Posts

Showing posts from August, 2013

We're (ALL) Doing The Best We Can

As most of you know, we're been doing this autism thing for almost 13 (anniversary of the first diagnosis in 2 months!)  Over 15 if you count the blissful denial period.

In that time we've seen a lot of shit both inside and outside the community.  Too much to list here.  Just say, it can be disheartening.  We've seen tons of good stuff, too.   Much more than the bad.

But I'd like to mention something I've seen going on within the community.  And that is giving advice as if you were the expert/parent.  Saying "This is the way it should be done, and I KNOW BEST."

In one case recently, I saw a parent advise another parent that she should kick her older teenager out if he didn't buckle down to the rules.

WOW!  You have no idea what is going on with that child or parent.  You have no idea what the family dynamics are.  You have no right to make another parent feel inferior because of their parenting.

When a person puts a question out there, they are bari…

How Much The Cost?

I was pondering tonight the tens of thousands of dollars we have spent in the last 13 years to try to help our children deal with autism.

Direct and indirect expenses.  Conferences on therapies, since we have mostly had to run our own ABA.  Conferences on biomedical approaches (mostly fallen by the wayside.)  All of the travel expenses associated with them.

The trips to therapies-occupational, speech and physical.  The therapy itself often paid for by insurance.  Therapy camp, which has cost us probably 15-20 grand over the years not counting the thousands of dollars for travel expenses which are most likely double that if not triple.

Travel to consultants.  I always say we're an hour from everywhere.  But some of our consultants have been 3 or more hours away.

Special diets, always out of pocket.  Therapy toys for the home, always out of pocket.  7 years of diapers x 2 boys (just glad it wasn't longer.)  Because we felt we were better able to afford it, we didn't ask for …

Taking a break on my husband's dime

I've made no bones about this parenting 3 kids with autism being a easy row to how.  To mix my metaphors.  It's hard on both of us.

I was telling my husband the other day that I had a crazy person moment.  I was just teetering on the edge of frustration, depression, and auttie kid stim overload.  And I had the kids in the car taking them away from him so he could do his thing-ride his bicycle for miles and miles up and down mountains.

I got this idea in my head that I just wanted to keep going.  I thought 'I'll take them to Baltimore.  And we'll visit the aquarium.  And then we'll leave and we'll just drive.  Drive and drive and maybe never stop.'  It was like those thoughts you get when you're standing on top of a cliff and a little part of your brain says 'Jump!  Why not?'  Except a lot stronger.

I mean, crazy, right?  3 autistic kids and me, who is dangling by a fucking thread, going on a road trip like fucking Thelma and Louise.

But some…

I Remember Charles

The grade school I went to was a VERY small parochial school.  Very small.  As in, in the time I attended for 4 years, the K-8 school never had more than 12 students all in one room.  Yes.  That small.

When I was in 7th grade a new student came who was one year behind me.  As is the wont of ignorant adults, no one told us anything about him.  We came to realize he had delays.  Looking back on his physical appearance and delays with autistic characteristics, I have come to realize that he probably had Fragile X.

He was desperate to fit in.  Desperate for a girlfriend, because the other big boy in school had one (not me, I didn't fit in either, although better than him.  And she had big boobs.  Something I still don't have.)  And he was constantly in trouble.  Whatever trouble he didn't get in by himself, some of the others were willing to goad him into.  And our school allowed paddling, although that was rare.  Unfortunately, it wasn't rare for Charles.

Remembering back…

I Eat My Stress

I admit it - I eat my stress.  I always have.  And I hate those people who say "I always lose weight when I'm stressed.  I just don't know what to do!" 

Because, let's face it, society loves thin people.  And the thinner you get, the more people love you.  If you get super thin, people say how worried they are about you.  But the fatter you get the more people blame you for your weight.  The more I blame myself for my weight.  If only I had more self-control and weren't such a slob.

I actually had a male client at my workplace say "You've gained weight, haven't you?  A lot of people feel better if they lose weight."  Really?  Yes, I had weighed myself that morning and had gained 10 pounds.  So, thanks for rubbing salt in that wound.

And while things with Nathan are just now starting to improve, I continue to feel anxious and depressed rotating with feeling okay. 

