Sunday, January 29, 2017

To medicate or not to medicate: that is the question.

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.

Sunday, January 8, 2017

You Can Do This Hard Thing

It has been a very challenging season at our house lately with Matthew’s very difficult behavior. It seems like December is always a hard month, for reasons probably having to do with parenting an active boy who loves the outside, which is hard to do in the Pacific Northwest in the winter.

But I also think that the routine of school, the pressures on our boy, and the sensory overload of Christmas with its lights, decorations and presents culminate into a rather challenging time of year.

This year Matthew is struggling.

Well, to be honest, that is a nice way of putting it: this December Matthew literally exploded.

I have commented to some friends lately that the hard thing about parenting our boy isn't that he's delayed or has learning challenges or can't talk or needs help feeding himself or is still wearing pull-ups, or any of that. The thing that is most challenging right now is that his behavior quickly disintegrates into full on dysregulated tantrums with the flip of a switch. He goes crazy, lashing out, throwing things, trying to bite and hit… Like a crazy, wild animal who doesn't know what to do with his dysregulated body.

I have decided that rather than hide away in my own little house, trying to pretend like everything is fine, it's probably time that I start writing some blog posts about this experience. If nothing else, maybe other parents out there will read the posts and realize that they're not alone in the journey of parenting a dysregulated child. It is so, so hard and not something I would wish on anyone, but it's our story right now, so I'm trying my best to live into it.

Parenting hard kids from hard places is the experience that many international adoptive families have. I must admit, my husband and I were hoping for a different story: a kiddo who needed some medical support and a little extra support developmentally, but who quickly caught up and was able to experience a typical childhood with learning, friends, and regular growth. This, unfortunately, is not our story.

I have spent weeks and months feeling a conflicted mesh of emotions about all this: bitterness towards other families whose adoptive kids are doing well, anger at God or the universe for landing us with this child, exhaustion at the amount of energy it takes to parent Matthew and do it well… but in the end I am trying to choose gratitude: gratitude for the ways that Matthew changes us, gratitude that we have the skills and energy to care for him in the ways he needs, and gratitude that we have the privilege of being his family and his advocates in life.

But I do want to say – with honesty – that parenting a child with behavioral issues involves a whole load of grief I wasn’t expecting. It literally consumes us. It takes the life that we thought we were creating and turns it up on end, and gives us a very different life. This doesn't mean that our new life isn't of value… But there is grief and loss involved in letting go of what we thought you were getting ourselves into so we can be open to the life that is actually ours.

I could tell countless stories of how this looks on a day-to-day basis in my own life, but suffice to say it creates a lot of questions, tears, and prayers. It’s life changing and stretching in ways I never imagined.

Over the next few weeks, I hope to share – in little short snippets – some of our experiences with the many aspects of parenting a child with behavioral challenges: these include medication, sleep, timeouts and consequences, structuring one's family life in a new way, and caring for oneself as a parent in very difficult circumstances. 

Since I am surprised when I look at my blogs stats to see how many people read my blog each day (thanks to a couple sites that feed people my way), I want to offer this: if you are at the end of your rope and need some encouragement or a listening ear, please don't hesitate to reach out. I do not have answers or any kind of special wisdom, but I do know how it feels to do this hard work, and I am always glad to sit alongside someone and bear witness to the things that are so very hard. My husband and I go to an adoption conference in our area every year, and one of the most powerful things at that conference is the ability to identify and stand alongside other families who share some of the things we feel. Last year they handed us little signs that read "#metoo," and every time another parent said something that we could relate to, we held up our signs, feeling a little less alone.

One of my favorite singer-songwriters, Carrie Newcomer, has a song that has sustained me through the past few months. My favorite part is the chorus and the bridge that follows:

You can do this hard thing, you can do this hard thing 
It’s not easy I know, but I believe that it’s so 
You can do this hard thing 

Here we stand breathless and pressed in hard times 
Hearts hung like laundry on backyard clothes lines 
Impossible just takes a little more time

I sing it to myself in the shower, in the car, when I’m hiding in the corner of my bedroom sobbing, when I’m taking deep breaths and walking through the rain in my neighborhood.

It reminds me that even when this parenting journey threatens to destroy me, still I can hang in there and make it. We all can. 

“Impossible just takes a little more time.”