A Dad's Journey

Father of Autistic Twins Speaks Out

Browsing Posts in dads and autism

As parents of autistic children, at least we are living in a time and culture where their survival is assured:

 

Pioneering autism doctor Hans Asperger sent disabled children to be killed by Nazis, new study claims memorial

https://www.independent.co.uk/news/science/asperger-nazi-study-latest-proof-hans-autism-research-spiegelgrund-a8311181.html

Hans Asperger, the Austrian paediatrician who gave his name to a kind of high-functioning autism, helped the Nazis in their murder of disabled children, according to a new report.

The new study claims that the respected professor actively recommended children should be sent to their deaths at Spiegelgrund, where the Nazis enacted a policy they referred to as euthanasia that saw hundreds of children killed.

A Philadelphia Story, about a dad and his young autistic son.

Bill Tyrrell was inspired when the Eagles unveiled the Eagles Autism Challenge on September 15.

His 4-year-old son, Will, is on the spectrum and stands to benefit from the money raised by the inaugural cycling and running event happening on May 19. Tyrrell and his wife, Leah, have been able to provide their son with the services he needs but other families aren’t as fortunate.

“We took him for speech therapy at CHOP (Children’s Hospital of Philadelphia). It was costly, but it was important that he gets these extra services. You go all in. You’re going to give your kid everything you can. We try to give him all the resources we can because this is such an impressionable time,” Tyrrell said.

Tyrrell felt the urge to do more to help other children who face the same challenges as his son. He immediately registered and his Team IronWill has raised over $7,000 (as of today) for the Eagles Autism Challenge.  Tyrrell_Family_615_041318http://www.philadelphiaeagles.com/news/article-1/Inside-A-Fathers-Quest-To-Understand-His-Sons-Life-With-Autism-/443c16b0-8eae-43f9-ba2a-bf16c2ec9f1e

Addressing an estimated crowd of 20,000 people gathered in St. Peter’s Square, the pontiff urged them “to take every opportunity to be witnesses to the peace of the risen Lord, especially with regard to the most fragile and disadvantaged.”  “In this regard, I want to assure a special prayer for World Autism Awareness Day, which is celebrated today,” the pope said.

The Vatican on Monday released a message from Cardinal Peter Turkson of Ghana, Prefect of the Dicastery for Integral Human Development, for World Autism Day.

“With its works, the Church shows its attention and solicitude for persons with disturbances of the autistic spectrum,” Turkson said.

 Pope Francis 2“There’s a general attitude of welcome present in our communities, although we still struggle to practice real inclusion, for which it’s fundamental that ‘our Christian communities be houses in which every kind of suffering finds compassion, in which every family with its burden of pain and weariness can feel understood and respected in its dignity’,” he said, quoting a 2016 message from Francis.

“I address a special gaze at the families of persons with disturbances of the autistic spectrum, which merit great admiration for accepting, with love, the difficult burden of a child struck with this disturbance,” Turkson said.

Observing that national and international laws requiring assistance for persons with autism are “rarely put into effect,” Turkson said it’s usually families left to provide the bulk of the care. He called for an alliance among health systems, social service providers, and educators, to guarantee care for “the whole arc of life.”

“Persons struck by these disturbances, daily, are faced not only with difficulties resulting from their condition, but also by the main limits that society itself imposes on them, preventing them from being able to realize their true potential,” Turkson said.

That’s what Newsweek is asking this week. http://www.newsweek.com/2018/02/23/really-good-weed-why-cannabis-may-be-worlds-most-effective-remedy-core-806758.html

On a personal note, we took our son Sean to the neurologist for his three year check up.  Largely, this is a de facto process that the school requires.  As we’re leaving, I asked the doc what he thought of medical marijuana.  You would have thought I asked him about turning my son into a drug dealer.   “Oh my, I’m not aware of anything in that field.  That’s dangerous ground to enter“.

Fast forward two days and what’s the big story from Newsweek?  Yup, right there in the subject of this piece.

The morale of my story is that as a parent, you need to do your own digging/due diligence and decide what’s best for your child.  And not some high priced expert who hasn’t looked at new drug opportunities since the turn of the century.  BTW, there is also research on this subject being conducted by the Children’s Hospital of Philadelphia  http://www.philly.com/philly/business/cannabis/childrens-hospital-to-study-medical-marijuana-and-autism-20171211.html

weed

 

Traveling with your autistic child is always challenging.  Not to mention handling him/her when you get to your destination.  Hopefully, your relatives are rather forgiving.

When we travel (fortunately, not far to my sister’s house), we plan how to best manage Michael & Sean.  Sean will look to spend time outside blowing bubbles.  But it is late fall and the temps will only be in the mid 40’s, so he can’t stay outside forever.  Susan has come up with other activities for Sean so that he can periodically come inside to break up his day, do some useful activities before he resumes bubble blowing.

Michael likes to perch by the island table in the kitchen and just graze all day.  How that kid stays skinny is a testament to his metabolism.  In a similar vein, we need to break up his day a bit and actually make him part of the Thanksgiving occasion.

It’s easy sometimes to just let your autistic child do their thing, while you catch up with family, adult beverages and football (well, it’s awfully easy for me).  But I need to remind myself

Painting by Jack, diagnosed with autism at age 3. Jack is nonverbal and likes to communicate through his artwork

Painting by Jack, diagnosed with autism at age 3. Jack is nonverbal and likes to communicate through his artwork (Autism Speaks)

that being an autistic parent doesn’t come with a free pass for the Holidays.   Still, I’m looking forward to tomorrow.

Wishing all of you the best of the Holidays and hopefully, a wonderful Thanksgiving with your children.

Best regards,

Kevin

 

I think we get used to the 2nd looks from parents of typical kids.  And the simple truth that our kids don’t get invited to many parties.  Here’s a recent story from a dad across the pond who had had enough and used Twitter to express his anger.

https://www.thesun.co.uk/fabulous/4857833/dads-heartbreaking-autistic-son-invite-birthday-parties/  dad's rant

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.

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.

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