Why Having a Benefits Coordinator for Your Child With Autism Is Amazing
A Benefits Coordinator is an amazing person to have on your side when you are trying to deal with your autistic or unruly child. I will explain in detail why that is, but first I have to give some background about my son, Devin Jr.
My son Devin recently went through a very rough time. He slept but 2 to 3 hours per night, which meant that we only slept 2 to 3 hours a night. He was having behavioral problems and throwing temper tantrums. Not normal kid temper tantrums, but horrible fits where he would run into the wall, hit himself in the head, and attack his brothers, mother, and me, his father.
My son is autistic, and not like "a little introverted" autistic. Like really special needs autistic.
Photo: Devin Jr. starts school. He wouldn't get ABA therapy until the age of 10.
We were being given the run around.
It felt like we were going in circles.
Anyone who regularly deals with the government, health insurance companies, and bureaucracy in general knows the feeling like you are working hard, but getting nowhere. It is only through trial and error that you learn what to say, when to say it, and who to say it to. It took us months to get an autistic diagnosis for our son so that we could get just some of the therapy he needed to improve. We started with speech therapy, and were finally able to get occupational therapy. For ABA or Applied Behavioral Analysis we were put on a wait list. There were about 1,000 people in front of us. About every year or so (yes year) we would get a note: You are number 998, 957, 942, 937 (and so on) in line for ABA therapy. It felt like the line was crawling along, because it honestly was!
A Benefits Coordinator feels like someone who is on your side.
Dealing with a child with severe autism feels like flailing around in the dark.
Nothing seems to work, everyone says "no" when you ask for help.
A Benefits Coordinator brings a bright light into the life of your family. Hope.
She makes things happen, and gets your child the help they need.
Why a Benefits Coordinator is Awesome.
and what they do for you.
I can only speak about my experience with a benefits coordinator, Nikki Drake. She was awesome, responsive, happy, and honestly seemed to be happy and enjoy with what she was doing. A lot of people aren't happy with what they are doing, but everyone once in a while you find someone who has found the perfect job for themselves, and it shows.
Nikki was amazing, she made important calls, and knew the ins and outs of dealing with the maze of health care that we had fumbled through for 8 years, trying to get Devin stabilized behaviorally, home ABA therapy, and medication. She already knew the numbers to call, who to talk to, and what to say.
Benefits Coordinators don't just work with autistic kids, they deal with all sorts of all backgrounds and barriers. They frequently deal with children who have emotional problem, but have been seeing more and more children with pervasive developmental disorder and autism.
Yes we medicated him. No we didn't want to.
We didn't see another option.
But it was the best thing for him. Devin's behavior was getting so bad, we were talking about putting him in a home, away from us. No parent wants that.
Here's the thing: Devin has started progressing faster on medication. His concentration has improved. He seems to have slowed down just a tiny bit, instead of constantly looking away from what he was doing. It has improved his concentration.
Here is the kicker: He sleeps at night, like 6 to 9 hours. That means we sleep too.
My wife and I's relationship has improved. Before we felt like we were caretakers of these children, now it is closer to a normalish family with one person that needs specialized care.
How did this all come about?
I think our benefits coordinator really facilitated everything here. And our family benefited from her help and expertise. As I said, we were on a wait list for years for ABA therapy. We now have a behavioral analyst coming Monday through Friday for two hours helping Devin.
We have always been told that parents are the best advocate for a child with autism. With Nikki on board, it feels like another real advocate has joined that team.
What if I want a benefits coordinator for my child?
I only know how to get a benefits coordinator through Baycare, which is located in central Florida. If you live elsewhere, you can call your local hospital and ask if they have a benefits coordinator or something like that available.
Baycare has a 24 hour operated phone line: (866) 762-1743