Thursday, April 2, 2015

World Autism Awareness Day

Homes, buildings and landmarks all over the world will be lit up blue on this World Autism Awareness Day. LIUB is Autism Speaks' big awareness campaign every year. They apparently think autism is something to celebrate. Well, we light it up blue to celebrate our kid, not autism. Autism can kiss my ass.

And in honor of throwback Thursday, I've decided to repost one of the most important blog post I've ever written. I wrote this back in 2010 during Football Wives. Someone had tweeted that Will was my karma for being such a bitch. As awesome as my kid is, I must be a saint! You can click on the post here.

Dawn Neufeld of Football Wives blogs for us every week, giving us weekly behind-the-scenes insight and dishing on each of her show’s episodes. For this special mid-week blog entry, Dawn’s exploring an issue that the show has just touched on: her 6-year-old son’s autism. Via journal entries dating back to Will’s birth and current commentary, Dawn shares her son’s and her whole family’s battle with the disorder…
September 2004 – “Will is such an incredible gift. He has his daddy’s chin and dimples. He’s completed my life, my family. I never thought I could love someone so much. We are so truly blessed.”
On September 23, 2004, Ryan and I welcomed our first child into the world – a son. I was induced two days before my due date to ensure Ryan would be in Buffalo for the delivery – the Bills were heading out to Oakland for a game the following week and I wanted to make sure he was home to experience the birth of his first child. Ryan was in tight-end meetings at the facility when I called the training room to tell them it was time. I remember Ryan telling me how excited the guys were for him and how they couldn’t wait to hear the news. Ryan couldn’t have been prouder when Will was born. I’m sure thoughts of pee-wee football games and Friday night lights crossed Ryan’s mind at some point. They did mine. Little did we know what our special little guy had in store for us.
September 2005 – “Will is so outgoing and happy – he loves to smile. He’s going to have first set of tubes on the 21st though – he’s had seven double ear infections already.”
Will seemed to develop normally during his first year. He hit all his developmental milestones on time. He was a happy, engaged baby with a temperament like his dad’s – mellow and easy going. He did seem to get sick – a lot. We were at the doctor’s office constantly treating ear infections and colds. One doctor’s solution: keep him at home so he’s not exposed to germs.
April 2006 – “Ryan and I are really struggling with the fact that Will isn’t really talking yet…”
I began to recognize Will’s delays when I took him to Gymboree class on Saturdays. All of the other kids would participate in circle time while Will was going up and down the same slide for an hour. I’d listen to the other kids ask their parents for juice or snacks. I was still waiting for Will to call me “mom.” At Will’s 18-month-check up, I was the one who suggested we might want to get Will evaluated for developmental delays. His doctor told me she thought he was fine, but that we’d have him evaluated “just in case.”

