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".

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."

Birthday Parties...

How many children's Birthday parties have you skipped?

It's not that you're anti-social, it's just that you know what to expect:

Loud music

Louder kids

Isolation of your child

"Unacceptable" food

The looks from the other parents.

Potential 'exit' meltdowns. Hell, potential 'all the time' meltdowns.

If you've been through this, then you realize that the socialization is usually not worth the stress, for you or your child. I mean, why put anyone through it if it's just going to be a nightmare?

I get it. I totally understand. And yet...

We were invited to a B-Day party this weekend and, although we are new to the neighborhood, my daughter and I decided to go.

The scene: Bouncy House, loud music, screaming kids, flat pizza, chocolate cupcakes. My daughter hates flat pizza and chocolate. This should be interesting.

We walked in and was greeted by the Dad, a 3rd grade teacher with kind eyes. My daughter, totally distracted by the sounds in the bouncy room, didn't notice him at first, but focused hard to put the present in the bin, take off her shoes, and bolt out into the fray. I thanked the Dad and hustled off after her.

She walked into the center of the bouncy room and immediately covered her ears, the sounds a little overwhelming. She squeaked loudly and ran to the closest bouncer, a 'rock climber with a slide'. She took a couple of steps up the wall and slid back down.

"Daddy. I need a help."

"You can do it, Honey. I believe in you!"

She scrunched up her nose at me and tried again, me cheering her on. The Mom saw me and walked over to help cheer. My daughter looked back, halfway up, and smiled her beatific smile. Then she continued on with more confidence, making it all the way to the top. Her 'payoff' slide was on her stomach and followed by an immediate re-climb of the wall.

That's my girl...

I spoke with the Mom for a bit. Her son, the B-Day boy, was also a redhead and very excited to have another ginger in his class. There was no indication of difference, challenges, or autism.

Hmm...

Later, as my daughter was making her 5th trip up the wall, a couple of girls her age ran up to her and asked if she wanted to join them in the Hurricane Booth, a closed, windy room with 78MPH winds. She looked at them, right in the eyes, and said "YEAH!" and ran off with them.

As the hurricane began, I could see my daughter start to get a little anxious. Without missing a beat, one of the girls started rubbing my daughter's back, concern in her eyes. My daughter calmed down and allowed herself to enjoy the wind, her friend acting as her grounding point.

Wow.

The party continued for a while and then moved into the pizza room. The final challenge.

My daughter sat down at the table, the pizza was already on the plate, and immediately said "Yuck! I hate this pizza!" Hehe...so direct.

I had planned for this as we ate right before we left, but weren't allowed outside food (big fine for this...ugh). So I talked to her for a bit about waiting for her friends to finish. She drank her water and sat calmly, listening to the surrounding conversations.

Unreal.

Before we left, several parents had requested that we have playdates as my daughter is loved in her class. They knew she had autism, they just didn't see it as a deterrent, just another facet of her. I left with a list of phone numbers and a spring in my step. My daughter left with a smile.

Later that night, I showed my wife the video of the girl rubbing my daughter's back in the Hurricane Room. We cried for a while and held each other.

"I'm so happy for her..." my wife said through tears. "I'm just so happy for her."