Me and the Committee, Looking at the Issue of Medication, Again.
kyra anderson | Friday, October 30, 2009 at 11:47AM In my attempt to help my son, Fluffy, feel at ease in a small group of kids, I’ve enrolled him in several classes over the years. They always start out well, the novelty in this case, works to his advantage. He comes in with equal measures of excitement and trepidation, but usually anywhere from 20 minutes to two or three weeks, internal alarms are triggered and emergency behavior runs the show. Every time we’ve left a class I’ve always said the same thing: he wasn’t ready.
I think it’s true.
Every time it’s happened, I’ve also wondered inside, Will he ever be?
That’s Anxiety speaking--mine in response to his. Our Anxieties do that, my son’s and mine; they dovetail.
I’ve learned to smile benignly at Anxiety, pat it on the head. Aw, thanks for sharing, Anxiety! We’ll take that under consideration! Yes, maybe he will never feel safe, belong to a group, have a friend! That’s very, very helpful, Anxiety! Perhaps my headaches are tumors! Or blots clots! Maybe that nagging ache in my back is slow degenerative nerve disease beyond the hope of cure! Or possibly we’re on the cusp of being homeless and infected with every kind of deadly animal virus swarming the planet!! Ooh! Perhaps it’s plague!!!!!
But thankfully, Anxiety is just one of the members of my internal committee. I also have Optimistic Camp Counselor, Scientist, Shaman, Adventurer, Teacher, Clown, Slacker, and of course, Tony Soprano. Va fagool, eh? Shut the Fuck Up with a couple of plugs in the ceiling comes in handy when the voices get loud and unruly.
We’ve come to points along this road when we’ve strongly considered medication as a tool. In my best moments, I see it as a troop of trained chemical professionals swarming the blood stream, talking everyone off ledges, leading support groups, running packs of panicked kids through fun and challenging agility courses, regulating and soothing and realigning, dancing, la la, emoting, invigorating, doing all manner of helpful things.
We haven’t done it yet, partially because no one can assure me that my fantasy has any merit. I’ve heard of great results with medication, the magic kind and dose found, the issues alleviated, the course of treatment swift and powerfully affective! Yay! Hooray! I’ve also heard of nightmares, wrong types, wrong doses, weeks become months and then years of trying to find just the right combination.
I have no problem with medication per se. I’m the gal who needs to turn over every stone first. It’s the way I’m made.
The thing is, on both occasions when we came the closest and then went a different route, we saw such remarkable shifts, I felt like we’d dodged a bullet. Phew. Imagine if we had gone with medication, we would have attributed the growth to that and not other things like Sensory Integration Therapy, Nurtured Heart Approach, and simply the passage of time. After all, Fluffy is developing every day. He’s delayed, sure, but as the International Renown Child Psychiatrist we consulted with just this very morning said, “There’s more health moving inside these kids looking to flower than there is dis-ease.”
Fluffy is in only a couple of classes so far this year: a swim class, a D&D class, and his favorite--a role-playing class called Dark Ages. It’s held in a giant warehouse, one corner of which has been transformed: a castle here where one claims the kingdom, a cave there wherein the dragon dwells, a thick woods where one dodges arrows and other artillery, a river, a mountain, etc., etc..
There are some computer stations set up through-out upon which the kids activate shields, trade black coal, adjust the number of lives their character has left and a bunch of other stuff I can’t for the life of me figure out. That’s fine since Fluffy seems to know enough and what he doesn’t know, the affable, slightly quirky and almost pathologically placid teacher fills him in. I have my suspicions the reason Fluffy loves this class is those very computer stations; he can’t play games on them but they provide islands of safety in the sea of moving bodies, built-in sensory snacks as our OT would say.
A couple of weeks ago, the regular Dark Ages class wasn’t being held and so the teacher offered Fluffy a slot in his Friday Nerf Gun Battle. Fluffy loved the sound of it so we went.
