"BC Ministry for Children Abandons Boy with Autism"
"BC Ministry for Children Abandons Boy with Autism"
"Amazing Progress against autism" What Jeremy was like after 2 years of ineffective BC Government programs, and then after only 5 months of effective, Lovaas-type autism treatment.
The letter below, describes the tremendous progress Jeremy has made with Lovaas treatment, it was presented to BC Children's Ministry personnel at their October 2, '98 meeting with Barbara Rodrigues.
BC Children's Ministry personnel in Southern Interior region, present at this meeting, did not bother to read this important letter. Still more shocking, they did not bother to ask how Jeremy is doing in his struggle with autism. They simply did not want any information on the condition of a disabled child for whom they are responsible as a matter of public duty. They were simply there to tell Barbara they will not provide funds that can be used in the Lovaas autism treatment program or her son.
SUMMARY OF JEREMY RODRIGUES AFTER YEARS OF BC GOVERNMENT PROGRAMS AND BEFORE LOVAAS THERAPY
Little or no eye contact.
No reaction when you called his name.
Expressive language - little or no babbling, did have periodic words but lost these all by November of 1997. Mainly screamed and moaned for most of his needs.
Receptive language - unable to understand language, unable to follow simple instructions.
Sleeping Patterns - never slept through the night - waking at least once, quite often two or three times during the night. Unable to go to sleep until least 10-11 pm. Thrashed and rolled violently while sleeping.
Self-help skills - nil.
Tantrums - quite often during the day. Beginning with getting him dressed in the morning, changing his diaper, continuing on with transitions such as going from inside the house to outside the house to go play. Tantrums from inability to communicate his needs, including hitting himself, me, throwing things, screaming, back arching, pulling out his hair.
Hand lead for communication - pulling you by the hand and throwing your hand on top of what he wanted, never looking at you.
Social skills - nil. Never acknowledged or played with children even though he was in a preschool program from September 1997 until April 1998. Had no interaction or interest in adults either.
Jeremy had no initiative or ability to make choices for himself. Unable to express his needs in any forum other than screaming and tantruming.
Stimulatory behaviors included but not limited to - spinning wheels (on any toy with wheels, his tricycle, his wagon) Pulling and picking up hair and lint and running it through his fingers - he had a bald spot from doing this constantly even in his distressed sleep. He stimmed on reflections in pictures frames, holding them up to his eyes and looking at different angles. He swung plants and tree branches outside. Stared at his fingers at odd angles. Obsessive fascination with labels on groceries such as coffee cans, bleach bottles, peanut butter, ketchup bottles. Banged his knuckles repeatedly on surfaces constantly resulting in huge, painful callouses on his fingers.
Overall disposition - angry, frustrated, very sad, lost little boy.
TODAY FIVE (5) MONTHS INTO AN INTENSIVE LOVAAS PROGRAM
Tremendous eye contact.
Reacts when you call his name.
Expressive language - babbling nonstop, able to say some sounds on demand, has said some words such as 'banana, up, out, on, elmo, ernie'. Although these are sporadic and inconsistent - it is a definite start to language!
Receptive language has increased tremendously. He is able to identify and generalize as of today 117 receptive nouns. He is able to follow simple one and two step instructions. He is able to understand simple sentences and understand simple language.
Sleeping patterns - greatly improved. Since July 1998 (two months into the program) Jeremy has started to sleep through the night- going to bed at 8-8:30 pm and sleeping until 6-7 am.
Tantrums - limited to certain days and areas of distress. Now occurring once every 2-3 days.
Social skills - shown dramatic results. He now acknowledges his therapists when they come to the door. Smiling and dragging them downstairs to 'go play'. He is noticing adults and looking at and exploring everything! It's as if someone turned the lights on and he's just realizing there's a world out there. It's like literally watching Jeremy 'wake up'. Our most precious moment came early this July. For years I have said 'Daddy's home!' to a child who seemingly did not hear me. Joe would come through the door and grab Jeremy for a big hug, only to have Jeremy scream in anger at being disturbed . . . today, I say 'Daddy's home!' and Jeremy's eyes light up and he runs to the door to greet his Daddy. Joe and I still remember the day that it first happened and Joe said 'Look! He's smiling at me!'
