I purchased the book, Against Medical Advice, earlier this week. Amazon said it was the "true story of one family's decades-long battle for survival in the face of extraordinary difficulties and a rigid medical establishment." Sounds good, right?
It was recommended on one of the Tourette's groups on facebook and had pretty decent reviews on Amazon. I was curious. And I bought it.
And finished it within two days. Seriously, this is not a deep read. In fact, it seemed kind of juvenile to read through. I know it was supposed to be told from the teenager's perspective, but it was co-authored by James Patterson (whom I've never read, but I've seen him on TV... ugh, book authors promoting themselves on TV, maybe there's a reason I've never read his books) and I figured there would be something of substance to it. But there wasn't.
And I really was not at all supportive of how this family chose to deal with their son's Tourette's. I'm going to begin at the beginning of the book, and work my way through the various instances that I found fault with since I was, after all, reading this from the perspective of an adult Touretter.
The book begins (spoiler alert) with the family bringing their teenaged son - by force - to an inpatient psychiatric hospital. The son is an alcoholic, and as you read the book you learn that he has been drinking alcohol with HIS PARENT'S CONSENT since he was in his early teens. I don't care what disability your child has, allowing them to drink to the point of passing out to cope with it is NOT a solution. They bring him into the facility and then the parents get cold feet as the son is promising he is going to change on his own. He's an alcoholic, of course he is going to say things like that. The parents say they are leaving and taking their son with them and then are informed that by law, they are not allowed to leave with their son. Something about how by checking him in, there was a mandatory 72-hour hold. They panic, call their son's therapist who tells them if they say the magical words "We are taking our son Against Medical Advice," that legally, the hospital has to let them leave. They go back and forth with the staff for a bit, sign the forms, and leave with their son.
I'm sorry. But this boy was an alcoholic, drinking so much he was sick and passing out. And he was taking heavy-duty prescription meds. That's a fatal combination; and instead of going with their decision they made while clear-headed and not in the hospital, they let emotions rule them and take their son against medical advice. I don't agree with this choice in the slightest. He was putting his life in danger continuously and had been doing so for years; alcohol and prescription drugs is beyond dangerous, this family is lucky they never ended up at the hospital pumping their son's stomach.
The book talks an awful lot about how he tried 60 medications and none of them worked; some even made him worse! About 15 or 20 of those medications were supplements or vitamins, or over the counter things like Benadryl. The book chronicles each medication taken in the back of the book, and yes there are upwards of 50; but here's the thing. There are only so many classes of medication to try; I myself have tried 4 different classes of prescription medications (anti-hypertensives, anti-anxiety, anti-convulsant, and anti-psychotics). The kid in the book tried a few more classes than I ever did, but it wasn't as though he was taking 60 different medications. Medications in the same class work similarly, and in my opinion, once I've tried two or three, I'm done with that class of medication. I'm done pumping poisons into my body that don't work. This family kept pumping their son full of medications, including Risperdal for a very long period of time. I was on Risperdal for 48 hours; the boy in the book is on it for months (or years... not sure which, the book moves chronologically through his life very sporadically). He takes the pills in varying dosages, taking extra medications to "knock himself out" or preemptively taking more pills on days he wants his tics to be lessened. I don't know whether this was "against medical advice" or not; but I do know when I was on these pills it was very regimented. I had to take so many miligrams at certain times every day; the only pill I have ever been prescribed to take non-systematically was Ativan, and even that I am only supposed to take 0.5 mg of (a teeny tiny amount) in a 24-hour period, no more.
I don't know if this boy was actually taking pills as haphazardly as the book makes it out to seem, but my opinion after reading the book was that his medication habits were reckless. And dangerous when you add alcohol into the mix.
Another big problem I had with the book was that the main character sounds very entitled. In his opinion, people should give him a pass for having Tourette Syndrome (along with comorbids). I use my Tourette's as an explanation for some of the things I do, but never as an excuse. The boy in the book gets a one-on-one aide during high school because he is supposed to be confined to a wheelchair (he is falling down a lot and the school district does not feel comfortable with him walking around campus) but acts reckless and dangerous in the wheelchair, so instead they get him an aide to walk next to him at all times, take notes, etc. The boy is also, at this point in time, chain-smoking cigarettes and talks about how he can't go an hour without smoking. He leaves class one day without his aide, and goes outside to smoke (still on campus grounds). His aide, whom he thought was remaining in the classroom, follows him and reports him for smoking on school grounds. The student then goes home and sends a threatening email to the aide, in what he writes is a "rage attack". He is almost brought up on charges, and ends up suspended and when he returns to school he doesn't have an aide anymore.
