The topic of medication is a very controversial one when
caring for a child with neurological challenges. Ask most parents and you'll find that they have
a strong opinion, one way or another: some families would NEVER put their
children on medication while others COULDN’T live without meds. I enter this
topic with a great deal of trepidation because soon after we made the decision
to put Matthew on meds, someone I know wrote me an email begging me to consider
other options, shaming me into feeling like I was a bad parent, taking the easy way out by medicating him.
Jeesh—the things we say to each other sometimes.
In truth, we thought long and hard about medications before
finally turning to them. We tried behavioral intervention, a “sensory rich”
diet of activities, clothing, weighted blankets, arm brushing, pressure on the
skin, a sensory swing, and just about every other option.
But there came a point where it was obvious that Matthew’s
challenges were beyond external supports. He obviously didn’t feel good in his
own body, and we were failing at trying to help him from the outside. So with
careful consultation with a wonderful neuropediatrician at Seattle Children’s
Developmental Center, we launched Matthew into the world of medication, little
by little, to help support him on the inside.
Meds haven’t changed Matthew—they haven’t taken away his
challenges. But we have found several medications that help him feel more at
home in his body. Far from being sedated or “drugged out,” Matthew is actually
more clear and focused with the support of medications. He’s less anxious, more
able to engage and learn, and more willing to practice his communication skills
with us. School days are easier and more focused. He’s learning more.
I am grateful we finally decided to go down this path.
And that’s a lot for me to say, since I’m the parent who
tries every single home remedy before taking my child to the doctor for an
antibiotic. We take food-grade essential oils in capsules when we are sick and
we eat foods to keep our immune system strong. I’m a regular walker and jogger,
I take yoga weekly to manage my stress. I’m not one of those parents who
quickly jumps to medication. Believe me, I do everything to avoid medication
most of the time.
But when you are a person whose body chemistry is totally
out of whack, like Matthew, then I have a hard time saying NO to something that
will help him feel more at home in his body.
Of course one of the risks of medication is that it can work
for a while and then all of a sudden NOT WORK any longer. This is what seemed
to happen for Matthew in late November and early December when his behavior
started going downhill. Nothing changed in his life or in our lives—he was in
the same routines at the same school—the same teacher, the same caregivers, the
same expectations.
But all of a sudden the cocktail of medications that were
working started to NOT WORK any more.
And this is always the risk—when one’s body chemistry is imbalanced,
then there is always a possibility that medication won’t work the same way all
the time. That reality is frustrating and a little scary too.
I don’t really have any life-changing advice about
medication. I do know that we live in a culture that has the reputation of
being quick to medicate its children to avoid dealing with their behavior. But
for families like ours, knee deep in “dealing” with behavior, sometimes our
best intentions and research-based actions aren’t enough. If behavioral
challenges are a form of suffering for our kiddos, and there are medications
that can help our kids feel less dysregulated and more at home in their bodies,
why would we deny them that experience?
All I can say is this: each family and child is unique. As
parents of these very difficult children, we need the opportunity to make the
decision that is best for each of us. For our family, saying YES to medication
for Matthew has been the right decision. I don’t regret it for a second.
If saying NO is the best decision for you and your child,
then that’s clearly what you should do. Please don’t hear this post as an
endorsement for medicating kids who have neurological challenges. It’s just one
mama’s story, shared with honesty and a big dose of humility too.
One last thing we have learned—medication doesn’t (and
cannot) turn a behaviorally challenged child into a little angel. I think
that’s one of the biggest misunderstandings about psychotropic medication. Our
kids still deal with all their challenges. But with a calmer body to start
with, they are more likely to find success (and us too) after all the work and
effort. Medication doesn’t turn our dysregulated boy into a neurotypical kiddo
who is similar to his peers. He’s still a bizarre, unique little person. But
he’s able to be a little more at home in his body, and as a result, we all get
to be a little more at home when we are together too.