"BC Ministry for Children Abandons Boy with Autism"
"BC Ministry for Children Abandons Boy with Autism"
MLA TOWN MEETING
I would like to voice my concern and outrage at the current level of help or lack thereof for autistic children.
My son Jeremy will turn 4-years-old in March. He has no useful language. No self-help skills, doesn't dress/undress himself, is not toilet-trained. He has no social skills.
The present system is inadequate to deal with autistic children. The funding and services are lacking. We were on a waiting list for over a year for speech therapy and even then the current generic approach used for language delayed kids doesn't address the needs of autistic children. They learn very differently and hence, need to be taught very differently.
The Government needs to address the fact that there is a lack of knowledgeable professionals who know how to teach and deal with autistic children.
The only one that I have met is a behavioral consultant whom we weren't even told about until Jeremy's behavior had escalated to the point where I could hardly get him dressed in the morning due to his tantrum behaviour and lashing out. He was constantly hitting himself and me in frustration and rage and had constantly been pulling the hair out in the back of his head leaving a noticeable bare spot.
By November of last year, I finally applied for respite. Although we've been approved by the panel in Victoria, there is no money available for the service. I am told that maybe in the summer but with the current state of affairs, who knows.
Due to frustration at the lack of progress my son has made, I began to research autism and treatment options. This is where I found out about the Lovaas method of autism treatment and the great improvement it achieved for autistic children. This is where I found out about FEAT of BC. A non-profit organization made up of parents, relatives and friends who have decided to band together to work for universal access to effective autism treatment for all children diagnosed with autism and pervasive development disorders. The parents are running Lovaas home-based programs for their autistic children.
The Lovaas method is the only scientifically backed, medically endorsed treatment available to autistic children. But the Government excludes it from the Medical Services Plan.
Sixty-three (63) licensed B.C. psychiatrists deem it as ' Medically Necessary Treatment'. Yet the B.C. government chooses to ignore them and discriminate against our autistic children.
So after extensive and exhaustive research, through books, articles, hundreds of testimonials from parents of autistic spectrum disordered children and the vast wealth of information on the internet, my husband and I have concluded that the best way to teach our son is through the Lovaas method approach. We know first hand that the interventions supplied by the government are showing little or no progress. In fact, the only program that is showing any improvement, they are now trying to take away -- but that's another fight and I will get in touch with you when that time comes.
To do this Lovaas treatment, we have to fly in consultants from the U.S. and have them train us and the therapists that we have to hire and pay to work with our son so that he will have a chance to live as normal a life as possible.
I have had to go to the community service clubs and ask for money to help my son because the government refuses to do so.
When I asked about this treatment option which requires between 20-40 hours of therapy a week, I was told by the professionals that the FEAT people were fanatics and further more, if they (the professionals) worked with a special needs child for 4 hours a day, you'd see improvements. Neither of this is true. FEAT of BC seems to me to be dedicated, loving parents who want the best for their autistic children and feel it is their children's right to have proper and proven treatment paid for by the Government.
Also 4 hours a day of just any old therapy would not achieve the proven results of Lovaas treatment. Not all children need or require the intense treatment that autistic children so desperately need to learn in the crucial early years.
Furthermore, there is world wide research stating that early intense treatment is the best option for these children. The current government programs of 1/2 to 1 hour a week are definitely not enough. The resources and services are underfunded and understaffed. The needs of autistic children must be addressed by the government. Especially when early intervention is so very important. Our kids don't have the time for long waiting lists.
Before I go, I just have to tell you about one of these fanatical FEAT mothers whom I talked with last week. She is a single mother with a 3 1/2 year-old autistic daughter and a six-year-old son. She works full time. Her husband left her two weeks after her daughter's diagnosis. She is running a home-based Lovaas treatment program for her daughter. Her daughter is now saying ten words after seven months of treatment. I know this for a fact as I had the pleasure of listening to her on the phone.
To support her daughter's treatment, because the government refuses to, she rents out part of her house to two strangers. She has to share her kitchen, bathroom, living space. On her lunch hours, she tries to do some sort of lobbying to get this treatment funded by the government, such as faxing letters to government officials, speaking at meetings.
On the night I talked with her, she had just got back with her kids from the park - 'cause kids need to play too. So you can imagine this woman's plate is more than full. Yet the night she called me - she asked for no pity for herself, she complained not of her broken marriage but instead offered advice on how to keep mine together. She did not deny her daughter's autism but accepted it as her uniqueness. Yes, she was adamant about the Lovaas autism treatment because it was working for her daughter and was giving her a chance.
That night she called to offer me support, to tell me that my son, Jeremy was lucky to have a mother like me- who won't accept the inadequacy, the uselessness, the hopelessness that was all the government funded programs had to offer my autistic son.
She listened to me rant and rave about the ignorance, the arrogance, the belligerence that I have encountered here in the Okanagan. Then she told me that she had to go- bath the kids- try and get some sleep. As you can imagine, her day is long. She told me to call her anytime that I needed someone to listen.
Before she hung up, she said she would say a prayer for my son and our family. She told me not to give up hope.
I would like to say if that's fanatical... I can only aspire to be so.
My name is Barbara Rodrigues.
My son is Jeremy.
He cannot talk.
But his voice must be heard.
Thank you.