I grew up in a small town in Southeast Texas, truly a world of it's own. I loved my childhood. My whole family lived there, and I saw them often. My best friends to this day I met in elementary school. I performed under the Friday night lights each week and hung out with my friends after football games. It was fun.
I would imagine growing up in my small town was not as fun for others. When I was 5 or 6 years old, I was sitting in the stands on a Friday night with my dad and my brother at one of my first football games cheering on the high school football team. Friday nights are absolutely electric in our small town. This particular night that electricity was more tense than exciting. That night was the first time a black student had ever played on our school's football team. We were surrounded by middle aged white men booing and yelling for him to get off the field. As a young child, I knew their actions were wrong. I made angry and disgusted faces at them, but what else could I do? My dad told me they were wrong and no one should ever act that way, and he told me to ignore them. I think we might have even moved away from them. My dad was protecting us. The same people who would yell such things would surely harm my dad or us for calling them out, and no one for miles would ever kick them out of the game for their actions. What should I have done differently? I don't know. On the first day of a computer course my senior year of high school, I sat next to a sophomore who introduced himself and proudly told me that in two years, he would be the first African American student to go all the way through the school system in our district. I stared at him blankly as I both tried to digest this new information and this 15 year old boy who spoke so freely about what it was like to be black at our school. He graduated in 2003. 2003. It took that long for ONE black student to make it from Kindergarten to 12th grade. I'm sure there were others that tried. I wish I had taken information from my conversations with him and done something with it. What? I don't know. When Will was a baby, we were visiting a Texas beach we've been vacationing at since I was a little girl. It's a small, family-oriented beach, but like any Texas beach, rules and decorum tend to be lost on some. As Will played in the water, I happened to turn in enough time to see a truck full of white men pull in front of a black man riding a horse and spin out their wheels so sand would fly in the black man's face. They were laughing. I was stunned. I didn't do anything because I was standing there with my baby. Could I have called the police? Maybe, but what crime would they assign to this? What could I have done while also protecting my son? Same predicament as my dad all those years ago, protecting my child. I don't know. My mom is hispanic, but she does not speak Spanish. I remember finding out my grandparents spoke fluently and asking my mom why she did not. Why did my grandparents never speak Spanish in front of us? My grandparents faced so much discrimination for simply being hispanic that they refused to let my mom and her brothers and sisters learn the language. They weren't embarrassed but the thought was my mom and her siblings could not be hurt by what they did not know. They could essentially fit in with white people better if they did not speak Spanish. My mom always made sure we knew where we came from. She often spoke of justice and kindness. She taught me that people are afraid of difference and scared of what they don't understand. I'm grateful for her lessons. My worldview has expanded since moving to a large city. It has certainly been broadened by having a child with a disability. I've met and become friends with so many people who aren't like me, and I've joined communities of people I might never have known without Will. I've also come to understand that the loudest voices in advocacy are the ones who have no direct stake in the outcome. It's time to take all these lessons learned and turn them into action. I want to stop saying "I don't know" and better understand what I need to do. I don't want to remain silent because I'm afraid of doing or saying the wrong thing or thinking that my voice doesn't matter in all of this. I'm starting here with my stories, stories that show that the color of my skin has allowed me to move through the world with ease. Stories that show systemic racism exists, sometimes subtle and sometimes not, but it's there. I realize I was not personally harmed in any of these stories, but I'm hoping as a white person it's important to say out loud that these things are happening. I know there is injustice in this world. I know the black community has been hurting for a long time and fighting this battle alone. I know there is work to be done. So, I'm listening. I'm researching. I'm ready to learn how to be a unifying voice. I'm ready to work.
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Well, we are one day into week 3 of our local stay at home order. The announcement triggered memories for me that are still difficult to revisit. It's been a long time since I was home with both boys all day. Those years were painful physically and mentally, and I reacted to possibly being forced to relive those days. The days where my body was a full time punching bag. The days where my mental capacity was overrun from moving from behavior strategy to behavior strategy trying to figure out what would make the frustration end, what would make the attempts to hurt Andrew end, what would make the screaming stop and what could possibly make Will happy. Except this time it would be with a 9 year old who is almost as tall as me, not a 3 year old. I couldn't bear the thought of enduring that for weeks on end. To my great relief, God once again went ahead of me, protecting Will and our family from my greatest fear and directing the course of Will's journey in ways I would never know to ask.
