Getting Used to Being OK

Written from personal experience….

As a parent of a child with complex issues like Autism, PANS, or PANDAS, daily life is chaotic, crisis mode, draining, exhausting, and lonely. You’re often in fight or flight mode all the time.

But what happens when your child begins to have small but significant improvements? They start babbling as a first step to speech. Or, they come right out and say a word!

Maybe they begin to make eye contact now, or they can follow instructions suddenly.

Some children start expressing their preferences, they start doing tasks for themselves, or engaging with a sibling.

Daily, my Autism-Centered Homeopathic practice is filled with delightful updates from parents about their child improving in speech, awareness, and cognition.

So, why write a blog on getting used to being ok?

If you’ve lived in crisis mode for years, and you begin to have a moment or two of the dust settling, it can be extremely unnerving and even frightening for parents. When all you know is fight or flight, and suddenly you have a moment of hope, it can take everything in your power not to panic.

Having a taste of freedom or hope is just a stark reminder of what you have been living. It’s almost better not to know just how bad things have been, and still may be for some time.

This feeling of calm or hope is a stranger to you; things will just go back to how they were, you think. Something bad will happen again, and I can’t trust this new feeling. The feeling of fight or flight is familiar; it’s always been there, and we know it. It’s too scary to move out of and think, “can things be ok, even if just for a moment”?

Often, the swing back to everyday crisis mode is so shocking, grieving, and disappointing to your system that you might just stay in crisis mode anyway, because it’s a protective nervous system response.

What if we allowed ourselves to stay in the moment of hope?

Even though the feeling of hope can be scary and unfamiliar, what if, just for a fraction of time, you sit in it? What is, instead of pushing it away the instant you feel it, you just sit in it with no judgment, no labeling it, no fearing it.

It may be short-lived at first, but over time, as your child improves, these moments become more frequent and closer together. Each time they come, you let it in with no expectations of how long the “good times” will last.

At first, you may feel uncomfortable with this new feeling, but breathe into it. Sit in it. Watch it as an observer.

Give yourself permission to have these moments; you deserve these moments, your child deserves these moments. You don’t have to hold your breath in them; it’s ok to breathe. It’s the beginning of healing for you as well as your child.

And if today all you can do is notice one small moment of “okay,” that is enough. You don’t need to trust it. You don’t need to plan around it. You don’t need to believe it will last.

Just let it be there.