In the midst of my whining about my week, I got an email that reminded me that cars and cats notwithstanding, there are other roads and other issues that are not just small piranha bites, but great big Great White Shark weeks.
Let’s-call-her “Abbie” asked me about our decision to put Ray on medication. She’s being pressured by her doctor and doesn’t know what to do.
Abbie, we faced the same decision point. We agonized, we worried, and we knew that any direction we went would be unknown, scary and would make someone irritated. Someone who would get in our face and say “How could you… I told you… Don’t you think…?” There were several things we used to close out the many, many voices around us and to keep focused.
The first thing we kept in mind was Ray’s history. Ray was BORN fussy- unhappy and anxious and not eating. He was only comforted in my arms as a baby. He was also born bright and verbal and funny, but with an “edge” to him. There’s something about his face that I recognize now in other children’s- his face is tight and sharp around his cheeks, and his eyes are wide-open and active. I’ve seen it in my friend Linda’s son; I’ve seen it on the faces of other children I work with. Something about the eyes… a little too alert and an awful lot of anxious thinking.
The other thing that I held on to was that I can never, never predict Ray’s moods. Some of the time he’s wonderful- he’s funny and he’s creative and he’s loving. I like to think of these times as the “real” Ray- the person he is until the neurological storms in his brain cloud his thinking, hijacks his reactions. These storms appear to have little relationship to events around him- I can’t find the cause and effect. I can be firm and we have a lousy day. I can be stressed and frazzled, and he’s fine. Or the other way around.
We are always surprised when Ray’s issues come up- you would think that we would be used to this by now. But the up-and-down is so hard. We spend an awful lot of time calming him down; an awful lot of time being consistent, consistent, consistent- until we collapse from our own exhaustion and our own loss of control. We’ve tried monitoring his diet- does that trigger things? We’ve tried keeping things calm. Sometimes these work- sometimes they don’t. Of course, stress triggers it- that we know. But beyond that… ? We always feel if we could find the “key” that triggers him, we would solve this. But we can’t.
Ray’s Tourette’s tics are the least of his issues. When he was spitting- well, yes, that was gross. That made him different. But his throat-clearing, the shuffling of his feet at doorway edges, the tapping of his fingers- those get lost in the midst of his overall movements. I know he moves on purpose to hide his tics- to take the edge off of them. He’s constantly shifting. And we can live with that.
But what hurts my heart so much is when he can’t follow a conversation- when he asks a question, and when I’m two words into an explanation, he says “Never mind!” and wanders away from me. It hurts when homework can be so, so hard- not because he doesn’t know it, but because he can’t pay attention long enough to do it. We call those the “butterfly moments” because when he’s trying to pay attention to you, he’s really with you, but otherwise, he’s off and drifting.
Unless he’s anxious, which is when he gets fixated and oppositional. Lately, he’s been fixated on football. It’s expanded beyond UGA football, to hating Auburn, to wanting the Green Bay Packers to win the Super Bowl- even though he’s never been to Green Bay, nor have any affiliation with them. But because I’m rooting for the Steelers, because Emily was cheering on Auburn, he has to take the other side. It’s funny, and it’s annoying because everything, everything becomes a fight.
“Who do you want to win, Mommy?” “Ok, Ray, I’ll take the Steelers because we used to live near Pittsburgh.” “Well, I think they’re awful! I want the Green Bay Packers!” It would be funny if it weren’t my own child with whom I can’t even share a fan moment.
So- that’s Ray… a long history of erratic, unhappy behavior that has no clear-cut label. A recipe of a little autism, a little Tourette’s, a little ADHD, and a little ODD. Some people call these “manufactured labels for bad parenting”. Well, I gotta tell you, they’ve not seen my son when he’s coherent and when he’s clouded by neurological storms. I can see the differences; and I can assure you that there is a clear-cut biology involved here.
Which led us to the latest, newest doctor who recommended medication. ”You wouldn’t withhold insulin from a diabetes patient. You wouldn’t say he should be able to control his heart if he needed heart medication,” she said to us. “Well, his brain isn’t making enough of the stuff to keep him alert. Being this way is not his choice- he’s reacting to the brain chemistry in his head. It’s already there. It’s like telling someone who has had too much to drink that they aren’t really drunk- it’s just an excuse. No, they’re reacting to the mixture of chemicals in their brain. But their chemicals wear off. Ray’s doesn’t. And so we have to help him get the balance right. If we don’t help him, there are lots of studies that find that these kids self-medicate. And they don’t pick things like coffee- they find that they like themselves better on cocaine and meth. I’m not telling you your kid is going to become a drug addict. But we do know that kids who are not helped through legal means are much more likely to help themselves through illegal means.”
