On Friday, a letter was mailed to a family about their 13-year-old autistic son, Maxwell, and amongst other unspeakable things, it stated how everyone would be "better off" in the neighbourhood if the family either moved or euthanized the boy.
I don't need to get into detail about this letter because it's everywhere. When my friend, Karla Begley -- Maxwell's mother -- told me about the letter, my first reaction was to utilize our amazing World Wide Web to expose this in the biggest way possible.
I knew people would rally, and I wanted Karla and her family to be reassured of the existence of good. Just pure faith in the dream the world would come together, and with one united universal hug, destroy any power that awful letter possessed. I know, I know. It's lofty.
My sister, Kathy (Karla's best friend) and I were on a mission. We developed the hashtag #love4Maxwell, and enlisted the help of our celebrity family members. Our sister and my husband's brother, Marylynne and Brad, are the award-winning Canadian country artists The Stellas. They are also the parents of Lennon and Maisy, YouTube sensations with over 40 million views and regular cast members of ABC's "Nashville." Like everyone who knows the Begley family, they love and respect them. They said their family read the letter together, cried, and collectively decided they needed to join the campaign for awareness and love for Maxwell.
Along with many other supporters, Lennon and Maisy tweeted about it on Sunday evening, and we were up all night watching the support alive. The next day, the letter and the Begley story were on Buzzfeed, The Huffington Post, USA Today, all over Facebook and Twitter (even Miley Cyrus and Chloe Moretz were tweeting about it), and five pages of a Google search showed related articles from all over the world.
One word: Viral. Operation Lofty Dream is a reality. Now what? Now that everyone's invested in this united universal hug, what do I want them to know?
Well, I want people to know it's not about the letter. And it's not about who wrote the letter. It's about the people who received it.
Just over 15 years ago, during her pregnancy with Jackson, Karla's body began to show signs that something was wrong. Facial paralysis and numbness in her legs led her to seek medical attention, and after numerous tests, she was diagnosed with Multiple Scleroses.
With doctors telling her that the condition was progressive, and she could look forward to things getting worse, Karla and her husband, Jim, decided to have another baby while she was still in fair physical condition. The family became acquainted with the world of autism when during her second pregnancy, Jackson was diagnosed high-functioning on the autism spectrum.
Maxwell was then born, a healthy and beautiful boy despite Karla's many MS relapses throughout the pregnancy. It wasn't long before there was concern. Their toddler was non-communicative, and not engaging.
Doctors quickly determined Maxwell was autistic, but unlike his older brother, his was a severe case. Even though Maxwell was scared of social activity and noise, his bond with his mother was beautiful, always showing incredible affection towards her.
But as Maxwell grew stronger and bigger and faster, his mother grew weaker and more uncomfortable and less mobile. Everyone watched helplessly as Karla's progression went from cane to walker to wheelchair in under 10 years. Living in a non-retrofitted multi-leveled house and taking care of Maxwell made the simplest tasks near impossible for Karla.
She fought it every step of the way, and although her determination to remain independent was inspiring, the MS wasn't kind to her. Her disease didn't care that her autistic son could now out-run her, that her legs were needed to keep him safe.
Karla's mother began taking Maxwell to spend days with her in Newcastle. Grandma's home is familiar to Maxwell, so the routine of going there quickly became more than a comfort. Like most autistic children, routine is important to Maxwell's happiness. He's happy there.
As a mother of a cancer survivor, I know the pain of having to watch your child suffer, and long before the infamous letter, Karla had cried about how much it hurt her when Maxwell was not accepted by other children or stared at by adults.
It always breaks my heart to see her sad. But, honestly, there are many heart-breaking stories about what they've endured being parents to a severely autistic child. And probably even more about the pain and frustration of Karla's Multiple Sclerosis. It's astounding, actually, how one family can be put through so much. They are all so special.
Jim Begley has dedicated his entire life to his family and exemplifies what it means to be a great husband and father. He is talented musician, and has made music a huge part of their lives.
Their eldest, Jackson, is extraordinarily gifted. He plays every instrument, writes, produces, and records original compositions ranging from rock to full orchestral scores. His Facebook page has 40,000 likes and there are 20,000 plays on Reverbnation.com.
Karla's mom, Brenda, is also a strong player in their support system. Along with helping with the kids, she'll often cook and deliver meals to the family. Sadly, Karla's Dad, Don, passed away four years ago. Last Father's Day, Karla shared this on Facebook: "Happy Father's Day, Dad. You are still thought of every day. I know you are looking over me and the boys. Every day, I see more of you in Maxwell. He comes out with some of your unique traits, so I know your influence is there with him. I love you, Dad."
