My mom worked really hard to give me, my brother and my sister special Christmas memories. I grew up in a small town, so there were not a lot of pre-planned activities around town. My mom made it all happen. She planned every class party, took us to see Santa Claus, planned our route to all of the cool neighborhoods to see lights, executed perfect family parties, made sure we saw all the classic Christmas movies and took us to mass on Christmas Eve. She visualized intricate light displays that my dad executed and she and my dad stayed up late to make sure all of the gifts Santa brought were perfectly displayed. It was magical and now as a parent, I can say I'm so grateful my parents gave me those memories. When Will turned 3, the age when Christmas really comes alive, we were still in the throes of trying to understand autism. Will certainly had no idea what Christmas was, but I pushed forward with Christmas plans anyway as if he had no diagnosis. I did the same the year after that. It was a disaster. It took some time for me to realize and accept that my vow to not squeeze Will into a box meant I could not fit our Christmas in a traditional box. I'm mostly at peace with that now and enjoy the holidays so much more. We don't have any traditions. Have you ever heard the saying that autism is consistently inconsistent? It's true. We don't know what each day is going to look like much less what life will look like once a year when Christmas rolls around. An activity Will tolerated or enjoyed one year may be completely intolerable the next year. No traditions means no expectations which means no let down for anyone. I always make a calendar of activities to try. If we do it, great! If we don't, no big deal. And if we find something both boys really love, we may do that one activity ten times throughout the month. This year, both boys loved driving around to look at Christmas lights. Will stared out the window and smiled in wonderment while Andrew narrated everything we saw. It was simple and perfect and imprinted a sweet memory. When we are with family, we set out gifts and tell Will he can open his gifts when he is ready. There is no expectation to open them with everyone. Getting a picture of everyone joyfully opening presents or giving the giver of the gift the pleasure of seeing him open it is secondary to his comfort. In years past, he has opted to wait until everyone has finished then open his gifts. This year, he wanted to be present with everyone but was too overwhelmed to open gifts at the same time, so he wanted me to open them. You get the idea. We have learned that all the expectations just aren't worth it for our family. As Andrew gets older, I can see us establishing a few traditions because he is fully embracing the Christmas spirit. I'm excited to see what we come up with and will strive to still keep it simple. The boys may not have the exact memories I have, but I will do everything I can to make it just as sweet in a way that makes sense for our family. As we move forward into 2018, I'm hopeful for a series of new beginnings. Will has gone through, and this month will continue to go through, a lot of changes. All of these changes we hope will lead to a better quality of life for him. More than ever I am resolved in my refusal to accept that there is anything inevitable in Will's future. We will keep loving him and fighting for him and will never give up on him. For myself, I will continue to fight each day to get healthier and stronger. Yesterday, as I was driving to Will's feeding clinic, I was able to see the sun rise over the lake. It was a great way to usher in the new year and be reminded that God's mercies are new every morning. Thanks for continuing this journey with us and Happy New Year! "So keep'em coming these lines on the road And keep me responsible be it a light or heavy load And keep me guessing with these blessings in disguise And I'll walk with grace my feet and faith my eyes" Faith My Eyes, Caedmon's Call
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I had another panic attack about a month ago. It wasn't the first and it most certainly won't be the last, but it was the most debilitating so far. It felt like I had just finished a hundred cups of coffee. My heart was racing and I couldn't breath. I thought I would be sick if I could not get home and lay down. I have been told a lot lately that I always look like I have it all together. I'm certainly not faking anything in front of you all, but I want you to know...I need you to know, I don't have it all together.