I gotta tell you that we did not like her approach. She was scaring us and she was more than a wee bit arrogant.
But she was right. I did my own research- and to quote from Essortment, “Illegal drugs are used to obtain a “high” feeling or to escape from reality. Ritalin works to improve one’s awareness and to improve their attention span and concentration. The two drugs serve two completely opposite purposes. Many counselors have claimed that children that struggle with ADHD, without the help of Ritalin or other prescribed medications, may be more likely to use illegal drugs as a way to help them cope with the stress of ADHD.” The use of meth and cocaine are only barely related to the use of stimulant medication- they’re much more related to demographics of poverty and parental upheaval and school failure. And we’re working with the teachers, with tutors and with my own knowledge to make sure that Ray does not fail.
There are other sides that claim that drugs are the easy way out- that I’m teaching my son that life gets easier with a pill and not from hard work- that I’m looking for an easy fix for… once again, bad parenting.
And once again, I know- I KNOW that while I may get tired and we are certainly responsible for aiding some of the misbehaviors when we get tired and irritable, most of Ray’s issues are biological. We have a daughter who does not have these same issues. I have taught hundreds of children- some with issues, some without. I come from a family with a history of Tourette’s and issues- a family that I did not grow up around. There is a biological root to some of this.
And so, we looked at medication.
The thing we held on to was that medication was a choice that we could always unmake. If a particular dose, a particular prescription didn’t work, or we didn’t like what it was doing, then we could take him off of it. No harm, no foul was the agreement. We would follow our parental instincts and snatch him off of it if it wasn’t right for him.
And I have to say… medication has made a world of difference for us. It hasn’t changed Ray’s basic “Ray-ness”- it’s just taken the edge off. I’m less worried about him. I can see him building up successes to keep him going. I don’t cry all the time anymore. We still struggle with him. That “in-between” time between when his Daytrana- which is a stimulant- and he goes to bed with his Clonodine is… challenging. But we have more good days than bad. The bad days- wow… they’re really bad. The good days- well, they’re sweet.
The Daytrana makes him more aware- and so, his tics are not necessarily worse, but he is aware of them more. The Clonodine seems to have alleviated some of the more significant tics- the overt ones. The ones he has now can be hidden easier. He’s more focused in his anxiety now- it’s not as free-floating. He can sometimes describe now what he’s anxious about- and that insight has been marvelous because we can help him when he can share. And sometimes, he can’t. But inch by inch, we’re seeing progress. And regression. But mostly progress.
My goal with medication is to teach him what those neurological synapses feel like- so that he can find his way back to them when he needs to have success. If yoga or meditation can help him find his way as well, then I’ll try those too- but he’s still young. That level of concentration is something to grow into- and he can’t even start up that hill until he learns what it feels like.
But I was bound and determined that I was not going to let my issues and worries with medication get in the way of what my son needed. Could we have done this without medication? Possibly? But at what cost? I’ve read up on nutritional means- but it’s hard enough getting him to eat anything, much less “good for you” stuff. I get vitamin supplements into him by pure will and out-stubbornning him. He DOES eat a “balanced” diet- mostly. But I decided that I was not the food police because I couldn’t control that much of an 8-year’s life. If I were to control his eating to that degree, he would not learn control of himself in other ways. And so, we teach good nutrition. But we do not control his every choice. I give him freedom within structure. And medication helps us with that.
I also had to keep in mind the needs of his sister- who has her own issues. I have to be there for her. And let’s not forget that James and I need a break with just each other sometimes. We have to be there for our friends and our family as well. And let’s not forget our pets. Ray is not an isolated set of issues- he’s part of a system.
*I* know that I am not drugging my kid into submission. Heck, I can still barely keep things stable as it is. But I do know that 1) this is biological, and biological causes require biological fixes- and environmental changes that can create biological change, 2) we made the best choice for Ray and for our entire family at the time, 3) we make a new choice every single morning, and 4) as he ages, the issues will change, and our solutions to them may change.
And the last thing I know is that we made this choice very, very carefully with a lot of informed thought. I would NEVER tell another parent what to do- they have to make their own choices very, very carefully-keeping in mind what is best for their child and what is best for their family.