Tag Archives: autism

The Classification of “Meltdown”

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Rainbow pencil

Rainbow pencil (Photo credit: @Doug88888)

There is clearly a difference between a tantrum and a meltdown.  Tantrums are thrown for effect, while meltdowns are thrown because the ability to communicate something has evaporated, and tolerance levels have been exceeded in some way.  But I have noticed my own language lately, in describing behaviors as a “meltdown”, when they aren’t really.  With The Boy, I tend to classify all of the behaviors leading up to a meltdown as “having a meltdown”, so that others who do not have living-with experience with autism will understand.  Many, many times, we are able to avert the big blowout.  In fact, they have been fairly rare, at least in public.  But the behaviors beforehand are no picnic either, and require me to be firing on all engines, brain clicking along, coming up with solutions, ideas, and decisions at lightning speed, much like a battlefield medic.  It’s really a crisis for both of us.

Wouldn’t it be great if there was some universal way of describing this “ramping up” of anxiety pre-meltdown?  Wouldn’t it be great if that became part of the autism awareness and acceptance vernacular?  Like one of those smiley face charts at the doctor’s office that they use to help you decide how much pain you are in, so that you can describe it to them accurately?

“Boss, I’m going to be a few minutes late to work, we are at a level orange on the meltdown scale right now, and hope to have the situation back down to a yellow shortly.”

“Honey, I think we need to find our way to an exit.  This looks like a green heading into yellow territory.”

“Hello, Mrs. Vandenberg, I just wanted to let you know that we had a pretty rough morning, and got up to hot pink because his favorite shirt wasn’t out of the dryer in time for school.”

Of course, the application would probably vary from person to person, but it would provide a little more information than just, “he’s having a meltdown”.

What’s your opinion?  Let us know in the comments

Eye Contact – Not His, Mine

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English: 0I’ve noticed that on bad mornings, or during and after a public meltdown, that I avoid eye contact with pretty much everyone I come into contact with.  Some would say that reaction is a clear indication of embarrassment, I guess, but it isn’t — I’m not at all embarrassed by my son and his autism.  That’s who he is, and it isn’t going to change.  It’s nothing to be embarrassed about, because we can’t control it, we can only manage it to the best of our ability.  And sometimes that’s not enough to avoid disrupting our lives and those around us.

I think this natural reaction of mine is so that I can avoid reading other people’s emotions about it.  Whether they are anxious, judgmental, sympathetic, or they pity us, I don’t really want to know.  I don’t have time to care about their feelings about the situation.  I have to make sure The Boy is OK, and then keep it together until I can process my own feelings in a private environment, so that I can go about my day and do what needs to get done.  I don’t want to have to deal with them, too.

Maybe that seems harsh, but it’s a method of survival and coping that has developed naturally.  I can’t take care of everybody else.  My son and my owns self are my first priorities.

Nothing’s Impossible

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The Single Mothers who have Children with Autism facebook page recently posted a reminder that taking a break from your routine and taking care of yourself is important.  Yet many commenters responded bitterly that it just wasn’t possible, and people who say that mean well, but that’s the last thing single moms need to hear.

I disagree.

Nothing's Impossible

Nothing’s Impossible

People, if something isn’t going right in your life, you have to make the change happen.  Do you think a respite fairy is going to land on your head and grant you three Friday evenings to yourself?  I have no nuclear family in the area, yet I am able to take an evening off every once in awhile.  Granted, I make a decent wage, and I get that it can be extremely hard financially – money was extremely tight after my divorce, because I was digging myself out of debt.  I know that feeling.  But there are ways, and you have to find them!  Insisting that it’s impossible and defeating yourself before you even start will turn you bitter, and as a result, everyone around you, including your children will suffer.  I know people like this.  Their negativity is like a virus.  And when they don’t take time for themselves, they are more apt to run out of patience and snap at their kids, become exhausted and ill, and it spirals downward from there.

Some ideas:

  • A break from routine is not necessarily a break from your child(ren).  I know routines are the safety zone for kids with autism, but I have written before about how amazing it was to stop and get myself a sweet tea after a meltdown-y morning – it was FANTASTIC, and it had a lasting effect.  Something small like that is a great way to start treating yourself kindly.  Lord knows our kids won’t always show us the same kindness!
  • I am lucky that my child enjoys latchkey – it is relatively inexpensive through the school, and gives me a much needed break from ALL kids after work, because he doesn’t like to be picked up until 5pm.  I don’t pay any extra for keeping him there until 5pm, and it is an excellent opportunity to unwind a bit before the evening routine begins.
  • Groups like The ARC often have respite grants for members, and membership dues are often inexpensive or even free.  This is a GREAT resource that is oftentimes underutilized, which means you have a great chance of getting some money to help defray the cost of even a family member providing some babysitting for you.
  • Have a friend with a special needs child?  Share the babysitting costs, OR offer to watch the kids for an hour, if she’ll take them next time.
  • Feel like your calendar is too full to take a moment for yourself?  Pencil yourself in.  You need to be a priority in your own life.  There’s no excuse for that.
  • Can’t find quality help?  Ask at your school – sometimes the parapros (or aides) need some extra cash, and already have a relationship with your child.  Maybe your local high school has some National Honor Society students interested in becoming special education teachers (and they probably need service hours and would do it for free).
  • Sometimes just having an extra pair of eyes in the house while you do chores (or sleep!) can be a weight off your shoulders.  Again – get a high school student to come in and be your eyes and ears (or entertainment for the kiddos) while you get stuff done.  The more time they spend with your kids, the more they will learn about what to do – special needs babysitters in training!
  • Bartering is getting big.  Is there something you could do for someone in return for them watching your kiddos for a bit?  Bake some banana bread?  Fix a networking glitch?  Give someone swimming lessons?

