"BC Ministry for Children Abandons Boy with Autism"
"BC Ministry for Children Abandons Boy with Autism"
An Open Letter to the British Columbia Minister of Health from Barbara Rodrigues,
Mother of Jeremy
March 16, 1998
Penny Priddy,
Minister of Health,
Rm. 133, Parliament Buildings,
Victoria, B.C. V8V 1X4
Dear Penny Priddy:
My name is Barbara Rodrigues. My son is Jeremy. He is a beautiful little boy with big, brown eyes and an infectious smile. He is also autistic. Jeremy has no useful language, no self-help skills, doesn't dress/undress himself, doesn't feed himself. He has no social skills and doesn't play with toys appropriately.
The current level of government funded programs are inadequate to deal with the many needs of an autistic child. I had been left with a feeling of hopelessness at the scanty interventions that have been offered to my child. But out of that hopelessness, came a need to further investigate treatment and options available to our son. From my research, I found hope for Jeremy. That hope comes in the form of Lovaas-type Applied Behavior Analysis.
There is 30 years of proven medical research that states that this is the best way to treat autistic children. 63 licenced B.C. psychiatrists deem this 'medically necessary treatment.' I have read countless testimonials from parents on the positive effects of this treatment for their autistic children.
So, now seemingly the only thing left to do would be to get a Lovaas-type ABA program going. A lot of work, yes, but we're up to the task. We have hope, we have a scientifically proven program, right?
Poof! Welcome to the real world. Not only is this treatment not covered by medical, there's no program or consultants here in Canada. Every time I try to find out more about the treatment or talk about this program, I am met with either complete ignorance or deliberate arrogance by the professionals. I am told that the F.E.A.T. group are fanatics. In fact, this program was known about here in the Okanagan and kept from me intentionally.
But as I said, I have researched treatments, not just Lovaas-type ABA but all treatment for autism, and know beyond a shadow of a doubt that this will help my child. So I am not deterred by these so-called professionals. At times, I do feel very along and hence out of that feeling came this analogy. I realize your government isn't known for it's empathy but this is how I feel in a way maybe other's can relate.
Analogy
Let me start off by saying that I am using a child with cancer and the treatment of chemotherapy purely as an analogy. I in no way feel that the situations are the same or can be compared. I am not stating that I can compare myself to what the parent of a child diagnosed with cancer must feel or goes through. I am merely using the disease of cancer and the treatment of chemotherapy as a comparison to what it is like to ask for a treatment and have it denied. Thus in this story, cancer-autism, doctors-government/professionals, chemotherapy = Lovaas-type ABA, penicillin-generic programs offered now.
Doctors: Your child has cancer and we are going to set up a treatment of intravenous penicillin for him.
Parents: Well, we were wondering if you had heard of chemotherapy? We hear that they are using it in the States with wonderful results. We heard that they have even cured some children.
Doctors: Umm, yes, we heard about chemotherapy. But those of a cure, well, I think the children were misdiagnosed to begin with. Plus I heard it didn't cure them all.
Parents: Well, yes, we realize it didn't cure them all but we heard it gave all of them more time.
Doctors: Look, here's what we will do for little Johnny, we'll give him intravenous ampicillin. Although, he will have to go on a waiting list for it.
Parents: Isn't that the same thing as penicillin? And no, don't want to wait. We heard that the earlier treatment is started the better. Plus, we would really like to try chemotherapy.
Doctors: Sorry, there's no money for chemotherapy and we have been using penicillin for cancer for long time now.
Parents: But the penicillin doesn't work for cancer. It's fine for other things but not cancer. Please, won't you help your child.
Doctors: No, there's just no money for chemotherapy. This is what we have to offer. Now get little Johnny up on the table and we will put in the IV for penicillin.
Parents: We won't. We are going to try chemotherapy.
Doctors: Okay, fine, don't say we didn't offer you anything though (under their breath). "Fanatics."
I must say that I am very disappointed in the government system. In the three years that we have been involved, I have been let down and disappointed more times than not.
Until this year, I believed that everything that could be done for my son was being done. I naively believed that everyone involved had my child's best interest at heart. The sad reality is that, other than one or two involved, the best interest of Jeremy has never been a consideration.
I have found a real lack of effort or dedication put forth to find out what treatments work best to help my child.
Now, when I am finally asking/demanding treatment for my son - I get the run around or half-baked ideas that are meant to pacify me and are not my initial request. I feel as if I am in a war and all I am asking is "Won't someone help my son?"
I am ill-equipped for this war. I don't have the years of experience behind me as do you Government officials. I am in this for love - thus making me emotional and an easy target for you. I am only one whereas you have many in your chain of command. My only weapons against you are my pen and my voice - seemingly insignificant to you. Let me tell you though. I will not go away, I will not be deterred. For my motto is as follows:
My name is Barbara Rodrigues.
My son is Jeremy.
He cannot speak.
But his voice must be heard.
Barbara Rodrigues
Penticton, BC