The Medicine Cabinet Wore Lego Crocs

I have not done everything possible to help lessen Milo’s pain. I have not attacked his diet. (If you’ve read about the mind-gut connection, you know that there is substantial evidence linking behavior to diet. This link likely explains Jenny McCarthy “curing” her son of Autism. Of course he wasn’t autistic, but he was plagued by disturbing behaviors and changing his diet alleviated that pain.) Milo lives on pizza, toast, bagels, turkey bacon, chicken tenders, pasta, hamburgers and broccoli.  He loves food. He LOVES food. He loves this list of food in particular. But knowing what I know, why haven’t I taken control of Milo’s diet?

Why haven’t I rid our lives of all plastic containing BPA? And limited or eliminated his screen time? 

I have done a lot. I have found excellent Occupational Therapists, talk therapists and behavioral therapists. I got Milo an IEP at school and have worked with everyone there to maintain as much good will and compassion as possible. I’ve found relevant, helpful books and read them to him over and over and over. I’ve held back when he has hit and scratched me, when he broke windows,  emptied his bookshelves, smashed his blinds. I’ve explained him to himself, to everyone in his life, and to strangers, just in case. 

I’ve also taken him to see several psychiatrists. Kids and drugs. It’s controversial.  The consensus is that no one wants to drug their child. It sounds good– righteous and determined. But I did want to drug my child. I wanted to drug him more than I wanted to fix his diet or limit his screen time.  Why?  Because I’m lazy and selfish. 

I’m not afraid of western medicine. Or psychopharmacology. I’ve been helped by mood drugs. My father and grandfather were both surgeons. I’ve had medical procedures that not only improved, but possibly saved my life. Yes, the whole approach could be more integrated. And the way health care is delivered in this country is shameful.  But medicine is miraculous. Consider the emergency C-section, the defibrillator, the epi-pen.

I’m also a fan of meditation, exercise and prayer. I practice all 3 and swear by the results. Milo has learned techniques of each. And when he’s calm, he can Om like an ecstatic monk, and run around the block barefoot without complaining, and listen to the wind and be still, floating in water. 

But when Milo’s mood swings, outbursts, paranoia, and delusions got worse, I turned to psychiatry.  That is an act of pure faith. Pediatric psychiatry is serious guess work. Diagnosing a mental disorder in children is tricky because it’s hard to know if you’re seeing symptoms of something that’s formed or symptoms of something that is forming. Kids are developing, so are their disorders. The way to diagnose mental illness in a child is through medication. If they respond to a medication, then they are diagnosed with what that medication treats. Milo went through two horrific drug trials (see my earlier post about the suicidal 7 year old) before he responded to a mood stabilizer called Lamictal. True, his behavior was consistent with Bipolar Disorder. It was also consistent with ADHD, ODD, and OCD.  We went with Bipolar. We went with Lamictal.

Lazy and Selfish. Actually, it’s laziness inspired by selfishness.

I used to work full time. I spent 20 years in public radio. I was a good producer, and a happy one. I also published a book of poems, several essays in anthologies, and edited a collection of essays by well known women writers about motherhood, and I wrote a column for our local paper.  I loved working. I loved deadlines and meetings and managing people.  My life in language was how I defined myself.  I struggled with work-life “balance” like every working parent in America.  But I don’t necessarily believe that balance is inherently valuable. Some people are better when they are off balance. And some people, like Milo,  ARE always off balance. 

Not long after Milo’s illness emerged and I was caught between my paying job and the job of seeing him through this life, I read an interview with the then CEO of a major national broadcasting company. She lived in DC with her husband and 2 sons. When she was promoted and had to work in NYC she didn’t move her family. Her husband and sons stayed in DC and she came home to them on the weekend. The interviewer asked her if she felt bad about the missed soccer games and music recitals. And her answer was, simply, “I like to work.”  

I drug Milo because I like to work. I drug Milo because the drugs help. And because I don’t want to do battle over his diet or his screen time.  I’m capable of a mighty effort when the task interests me. Or when I know I can succeed. I hate to stumble through things. I hate to fail. I drug Milo because I’m selfish. I don’t want to give up my work, or how my work makes me feel — successful and independent — to fail at being his mother. My selfish desire to take care of myself makes me lazy about taking care of him. 

