How a doctor’s appointment, a job and the need to go to the bathroom spurred me into finally writing a new blog entry….
This past year had been a roller coaster, and overall we can’t say it’s been a fun ride but we made the best of it. This fall has brought some new changes, things are being added and others are returning to what we know worked in the past. That’s not what this long delayed blog entry is about, even though one of those changes is part of it. This blog came about one recent morning when just Dayna and I were going to see one of her doctors, and I was reminded of the unique situations that we experience raising Dayna that other families may not think about. And that was what autismchallenges.com was supposed to be about, right?
We had scheduled Dayna’s appointment with her neurodevelopmental pediatrician at Children’s National Medical Center months back, which brings me to the first section of this blog entry……finding the right doctor for a child with autism. We are very lucky to have found this particular doctor. He specializes in autism, is well regarded for his knowledge, but more importantly remains very involved even between appointments. He goes by Dr. T, I don’t want to list his full name without permission, but it’s been great knowing that he is there to help. You would think finding autism specialists would be easy, but it’s not. There are not as many as you think there would be. We have been to Kennedy Krieger, University of Maryland and now found our doctor at Children’s in DC. Think about it, in the eighties the prevalence of autism was listed as 1 in 10000, by the mid nighties it was down to 1 in 1000, when Dayna was diagnosed it was 1 in 150, and it’s now listed as 1 in 68 by the CDC. If someone was entering college in 2000 when Dayna was born, and back then noticed the need for doctors who specialized in autism, they would have just then started the 10 to 12 year journey to become a doctor. That means they would have come out of school just a few years ago, and just starting to build experience. As you get further back from 2000, the number of doctors that entered school to specialize in autism diminishes. So the point is, finding an experienced autism specialist is a hard task. And if that means driving to DC or anywhere else, that’s what you do. If it means waiting months for appointments, that’s what you do as well. This particular day we were able to see Dr. T in the Rockville, MD office of Children’s, still over an hour away but much easier than dragging Dayna all the way to DC. This particular day as well, it would just be Dayna and I. It ended up also being the first day of Deb’s new job! And that brings me to section number two……the elusive job that fits.
I’ve written in the past about jobs, work and the challenges of having a child with autism. There are all kinds of factors involved. Flexibility, summers, child care are just a few of the challenges that come up. Over the past dozen plus years we’ve primarily been a single income family. Not always the easiest thing to pull off these days, especially with some of the added costs of having a special needs child. But the challenges in finding the right fit, finding after school care for Dayna, and having the flexibility needed made it almost impossible. This year came with an advantage when Sean entered Kindergarten. That fact in combination of having a full schedule at home of Dayna’s therapists, and with Kiley being old enough to do her own thing, allowed Deb to start looking for the right opportunity. That opportunity came with a job right in town three days a week, and perfect hours. There are many factors that can make a job hard to deal with when you have a child at home that has their own specific needs. When you find that rare opportunity, you grab it. In this case, that sought after job started the same day as one of those sought after doctor’s appointments, but we were fine with that. It would be Dayna and I alone this appointment. That morning I got her dressed, and we headed south towards Rockville. And so starts section three….I gotta go to the bathroom!
We had a great appointment with Dr. T., I was feeling pretty accomplished as we left the office. During the appointment I had promised Dayna a Roy Roger’s lunch, so the first step was to find a Roy’s near Rockville. Turns out there are not as many as you may think, so it was a 15 minute drive to get there. As we are pulling up to the drive thru I realized something…..I really need to go to the bathroom. And here lies the third thing that happened that day that gave me an idea for the blog. What do you do when you’re a father with a fully developed 15 year old girl, who cannot be left alone, and you need to use a rest room? I was still 40+ miles from home. I didn’t feel comfortable asking a stranger to watch her. Even if I did find someone I felt comfortable with she could start to have an outburst the minute I walked away. I definitely didn’t feel comfortable walking her into the bathroom with me. Besides how it would look, at some point I would have had to let go of her for obvious reasons and what if she walked back out the door…or ran? There is always a chance of finding a place with a ‘family bathroom’, but it’s not like you can find those on GPS. By the way, the same thing would have happened in reverse with Dayna. What if she started to have stomach issues and needed to be brought to the bathroom? There are times when she needs assistance…..and a grown man undressing a 15 year old girl in a public bathroom definitely would raise some eyebrows. Fact is, there would be no bathroom trip, so I held it in for the rest of the ride.
So that’s it….doctor’s appointments, job opportunities and having to go to the bathroom. Three normal parts of life that need additional thought when you have a child with autism. And you know what comes out after holding in the need to go to the bathroom for 40 miles? My first blog entry in months.
Thanks for reading!