This is an older note, written in March 2008. I share it every year as we head into Autism Awareness Month.
When
Robert first came into my life, I was prepared for all sorts of
possible delays and issues. I'd worked with children for years and had
educated myself on all the things that might happen based on his life in
an orphanage. I read books, went to seminars, and was ready for the big
things: Reactive Attachment Disorder, Oppositional Defiant Disorder,
Fetal Alcohol Syndrome. But none of those things manifested themselves.
I worked on bonding with him -- purposely regressing him so that I would feed him, then forcing eye contact while he was eating. I taught him his name (no one had ever taught him his name), and held him as often as possible. He learned English and how to give a "two-armed hug." And I started his musical education early with Mozart, jazz, and big band sounds to soothe his spirit and feed his brain.
At night, after I put him to bed, he would get up and hide behind his bedroom door, giggling, then he would dart out into the living room to see what was going on. He was 3-1/2 but didn't know any English, and almost no Romanian. Telling him to "go to bed" was meaningless, so I would lie down with him until he fell asleep.
And I talked to him. He would lie there and listen to me narrate the events of his day. I would talk about what he'd had for breakfast and what games we'd played. Every night I would tell him 3 or 4 parts of his body: "hair", "eyes", "nose"... and I would touch the corresponding location on his body and amazingly, the little fella would know these words the next morning! Every night I would teach him and each morning, he would tell me his new words. He absorbed language like a sponge! His acquisition was so fast I couldn't keep up with the list of words I was making to share with our social worker on her next follow-up visit.
Soon, I realized (and was so relieved) none of the disorders I listed above would be part of our journey with Robert. But there was something... I knew it wasn't exactly ADHD even though it sometimes looked like it.
Then a friend talked to me, and gently suggested that Robert's issues were neurological and fell under the Autism umbrella. My friend was right and the first diagnosis was Sensory Integration Disorder. Through years of Occupational Therapy in the clinical setting and at home with me, great strides were made, but there was something more... Again, I couldn't peg it, but there was something...
One day I was talking to a friend and she said, "Have you heard of Asperger's Syndrome?" I hadn't but I researched it quickly and Robert fit all the criteria. He is brilliant - a "little professor" as many of these children are, but he has deficits in social skills, language arts, and develops obsessions for certain objects.
You'd think that after all these years, after all the research, meetings, seminars, workshops, and networking with parents and professionals in this field that I wouldn't be surprised by anything.
But Friday morning [in 2008] I was in an IEP meeting at the school and we were reviewing a recent evaluation done on Robert. I am familiar with the test that was used. I am sure the numbers are right. And yet, what's been playing through my head the last couple days are the numbers 4 and 22.
My brilliant little boy has expressive communication skills that test out to an age equivalency of 22 years old. The little professor can build and describe an electromagnet for goodness sake, and he can tell you where your epiglottis is located, so no surprises there.
But because he does not understand all parts of speech, because he does not understand slang and social cues, his receptive communication skills are those of a 4 year old.
4 and 22.
These numbers haunt me.
With the proper therapies the incredible gap between these two numbers will grow smaller. But still they haunt me. What's the missing piece that explains this deficit and will help researchers find a cure and increase understanding?
That critical piece of the puzzle is Autism research and awareness. April 1 will be here soon and will mark the beginning of Autism Awareness Month.
If you know someone who's life is touched by Autism, keep in mind that they are dealing with a puzzle that as yet can't be solved. And if you think they need to talk to someone who understands, encourage them to get involved in a support group, or you can tell them to talk to me.
I worked on bonding with him -- purposely regressing him so that I would feed him, then forcing eye contact while he was eating. I taught him his name (no one had ever taught him his name), and held him as often as possible. He learned English and how to give a "two-armed hug." And I started his musical education early with Mozart, jazz, and big band sounds to soothe his spirit and feed his brain.
At night, after I put him to bed, he would get up and hide behind his bedroom door, giggling, then he would dart out into the living room to see what was going on. He was 3-1/2 but didn't know any English, and almost no Romanian. Telling him to "go to bed" was meaningless, so I would lie down with him until he fell asleep.
And I talked to him. He would lie there and listen to me narrate the events of his day. I would talk about what he'd had for breakfast and what games we'd played. Every night I would tell him 3 or 4 parts of his body: "hair", "eyes", "nose"... and I would touch the corresponding location on his body and amazingly, the little fella would know these words the next morning! Every night I would teach him and each morning, he would tell me his new words. He absorbed language like a sponge! His acquisition was so fast I couldn't keep up with the list of words I was making to share with our social worker on her next follow-up visit.
Soon, I realized (and was so relieved) none of the disorders I listed above would be part of our journey with Robert. But there was something... I knew it wasn't exactly ADHD even though it sometimes looked like it.
Then a friend talked to me, and gently suggested that Robert's issues were neurological and fell under the Autism umbrella. My friend was right and the first diagnosis was Sensory Integration Disorder. Through years of Occupational Therapy in the clinical setting and at home with me, great strides were made, but there was something more... Again, I couldn't peg it, but there was something...
One day I was talking to a friend and she said, "Have you heard of Asperger's Syndrome?" I hadn't but I researched it quickly and Robert fit all the criteria. He is brilliant - a "little professor" as many of these children are, but he has deficits in social skills, language arts, and develops obsessions for certain objects.
You'd think that after all these years, after all the research, meetings, seminars, workshops, and networking with parents and professionals in this field that I wouldn't be surprised by anything.
But Friday morning [in 2008] I was in an IEP meeting at the school and we were reviewing a recent evaluation done on Robert. I am familiar with the test that was used. I am sure the numbers are right. And yet, what's been playing through my head the last couple days are the numbers 4 and 22.
My brilliant little boy has expressive communication skills that test out to an age equivalency of 22 years old. The little professor can build and describe an electromagnet for goodness sake, and he can tell you where your epiglottis is located, so no surprises there.
But because he does not understand all parts of speech, because he does not understand slang and social cues, his receptive communication skills are those of a 4 year old.
4 and 22.
These numbers haunt me.
With the proper therapies the incredible gap between these two numbers will grow smaller. But still they haunt me. What's the missing piece that explains this deficit and will help researchers find a cure and increase understanding?
That critical piece of the puzzle is Autism research and awareness. April 1 will be here soon and will mark the beginning of Autism Awareness Month.
If you know someone who's life is touched by Autism, keep in mind that they are dealing with a puzzle that as yet can't be solved. And if you think they need to talk to someone who understands, encourage them to get involved in a support group, or you can tell them to talk to me.
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