In January, we set in motion a series of appointments to change Will's medication regimen and some therapy goals. We noticed behavioral changes that we hoped were temporary. After a couple of months of observation, we felt strongly that the behaviors indicated his current medication was no longer working. The timing of our convictions was unknowing precise as exactly two weeks ago, we finally found the correct dosage, and some of the behaviors I most feared disappeared. Without those changes, I'm not sure we would have made it to the other end of this undamaged. The days are still long and hard. Will can't work independently at home yet, and still needs to be monitored most of the day. The level of attention he needs leaves Andrew, at just 5 years old, to do most of his work independently. I've been harder on Andrew when he misbehaves because I simply can't afford for him to act out. That's not really fair, and there will never be a perfect solution to that problem. Matt and I are taking this quarantine week by week, reviewing best practices and adjusting our schedules to make sure we support both of our boys to the best of our ability. We aren't homeschooling and don't plan to. Homeschooling is a choice made because it is the best choice for your family. Homeschooling requires years of refinement to create a program that fits your family. My best friend, who has homeschooled for years, wisely told me to choose a few goals I want to accomplish during this time and let everything I do revolve around those goals. We have also reaffirmed our family rules and refer to the often throughout the day to keep working on being better members of the team and honor the times we are being outstanding members of the Markum team. This time has already allowed us to observe skills we didn't know either of our children had, and we have watched them play together more than ever. Goodness born from an unexpected and difficult situation. Throughout this unique and harrowing ordeal we all find ourselves in, I haven't and still don't feel a sense of panic...lots of confusion, but not panic. It's taken some time for me to understand my reaction and wrap my head around why my feelings about this unique and scary event feel less pronounced than my feelings in the aftermath of 9/11. In the last few years, I've done a lot of work on my mental health. My early years with Will left me broken in so many ways because I was not fully equipped to handle what would be my life. I had to work through feelings of guilt, regret and deep sadness to fight my way to where I am and who I am now. I've cultivated tools to battle those feelings and find joy even when it seems there is no joy to be found. Improving my physical health was the first and most important step in improving my mental health. I still work with a therapist who helps me sort through the whys of my confusion and anger and has helped me shape who I want to be going forward. I am a believer in the grace and mercy of a loving Savior, and my faith sustains me. I absolutely still have bad days, but I am equipped to rally time and again when faced with adversity. As a parent of a child with autism, I live in crisis mode every day. Before this pandemic, during this pandemic and long after I will continue to face a very murky and unknown future. I know what it is to have something sudden and traumatic thrown in your lap and be asked to respond in a way that feels bigger than what you can manage. I know what it is to have your whole life abruptly change and suddenly feel uncertain about everything. Seven years ago, a doctor uttered eight words (Have you ever heard of autism spectrum disorder?) that would change my life forever. I was very suddenly forced to grieve what I thought was certain, leave it behind and stumble my way into a new normal. That is what you all feel now. The heightened emotions, the anxiety of a seemingly unending timeline, no clear vision of the future or really what the next day will hold. You are grieving the world as you knew it and being asked to embrace the scary unknown. It will be ok. The beauty of facing hard things is it forces you to examine the weight of the things you value and almost always results in a meaningful shift in perspective. This time will be hard, but once you wade through the harsh reality that simply lies on the surface, you will start to see deeper, and it's in the deep that you will find so much goodness. It's hard to believe right now, but your life will somehow be made better by what you are enduring now. As always, The Avett Brothers speak to my soul during difficult times. These lyrics come from one of mine and Will's favorite songs. I went on the search for something real. Traded what I know for how I feel. But the ceiling and the walls collapsed Upon the darkness I was trapped And as the last of breath was drawn from me The light broke in and brought me to my feet. There's no fortune at the end of the road that has no end. There's no returning to the spoils Once you've spoiled the thought of them. There's no falling back to sleep Once you've wakened from the dream. Now I'm rested and I'm ready I'm rested and I'm ready Yeah I'm rested and I'm ready I'm rested and I'm ready Yeah I'm rested and I'm ready I'm rested and I'm ready To begin. I'm ready to begin. February Seven, The Avett Brothers May we all not fall back to sleep when we get to the other side of this. May we all be rested and ready to begin again with new perspective. Be well friends. You are not alone.
