kindness – Cynthia Hilston – Author & Blogger

Facing Loss and Embracing New Possibilities

Loss. It’s a word we don’t want to hear, let alone experience. Yet we all experience it. We all know loss, not just of it. Some of us have known it on a first name basis for too many years. If we’re lucky, some of us know it only as an acquaintance for brief periods throughout life.

When I say “loss,” what comes to mind? Losing a loved one to death? Divorce or a tough breakup? Loss of a job, a friendship, a dream? Or maybe just all the socks that lost their mates in the laundry? Sorry, I had to throw a random joke in. This is a tough subject matter.

Chances are, if you’re lived long enough like me, you know loss intimately enough to define it, to know the emptiness it leaves in its wake, to know healing is hard, to know that moving forward after a great loss can seem insurmountable in the moment of grieving.

I was in a Bible study once where the question was asked: What do you think the saddest word in the English language is?

My answer? Hopelessness.

Whoever wrote that study agreed with me. Now maybe you have another word, but I’d suspect that hopelessness would be in your top ten most depressing words. Hopelessness and loss are often intertwined like a tight braid, held in place by an elastic of grief, anger, sadness, and denial.

Then where is acceptance, which can lead to hope?

My earliest memories of loss aren’t deep: a goldfish being flushed down the toilet, our outdoor pet bunny escaping and running away, attending wakes and funerals of people I didn’t really know.

For me, the loss of my innocence at an early age, something precious ripped from me, was the type of loss that affected me the most at the time. When I was eight years old, two boys in my neighborhood, barely older than me, sexually molested me. They had access to pornography. It wasn’t sex, but it was bad enough. I knew enough to know that “stuff down there” could cause pregnancy and AIDS, which had just come out as the latest big disease scare. For months, I thought I was going to die of AIDS and prayed several times a day to God: “Please don’t let me have AIDS.” Luckily, I told my parents what happened, and they went to the police. I stayed away from those boys, but it never went to court. No one was held accountable. Maybe worse than thinking I had AIDS was that it seemed like everyone at school knew my secret. Those boys told other kids. I remember feeling dirty and violated for years after the incident as I walked the halls, sometimes being asked, “Were you raped?” As a child, I couldn’t pinpoint terms like “dirty” and “violated” to describe the uncomfortable feeling of a slimy snake creeping inside me when people stared and asked rude questions, but I know now that was what I was feeling.

But I survived because of the kids who were my friends and because of my family. I had parents who loved me. I had a few good friends who stuck by my side, and as the years passed, the news of it died. Understanding more about “stuff down there,” I knew I wouldn’t die of AIDS. I stayed away from those boys as much as possible.

My next experience with a huge loss came when I was 15 and lost both of my grandmas within two weeks of each other. My dad’s mom had been battling cancer for over a year, and she lived in Kentucky, so I rarely saw her and wasn’t that close to her. While my dad and brother attended her funeral, my mom and I stayed home to be with her mom, who was in the hospital. We received the news no one wants to hear–the cancer had metastasized to her lungs (from a sarcoma on her leg the previous year), and there was nothing to be done. Even chemo would only give her a small chance. She was already 81 years old and didn’t want to go through that. Despite being given two to six months, she passed a mere two weeks later. She was at our house, so she died surrounded by family and didn’t suffer for long.

I had always known my life with my dear grandma. We visited her every Sunday after church. She had that warm voice that greeted us and those rosy cheeks and that beautiful smile. She always had candy in her purse and cookies on top of her fridge. She had her quirks from living through the Great Depression of watering down her shampoo, of saving a hundred plastic bags, and of using the smallest amount of batter left to make a quarter-sized pancake an eighth inch thick. She burned her pizza that tasted like cardboard, but her pork chops were marvelous. She spent every Thanksgiving, Christmas, and Easter with us. She went on numerous vacations with my family. She was special.

So how could I, at 15, understand what it meant to face life without one of the most important people? While she was still in the hospital, I wrote a letter to her, where I told her brave she was, how much I loved and admired her, and asked her to send me a sign upon reaching Heaven. She passed on a dreary early April day. The rain continued until the day of her funeral four days later. After we came home from an emotionally draining day, my mom called me to look out the window with her. Stretched across the clearing sky was a beautiful rainbow! I knew this was her sign to me! Just as soon as my mom and I saw Grandma’s rainbow, it faded. I had no doubts. I found comfort in that rainbow. Even though I would miss her dearly, time had helped heal the immediate stabbing loss. A scar remains on my heart, but my grandma and her rainbow would go on to create something miraculous.

I wrote her life story in a fictionalized account and published it a year ago. She has been my inspiration to write more books, to embrace what I call my heart’s song, my raison d’etre. Not only died my grandma give me hope and the possibility to write, but my daughter is named after her. Emma was a surprise child, not planned but welcomed and blessed!

Out of loss came immense possibility that became reality.

As the years went on, I would know the loss of a relationship with a boy who I once was in love with, but I would then meet the wonderful man who would become my husband and the father to my children, who I’ve been married to for 14 years.

We enjoyed several years of marriage where it was just the two of us. We got to know each other more intimately. We travelled to Italy, Hawaii, the Caribbean. We focused on our careers. We got a house together and made it our own.

The next step seemed obvious: children. I was in my late twenties. Everyone around me seemed to be getting pregnant, so I knew I was at that life stage when it was time. My husband, Erik, and I were ready…as ready as we could be.

