The Christmas Gift...

Like many autistic children, my daughter is a wanderer.  She also doesn't have very good danger sense.  A flower, a balloon, an interesting tree might take her across a busy highway or down a ditch.  We are always on constant alert to keep her safe.

As such, she requires a 1-on-1 Para-Professional working with her when she's in school.  

Her current Para is truly remarkable.  She believes in my daughter and has that solid, yet kind, energy that my little girl really responds to.  In fact, over the past year that they have been together, my daughter has grown more confident, more secure and is definitely happier in school.  

Although I attribute much of my daughter's newly-found confidence to her indominable spirit, I also feel that the staff at the school, specifically her Para and SE Director, have contributed so much and with little fan-fare.  

I decided I would give her Para a gift.

Of course, we gave her a gift card, Barnes and Noble, but I wanted to do more.  Para-Professionals are the unsung heroes of our world and often go unnoticed and unappreciated.  Specifically by the other kids in the school who don't totally understand why she's in the classroom, other than that she's there for my daughter.

So, I wrote a story.

I wrote about a magical creature, in the Suessical style, who smells like cookies and cares for the lost.  Who wanders the land looking for those in need and finds ways to help.  The creature's name was the last name of my daughter's Para-Professional...

I read the story in my daughter's class yesterday morning.  Her Para didn't know I would be there or how famous she would soon become to the kids.  

I prefaced the story with the following:

"This story is a gift.  Not one that I would give, but one that was given to me and my family.  And we are so thankful that she is in our lives..."

The Redhead chimed in "It's a tribute to you!!!" and she pointed at her Para.  So much for the surprise...hehe.

As the words spilled out and the class leaned in, I glanced over to her to see if she approved.  I saw smiles and tears.  Happy tears.   Whew...

I read, and stood, and gestured, and whispered.  The kids all listened, occasionally glancing across the room at my teary inspiration, and never once interrupted.  They loved it.  I breathed another sigh of relief...could have gone completely wrong if they hated it or, worse, were bored.  They even applauded at the end, but they were looking at the Para and not me.  I applauded her, too.

She walked over and gave me a hug.

"Thank you" she said.

"No, thank you." I replied.  "Thank you so very much".

Other parents...

So, I was in line with my kids to see Santa the other day.  

In years past, my son would cry whenever placed on the Big Guy's lap, which would then cause my daughter to giggle uncontrollably.  Keep in mind, my son is NT and my daughter is autistic, so this was an unexpected outcome.  This happened 3 years in a row and we always got the shot...one side bawling and the other grinning.

This year, my son had mentally prepared himself for the indecency of a costume-wearing stranger's lap and was determined to gut through it.  He was a warrior ready for the challenge.

That was at the beginning of the line.  

The 2 1/2 hour line...

We started off fine.  My daughter fidgeting because she could see Santa and my son already showing signs of wear in his armor.

"Daddy," he whispered. "He looks like he might be the real Santa."  His eyes widening a little.

"I think you're right, buddy."  I said, kneeling down next to him.  "You ready to tell him what you're hoping for for Christmas?"

He nods. His eyes never leaving Jolly St. Nick. "Ummm...Minecraft Legos and Skylander Trap Team."  

"Ok, buddy.  Well, since he's so close, make sure you're good in line waiting for him, OK?"

"OK, Daddy."

2 1/2 hours...

Now, since this is an autism-centric page, I need to mention that my daughter was absolutely AWESOME the entire time.  Sure, she fidgeted and drifted ahead a bit at times, but she was focused, calm, patient and actively listening.  Even when she saw that they had 'snow' falling from the ceiling, she avoided the fake dandruff when asked only once.  

So proud.

Similarly, my son, although stressing about the visit, did great.  We had the foresight to bring the iPads and, at one point, he had a group of kids surrounding him while he played.  He let them take a turn and was friendly, patient, and giving.  He was serious about beinng on Santa's Good List.

It was all of the other children that amazed me.  

Kids were running freely, grabbing toys from other children, licking the TVs (yes, you read that right), hitting each other, wandering about the mall, screaming at everyone, grabbing, pulling, whining and tugging.  

Having been an autism parent for a while, I am extremely understanding of behavior situations and challenges.  I will often offer my assistance to those in need and am supremely non-judgmental.  I try not to throw stones...

That said, this was ridiculous.

At one point, when we got near the picture-taking area, two children ran ahead and got in the way of other people's pictures.  They had to re-shoot twice because of this.  The parents saw what was happening and went right back to their conversation.

My wife had a little girl come up to her and start playing with my daughter's iPad, which was on my wife's purse.  The girl couldn't have been more than 4 and her parents were 20 people back in line with no visibility.  They didn't even bother to check.  The girl was there for over 10 minutes.

One of the boys that was watching my son play on his iPad wanted to play Rock-Paper-Scissors. So, the boys got up and started playing.  This kid thought that being Rock meant that you get to aggressively hit the hands of those with Scissors.  After a couple of "Take it easy, boys." with no result, I told my son that he was done with the game.  The other boy said to me "Hey man, why don't you just let him play, huh?"  To which I replied "Well, I'm his Daddy and you don't get to make that decision.  I do. Understand?"

The parent was right there and did nothing.

Maybe because I raised a child with challenges or because I believe in awareness and responsibility of my own actions that I am more active in the raising of my children than most people I encounter.  But, these 'parents' provided a horrible example to their children.  I was angry, frustrated, and incredibly saddened by both their actions and inaction.

