I recently wrote a letter to the parents of the other children in Will's Pre-K class thanking them for their support and patience this year. I wanted them to know how grateful we were that Will could be a part of the class this year but most importantly, I wanted them to know that the opportunity to attend this preschool and be in class with their children has changed the trajectory of his life. Sounds a bit dramatic, right? Let me unpack that statement for you. By the time we entered preschool last fall, we had already been told by other schools that Will had no potential. We had been told by a therapist that there was nothing more that could be done for him. And we had been told by a teacher that basically, it would be a miracle if he ever made up his learning gap. He was testing at 2-3 years below his grade level and social interaction was only just emerging. There were many learning curves throughout the year in academics, on friendships and in classroom behavior. No matter what happened Matt and I, Will's teachers, the preschool director and his therapists persisted. We persisted because we knew that those people who tried to hold him back, who only looked at what was on the surface were wrong. Here we are at the end of the year and Will has made friends. He wants to play with other children. For the first time in his life, he understands what a birthday party is and was excited to participate and celebrate for his friends. His language is exploding and becoming more complex. During his end of year assessment, he tested at entry level for Kindergarten in most of his academics. See, those people were wrong because autism does not fit in a box. A set of symptoms do not define a person nor do they automatically predict the outcome of their life. A child who struggles to focus, communicate and exhibits aggression due to frustration is not a lost cause. Behind every wandering thought, every lost word and every unintended hit, there is a sweet child desperate to connect, desperate to learn and desperate for things to come just a little bit easier. Never let anyone convince you your child has no worth and that they will never be more than a common set of characteristics. Every child, disabled or not, is an individual with a gift to give this world. All children deserve to be nurtured and given the opportunity to develop their unique characteristics. I don't know if Will is going to college or if he will ever play on a sports team or honestly if he will ever live on his own. I can't predict anything, but I sure will keep pushing and fighting to give him the life he wants no matter what the "experts" around me say. The road leading up to today has been hard. Every easy path that opened up to us seemed to be quickly cut off. The most difficult and heartbreaking road has led us to the right place every single time and God's outcome is always so much sweeter than what I imagined. It's been an extraordinary year surrounded by extraordinary people. Congratulations to a little boy who works so hard at things that come so easy to others, whose light shines bright and who continues to move mountains. We are so proud of you. "I sing because I'm happy, I sing because I'm free,
For His eye is on the sparrow, and I know He watches me."
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In light of Jimmy Kimmel's recent monologue about his newborn son's health issues, I am inspired to get a bit political on you guys. I try very hard to leave politics out of everything, but there are some issues that are very near to my heart. Will's diagnoses and subsequent journey have shifted my black and white view of the world to shades of gray. Before Will, I was that person who said if you want to get anywhere in life you just need to work hard. This is America, the land of opportunity! There is no reason anyone can't succeed. If you are poor, hungry and destitute, then you are the product of your bad decisions. It is not my responsibility to help every person that can't help themselves. I was judgmental. Oh friends, I was so so wrong. Our family is very, very lucky. Matt works hard, he is good at his job and he is a loyal employee. We have almost always had coverage for Will's therapies and when things got complex, his employers would go to bat for us. Last August, Matt's company was sold to another company that did not offer coverage for Will's therapies. Without insurance, Will's therapies cost in the range of $80,000-$100,000 a year. Not even the top 1% can sustain that cost over a number of years. Despite their best efforts, Matt's former company could not make a deal to have Will's therapies continued until the next January when they would start covering everything. We were able to purchase a plan through the Affordable Care Act that would allow him to continue getting necessary, evidence-based therapy. In this country, no child will go without the necessary treatments to literally survive BUT many families do go without necessary treatments for quality of life because they cannot afford it. I see it every single day. Families deciding between therapies because they have no insurance coverage for any of them, families going into debt in the hopes of giving their children any quality of life and parents who are scouring the internet and pulling on any resource available to learn how to administer the therapies themselves. On top of poor healthcare, those of us with children with special needs are at constant odds with an education system that continually fails our children and sees them as little more than a burden. There are excellent teachers and therapists out there that are not allowed to do the job they trained so hard for because our kids cost too much and are a physical burden to the school. It's an archaic system that gives priority to typically developing children because of the belief that they are the only children who can lead successful, productive lives as adults. I am currently discussing with our district why they cannot send Will to an elementary school 20 minutes away from us rather than the elementary school we are zoned to. It's federal law; however, they are hoping that I'm not aware of federal law. Our journey into the public school system is not buying new backpacks, crayons and clothes. It's not a sweet, smiling picture of our kiddo on their first day. It's a constant battle for basic rights. Going elsewhere is not option. I tried. I went to private schools, speciality private schools and charter schools. None of them would accept Will. You will forgive those of us who tear up or become angry when we see our own friends talking about or posting their excitement at the idea of abolishing needed healthcare, about pushing children with pre-existing conditions into high-risk pools with healthcare they could never afford. You will forgive us when we are angry that the state of Texas cuts crucial funding for therapies desperately needed by low-income families and is already under investigation for not providing necessary services in public school. You will forgive us when we are angry at the nomination of a Secretary of Education who does not know what the IDEA act is and whose idea of school choice is really segregation. Because of necessary therapies and because I have fought to give Will an appropriate education, he is thriving. Four years ago, Will and I would spend hours in his bedroom because it was the safest place in the house for him to continually hit, bite and kick me. He couldn't make sense of his world, he couldn't communicate and he was very unhappy. Today, he is a happy child who participates in a typical preschool, is forming sentences, interacting with his peers and brother and has a very bright future. There are things in this world that do not require debate. Helping each other to lead full lives, loving each other fully and embracing lives outside are own fall in that category. No, we can't help everyone but we can all lead in small ways that make a big difference. |
Charming, quirky and incredibly loving. Will loves his friends, swimming, the iPad, the Avett Brothers, observing the world upside down, climbing, jumping and being chased.
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