Behavior Really Is Communication

Behavior is Communication.  This was one of the tenets of autism I learned early on.  I remember sitting in a workshop with my then-husband, who really just didn’t get it, and this was the key piece I walked away with – I already knew it, but the workshop had reinforced it, and I had hoped my then-husband would have an a-ha! moment, but it never came.

The ex has now cancelled on The Boy for his week of visitation next month, and I broke it to The Boy late last week.  He had equated this planned trip to his dad’s to the escape plan of the tank fish in Finding Nemo, and would talk about how he was looking forward to seeing whether or not the escape plan would work.

Well it didn’t.

And at first, The Boy seemed OK.  “I guess the escape plan didn’t work.  I guess we’re stuck in the tank,” he would say.  I knew he didn’t really feel like he was stuck here with us, but that the plan fell through.

As the weekend wore on, and we began to witness more teenager-y behavior (refusal to do things we asked, etc.), it took my mom pointing out to me that this behavior was probably coming from the cancellation of plans.  And I had a Doh! moment.  I should know better, because of that basic rule, BEHAVIOR = COMMUNICATION.

Of course, that explains why he was being such a jerkface this weekend!

It’s still a sore subject, but figuring it out has helped The Man and me gain a little perspective, and retain a little more compassion for him right now.  Sometimes it’s hard to be compassionate to someone who is being a jerkface, but The Boy is still just a kid, and a kid who has been cancelled on again by his dad.

“I knew this escape plan wasn’t going to work.  Do you remember me telling you that before?”

:(

 

 

Autism and Arthur

Last Wednesday, I told The Boy that a hurricane was headed our way, and there was a possibility we might leave town for the following night.  Immediately, I regretted my carefully constructed, nonchalant approach – he was scared.  “A hurricane??” I explained that it was really just a bunch of wind and storms headed our way and that the power may go out, so The Man and I were thinking about heading out of town for a night to stay in a hotel which would have wifi and power, so we could be comfortable until the storm passed.  He visibly calmed until I added that we might pick him up from camp instead of Grammy because we might head out of town directly from there.  Change in routine equals added anxiety.  Oops.  “We’ll see,” I said.

We watched the Weather Channel religiously that night, and started to get anxious ourselves.  It began to move quickly, it began to slightly move inland, it began to look like it was going up to a Category 2 by the time it would hit us, and it was expected to make landfall exactly where we live, which would mean loud scary sounds, and a definite power outage if nothing else.  By Thursday morning, we were sincerely leaning toward heading out of town.  I had to head in to work for a few hours, and then we would make the determination.  Grammy would pick The Boy up as usual, giving us time to board up the shed and make preparations at our place.

After I got home from work, The Man and I looked at each other and didn’t need to say a word.  We packed some things, grabbed the important papers, secured the back door, and headed to pick up The Boy.  Most people in our area head west, but they jack up the hotel and gas prices as you head inland, so we head south, because even though it is into the storm, it’s usually less severe down there and you don’t have to give up your first born for some A/C and a bed.

Well Hello, Arthur

Well Hello, Arthur

 

We headed into bands of driving rain and wind, and pulled into a hotel about a hour and a half down the coast.  We ran up the stairs to our room and began to dry off and settle in.  And then the real challenge began.

The wifi was broken, he said.  When the iPad finally found the signal, it was too slow, he said, and he started to get agitated.  “Let me see your iPad, to see if I can fix it,” I said.  He refused.  He began to pace, and head toward the door.  He put the iPad onto the floor, none too carefully, and even stepped on it.  “I am DONE with this iPad.  We need to sell it and get a new one.  This one doesn’t WORK!”  He went to open the hotel room door, and I had to use my body to block him from doing so – none too easy anymore, now that he is 2 inches taller than me.  “We need to leave.  We need to go home,” he whined, over and over.  Reasoning doesn’t work at this stage, I knew, but I tried it anyway.  “There’s no power at home, let alone wifi, Bud.  Let’s decide on something to eat for dinner.” He would not be dissuaded.

Somehow, we finally convinced him to go with us to get some dinner, maybe we promised ice cream.  I don’t really remember.  His mood lifted as he was able to check out the toilets at the Wendy’s around the corner, the only place that seemed open.

We headed back to the room, where the wifi finally seemed to work well enough for his tastes.  We ate, watched TV, and got a good night’s sleep. In the morning, we returned home to find downed branches everywhere, but our house was  intact, and the power eerily came back on just about the same time as we walked into the house.  He was home, there was power and wifi, and he was happy.  The storm was over.