There are things about our life with autism that I have touched on in this space but never discussed in detail. Out of protection for Will, because I didn't want to explain it to everyone and because I didn't fully understand it all myself. Now that we are on the other side of some unimaginable moments in this life, I'm starting to process it all. I am unfolding all of this now as part of my healing process and because I know I'm not alone in my experiences. It's important that when we are able, we talk about the hard stuff. From the time Will was two years old, he has been what is called "aggressive" in the autism world. He was not only physical during meltdowns but really anytime he was the least bit frustrated. Every day for the next two years, Will would aggress toward most people in his life but mainly me and Matt all day long. I struggled to connect with him for the longest time. I knew he couldn't help himself, but that did not stop my heart from breaking and it didn't make the bruises on my body hurt any less. I have had a concussion, whiplash and the wind knocked out of me. I'm surprised my nose has never been broken. I have been kicked, punched in the throat, head butted, had fistfuls of hair pulled from my head, scratched, pinched, bitten and slapped. You cannot imagine the despair I felt when Will punched me in the face for the first time. He was just three years old. When Will was really worked up he would throw anything he could get his hands on, flip tables and knock down every chair in our house. He was like a tornado whirling around the house, and we were running after him dodging the things thrown in our path. To this day, we have very little furniture in our house, no lamps, and only a bed in his room. Can you imagine? Your own sweet baby using those perfect little hands and feet to leave scars on your body? It wasn't until much later that I realized I have a scar on my right hand in the shape of two tiny teeth marks. My forever reminder of this time in our life. After Andrew was born, life became much harder. Will was jealous but with just ten words in his vocabulary and struggling to process emotion, he only knew one way to express his jealousy. At the time, Matt was not working from home. My parents had already moved here and were helping as much as they could. Sometimes I would call them at 6:30 in the morning and tell them I just couldn't do it today. They were on my doorstep in a matter of minutes. There were days though I had to do it alone. Because Will was so destructive, he could not be left alone for one minute. One of the things he hated most was when I would breastfeed Andrew. So, I would sit on the couch and feed Andrew, covering him with my body and tears streaming down my face while Will kicked me in the back as hard as he could. I rarely put Andrew on the floor for his safety which is why he most likely did not walk until he was 16 months old. I always say the worst parts of autism robbed Will of part of his childhood. They also robbed Andrew of his infancy. I am part of a club almost sworn to secrecy. A club full of parents who don't talk about this side of autism. This is the type of behavior that makes all the mothers on the playground grab their kids and scatter. We don't want people to be scared of our kids, to remove their kids from ours kid's presence. The aggression often defies common parenting logic and it's too exhausting to explain. We are too weary to deal with the blank stares that come when explaining an episode and honestly from running through the one million reasons our children are struggling with behavior. Not all children with autism are aggressive, so we can be isolated even within that world. It's an exhausting and terrifying life, yet we remain silent because the aggression is often too much for other parents, teachers, doctors and family members to understand. I didn't want anyone to know and really didn't want to admit to myself how much I was struggling. As hard as those years were for me, I cannot fathom the intensity of the battle raging in Will's little body and brain. No child wants to do those things. The pain and struggle were not about me. And, if I stopped to examine how the behavior was really affecting me, I was afraid I wouldn't be strong enough to keep giving Will the help he needed. Now that we are through the worst of Will's aggression, my body and my brain are finally waving the white flag and telling me it's time to get some help. My doctor agrees I need to be evaluated for Post Traumatic Stress Disorder. I flinch when people touch be unexpectedly, and I still draw back when Will tries to hug me around the waist. I struggle around loud noises and sometimes have angry outbursts for no reason. So, I'm here to tell you it's ok to take care of yourself. It's not weak, and it's not selfish. Let's talk about our kids. The good, the bad and the ugly. For those of you who don't lead this life, show grace to the parents who live this daily and fight for the kids that so many have deemed hopeless. Don't pull your children away and please don't pull yourselves away. All any parent wants is for their child to be happy and loved. Ask how you and your children can be a part of the solution. You don't have to understand the intricacies of behavior analysis. All you and your children need to understand is that we are all working on something. I recently attended my first PTA meeting on the same night that Will's elementary school was holding a science night. As I sat in my car after the meeting and watched kids and their parents pour into the school, I had a fuzzy sense of nostalgia. I remembered all the events I attended at my elementary school like holiday programs and my brother's Boy Scout derby races. I loved my elementary school, and I loved nights like these. A bit unexpectedly, my nostalgia faded and everyone seemed to slow down, the color dimmed and it felt like I was watching everyone from behind a wall of glass. I felt boxed out, completely separate from all of these parents and their excited children. All I could think about was Will wasn't there. He's missing out, and life is just passing us all by while we sit and watch from the window. Will isn't ready for that type of event. The confusion of going back to school in the evening, the break in routine, the sensory overload, and complex social skills needed to navigate that event were all just too much.
