Thursday, March 18, 2010

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

23 comments:

Tracie said...

What a ridiculous mess! I might get lambasted for this, and I'm certainly not a medical professional, but get over the pot already people! For real! That should not be a reason for denying him benefits (especially if he isn't using now) Smoking pot does not make you bi-polar....and he certainly wasn't smoking it in kindergarten when he started treatment for his disabilities. To me it looks like the idiots are just trying to find an excuse to deny him benefits.

I'm glad your husband found those rabbits. Poor little things.

TechnoBabe said...

You must be exhausted. I would be. My hubby has bipolar disorder and I can understand the strain and having to fight for every benefit with SS.

Willoughby said...

That is a mess! I agree with Tracie's comment, he surely wasn't smoking pot in Kindergarten! I hope you get it all straightened out soon.

KWombles said...

I'd be worn out, too, from all the trekking around and the stress of the appointments. ((())) I hope the appeal goes well. Might be time for a new neuropsyc, though. :-(

Jennifer Jayhawk said...

Wow! I feel exhausted just reading through everything you've been doing.
I hope things get easier for you.

Valerie Marie said...

Dear ATM! I pray that the appeal will go well! You must be exhausted. Think of you all ((hugs)) xoxo

Joanna Jenkins said...

I yi yi, you have been on the run! The court denial due to pot smoking is nuts. I am so sorry. I hope it gets worked out and Big Kid gets the support he deserves.

Rabbits under the hood is a hoot. Eight inches of snow is not. Yikes. I hope this is the last storm you guys get.

Hang in there ATM and safe travels and up and down the mountain.

xo

Brenda said...

I believe the attorneys and the S.S. folks are in cahoots over the disability issue. It appears, from everyone I've ever known who's applied (I personally know 4) that you will be denied at least once or twice no matter what,,,unless you hire said attorney.

Nezzy said...

Oh the system always upset me more often than not. I have had students with bipolar disorder as a retired Special Ed. teacher. You've fought a good fight, sister. Take care and do you have a good attorney, 'cause the system will walk all over your.

God bless and have a wonderfully blessed day from the hills and hollers of the Ozarks!!!

Chicago Mom said...

What a mess! Good luck with doctors!

Charlie said...

The whole thing stinks so badly that I can smell it out here.

Heather said...

Wow.....that made me tired. I can only begin to imagine how you feel.

I totally understand the statement where you said "the only time he felt emotionally "normal" was when he smoked pot". Not personally, but we have bi polar disorder in our family and that one sentence has been said more than once. So we have a lot of not "normal" going on around us since I work for a police department and having weed in my house probably wouldn't go over very well. :)

You are like the energizer bunny.....going and going and going....

I was happy to read your post today and know that you hadn't dropped off the earth.

Cheryl said...

I am speechless. I can't believe that after everything he has been through growing up, his diagnosis, all the documentation, the medications, etc. That they would deny him the first time. That is crazy. I know that they do deny the first time in many cases, it is a given, but not when it is so clear cut. I hope the appeal goes well and the judge has a clue about his illness and also what he recently went through.

As for you, I don't know how you do it. You have to be so tired and frustrated. I hope you are taking care of yourself. I'm glad you have a good hubby, who will make sure of it.

What did you do with the bunnies?

Been thinking about you and miss you.

XXXXXXX
Cheryl

Green-Eyed Momster said...

I can totally relate to feeling emotionally normal that's why I smoked pot for over 20 years.

Maybe if you move to California, Big Kid can get a prescription?

Sounds like you've had your hands full. Good luck.

Hugs!!

Nezzy said...

I just wanted to thank ya for hoppin' over and leavin' a sweet comment.

Ya'll have a great evening!!!

Stinkypaw said...

Not an easy one... argh, medical system sucks no matter which side of the border we're on! Hang in there!

Jeanie said...

Aargh! What a mess. I have to agree with Tracie above. I hope you can get through the friggen' system and get BK the help he needs. He (and you) deserve a break.

debra said...

My week? Not as intense as yours :-)
xo

Green Girl in Wisconsin said...

It just shouldn't be that difficult. Or impossible to get a decent shot at fair treatment. You must feel so spent working for your boys the way you do.
Want me to meet your judge with a convincer? Or send a couple Italian cousins his way?

Rootietoot said...

Oh for pete's sake... whatever happened to the idea of doing hat it takes to make a person feel better? The whole pot thing...I wish this country would just get over it already.

As for you...well, best wishes and warm sunshiny thoughts ~~

Selma said...

The whole thing really is laughable and also quite infuriating. You handle everything so well. I'd be banging my head against the wall. Sheesh.

Murr Brewster said...

I wonder what the doctor would have said if Big Kid said he had rabbits in his car.

My thoughts go out to you.

Marla said...

The system is seriously broken. Thank goodness for people like you willing to fight for our kids.