There will be a segment on ABC’s 20/20 this Friday featuring families of special needs children and how medical marijuana has been used as a form of treatment for various conditions. These conditions, ranging from ADD to autism to PANDAS, usually have treatment options that use harmful medications that many time may harm a child.
I recently have been very vocal about budget cuts at the regional center. Because any day now Joey could loose health care, any day now I could loose respite for Joey and I don’t hear anyone speaking out. I know I am not the only parent effected, I know these organizations know this as well. Why do you think there are so many of these parents coming to these organizations saying we need help. It really makes me angry because God forbid my foundation makes enough money, I don’t want it. I would rather give it to the regional center so it can continue to help children. My foundation is not to fund me and my family. It is to fund those families that need help, need resources and they don’t need to go through a bunch of red tape. One weekend without having our respite person here at the agency that comes into our home to give us 6 hours of rest once a week, that person is so important to our life. That is the one day that I can go grocery shopping. For at least our state to remove any money from the regional center to me, people should be speaking a little bit louder.
I sat in the doctor’s office and when I realized that Joey was not a candidate for a feeding tube because of the severity of his autism. I realized that he was 46 pounds…that day was, that was a long day for me. I could not understand how a doctor could walk into a room and tell me that my son was under weight, obviously, he was okay with the medication that he was on and tell me that he was not a candidate for a feeding tube, giving Joey (autistic child) more medication would make his condition worse. Well, that’s great…give me no answers and walk out and see another patient. Unbelievable. If you could have seen the fear in my eyes…I get a blow from the diagnosis of autism. And now, I am getting another blow to my gut for the medications associated with autism?? So matter what, my son is going to die? Or no matter what, his life is a waste and you are going to see your next patient?? Do we need to remind the doctors of the oath that they took when they become doctors? You see so many patients that you forget what it is like to be a parent, to be a mom, to be compassionate.
eople are calling me and I have family’s contacting me, I have doctor’s contacting me, I have educator’s contacting me asking me not only how can I help but what did you do? Where did you find the research and how did you find the reseach? I have to direct them back to Joey. Not only is he the research but he is the cause. Every fight, everything I have ever done since he was born has led me up to this point. He is the reason. NO one should be thanking me anymore, they should be thanking Joey. He has pulled everything out of me, everything that I need to continue to lead. He is the reason I know who I am now and I know what I am here for. I don’t think that I have ever looked at autism as a bad thing. I don’t think I have ever looked at Joey and thought he is going to hold me back. Between autism and Joey (they) have made me a very strong person. Strong enough to pull other parents out of their desperate state. To lead the pack and let them know, I was were you were and I made it. If you can’t make it, I will grab your hand and take you with me. I owe it to Joey. I am a better parent. I have a healthy child now and I have a child that is here.
Dr. Bernard Rimland, he is the founder of the Autism Society of America. I have read many books and have been a fan of his since Joey was diagnosed with autism. The day I came home and typed in autism and marijuana and his research came up. I was up all night. I was up until 5 o’clock in the morning. I could not believe that the doctor that I had admired, the doctor that I had researched and the doctor had felt if there is a protocol for autism…this guy is on it. To find that he had written the initial medical review and research on this (autism and marijuana) blew my mind. I am still struggling with why a few organizations have not stepped up to the plate and said she’s right. We should be honoring this man.
I was 25 and my first child was okay and I was just coming out of a not so good relationship with their father. The diagnosis actually made me stronger. Looking back, that diagnosis .autism made me a better parent but it made me who I am today. It made me a very strong woman. You have to have thick skin in order to navigate through this factor. I moved back home and I said, you know this is the county I know, I am going to move back home and whatever I need to do, I will do it here. I had no idea about the regional center and did my own research and always wanted to place Joey on a bio med protocol and was very interested and I always thought that was the best way to treat autism after doing my research and placing him on the gluton free casion (SP) diet and that wasn’t successful. Joey started displaying a lot of behaviors in school at the age of five. A teacher had recommended medication or to see a doctor.
Medications work for some children and then there is medications that are not effect in some children. In this case, in our case the medications were ineffective with Joey. I know Joey is not the only child because I receive the emails, the phone calls and people tracking me down…and I am shopping, mothers come up to me and say thank you. They don’t want anyone else in the store to know what they are talking about. I had a mother come up to me and say thank you. And my daughter said, why did she say thank you. Because of the stigma of marijuana she couldn’t discuss it with me. That is the reason why I am moving forward. That stigma could save another child’s life. That parent could not ask me any questions for fear of over hearing.
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
Mieko Hester-Perez may have an unconventional foundation, but her fundraiser was anything but. A first class event, from the red carpet to the guest list, the Aqua Lounge in Beverly Hills was the perfect place for the Unconventional Foundation For Autism to hold their first event – and what an event it was!