An Open Letter to the Mom in the Doctor’s Office Today

I overheard your friend (daughter? niece?) reading to you from that questionnaire today, and I took notice because of all of your “no” responses. I immediately remembered those soul-crushing, developmental, yes or no questions, the mix of defensiveness and hopelessness when you begin to understand just how far behind your little one is.

“Does your child point to an item s/he wants? Does your child turn pages of a book independently? Does your child say three words?…”

And on, and on, and on. I heard the tone of your voice change the more she asked. I heard you begin to whisper. I glanced at your face to see if you might cry, but you were holding it together. I guessed the tears may come later when you are alone, maybe before you fall asleep tonight.

And I watched your little one. I watched him smile, and observe the other children playing – he was watching close, but something was keeping him from playing along. He looked at me and made eye contact. I waved and smiled. He smiled bigger and looked to you for reassurance, but you didn’t notice.

I wanted to say, “This tall, gangly boy of mine sitting next to you didn’t do any of that stuff either. We had to use flash cards to teach him words. He didn’t point at anything.  They thought he was cognitively impaired because he played with the toys wrong.  But you know what? He is the best speller in his class and uses words like ‘misheard’ and ‘eclectic’ as an almost-seventh grader!”

I really wanted to say, “These questionnaires are a special kind of torture for us, and you are most definitely one of us. You are not alone.  Don’t discourage too quickly.  Be hopeful, because he needs you to be. I have been in exactly that spot where you are sitting and it is awful, but better days are ahead. Believe in that little boy.”

But I didn’t say anything because I’m not sure I would’ve wanted anyone to do that when I was in your place. Maybe I should have. Instead, I hope you get the support you need through this process, and that you realize quickly that he needs you to just do what you gotta do to get him as close as you can to where he needs to be.

And that there are lots of us rooting you on, even if silently from the chair next to you in the doctor’s office.

My little blond boy, once upon a time...

My little blond boy, once upon a time…

This One or This One?

As part of the “Wishing Away the Autism” debate, one of the posts I read argued that we show too much of a positive side of autism to the rest of the world, and that we need to share more of the horror stories, that we, the autism community do ourselves a disservice by showing the nicey-nice stuff because people are less likely to support funding for research and resources if autism “doesn’t look all that bad”…

Well.

Which is clearer?

Sounds like a sales pitch to me.  I guess I just don’t have patience for anything less than the truth, which is why I share the good, the bad, and the ugly on this blog.  So that others on a similar journey, or even one that is not similar in the least can share in my hope, commiserate with my frustration, and celebrate our milestones right along with us.

We are all people.  When you focus on showing society that autistic children and adults are real people, you will have accomplished something.  No one wants to be sold a bill of goods.  No one wants to see  one side of the story.  So why would we, the autism community, even try to do that?

Write and share your experiences, take those photos and plaster them all over your facebook wall, and bring those kiddos with you everywhere you go.  By doing so, you are showing that our little ones (and not-so-little ones) are a part of society, that they are human, that sometimes they need help, and that in many ways they are just like everyone else.  THAT is advocacy.  Participating in society, carving out a place for them, even where they don’t quite fit.  THAT models for the rest of society how our kids should be treated, THAT will show them why we need funding for research and resources.  THAT tells our own kiddos that they have a PLACE in our society, and THAT creates self-advocates, which is the name of the game.

 

Wishing and Hoping and Praying…

Question Mark Graffiti by Bilal KamoonRecently, I read a blog post by Autism Daddy, and response to that post from another… all centered around the old debate of whether or not you would take your child’s autism away if you could.

And I didn’t respond.

This has become a hotly contested debate, replete with comments like “Anyone who says they haven’t ever wished their child didn’t have autism is LYING!”

Here’s the thing.  Autism is a spectrum disorder, and often co-morbid with many other diagnoses.  Those with children on the severe end of the spectrum probably voice this wish every single day, and who could blame them.  And maybe there are some who even wish it every day for their child on the less-severe end of the spectrum.  You know what?  That’s OK.  That just hasn’t been my experience – it’s not me.  Never has been, and never will be.  Nor do I judge anyone else’s feelings – they are all valid, even if I personally think following this line of thought is a monumental waste of time and energy.

I believe that everything I have experienced has made me who I am today.  I will admit that there are times I wished I had never been married to the ex, but they are extremely fleeting because my next thought is, “But then I wouldn’t have The Boy.” And that ends the line of thought right there, because I couldn’t imagine my life without him, and don’t want to.  I also wouldn’t have met The Man, and wouldn’t be who I am and where I am today without experiencing that relationship with the ex.  Ultimately, it has made me a better person, even if I was miserable for most of that marriage.

