At first glance you are probably thinking the “A” word I’m referencing is autism. Maybe some other “A” words come to mind too, but while this has a lot to do with autism, it’s not the sole reason I’m writing this piece today. The main reason is another “A” word that like autism, is also a large part of our family’s life, particularly my daughter’s and mine, and that is Anxiety.
Anxiety comes in many different forms. Everyone has experienced a little bit of normal anxiety, whether it be nervousness or worry. It’s when it’s debilitating and causes a person to at times, change the way they would normally live. It could be in the form of social anxiety, phobia, or even panic disorders. It’s not something that seems to be talked about much and if it is talked about, it’s sometimes looked upon as an imaginary disorder or just weakness. Well, I’m here to tell you it’s very real.
I would be remiss if I didn’t mention that a lot of our kids on the spectrum deal with anxiety regularly. I know for our daughter there is a lot of anxiety associated with changes in her routine or schedule, not being able to control certain things, and other aspects of her life. So having a parent that has been diagnosed with anxiety can be no picnic for her. Kids in general have that keen ability to sense when things aren’t right with someone. My daughter is even more attune to feelings and while she doesn’t always know how to react to them, she’s really good at feeding off of my anxiety. She’s great with empathy when someone is hurt or sad, but anxiety just makes her…well anxious.
As many of you know, the last year and a half has been somewhat of a peace journey for me. I’ve managed to learn ways to keep myself calm and find peace when things become difficult (I hope to share some of these in an upcoming post). I keep a pretty positive attitude which is a huge help, but the reality is, sometimes this disorder can take charge and shooting out rays of happy and sunshine all day long just can’t minimize the effects of it. In the words of my friend Forrest Gump, “Sometimes, I guess there just aren’t enough rocks”.
In the last few weeks our daughter has had a bit of a behavior spike. There’s not one thing we can point a finger too, but school wide testing, changes in schedule and routine, constant sinus issues, and lack of sleep have probably all contributed to it. It’s a catch 22 really because her anxiety is partly why I started getting anxious again and then she picks up on my anxiety. It’s a vicious circle. But I don’t want to place all the blame on autism. There are other factors that contribute to anxiety and when things pile on, it rears its ugly head. Autism is just the one daily and consistent struggle that starts to weigh on you.
I’m very conscious of complaining because I realize how great we have it in this life and that there are so many people that have so much more difficult situations. But I’m done minimizing our story, the struggle, or the effect it has on us as a family. It’s no harder or easier than anyone else’s story, it’s just that, our story. It’s all about perspective really. My reality is autism has worn me down recently and after so much time of feeling peaceful and calm, anxiety came crushing down these last few days. There’s no sugar coating. It’s ugly. It’s stressful. It’s debilitating. It’s upsetting. It sucks.
It’s when I had to take that little X pill for the first time in over a year, that I realized that much like autism, anxiety is a disorder that is here to stay. I will constantly have to learn ways to manage it and cope with it. My mind does not have an off switch, at least not one that I can find, but I have to continue to work hard at somehow shutting it down sometimes. I have to learn to live with it, just like I’m learning to live with autism, and not just for me, but for my daughter. Studies have shown that the stress and anxiety that an autism mom faces is at the level of a soldier in combat as you can see by this article here. That must be where the “autism warrior mom” name comes from. All I know is that this is a battle that I will not allow autism or anxiety to win. I will find my peace again.
If you or someone you know deals with anxiety or if you think you might be struggling with it yourself, I hope that you will be open with someone about it and get the help that you need. Own your story no matter what it is. Never minimize it or the struggle. If you are dealing with any of these things in excess, just be mindful of it.
Excessive worry
Sleep problems
Irrational fears
Muscle tension
Chronic indigestion
Excessive stage fright
Self-consciousness
Panic
Flashbacks of traumatic experiences
Perfectionism
Compulsive behaviors
Self-doubt
I’m no expert, so ask your doctor if you’re concerned. Most importantly, if you are a caregiver like me, make time for yourself. Do things that make you happy, make you feel beautiful (as my friend says), and carve out time for your peace. Give in to your truth and find that place where you heart and soul can be still in the struggle.
