Is he refusing to eat because of his sensory issues or the Sjogrens symptoms?
Can he tell me how his body feels?
His hands hurt, but do they hurt like the pain he experiences when he has to walk on grass, or does it hurt more internally, like nerve pain?
Is there a way I can ask the question so that he will respond to me?
The thing about having all kinds of auto-immune issues and diagnoses, in addition to an autism spectrum diagnosis, is the strange mix of symptoms vs. limitations in communication.
And no one is more bothered by it than my son.
After several doctor’s visits with disappointing and downright rude results, we were fortunate enough to make our way to the pediatric rheumatology department at UCLA’s Mattel Children’s Hospital.
They have literally changed our lives.
They pay attention. They respect him and his needs. They respect me, and even consider me a resource.
I am amazed at the difference one good doctor can make.
And so every three months, we drive a few hours, stay (and pay) for a night in a hotel, wake early and out of routine, to be seen by the only doctor I have found that will help my child.
It’s worth it, but it isn’t easy.
The planning alone makes my head hurt.
Who will watch his little brother all day, while my husband works and we do freeways, hospital hallways, and more freeways?
What should I pack in case we can’t find anything for breakfast?
Don’t forget to bring the morning meds. and the juice we use to mix them in.
Headphones – check.
iPad – check.
Extra headphones – check.
Where did I put the insurance letter describing coverage and requirements for pre-authorization?
What am I going to wear? (because you know, I may be a momma, but I am still a girl)
After a two hour drive, we settle into the hotel room. Inevitably, the change in routine starts to cause stress for my guy. We walk the hotel halls, looking at the coffee and tea station, the art on the walls, the exercise room, the pool. He familiarizes himself with the entire hotel, so that he can feel comfortable and safe in the room itself.
At bedtime, we curl up and he shows me videos about computer builds until my eyes are blurry. His voice is elevated and tense – like he is trying to convince himself that it’s not different at all.
Although I feel bad about his anxiety, I also am grateful for the time alone with him. A chance to just focus on him, be with him, remember how sweet it is when he curls up with me. I take a deep breath and try and focus on the precious moments as they unfold.
Neither of us sleep.
A Day In The Life – My Son’s Hospital Visit
Morning brings purpose. How will I convince him to leave the room and actually go to the hospital? He is dreading it, and the dread has already caused one meltdown.
As long as I agree to let him dye his hair with henna (he is obsessed with the chemistry behind it – not the actual change in hair color), he agrees to get up and get out the door. Success! We are in good shape heading into the office.
He is smiling and telling me stories. I am smiling and feeling confident.
Then we sit down in the waiting room.
There are babies crying and nurses talking and a pharmaceutical rep. banging her heavy bag against the wall.
He begins to rock back and forth, trying to cope with the noise that is still present, even with his headphones.
I rub his back and try and help him calm down.
In just a few minutes, they call our name and we are in our own room. I let out the breath I had unknowingly been holding in.
A few hours later, and we are all finished up.
The doctor did not have great news, so I am struggling to blink back tears and seem cheerful.
My son, on the other hand, is thrilled that it is over.
There is a farmers market across the street. We wander, find some delicious tamales for lunch, look at all the flowers, and prepare for the drive home.
We negotiate a stop to pick up the henna, and I lament the loss of his sweet, blond locks.
It’s an unusual day in our life, but a day in our life just the same.
And we made it.
With a ton of help from friends who babysat and texted prayers and brought us dinner when we returned home, from the gal in the lobby who made me freshly ground coffee when it was obvious that I needed it, from the nurse who let him put the blood pressure cuff on himself to lessen the fear of being squeezed too hard, from the man who makes great computer build videos on You Tube.
With help, we made it through.
And just like any other day in our life, there is a blend of the good and the bad, the messy and the beautiful, the mundane and the sacred.