I get it. People mean well. They are trying to be sympathetic and make us all feel better. Anxiety disorder and panic disorder are big, scary, frightening ideas. Nobody wants to know that somebody they know is struggling with something like anxiety and panic, especially not when that somebody is a child. So out of a desire to make everybody feel better, people have been known to say some less than helpful/comforting/correct things…things I would prefer to never have to hear again, but know I will be addressing time and again.
“He looks fine.” – What is fine? Have you seen him smile, because we haven’t recently. At least not the genuine sort of smile that can light up his face. Anxiety is a stealer of joy. It has stolen our son’s joy and the smile that accompanies joy. He’s not fine. What you may see is him managing to make it through the day, and there is nothing “fine” about that.
“All kids have anxiety.” – True. However most kids do not experience anxiety to a degree that is a diagnosable mental health condition. Some amount of anxiety is normal. But anxiety that’s too strong or happens too much can become overwhelming. It can interfere with a person’s ability to get things done and, in severe cases, can start taking over the good and enjoyable parts of life. My son falls into the severe category.
“I’ve never seen him have a panic attack.” – Just because you haven’t seen it, doesn’t mean it does not exist. He has them. They are real, and they are frightening, and they are sometimes debilitating. The panic attacks are a physical manifestation of his extreme anxiety.
“There must be something causing his attacks.” – Sure. Living life as a 10 year old boy struggling with an anxiety disorder – that is what is causing his panic attacks. By definition, a panic disorder is a psychiatric disorder in which debilitating anxiety and fear arise frequently and without reasonable cause. So, no. No we can’t just remove the “thing” that is causing his panic attacks. If we could we would.
“It’s a phase. He’ll grow out of it.” – All kids go through phases and they may even include some level of anxiety or uneasiness. There is no question, that anxiety is a normal part of childhood and adolescence. However, having an anxiety disorder and a panic disorder is not a phase. There is hope that with medication, treatment and time our son will learn how to successfully manage his symptoms, but this is likely something he will struggle with to some degree for his entire life. It’s not a phase…
These are the lessons I have learned since deciding rip off the bandaid to share both my son’s diagnoses, and our family’s journey, with the world.
- A “label” isn’t always a bad thing – We spent a long time not wanting to “label” our son, and therefore were not straightforward with him, ourselves or others. This came from a place of trying to protect him from the big, bad world, but in the end actually made him (and us) more vulnerable. The day we sat him down and for the first time had a conversation that included the words autism spectrum disorder, anxiety disorder, panic attacks, and medication, was actually a good day. We gave our son the words to begin to understand and talk about what he is struggling through. There is both both knowledge and comfort in the labels.
- We are not alone – In the first minutes of linking this blog to my Facebook page, I received private messages from 6 different people talking about their own, or their child’s, experiences with anxiety, panic, depression, sensory processing, and autism spectrum disorders. Within minutes I went from feeling like my world was very small, to realizing that my world was big, and wide, and there are loving arms to hold us up when the burden seems too great. There have also been people who my son admires deeply, who have come to me with their own stories of struggle. Being able to share those stories with my son, along with the knowledge that these are adults who both care about him and can understand what he is experiencing has made parts of his world a little less frightening.
- Being honest, doesn’t guarantee universal understanding – Most people have been amazing, supportive, and understanding. Most, but not all. I have come across skeptics and naysayers. These are the people who even after hearing the diagnoses, still say “but he seems fine,” or “are you sure?”, or “he’s just going through a phase.” No, no, and NO! I am thankful that the amazing, supportive, and understanding people far outnumber the skeptics and naysayers.
Ripping off that band aid was hard. But we did it. It stung a little, but mostly there has been fresh air. And there is so much healing to be found on the other side.
That memory popped up in my personal Facebook feed this morning…
The therapist I referred to in this post a year ago was the brilliant speech language pathologist, who spent the next 9 months doing amazing work to close Owen’s expressive language deficit. She’s also the one who referred us to our current psychologist, who in turn referred us the psychiatrist that finally gave us a solid diagnosis yesterday. So apparently that celebratory treat was truly a celebration of the first step down the right path.
Last Thursday, we were here. And we were scared and lost and looking for even a glimmer of hope.
Today, my husband and I were back at the psychiatrist’s office to discuss his thoughts on diagnosis and treatment. We didn’t actually find out anything we hadn’t already been told or suspected. His diagnosis was confirmation of autism spectrum disorder level 1 and generalized anxiety disorder. He also added the “sub” diagnosis of panic disorder, said he will also be evaluating for depression as we move forward and pointed out that all of the above is exacerbated by our son’s high intellect.
So we have a confirmed diagnosis, we have a treatment plan, and we have a treatment team who we FINALLY feel understand exactly what our son and our family struggle through. We have hope.
We have hope, and we have a prescription for prozac. We have hope and we have the words to explain to our son what is happening inside his brain and body.
As I was waiting at the pharmacy for the prescription, I was texting with somebody who had asked me to let him know the outcome of the appointment. In one of those texts I said that I felt like I had finally exhaled for the fist time in weeks. There is great relief in being able to name what he is experiencing.
So I’ve exhaled. My husband and I have hugged each other tight. Tonight we’ll give our son the words to name his struggles and tomorrow we’ll open the bottle of Prozac.