It's hard to talk about what goes on behind the walls of your home. You don't want to embarrass your child. You don't want people to be afraid of your child. It's really hard to explain. You are not alone. Somewhere, someone knows the pain of the streaks on your face, the ones made with fingernails and the ones made from tears. Someone knows the pain in the bruises you couldn't cover up. Someone knows you feel like you just ran a marathon. You are not alone. Somewhere, someone knows you are expected to hold it together for all the other people in your home. How can you be a good spouse or a good parent to all of your children in the midst of agony and defeat? Sometimes you aren't. That's ok. But most of the time you need to be, and it's really, really hard. You are not alone. Somewhere, someone knows you have to walk out of your house with a brave face and do all the things that life requires; school pick up, sporting events, dinner with friends, a job, walk the dog and so on. Sometimes you do all of this without crumbling, and sometimes little pieces of you fall away with each thing you have to do. Sometimes, you just sit on your couch. That's ok. You are not alone. Somewhere, someone knows you just apologized for what feels like the millionth time. You apologized for your child's behavior, for missing a meeting, for being rude or forgetting something. Most of the time people are forgiving, but sometimes they are not. You don't want pity. You just need a good dose of empathy and a lot of understanding. You are not alone. Somewhere, someone knows you live in isolation. Sometimes it's physical. It's not safe for you or your child to go out in public. Sometimes it's emotional. No one understands this life. Sometimes it's mental. One scroll through social media and you realize everything your child is missing out on and everything you aren't experiencing as a parent. You are not alone. Somewhere, someone knows that despite everything, you can and you will put one foot in front of the other. You will trudge through the despair. No parent was made to do this. You do it because you have to. You do it because your child is worthy and love leaves you no other option. You are not alone. We will keep climbing together and hold each other up. Cleaning out my closet today, and I came across a box of pictures and mementos from Will's infant years. All things I can attach to the years dubbed "before we knew." What a confusing and strange life this is. To look back at those things and know what it felt like to wonder what his life would look like and to be here now and know all the heartbreak.
The last few months, behaviors resurfaced that we thought we left behind us, leaving us on the precipice of change for Will. We are waiting to see what changes to his regimen need to be made and if those changes to behavior strategies and medication are successful. Will has been on anxiety medication since he was four. You would think by now I'm used to giving my child an anti-depressant every day. I'm not, and speaking the name of a new medication is still difficult. I know he needs it. I know his brain does not naturally produce what he needs to remain calm. I know he has compulsive behaviors that inhibit his ability to function in daily life. I know there are so many things about the world that make him nervous. And I know that the difficulty he has communicating causes panic. It's still hard. I will never get used to the side effects and the process of trying new medications. The adverse reactions that cause inexplicable rage, the shakes and profuse sweating, turning into a zombie, losing his little personality, falling asleep in the middle of the day. I've seen it said so many times that parents are lazy and don't want to deal with their kids so they immediately turn to medication instead of actually parenting. I can tell you that is a myth and a judgement. Most parents do not take medication decisions lightly. The interesting thing in this particular valley of behavior is that Will's language has continued to progress at a rapid rate, and he is more consistently showing us his sense of humor. Usually his language significantly regresses during intense periods of behavior. God's hand at work for sure showing us that our boy is in there. These are the things you hang on to, the same things that confuse you. Autism just doesn't make sense. We will get through this change. I don't know if I will look back eight years from now with less heartbreak, but I will certainly have more stories to tell about autism's wonder. One of the most common conversations that takes place in our house is between me and Andrew... “Why did he do that Mama?" "I don’t know, but he loves you and we love him. We are a team, and we help each other. We will figure it out.” Sometimes emotional exhaustion sneaks up on me when I least expect it. I teamed up with my best little bud to go on his first field trip today. Even though he was a little overwhelmed and tired halfway through, we loved spending all day together. However, I find myself still struggling a bit to find my place in Andrew's world. It's getting easier but as my second, his world was not my introduction into motherhood. I did not study and train to parent a typical child first. In fact, I had to shift completely away from any thought I had of what parenthood would look like. Any special needs parent will tell you that you grieve that life that lives inside your head, then you let it go and forge ahead loving the child you have for who they are with everything you have. And as of September 2013, that's what I did. Now, it often feels like I'm going in reverse.
