A letter to my family.

I sent this to my family today. Thought I’d share it with you all. Autism is treatable. It’s preventable. Spread the word my friends.
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It’s World Autism Awareness Day!

Four years ago Charlie had lost his language, was non-verbal, and diagnosed with autism. A local “autism expert” told Mike and I there was no cure and that Charlie would eventually need to be institutionalized. Institutionalized… Charlie… Think about it. To be honest, I can’t think about it – makes me sick to my stomach, angry, and very, very sad. This “expert” warned us to steer clear of the “witchcraft movement” of parents attempting to treat children biomedically. And as a parting gift, he suggested we let go of any dreams we had for our son in terms of friendships, college, marriage, children. Instead, we were to envision a more attainable dream for Charlie – learning to communicate so that he could express his needs to his caregivers as he grew older.

Our pediatrician, upon hearing the diagnosis and me asking if there was anything I could do to reverse what was happening, told me Charlie’s prognosis was “lifetime” and not to “fall for” the liars and charlatans out there saying autism is treatable. He told me we should enjoy our little boy as much as we could before we would no longer be able to handle him or care for him. Oddly, this doctor did not perform one medical test in an attempt to explain the GI trouble, red cheeks, running nose, etc. Instead he just handed me a piece of paper telling me our son was essentially lost to us. This non-speaking, tantruming, unhealthy boy was as good as it would ever get. He wouldn’t speak. He wouldn’t say “I love you.”

I guess it’s a good thing I’m hardheaded and a wee bit of a rebel…

If we had listened, had not dared to go against the mainstream, Charlie might very well have ended up in an institution some day, out of control with his autistic behaviors – or drugged into calmness. That’s not me being dramatic, that’s reality for a lot of children with autism. Sadly, several of my friends are facing this reality with their children.

Thankfully, through biomedical treatments (none of which were covered by our insurance), we were able to give Charlie a chance to live a full, happy, and healthy life. We started early and had success. We could not have made it through all of this without the support and love of all of you!

To Julie and Calvin: A mother couldn’t ask for two more unbelievably wonderful kids. You would have been well within your rights to be resentful towards Charlie and about the focus we’ve had on him these past four years. Yet neither of you chose that path. Instead, you chose to love your brother unconditionally, for that you have so much love and respect from me. You’re both awesome and I just love you so much! Always know that.

To Mom and Rick: Charlie is where he is today because of your generosity and unconditional love. Add to that the moral support you provided to Mike and me by believing in what we were trying to do – reading the research and articles I would send you – not many people are willing to do that. Thank you from the bottom of my heart.

To Dad and Sheryl: For your love and support. We were able to get Charlie to the very best pediatric GI specialist in the country because of you. A huge piece of Charlie’s “autism puzzle” was solved because of that trip. Thank you.

Ulla and Maurice, for helping whenever you could (and Ulla for helping us buy meds for so many months, and cheering me on every time we’d talk). For your unbelievable support and belief that what we were doing was right and good. For loving Charlie. Thank you.

Julie, for being the best sister ever. In the history of sisters. For listening to me go on and on (and on). For supporting my choices, and understanding my need to submerge myself for the sake of Charlie’s health. For always finding a way to connect with Charlie – 1,000,000,000 kisses, the pincher, all those great Aunt Juju things you do so well. Thank you.

Hank, Trip, and Sarah, for loving Charlie and always being kind to him. For appreciating his quirkiness! Thank you.

Sean and Ellie, for supporting our choices, and for loving Charlie. Thank you.

Jacqui, for being the best damned teacher Charlie has ever had!! For loving him so much. For understanding him, and seeking (always so willing to seek) answers to the things you do not understand. For teaching me some things I didn’t know (who knew, right?). For always thinking of Charlie, your “Charlie-man.” For your kindness. Charlie and I love you so much! Thank you.

To you all: Autism is treatable and preventable. Charlie is proof of that. Spread the word on this day of autism awareness.

If you’d like to do something about autism on this day, please just take a moment and think about this: 1 in 91 children are now diagnosed with autism. Today alone, in a 24 hour period, nearly 115 children will be diagnosed. Today 115 parents will be devastated by the news. 115 children. One day. Think about that and think about the parents. Have a moment of silence and ask the Universe to send these parents, and their children, strength. They’re going to need it.

I hope you’ll share Charlie’s story with others on this day of autism awareness.

I love you all so much. Thank you for everything you do for Charlie and for us. You’re the best!
Jeanne
(I’ve attached a picture of Charlie I took this morning. We were working over at our house and he offered this flower to me. He said, “I love you Mom.”)

This entry was posted on Friday, April 2nd, 2010 at 5:49 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.