Lack of Resources for parents with Autistic Kids
Mieko Hester Perez – Her Story (transcript)
One day I was working at an attorney service and I had to choose between taking Joey to the doctor or going to work. We needed to get Joey into the regional center, so we could get some resources for him. My boss, who was single, I was younger than her….she had no concept of what a single mother goes through or had no concept of a mother who has special needs children. She was horrible…she was horrible.
That day, one of my old clients called me and said, Mieko you are the only person who can call up the Secretary of State and get whatever you want. We need 50 good standings and you are the only person who can do it.
I said, 50??
Do you know how much that is? And he said, yeah…and we really need you.
I walked back into my job, got my purse, left and never returned. That was the first day of CA Corporate and Attorney services. From that day on, every client, my biggest client that has ever come to my business, (I have told them) that you are paying for Joey’s nanny, Joey’s resources. They needed to know that. I never shied away from my story, I never hid from (the fact) that I am a single mom and I have two children (one with autism). I am going to do the best work that you have ever seen. You can call me twenty four hours a day because I can guarantee you I am awake. Those are the good times. But in between those times, my health was compromised, feeling like I am neglecting my daughter and going to so many appointments and wearing myself thin. Trying to figure out how to navigate school districts who don’t want to give your son what he needs, as well as, the ups and downs of medications.
He was five years old and here we are five years later.
(With) the diagnosis of anorexia and malnutrition (for her autistic son, Joey). When it comes to the emotional aspect of it, the educational aspect of it and learning how to navigate through resources and learning how to grab the bull by the horns, I have never once had time to think about my son’s diagnosis. Never. If I did have time, that would mean that I have way too much time. The only thing I could do was move. Action…that’s it.
There were times that I would cry myself to sleep and ask God, why?
As time progressed I didn’t know where I was going to go with this (autism) but here I am and Joey’s here, now. I have so many parents, so many mothers, so many people looking at my situation. I have the same situation. My advice to them is to keep going, because I did. Keep going knowing…. (that) I know your situation and I am here for you. Even yesterday, I received a call from Wisconsin. Jackie Rickerts (sp) is not doing so well. They asked me to come back and speak on behalf of patients and these patients that just need for me to talk to them. I said, Okay. I can’t deny a parent or a mother of something that I was yearning for all those years I needed help and I had the door slammed in my face. To me that’s not fair, so I am here to lend my service to them, personally. Maybe this autism factor has gotten too commercial and maybe they are forgetting what it is like to be home with our (autistic) children.