It was only 4 weeks after my son was born that he started screaming. Even as a newborn he hardly slept for more than 10 minutes at a time and unless I kept him tucked in bed with me ( err…I always said I’d never co-sleep ) the nights were just as demanding.
With brilliant blue eyes and near white-blonde hair, he was adorable and his looks gave nothing away. So his differences were difficult to distinguish to anyone outside our home.
He didn’t talk much before school so we kinda wondered where he was at until he was nearly 4 and counted down backwards from 100 loud and clear without skipping a number in the bathtub one day. Short while later out came the alphabet and we all stood there stunned as he hadn’t been interested in numbers or letters during playtime, or so we thought.
With his zero-to-sixty temper and fascination with spinning objects and building lego for hours at a time, we knew full well that most everything about him was already different from his peers.
We were looking for a baseline of ‘where does he fit’?
What we also found is that he held a lot in when we were with others and he’d fall apart and rage at home. We were beside ourselves to know what to do.
When he became very ill for 3 weeks off and on, and for fear of dehydration, we were admitted to the hospital in a city 1hr 20 mins away. We knew the fight that lay ahead as he detested being touched, but I was able to stay at least and they let me sleep in his room.
He must have sensed my trust in the nurse, I knew her from years before, as she became the ONLY nurse he would lay down for and let examine him. I watched in awe as he carefully laid on his back and pulled up his pajama shirt so she could check his abdomen and listen to his heart.
She helped us find the strength to get through our first 2 days in the hospital. These moments are crucial to remember and revisit as they provide an anchor of gratitude amidst the chaos. When you look back, you can see moments when you were given exactly what you needed at the time you needed it, because the rest of it all is a tangled mess usually.
The arrival of the doctor turned my son into a raging, caged animal. A different nurse altogether accompanied the physician and along with my husband and I, we four could not hold him down to be examined.
The doctor became frustrated because he got kicked, the nurse pulled away, Elliott retreated and climbed into my husbands arms and I stood paralyzed.
The words I heard next were piercing and hurt even to write them down.
” Your son is severely autistic and needs to be on anti-psychotics. I want to see you in my office in 2 weeks.”
My knees gave out and I collapsed on the bed behind me. A flood of tears overwhelmed me and I could barely speak or respond.
This was only the beginning of many years finding a doctor that “fit” us and really nailing down what exactly we were dealing with. Our diagnosis seemed long and complicated at first, especially because what we were experiencing and the behaviors that our son was presenting didn’t seem to fall into the typical list of autism either.
We stumbled together, my husband and I through trial and error as to “What the heck do we do with this kid?”
Not only did he stump us, he stumped professionals as well. They kept asking me “So what works for him?” And I’m thinking ‘well, that’s why I came to see you.’
For nearly a decade it felt like forward 1 step, then 2 back. Then forward 3 and back 6.
We fought for answers, solutions, and tried quick-fixes (you already know that these don’t work, but we try them anyway because we are so desperate for something, ANYTHING to relieve the pain in us and our child).
Somedays I gave up. Somedays I cried off and on all day with the windows covered and the doors locked, only able to tend to basic needs of my family. Even that was draining.
It was like breakthrough on the other side of this grand canyon and I had no ounce of gumption left in me. Far off in a distance with no way to access it, was what I needed to get through this.
The crazy part is I didn’t really know what “IT” was exactly.
“What” was going to work? I guess I couldn’t see that part. I just knew it was out there.
So I set out to find whatever it was I was looking for.
“Breakthrough is in the making…pressing onward we find the gift.” Cynthia Fehr
How do you press onward when everything is pushing even harder back at you? What is the next step?
Let me help you…
Start here with My Top 7 Essentials to a Smooth Routine to regain sanity on the tough days.