are the lights of my life.  I cannot imagine the world without them.  They are both amazing kids with their own remarkable skill sets.  One is highly verbal, one never says a word.  Autism Speaks says that they should be eliminated, or at least have ABA drilled into their heads so they do not appear to be so (gasp!) autistic.  I am calling BS on this narrative.  Autism is not an  epidemic.  Autistics are a force to be reckoned with.  We should not be subjected to ABA so that we can pass as neurotypical at the danger of our own mental well being.  Like everyone else, we are born, we live, we learn, we love, we eventually die.  We are not a threat.  As Temple Grandin says, if there were not autistic people who saw the world in an unique way, we could still be living the life of the cave man.  Stim on, my friends.

Lesser Known Signs of Autism

Though Autism awareness is on the upswing, there are still many folks, particularly women, who fly beneath the radar and never get diagnosed.  Often, it is because we are so good at “masking” and acting in socially acceptable ways, that no one, including our doctors or parents, suspect a thing.  We may be seen as a little quirky, or odd, but that is it.  The other day I ran across a list of less commonly talked about Autistic traits and I wanted to share them.  So, without further ado:

  • Poor or abnormal posture
  • Trouble with directions or being able to tell left from right
  • Disinterest in sports or physical activities
  • Rituals with no outcome
  • Large or unique vocabulary
  • Lack of organization
  • Intense compassion or empathy
  • Intense anger or no anger at all
  • Connections with animals
  • Difficulty understanding pop culture, styles, trends, etc.

I read this list to Mouse and to her friend and we resonated with all of these characteristics.  Mouse has good posture.  Though I have really been working on my posture the last few years, I tend to slouch.  Mostly, this is from a lifetime of trying to blend into the woodwork.  For the life of me, I cannot figure out directions, read a map, or tell my left hand from my right.  Until I was in my teens, I had no interest in sports.  Even now, the sports that I do are mostly individual and solitary. I can’t speak for Mouse on this one, but I have multiple rituals that I do which I find soothing, but serve no real purpose.  Since both Mouse and I have been able to talk, we have had huge vocabularies and read voraciously.  Over the years I have gotten more organized but it is still a struggle.  Mouse and her friend also resonated on this point.  All three of us have intense compassion or empathy, but often have trouble expressing it.  Though I have a fairly long fuse, my anger, when it gets going, can be formidable.  Both the girls and I connect deeply with animals and mostly prefer them to people.  As for the final one, I never have had or will have any understanding of trends or pop culture.  I go to the movies maybe once a year.  I don’t understand most memes.  I choose my clothes on the basis of comfort and deep pockets, not looks.

I liked this list and mean to share it with many people.  I urge my readers to do the same.  Autism is not something that is scary or needs a cure. Autism is not a bug in the system, it is just a different operating system.  Peace out, y’all.

 

 

 

Non verbal? Pre verbal? Does it matter?

I had an odd dream last night.  I often about dream about my children, and when they were little I had a recurring dream in which Boo Bear could speak.  This dreams always delighted me at the time, made me so happy, until I woke up feeling bitter sweet.  I have not had such dreams in years, until last night.  In the dream, Boo Bear was speaking in clear, concise sentences.  We chatted about a number of things, that were not that important, but still filled me with joy.  In this dream I was puzzled as I could not see his face.  I am used to him not making eye contact, but not being able to see his face was weird.  In the end he turned to me and I realized that the speaker was not Boo Bear at all!  It was a sturdy looking child with blond curly hair and no glasses.  Anyone who knows Boo knows that this just does not fit.  Then, I woke up. Unlike the dreams I had when he was little, this dream was not bitter sweet.  I am no longer torn to pieces over the fact that my son does not use his lips to communicate.  He uses so much more.  He can sign, he can gesture, he can use his Ipad for any number of things. He can roll his eyes at his parents and give his sister a magnificent side eye.  Boo can express his needs and opinions just fine, without saying a word.

When discussing kiddos who do not speak people often use the terms non verbal or pre verbal.  Pre verbal sounds a bit more hopeful, as if the skill just has not manifested yet.  It can be a good description for a toddler.  Pre verbal is not such a good description for a 17 year old male.  Non verbal, as a description, does not really work either.  The Ipad says quite a lot for Boo.  The other morning he woke up with pasta on his mind.  His first request of the day was to go to Noodles and Company and have pasta prima vera.  Noodles is not open at eight in the morning, so I told him we would just have to wait until lunch time.  He continued his requests throughout the morning until we finally got in the car and drove to the restaurant of his choice.  He walked in the door and without a pause set his iPad on the counter and requested a bowl of pasta prima vera. This does not strike me as non verbal.  He knew exactly what he wanted and how to get it.  When the dish of noodles arrived he ate it with great relish.

So, how do I describe my son?  If I just say he is autistic people immediately want to know if he is high or low functioning.  If I say he is non verbal people act like this is a tragedy. But, Boo is not a tragic figure.  He laughs often and loudly. He loves to go for walks, to the pool, to Lynx games and out to dinner.  He spins in his swing and hoots with glee.  Obviously, he is not wasting any time feeling sorry for himself.  So, neither do I.  I don’t think he wants to be described as high function or low function or pre verbal or non verbal any more than I do.  If you want to get his attention, I would suggest calling him by his name.  If you sweeten the deal with a promise to a trip to Dairy Queen, you will probably get a smile.  Enough said.