If none of these ideas will work for you, I feel for you.  I completely understand that some children’s needs are severe, meaning breaks a just going to be harder to come by.  But you can’t stop trying.  You have to find a way.  We special needs parents are in extreme danger of burnout and battle fatigue, and the very reasons many moms and dads say they “just can’t take a break” are the same exact reasons they must.  Our children need us at our best, so we can handle the worst for a long time to come.

Pranks and Autism

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PranksThe Boy has had an increased interest in pranks lately, and has even gone so far as to persuade Grammy to purchase the old snakes-in-the-peanut-brittle prank from a joke shop for him.  She did, and brought it with her when they came to visit, and it was a big hit, at least with The Boy.  The rest of us quickly tired of trying to smush the “snakes” back in the can.  After a day or two, the novelty wore off a bit, and we were off the hook.

At school, The Boy chose a different prank.  An old-school prank that could actually hurt people: the old tack-on-the-teacher’s-chair prank.  And in a roundabout fashion, his ASD teacher discovered that The Boy was the culprit.

She handled it magnificently, understanding that at the root of this was his autistic self not understanding that the prank can be funny in cartoons, but could actually hurt people, and is so not cool or funny.  They discussed it, she told him she would keep his secret, and resolved to keep an eye on him, hoping that the talk did the trick.

And then he was caught being sneaky again.

He wasn’t doing the prank again, but he asked to get a drink and she followed him.  And he made several stops in vacant classrooms and hallways where he should not have been.  And he got busted.  He was unhappy, but she told him that she couldn’t trust him at his word anymore.  He values his independence so keenly, but that was what had to be taken away because of his actions.  They developed a plan to earn it back, and he will have to have supervision at the beginning of this week when he leaves the room, then the supervision will be gradually lessened until he earns his independence back at the end of the week, IF he has complied with the terms of the agreement: going only where he’s supposed to, no pranks, no sneaking, no meltdowns about the rules.

He’s learning – this is foreign territory and I am so thankful that he has a teacher that gets that this is an autism/social cue thing rather than a disciplinary issue.

All that’s left is encouragement that he can do this, he can earn his independence back, and hope that he learns from this experience!

A Wonderful Night

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Lugging the instrument...We had another concert tonight, and The Boy performed was excited, performed well, and made us proud.  I didn’t have to ask more than once for him to get dressed when it was time to go, he lugged his baritone out to the car without being asked, and had no problems once he was dropped off with his classmates in the designated room.  When it came time to perform, he went to his spot, and played well, often without having to look at the music (how does he do that??).  He maintained his composure during a piece where some of the other kids in the band had to stomp and scream (although he was struggling not to collapse into a fit of giggles), and was proud to stand for pictures after with his grandparents.  Then we went for dinner at one of our favorite restaurants, and he shared his brownie sundae for dessert.

A non-routine evening is often great fodder for a meltdown, or at the very least, is a source of anxiety, but tonight was pure excitement, joy, pride, and satisfaction.

And since this type of night is my kinda thing, I’m an extra-proud mama tonight.

Jobs and Autism

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I posted a story on the Simple. I Just Do facebook page yesterday about a carwash in Florida that was developed to run entirely with autistic employees, (and was started by a family with an autistic son, no less).  And I encountered a staggering statistic – an unemployment rate of 90% for those with autism.

Food Barn pin from first paycheck job. / c. 1989 - Nate Hofer

Food Barn Pin – Nate Hofer

That is a very scary number.

The article by Doreen Hemlock of the Broward County Sun-Sentinel quoted Michael Alessandri, director of the University of Miami-Nova Southeastern University Center for Autism and Related Diseases, as saying, “Most people with autism can work. They can be very successful when given the right support. There just aren’t enough job opportunities with the right support system.”

The Man and I have discussed starting our own business a great deal.  Part of that, I think a large part of it, is that if we are the owners, we can create our own opportunities for The Boy to be employed.  And just like many, many families with autistic kids are turning to homeschooling so that they can tailor their child’s education according to his/her individualized needs, I think many, many families have or will turn to entrepreneurship for the same reason.

I love it.

I am so inspired by all of this.  The world isn’t ready for this influx of people with autism?  Well, let’s make it ready, one kid, one family, one family-owned business at a time.  Bring it.

Don’t Knock Awareness

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autism awareness ribbon

I keep seeing facebook and blog posts, and tweets stating that awareness is just not enough.