I met another family on the field trip today who have a child in the special education program. I watched as they stayed close to his side, holding his hand most of the time, prompting him to do what the other kids were doing. I watched as he ate things off the ground during the class picture. I watched as he threw a tantrum during a short instruction time, throwing himself on the ground because the waiting was so hard. I watched as the aide that accompanied him was giving him reinforcers to help him work through the waiting time. I watched them leave a little early because the field trip was just a little too long for his overwhelmed senses. And it was strange because for the first time, I was the parent of a typical child watching the parents of a special needs child try to give him a normal experience amongst his peers. I was the parent whose child didn't need me to watch and prompt his every move, stressing about the unpredictability of the entire situation. I was talking to other parents, not paras. And with tears, I can tell you that while I was less stressed, I was also more uncomfortable as this parent. I am grateful that my experience allows me the ease to interact with families that may make others uncomfortable and that just maybe I can be helpful in an intense situation, but sometimes it does feel like I'm in a one man play constantly going back stage for a costume change. Always the same person underneath but being asked to perform a multitude of roles. I feel guilty about how hard I have to work to get out of my special needs mom head when the time calls for it. It's part of my identity. I can't shed it, but at times I do have to dial it back a bit for Andrew's sake. Their world will forever intersect, and honestly the goal will always be to show them that the most beautiful moments in life will be when their lives are intersecting. That said, they are different people who deserve to have their individuality nurtured. They each deserve their own character and life building moments, and they each deserve a mom who tries her best to lovingly guide them. I never want Andrew to feel that my role in his life plays second to my role in Will's life. It's a delicate balance I haven't quite figured out yet. Maybe I never will. Maybe being present and loving abundantly despite ourselves is enough. This week has presented a lot of opportunity to get lost in my head about the mother I thought I would be versus the mother I actually am. My mom never missed a beat. I'm sure there were so many things going on behind the scenes that I never knew about, but in my childhood eyes and in my memory, her ability to care for us was unmatched. My dance recital costumes were always the model of perfection, each sequin perfectly placed. Never too many sequins and never too few. Those costumes would hang in order of my performances in a perfectly staked out changing room for quick and easy access between numbers. Every Friday, I would arrive home from high school with my twirling uniform and accessories neatly laid out on my bed so I could effortlessly change and get back to the school for the football game. My brother, sister and I always met our fundraising expectations for various organizations, had the equipment we needed when we needed it and always completed the projects asked of us at school because my mom made sure of it. I can only remember one holiday that our house was not elaborately decorated and there was no delicious holiday meal on the table, and that was because my grandfather was in the last stage of a difficult battle with cancer. Even then, while my mom was in the hospital with my grandfather, my dad who only knew how to cook chili and spaghetti was in the kitchen trying to fill the gap and follow my mom's recipes to put some form of a holiday meal on the table. We of course helped, but all of our efforts together still couldn't match my mom. That's the kind of mom I thought I would be. That's the kind of mom I wanted to be.
This week I was walking down the Kindergarten hall and stopped to look at the bulletin board outside Andrew's class. Each child had an All About Me page on the board with their favorite things and a picture of their family. Andrew's picture was simply a drawing of us because I didn't have time to print a picture. Andrew attended his second cub scouts event today with no uniform because I haven't had time to get it. I haven't turned in Will's homework folder in the last two weeks because I simply forgot. Honestly, I forget a lot of things. I'm lucky if I get a few decorations up during the holidays and it's often poorly done. Sometimes it feels like just another thing to do; it means more clean up, more to keep Will out of, more to stop Will from putting in his mouth, most likely something breaking, and a possible meltdown from Will because the house looks different. Mostly, it's all because I'm too tired. But...while I'm not the mom I wanted to be, I'm always working to be the mom I need to be. And, I know my mom was doing the same. I'm grateful for the way I grew up, and I'm grateful for a mother who poured her whole self into us. Her selflessness allowed me to succeed. I realized this week that I have been harboring so much guilt for letting things fall through the cracks for my kids, for letting them be the kids whose mom can't get it together. In my mind, I put up a side by side view of my childhood versus my kids' childhood and while the two look drastically different, the same intent to build a family full of love, respect, humility, and self-worth is there. The same intent to promote happy, successful, servant-hearted children is there. We are just a bit messy y'all. Our family doesn't come tied up in a pretty package. We couldn't even if we tried. Pretty packages, disheveled packages, broken packages...all are worthy. Yesterday morning I watched my son walk into his school independently, meaning no one held his hand to keep him from running off into the oblivion. Three days ago he started reading. Last weekend, we took family pictures, and he was the only kid who followed our directions. Last week, he told me and my mom the time, reading it off a roman numeral clock. This past month he has started joking around, perfecting some killer dance moves, clearly expressing when he doesn't feel well, answering yes and no consistently (HUGE in the autism world), asking for snuggles and so much more.
