If there is one thing you can count on while raising a Complex ADHDer it’s questioning yourself. There’s a constant flow of wonder in the day to day. Am I doing enough? Am I doing too much? Are these meds really working? Is my child thriving? Are we turning a corner? Is this normal? The wondering can seem perpetual. And since we really do spend a lot of time scratching our heads it’s easy to forget that nobody knows our kid like we do. There may be a LOT of misunderstanding and mislabeling of behaviors and meds and a million other things on our part, but at heart we KNOW our kid.
Recently a mom made a comment in an ADHD support group describing horrible nightmares her child was having for the first time ever. Coincidentally, her child had just begun taking a new ADHD med. Instinctively, she saw the correlation and wondered if any other families had had this experience. She was desperate for information since her doctor had already said this was not a side effect and she should continue giving the meds. Easy to say as they aren’t soothing a horrified child in the middle of the night or dealing with an exhausted child all day.
At the start of this school year our doctor, who is a brilliant and compassionate person, suggested a med change. Well, I know better than this. The start of the school year is the worst timing and my son does not respond typically to most ADHD meds to begin with. He has a looooong history of atypical reactions that leave doctors speechless. Despite knowing this, I entertained the doctor’s suggestion. He knows my son’s history very well, as I’ve detailed the outcome of every med try over a twelve year period. His was an effort to merely streamline a 4x a day dosage to just a once a day since the school year was starting. He pointed out that it was the very same drug molecule my son was already taking – just a different formulation. ‘He IS the doctor,’ I reminded myself as I pushed my apprehension aside.
I trusted his suggestion negating the sure feeling in my gut. Within just a couple of days extreme anger started bubbling over in my teen. Then it became coupled with panic. Just over a week in my son was coming unglued to the point where we thought we may have to call the police. It’s one thing to contain an elementary school kid, but an uncontrollable 150 pound man-boy is another story. I immediately stopped the med. The doctor was perplexed because this reaction shouldn’t happen. He introduced a new med which immediately set off depression. I noticed it right away, before my son even came to me to say he was “feeling heavy.” I stopped giving it without even asking. I’ve had to dig my son out of the pit of depression before and I wasn’t going to even allow the possibility of it happening again.
When we had an emergency meeting with our doctor just days later, I could tell he didn’t fully believe that the meds had set off these reactions. I could see the doubt in his eyes as he suggested our son possibly had anger issues. The fact that this was a first time behavior – one that was very extreme and completely out of our son’s character – coinciding with starting a new med was not at the top of his plausible answer list.
I told him I could see his wheels turning and could tell he was doubting what I KNEW to be true. I reminded him he was perhaps the best doctor we’d ever had and his compassion and care was genuine and very appreciated by our family. I also reminded that not everything there is to know about meds is on the side of a package or in a book. The people taking these meds ARE REAL PEOPLE who have infinite chemical combinations that may defy what a scientist constructs as a list of possible side effects. I told him he would have to trust ME in this situation and believe that my child became a completely different person in a matter of days after starting a med. I’ve been by this child’s side since he drew breath and I’m more than sure I know what he’s capable of. He listened to me and said he trusted me and we moved on to a new plan that I was comfortable with given my son’s history.
A year ago I would’ve still doubted myself. Five years ago I would’ve looked to the doctor to explain what I saw with my own eyes because surely I couldn’t understand it myself. Ten years ago I would’ve continued giving the med a try since I was told it wasn’t a side effect.
I’m really disappointed in myself for not believing and trusting my instincts from the start. I’m sad that ADHD and anxiety and depression and all the other possible combos make me so confused sometimes that I question what I know to be true about my kid. I’m disheartened that the absolute best doctor we’ve ever had clung too long to a printed side effect list as an explanation instead of putting my experience with my child first.
One thing Norrine and I have learned on our parenting journeys is that finding a compassionate, brilliant doctor makes all the difference. You may go through ten of them to find the one – but the search is worth it – it does make all the difference. But even with the absolute best docs, never stop listening to your gut. Pay close attention to what it’s telling you. Stand firm in making your case as you work with your doctor – if they’re good enough they WILL listen and give credit to your instincts. Remember that nobody knows the nuances of your child more than you, so you’re more than worth listening to.
This journey isn’t easy but you were chosen for your child. Nobody will know and love them better than you will. You can do this. We’re cheering you on.