And I have always been one to handle a situation rather than freak out.  Instead of running around like a chicken with its head cut off in an emergency, I have always tried to quickly lay out a plan.  “OK, that happened, now here’s what we do…”

I can’t imagine my son separate from his autism.  If you took it away tomorrow, I would have a stranger living in my house.  I doubt he’d love Disney movies as much as he does, and he might prefer playing XBox to drawing and making videos and riding his bike like he does now.  He wouldn’t be as innocent, or as willing to hug me.  Would he even have the same sense of humor? Who knows?  Not me.  But he would be different.  I like him the way he is.

That doesn’t mean that our experience with autism is all rainbows and lollipops, and you know this about us if you read this blog at all.  We are lucky not to experience too many meltdowns, but when we do, they are catastrophic.  We deal daily with issues like “How do we get him to not bring his iPad into a public bathroom, and record video while other people are using it?  How do we get him to understand that saying, ‘What IS it?’ with a sarcastic tone of voice could be thought of as rude? How do we help him get over this obsession with toilets, for God’s sake??”

I have said before that I would love to know him better, and that’s my biggest frustration with autism.  I fear for his future like every special needs parent does.  And I fear society, and how he will be treated as he gets older, and as more expectations are placed on him to conform.

But never have I wished away his autism.  It is the honest truth.

And never will I judge another parent who has.

Like a Smack in the Face

It happened at about 8:15 this morning, and as I write this almost 12 hours later, I am still in disbelief.

The Man called me at work and asked if I had a minute to talk.  “Uh oh,” I thought.  He proceeded to tell me about his encounter with the mobile home park owner where my parents live.

First, some background.  The Boy goes to Grammy’s during the day while we work in the summer, and gets dropped off there after school during the school year.  He likes to walk along the drive that runs by in front of the trailer, always barefoot.  When cars come, always extremely slowly because a) they are mostly old people who live there, and b) there are 101 speed bumps on the half-mile of drive around the small park, he gets off the road to let them pass.

Today, the owner told The Man that we need to keep our “retarded kid inside.”

Yup, you read that right, word for word.

He then backtracked and told The Man that he couldn’t “play” on the road.  He could play on the empty lot at the bend in the road a few doors down, but he couldn’t play in the road because he had gotten complaints, and he had almost been hit by several cars.

Ironically, a sign like this is posted at the entrance to the park...

Ironically, a sign like this is posted at the entrance to the park…

Seemingly unaware of how many laws he had already broken, he went on to provoke The Man even further, and continued to use the r-word even after The Man had corrected him.  I’m amazed this guy didn’t end up in the hospital.  The Man handled it like a rockstar, and ended the conversation before he could get into trouble.  He, too, is still livid 12 hours later.

I got off the phone with The Man and realized I felt like I had been punched or smacked in the face.  I read a recent post by Autism Daddy where he wondered where all the hatred was.  Apparently it lives down here.

The Man, Grammy and Poppy and I are all seething with anger and injustice, but like smart people, we are devising just how best to deal with this worthless human being.  Grammy has a speech prepared for the next time she encounters this poor excuse for a man, and we will have to see how he responds and go from there.  His intent is to piss us off enough that my parents will move out, and his “problem” will be solved.  But you know what?  They aren’t going anywhere.  And The Boy will continue to walk where he pleases.  We won’t engage with this jackhole, and we won’t be threatened or intimidated.  He went so far over the line that he has absolutely no recourse now but to shut up and go away.  Anything else will be met with quick and swift response from us, and it will not end well for him.

I’m interested to see what will happen next.  You?

Our Summer Plan

So, summer break is here.  How did that happen??  One minute it’s May, and the next… Well.  The Boy has two weeks of vacation, just enough time to drive him up a wall.  He is spending leisurely, unstructured days at Grammy’s until ESY starts up.  ESY this year will consist of him meeting up with his teacher at the local library and doing God knows what school-type things for an hour and a half.  And then four weeks out of the summer he will go to a day camp for kids on the spectrum and their siblings, the same one he went to last year, which he grew to love.  And then he’ll have two weeks off again in August before starting up again, one of which will be spent visiting with Fantastic Babysitter and her new baby who are coming to visit (and I CAN’T WAIT TO GET MY BABY FIX!!!).