So, I started back on Weight Watchers online.  I started exercising.  I got a e…

My Child Wanders

This evening my husband ran out to get some corn at a local farm.  I was finishing my supper when I realized the house was unnaturally quiet.  I had a moment of panic, then realized Paul had come back and gotten our 12 year old to go with him on the tandem bicycle.

I panicked over Nathan's absence because he is a wanderer.  An elopement risk.

This year over a dozen children with autism have died after wandering away from safety and into danger in the US alone.  While most were smaller children, several were adolescent.

With autism, the risk of danger does not always come with age.  50% of children with autism have some degree of elopement.  Our older son has wandered away, but this was mostly through inattention to what he should have been doing.  Nathan is often driven to leave.  Drawn by the remembrance of gum machines.  Or just wandering, trying doors (which in our small town are often left open.)  While he loves water and pools, we have rarely given him access to them, and ha…

FBA as a learning tool with your ASD kid

Functional Behavioral Analysis is one of those things on the learning curve that is autism.  That curve is SO steep that you get mental whiplash over and over and over.  FBA comes in pretty early though, on the steepest and most vertiginous curves that you will probably face in the road course that is autism.

FBA consists of breaking a behavior down (and it's always an unwanted behavior, which is stupid, because wouldn't you want to analyze the whys and wherefores of desired behaviors in order to increase them?) into its ABCs - antecedent, behavior and consequence.  First, you define the behavior in very narrow terms (not aggression, but biting other students), then the antecedent and consequence.  In this case the antecedent might be "peer in student's personal space" and consequence might be "peer goes away."  Then you take lots of data and look at it for a pattern.

Today, however, I used it as a learning tool with my teenager, who had a hard day.  A…

ASD, PDD, SPD, ODD, NVLD, OCD....I Ain't got time for all that shit

In some of the boards I (used to) follow ('used to' because it's all Facebook now), it seemed strange to me that people would list their kids after their name.  And list EVERY SINGLE diagnosis in the family.  It felt like it was a points based system and the more initials your kid had after their name, the further ahead you got in the game.

So you would see:

Emily (9) OCD, MD, SPD (major depression), gifted, severe nut allergy
Johnny (7) ASD, ODD, SPD, bipolar verbal
Mikey (5) NVLD, OCD, SPD, sensitive to gluten
Ellie (3) PDD-NOS,SPD, seizures, asthma, multiple food allergies
Mary (35) Depression, Fibromyalgia, high blood pressure
Duane (36) Aspie (undiagnosed), SPD, high cholesterol

And I was like, 'Dude, it's just about potty training.  There aren't points counted on just another potty training comment.'

Besides which, I win!  I mean, right?  I got three on spectrum.  I won the game.

But really, that other stuff?  It's the go-along stuff.  SPD, OCD - …

One Of THOSE Parents

When I was a resident I would see parents of severely disabled kids come through our clinics. Wheelchairs or walkers. Or severely MR (that's what we called it then, instead of ID.). I'm sure some of those kids had autism, even though that word wasn't really on my radar then.  But I never really wondered about their personal lives. How were their marriages?  How often did/could they have sex?  Did they ever get a weekend alone?  Did they have friends?  Did they have friends that 'got it?'. How did they handle thoughts and worries about the future?  Did they ever wonder if they would have a life that didn't involve changing diapers and feeding tubes and fighting the government for new wheelchairs and appropriate placements?  How much guilt did they have about their inability to fix things? Or for their part in causing their child's disability?  How many 'What ifs' did they have?  How did they handle ignorant schmucks like me who didn't have a clue…

Practicality

Today we saw a new doctor in our never-ending quest to make Nathan's life (and our lives also) better. It was quite a good visit. We saw an education specialist who gave us some very good, very practical things to try. Then we saw the doctor who specializes in both autism and brain injury in children. She gave us excellent advice and some very helpful connections for seeking respite and a therapeutic inpatient facility in case behavior disintegrates back into the deeper realms of hell. She also changed his meds a little and told us the direction she would be heading if this plan doesn't work the way we hope. We are definitely on board with the changes she is suggesting. 
I should be thrilled. Instead I feel like crying. In fact I very nearly am. 
Why? (she asks rhetorically, since the answer is the purpose of this blog.)
For one it was a pretty stressful visit. Nathan did not understand that he would be seeing TWO providers. So when the man stood up to discuss our case with the d…