Listening to your gut- parenting a complex child

Before I became a parent, I knew everything.

I was going to be the best mom! I was going to raise well behaved, articulate children who ate all organic food and played imaginatively with hand carved, wooden toys….

….and then I had Charlotte.

From almost the very beginning, I could tell Charlotte was smart.

I know, I know, all moms think their offspring are the most brilliant creatures to walk the earth, but I assure you, she is above average on the intelligence scale.

She walked early, she talked early, and at 4 years old she has the most advanced vocabulary of any child her preschool has ever tested.

She’s smart, she’s adorable, she’s creative, she’s precocious…..and she also has Attention Deficit Hyperactivity Disorder (ADHD), suspected Sensory Processing Disorder (SPD), and Anxiety.

Life in Charlotte’s head can be difficult. Her ADHD means that she finds it very difficult to focus on things that don’t stimulate the pleasure centers in her brain, and almost impossible to tear herself away from activities that do. She’s always moving, always climbing, always running…..and often acting on impulse without thought, like the time that she jumped out her bedroom window because she wanted to play in the backyard, or the time she painted the underside of our kitchen table with pink spackle because she thought it would look nice. When I asked her, “honey, didn’t you hear that little voice in your head telling you that you might get hurt, or that mommy might get mad at you?”, she replied, “I don’t think I have that voice, Mom. Or maybe it’s just asleep.”

I first suspected that Charlotte wasn’t operating the same way as her neuro-typical peers when she was about a year old. She was constantly on the go, and it didn’t take me long at all to find out that “baby proof” did not at all mean the same thing as “Charlotte proof.” She was always extremely curious, but unlike the other kids I saw at daycare with her, she didn’t play. She’d bounce from one toy to the next, without ever engaging with any of them. She was extremely rigid, and would have a meltdown if anything didn’t go according to how she thought it should or would. Her mind was always 10 steps ahead of whatever she was doing at a given moment, so if I said “no you can’t stand on top of the bookcase”, she’d be inconsolable because I hadn’t just ruined her pretending to be Wonder Woman, I’d ruined her plan to fly through the air and save the children in a small town in India from the scary monster who was attacking them and their entire families and preventing a small boy named Jake from growing up to become and airline pilot and fly her to Disneyworld some day.

I brought my concerns up to her pediatrician, her daycare, anyone who would listen to me. Charlotte’s dad has severe ADHD, and I knew it was a possibility that she had inherited it from him. Over and over again I was told, “she’s too young to know for sure”, “she’s an active 2 year old”, and “we can revisit this when she’s 6 or 7 if she’s having trouble in school.”

But I knew something wasn’t right. Other moms could take their kids to Target without having to call security multiple times because their child ran off and hid. Other moms didn’t have to lock the bedroom doors at night because their child walked right out the front door at 2 am to go play. Other parents didn’t have to install window alarms so that they’d be alerted if their child decided to climb out and jump 6 feet to the ground…again.

Eventually, on the advice of a colleague who is also a special needs mom, I called the Developmental Medicine Center at Children’s Hospital in Boston. It took 6 months to get an appointment, but once we did, they finally confirmed what I’d been saying for months: Charlotte has ADHD, combined type (hyperactive and inattentive). I’ve never been so relieved to get a diagnosis in my life – because a diagnosis meant she could get HELP!

It’s been almost year since she was diagnosed. Since then, Charlotte has been getting regular Cognitive Behavioral Therapy to help her understand and regulate her emotions and impulses, and Occupational Therapy to help her deal with an under-responsive sensory system. She has a 504 in place in her preschool, with accommodations to help minimize distractions and help her to learn. On the advice of her Clinical Psychologist and her Developmental Pediatrician at Children’s Hospital, she’s been taking medication to help mitigate her symptoms for about 8 months. It’s been a slow road, and we’re still working on finding the right meds and the right doses, but she articulates that she feels more in control of her own body and her own mind, and that’s all a mom can ask for.
Charlotte will be 5 next week, and while most days I think it must be pretty tough to be her, things are definitely on the upswing. As she gets older, she gets more aware that she operates a bit differently than the majority of her peers, and we’re helping her to understand that that’s ok. Some days are better than others, and some days just suck, but it’s a process. And I wouldn’t trade my kiddo for all the perfectly behaved, “easy” kids on the planet.

If there’s a nugget of truth to be had from this experience, it’s this: LISTEN TO YOUR MOM INSTINCTS.

I know my kid. I knew that something wasn’t quite adding up. I knew she was frustrated, and didn’t understand why. I knew that this wasn’t so called “normal.” If something doesn’t seem right to you, ask the experts. If their answer doesn’t help, ask someone else. And someone else. And someone else, until you get the help your kid needs. This parenting thing is so different and so much harder than I thought it would be, but I hope and pray every night that when my daughters grow up, they’ll know that their mom did everything she could. Some days it might not be enough, but I’m doing my best.