"BC Ministry for Children Abandons Boy with Autism"
"BC Ministry for Children Abandons Boy with Autism"
The "System" Failed My Child
A column by Barbara Rodrigues on her experience with an Okanagan professional who withheld knowledge regarding Lovaas Autism Treatment.
My Side
I am relatively new to the Lovaas treatment approach and FEAT of B.C. My son is now 4-years-old and I am waiting for my Behavioural Consultant to come and set up my son's program. This treatment option was known by some in our community, yet the knowledge of it was intentionally kept from me. My son is still nonverbal, has no self-help skills (not feeding/toileting/dressing/undressing) and has no social skills. The anger I feel at being denied the knowledge of this treatment option is indescribable - I have tried to write it in words but my rage is too overwhelming. So, a wise woman I spoke with told me I must just move on -- I am doing so. I have erased those people from my little boy's life. But I wanted to share what I wrote, in response to one of those people asking to come over and discuss "their side." Their side being the reasons they denied me knowledge of this treatment choice. Their side being why they don't like this approach - having never been involved in it.
Your Side?
You want to tell me your side? Well, I don't want to hear your side.
For you have no side.
You were paid to help my son and you did not.
You haven't earned the 'right' to have a side.
You haven't held a screaming raging child for 4 hours at a stretch.
You haven't not had a good night's sleep in four years.
You haven't held my son through numerous blood tests, brain scans, doctors appointments so that everyone can dissect him in the quest for a diagnosis.
You haven't sat there and felt the overwhelming weight of emotion and fear at being told, "Your child has autism"
Or seen the look of complete sorrow in the eyes of the Doctor as she says, "I don't know what his future holds."
So you have definitely not earned the right to have a side.
You haven't changed a thousand diapers
Or had to sit on a screaming, thrashing child just to get him dressed or brush his teeth.
You haven't stayed at home or away from group events because being around other people would send your son into a tantrum.
Or watched at the park as my son walked past the playground and the children to stare vacantly at the water.
You haven't felt the sorrow as another Christmas, another birthday, another holiday comes and your child is still unaware of it.
You do not have a side
For you have not listened with envy as other parents talk of their kids' hockey trips, birthday parties, after school activities or friends.
You have not stood there wondering/hoping/praying that someday - just maybe - that might be you.
Or had people tell you, "Oh, just have another baby and you will have all those things", as if to say, "Just give up on this one."
But the most important reason you don't have a side...
You must have never seen the look of complete sorrow and frustration in my son's eyes as he tries so
desperately to communicate but cannot
Or felt the helplessness of watching as he hits himself in that same frustration and anger.
You must not see the little boy inside those eyes - trapped.
You must not believe in his potential or his ability
For if you really saw and felt those things, you could never, would never have denied him this hope.
And that is my side.
Barbara Rodrigues
Mother of Jeremy