Super Hero

Today, and every day, I am so thankful for my son Ethan.  I have thanked God for him every day since he was born.

He is a caring big brother.  He is a talented baseball player.

He loves Legoes.  He is the best friend you will ever have.  He likes to play his DS.

He is funny.

 He is happy -- has always been happy.

He is a great cartoon artist.  He is kindhearted and empathetic.

He enjoys playing kickball. He is fiercely loyal.  He is brilliant (his teacher's words, not mine).

 He loves candy.

He has been diagnosed with Attention Deficit Hyperactivity Disorder.

Maybe this comes as no great surprise.  I have been fighting the label since it was first suggested to me when Ethan was 4 years old.

I felt that it was a catch-all diagnosis used for any active child.  I felt that it was an easy go-to for teachers: Tell the parents their kid has ADHD.  Drug the kid.  Get the kid to become "another brick in the wall".  Problem solved -- the hexagonal-peg kid will now fit into the square educational hole. I felt that ADHD was not really a disease, but a rampantly overdiagnosed  illness that was fabricated for children with challenging temperments or children of bad parents.   I felt that Ethan would be fine, that he would grow out of it, that he would prove everyone's assumptions about him were wrong.  That was until his last Parent/Teacher conference.

To hear his teacher, with tears in her eyes, talk about how much she loves Ethan, and how much it upsets her that, many people, including Ethan, think that he is a "bad boy" shakes me to my core.

As Ethan's teacher went through the litany of techniques that Ethan uses to simply help him focus, I was humbled by how hard he has to work just to get through the day.  I never knew how hard it was for him.  I am so proud of my little boy.   He is utterly unable to control his impulses.  He has no filter -- what comes into his brain, comes out of his mouth.  His occupational therapist, classroom teacher and educational team offer excellent support. They have tried many different therapies with him to help him do something so seemingly simple as competing one lesson.  Ethan has a set of two desks where he sits by himself as he is too distracting to other kids, he is provided with sensory breaks every hour, he has an air cushion to promote balance, his chair has a Theraband on its legs to offer tactile stimulation,  he has "fidgits" to manipulate in his hands, he chews gum for oral stimulation, he performs physical activities at his desk, he wears a weighted cushion around his neck to calm him, but even with all these options, his teacher says he is floundering.  He is intensely frustrated and he is angry.  His grades are beginning to suffer.

Ethan can not stop. He. Just. Can't. Stop. Moving.   It is becoming harder and harder to find my Ethan.  His teacher's parting words were,  "You have to do something".  I have never felt more hopeless, or more like a failure as a parent.

Ethan is the sweetest boy you could ever know, but the problem is, most people do not really know Ethan.  They "know" the Ethan that they see twirling out of control on the walking trains, the Ethan that they hear making loud sounds, the Ethan that chews the tops off all his pencils, the Ethan that can not sit still for more than a few minutes, the Ethan that rolls down the hallway at school.  All they see is his behavior, not him, and they judge him for it.

It is easy to be embarrassed by Ethan's behavior, to feel judged by other parents, by teachers, by coaches, even by family.  On one hand I want to scream he has ADHD leave him the hell alone, but on the other hand I don't want him to be labeled for the rest of his life -- to have something "wrong" with him.

Ethan's ability to fit in is becoming more of a problem the older he gets, and that is starting to affect his self-esteem.  All children must learn to conform to varying degrees, but they must also be enabled to express their unique gifts.

It is a mistake to force our children to fit into prescribed molds.  In our competitive culture, we tend to view mistakes as negatives without realizing that they are a way to learn.  We are obsessed with the notions of success and failure, with "good" behavior, with perfection.  We judge a child's actions as success or failure according to our expectations, not through the eyes of a developing child. Eventually, the child internalizes both the standard and the evaluation: "I failed to live up to the expectations, therefore I am a failure." Ethan believes this of himself, it breaks my heart. He wants so desperately to do the right thing, but he can not seem to figure out how to do it. He is a good kid.

I am mad, and I am angry and I am scared.  I want someone to blame.  I want to blame the midwife who broke my water which caused the cord to prolapse and Ethan to enter this world via chaos and an emergency c-section.  Maybe those few moments without oxygen changed his life forever.  Maybe if had been born naturally like his sisters were with Pachelbel's Cannon welcoming him, his world would be full of calm.  Maybe if we hadn't lived in a home with lead paint he would be more "well behaved".  Maybe if he ate less processed food, he would "settle down".  Maybe ... maybe ... maybe.  Maybe I always knew, but just didn't want to accept it.  Maybe I am going too far in trying to protect him, but isn't that my job?

So ... what to do?  Joy and I have been struggling with this decision, it seems for years, but more pressingly since January 2011 when we got his official diagnosis and a (as of yet unfilled) prescription for Metadate CD, a psychiatric drug that will mess with the neurotransmitters in Ethan's brain.  I have an intense reluctance to use any addictive, brain-altering drug on Ethan's still developing brain.  A drug that has possible side effects including of insomnia, stomach pain, vomiting, aggression, restlessness, hallucinations, motor tics, dangerously high blood pressure, suicidal thoughts or death.  Really?  Death?  How can I as his parent, as his ultimate protector, even consider giving him something that has the potential to kill him?

Proponents of the stimulant drugs would say that they "work" because, indeed, they do alter the mood, thought and action of the drug taker.  The drugs would make Ethan focus, they would make him sit down and shut up, they would make him conform, but at what cost?  Should I give my son drugs because he is inconvenient, because he is a nuisance, because he is annoying? 

It is hard not to feel bullied into giving Ethan drugs.  I know it would certainly make it easier for his school.  Our pediatrician would say, "If your child had diabetes, you would give him insulin wouldn't you?"  What can I say to that?  But diabetes is a disease verified with blood tests, ADHD is a subjective diagnosis.  Sure, we will try the Feingold diet -- a gluten-free diet, with no processed foods, and no refined sugars. Of course we will buy organic fruits and vegetables.  Yes we will give up dairy. Yep, we will go to counseling. Homeopathic remedies? Why not?  Biometric Feedback? Bring it on.  Metronome Training? We will give it a shot.  We will even try going to a chiropractor.  But mood-altering, addictive, psychiatric stimulant drugs?????  I just can't imagine giving him that pill.  I know it could be a miracle, but what if it is not?

I clearly remember the last time I nursed Olivia.  Joy and I had decided that we wanted to try and get pregnant again and that involved me taking the drug clomid beginning on the third day of my cycle. Clomid was contraindicated for nursing -- meaning you could not take the drug and breastfeed, and Olivia was a very happy nursling. For many months on day 3 of my cycle, I just couldn't put that pill in my mouth.  I wanted one more month of the "for sure", not ready to try for the "maybe".  When it was finally time (the whole biological clock ticking and all), I literally nursed Olivia up to the moment I swallowed that pill, crying the whole time.  That pill was the miracle that became Charlie.  Maybe the Metadate CD will be the miracle that becomes Ethan ... or maybe I want just one more month of "for sure".

The day that Ethan was born, I swore to love him the best I could, to surround him with beauty, to feed his body and his soul, to give him the best of everything ... never did I think that might include handing my baby a pill to swallow.  A bitter pill.  Ethan is my beautiful, beautiful boy who struggles on a daily basis to navigate his world.  I will do anything in my power to help him.

He is my superhero.

To infinity, and beyond!