One for all and all for one...
Do you ever feel overwhelmed by advice?
Over the years since my daughter's diagnosis, I have read every book, listened to the pros and cons on medication intervention vs. dietary/environmental changes. I have researched mercury, vaccines, genetic links and illness during pregnancy. I have exhausted myself with information to the point that I finally shut-down within two years of the pediatric psychiatrist saying, "Yes, she has Asperger's Syndrome... it's gonna be great!"
"WHATTTTTTTTTT?" My first reaction was to throw a pie in his face. My second reaction was to slap him.
It wasn't going to be great. This was a nightmare come true. I was scared to death about the future.
"It's gonna be great... it's gonna be great..." Those words rang in my ears for months to come, until one day I finally got it.
I followed up "it's gonna be great" psychiatrist's diagnosis with a month of tests, interviews, genetic profiling and studies at the UCLA Autism Evaluation Center. The tests confirmed Katie's initial diagnosis and the real work began.
Although I had known for years that something was wrong, until the day I actually heard the word "autism" aimed squarely at Katie, the worries were just that, worries.
I cried for months. I immediately became a regular visitor to Barb Kirby's Online Asperger's Support Group (OASIS). I read her book, I read Tony Attwood's book. I have books stacked to the ceiling on autism, Asperger's Syndrome and on and on.
I joined the Santa Barbara Chapter of the Autism Society of America. I went to events. I talked to parents. I was living in a fog of therapies, doctors appointments and education.
Katie had developed suicidal ideation. I utilized a number of alternative therapies, diets and homeopathy.. Her fixations became increasingly draining for her. She wasn't sleeping and the fear of her following through with her threat to jump off the roof were increasingly frightening.
Katie's pediatric psychiatrist was supportive, encouraging and prepared with resources so that I could follow the path of my choice in Katie's treatment. He did not recommend homeopathy over traditional medications, only shared references to parents who had used both as their children were growing up. He is a specialist in Asperger's Syndrome and continually reminded me that each child was different; what worked for one did not necessarily work for another.
I will precede this statement with a fact. My husband is a well-respected, successful psychiatrist. Where he was able to understand the possibility that intervention might help Katie, I was emphatically against the idea of a seven-year-old being treated with medication.
I realized the reality that my child might follow-through with her threat to jump from the roof, was a compelling reason to relent and try medication.
Fast forward six years. With the support of Dr. "It's gonna be great...", we began a medication regimen. Although we spent a good deal of time finding the appropriate intervention, we did achieve success. This success involves medication in addition to homeopathic remedies.
Katie no longer has suicidal ideation. She no longer fixates to the point of exhaustion and overwhelming meltdowns which required physically restraining her from running out of the house. She has more impulse control and the ability to stop and give herself 'time-out' in her room to decompress. She has developed her incredible artistic abilities and is able to use this gift as a means to relax when she is in sensory overload. She is able to sleep.
Is Katie still on the spectrum? Of course she is! Does she have meltdowns? Holy, cow, sometimes! However, she is able to experience happiness in a way that she was completely unable to do before.
I will repeat. Each child is different. What works for my child may not work for your child. More important than holistic, dietary, medication or any other treatments is that we support each other, respect each other and give each other the room to help our children grow to the best of their abilities.
Our lives are filled with well-intentioned people giving us advice. It's their way or the highway. We cannot afford to beat each other up for our individual choices, can we?
I respect those who believe that vaccines may contribute to autism.
I respect those who have found alternative means of treatment to be successful.
We, just like our children, are all different. Let's be there for each other.
"My daughter suffers from autism." I told a woman one day. "I do NOT suffer from autism!" Katie shouted. "My autism is a GIFT. I am a great artist because of my autism!"
"It's gonna be great..." The doctor was right.
I never forget to laugh.
© Cassie M. Ferguson and Autism Funhouse, 2009. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Cassie M. Ferguson and Autism Funhouse with appropriate and specific direction to the original content.
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