Clusterflucking and Update on Big Kid

Arrggh.

Sorry I haven't been around, but I've had 12---no kidding---12 appointments regarding all the boys in the last week and a half. 9 of them were down in the city, which necessitates a minimum 45-minute drive each way.

Here's a funny. After days of warm weather, on Sunday night, we had 8 inches of snow. Monday morning, Hubby backed my car up the steep driveway (I'm a good driver, but a notoriously bad backer upper. All the crushed solar lights that line the driveway are a testament to that). He scraped my car off, kept it running to warm it up for me, and lifted the hood to check the windshield wiper fluid because the trek down the mountain was promising to be muddy and messy.

What did he find?

Rabbits. Live rabbits.

Really. They were laying on top of everything to find shelter from the snow.

Last year, I wrote about Big Kid's court case for disability benefits. Although he's been treated for his disabilities since Kindergarten with full documentation, and he has been extensively treated since his breakdown away at college, we had to go to court.

Even though 4 doctors and therapists who have treated him for over 10 years and a 5th doctor EMPLOYED by the social security administration to evaluate him on THEIR behalf concurred that he had a significant impairment that necessitated benefits (his medication alone costs over 500.00 a month without insurance), he was denied.

Why? Because he told his doctors that the only time he felt emotionally "normal" was when he smoked pot. He confessed to them that he would seek it out whenever and wherever he could. All of them agreed that self-medicating is not abnormal for people who have bi-polar disorder (one of his diagnoses). However, some pencil pusher with the SSA decided that he was only bi-polar because he smoked pot. The judge agreed.

Our advocate got a bit pissy with us because Big Kid had confessed this information to his docs.

But really??? WTF? If you can't tell your medical professionals---who are trying to make you better---then who the hell can you confess this to? All of his doctors got a bit indignant over the whole thing, because they KNOW that smoking pot doesn't cause the genetic disabilities that Big Kid has.

So for the past year during the appeal phase, Big Kid hasn't gotten high. He's been ready for a pee test 24/7.

Yesterday, we had several appointments. Big Kid was out of oxygen, so I brought a replacement tank down from the mountains. Kitty brought him to a location between her house and mine, so we could do a quick changeover and then I could run him around to his meetings.

We changed the tanks and then made a revolting discovery. Kitty forgot the "key" that opens the tanks in her other purse. Oy. We had to run all over kingdom come oxygenless to find a hardware store in an area none of us was familiar with. Finally we found an AutoZone and bought a pair of pliers.

Anyhoo, after our morning meetings and lunch, Big Kid had an appointment with his neuropsych. A couple of months ago after he got out of the hospital, I wrote about an issue we had with this doctor and his staff. Although I thought things were smoothed over, I might be wrong.

He basically accused Big Kid of being high at his appointment. The kid was tired from the lack of oxygen incident, and from all of his other meetings (we were at the college, and the campus is HUGE---he had to do a lot of walking). And on top of that, since his illness, he's just not right. He still has significant short-term memory problems, which is what we've been telling his doctors. He's set up for a complete cognitive and neurological evaluation in a few weeks.

The problem is not that the doctor thought Big Kid might be high. He was rambling in disjointed trains of thought which has been the norm since he got sick. The problem is that the doc might have put in his NOTES that the kid *appeared* to be high. Since we're submitting new evidence to support his disability appeal, when the SSA requests doctors' notes, they're going to specifically request anything that has to do with pot.

So today I have to convince our family doc (who has taken over Big Kid's recovery treatment) of the necessity of ordering a urine test at a lab immediately, so that we have documentation to support our assertion that although the boy might have appeared to be high, it was an effect from his illness, not from recreational drugs. And then I have to drive down from the mountains AGAIN to take him to pee in a cup.

Sigh.

How's YOUR week?

xo