Living with Autism

(rough draft blog - will be going back & editing this)

 Our society loves labels, and compartmentalizing. It makes us feel safe and comfortable to have someone explained to us in 5 words or less.

If I had to label my kids I'd tell you that my older son Patrick (Pats) is funny, kind, smart, curious & wise beyond his 8 1/2 years.

My younger guy Brian is 7 & a bit harder to describe than his brother. Certainly he's got lots of his brothers traits, he too is funny, smart, curious & more often than not kind but he's way more complex than his brother.

When Bri was 2 1/2 he was diagnosed as being a distinguished member of the club known as

"Kids on the Autism Spectrum."

Since that's a mouthful we've shortened it & just call them

"Special Needs Kids"

When he was first diagnosed I never felt sorrow or anger. I felt relief. I KNEW there was something going on with my little guy & it finally had a name.

I didn't tell people at first. Of course I told my family but when we met people in the park, or folks we hadn't seen in a while, I kept his diagnosis to myself.

I didn't want him to be labeled or compartmentalized. I didn't want him to be put in that box & have people see him nothing more than a Special Needs Kid.

I didn't want people to pity either he or I. I wanted them to see him for all the amazing super cool qualities he had, not only what he was lacking.

Then we planned our first Disney trip where he had to sit in his own seat & not on my lap & the second I tried to strap him in his seat he exploded.

I cannot even describe the tantrum to you. It was like...what? A grenade going off? A bag of super pissed off hornets? A "Housewives of New Jersey" reunion?

He thrashed & howled and railed against that seat belt as though it was on fire. We actually delayed the plane being pushed from the gate because I couldn't get him to stay in his seat.

I truly thought we were going to get kicked off the plane. When we landed I made a beeline to the  bathroom in the airport & cried.

I cried because I knew people didn't get what they were seeing. I cried not because they were judging me, but because they all had the wrong label on my kid. Their label said "spoiled little brat" when that wasn't at all what he was. He was a little guy who was still struggling with speech, had sensory issues & the only way he knew to get his point across, to let me know how he was feeling was to tantrum.

I realized that I needed to take a deep breath, put on my big girl panties & start sharing his diagnosis with people so they could better understand what they were seeing & hopefully with that understanding, they would be kind & patient with us.

I hopped on the internet to see what other spectrum parents did in situations where the potential for big melt downs or inappropriate behavior loomed large.

Not much out there. Lots of parents lending sympathetic ears but not much in the way of advice & in fact, more often than not what I saw was parents discussing the confrontations & fights they would get into with other parents or the general public who made snide, unwanted remarks or unfairly judged the situation without all the facts.

I decided I was not going to go that route. By nature I have a huge mouth, sarcastic wit & I'm quick to defend but I'm never one to look for confrontation. I will always do what I can to diffuse a situation before I go to battle. (of course, if you bring a war to me, you need to fear the consequences because I have a very very vicious streak in me and will show no mercy to those that mess with my offspring)

I looked to  a favorite Lyndon Johnson quote & made it the backbone for how we dealt with ignorance.

"If we are to live together in peace, we must come to know each other better."

Lion & I were going to be Autism Ambassadors & we were going to be as loud & proud about it as we could.

The trouble with Autism & the Spectrum Disorders is that it very often does mimic the behavior of a spoiled brat.  So often Brian's tantrums look like nothing more than a child having a really really intense temper tantrum. ( Other Spectrum parents can tell the difference at 50 paces because once you know what one looks like, you know how different it is than other tantrums)

We were on a Disney trip, & Pats & my husband wanted to go on Splash Mountain. Brian was too little to go & so we sat on a bench to wait. As we wanted Brian got more and more agitated till we were in a full blown no holds barred melt down. Hitting, kicking, scratching, biting, trying to run away, screaming, crying. 

I have always taken a zen approach to his tantrums, realizing that my only role is to keep him safe from himself & from others (and these days keep others safe from him!) but that I cannot not reason with him, cannot not bribe him, cannot not soothe him, & cannot redirect him. I must wait the storm out.

I also tend to zone other people out during these tantrums. My focus is only on him & blocking punches, deflecting kicks, keeping chairs & other objects out of his reach & I don't care how it looks to you or your grandmother that I have my kid in an arm lock or that I'm physically restraining him. Trust me, you do NOT want me to let him go.

So I'm sitting on a bench, at the happiest place on earth, attempting to contain a hurricane & I glance up to see we've gathered a crowd. People staring plus undercover Disney Security.

I managed a weary smile and said in a loud voice

"This is Autism folks"

First time I ever told a stranger what they were seeing, and I remember feeling really proud of myself.

I quickly realized that I couldn't chase after him like a crazy mom

"Hi, sorry, did he bite your son? He's on the Autism Spectrum"

"Hey, how you doin? He hit your daughter with a toy truck? Sorry, he's on the Autism Spectrum"

"Did he throw sand at your child? A million apologies, he's on the Autism Spectrum"

EXHAUSTING.

