Sunday, June 22, 2008

Changing the Byline

I've been wrestling with a decision in regards to this blog. This post has been germinating since April, when The Kid was re-diagnosed: the bipolar diagnosis was dropped, Aspergers was added, and the ADHD, prominent as ever, remained. I've dreamed that this blog is a signpost for some mother, out there in the middle of the night, googling for answers to her questions about her little kid, who can't function in school, who has temper tantrums way beyond what she'd ever expect of a child before she experienced them, and had been given an indication that these troubles with her child were not from shitty parenting, but from something psychiatric, neurological, brain-based. I could never truly be a guide or an expert, but I've hoped to provide a comforting beacon, You aren't alone.

I don't want that beacon to stop shining, but I want so badly to erase The Kid's history of being considered bipolar from the face of the earth. He was so wronged by being given that diagnosis, and the medications that go with it. I want to irradicate the notion that my child was unrecoverable, as conventional wisdom considers bipolar a life-long struggle, one that is viewed by many as only treatable by medication. I took the advice, and gave him the meds, and we started a spiral of violent behavior and school struggle and weight gain, until the pictures I took of The Kid, his face swolen and heavy, his moody depression and way-too-early-cynicism rendered him almost unrecognizable. I couldn't believe this was it, that my boy was this person, was going to remain this person, and was going to grow into the teen and the adult that would constantly bring me trouble: spending too much, drinking or doing drugs, police reports: when I looked to the future, it was bleak.

I finally cocked my guns and went into the psychiatrist and told her I was done with medications. I wanted to see him off of them. It took so long to recover, it got worse before it got better, and if there is one thing I want my beacon to say to the late night googlers: Anti-psychotics cause withdrawals that make the withdraw-er psychotic. Bipolar. It takes months for the effects to go away. So next time you hear of someone crazy who's gone off of their meds recently, keep in mind that this is not necessarily proof that the person really is crazy and needs the medication, but proof that the drug is leaving the body. For us, it took about 45 ugly days from his last dose to see my baby again.

It sounds strange, but the official autism spectrum disorder diagnosis, the Asperger's, was greeted as good news to me. Autism, while horribly disabling and lifelong, comes with strategies we'd not tried before. There is recovery, and recovery that isn't entirely dependent upon medications. I know so many moms of kids with Autism that would think I'm nuts for saying that, but after being where we've been Asperger's is like a big glass of ice water on a hot day: not like we'd never be thirsty again, but refreshing for now.

And so, the byline to this blog is changing. The Kid is not Bipolar. He still hasn't come out of the cookie cutter, but now when I look into the future, it's just as foggy, and I still have concern, but it isn't as bleak.

16 comments:

Liz Ditz said...

I've been thinking about you & The Kid ever since the Harvard Contretemps came out.

And don't overlook the resources at social thinking.

wheremytruthlives said...

Hope is beautiful wherever you find it.

I'm relived and happy for you both that he's been rediagnosed. Looking forward to hearing about the next steps.

Mr Lady said...

And now, to change the header. BUBBLES.

Em said...

I'm very happy to hear that the new diagnosis offers you more optimism. Anytime our kids are correctly diagnosed, we have so many more opportunities for success. I look forward to hearing more about your new directions.

Leslie Dillinger said...

This is positive stuff, in a way. We can work with this. I'm glad things are looking up, however slightly. Love you and The Kid.

Milehimama said...

How did you get the BP dx dropped? Did you get autism added first?

We got off the psych meds but son still has BP dx... I would like to get it dropped off his record, but I'm worried it will mess up his IEP...

Glad to know it's at least possible!

lyndsey said...

I am so happy for you and The Kid. Words cannot express. This is the very reason that even though I sometimes think C would benefit from meds, it just scares the crap out of me and I would rather just have her "as is" then go through the possibility of what you have. I'm so so glad that you had the strength to say NO and tried it your own way, which ended up being the right way.:)

molly_g said...

Milehimama:
The dx was dropped because he doesn't meet the criteria in the DSM. There has been no effect to his IEP, as he still qualifies for services. He has always had a 'physical disability' definition because of the ADHD, and now added to it is Aspergers (ASD). There is no way to retroactively remove mention of bipolar from past IEP's, but future ones will not mention it.

jaci said...

You are such a great mom! The kid is so lucky to have you. I love you and the kid and miss you!

Diane said...

This sounds quite positive. I'll be thinking of you both.

I am Trish Marie said...

My youngest daughter has quite a bit of health issues. A metabolic disorder is at the root of it, so completely different that what you are dealing with. But we dealt with a misdiagnosis at first. When we finally had the correct diagnosis, it was such a relief. It was techinically bad news, and everyone expected me to react as such. But instead, I was hopeful. We were finally on the right path.

Stephany said...

I'm so happy for you that you stopped that bad dx train in it's tracks---this really brings tears to my eyes, because I was not able to get anyone to listen for so many years....well, anyway, take care, and walk tall, way to go!

((HUGS))Please keep telling your story.

Stephany

noname said...

I did that with my 16 year old. I told his doctor that we were done with the meds and her diagnosis. When she asked if I wanted him to stop 'now', I said yes, totally forgetting about what I'd read that explained the need to wien/wein, whatever it's called. She said ok and we went home to start the worst, most frightening chapter in his whole mental health saga. It truly does take time for the meds to 'get out of their systems'.

His new doctor, after reviewing his entire mental health history, asked, "What on earth did she do to him?" and I had to agree. The previous one jumped to bipolar and prescribed a pharmacy of pills. And offered more if I wanted him to take more.

He's now down to just sleeping pills as we feel most of his issues could be coming from disrupted sleep patterns. He's still very much a moody teenager but he's so much better than he was.

I'm very sorry for writing a novel in your comments section but the few posts I've read here really spoke to me. It's a scary place to live when you don't know where to go for help, or recieve such horrible help from so called reputed doctors. My heart goes out to you and I hope things continue on a better turn for you guys.

wrongshoes said...

I just found your blog and am intrigued. I'm a mom with Asperger's and my DS (3.5) is also probably both Aspie and ADHD. I have not even considered putting him in school at this point because it would be like trying to break a wild horse.

Glad I found you!

wrongshoes said...

Just read an article in "Skeptical Inquirer" called "The Bipolar Bamboozle" and thought you might appreciate it. It specifically mentions children being way over-diagnosed and medicated.

jess said...

I'm so glad to hear that things are looking up for you and your son. !st time here but I can relate a bit- my youngest brother was never really properly diagnosed with anything but now he's 20, a HS dropout, and generally up to no good. He never had an easy time growing up and I can still see the struggling little boy inside of him but I don't know how to help him.