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."

Stop smothering me! I'm autistic, not cold...

"I need my space!!!"

This is a common phrase in my house.  The Redhead is not afraid of claiming her independence and banning you from her room.  She is constantly watched, manipulated, maneuvered and redirected.  

She's sick of it.

There is only so much a little girl can take before she tells you where to go and how quickly you need to get there.  With or without a handbasket.

And I love her for it.  It's part of what we've been working towards.  G'head, little one, give me the boot.  I accept your dismissal of me in favor of your confident and comfortable alone time.  Just remember that I am always here if you need me or if you want to play, talk or just 'be'.  I'm here and I love you.

So, where this gets tricky is in school.  She wants, so badly, to fit in with the other kids.  To be 'just another student'.  She recognizes her differences and doesn't want to be a "misfit" anymore.  Her words, not mine.  She watched the old version of Rudolf the Red-Nosed Reindeer and latched onto the "Why am I such a misfit" song.  Heartbreaking.

That said, she still requires one-on-one supervision to avoid wandering and meltdowns.  Her current aide, we'll call her Mrs. Smith, is phenominal.  She really understands my daughter and has both the skills and the temperament to hang with her.

Mrs. Smith is also the Redhead's Arch-Enemy.

On the way to school this morning, I asked my daughter "what's your favorite thing about school?".  Thinking she would say 'music' or 'art', she said, without losing a beat, "giving Mrs. Smith some space!"

"Giving Mrs. Smith some space."  An interesting choice of words.  Not "Mrs. Smith giving me some space."  

She looks at her nemesis as needing her, rather than the other way around.  

In fact, when she arrives at school, she will often groan when she sees Mrs. Smith and say "Oh no, not Mrs Smith!" and try to run away.  

So, we have adjusted our approach.  Mrs. Smith hides at the beginning of school and lets my daughter walk to class alone, all the while watching from afar.   She waits outside the door and peeks through the window to see if she needs help.  When certain challenging subjects or situations come up, Mrs. Smith will quietly come into the room and smoothly assist as if she's always been there.

Giving space where space is needed.  Allowing the little bird to spread her wings, but cushioning her landing if she starts to falter or fall.

The Redhead is still a long way off from being considered 'typical', but she is a lot closer today than yesterday, this week than last week, and so on.  Her strength, independence and understanding of worth is truly inspiring. 

It's also drawn in the other kids in the class.  She has friends now.  Not full 'playdate' friends, but friends nonetheless.  She is greeted when she arrives and missed when she's gone.  She can no longer consider herself a "misfit".

Not that she ever was...

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."

Girl Scouts...

Girl Scouts,

I wanted to send some love and express my heartfelt gratitude to the Girl Scouts of my hometown. 

On Saturday, I went to the grocery store with my daughter. As we approached the front door, I heard her laugh and followed her smiling eyes to a group of girls wearing cookie costumes. She grabbed my hand and pulled me towards the group, drawn in by their enthusiasm and positive energy. The girls immediately smiled and cheered as we neared and invited us to purchase some cookies. Having just bought 5 boxes from my neighbor’s daughter, we didn't have a need for more, but my daughter's and the girl’s excitement was infectious so we went over to the table anyway.

One of the parents asked if my daughter was interested in being a Girl Scout, while the girls surrounded my daughter remarking on her red hair.

“Do you want to be a Girl Scout, honey?” I asked her.

“Mmhmm” she replied, clapping happily at the idea.

I walked around the table to exchange information, keeping my eyes on my daughter as we were still close to the street.

“We just moved to the area and are really looking for ways for her to find new friends, grow her self-confidence, and become involved in the community. The fact that she’s so excited by the girls tells me everything I need to know. She’s incredibly insightful when it comes to people and loves being around those that are genuine, honest, and fun. She also has autism.” I said.

Over the years, I have found myself involuntarily watching people’s expressions and body language when I tell them about her. I suppose the Papa Bear in me wants to protect her from the world. I looked in this parent’s eyes and saw only acceptance, understanding and care. The complete lack of judgment was so uplifting and rare.

She looked at my daughter, who was now recruiting cookie lovers with the girls, and said “She’ll be great. Let me take down your information and get you started.”

I wrote down my contact info and looked up at my beautiful daughter. A teary laugh burst out of my chest. The girls had put her in one of the cookie outfits. The joy in her eyes, the acceptance from those around her, the love she felt was overwhelming.

As we were driving home, I called my wife to tell her the story. There was a smile on my face and tears in my eyes, while my incredible little redhead sang ‘Girl-Scout-Coo-Kies’ in the back seat. My wife cheered her on and I made her a promise that I would be the best, and most embarrassing, Scout Dad possible.

Thank you again for this moment of joy. You have provided a measure of hope and grace that we didn't expect but gratefully accept.