One of the hardest things I have found through this journey, is watching one of our children in pain while feeling helpless to figure out how to help.
Luca woke up last night after being asleep for about an hour - screaming in pain, and it wasn’t until after five or six very long minutes of our trying to get him to tell us what was wrong, trying to give him words like “it hurts” or “owie” to differentiate if he woke up with a nightmare or if he was in excruciating pain; showing him his “what hurts picture chart”, begging he show us what hurts, to simply work to calm him down enough that his actions began to focus on his ear, tugging and pulling and screaming as he refused to let me let him go.
Luca was so upset but refused to take pain medication, so we did what tends to happen when the twins are in that much pain- a Tylenol suppository- which is equally awful for both the child receiving it and the parent providing it.
After about ten minutes, the medicine kicked in and his shrieks became cries, that began to subside to whimpers. We held him as long as he needed until he was ready to go back to bed, truly exhausted but still in steady pain.
Thinking our boy would finally be ready to rest, we went back to bed, only to hear his level 10 pain screams again. We took him from his room so he would not wake his brother and walked him around the kitchen, holding him close and trying to comfort him while we checked with our doctor. After being advised to try Motrin- which inconveniently does not come in a suppository, we had to hold him tight and work to get him to take the Motrin (majority of which he spit all over us).
This is when his fight/flight mentality kicked in, and he ran for the basement door to leave the house. After trying to distract him in numerous ways, and calm him down so that he wouldn’t wake his siblings, I decided to put him in the car and drive towards the ER in case he couldn’t calm down. I grabbed warm clothes, socks and shoes, and both our jackets, and we headed out the door.
Two minutes in the car he was at peace- still holding his ear, but the movement and being strapped in tightly in his car seat, upright where the pressure would subside.
Great, I thought, some peace for the poor kid. But then, as I was driving with instrumental pop on Spotify to sooth him, I realized that it was nearly 10:30pm at night… and I was tired. I don’t mean the kind of tired where you’re annoyed to still be up… I mean the kind of tired that was dangerous to be driving. So I text my wife and said I was going to bring him back. He was content after all, right?
The moment we got back to the house and I brought him upstairs, hoping we could cuddle together to a movie until he passed out, he started screaming again. Loudly! I tried bringing him to my bed, where he refused to stay, clearly determined to wake the whole house up. I ended up snapping at my wife when she asked why I didn’t just bring him to the ER like we planned- because she was saying it from her position tucked in bed where she’d been sleeping while I had worried about driving off the road with our son in the back of the car.
When Luca tried to escape again, still screaming, I realized we very well may need to be in the ER all night. So I grabbed our things again, put him back in the car, and headed to the hospital. About 15 minutes into the drive, he began to fall asleep. I thought about the ER during flu season, and how many joked the hospital I was headed to was where people went to die. I thought about the hospital bill that would come from a potentially long evening with a screaming autistic child where I could be told there was nothing they could do, while exposing Luca to something much worse. So I decided to take a left and head home instead of continuing on to the destination. I got home and it was just before midnight, but this time Luca was so exhausted he let me cuddle him in the guest room until he passed out.
I crawled back into my bed after midnight, drifted off to sleep, and felt a jolt a few hours later when Jack crawled into bed with us at 4:30am. Oh the #sleeplessnights of parenting children with autism. You’ll hear so much in regards to the lack of sleep I’ve gotten since pregnant with the twins, which will better support the fact that the one blessing in disguise last night was that Jack actually slept through the night so that I wasn’t juggling two sleepless toddlers. There truly is always something to be grateful for if you can keep the right perspective.
I brought Luca in to the doctor today expecting without a doubt in my mind that he would have a nasty ear infection. But after a quick examination from the best doctor I know, she declared his #eartubes were in tact and clear, there was a little drainage, but otherwise, he would persevere. The direction was to try Flonase and continue with the tylenol/motrin. Although I did not get the diagnosis that would give him a shot of antibiotics and magically cure everything for him, I did watch Luca get on the scale by himself, and then ask the nurse to check his height but standing under the measuring tape anxiously looking up at her; I listed to him say hello to the doctor, and let her listen to his heart beat without fuss; and I watched him proudly grab my hand when it was time to leave and say “see you soon.” All important moments that didn’t happen at our last visit less than 3 months ago.
And yet, I sit here as I type this, and I anxiously await the day that Luca can say to me, “Mommy, my ear really hurts”, or “yes, the medicine helped”, or even, “I’m so sad”. I know for so many parents of amazing nonverbal children, they’ve navigated the other opportunities for communicating with their children beautifully, and this is an area in which I should find patience and excitement for those days, versus the anxious frustration I feel in the moments when I cannot help my son. But I am human, and I am forever grateful to have a partner in this #parentship (parent partnership), so that I do not have to navigate it alone.