I've been reflecting on a podcast I heard a while back where a travel videographer who has a son with autism described her son's interactions with children in other countries as a glimpse of what's to come in Heaven. Her son is verbally delayed and much of what he says can only be understood by those close to him; however, when he speaks his "gibberish" as she calls it to children with no knowledge of the English language, they just assume they can't understand his language. There is no judgement and no anxiety over how to play with someone who is a little different. A glimpse of Heaven for sure where it will not matter what language we spoke or if we used words to communicate at all here on Earth. Our words will surely ring out clearly and beautifully in praise. I know I cling to this hope. While there is beauty in this life with autism, and I know my son was perfectly made, I look forward to the day he is free of the anxiety that riddles his brain and the pain he feels when the words just won't come. I know many others who feel the same way, some who have never heard their child's voice. So I find myself wondering why all of a sudden I am getting this burst of victories Earth-side. Why me? My spiritual life is definitely not the model of perfection. It's not really about me though is it? This is part of Will's plan, a huge step in this difficult but glorious journey he is on. I feel it so deeply in my bones that this boy is going to have a supernatural impact on someone, something, the world? I don't know. I just keep praying that God would make him brave and give Matt and me the wisdom to guide him and his brother who is proving to us he will be his brother's partner in life. This kid is magic, and I'm so lucky to be along for the ride. Thanksgiving break 2018 has not been ideal, starting with a stomach bug for Will and ending in shingles for me. We are no strangers to adversity and have learned to take these bumps in the road in stride, but it was still hard to see Will so sick, and it was hard to send my boys off to my in-laws this morning while I stay home and rest.
Being home alone this morning has given me time to reflect on so many things I'm grateful for this year. I am grateful that Will is happy and healthy. Will's aggression has now reduced to almost nothing, he sleeps until a decent time, he continues to eat a variety of food (current favorites are pizza and quesadillas!), he is snuggly and loving, he is processing information at a much faster speed which cuts down on frustration, he is focusing better at school, and is generally a happy kid. I could not ask for more than a happy and healthy kid after so many years of the opposite. I am grateful for an exceptional teacher that teaches to all of her students' potential, and my sweet son's work ethic. Will is mastering targets at such a rapid rate in school that his teacher can barely keep up. After the break, his academic inclusion time will increase along with his goals. Will still requires a smaller teaching environment, but the academic gap is closing. I am grateful for supportive parents, friends and a patient and loving husband. I have been seeing a therapist to help talk through some of the more difficult moments of life but also to explore my doctor's concern that I have PTSD. My therapist recently told me that while I do have symptoms of PTSD, I do not meet all of the criteria for a diagnoses. She followed that with the fact that everything that happened to me should have led me down that road, but my own strength and my community of support saved me. My own strength though is not necessarily my own. My parents taught me to find it somewhere in me to keep putting one foot in front of the other, that dwelling in the enormity of your struggles is not the answer and that when your circumstances can't change, your attitude toward them certainly can. My parents answered my every cry for help on the days I would wake up sobbing that I just couldn't be with my kids alone that day. They were my calvary. Matt has taken every lashing when I've been unnecessarily angry, gets up with the kids in the middle of the night and early in the morning so I can sleep, forgoes free time so I can have it, loves us unconditionally and works hard so we are comfortable. Our friends accept us for who we are, don't punish us for canceling last minute, show interest in what life with autism is like and NEVER judge us. All of you, along with my faith and hope in Jesus Christ, saved me. (Please note that I understand not all mental struggles can be remedied by "pulling yourself up by your bootstraps," and I certainly don't mean to diminish those who need more to cope. We all cope differently and have different tools to do so. Each and everyone one of those tools is valid.) There is much to celebrate on this day of Thanksgiving. Life is rarely easy, but I'm thankful for the team of people who circle around us and lift us up. And, I'm thankful for the three turkeys in my home who keep life interesting and light each day so brightly, the sun barely has room to shine. "The Individuals with Disabilities Education Act (IDEA) is a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children.
The IDEA governs how states and public agencies provide early intervention, special education, and related services to more than 6.5 million eligible infants, toddlers, children, and youth with disabilities." (U.S. Department of Education) In 1975, President Ford signed the Education for the Handicapped Act (EHA), now called the Individuals with Disabilities Education Act (IDEA), into law. This law, for the first time, mandated access to a free and appropriate education for all children with disabilities. Prior to this law, schools were not required to education children with disabilities with many states creating and enforcing laws that said children with disabilities could not be educated in their state's public schools. Considered useless and less than human, they were kept at home or sent to institutions. When the EHA was passed, it was determined that an estimated 1.8 million children with disabilities were excluded from the public education system, many of whom could have gone on the lead full lives. Although individuals with disabilities make up 20% of the population, our family still lives a life drastically different than most. From the intense joy we experience to the extreme adversity, it's a life most won't understand. When you live in the minority, it changes your daily and global perspective. I find myself understanding that while I cannot fully experience someone else's plight, I can certainly relate to the complexities of someone else's situation and better evaluate their response to that situation. I now better understand that what may be perceived as a black and white issue is full of intricacies that deserve a closer look. Such is the case with the current immigration crisis. I have wondered lately how many people prior to 1975 who had no connection to or experience with a person with a disability said schools should continue to deny disabled individuals access to an education because it's the law, and we are a nation of laws. I have wondered lately how many of those same people might have said that a parent who lived in a state with laws denying disabled children entry to their school, who crossed the threshold of their local public school should receive the maximum penalty and have their child removed from their custody as a means of deterring anyone else from trying the same thing because well, it's the law and that parent broke it. Some laws and the people who make them are meant to be challenged. We don't have to go too far back in history to see that. The immigration issue (and I say issue because it is an issue that needs greater resolution) is really just the boiling point for an administration that has time and again proven that the good of the people are their last priority. I have watched as our current president has openly mocked individuals with disabilities, often publicly used "low IQ" as an insult and appointed a secretary of education who has no concern for teachers, students, public school and especially children with disabilities. Those are really just the actions that personally offended and concerned me. There are a myriad of other issues that are snowballing into a larger concern as well. Will lives among a community of people that have rarely been loved or valued in the history of the world. It disheartens me and worries me that so many are being given the opportunity to disguise hate and fear of those that are different as a love of law and God. The day will come when this administration goes directly after Will and his claim to basic human rights. It won't be obvious. It will come in small waves, reducing federal funding for special programs which in turn reduces appropriate training and the number of qualified special education teachers. Or possibly scrolling back specific federal rights that would swing wide open a door for states to spend money on special programs as they see fit. Please note here that Texas ranks last in the nation in special education already, so you can imagine how that scenario would play out. We are hanging on by a thread here in Texas only because of our federal rights. And one scenario that Betsy Devos already tried to introduce, a waiver program she specifically marketed to special needs parents. She said you can send your child anywhere and the government will help pay for it! It's your chance to get a more specialized program for your child! The reality is, most schools outside of public schools won't take our kids and they don't have to, so the program would have effectively promoted segregation into "special" schools and amounted to a reduction in resources at local public schools. It's a cleverly disguised and effective way to limit a special needs individual's exposure to society and a way of getting the riff-raff out of your child's school. Anyone who lives in the minority that isn't already fighting for their equal place knows their battle is coming. If you live in the majority and don't have to worry about a current or coming disruption to your life, I am happy for you. It's you who we need to stand up for us. Your words and actions matter the most. Instead of throwing the Bible at people and taking to Facebook to argue with each other, choose a cause and pursue it. Do you believe in a right to life? Great! Go out and volunteer at a pregnancy center that provides tools and resources to the underprivileged so they can parent successfully or provides them with a clear and loving path to adoption. Do you believe your child should be getting more out of public school? Great! Go talk to your principal about how to get your teachers more resources. Call your congressman and demand raises for teachers. Volunteer in the classroom. Do you believe countries should be taking care of their own people? Great! That's not a reality in war-torn or poverty-stricken countries. Change takes time. Sponsor a child in one of those countries. Volunteer your time or money to providing clean drinking water in those countries. Buy from companies that help individuals in third-world countries learn a trade that supports their family. You get the point. Leading small can enact big changes. We don't all have to agree with each other, but positive action in conjunction with opinion is part of human decency. You can't ever know what it is to walk in someone else's shoes. Anyone that expects that is demanding the world. But it's important to evaluate the details from every side, lend your ears to those who live differently than you and walk alongside your fellow man before condemning them to a life you wouldn't want to live. We are at a poignant time in history. Change is coming. Let's make it positive. The moment you meet someone you can call friend on your life's journey is exciting no matter how old you are. Our friendships play a major role in defining us, shaping our life whether it's for a brief period of time or a lifetime. You can never really know what road a new friendship will take, but I think there is a guarantee that each friendship will leave a mark on your heart. I met my three best friends thirty years ago. We met in Kindergarten, went through the awkward middle school years together, were in band together. Three of us lived together in college. And I slept on one of their couches when I started my first job. When you have been friends since Kindergarten, it is a beautiful and interesting thing to look back and see how God brought you together and how he interweaves your lives for his good. Laura, Kari, Becca and I have been through a lot together and consider each other family. Kari and I have something very intimate in common though. We both have a child with autism. I think back to our five year-old selves, learning the ropes in school and enjoying care-free time at recess, with no knowledge of the bumpy road ahead of us. While it was never something we would have asked to have in common, we are grateful to share the joy and sorrow that comes with autism. We get each other, and we get each other's families. We encourage each other in all the right ways and stand in for each other when needed. This part of the thirty year story of our friendship becomes more magnificent as it unfolds.
You don't stay friends with somebody for so long without having a million things in common and complimenting each other in ways that can truly only be described as divine, but God has given us opportunities over the last few months to so plainly see why we were given to each other all those years ago. Last week, we walked together through a heart-wrenching and beautiful week in my family's life, a week that will forever change the way my family functions and give Will a leap forward he so desperately needed. For the last four years, Will has eaten only five foods. Everyday, for four years, Will has eaten grapes, strawberries and Ritz wheat crackers for breakfast, lunch and dinner with bananas between meals as a snack and milk to drink. You may be thinking as most doctors do, what about protein? Does he eat meat or eggs? Nope, nothing but the food listed above FOR FOUR YEARS. Selective eating is a common symptom of children with autism whether it's a sensory issue or behavioral issue. Even though we knew Will needed more variety in his diet to function, we had no idea how we were going to get there. Last summer, Kari's daughter had tremendous success with an intensive feeding program through her ABA clinic . After her success, Kari mentioned to me that maybe we should give it a try because the ABA clinic was opening a new branch in Austin. You must understand that this type of feeding program is not offered anywhere in Austin. At the very moment Will had reached an age where we started to become concerned we would have to take drastic measures to feed him, my best friend's ABA provider, who offers this unique program, just happens to be in the process of opening a facility in Austin. We had low expectations, but what did we have to lose? We considered this our last hope. So, last Wednesday we showed up at the facility not knowing what to expect and clinging to the last flames of hope burning in our hearts. It was one of the hardest things we have ever done with Will, but we got our Christmas miracle. After years of living a just five foods, Will is now eating a variety of meat, vegetables, fruit and continues to try new things. On Tuesday of this week, we sat down at the table and had our first meal together as a family. It is all still so surreal. So, you never know where friendship will take you and all of the unique ways God will use you to work good in each other's lives. The friendship I have with these ladies is powerful and humbling, and it's mind-boggling that our story is only half written. This may have happened a different way or not at all if Kari was not in my life. I do know it happened THIS way because of a friendship that was forged thirty years ago. Our family, Will's life, is forever changed. |
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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