A Dad's Journey

Father of Autistic Twins Speaks Out

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

Nice to see Sesame Street acknowledge kids with autism with the arrival of “Julia”.   This will allow the newest of generations to get better acquainted with kids on the spectrum and what to expect.  It’s a nice development.  It might even make Elmo more palatable.  🙂

https://www.nytimes.com/2017/04/07/well/family/what-a-muppet-with-autism-means-to-my-family.html

Julia

When I read this article, I could relate in every way possible.  It’s not every family that have identical twin boys in their late teens.  And the difference in personalities between Nathan and Curtis mirrors the differences between Michael and Sean (Nathan=Michael, Curtis=Sean).

It’s a great read, especially on the cusp of Autism Awareness Day.  Enjoy:  “Out And About With Autism”

The Bickerstaff Family

The Bickerstaff Family

 

https://www.theguardian.com/tmi/2017/mar/31/out-and-about-with-autism-if-a-baby-starts-crying-we-have-to-leave

 

Article just published in Scientific American.  After you read it, you’ll still be asking what are those real reasons again, as the author seems to sidestep any hard conclusions.

The Real Reasons Autism Rates Are Up in the U.S.

A hard look at whether the rise comes from more awareness, better diagnosis—or something else

The most nagging fear for any autistic parent is what happens to your kids when you’re gone (or at least no longer able to care for them).   The shortage of adult housing has been well documented.  The nation’s appetite for taking care of the less fortunate is probably at an all time low.

I’m writing this as a wake up call to myself.  Over the next five years, I need to develop a plan, a realistic plan to take the boys through adulthood.  That starts with housing, but includes vocational work, a sense of purpose, as happy a life as they can possible have.

 

All I need now is a plan. housing

Basketball

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Probably no other sport interests my 16 year old twin boys than basketball.

Soccer, no interest.

Baseball, OK they like to hit, but play the outfield?  They’d rather watch grass grow.

Football, they do OK, but it’s a complex game.

Basketball, on the other hand, seems to speak to them.  Put the damn ball through the net.  Yeah, we can do that.  basketball

Now, both Michael and Sean are playing basketball at school Monday & Wednesday.  They also play at a Challenger Youth Program on Saturday Mornings.  And we have a family shoot around on Sunday Mornings.

If only dad could still remember how to put the damn ball through the hoop.

 

The curious connection between autism and cancer

A surprising number of genes associated with autism also have links to cancer. Does that mean cancer drugs can treat autism?

https://spectrumnews.org/features/deep-dive/the-curious-connection-between-autism-and-cancer/

pathways_spot-2__revision_2

Here’s a link to a YouTube clip of my son Sean listening to “Fix You” by Coldplay.  Ironicallycoldplay2, the same band and same song were featured in a viral video (this one ain’t going viral) because the dad got so emotional hearing the song in concert with his son seated next to him.

In this case, it’s just watching Sean’s reaction as the song just swirls around him and he happily finds himself enveloped.

It’s pretty cool, trust me on that one:  https://www.youtube.com/watch?v=ioJE5Gdy5PQ&feature=em-upload_owner

 

exhausted-dad-at-computerHalloween has come and gone.  Tomorrow we’ll finally have an end to this election madness.  But a constant remains in my household; the nighttime antics of my 16 year old identical twin boys.

I have tried my level best to create a routine.  Setting up exact shower schedules, final meals, TV shut off times and off to bed regiments.  The problem is that being sent to bed doewsn’t mean going to sleep.

I have Michael who sounds like a happy banshee.  He whistles, hums, makes all the oddest sounds, bounces on his bed and basically keeps up a racket until midnight.  And yet, he is the least of my problems.

His twin, Sean doesn’t feel as compelled to stay in his room.  Like something out of “The Great Escape”, he waits and plans his escape. Sometimes it’s just to the bathroom, mostly it’s downstairs for a midnight snack, perhaps some bubble blowing (He has a MacGyver-like ability to mix solutions into producing bubbles and then Jerry-rig any household tool into his bubble wand).   Of course, he also unlocks the front door, lets the dog out to wander the neighborhood and essentially cause endless mischief until roughly 1am.

This leaves dad (keeper of the night shift) in a state of high alert until the wee hours.  I maintain an absurd hope that they will grow out of this, but it’s gotten worse as they’ve hit their teen years.

I welcome and and all suggestions.

Signed,

Exhausted dad