And yet. School has been a nightmare these past two weeks. Milo has been a disruptive misery and his teachers and classmates have been uncomfortable and anxious. Everyone has lost. And I have been despondent. I stopped working full time in the spring and stopped working completely during the summer in order to be with Milo. He needed to have a successful summer. He needed me. It wasn’t what I wanted, but it’s what I had to do. I put my back into it and it went well.  Part of why I made it through the summer was knowing that school would come and I would get some part of the day back, to work. 

During these past two weeks of school, I took Milo into the woods. I played games with him. I read with him and cooked and ate with him. I took him to pick out books and video games. We reminisced about the llama trek and ID tech camp and his many succeses. I tried to boost his confidence and make him feel comfortable, surrounded and loved. And I tried to find out what the hell was going on. What I got out of Milo was that school was hard, too hard. His perfectionism (as opposed to my selective perfectionism) is causing him to lose his shit just as work is presented. Not only is the school day a mess, I fear he’ll flunk the 4th grade. He’s a smart kid, but he can’t teach himself everything.

So this past weekend we tried an ADHD drug, a stimulant. (We added it to the lamictal and his allergy medication.  We stopped his sedative as that didn’t seem to be helping.)  He experienced no side effects to the stimulant.  And he seemed a little more focused, a little less confused and muddy headed. (A dear friend who takes ADHD medication described the effect as being able to control your concentration, turn down the extra channels of noise in your head and turn up the important voice, the one true voice that you need to listen to and believe.)  Milo went to school this morning with the stimulant in his bloodstream. I stayed close to the phone. No call came. But I did get an email form his teacher that said, “Today was a great improvement! Milo asked questions, accepted instructions, and did more work than I have seen him do over the past two weeks. . . . He seemed far more focused, calm, and happy.”

When I was a little younger than Milo I loved a movie called, “The Computer Wore Tennis Shoes.”  It starred Kurt Russell as a teenager who is shocked by a computer and then turns into one. It’s ridiculous and preposterous. But I was fully seduced by the burden and loneliness Kurt Russell’s character felt because he was so different. And he was defined by his difference. That’s another reason I drug Milo. So he won’t feel that his pain defines him. Instead of his fears and fury, he can be defined by his love for comic books, and Sonic, and turkey bacon, and Legos and crocs and me. 

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7 thoughts on “The Medicine Cabinet Wore Lego Crocs

  1. I am glad that Milo responded so beautifully to the new drug that you gave him. My daughter has been on nearly twenty drugs over the past eighteen years (including Lamictal for nearly seven of them!) for her seizure disorder, and nothing has really helped to control those seizures. I have come to both loathe them and be painfully aware of my own bias against them. I wish continued success for Milo’s fourth grade and for you to find some peace and restoration through your work!

  2. Again, I am riveted by your blog. Keep writing. You will have a book soon. (then the movie, then the musical!). Seriously, though, I do hope the kid makes good, and I feel your painful struggle. Mazel tov for B in the coming weeks.

  3. My sweet friend, you are anything but lazy. You don’t want to fiddle with or wrestle away something that’s a true, simple pleasure for your boy, especially when so many things are messy, complicated, and painful for him; I don’t think there’s a parent alive that wouldn’t relate to that.

  4. My daughter is 19 now. It’s taken me many years to understand the old cliche about adjusting your own oxygen mask first. Whatever helps you, helps him. For us, the combination of a mood stabilizer and a stimulant (only on school days) worked, but it was 10 years of trial and error. Gluten-free helped. But we didn’t even ATTEMPT gluten-free until SHE was 18 and chose it on her own. Go with what works. God bless you.

  5. I get it. So glad.

    It took us a long time to feel comfortable with medicating our son (for ADHD). After about a week on the meds he actually thanked us for it. He said the voices in his head stopped and he had more space in there to organize his thoughts, cool down if he needed to cool down, etc. The meds also allowed him to get through the last hours of the school day which were the hardest for him. We were fortunate that he responded well to the first medication we tried: Metadate CD…an extended release form of Adderall. He’s on a fairly low dose (20mg) and now, after being on it pretty consistently for the past year, doesn’t even take it every day. His choice. The drugs helped him control his emotions too…primarily frustration that was at the root of many of his problems at school. I was kicking myself for not having gotten “there” sooner. I was so hell bent on not medicating him. What a difference it made. For him. For all of us. His self esteem got a HUGE boost. My happy boy is back and after a miserable, tough, fourth grade, fifth grade is going great!

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