I let myself despair a little. Would he ever be able to attend an event like this? The answer is an unequivocal yes. It took me a few minutes to get there, but I found the strength to tell myself yes. The scene in front of me sped up again, and I was left to reflect. School has been an overwhelming success so far. Will's teacher increased the difficulty of his work in the first month because he was completing his work so quickly. He is spontaneously using words and phrases we've never heard before. He is making connections with all of his teachers, and his anxiety has reduced dramatically. There are always places I can push for more, but overall Will is adjusting well. So much has happened since the start of school, events I've attended and little stories people have shared with me, that has allowed me to glimpse the bigger picture in all of this. The pieces are always present but there are moments when those pieces of Will's life weave together and reveal something so clear and beautiful. Will and I are already doing some things at his school that haven't been done before, good things that are hopefully paving the path for other children with special needs. Will's personality and energy have already won everyone's hearts. In just two months at school, he is proving that despite his struggles his capability matches that of his typical peers. I recently attended an evening out for moms of special needs children that was hosted by Hill Country Bible Church and a reunion for a ministry at my church that hosts weekly meetings for first time mothers to connect. The group of mothers I was with formed the playgroup that I am still friends with 6 years later. Both of these events allowed me to spend time with incredible women who have greatly impacted my life, women that are only a part of my life because of Will. We are still meeting up with our friends from our magical year of preschool, and I could not be more grateful to Will for bringing those kids and their families into my life. One of my friends from this preschool group recently shared with me that her son has a classmate this year with autism. After many days of this classmate leaving the room and all of the kids thinking he was in trouble, they finally learned he had autism. Her son came home and told her that his classmate wasn't in trouble and he was special, special like Will. I did not get emotional in front of her, but I did later when telling Matt because here's the thing, I realized at that moment how big and pervasive Will's impact has truly been. For four and a half years, Will has had 40 hour weeks learning the skills necessary to function and while those skills are so important, his ability to learn them are not what make him a contributing member of society. What makes the world go are all the things that make each of us interesting and the special things that we each bring to the table. I mean the really unique, inherent qualities we each possess. Somehow, someway Will's presence is big and bold. He leads without trying and imparts gifts with no strings attached. This life is hard. It's hard for Will. It's hard for us, and it's hard for Andrew. These moments of clarity, though, show our family we are not alone in this journey and they provide hope at times when we need it most. We are so blown away by the sheer magnitude that is Will. So yes, this capable, marvelous boy will one day attend a school event. In the grand scheme of all that he has already accomplished, a science event will just be icing on the cake. When I was nine, I woke up one morning to find my mom unexpectedly packing. She told me, my brother and my sister to choose a couple of special things to bring in the car with us and that we would be leaving in a couple of hours. A voluntary evacuation order the day before had turned into a mandatory evacuation that day for Hurricane Andrew. At that time, evacuation plans were not as extensive as they are now (although they still aren't that great) and they did not automatically turn the freeways in one direction. It took us all day to go 30 minutes down I-10. The best we could do was stay at my grandparents house and hope we would not bear the brunt of the storm. My parents put us all to sleep in my grandparents living room and even though they thought I was sleeping, I watched my parents and grandparents follow that huge, swirling red mass moving on the television screen eventually witnessing their collective sigh of relief as the hurricane turned at the last second and headed toward Florida.
