Wednesday, July 6, 2016

"I like camp!"

It's 3:48 pm.
I hear the minivan pull up outside.
I hear the front door open.
I rise and head for the stairs to intercept T on his way up to his room...bracing myself for the tirade that is sure to come about his second day at his therapeutic camp for other children with ASD.
I turn the corner and there he is - stopped midway on the stairs.

And I hear the words: "I like camp."

Wha? How? When? What?

"Stop messing with me", was my reply.

"Nope.  I'm serious.  I love camp.  And it only took one day.  And I met a friend.  Her name is Astrid*.  We played WII together.  And kickball wasn't that bad.  And Rick* is my friend too - we're the three amigos."

I've never actually been dumbfounded before in my life.  Never.  This one takes the cake.

So we hugged, and I held back the tears while thanking God outloud for the blessing of a great day at camp!

*That's not really their names...all names are changed to protect the Aspies.

Tuesday, July 5, 2016

First Day of Therapeutic Camp

"It's worse than a concentration camp!"
"I'm not like those retards!"
"I refuse to go back!"

On and on and on.  For 15 minutes an 47 seconds.  I know, because I recorded it for review with the therapist later.  The entire duration of the ride home from the therapeutic social skills camp T began today.

"I'm done with you until you take me out of this camp!"

The entire thing feels a lot like an intervention with someone who refuses to acknowledge their addiction.

"There's nothing wrong with me now!  I was bad when I started at the last school, and the kids there just never forgot and hold it against me.  But I'm FINE now!  All I need is my mobile therapist and behavioral specialist - I don't need this DAMN camp!"

Over and over I calmly explained that we're doing all of this - including the camp - to help him to improve the areas in which he still needs help.  That he did indeed make huge growth in his 8 years there, but that he still needs to work on some really important skills.

"This is ruining my life!  This is taking up my WHOLE summer!"

No - three hours a day for 5 days a week for 6 weeks.  That's only 1/8th of your entire 24-hour day.

I'm thinking/hoping this is taking on the form of the stages of grief.  In fact we went through three of them on the ride home.

  1. Denial.  "There's nothing wrong with me now!"
  2. Bargaining,  "I'm okay with all of the other stuff these people do - the wrap around services are fine - just not this camp.  Take me out and I PROMISE I'll do the stuff at home."
  3. Anger. "I'm done with you ALL until you take me out of this camp!"
  4. Depression.
  5. Acceptance.

Tuesday, June 21, 2016

Asperger's Doesn't Take a Vacation

It's been 3 years since we took a real vacation (and not just a long weekend away).  And we're just getting by financially. So when we first began to discuss the prospect of a week away at the shore, my knee jerk reaction was, "No - why should we pay all of that money to just deal with meltdowns at someone else's vacation home."

But that wasn't fair to the other kids, or to us.  So off we went on vacation.

The first day or two went actually pretty well.  There was a lot of new an distracting activities.  And lots of FOOD.  Food, being a "prefered activity", ended up being a great time for T and for the rest of us. But as you might have guessed, there were meltdowns, tirades, threats, and slamming doors.  Change in plans because of weather?  Outburst.  Ran out of a preferred snack food?  Outburst.  Refusing to order him two adult portions from the menu?  Outburst.

Still, the brief periods of time when the kids were splashing in the waves, gave us a bit of respite.

Toes in the sand.  Breathing in the fresh salt sea air.  Breathe in.  Breathe out.

Friday, June 3, 2016

Let's all sit around and talk about you... you're not in the room.
We're going to list all of your issues, problems, annoyances, breakdowns, mistakes, angry outbursts, physical aggression.
And we're not just going to do it once.
Let's do it once each....

  • ...for the developmental pediatrician
  • ...for the therapist
  • ...for the intake specialist
  • ...for the functional behavior analysis
  • ...for the psychologist
  • ...for the psychiatrist
I honestly don't know how T can handle it all.  I keep imagining if I had to sit in a room with the people I am supposed to love most - and who are supposed to love me most - and listen to them list my shortcomings and needs over, and over, and over, and over, and over again.

If you're reading this and you're a member of a group or organization devoted to helping kids on the spectrum, please help.  If you're group requires clients to go through these kinds of interviews with countless members of your group...well, maybe your team can do ONE interview?  Or at the least give kiddo something to do elsewhere during these parts of the interview?

Wednesday, May 25, 2016

I see autistic people...

As I have learned more and more about my son's diagnosis and the Autism spectrum, I have slowly transformed into a clinical psychologist.
That guy who cut me off in traffic?  Emotional regulation issues.
That co-worker who can't seem to finish a project?  Attention deficit brought on by depression.
The guy who never wants to meet for a drink when someone else is coming with me?  Social phobia.

And I see Autism everywhere.

I see it in me, my wife, my sister, my parents.  I see little pieces of a puzzle that - when put together just right - form pretty much what we see in T.

The anxiety.  The anger.  The low frustration tolerance.  The desire to keep everything the same, even when it's bad.  The near narcissistic ability to bring every conversation back to being about yourself.

Even though the diagnosis is about 4 years old now, it's still new and I'm hypersensitive.  But as they say, "Just because you're paranoid doesn't mean someone's not out to get you."  I'm not going to ignore these little insights.  I'm going to address them using the same techniques we're learning related to dealing with T's aspieness.

And that includes getting help for my own issues. (See that?  Turned it right back to me again, didn't I?)

Thursday, April 21, 2016

Worst. Mix Tape. Ever.

Having to record your child raging at you, and ultimately physically attacking you is bad enough.  Having to play it back to pick out the most offensive bits is a new level of hell altogether.  
"To hell with you!  I HATE YOU!", accompanied by sing-song whines from 3 year old G, asking "Why is T so angry?!"
Yes. A fresh hell indeed.

Wednesday, April 13, 2016

A Troubling Prescription

Pharmacy Rx symbol used on prescriptions 

For over a year, T has been pushing to leave his parochial school and be placed in our local public school.  We prefer he stay in his current school because it is small and he gets a lot of individualized attention.  As a private school, they do not create or support IEPs or 504 plans.  Rather they collaborate with families to ensure they are meeting the needs of the student.

Last year T shared this desire to his diagnosing physician during our regular yearly appointment with her.  She is a highly regarded Developmental Pediatrician for the Children's Hospital in the city near us, and we have a lot of respect for her.  She's a bit blunt, but I prefer directness to pussy-footing around an issue.  When he raised this issue last year, she agreed that it might be a good idea for him to make the switch to the larger school, as he might have a better chance at finding kids with whom he can connect.  But she agreed with us that we should take it into consideration and make the decision we think is best for him.

Fast forward to yesterday: Same doctor, same office, same T.  Same statement of desiring a move to public school.  This time, however, the good Doctor openly recommends that T move to the public school.  In front of him.  Without clearing it with us first.

Now, I'm actually not totally against this idea.  Really, I'm not.  But moving a child from one school to another isn't as simple as trying a new physical therapy exercise or trying out a dietary restriction.  It raises an enormous number of questions and considerations that reach into the very fabric of our family dynamics and schedules.  Does B also change schools?  We would have to get T to Sunday school from now on since he'd no longer get religion in public school.  Now instead of a couple of uniforms, we have to have 'school clothes' to purchase.  Does he realize he'll no longer have a personal iPad since that is a perk only at his current school?  What about the relationships we've built with the current school staff, who have bent over backwards to meet his needs?  What kind of new influences will he encounter in this school that will then become added behavioral issues in the home?

And WTF ever happened to conferring with the parents before prescribing the treatment?

A troubling prescription, indeed.