Today, Jeremy is showing an interest in children at the park . . . before not even looking at them. We have been asked by children before if Jeremy is blind and deaf. Today, he takes the initiative to interact with them. I will be taking Jeremy to socialize at some Community Center programs as there are no adequate or cooperative preschools in the area able to offer the appropriate education or interaction that is required for Jeremy's socialization as defined by Dr. Lovaas (open letter attached) and Dr. M.I. deLevie.
Jeremy is now able to make choices. Such as choosing toys, foods, books, toys, etc. that he wants. This summer he picked and ate raspberries on his own without even being taught. Before he would have just stood by the raspberry bush and screamed and jumped up and down. He also picks grapes and eats them at his grandparent's house. Today he is able to point, gesture and bring you items that he wants or that are of interest to him.
Stimulatory behaviors have decreased considerably and some have all but vanished. His hair pulling disappeared within the first week of treatment. Today, he plays with his wheeled toys appropriately. He rides on his tricycle and climbs into his wagon for a ride. His obsession with labels is all but gone. Very sporadic. No longer carrying around a ketchup bottle. Today, he hardly shakes trees and does not touch the plants. He has completely stopped the finger banging and his callouses have long since healed. He now rarely stims on the picture frames.
Play skills today include playing basketball, playing with playdoh, playing appropriately with his loader, schoolbus, cars. He is able to do a ring stacker, shape sorter and scribble with a crayon.
He is able to do puzzles.
Jeremy can receptively identify and recognize 22 letters of the alphabet. We are working on numbers too.
Self-help skills - able to feed himself finger foods, such as pieces of banana, raspberries, grapes. Learning to take his shirt off and on. Holds his feet up to let you put on his socks. Can step out of his pants and shorts..
Overall disposition- Happy, content, very active, energitic, bright little boy eager to learn.
That's the good news. The bad news is that Jeremy is still quite delayed in areas of language both receptive and expressive, fine motor and imitative skills. He is definitely lagging in social skills and play skills. He still needs to be redirected as if left on his own will engage in stimulatory activities. He is overall quite delayed for a 4-year-old child due to lack of appropriate intervention or treatment that the Government should provide. There are no professionals with any adequate training or specializing in autism in the Okanagan. Jeremy will indeed require this intensive 40+ hour a week therapy for at least a duration of two years. Considering that Jeremy is showing such remarkable results, we fully expect the subsidy we are receiving towards Jeremy's Lovaas program to continue.
We fully expect that the Government provide the funding of a full time aide to be paid directly to us. We have expressed our reasons for this as being the fact that turnover with therapists is high. It is also beneficial in the sense that if the money is paid through us to our therapists, they remain loyal to our son. We also run a highly effective, quality program and I oversee and direct my therapists through our son's Lovaas trained consultant. They are constantly critiqued and supervised by me. If the money for the aide comes from Supported Child Care then we see no reason as to why they can't contract to me and I will subcontract to my therapists.
We will be in need of advice and input from a Speech Language Pathologist and since there are no adequate, competent local SLP, we will recruit and interview our own Speech Language Pathologist when our Lovaas consultant deems the input necessary. We will fully expect the Ministry to pay this SLP directly and will be in touch when we find a person that is able to enhance and work with Jeremy's Lovaas treatment program, our consultant, and our therapists and our son.
Currently we are providing treatment for our son's autistic disorder. He needs have been clearly defined for the MCF by his specialist, Dr. M.I. deLevie. Considering the medical opinions given as to what fits the best needs of Jeremy, we look forward to full cooperation from this Ministry in continuing to support us in our efforts to help our child.
Jeremy has proven without a doubt that his is able to learn and achieve a great many things. The Ministry and this region has nothing to offer our son in lieu of this scientifically backed 'medically necessary' autism treatment. We have enclosed for you, two scientific journals backing our treatment choice and an open letter from Dr. J. Garland supporting Lovaas treatment.
This meeting today is another one of our many efforts to try and get our son the treatment that he requires.
Sincerely,
Barbara & Joe Rodrigues