And me?  I’m not missing the summer break yet.  My job can be stressful, but I do not need the break anywhere as much as I did when I was a teacher.  Plus I live at the beach, so any time I get too stressed…  I don’t want to make you too jealous. ;)

Grammy is being the wonderful grammy that she is, and taking off work a day this week and next to take him somewhere special, maybe the waterpark, maybe a movie to spend some quality Grammy-Boy time with him.  And I get off work fairly early so that we can still go do stuff together.

I’ve seen some other great ideas for adding a little structure to the summer:

  • This one has a theme-a-day which is great to fit into your schedule when you need it or want it
  • These are some great ways to prep your child for the changes in routine, and how to add some structure to the summer
  • And this is a comprehensive list of ideas and resources to ensure brains are still engaged in the summer months

I hope you are ready.  I feel pretty good about it, at least for The Boy.  I hope we still get to spend some family time together, and it doesn’t fly by too fast.  It’s still my favorite season.

Let us know what you’ve got planned in the comments!

Inclusion is still not a “thing”?

While reading the recent NPR article about inclusion, I realized that it’s still a subject of controversy, which puzzles me.  Because to me, the issue of inclusion is about basic human rights.  In America, every kid has the right to a free education, and the notion that some kids who “hinder” or “distract” kids who will actually make a “net contribution to society” and should therefore be stuck in a room somewhere sounds like something out of the 50s and 60s.  Have we really not traveled so far as to realize the “worth” of every human being, and their basic human rights, even in this country?

Wow.

I have to say I’m gobsmacked.  Many commenters were concerned about gifted kids being placed centrally in a classroom so they could help their peers during lessons, as if that were a disservice to that gifted child.  What?  We want to discourage helping others, now?  Because not being placed centrally in the classroom would help her achieve higher levels of giftedness?  Help me understand…

The Boy in his ASD room with compression blankets, sitting atop a pilates ball

The Boy in his ASD room with compression blankets, sitting atop a pilates ball

I am not necessarily a proponent of full inclusion, except when a student with disabilities is best served with full inclusion.  I prefer for my kid to have a safe space and some downtime in his school day, so that he doesn’t have to be “on” all day long.  I love that he has a space where he can be his true self, at least during lunch, and his social skills class.  If he didn’t, he would be ready to blow every day when he got home, and that ain’t good for anybody.  So I appreciate the sort of inclusion he gets – “Inclusion lite”, if you will.

But as I wrote in my recent post, I want him to be able to socialize with his neuro-typical peers, because that’s a thing.  He will need that in his lifetime, in order to succeed to the best of his abilities.  And in my humble opinion, he will need that more than knowledge about the Pharoahs of Egypt.  I want him to belong to his school community, and that just won’t happen if he is stuck in a separate room all day.

I shouldn’t let the trolls get to me, but every human being has worth, and my kid has more than most.  He deserves the same respect as every other kid on the block.  And he does have a very basic right to the same education every other 6th grader gets.

ESY Is Different Down Here

ESY, or Extended School Year, has been a mainstay of The Boy’s summer experience since he was six years old.  I have written about some of his experiences in the past, and he always looked forward to it when we lived up north.  Last year, he struggled with adapting to a summer day camp which did not include computers, and was not like school very much at all, although he ended up enjoying the experience and meeting some new (and long-lasting) friends.

Before we moved here, I asked some parents with whom I had connected in advance, through the autism society’s local chapter whether or not they knew anything about the local ESY program.  They had no idea what I was talking about…

“Uh-oh”, I thought.

When we went through the IEP process this year, the assistant director for special education for the school district was involved (because I was trying to get The Boy into his current program, and being the warrior mom that I need to be to get things done from time to time), and she indicated then that ESY for this summer would be a long-shot.  We would have to prove he needed it with data. “I’ve got six years of data backing me up,” I thought.

And this year’s IEP rolled around and his special ed teacher for language arts and math basically explained that even if he did qualify, which she clearly didn’t believe he did, it was very different from what we had experienced up north.  Down here, it was basically one-on-one tutoring with an aide for a few hours a week.

“Oh crap,” I thought.

I immediately began to devise activities with which I could supplement his summer camp – was there a computer camp or cartooning lessons I could find somewhere (and could I even afford it)?

The Boy’s program teacher called about two weeks later to let me know that they had determined that The Boy would qualify for ESY this year, because he had had it for so many years, and that they would continue to collect data next school year to determine whether or not he would qualify for the following year.

“Yay… kind of,” I thought.

Now we need to determine where this “ESY” experience will occur, and how often and for how long.  Luckily he will have his program teacher, which helps with the continuity.  But it remains to be seen how effective this brand of summer enrichment will be toward maintaining the structure and routine that most kids on the spectrum need through the summer months.

sandy boy