Being a caregiver to a child with autism means being prepared for worse possible scenarios. Just when you think you’ve secured the house of all dangers your child could get into; your child is able to unlock the locks on the front door and let themselves right outside. I’ve learned you need to be 10 steps ahead of your child before they seek out dangerous situations that you’re not prepared for.
One thing we have not prepared for is when our child is in real crisis – a mental health crisis.
Our son is only 5-year-old; who would think a 5-year-old would be recommended to see a psychiatrist? That’s just what our son’s new pediatrician has told us to do this week.
Let me back up a bit. This is a new pediatrician who’s first encounter with our son was just this week for his over-due annual wellness exam. Previously, Joseph saw a wonderful pediatric group with their own developmental pediatrician who gave the official diagnosis of autism.
This same doctor was willing to try medications to help with Joseph’s massive sensory issues and he started him off with a very low dosage of a medication that gave him a calming feeling to be used during occasions when Joseph would become very anxious, specifically, when the lawnmowers would come around at home and school.
Due to a change in my job and insurance, Joseph’s new health insurance is not accepted at the wonderful pediatric group and we had to find a new pediatrician who accepted the new insurance.
Fast forward to this week when we brought Joseph to see the new doctor and Joseph’s reaction was to claw, kick, bang and scream to get out of the exam room. The new doctor asks questions to me about Joseph while I stood with my back against the door inside the exam room to prevent Joseph from opening it and running out.
Over the loud bangs and screams, I did my best to tell his new doctor everything, all the while waiting for him tell us he’d send a prescription of medication for Joseph to help with his anxiety. Only…he didn’t. Instead, he sent us home with nothing but a list of psychiatrists to call.
We left the office deflated, but hopeful that we’d soon have an appointment for Joseph to see a psychiatrist who would be able to give Joseph some medicine for his nerves.
Boy we were naïve.
Not one psychiatrist was willing to see him. They all repeated the same thing, “We’re sorry, we don’t have experience with autism. Have you tried Kennedy Krieger?”
Yes, Kennedy Krieger, The Center for Autism and Related Disorders in Baltimore, MD, the place that has a 12-18 month waiting list just to be seen!
We know this because we were on the waiting list for nearly a year when Joseph was 2 years old and we finally lost hope for them to call us with an appointment so we had the school psychologist perform every assessment test she had to see if our son was on the spectrum. The results were “moderate” autism, his developmental pediatrician concurred and told us since we had the “official” diagnoses we would not have to bother with Kennedy Krieger, so we removed Joseph from their waiting list.
We are now back to square one.
Joseph’s anxiety of the lawnmowers is worse than the previous years. It started before spring break at school about a month ago, he must have heard or seen them one day at school and refused to go on the school bus the next day, or even leave the house. This continued for nearly 3 weeks until my husband started driving Joseph to school and picking him up. Still, he’s not functioning well in school, he’s on high alert for the lawnmowers and his teachers have to bring him in the separate sensory room to help him cope.
Over Mother’s Day weekend, things got worse. The lawnmowers that come around our development can be here for up to 3 hours. Joseph would be screaming and nearly vomiting for the whole time. On Mother’s Day, he refused to leave his bedroom. He curled up with the table-top fan on his dresser, put on his noise-reducing headphones and cranked up the volume on his tablet and stayed in that position for hours.
He no longer came out of his room. Or talked.
He’s still doing this.
Within 4 days, his dresser broke from the continuous rocking back and forth that Joseph did while standing next to the fan.
His safe area was no more. He panicked. We had to act quickly!
We had to find a new spot, a new “nest”. We set one up in our bedroom so he’d have the windowsill to perch on. We added a sound machine that he can crank up too. Our bedroom sounds like it’s pouring.
The smart thing about Joseph is, when the sun starts setting, he takes off his headphones and snaps out of it all. He’s back to himself. He knows the lawnmowers never come at night.
In the morning, he’s right back at the fan, with the headphones and white noise.
We are trying to get Joseph to return to school. I spoke with his teacher on the phone. She said something that sunk so deep in my stomach it made me want to get sick. She said, “I hate to say it, but he’s having a crisis”.
Crisis. That word, it evokes images and fears of emergency rooms, screams, restraints, shots of valium, my child, a zombie.
I call his new pediatrician back before the end of the day on Friday, I tell him, none of the psychiatrists can see Joseph. He starts grilling me, “did you speak to the doctor, or just the receptionist”. I feel myself quickly losing patience and tell him to speak with my husband as I hand the phone to my husband and say, “I’m about to go the F- off on him”. I instead go and visit my son, he’s so content to block out the whole world. I totally get it kid.
My husband tells me that the doctor will have his staff call all the numbers back and see if they can get anywhere.
In the meantime, we are glad our son has a safe space in the house, we’re just worried he will never want to leave it.