Now, most of the other parents, okay, all of the other parents drop their kids off at these classes and take off to parts unknown while their kids happily race up and down ramps wielding nerf shotguns, cross-bows, daggers, canons, etc., etc., Friday night is our usual pizza and movie night. I took Fluffy and hung around until Dave met us so we could all tromp across the street for Whole Foods pizza, a favorite of Fluffy’s, before we tromped home to screen WallE for the second time.
The usual Dark Ages class has about six or seven kids and these computer stations, and established, known rules. This rules of this class was brand new, there were no computer stations and it was populated by about fourteen, mostly older kids.
Fluffy was in way over his head but he didn’t want to leave. Any suggestion of that was met with rising agitation. In fact, he was adamant about staying until the bitter end.
He didn’t know what was going on, what team he was on, who were his teammates, who constituted the opposition. He barreled around, calling out, WHO ARE YOU? WHAT SHOULD I DO? TELL ME WHAT TO DO! to the other kids who, after a time, completely ignored him. Every word was uttered at top volume. I saw the kids exchange looks, roll their eyes, nudge him off and say in voices laced with impatience, Jeez, I don’t care! Back off, dude!
When I walked closer to see if there was any way I could help, the kids came over one at a time and asked wide-eyed, Are you Fluffy’s mom? One of the kids pulled me to the hallway with a serious expression.
He was about twelve. He seemed well, overly medicated. His eyes were glazed, sort of fixed, he lacked body language of any sort, standing stiffly as if was only recently in possession of arms and legs and hadn’t quite figured out how to operate them. He’d been darting around in the game talking to himself, not making any eye contact with the kids, seemingly in his own world. “Look,” he said, looking somewhere past my shoulder. “I used to be totally out of control like him until my parents took me to get medication. Now I’m much better. You really ought to get him on medication.”
I didn’t have to heart to tell him the last thing I wanted was to see Fluffy follow in his footsteps in 4 years. We continued to have a discussion about many things, drugs, hyperactivity, acceptable levels and kinds of sound appropriate to use when playing with other kids. He meant well, that boy. He wanted to help.
And Fluffy needed help.
Earlier in the game, Fluffy had been following a boy around and around, trotting desperately behind him, urgently repeating that he, Fluffy, knew how to give Reiki! That he had been attuned! That he was really and truly harnessing the healing energy of the universe! He raced over to me at one point, exasperated, TELL HIM, MOMMY! TELL HIM IT’S REALLY TRUE THAT I KNOW REIKI! I could see that the boy couldn’t care less. At that point, the boy was so irritated with Fluffy, it wouldn’t have mattered if gold coins suddenly started spewing from his mouth.
About ten minutes later, Fluffy barricaded himself behind a make-shift wall. I tip-toed over to see what he was doing and saw him crouched down, his eyes closed, his hands flat out like he was a small mime in a box. “What are you doing, honey?” I asked. “I’m sending my teammates Reiki, Mom. So they can fight better.” He stayed there for quite a while. Poor guy. It was the only way he knew how to participate. Alone behind a wall, sending Reiki to the other kids so they would play better.
Now, I’m not saying this class experience is the reason we’re thinking of medication. It was not the right class for him no matter what. But I tell you, I want to support my son in any and every way I can. If medication will clear some of the internal flooding that drowns out his ability to access his store of health, if it will help him generalize some of the amazing things he’s able to do at home, I’m all over it.
So, we’re here again, standing outside Medications door. We found this great guide, someone trust-worthy, experienced, and sensitive. He’s a ‘last resort medication’ sort of guy, not a ‘medication is no big deal’ sort of guy or a ‘medication is never okay’ sort of guy. My favorite.
I’ve got my whole committee with me. Anxiety is in the back, predictably murmuring dire things about drugs that produce dark thoughts of self-harm, chemical and hormonal upheaval, lifelong dependence, future substance abuse, blah blah blah. She’s back there with the Optimistic Camp Counselor so I can ignore her. I’m going to stay up front with the Shaman and Scientist, Tony Soprano at my back.