Autism on the run

A few weeks ago I wrote about Boo Bear and his Special Olympics track meet.  He really enjoyed it and we were sad to see the track season end.  Shortly after, I saw an advertisement for a fun run/walk to raise money for Parkinson’s research. This is an area near and dear to my heart, so without further ado, I signed Boo Bear, myself and his wonderful PCA, A, up for the race.  With the help of our lovely followers, thank you, thank you, we raised over $300, all of which will go straight to research to help combat this horrible disease.

Race day dawned clear and warm.  We found ourselves at Harriet Island with a herd of others runner and walkers, most of which wore shirts either in honor or memorial of a person whom they loved.  The course was a simple, flat, out and back loop.  The runners took off with the gun and the walkers happily ambled along.  Boo Bear, not being in a competitive mood that day, was a happy ambler.  About 50 minutes later we reached the finish line, finishing hand in hand with smiles on our faces. Mr. Boo was happy to discover volunteers who would shower him with potato chips, water, and praise.  It was a good morning.

The run was not yet over for the weekend. The next evening we had family tickets to a Lynx game.  Boo Bear loves to watch basketball games, from professional WNBA games to pickup games at the Y.  The noise and crowds did not bother him a bit.  He happily watched the game, stimmed with his Ipad, and munched nachos.

It is easy to conclude that for Boo Bear, it is summer time and the living is easy.  He finished ESY with flying colors, and is on target or has met his goals and objectives.  Though few things make him happier than seeing the yellow school bus pull up in the morning, he is now happy to sleep in rather than get up at 7:30.  Once he is up he enjoys trips to local eateries, long walks, playing on his swing and trips to the Y.  He is a pretty easy kid to please.  Right now he is sleeping the sleep of the just. Soon he will wake up and we will begin a new day of adventures.  Thanks for following us and thank you for your donations to Parkinson’s research.

Summer Days

Mr. Boo, you have grown and matured in ways that almost defy description this summer, and it is only early July.  Though you are very sleepy every morning, you still are happy to greet the yellow school bus as it chugs onto our block.  You hop on board without a backward glance.  When you come home, we walk for miles, exploring the neighborhood, the parks, the mall.  We watch the baby birds and bunnies grow up around us, laugh at kids playing in the sprinkler, and in general, have a good time. Sometimes, we go to the Y to walk laps or swim.  You love to watch the pickup basketball games.  You are so easy to please.  A trip to Subway delights you.  A twenty five cent gumball almost puts you into rapture.  A small price to pay for your happiness.

Friday is your last day of summer school.  Now, you will officially become a senior!  It seems like only yesterday that you started your school career at Bridge View.  I can never express my deep thanks and gratitude to the amazing staff that works there.  You won’t go far away when you graduate, just across the parking lot to Focus Beyond, where you will have another three years of adventures and milestones.

This weekend we have a new adventure.  You, Alissa, and I are participating in a 5km run/walk to raise money for Parkinson’s research.  I am going to run the race, then loop back to find you and Alissa, and then walk you in.  This will be different than Special Olympics, but I think you will find it to be just as fun.  If you like this, there are may more races to do for good causes.  I am delighted to get to share this part of my life with you.

There is so much I want to tell you Mr. Boo, but I hardly have the words.  You make my life complete.  You make our family complete.  You will always be my one and only Boo Bear.  Love, Mom.

 

Semper Gumby

Boo Bear and I spent last weekend at the State track and field event for Special Olympics.  He did very well, bringing home a fourth place in the 100 meter walk, a second place in the 25 meter walk and a gold in the 400 meter walk.  It was at the beginning of the 400 meter walk that I learned the marvelous phrase, “Semper Gumby”.  The athletes and their coaches were all in the staging area getting ready for their race.  Next to us sat a young man, A, and his dad. A is like Boo Bear and pre verbal, though he did bark when excited.  We lined up to go out on the track. Suddenly, A wrestled free of his dad, darted around me and ran back to a table. The cloth on the table was askew and A began straightening it. Once it was properly squared he rejoined the rest of the athletes. His father just shrugged and said that this was A’s thing. The race official chuckled, looked at me and said “Semper Gumby.”  “Always Gumby?” I asked.  “Yes”, he said.  “Always flexible.”  “Yes”, I said,  “That is the perfect phrase, I will remember this.  Thank you!”

The officials lined up the athletes. A was in lane 7 and Boo Bear and I were in lane 8.  The whistle went off and sent up on our way. Coming around the bend in the track and by the bleachers I noticed a big university banner. A noticed it too, and the fact that it was askew!  Suddenly, he darted out of his lane and into ours and began frantically fixing the banner.  The officials all started yelling at him to get back in his lane but he was not to be deterred.  Once the banner was fixed to his specifications, he decided to rejoin the race, but now he was confused as to what lane he should be in. He wandered over into lane 2. Officials are not allowed to touch an athlete without disqualifying him, so they resorted to yelling directions at him and waving flags. This only disoriented A further.  I was a yard or so behind him, watching this unfold.  I lowered my voice under the din and said, “A this is Harriet. I am in lane 8. Go to lane 7.”  Amazingly, he heard me, turned around, looked me in the eye and went back to his correct lane!  He, Boo Bear and I continued to push forward.  At 100 yards to go I saw A’s dad at the finish lane.  “A”, I said.  “There is daddy. Go to dad.”  We lengthened our stride and the three of us crossed the finish line together.

I love Special Olympics for many reasons. It is a venue just for athletes to be athletes.  No one is pandering to them or telling them how inspirational they are.  Athletes run and swim, do gymnastics and play basketball just for their love of the sport.  As I coach I feel honored to be a part of this experience. And, in the back of my mind I always keep that phrase, “Semper Gumby.”