Thirteen years later, Hurricane Rita came barreling through and once again my hometown was ordered to evacuate. There was no turning this time and my hometown, where my parents still lived in my childhood home, took a direct hit. My parents traveled north to a relative's lake house because Houston was gridlocked and they hoped it would be the safest place they could go. Rita went straight north and over the lake house. My dad would later tell me it was one of the eeriest experiences of his life. He said the tall east Texas trees were practically bent at 180 degrees from the force of the wind. All of a sudden everything froze as the eye passed over then the trees bent 180 degrees the other direction. They were without power and water for days before they could get out and travel to me in College Station. We lost all of the trees in our front yard, the brick chimney fell through the roof and my dad had to pull unimaginable things out of our pool. Three years later, my hometown took another direct hit from Hurricane Ike. Still weary from the last hurricane, my parents stood in my Austin living room and watched the hurricane make landfall right over their home. When my parents were finally able to get back home, it was like entering a war zone. Our home was shockingly unharmed but my beloved Crystal Beach, a place I visited every summer during my childhood, was gone and many people suffered extreme damage. My parents were displaced for months. It took years to recover and a lot of help, but my hometown, my beloved beach and so many people I love rebuilt their lives. The people of Houston, Rockport, Corpus Christi and once again my childhood home, which is being pummeled by Harvey right now and will see the worst of it tomorrow, will also rebuild but will need help doing so. Many of us who do not live along the coast will never experience the aftermath of a hurricane. The unpredictability of any natural phenomenon can lead to unimaginable loss. No one is ever really prepared for anything like it. Please consider finding a way to help those affected by Hurricane Harvey, many of whom never prepared or expected to be in this situation. Matt and I have donated to the Hurricane Harvey Relief fund through The Autism Society of Texas and the Austin Disaster Relief Network. The Autism Society's fund was especially important to us because we cannot imagine the affect of displacement, disruption to routine, and chaos would have on Will. To have an organization looking out for us and providing specific needs would be so welcome. There are a host of other organizations that are providing direct and specific help and support for those affected by Hurricane Harvey. There are so many things going on in the world that require our attention, and we have to make decisions on which cause will receive that attention and funds. I write about and promote this one because I feel we have a responsibility to the communities around us and because it's personal. In the days and months to come, we should all be looking for new opportunities to help no matter how small. We are in this together. We finally made it to the night before Kindergarten, the milestone we have been working toward for the last four years.
This moment is bittersweet. I think I'm more ready than most Kinder parents who are sending their first born off because I've been placing Will in the hands of strangers since he was two. He was just a baby when I handed him to his first therapist and had to turn and walk out. It feels a little strange to see other parents upset, not because it's wrong but because I already experienced that mixture of hope and emptiness a long time ago. I've been so grateful though for the many experiences we've had recently that have helped Will be the best Will he can be going into Kinder. It's a strange time for Matt and me as parents because we don't find ourselves wondering if we've prepared him enough for this day, cycling through memories of his toddler years and trying to assess every moment to make sure we made the most of it. Will was robbed of toddlerhood by the worst parts of autism, the kind that didn't allow him to live fully. We were robbed of that time with him because we didn't know how to connect with or help him. I think Will would agree that we never want to go back. I do find myself wondering if I got him into therapy early enough, did I put him with the right therapists, should I have considered alternative treatments? Would he be able to communicate with his peers more if I had done things differently? Did I do everything right? The "what ifs" are mind-numbing. Hindsight is everything but changes nothing. All I can do is pray that those experiences, good and bad, weave together to form something beautiful. I think Will wants to be excited about the first day but seems really nervous. School was really hard for him last year and even though he did so well, I think it's overwhelming for him to pull together the emotional energy to socialize and focus. There are so many life rules to remember in just a single interaction for him. There are a lot of unknowns ahead and still many barriers to break down in a public school system that has a pervasive problem of dismissing special needs students. Will has an excellent teacher who I think will prove to be a phenomenal advocate for him, and from what I can tell, a school that has so much potential to be progressive in how special needs students are educated. What I do know is my big boy is sweet, funny, talented and a natural leader. He's as quirky as they come, and I love most bits of those quirks. Entering school is a huge next step for Will. While complicated and often frustrating, he is known for exceeding expectations and surprising people in the best possible way. There will be ups and downs because Will needs to keep things interesting, but he has yet another team of people around him this year that believe in him, who I know won't emphasize what he can't do but rather all the possibilities. And trust me, there are plenty. Happy first week of school everyone! 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." 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. Awareness and acceptance...two things I've always struggled to understand during autism awareness month. They mean different things to different people as we prioritize their meaning based on our own experiences. It's fitting that this month Will is undergoing his re-evaluation through the school district where we are subjected to parent questionnaires that ask questions like "Is your child odd? Is your child strange? Does your child do strange things?" It baffles me that such absurd, subjective questions still persist in 2017. How can acceptance happen when we are still asking these questions?
Recently, I had the privilege of babysitting my best friend's kids. She also has a child with autism. As I sat with them in the early morning hours watching cartoons, my best friends daughter joyfully jumped all over the living room and squealed during her favorite parts of a cartoon. Her brother and sister did nothing. They did not look at her, they did not ask her what she was doing, they didn't ask me what she was doing, they were not scared, they did not say it was strange, nor were they distracted from watching the cartoon. Why? Because to them, this life is normal and it's a good life. I've been reflecting on Will's experience at preschool this year as more and more stories flood in from the therapists who join him each day in class. There is the boy who could talk to Will for hours even though Will rarely says a word back, the boy who watches how Will is playing with a toy then joins him and narrates their play, the girl who exuded joy because Will chose her during a class game, the group of boys who follow Will around the playground and copy him in an attempt to connect, and then there is sweet M.E. (initials to protect identity of course) M.E. is Will's first friend and by that I mean a child who chose to be his friend without any previous connection through our friendship with the parents. From day one, she was ready to help in whatever capacity was needed. She studied his therapists and began mimicking how they spoke with him and using behavior strategies that most adults have a hard time learning. She learned what games he liked and asked his permission to play. She learned when to give him space and that it was okay to communicate that she needed space. Not a day has gone by that she has not made an attempt to connect and communicate. Their friendship has had its ups and downs as Will learns to navigate the social complexities of friendship, but M.E. has not wavered. Will has hit, kicked and bit her yet she still pursues his friendship. You may be thinking what kind of mother allows that to happen to her child and what kind of mother am I to let it keep happening? Her mother and I have a running dialogue. I am honest when I'm notified he has aggressed toward M.E., I make sure both M.E. and her mom are okay and we make decisions on whether or not they need a break from each other. Is M.E. a hero because she takes pity on and has compassion for the special needs kid despite his differences? No, she is a special friend who doesn't see "differences." She sees a kid who breathes, eats, loves and hopes just like she does. Yes, he is different from her, but that's his normal. Their normals are different but she knows that makes neither of them less than or greater than the other. And she knows different normals can still be friends. Acceptance happens when we are aware that the things that make us different are beautiful and interesting and when there is an understanding that no matter how arduous, some of the best things in life are worth the effort. The first week of school for us is over, and what an emotional rollercoaster it has been! Last week, as I watched all of my friends send their kids to Kindergarten, I reached a deep level of sadness I did not expect. All of the pictures of sweet smiling children sitting at their new desk; well, that was my dream once too. For some reason it was like receiving the diagnosis all over again with the reality that life will be jarringly different than anything I could have ever imagined for my child or myself. The pictures and first day stories were glaring reminders of what was not to be. I'm ashamed to say it was a difficult week. While it was a human reaction, it was selfish and unfair to my friends and to Will for me to feel that way. I'm learning that when something permanently alters your life or the life of someone you love, grief is forever there. It's cyclical, and we all have our own personal triggers for that grief. I'm also learning that while it's ok to pray specifically for changes in Will that will lead to a fuller and happier life, many times the more important prayer is a shift in my heart. My circumstances may not change, but the way I feel about them and act on them can. Thankfully, I was in a much better place when I sent the boys off to school on Tuesday. As many of you know, we opted for an alternative educational plan for Will that is a blend of Mother's Day Out Preschool, therapy and homeschooling. We were all excited to get started, but I was nervous because this is a new situation for everyone.