Reader Comments (15)
This may sound odd, but look at how well he handled the *knowing* that he didn't know what else to do. When I read the words "About ten minutes later, Fluffy barricaded himself behind a make-shift wall," I was so worried that what followed would be an account of how he was updet and/or hurt himself. (Clearly, that's where *we* are right now...) Instead, he chose to do something he knew he *could* do and is good at! That takes an amazing amount of groundedness.
We are also on the path of exploration about meds. We're hoping that the next thing we try has some effect...before we take that last step. It's never easy, is it?
Sending you love and hugs and understanding.
thanks for this, nik's mom. yes. it's true. he really did know how to take care of himself, how to do what he COULD do, and it was very very dear to see him concentrating so hard on giving what he could. and so gently.
dave and i were floored, actually, by how much was right in the middle of the chaos. no hitting, biting, screaming, hurting of self or others. huge!!!! and he left having had a pretty good time. we chose not to say anything about the difficulties, only energize the positive. but it was a slice of what we see in most social settings, this drowning out of ways to actually join, be a part of.
sending hugs and understanding and my best hope for you all to find answers for your sweet nik!!
My approach is medication is a reversible decision. You can try it and you can decide you like it or decide you don't. I'm happy to talk more about this anytime!
It's a tough call - a really tough call. All I can say is that I often consider anxiety meds for my kids because I know how I am when I'm not medicate - and it's not pretty.
love.
I think you are brave for writing and sharing this and I thank god for that. I see so much of my own son in Fluffy's struggles--to varying degrees for both of them. I truly believe you will know the right path and you will have the courage to change paths whenever necessary. Yes, that's the kind of parent I know you to be. Brave, strong, powerful. A committee? Yes, the strength of many in one.
“There’s more health moving inside these kids looking to flower than there is dis-ease.”
I love this.
You are a very intuitive woman. Go with your gut, line up with whatever you decide, and tell the critics, (inside and out) to get lost.
Love.
BTW, I think Fluffy sending Reiki to the other kids is beautiful. Unconventional, but what a darling boy.
Love this !!!- I am very impressed by his reiki activity - knowing when you need to release the pressure is just the most amazing thing !!
Isnt fluffy showing more and more of this as the days go by !
I will be very interested to what you think of medication
We went thru very similiar stories with our son. He wanted to interact, but was so over the top....he was always struggling. We went the med route---and it wasn't a cure all, but it helped greatly. But it's only one tool in our toolbox; it will never replace daily behavior therapies or sensory exercises. We also only use it during the school year-and hold off on holidays and summer. Now that he is becoming aware of what acceptable behavior feels like for him, he is better able to duplicate it without the meds-that and maturity are leading us to feel he will be able to stop within a year or so. Good luck whatever your choice!
Oh, how I struggled with this issue too! What Christina G said is what I'm hoping for as well: "Now that he is becoming aware of what acceptable behavior feels like for him, he is better able to duplicate it without the meds - that and maturity are leading us to feel he will be able to stop within a year or so." I am seeing this same thing starting to happen with Nigel and his low dosage of meds, and it is very encouraging - both how helpful the meds are, and the fact that we hope he can discontinue in a year.
Also wanted to mention how much I LOVE your view of medication as a tool: "I see it as a troop of trained chemical professionals swarming the blood stream, talking everyone off ledges, leading support groups, running packs of panicked kids through fun and challenging agility courses, regulating and soothing and realigning, dancing, la la, emoting, invigorating, doing all manner of helpful things." For us, I am relieved to say that it is not a fantasy - it is the reality, and it makes the social and behavioral challenges so much more manageable for Nigel. You're right - you do have to find a good fit, but I think it's worth the process. Thinking of you and sending xoxo!
thank you all for the encouragement and especially tanya and christina as your boys are finding help from the medication route, one tool among many, yes?
