A Dad's Journey

Father of Autistic Twins Speaks Out

This Op-Ed piece from Steve Silberman (author of Neurotribes: The Legacy of Autism and the Future of Neurodiversity) is trending in today’s NY Times.  I think it’s a very even handed commentary on a societal issue, namely when authorities have no experience with autism.

policehttps://www.nytimes.com/2017/09/19/opinion/police-autism-understanding.html?ribbon-ad-idx=15

Now that school has begun, it’s been a shock to everyone’s system.  The boys’ bus arrives right at 7am.  Susan starts waking the boys around 6am, so there is time for the morning ritual of getting cleaned, dressed and fed.  I’ve never been a big fan of having teenagers waking at ridiculous hours to accommodate the school’s schedule, but god forbid, we make that a priority.

To compound this dilemma, my son Sean has not seen the memo that says he needs eight hours of sleep.  You know the one that says he should be in bed by 10pm.  In fact, his manic self is only reaching new crescendos around that time.  If he is in bed by Midnight, that is a good night indeed.  It wasn’t as bad during the summer ESY (Extended School Year) because they were being picked up at a more reasonable 8am.

I am considering melatonin as a sleep aide.  Quite frankly, it’s as much for me as it is for Sean, because Daddy is dragging his ass all day long.

With luck, we will start to settle into a semblanceteenSleepProb-enHD-AR1 of a routine and Sean will start winding down closer to 10pm.  I only hope that one day, he reads that memo about sleep.

So the latest OCD behavior that my son Sean is manifesting is his refusal to use public bathrooms or port-o-johns.  Granted, most of us find those places a bit skeevy, but in a pinch, you use what you’ve got. Now when we take Sean to the beach, we have to make sure he has successfully gone to the bathroom until we get back.  Of course, that never works.

Lately, he has simply resorted to wetting himself in his bathing suit.  I have tried to shape this behavior (A.K.A. try to get lemonade out of this lemon situation) by having him go down by the water’s edge and splash around a bit.  This way, the resulting wet spot looks simply the result of the surf.  I then gently pour a bucket of ocean water over the spot to wash it away.  Of course, my OCD son then wants a dry bathing suit, but we have managed to aleve this need by quickly wrapping him in a towel and letting the sun quickly dry out his suit.

It’s all make shift, jerry-rigged solutions to OCD behavior.  But, it does allow us to stay at the beach for more than an hour, which wouldn’t be too fair to his brother and sister if we had to leave early. ocd-pacific-cbt

and the winner and still champion is:  Genetics!

 

https://www.nytimes.com/2017/07/12/health/autism-faces-genes-brain-development.html?_r=0

The crux of the matter: what if the current mainstream assumption that people with severe autism have matching severe intellectual disabilities is our own decade’s big, bad wrongness about autism? What if Naoki’s conviction that we are mistaking communicative non-functionality for mental non-functionality is on the money?

“Fall Down 7 Times Get Up 8: a Young Man’s Voice from the Silence of Autism” by Naoki Higashida, introduced by David Mitchell and translated by Mitchell and K A Yoshida, is published by Sceptre https://www.amazon.com/Fall-Down-Times-Get-Up/dp/0812997395

Naoki Higashida, pictured aged 22, spells out words on his alphabet grid. Photo: Getty

Naoki Higashida, pictured aged 22, spells out words on his alphabet grid. Photo: Getty

The boys enjoy bath time.  In fact, it is a respite for all parties concerned, especially their parents.  And so, for years and years, it’s been bath time.  Over the past few years, we no longer fill the tub, we just let the water run as it becomes a comfortable stim for the boys.  Susan and I wash their hair for them, literally using a plastic cup to rinse the shampoo out of their hair.  We then ask the boys to use a washcloth as best they can.  That has kept them reasonably clean.

Shower

But this is the summer of showering!  To start, I replaced the old shower head in their bathroom with an extended arm and a gentle rain shower head.  To be fair, the old shower head was pretty crappy and only sent out a single jet of water.  This should be far less intimidating for the boys.

Of course, they now have to relearn their new routine and become much more self sufficient.  Hell, I don’t care how long they stay in there as long as they clean up and wash their hair.

They’re only about a decade delayed in being able to shower on their own, but raising autistic kids has nothing to do with staying on “normally developing” kids’ schedules.  It’s when its right for them and another step towards being self sufficient.

This article was just published in Scientific American.  It points to the great progress that scientists have made in mapping the genes that lead to autism.

It also points to the fact that the more we know, the more we don’t know.

At some point in the not too distant future, it may be possible for kids to hbig dataave a genetic correction to mitigate the affects of autism.  Probably not for another 20 years, but progress is being made.

https://www.scientificamerican.com/article/using-big-data-to-hack-autism/

“If we ever saw a self-correcting defect in two mutations in autism,” Wigler says, “I would stand up and cheer.”

on the eve of Father’s Day in the US, here’s a tip from the dad of an autistic child across the pond in England:

beach

When you have a child on the spectrum, you get used to disapproving looks from strangers. But if people learned to be kinder and more understanding, it would benefit everyone.

ne of the most difficult things about autism is the judgment of other people. That has been my experience of having a son on the spectrum. Throughout his life, from trips to the park as a toddler to restaurant visits now as an 11-year-old, it has been the reactions of strangers that have really hurt. Sometimes Zac finds social situations very difficult. If things are noisy, if there is something he wants that he can’t have, he finds it tough to process those emotions. He may cry, he may become angry, he may have what is commonly termed “a complete meltdown”. As parents, my wife and I have developed ways to foresee and manage these situations, but if we are in a public place, or if my son is with other adults, everything becomes far more fraught and complicated. You get used to the disapproving looks. You get used to being judged.

https://www.theguardian.com/lifeandstyle/2017/jun/16/how-to-help-people-with-autism-just-be-nice

Apologies to The Lord of the Rings, but I’ve been looking for a good app to help Michael identify family & friends.  Then I would love if the app could help him practice basic communication skills.  For example, I could record family members doing basic opening communication (“Hi Michael, how are you today? ) and it could continue where Michael would have to come up with the appropriate response to responses such as “I am feeling sad today.”

I think this could be a great way for Michael to practice his communication skills in a safe/non threatening session.

If anyone knows of an app that can do what I’m looking for, please share.

Thank you! apps-blog-banner

 

 

Time for a feel good post.  And one great truth about raising a child (or two) with autism is that you’re not alone.  The support you will receive from other parents, your family, the local community will help tremendously.

This article from Today is a reminder of that truth:

Things I wish I’d known about having a child with autism

http://www.today.com/series/things-i-wish-i-knew/things-i-wish-i-d-known-about-having-child-autism-t110323

sarah and micah