I'm sorry; but if you break the rules, regardless of whether you have a disability or not, you broke the rules. Yes, in special education we make allowances for students whose disabilities cause them to act in ways that may go against school rules, but there are still consequences for their actions. This book makes it seem as though this boy and this family expect there to be no consequences for his actions, regardless of how inappropriate they are.
The entitlement continues throughout the book. He sounds petulant and "whiny" the whole book. The theme of "but I have Tourette's" continues throughout his entire life. Including when the school district lays out their very clear and concise argument for why he should have to repeat his junior year of high school, including the fact that he was missing multiple classes, turned in no assignments, and as far as the district was concerned, was not doing anything on his own time to make up the work. (His parents did send him to a boarding school for students with special needs during his junior year, but he only stayed a few weeks before dropping out... Seriously? He was given the chance to make up his academics, and he threw it away.) His mom makes a very impassioned argument in the meeting about how he made up a lot of schooling at this boarding school, about how he took online college courses in computer technology, and about how he did a wilderness experience for troubled kids (which she argues should count toward his physical education credits). And then the clincher; she pulls out a folder of all of his missed assignments from the previous school year that she found in his room. Again, they expect that because he has Tourette Syndrome along with other things, that this should automatically mean that all of his late work should count towards his missing credits.
I have never understood students who do the work and won't turn it in, but regardless... I have taught in general education; and I had students who wouldn't turn their work in. There are ways to help them remember homework assignments. In my opinion, this mistake fell both on his teachers and parents. His teachers should have been reaching out to the student, and if that didn't work, his parents to get his work turned in if this was, in fact, a manifestation of his disability. When he had the aide, this should have been a non-issue as the one-on-one aide should have been responsible for reminding him to turn in his work. And his parents should have been keeping up with him. But nobody did and when push came to shove, his work remained missing. (For those of you wondering, they do eventually pass him on to his senior year.)
He is also given or allowed to drive a
And then there is the issue of his "friends". The drug-addict, marijuana-smoking, alcoholic, prescription-drug-stealing friends. The ones who have casual sex and get into physical fights. The friends that his parents prefer he hang out with as opposed to be alone. And I can kind of understand that, but at some point as a parent you should draw a line and kick the drug-addicted friends out of your child's life. And when the son and his friends throw a party in the basement and one of the kids passes out from alcohol poisoning (presumably, the book says he was catatonic on the floor and temporarily non-responsive), the dad - instead of bringing him home or to a hospital - puts him in the car of some of his friends who happen to drive by after making sure that the people in the car "weren't stoned". Wow, real winners.
The book ends in a completely unsatisfying and un-explanatory method. He literally, wakes up one morning and doesn't want to tic anymore. And that's how the book ends. The "most severe" case of Tourette's and OCD and anxiety that his doctor's and specialists had ever seen, just wakes up one morning and is control of his body.
I think you know my thoughts on this, but in case you've missed it, here they are again. If one more person tells me that their friend's uncle's cousin's nephew's friend had Tourette's and outgrew it, I will scream. This does not happen. In fact, there was talk recently on a facebook group about how 100% of people never truly "outgrow" this. Tourette Syndrome gets worse in puberty, and then appears to get better after the onslaught of hormones is done with. Adults don't have specialists to go to anymore, because it is viewed as a "children's disorder" - much like Autism is these days - and by the time someone reaches adulthood with this, you have found a medication combo that works or have coping skills that work. I see a pediatric neurologist, and am one of his very few adult patients, when I move away from Washington, I honestly don't know if I will continue seeing a neurologist or not seeing as they are so few and far between.
This book is supposed to be a window into life with Tourette's, but for me it didn't really seem to be that way at all. There was extreme anger, extreme prescription drug use, and extreme alcohol abuse. I truly hope that my blog doesn't read that way. I am so thankful that I can see, walk, talk, eat (most of the time) and do things like work and drive, that only very rarely do I get down in the dumps. And I know better than to not self-medicate with alcohol or prescription drugs. Living in my brain is extremely frustrating - all the time - but you get used to it, you pull yourself up, and you move on.
So my opinion? If you want to learn what it means to be a Touretter, save your $9.99 and just read my blog. :)