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.

Tuesday, April 12, 2016

You Are Under Surveillance

u r under surveillance

Over the last year, T had\s become more aggressive and unpredictable in the manner in which he reacts to disappointment and change.  When told they can't watch TV until later, B and G might whine a little.  But a gentle reminder that a.) it's not that long to wait and b.) continuing to whine will result in loss of that privilege altogether is enough to smooth that out.  They make peace with  it and move on.

But for T, the whining is quickly replaced by yelling, shouting, name calling, cursing, verbal threats and - in some rarer cases - physical attacks.  (He's a pretty large pre-teen, so these are no longer easily handled.)  So we've enlisted the help of a new resource: a local foundation that provides wrap-around support to families who have medicaid coverage.  

Here's the catch. The evaluation requires that T be observed "in his natural habitat".  School, community, and home.  He does not act out in school.  He does not act out at community events, like scouts.  So on the first two observations - at which he was unaware of the observation occurring - all that was seen was a bit of 'distractibility'.

Next stop: the in-home evaluation.  So the evaluator should get an eyeful, right?  Well, not necessarily.  T almost never shows these reactions when strangers or family friends are around.  While discussing this with the evaluator, I mentioned that I almost think I need to catch him in the act on video.  She thought this was a splendid idea.  So - starting yesterday, I now roam the house with my smartphone at the ready to engage audio or video recording to catch him in these moments.  He knows I'm doing it, and insists it is because I want to embarrass him and that I will post it online.  
I have become an undercover police officer.  A private investigator.  The creator of a sting operation in my own home.  I now get the 'pleasure' of reliving these moments while I edit them together for the evaluator's viewing.  I only hope that this foray into the world of behavior modification stakeouts is helpful in securing the help we most desperately need.

Monday, April 11, 2016

This isn't going to be easy...

Danger Ahead

My name isn't important.  Call me "Dad"...three other people in the world do already.  What is important is the difficult path my wife and I find ourselves on with three kids.  It's already littered with rocks and roots seemingly strategically placed to trip you up: bills, family dynamics, work, etc.  We're doing our best to traverse this trail.  On it, we're leading two of our three children - pointing out the trip hazards along the way, clearing the brush, and holding back the sticker bushes.  I'll refer to them as B - the boy - and G - the girl. Most of the time they make it through unscathed - a few bumps and bruises and scratches, but generally happy and healthy nonetheless. 

But our Third child, the oldest (I'll call him T), is not as easy to lead.  Sometimes he is charging ahead, falling flat on his face, and then blaming us for his bruises.  Sometimes he makes himself dead weight, causing us to have to drag him along, straining our backs and legs that are already pushed to the limits by the treacherous trail.  Other times (becoming less frequent by the day) he seems content to follow and let us guide as we do with the others.  It's a crap shoot - and from day to day, moment to moment, we don't know which T we're going to have with us on the trail.

This is the story of being the parent of a child "on the spectrum".  Specifically a child with Autism Spectrum Disorder - Level I.  Otherwise known as Asperger's Syndrome.  I'd love to tell you I am penning this for you, dear reader.  I do hope you gain some insight, understanding, solace, and camaraderie in reading these posts. But it's really for me.  There aren't many with whom I can discuss this.  The busy life we lead, made even busier with the time and energy required to care for T leads me with little time to seek out formal therapy.  So I'm hoping the bits and pieces of time I have to devote to this little corner of the Internet will be an adequate substitute if not stop-gap for that help.

Pack out what you pack in.  Leave the trail cleaner than you left it.  Most importantly, watch your step.  This isn't going to be easy.