I had my first daughter in my mid-twenties. I got married while I was in college and gave birth to Anya six weeks after I obtained my college degree. That, however, was not in my Life Plan. I turned down a chance to compete for a Rhodes Scholarship as well as the Fulbright Fellowship so that I could take care of my baby. I wanted to give my daughter a childhood. A good childhood. Something I never had. So, I put my own Life Plan on hold and embraced housewifery and motherhood at 24 years-old. It was a sacrifice of infinite proportions. Honestly, I didn’t enjoy a lot of it. It was hard.
The best thing to come out of this decision is that I know my daughters very, very well. I have four of them now–15 years later. We have very good relationships. My soon-to-be 14 year-old still holds my hand when we are out and about. It’s not because she’s needy. It’s just her way of showing affection. They are all like that. Even my 15 year-old. We know each other. I know what makes them tick. What they like. What they don’t like. The nuances of their personalities–their brightness and darkness. This is the benefit of the choice I made, and I recognize that not every parent can make that choice. Some people must work outside the home. We have paid the price so that I could stay home. We have little money in savings. A 401k? What’s that? Our youngest child has an autistic spectrum disorder, and the medical bills associated with diagnosing her and her current services just keep on coming. The medical bills associated with diagnosing Grace’s Bipolar Affective Disorder, as it was just recently called, seem never-ending. I would like to complain, but how can I? There are families in Colorado who have just lost their homes in wildfires. Another family connected to a friend of mine just lost their baby due to an undiagnosed heart condition. Unemployment numbers are still high. What I’m trying to say is that everyone has a battle to fight, don’t they? We all have a story to tell, and we all have legitimate reasons to grieve. Suffering and loss are an inherent part of the human condition.
So, what is the first step in getting the right diagnosis for your child when you feel in your gut that something is wrong? Quite simply, know your child. You are going to be your child’s advocate so you have to know them. You have to speak for them because you have a larger vocabulary. You are the primary observer of their behaviors, and you are the one who will provide the baseline for the clinicians. What was your child like before s/he became ill? What is s/he like now? You are the one painting the picture, and it must be as detailed as possible because the clinicians will begin their assessments of your child largely based upon what you tell them. If you don’t know your child, and I mean really know your child, then your child will slip through the cracks and be misdiagnosed.
Consider this example: My friend Mike has two children. He and his wife, Danielle, leave for work at 8 AM every morning, dropping their two girls off at daycare on the way. They pick their little girls up on the way home at 6 PM. They make dinner, bathe the girls, and put them to bed at 8 PM. Mike is the one who wakes up the girls and feeds them breakfast so he sees them for an hour, if that, in the morning. Danielle puts them to bed. She likes to run in the evenings so she rushes through their bedtime routine because she’s anxious to get going on her nightly run. She’s not present for her daughters. If they cry, feel sick, or simply want to be rocked a little longer, then she scolds them for needing her maternal attentions because they are keeping her from what she’d rather be doing. Mike also works out three times a week in the evenings so he doesn’t see his daughters three nights out of the week–only one hour in the morning. Weekends then become prime time for spending time with the children, but then, for most families–working families especially–that’s errand time. Laundry, household chores, bill paying, and other sundry things need doing. The children either get farmed out to friends and family or dragged along. How well do you think Mike and Danielle know their two daughters? Generally, they know them. They all live with each other. When it comes to the nuances of mood and personality, it’s the daycare providers who will know these girls better. This is the reality for many families. What’s going to make the difference is mindfulness or being present with one another.
If you only have a few hours a day with your children, then be present for every second of that time. Don’t rush through the bath and bedtime routine. Don’t watch the tele during dinner. Eat at the table. Talk to each other. Watch how your children interact with each other. Watch body language. Watch facial expressions. How are they expressing themselves? How do they treat their toys? Spend time with them. Play with them. Read to them. Put down the cell phone. Don’t text, tweet, or email. No computers. Cultivate a relationship with them because that’s the currency that will be used when something starts to go wrong. When these things are in place, they are the first things to falter when the brain becomes ill. It often manifests behaviorally through interactions with family members, how toys are treated, toilet habits, speech, sleep habits, and temperament. If you haven’t been present or making your relationship with your child a priority, then you won’t notice when it goes awry. And, noticing is the first step in getting the right diagnosis as quickly as possible.
And, that’s what we want in the end. The right diagnosis as quickly as possible.
For more information on being present, here’s a short article.