Tuesday, June 27, 2017

Autism and Wandering

Good afternoon.  

I wanted to address a very important topic today.  Nearly half of families with autistic children report that their child have wandered or "escaped" from a safe environment.  This obviously places our autistic children at an increased risk for accident, injury, and foul play.

I remember a few occasions in which Tyler somehow got out of sight and it was perhaps some of the most frightening moments of my life.

One very minor incident was at a picnic at my parents house.  Tyler was not very old and he somehow got in a position where everyone else thought someone else had him.  You know...that..."where is Tyler?  I thought YOU had him".  What made it scary is that my parent's property has a dirt road on one side and a large creek on the other.  I immediately sprinted for the creek looking for ripples as I ran.  I barely reached the bank when I heard everyone shouting that they found him.  He hadn't gone very far and didn't seem fazed that he had slipped about 20 feet from view.  My heart, however, had stopped beating.

Another time was a lazy weekend morning.  My wife and I were sleeping in a bit, and Tyler was awake but not doing anything in particular (or so we thought).  Our phone rang and it was our next door neighbor George.  He asked if we knew Tyler was out walking around in the back yard.  I said we did (which was a lie...we didn't), and sprang up to see where he really was.  Sure enough, he had opened the back screen door, and walked out into the back yard, fashionably clad in white socks, a diaper, and sunglasses.  It seemed he wasn't intent on really going anywhere, he was just taking in the sunshine.  

Yet another instance came when we had a summer caregiver.  This agency strictly forbade the transporting of Tyler unless we gave our consent, which in this case we had not.  One day the agency came to do a surprise check on the caregiver, and she was gone.  So was Tyler.  We searched the closest park thinking they may have driven there instead of walking. No Tyler.  They tried calling her but she did not pick up.  I freaked.  She returned about 30 minutes later, and Tyler appeared to be fine.  They would not let her on my property for fear that I might retaliate and make matters worse.  She refused to admit where they had gone, and she was fired.  I checked Tyler's physical condition and his overall demeanor and it was pretty obvious that he had suffered no distress of any kind.  

Pretty scary right?  We consider ourselves to be very loving and protective parents, yet things were still able to happen.  And in each case, Tyler wasn't even intending to leave the safety of our watchful eye.  Imagine if he had more of a tendency to try and get away!

There are some very important things to remember when we are protecting special needs children or adults from wandering or escaping.  First, what attracts them to leaving their safe environment?  This could include:

  • Attraction to bright lights, traffic lights, signs, or brightly colored items
  • Moving items such as fire trucks, buses, trains, construction equipment, etc
  • Attraction to water, which is very common
  • A desire to "escape" from being overwhelmed and overstimulated
  • General confusion or memories of some other area from their past
  • An absence of recognizing dangers
There are many ways we can reduce the odds of wandering or not being easily found:
  • Use alarms, bells, buzzers, etc. to signal if an exterior door has been opened
  • Utilize fences and locks which are not easily deactivated
  • Have relationships with neighbors so that they will alert you if your special person is seen outside of the safe environment alone
  • If feasible, have your special person wear a form of ID like a bracelet
  • Register your child with a Child ID program so that their fingerprints and picture are on file
Tyler's safety and security has always been a constant concern.  As he grew and changed, our strategies had to change too.  It has never been easy, and we have certainly never been perfect, but we have always done the very best we could.  

Be well and God bless.   Tom

Friday, June 23, 2017

Radio Gaga

Good afternoon,

Listening to a local radio station a few days ago, I heard something that I objected to.  There was a conversation between a few on-air personalities, and one of them mentioned that they had no issue with confronting a parent in public if she felt that their child was acting inappropriately in public.  Hearing this made my blood turn cold.  (There was a bit more to it but this is the main gist of it).

What this person failed to understand, in my opinion, is that they cannot simply look at a child's behavior and understand the cause.  Is the child perhaps on the Autism spectrum? Is the child being treated for serious issues such as abuse, neglect, or other circumstance? Worse yet, is the child suffering from such issues and not receiving any treatment at all?