Of course awareness is not enough. Acceptance would be lovely, access to therapies, respite care and services would be grand, assurances that my child will be cared for after I am gone would be divine.  And of course, those of us who have the energy will continue our fight for these basic needs (and yes, they are basic needs, as any family touched by autism can attest).

But, we can’t do it alone.  We need armies of people to help us demand that these basic needs be met.  And we don’t have armies, yet.  We can’t even get our own rag-tag assemblage to march under the same banner — we can’t even decide what our banner should say!

So I say we continue with awareness, and not just some event with a puzzle piece on a poster that says “Autism Awareness Night”.  Puzzle pieces, posters, literature, and every autism family in a 50 mile radius in attendance, so those NT attendees can glimpse the spectrum in all its glory: the sweet smiles, the small victories, the hand-flapping, the meltdowns — all of it.  We cannot rely on large national nonprofits to do the work for us.  We have to get our kids out there.  We have to make our presence the norm.  We have to be unapologetic.  We have to use every teachable moment.

Doing all of that creates awareness.  And awareness is where armies are born.

The Show Must Go On (Without Us)…

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The Stage

The Stage by Luminitsa

My parents are in town for a bit, for The Boy’s choir and band concerts this week (and also because they haven’t seen him since Thanksgiving and were missing him big-time!), and we went to a musical put on by the district in which I work.  The Boy even dressed up in his dress-up clothes to attend.  We arrived, purchased our tickets, as well as flowers for PITA, who runs the show, and finally raffle tickets for some baskets of goodies.  We found our seats, and enjoyed the first half.  At intermission, The Boy and I got up to stretch, and buy a small treat.  We purchased our M&Ms, walked around the lobby while we ate them, and returned to our seats.

Before the end of the intermission, they did the drawings for the raffle baskets, and that’s when things started going wonky.  Remember that The Boy has only had a few experiences with raffle baskets, and luckily for him at the time (but not so luckily for us at it turns out), he has won virtually everything he has attempted to win.

But today, we didn’t win.

And even though I had prepared him for this possibility (taking pictures of the baskets, assuring him that we could always purchase the contents on our own), he began to melt.  And we had to leave.  Luckily, I was prepared for this, and had even scoped out how far we were from the aisle, making sure we wouldn’t cause too much disturbance if we had to leave.  I have learned from past mistakes, it seems (why is it always at a play??).

The Boy is still upset, wanting to have a “funeral for our luck” – clever even while not comprehending the larger concepts, here.  And he will probably be in a funk for a little while.

So while we had planned to go to the show and then for dinner afterwards, we’re all quickly shifting to plan B.  Thank God for take-out!

Baby Steps to Adulthood

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Tonight, I had everything prepped for Hummus-Crusted Chicken, went into the fridge to get the hummus, and… no hummus.  How can you salvage that recipe?  Um, you can’t.  I know I bought some on the previous grocery trip, but somewhere along the line, the hummus jumped ship.  So what to do?  I needed to run to the store.

I offered to The Boy the option of staying home, as I have a few times before.  He has always said no, a little afraid of the responsibility, and convinced he isn’t old enough.  But tonight, he was contentedly watching Spongebob videos, and responded that, yes, he would like to stay home, while I took five minutes to run to the store and back.  I reminded him that he could face-time me from his iPad if he needed anything, and I took off.

The whole time, I felt like I had a weight on my chest, but I drove carefully, moved quickly and efficiently into and out of the store, and face-timed him on the way home.  “How ya doin’?”

“Fine.”

“What’re ya doin’?”

“Watching Spongebob.”

“I’m on my way home.”

“OK, Mom.”

“See you in a minute!”

“OK, see you in a minute.”

“Bye!”

“Bye, Mom.”

Movin' On UpAnd a minute later I was home.  “Are you home?” he said when he heard me come in the door.  I responded in the affirmative, told him how proud I was of him for being so mature and responsible, and he was visibly excited and proud of himself.

Will I be taking off by myself to the movies anytime soon?  Hell no.

But this is a proud mama moment for me.  This is a baby step toward adulthood for my little man.

I Hate that Sound…

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frustration

frustration by Sean MacEntee

One of the worst sounds to my ears is the sound of The Boy expressing frustration.  Partly because, if left unchecked, it could lead to a meltdown, or perseveration on some negative thing.  But mostly because he is 11, and I have tried and tried for years to teach him to ask for help when he gets frustrated, and instead he continues to do this thing…  This “ARGGHHHH!” thing, to which I think I am supposed to come running and solve his problem.  Or the extremely loud self-talk that sometimes accompanies it (but which I can’t understand, because it is often coming from the basement).  I don’t ever respond, except to say, “Do you need help?”  I rarely get a response, just more “ARGGGGHHHH!” and indistinguishable self-talk.  Beyond that question, I do not respond, knowing that if I do, he will learn that I will try to anticipate his every need, and instead, I want him to learn to communicate his needs and ask for help, even when frustrated.

And so, I will wait him out, turning on some music to drown out the “ARGGGGGHHHH!” until he comes to me of his own accord, or gets interested in something else.

But that noise is just about the worst…