I can't understand this 'style'.  I worry for their child's future.  I worry even more that my child will have to deal with children like these again someday.  Children who don't know better...because their parents failed them.

 

Let's exercise, Daddy!

The Redhead just grabbed the Wii Fit Plus disk and said "Let's exercise, Daddy!"

She's not inherently athletic and, quite frankly, overweight.  Her limited diet doesn't lend itself to fitness despite our best efforts and she often chooses electronics over physical activity.  So, this was a pleasant surprise.

She patiently setup a Wii Fit account and profile, configured her metrics and clicked through all of the many intro screens.

Smiling and happy, she stepped up on the board and went through Yoga, Basic Step, Free Step and Boxing.  She never faltered, even when she was clearly tired, and even started chanting "You. Can. Do. This." with each step while trying to hit 800 steps in 10 minutes.  That was the stated goal.

She made it to 902 instead.  ...and the crowd went wild...

I'm just so very proud of her drive, her will, and her constantly positive spirit.  She never ceases to inspire me...

10 things to say to the 'Reluctant Parent' of an autistic child...

If you've ever heard the phrase "I didn't sign up for this..." or "my child isn't autistic", then you might know the 'Reluctant Parent' of an autistic child.  Frustrated, surly, and in denial, this person has yet to embrace the fact that autism is a real thing.

In no specific order, here is an incomplete list of things you can say to the 'Reluctant Parent' that might just make a difference:

1.  "Like it or not, you are the parent of a child.  This means that you are responsible for their safety, security, and over all well-being regardless of whether they are autistic or have any other challenge.  Denying your child your support because it is "difficult" or "not what you signed up for" is far more childish than any of the actions of your child.  Grow up, take responsibility, stop whining and start helping."

2.  "Autism can not be 'cured' with discipline.  Your child isn't out of control or being a brat.  Your child is overwhelmed, frustrated, insecure, or even scared.  Yelling at them or 'disciplining' them will only make it worse.  

Imagine, at your most frustrated moment, someone yelling in your face telling you that you're being a jerk...or hitting you...do you think that would make things better or worse?"

3.  "Getting a diagnosis of Autism isn't the end of the world.  In fact, it opens doors to services that might just help your child.  These services can include behavioral, physical and occupational therapy, additional support at school, and added attention to ensuring that your child hits anticipated developmental milestones.  

Please help me understand how this added support, regardless of diagnosis, is detrimental to your child?"

4.  "Autism is not contagious.  No, seriously, it's not.  Stop backing away as if you're going to catch something."

5.  "Your child can hear you.  Everything gets in.  Even if there is no indication of comprehension, every condescending remark, disparaging word, and backhanded comment is recorded and understood.   

Listening and responding are mutually exclusive concepts in an autism world.  The fact that your child didn't react, doesn't mean they didn't hear you."

6.  "You need to be more compelling than their world from them to want to join yours.  Sitting around, watching the game, going out to the bar, or hanging out with your friends is not going to make your child want to be 'present' in your world. 

Imagine being constantly surrounded by televisions, each on a different station.  All of them playing something you enjoy.  One of them is the real world.  Which would you choose? 

Try.  Make an effort.  If it doesn't work, try again or try something new, but don't stop trying.  Give your child a reason to want to choose you."

7.  "Be consistent.  Like any child, your child needs structure and a belief that certain actions will produce certain results.  Irregular behavior and volitile change will generally cause confusion, fear, and frustration.  This can often lead to meltdown or, as you might called it a 'tantrum' (we'll get to that).  

Before you judge the behavior of your child, examine whether there was a lack of structure and find ways to remedy this.  You may soon realize that the 'tantrums' decrease."

8.  "There is a HUGE difference between a tantrum and a meltdown.  Accept this.  

A tantrum is where a child is actively and knowingly crying/yelling/screaming to produce a desired result.  It is often manipulative and easily diverted by a cookie.  

A meltdown is usually associated with a sense of being overwhelmed, frustrated, or afraid.  Typically there is a trigger or reason for the excalated behavior which might not be initially apparent including loud sounds, chaotic environments, or abrupt change in schedule.  Meltdowns are not easily de-escalated and usually require some effort to discover the trigger to avoid it in the future.  Yup, I said 'effort'..."

9.  "Discard your ego.  Throw it away.  It's a poisonous, unhelpful barrier to your relationships and needs to be destroyed.

One of the first things we do as parents, even before our child is born, is to layer our egocentric preconceptions onto our child.  "MY child is going to be a Doctor/Athlete/Musician..."  

It's bullshit, completely unrealistic, and unfair.  

Your child is your child.  Plain and simple.  Layering on your preconceived ideas of who they should or could be prevents you from accepting them as they are.  It also indicates that you think your ego is more important than their own identity.     

Accept your child and embrace the person they present to you, not the imaginary person you created in your mind."

10.  "Your child wants to be loved, respected, appreciated, and valued.  As the parent, you are supposed to provide that.  You are supposed to be their champion against danger, their umbrella against the storm, and their safe place when it gets dark.  

You are also their example of what a parent is.  You represent their future ideals.  Your child looks to you to understand love, respect, and worth.  You are their first and most impactful mirror.

You get to choose what they see.  Be a worthy example."