Let's get back to the letter. It came to these people -- people who are already dealing with more than anyone I know. People that have inspired everyone fortunate enough to know them. You know what? They will face this with dignity and rise above. They always do because there is so much love in this family. It doesn't matter how pink the paper is or how many exclamation marks there are -- there's no way this letter can take this family down if everything else they've been handed has failed. Whoever wrote this clearly had no idea the kind of strength they were challenging.
So, yeah. I guess that's what I want people to know. That the letter doesn't matter. It's not about the letter. It's not about who wrote the letter. It's about the people who received it.
Donate to the Begley family and show them your support on Twitter with #love4maxwell.
According to <a href="http://www.cdc.gov/media/releases/2012/p0329_autism_disorder.html" target="_blank">a parental survey conducted by the CDC</a>, prevalence has increased <a href="http://www.nytimes.com/2013/03/21/health/parental-study-shows-rise-in-autism-spectrum-cases.html?_r=0" target="_blank">from 1 in 86 in 2007</a>. In 2012, <a href="http://www.cdc.gov/ncbddd/autism/data.html" target="_blank">the CDC estimated that 1 in 88 kids have an ASD</a>, an estimate that is not incorrect, but relies on different sources. Rather than parental report, it looked at medical and school records to determine prevalence.
Autism is found in <a href="http://www.cdc.gov/features/countingautism/" target="_blank">1 in 54 boys</a>, compared to 1 in 252 girls.
<a href="http://www.ninds.nih.gov/disorders/autism/detail_autism.htm#233533082" target="_blank">According to the NIH</a>, early indicators include: No babbling by age 1, no single words by 16 months, poor eye contact and more. (<a href="http://www.ninds.nih.gov/disorders/autism/detail_autism.htm#233533082" target="_blank">Click here for more information from NIH</a>.)
<a href="http://www.ninds.nih.gov/disorders/autism/detail_autism.htm#233543082" target="_blank">According to the NIMH</a>, both <a href="http://www.childmind.org/en/health/disorder-guide/autism-spectrum-disorder" target="_blank">genetic and environmental factors</a> could contribute.
Autism is treated with <a href="http://www.childmind.org/en/health/disorder-guide/autism-spectrum-disorder" target="_blank">therapy, education plans and medication</a>. Doctors and scientists say that <a href="http://www.ninds.nih.gov/disorders/autism/detail_autism.htm#233563082" target="_blank">early identification and intervention</a> for children with an ASD can help them thrive in academically and socially in the future.
Even when <a href="http://www.npr.org/blogs/health/2013/03/29/175626824/the-number-of-early-childhood-vaccines-not-linked-to-autism" target="_blank">multiple vaccines</a> are given to a child on the same day, they are still <a href="http://vitals.nbcnews.com/_news/2013/03/29/17516929-new-study-finds-no-link-between-too-many-vaccines-and-autism?lite" target="_blank">not at risk</a> of developing <a href="http://www.huffingtonpost.com/geraldine-dawson-/autism-awareness-day_b_2979117.html" target="_blank">autism</a>.
Studies have also shown that if a child with an ASD has an identical twin, the other will be affected anywhere from <a href="http://www.cdc.gov/ncbddd/autism/data.html" target="_blank">36-95 percent of the time</a>.
Children whose <a href="http://www.ninds.nih.gov/disorders/autism/detail_autism.htm#233563082" target="_blank">language skills regress before they turn 3</a> have been found to have a higher risk of developing epilepsy.
These <a href="http://www.reuters.com/article/2012/01/23/us-anxiety-autism-idUSTRE80M0EO20120123" target="_blank">disorders</a> include Bipolar Disorder, Fragile X syndrome and Down syndrome according to the <a href="http://www.cdc.gov/ncbddd/autism/research.html" target="_blank">CDC</a>.
The CDC recommends <a href="http://www.cdc.gov/ncbddd/autism/screening.html" target="_blank">children be screened</a> when the are 9, 18 and 24-30 months.
<a href="http://www.huffingtonpost.com/2013/04/15/this-is-autism_n_3064385.html" target="_blank">LOOK: This Is What Autism Looks Like</a> <a href="http://www.huffingtonpost.com/2013/03/20/autism-prevalence_n_2909533.html" target="_blank">Study Shows Big Leap In Autism Prevalence</a> <a href="http://www.huffingtonpost.com/brenda-rothman/autism_b_2733094.html?utm_hp_ref=parents-autism" target="_blank">Autism Is Not a Parenting Fail </a>
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