As Tyler's Dad, I have felt the stares.  I have seen people whisper and snicker in his direction.  My wife has suffered in silence when Tyler hit at her, or kicked, or pinched.  It can feel as though someone is holding a "BAD PARENT" sign directly over your head.  I doubt that there is any caregiver who hasn't found themselves feeling this way.  Our hearts break because we know our children are not bad.  They don't deserve to be mocked, or stared at like they are less a person than anyone else.  

And they, nor we, deserve to have someone randomly come up to us and offer wisdom for a subject they know nothing about. 

I called the radio station and had a friendly and constructive conversation with the station director.  I explained that my concern was that if an on-air personality is so boastful about passing judgment and reacting inappropriately about children in public, it sends a very poor message to those people that believe tolerance is four letter word.   The station director was extremely understanding and actually agreed that the conversation was in poor taste.  He assured me that the personality meant no disrespect.

On the surface it may seem like an innocent and unimportant thing to tilt at windmills about, but unless we educate people on being tolerant and resisting that urge to pass public judgment, we will forever face this issue.  I'm realist enough to understand that some people cannot be educated because they don't WANT to be.  And some people will always fear what they don't understand.  But I do believe that generally there are more people who are more inclined to be accepting.

Our special needs loved ones deserve understand and respect, even when they are "disruptive".  We must all be educators to help bridge the typical world with their world.

Be well and God bless.    Tom

Sunday, June 18, 2017

Father's Day 2

I believe in being a good dad.  In fact, I believe that it is the most important role I play in my life.  

Studies may very on the degree of effect that a fatherless home has, but most of them agree on very basic points:

  • About 1/3 of children in the US are growing up without a father figure
  • Children without a father figure are significantly more susceptible to incarceration, depression, and suicide
  • Females raised without a father figure are at higher risk for teen pregnancy
  • Some studies suggest that over 3/4 of children with behavior disorders come from homes without a father figure
Make no mistake, this is the massive social problem that nobody is talking about.  And I want to honor single moms, adoptive parents, extended family and female couples who successfully step up and fill that void.  It can be done.  However, there are far too many men who do not own up to their responsibility.

Consider:  A daughter will most likely accept being treated the way their father treats their mother.  In other words, if a man is absent or treats her mother with disrespect, she will accept absence and disrespect from her own relationships.  FATHERS MODEL WHAT MEN ARE LIKE FOR THEIR DAUGHTERS.

We get so concerned with Russia, and Obamacare, and Bill Cosby, and the couple from Flip or Flop, that we fail to recognize the most basic of problems, which is dad's are not generally doing their end of the bargain.  

So when we look, as men, at the world, and we curse and shake our fists, we have to ask ourselves if we have done the most instinctive thing in the world, which is to raise our children with a sense of discipline and honesty.  Are we raising them prepared for the world? Are we there everyday possible to lead by example? 

I fight for my children every day.  I hug my children, tell them that I love them, and model the behavior toward others that I want for them to show.  I am deeply flawed and have no chance to ever be perfect, but I plan to leave my children with no doubt that they are loved, respected, and expected to treat the world with decency.

Let's make Father's Day more than just a time to get a pat on the back and a pretty Hallmark card, and let it be a reminder that we have a tremendous responsibility to be up to the task every day.  Our future depends on it.

Be well and God bless.    Tom

Thursday, June 15, 2017

Father's Day

Good Morning!

First of all...happy Father's Day to all of the dad's out there.  I believe there is NOTHING in this world more important that a man can do to contribute to mankind than being a good husband and father.  Many of the issues that we face today can be traced directly to the lack of a father figure in so many lives.  

My father was raised in a very different age than I was, and certainly different than that of my children.  He was raised to believe that a father was the sole provider and disciplinarian. The mother's "job" was to tend the house and raise the children.  It might be easy today to look down on a stereotypical upbringing like this, but this was just the society he and his parents grew up in.  There were not a lot of expressions of love and affection to go along with this set of beliefs.  It was more an implied thing.  After all....putting food on the table and having a bed to sleep in shows that he cared about you.

I think I can safely say that I am different than my dad in many ways.  He is extremely mechanically inclined.  He has worked on cars and machines and all sorts of stuff.  I'm lucky if I can get a can opener to work right (no...seriously).  When my employees saw me with a tool in my hand, they would make sure somebody had a phone at the ready to call 9-1-1 (no..seriously).  My dad is not what I would consider a social and expressive person.  I teach classes, write blogs, and smile at strangers.  My dad believes that strength is about how you project how strong you are, while I believe strength is how vulnerable you can allow yourself to be.

There are a few things that I am very blessed to have learned from him however.  I learned that being a good father is to be fearlessly devoted.  I've learned that being honest and doing the right thing is what has to be done, even when it's painful.  I've learned that I make the world better when I raise my children to have respect for others.  And I've learned that while I'm on this earth, no matter how I choose to do it, I should be a person that can be relied upon by his family and friends.

If I leave this earth tomorrow, I want people to say that I was a good neighbor, a good friend, a good husband, and most especially a good dad.  I want my children to live on and know that they were loved and cherished in the best way their dad knew how.  And I want for my daughter to someday carry that love and devotion to her own husband and children.

Happy Father's Day to all dad's out there.  And God bless.     Tom

Two Different Kids

We have two very different children.  In fact, they have almost nothing in common.  Tyler is a young man stuck in an aging man's body, and Sam is an 8-year-old body with a 16-year-old sass.  

I'm often asked if I was drinking when I decided I wanted another child after our experiences with Tyler.  No...but I've been drinking ever since!  (I'm kidding of course).  

I'm just one of many special needs parents who juggle non-typical and typical children.  This is a situation that I believe is under-discussed and under-appreciated.  After all, it mixes the challenges of giving intensive, and exhaustive care to the non-typical child, with the normal and no-less-exhaustive challenges of the typical child navigating in the typical world.  

In raising Tyler, we basically took the ideals of normal parenting, opened up the nearest window, and tossed them out. In fact, it was when we stopped trying to think "inside the box" and began to have an open mind every single day, that we started to understand him better. Tyler's thoughts, for the most part, were minute-to-minute, which meant that we just had to try to relax, and take handling him with that in mind. 

Then came Sam.  I think Sam took every typical tendency that Tyler was missing out on, ramped it up to five times the regular level, and ran with it.  She wants a phone, make-up, and probably even has a plot drawn up in her room that outlines how she and a few friends can rule the world.  She was born stubborn, opinionated, and willful. But she also has an amazing presence and charm that comes with all this drama.

Today I want to honor those parents who do the impossible, which is to raise a special needs child in this difficult world, and still have the skill and courage to raise typical children as well.  It's like having a degree in microbiology and deciding "heck....why not study rocket science while I'm at it?!?".  It truly is two different parenting methods.

I said in the opening that they have almost nothing in common.  While this is true, they do share some very important things.  They are both very loving and accepting people.  They are both beautiful inside and out.  They both display tremendous courage every day.  And most of all, I am especially proud to be raising them both.  

Be well and God bless.    Tom  

Sunday, June 4, 2017

RIP John

Good Evening,

With a heavy heart we report that Tyler's Great-Grandfather John has passed away.  We were able to visit with him this morning and show him a lot of love.  We even got a few smirks and giggles when we pretended to needle him a little.  We let the sunshine into the room, gathered around his bed, and showed him every bit of respect and love he earned in his 86 years.  

One thing we made sure John understood was that Tyler was ok.  I let him know that Tyler was right there with him, in his heart, and he always will be.  

I don't have to think too hard to remember John getting down on the floor with Tyler and rolling the car back and forth.  Or when he tried to help Tyler learn to sit up on the couch.  John would always ask Tyler if he was a "funny fella", and Tyler would smile and say "yeah".
There was no question that Tyler was was very important to John, and John was very important to Tyler.  John took his role in Tyler's life very seriously.  Tyler's character has a lot of John in it to be sure.

On the surface, John and I didn't agree on very much.  We were politically on opposite poles.  He was born in a "man's-man" kind of era, where I believe in a bit more political correctness.  Someone who didn't know us might think we didn't get along.  But that was the fun of our relationship...we could argue about outside issues, but we always agreed about what was important.... 

The love of family 
Being a person someone can count on
Not taking life too seriously 
Doing a job correctly
Being firm but fair

                                                                                                  Here is to you John.  May your beer always be cold, your crabs always full, your martinis always dry, and your cards always aces.  We love you.   Your Outlaw Son-In-Law.