June 2006 – “I’ve convinced myself that Will has autism. Today he was stacking blocks when I picked him up from daycare. He didn’t notice or care that I’d come to get him. When we got home, he’d only stack red blocks. He doesn’t talk. He throws tantrums. Is he just being a toddler, or is this a bigger problem?”
By the time Will was 19-months-old, he was in speech, occupational and physical therapy for what were being characterized as “severe delays.” I couldn’t have worked if I wanted to because my days were spent chauffeuring my little prince to all of his appointments.
August 2006 – “Will is not normal. He doesn’t act like a normal two-year-old. I’m worried. I really hope he’s just delayed and that this isn’t what I think it is…”
When Will hit 2, he still wasn’t talking much and hadn’t made a lot of improvement since we started taking him to therapy. We eventually took him to see a developmental pediatrician who wasn’t comfortable making an autism diagnosis at the time. That was somewhat comforting but we still didn’t have any answers.
August 2007 – “As Will’s delays persist, one word keeps coming up as a possible explanation: autism. I’ve been so worried about Ryan getting cut from the team – I think we have bigger issues to worry about.”
Autism is a beast. For people who don’t know what it is, Autism Spectrum Disorder (or ASD) is a neurological disorder that is typically characterized by communication and social delays and is often times associated with repetitive behaviors. It is now estimated that 1 in 110 children are being diagnosed – 1 in 70 boys. Autism treatments are often times not covered by insurance because they are considered “experimental, investigational or unproven.” Some states, including Texas, have passed laws mandating insurance companies cover autism treatment for children, but there are loopholes. We didn’t find that out until we received an insurance denial for over $5,000 worth of speech therapy that we’d initially been told would be covered. The emotional and financial toll autism can have on families is devastating – divorce and bankruptcy are not uncommon as families deal with the condition.
I was always a little jealous at football games when I’d see other wives sitting in the stands with their kids. I chose not to bring Will to the games for so many reasons – he wouldn’t sit still, the crowd noise would be too loud, what if he decided to fall out and throw a tantrum in the stands. I spared myself the embarrassment and humiliation of people staring and judging me because I couldn’t control my kid. Autism can be very isolating.
One of the main reasons I decided to join the cast of Football Wives was the opportunity to promote autism awareness and to show what life is like for families living with autism. I was extremely concerned that the crew, cameras, lights, etc. would upset Will. I will say this, and make no mistake about this fact: if at ANY point I thought Will was being negatively affected by the show, I would have pulled the plug. My kids would’ve been off limits. We did have to set some boundaries with the production crew and they were always respectful and went out of their way to make sure our environment was as normal as possible for the kids. Will was amazing during production and even hammed it up for the cameras occasionally.
Will participates in our local Miracle League sports program, but football isn’t in the cards for him. I always hoped that Ryan would play football long enough for Will to attend a game. That opportunity finally came last year when Will and I flew out to Orlando to catch one of Ryan’s UFL games. Ryan was so excited to finally have his son sitting in the stands watching him play. Will did great too – every once in a while during the game he’d even say, “Neufeld, 88.” The trip wasn’t without drama though. On the flight to Orlando, the passenger in front of us would turn around and glare at Will playing his Leapster game. The man would huff and puff every time Will laughed or squealed with excitement. It wasn’t until I tapped him on the shoulder and apologized for Will’s behavior that he stopped turning around. I explained that I was doing everything to keep him quiet but that he had autism. The man’s attitude changed, and he suddenly seemed sympathetic.
I have to count my blessings where I can find them – Will is moderately affected by autism. There are so many kids whose autism is much more severe. And on the days in which I long for some “normalcy,” I remind myself that Will doesn’t have cancer or some other devastating disease that could cause him pain or eventually cost him his life. For that, I am grateful.
We’ve been involved with Garth Brooks’ Teammates for Kids since 2003. This amazing organization has donated millions of dollars to children’s charities. A couple of years ago, Ryan and I were talking to Garth at an event and he asked about the kids. We mentioned Will’s autism and Garth said something that changed my life: “I’ve never thought of those kids as disabled – they are gifted.” That single comment changed my perspective. I learned to appreciate the small things – new words, extended eye contact, spontaneous hugs. Not too long ago, I told Will I loved him like I always do, and he actually responded with, “I love you, too.” Talk about something that will take your breath away – that single moment was better than any NFL paycheck, touchdown or win. As I listen to Will identify all 50 state capitals from memory at age 6 (I can’t even do that), I am overwhelmed with hope and the potential for his future. We still have a long way to go though and will continue to use our story to try to help others.
This evening as I was preparing to write this blog, I came across a message on Twitter that said the following: “4 some reason wen i see akward lookin couples im never surprised 2 hear their child has a mental Dawn nRyan lol #footballwives” Shocking, right? Comments like this make me so upset and sad, but I can’t blow up every time someone makes an ignorant comment. I can use them to help spread awareness though.
For more information about autism, please visit Autism Speaks. I’m always available to answer questions on Facebook and Twitter.

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