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.

Who Ordered the Banshee?

For a person who does not like a lot of noise, Boo Bear can be one of the noisiest kids I know.  On one hand, this is good, it is easy to track him.  As long as I can hear him hooting and laughing I know that all is well in his world.  If he suddenly gets quiet I drop everything and come running because I know he is into something that he should not be into.  In an ASD household, silence is never golden, it just makes me really suspicious.

Like many kids on the spectrum, until he was on meds at age 4, Boo Bear was a lousy sleeper.  Well, put it this way, he just did not sleep, at all.  Robert and I were zombies for years.  After we got him on the right combo of meds he finally began sleeping.  On a good night he will sleep 11-12 hours.  But, once in a while, something sets him off and he pulls an all nighter. Last night was one of those nights.  Maybe it is because it is the end of vacation and though he has been super good for 2 weeks, he is ready to go back to school and his routine.  Maybe it was because of the super moon, which was so bright on the snowfall that it was still light outside at midnight.  His room does have blackout curtains, but he was up anyway.  Around 8:30 he indicated to me that he was ready to go to bed.  We did the usual bedtime ritual and got him tucked in, turned off the light and shut the door.  Boo decided it was time to start the party.  He bounced and hooted and flapped.  He made his infamous banshee noises.  We brought him out a couple of times.  Once he wanted more to eat, another time he wanted to use the toilet and get a drink.  Both times he willingly went back into his room, but he did not settle down.  From 9:00 pm until 5:30 am he bounced and shrieked happily.  At 5:30 I gave up on getting any sleep and headed for the gym.  I had a good workout, showered, got some coffee and headed home.  I walked in the door at 8:00 am and the banshee noises were still going strong.  I went in to see him and was greeted with a sunny smile.  He was delighted to see me!  I gave him his morning meds and he disappeared downstairs to spin like a whirling dervish on his beloved swing.  After half an hour of vestibular stimulation, he came back upstairs, ate ravenously and sank into a hot bath, where he is now.  I am hoping this settles him a bit.  This will definitely be a day where we get out and about.  At is is minus 7 F outside, we may have to be mall walkers, but that is okay.  I just need to get him out and moving.  I suspect that once he gets back into his school schedule tomorrow things will slide back into place.

So, I am curious, do other ASD families have pet banshees that only come out at night?  Do they come out more strongly when it is a super moon?  I am pretty sure that I did not order a banshee for the occasion and Robert said he did not, either.  This leaves one of the three dogs as a possible culprit.  My suspicion is that Max, our Springer Spaniel, probably figured out how to access Amazon and ordered a banshee. Okay, Amazon, the party is over.  What is your return policy?  I would like to return one shrieking banshee.  I will happily keep the kid, but the banshee needs to leave.  I just don’t have enough coffee at my disposal to handle another night of banshee noises.  Thanks!

All I Want For Christmas

All I want for Christmas is impeachment, but that is not what this blog is about.  I can still hope, though!  Tonight was a typical Saturday night chez Herndon. Boo was rocketing back and forth between the kitchen for food and his swing where he could properly hoot and twirl.  Robert and Mouse were off at a Christmas party, but Boo and I were rocking our inner introvert.  Eventually, I corralled Boo and headed him towards the bathtub.  His nails resembled talons, particularly one thumb nail that he was not letting anyone near.  I had my sights set on that nail.  Well, all I got was that one nail.  Boo was not going to let me near the rest of them.  I gave up and he happily let me shampoo his hair.  He is all about a good scalp massage.  While I was thus engaged I thought to myself, “All I want for Christmas is my kid to be able to cut his own nails.”  I realized immediately that I wished in vain.  He does not have coordination to button his shirt, let alone cut his nails.  Oh well.  I guess I am his life long nail clipper.  My awesome sister-in-law also has a kiddo on the spectrum with nail issues.  She got around this when she discovered that he likes mani pedis.  It is a bit expensive, but it solved the problem.  Somehow, I just can’t picture taking Boo to an upscale salon and turning him loose.

So, what do I really want for Christmas, both for Boo and for my family?  I want my home to be a peaceful, welcoming haven.  We don’t usually have family for the holidays, but I make a point to invite people over who also do not have family in the area.  I invite them to invite their friends.  Sometimes I only have a handful of folks, sometimes I have a  houseful.  This year Mouse is having a friend from school over.  Her parents are on the outs and she prefers to hang out over here.  Her mom and younger siblings are going to Mexico, her dad is staying home and she decided she would rather be with us.  Very good.  There is always room for another chair at the table and a place for more gifts under the tree.  So, I want peace.  I want Boo to feel this peace.  Christmas is hard for him because it disrupts the flow of school and his PCAs are not around.  He does not like to open presents and he does not like his schedule disturbed.  Over the years he has been better able to accept the changes that Christmas brings, but it is not his favorite season.  I don’t care that he does not want to open gifts.  I have a few things I hope he will enjoy and I will leave them out for him, unwrapped, so he can approach them at his leisure.  I want decent weather so I can take Boo out for the long walks that he craves.  He does not like to play in the snow or go sledding but he can walk for miles.  I want acceptance for my child and for all the other children and adults on the spectrum.  I want acceptance for those who march to the beat of their own tuba,  because their music is beautiful, too.  I want universal health care (yes I am getting a bit political here) so parents don’t have to worry how to pay for the therapies and doctors that their child so desperately needs.  No one should have to mortgage their home so their child can have speech and occupational therapy.  I want peace for all of you who so faithfully follow my blog, and for your children too, on or off the spectrum.  So, I may never see the day where Boo cuts his own nails, and it is not that important a wish anyway.  But, I can hope, pray and work for peace, in my house and in my neighborhood.  Won’t you join me and do the same?

 

 

%d bloggers like this: