An Open Letter to the British ColumbiaMinister of Health from Barbara Rodrigues,
Mother of Jeremy
March 16, 1998
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 littleboy with big, brown eyes and an infectious smile. He is also autistic. Jeremyhas 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 toysappropriately.
The current level of government funded programs are inadequate to dealwith the many needs of an autistic child. I had been left with a feelingof hopelessness at the scanty interventions that have been offered to mychild. But out of that hopelessness, came a need to further investigatetreatment and options available to our son. From my research, I found hopefor Jeremy. That hope comes in the form of Lovaas-type Applied BehaviorAnalysis.
There is 30 years of proven medical research that states that this isthe best way to treat autistic children. 63 licenced B.C. psychiatristsdeem this 'medically necessary treatment.' I have read countlesstestimonials from parents on the positive effects of this treatment fortheir autistic children.
So, now seemingly the only thing left to do would be to get a Lovaas-typeABA program going. A lot of work, yes, but we're up to the task. We havehope, we have a scientifically proven program, right?
Poof! Welcome to the real world. Not only is this treatment notcovered by medical, there's no program or consultants here in Canada. Everytime 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 wasknown about here in the Okanagan and kept from me intentionally.
But as I said, I have researched treatments, not just Lovaas-type ABAbut all treatment for autism, and know beyond a shadow of a doubt that thiswill 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 Ifeel in a way maybe other's can relate.
Let me start off by saying that I am using a child with cancer and thetreatment of chemotherapy purely as an analogy. I in no way feel that thesituations are the same or can be compared. I am not stating that I cancompare myself to what the parent of a child diagnosed with cancer mustfeel or goes through. I am merely using the disease of cancer and the treatmentof chemotherapy as a comparison to what it is like to ask for a treatmentand 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 treatmentof 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. Weheard that they have even cured some children.
Doctors: Umm, yes, we heard about chemotherapy. But those of acure, well, I think the children were misdiagnosed to begin with. Plus Iheard it didn't cure them all.
Parents: Well, yes, we realize it didn't cure them all but weheard it gave all of them more time.
Doctors: Look, here's what we will do for little Johnny, we'llgive him intravenous ampicillin. Although, he will have to go on a waitinglist for it.
Parents: Isn't that the same thing as penicillin? And no, don'twant 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 havebeen using penicillin for cancer for long time now.
Parents: But the penicillin doesn't work for cancer. It's finefor other things but not cancer. Please, won't you help your child.
Doctors: No, there's just no money for chemotherapy. This is whatwe have to offer. Now get little Johnny up on the table and we will putin 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 thethree years that we have been involved, I have been let down and disappointedmore times than not.
Until this year, I believed that everything that could be done for myson was being done. I naively believed that everyone involved had my child'sbest 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 outwhat treatments work best to help my child.
Now, when I am finally asking/demanding treatment for my son - I getthe run around or half-baked ideas that are meant to pacify me and are notmy initial request. I feel as if I am in a war and all I am asking is "Won'tsomeone help my son?"
I am ill-equipped for this war. I don't have the years of experiencebehind me as do you Government officials. I am in this for love - thus makingme emotional and an easy target for you. I am only one whereas you havemany in your chain of command. My only weapons against you are my pen andmy voice - seemingly insignificant to you. Let me tell you though. I willnot 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.
1876 Fairford Dr.
Penticton, BC V2A 6C8
20641 - 46 Ave., Langley, B.C., V3A 3H8 Canada
Ph. (604)534-6956 Fax (604)534-9527
Director: Dr. S.K. Freeman