This morning we began our self-imposed Shelter in Place. We plan to leave the house only if absolutely necessary (just to clarify, car rides for Josiah are absolutely necessary…today we took 2 of them) and to limit contact to immediate family members currently living inside our home. To keep Josiah as healthy as possible, it is the right choice for our family.
That means none of Josiah’s caregivers are working with him.
Rick and I are flying solo. Or would that be duo?
In November, it will be exactly 2 years Josiah has been wearing a helmet for self-protection. TWO YEARS!
We were given a padded helmet at Texas Children’s Hospital September, 2017 and assured Josiah’s raging outbursts were not a result of constipation but most likely related to a teenager with Autism who needs additional psychiatric medication.
At the time I shuddered to imagine my son in such distress he needed protection from himself. I couldn’t envision a life in which he would need a helmet for difficult moments.
Little did I realize then, Josiah would need to wear it most all the time, not just during difficult moments. Little did I realize then, the helmet they provided at the hospital wouldn’t suffice. Josiah would need something sturdier. He would need something to cover his ears. He would need something to shield his face and his eyes. Little did I realize then, Josiah would be wearing a helmet for a very long time.
He even sleeps in it.
It’s been a rough and difficult summer. For reasons still unknown, though I have very strong suspicions, Josiah spent much of these past few months screaming. Screaming may not be the best adjective but ‘crying’ just doesn’t seem to adequately describe the painful noises we all became accustomed to most every day.
He was in the hospital 3 times and sent home 3 times with no answers, no great insight, no helpful protocol to alleviate whatever it was causing him to shriek. I truly believe he was such a difficult patient it was easier to tell us, “Take him home where he will be more comfortable and see if that helps.”
It didn’t. I knew it wouldn’t.
I started this blog 8 years ago, encouraged by a friend to share our journey. I was hesitant at first. Life at our house isn’t pretty. It’s often chaotic, confusing and challenging. It’s loud and smelly and all consuming.
Why share that with the world?
Once I started writing, I couldn’t stop. Writing it all down as it unfolded became my way of escape. If I wrote about it, I could release it. Capturing all the heartache and struggle; embracing it for what it is, then letting it go became my therapy.
It’s taken me all these years to realize however, NONE of this is about me!
Some days are character building days.
We seem to have quite a few of them around here. I’m not my best on days like these. Maybe that’s why they happen so frequently. Maybe I just need more opportunities to do better, to let it all go.
I think if you were here, watching, you might assume it’s going rather well. From the outside, (at least I hope), it appears I have it all pulled together. In the moments when things aren’t going well I jump into action with a quiet resolve to do whatever is required. I’m determined and focused and self assured..