I decided that not every single infraction needed to be explained away. I would assess the situation & if it was less than dramatic, an apology alone would do.

After all there was still the part of me that wanted folks to see Bri for the amazing kid he was & not just "that special needs kid"

Bri does not have "classic Autism" he's been diagnosed as PDD-NOS.

 PDD-NOS stands for Pervasive Developmental Disorder-Not Otherwise Specified. Psychologists and psychiatrists sometimes use the term “pervasive developmental disorders” and “autism spectrum disorders” (ASD) interchangeably. As such, PDD-NOS became the diagnosis applied to children or adults who are on the autism spectrum but do not fully meet the criteria for another ASD such as autistic disorder (sometimes called “classic” autism) or Asperger Syndrome.

The two main characteristics of the disorder are difficulties with social interaction skills and communication.

Brian struggles with both on a grand scale.

My friend Sarah gave him the nickname "The Raptor" because he appears cute & harmless but attacks with startling viciousness & no remorse.

I have always refused to put my kids in a bubble & put Brian in as many "typical" social situations as I can.

The world is going to have to learn to get along with him, & he's going to have to learn to get along with the world.

After school each day weather permitting, we hit the playground.

Every day at least one, but usually more than one child comes to me to tell me Brian has hit, spit at, kicked, slapped, smacked or otherwise insulted a fellow playground goer & he has broken the unwritten playground code of conduct.

I always make Bri apoligize & I apologize. At this point, most parents know Bri is special needs so no explanation is necessary.

Once in a while however, we venture to a playground that is not at school, a general park playground & true to form, Bri will at some point insult or hurt some fellow kid.

As I mentioned before, the infraction will determine how I handle the situation.

My boys are really protective of each other but the difference between them is that my older guy is not a scrapper. He would rather get in your grill & tell you to back up & make a few mock charges before he throws down. He won't let you mess with his little brother but he's going to warn you & come to me to tell me what's going on before he gets violent.

If Brian feels that anyone has disrespected or insulted his big brother in any way at all, he's going to kick some ass. He's strong, fast & fearless. If you piss him off, you are going to leave that battle bruised & worse for wear.

True to his nickname "The Raptor" you won't see it coming & if you don't know him, you don't know that side of him.

I however, know him, & his triggers & feel it's my job to try to stay one step ahead of him to attempt to keep the playground from turning into a "Sharks" vs "Jets" kind of an atmosphere. I try to keep the street rumbles to a minimum.

I refuse to helicopter parent. I will not follow him around but always have an eye on him & I'm very tuned into the kids he's playing with & how Bri will react to the type of play they are engaged in.

I'm always on the edge of the bench ready to spring into action.

Much of the time I can anticipate how he will react & can redirect or diffuse before it escalates. Recently a kid kicked my older son. I saw it coming & was able to get between Bri & the other kid before a brawl started. I dragged Bri away as he was screaming

"You JERK!! YOU BULLY! NO ONE kicks my brother!"

I was able to redirect him to the swings & he got happy & forgot about that other kid.

Often though, I'll redirect but he won't forget. He will spend the whole time with the new activity plotting the other kids untimely demise & the second I let him go back to free play he will make a B line for that kid and blind sight him.

When this happens, I go into damage control mode. I immediately make Bri apologize to the child, & then I apologize to the child & explain that Brian is on the Autism Spectrum & his social skills aren't quite what they should be. I explain that the brothers are really protective of each other & if Bri thinks his big brother is being hurt or disrespected in any way, even in the course of innocent play he's going to come after you, claws & paws.

I ask them to please be patient & to come and tell me if he misbehaves. 

I have found, that more often than not, this works for us.  When you understand what you are up against, or what you are dealing with, it makes it easier to understand & deal with.

I have seen kids go from aggressive play tone it down & play in a much kinder fashion after I tell them about Bri.

Girls especially. Girls love to be put in charge & mother Bri.

Playgrounds are public spaces & I want everyone to just get along & be happy.  My kids have as much of a right to be there as yours do but they do not have the right to run roughshod over yours & I will NEVER use his diagnosis as an excuse. It will only be an explanation.

 This year was an especially difficult one for Bri & if you go back in this blog you can read all about it.

Brian's temper at this point is legendary. It takes almost zero to piss him off & he will go from darling happy child to wrecking havoc like Carrie at the Prom.

When he gets angry, he wants to make everyone around him as miserable & unhappy & will attack & strike out at everyone around him.

The last great blow up we had, thankfully I was there for & it involved him picking up a very heavy text book and throwing it at a classmate, and then picking it up again and throwing it at her again.

That one made me nauseous. I actually went & got a little gift for that poor girl & Brian picked out an "I'm sorry" card & we signed it and found her on the playground the next day & gave it to her along with a hug, and an apology from me.

Will he ever outgrow this? Will I ever get to stop explaining & apologizing? I have no idea.

We try to take it one day at a time & never lose our sense of humor around here.