Hi Kyra, lurker here. We're in Stage 3 (RDI) and at age 5, my son is doing awesome. But anxiety continues. I'm hoping (well, I KNOW) progress with RDI will help, as well as natural maturity, but my gut says anxiety will always be an issue for him, and I worry about that. I'm starting to look into naturopathic remedies and homeopathies. Maybe I'm living in the dreamworld of "he just needs a little Rescue Remedy and all will be well!", ya know? :) We'll try. Your posts often seem to be bang on for what we are dealing with here. Thank you.
Kyra, I think you are doing a wonderful job parenting! Meds ARE just one more tool in the toolbox, and we all need all the help we can get! But there's so many factors to consider-and each child is different. We tried so many other things (diet, positive reinforcement, discipline/punishment, nutritional supplements)with minimal degrees of sucess, before we relented to try meds. I did not want to medicate, at all, and my hubby was completely against it, but when we saw how he struggled to do classwork and interact with peers and his teachers, we wanted a better school experience for him than that. It was absolutely heartbreaking to know he was frighteningly intelligent and yet he was barely passing his first grade class. We started with the very lowest dosage possible and went from there. It took about 8 months of trial and error before we came to a happy medium that helped lower energy levels and increase attention without turning him into a worrywart zombie child. Let me know if there's anything you are curious about! :)
like everything else, this is an intensely personal decision. after many, many (MANY) contentious committee meetings in which my committee nearly came to blows, we decided to follow the adamant advice of a dr who, like us views meds as a LAST resort. he looked me in the eye and said he'd never seen anything more clear cut. he was right, and the meds have worked for my girl. when i brought this up over at my place recently, a mom left a comment that really summed it up for me ..
'It was our neuro-psych who convinced us to about reducing the level of anxiety. “Mrs. Howe, can you learn Spanish when your house is on fire? NO! You’re just thinking about surviving. It’s the same with Jonathan. He’s not learning the techniques you are trying to teach him because his house is on fire and he’s just trying to survive.”
that was kendall's world .. survival. and she wasn't able to internalize any of the self calming tools that we tried so hard to give her while her house was on fire.
while i was struggling to voice the decision i knew we'd already made, i happened to be reading temple grandin's book 'emergence, labeled autistic.' in it she talks about anxiety and medication and her thoughtful discussion of the topic helped the words come out.
i'm glad we did what we did. the meds have not been a magic bullet, but they've calmed the fires. they've given my girl a chance to breathe, to take it all in, to LEARN. but, BUT, i worry every single day about the unknown, unseen, unexamined effects of the meds. EVERY single day.
but as carrie said, it's not a one way street. we monitor our girl to within an inch of her life and we always, always know we can back up the bus if we need to.
i'm rambling .. if you ever want to talk about it, you know where to find me.
xo
Kyra, I just wonder how Fluffy's axiety goes when he is with younger kids, like kids with the same developmental age as he is? If his social developmental age (or RDI stage) is only 3 or 4, there is no doubt that he will feel anxious within kids that are 8, 9 or 10 years old. Actually, when I read your post about the class experience, I don't see a kid with axiety, but a kid who lacks the competence to deal with the uncertainty; who was eagar to prove himself to his peers but but had no idea how to do it. Could it be a developmental issue rather than an medical issue? But you are the Mom, you know the best about your son.
Kyra and committee, My committee and I are contemplating all of the same things. So much red tape to get through though to make all of the committee members feel comfortable with the decision we take (I've noticed in political news stories of late that we 'take' instead of 'make' decisions. Who knew? The ramifications are mind blowing, but I digress.) For the next 8 weeks I am giving Adam St. John's wort while I also search for a specializing psychiatrist or neurologist. My hope is that the St.John's Wort will be enough. If it isn't enough than we will try medication. Or we won't. The committee is still out.
Peace to you as you contemplate the rocks and the hard places.