The first day was a little tough learning new routines and rules but Will's behavior was manageable, and he was still able to function pretty well throughout the day. Today though, well today he rocked it. He participated in everything including all of his academic centers and even did some of his math work independently. He followed instructions, sat through circle time and did his first science experiment. He sat through his entire music and art classes and played appropriately with toys and on the playground. His specials teachers were amazed by his behavior. Will's teacher spoke to the class on the first day to let them know what they might expect from Will and how they could be great helpers. They rose to the occasion and were on hand anytime Will was upset to ask if he was ok and what they could do, and they would seek him out purposefully to play. To the school that rejected Will because they implied he had no potential, to the therapist that said there was nothing else that could be done, to the teacher who implied I was in denial, and to the schools who believe children with disabilities don't belong with their typical peers...today, Will claims victory. I am not a spiteful or vengeful person. I say these things because there is truth and honor in them. I've known since Will was still snuggled in my belly that God has a magnificent plan for him. Today, a small piece of that plan unfolded before everyone's eyes. We still have a long way to go, and I know there are more tough days ahead but today this little boy bathed in glorious light. My life has always been easy. I have never been great at any one thing, but I have always been good at a lot of things. I grew up privileged, not rich, just privileged. I have never wanted for food, clothing or shelter or worried that any of those things would disappear. My parents were supportive and present. Going to college was never a question, and it was fully paid for by my parents. I married a man whose school was completely paid for, and we began our marriage debt free. We are very aware that we stand on the shoulders of those who went before us, worked hard and created a legacy. I have also always been oddly aware, since I was a teenager, that my life couldn't always be this easy. I used to tell myself that one day the bottom would fall out, and I needed to be prepared for that.
The day Will was diagnosed with delays it did. At first because life as I had dreamed it was shattered forever. We picked up, we moved on and continue to build a new dream. Life became very dark again when I could not see the light at the end of the tunnel because my son, my baby boy, began leaving bruises all over my body and I didn't know how to help him make sense of this world. We mustered all of the emotional strength we had and found the help our little boy needed. Life is becoming increasingly stressful again as I'm realizing that this world is not as progressive and kind as I once thought. A month ago, we were at a restaurant in New Orleans when Will began asking for a banana, a word he does not pronounce correctly. I was a bit shocked to hear two adults in the corner of the restaurant making fun of him. Two grown adults making fun of a five year old boy. We have been on the receiving end of ugly and confused looks before but never outright ridicule. It was then that I realized the hardship he will face and how important my role is in making this world better for him. I have never asked anyone to put themselves in my shoes, to imagine how they would navigate a life like ours. Many of you will never know the daily, agonizing pain of wondering if your child will find a safe and welcome place in the future. Many of you will never hear someone tell you your child can't/won't/shouldn't do something because they don't fit into the majority. Many of you will never know the explosive joy from watching your child do something mundane. AND THAT'S OK. That is my life, and I will never ask you nor wish for you to walk in it. No matter how hard you try, you cannot completely feel the implications, positive or negative, of something that is not your experience. You may imagine it, roll it over in your mind but at the end of the day, you go back to your reality that is not that experience. I feel it would be super human to have that ability. But just because you don't experience it does not mean that it is not existing parallel to your life. Just because you don't experience it does not mean you don't have a stake in it. So now I implore you, be generous with your listening skills. Listen with your whole heart and mind when you tell each other about your lives. Be thoughtful with your words. If your words are not meant to edify, heal and contribute to the greater good, then please don't speak them. We are meant to be one body. We are meant to hold each other up. You know that old saying, you are only as strong as your weakest link? I believe that as the human race, we are as strong as our strongest link because it is the responsibility of the mighty and empowered to fight for the weak and at any given point, you could fall into either of those categories. I am a different mother and a different person because Will is my son, and I am much, much better for it. My role will change over time but the constant will be an unending desire to contribute my perspective in the hope of building a future where all people are valued simply because they are human beings. Let's all find our role in making this world a brighter and safer place. |
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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October 2017
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