In light of World Autism Awareness Day, I wanted to get a closer look into one family’s story — their difficulties in caring for their child, their financial adversity, their moments that make all the pain, the worry, the struggle disappear.
I want you to meet Lucas. He’s 5 years old, and he was diagnosed with autism when he was 2.
Although I haven’t had the pleasure of meeting him in person yet, I’ve only heard wonderful things about this beautiful boy. “He’s got one of those smiles and laughs you fall in love with,” one of his cousins told me.
His intelligence is remarkable, and his ability to learn so quickly is astonishing. Even with the communication barrier and his inability to express how he’s feeling all the time, he’s able to continuously stun the people around him.
I spoke with Lucas’ mother, Marta, and asked her to share a little bit of their story with me:
“When I had Lucas, I wanted to stay home with him for the first year. We started noticing that he wasn’t interacting with us or making eye contact in times we felt he should. That’s when we found out he had autism. We expected what his condition was, but hearing it from the doctor was very shocking and upsetting. Things that we thought were important weren’t so important anymore.
I took the next year off from working, so my husband needed to work extra hard to pay the bills. Then, the debts started getting bigger as the doctor visits increased and our insurance covered less.
We needed to make a decision: Do I stay home with my son or go back to work?
I stayed home with Lucas for 5 years. I would take on hobbies, like selling cakes. I couldn’t call it a job because it costs money to have your own business. If you aren’t doing well financially, it’s even harder. You don’t want to leave him alone, but you need money to help him.”
Caring for a child with autism is not only emotionally tiring, but financially as well.
Treatment for Autism isn’t Cheap
There is no one cause of autism, just as there is no one type of autism. Every diagnosis is different, and that makes it more challenging for families to find information and provide the proper treatment for their loved ones.
Successful treatments are hard to come by; some work, and some don’t. Regardless of the effect, they’re all very costly.
ABA, or Applied Behavior Analysis, is currently the most accessible treatment for autistic children. It is mostly funded by education systems and is readily available in most schools. But what if the child doesn’t like the treatment? Like Lucas. He wasn’t comfortable with it, and his mother wasn’t going to force him to do something he didn’t want to do. However, other treatments weren’t covered by the government or their insurance.
Marta and her family decided to teach themselves how to effectively support Lucas and help improve his development. They follow The Son-Rise Program, giving him love, attention and respect 24/7.
It isn’t just the treatment and the doctor visits that are expensive. Lucas has to be on a special diet, as well. He needs supplements and organic foods, which can be up to three times more expensive than nonorganic food products.
“I’m lucky to have a great family that will help me, too, when they can.”
Every 1 in 55 boys is diagnosed with autism, yet the awareness and sense of urgency to provide lost parents with answers are low.
“We have to find our own answers. It gets really hard sometimes, but that doesn’t matter. I know I have to keep trying because no one else is going to do it for me. I have a choice to make: I can keep crying all the time, or I can do my best to help him.
The most difficult part about having a child with autism is helping people understand him the way my family and I do. Not many people know what autism is. It’s easy to get frustrated and stressed, but when you realize that it’s not about what other people say or think, and you realize it’s about your child, you feel happiness.
I am blessed in the moments that I embrace autism rather than fight it, in the moments I learn from autism. I am blessed in the moments I accept and connect with my son.”
In honor of World Autism Awareness Day and Lucas and the Duque-Loaiza family.
Cecillia Barr is a graduate of the University of Central Florida. She blogs about her extensive knowledge on student loans in order to help others reduce their debt and live financially independent lives.