Little did I know how hard our journey to conceive would become. Every month would come and go the same: hope that this would be the month we got lucky, only to flee with more tears and heartache at an empty womb. This trend would continue for the next two and a half years. My husband and I went through testing. They could find nothing wrong. We tried artificial insemination three times…nothing. We were told fertility drugs would only increase the chances slightly, so we held off. As 2008 drew to a close, we were on the verge of trying in vitro. Drained beyond panic and exhaustion at this point, I suggested we held off for six months and just tried to relax and enjoy life again. We had put so much pressure on ourselves to conceive that I was just done. With it being Christmas, my favorite time of year, I didn’t want to deny myself drinking some wine and the general fun of the festivities.

That Christmas was great. Pictures from the time show a true smile on my face, surrounded by coworkers, friends, and family. I stopped thinking so much about conceiving.

The New Year came. I was late. Of course, there had been a few months when I had been tricked before by this very thing. Why did early pregnancy symptoms have to mirror the ones I got when it was that time of the month? I knew the stabbing pain of loss from too many months of not conceiving, and I didn’t want to be tricked again. Why get my hopes up?

But I couldn’t wait. It was now five days past. In the bathroom at work, I took a pregnancy test. When two lines appeared instead of one, I thought for sure this was a dream. You can imagine my elation! Finally!

All those months of loss died upon receiving this amazing news. My pregnancy would continue as healthy, and I gave birth to a 7 pound boy right on his due date of September 10, 2009. Luke was a miracle baby, a baby so many friends and family, and my husband and I, had been praying for for years.

As Luke grew, we knew we wanted to grow our family more. The stresses of trying to conceive were no longer a problem because we knew we could do it. Luke was now a toddler, a happy kid who was walking and beginning to talk. A younger brother or sister would be great for him. As we wanted our kids close in age (2-3 years apart), we decided the time was ripe. On New Year’s Eve of 2010, I had a hunch I was pregnant and took a test. It was positive! The exciting thing was that this second baby would be due the same date as Luke’s birthday! We attended a friend’s party that evening, and I declined the wine. The other girls gave me knowing looks, two of whom were pregnant. We all squealed quietly.

On January 12, 2011, I miscarried. Sure, it was early…only six weeks in, but the loss of my baby hit me like a train. Loss of life is tragic, no matter how old. A mother carries her child in her for the first nine months. She and the child are literally a part of each other during that time. I think I cried more that day than I ever had. My prayers to save the child went unfulfilled. I was devastated. How could I possibly move on from this?

One thing I knew: I didn’t want to keep my loss to myself. Having a miscarriage is understandably a very private thing for many people, but suffering alone is daunting. I shared my experience with those around me, mostly other women from church and my friends. What did I immediately notice? How common miscarriages were. How many people related and understood what I’d been through. If it weren’t for these brave, strong women supporting me through this tough time, I wouldn’t have been able to heal. Of course, a woman never can forget her lost child, but with the support of friends and the passage of time, healing can occur.

My doctor encouraged me to try to have another baby after allowing my body (and mind) to heal for a month. Would you believe I got pregnant that first month? After the hardship of trying to conceive with our first child, there was no pressure. I had another healthy boy that November: Josh.

As my boys grew, life seemed to fall into a comfortable routine. I continued to stay home with Luke and Josh. The boys played together and were both generally happy kids. As Luke got older, however, we noticed that he wasn’t developing socially and verbally like other kids his age. We had already enrolled him in speech therapy soon after turning two, as he didn’t have many words. Seeing little progress over several months with therapy and Help Me Grow intervening in our home, it was suggested that I take him to a developmental pediatrician.

Luke wasn’t even three years old when we got the diagnosis: moderate autism with a speech delay. My husband and I sat there as the developmental pediatrician, a speech therapist, and a psychiatrist gave us the news. We were inundated with information in the form of tons of papers of what we should be doing as far as intervention, plans to move forward, what the diagnosis meant, and so much more that I couldn’t process it all.

I went home, determined to be proactive. I enrolled Luke in occupational therapy (OT) for his fine motor delays. Help Me Grow got us set up with the preschool in our city, and he would be receiving services there. We would continue private speech. I read through the information and tried to arm myself with knowledge, hoping that early intervention would make a difference. My son was still so young, after all. He had time to catch up with his peers.

Luke made progress, but it was slow. He, to this day, speaks in single words or short phrases to express his wants and needs. We paid a lady to come into our home to potty train him over a weekend, and it was successful…only to have that work undone a couple of years later when he regressed with no understandable reason why. We haven’t been able to completely get back to where we were with toileting.

While usually a happy kid, Luke has been prone to meltdowns, especially when overloaded due to sensory processing issues. Loud noises, crowded rooms, hunger, cold, heat, tiredness, and more can trigger a meltdown. When he was smaller, it was easy enough to pick him up and put him in his room until he calmed down.

As he’s grown, his meltdowns have gotten harder to control and more violent. He kicks, hits, pulls hair, throws thing, and pulls pictures off walls. We’ve had to remove the lamps and anything breakable from his bedroom. He is on a medication to help with the meltdowns, and while they are less frequent, they can happen without provocation. His mood can change like someone has flipped a switch. As his mother, it breaks my heart to see him like this, to know he cannot express himself like he wants to.

My biggest struggle is facing the loss of the son who I thought I would have. I will be honest. I hate autism most days. Look what it does to my son. As moms, we have these too-perfect dreams of what our kids are going to be like. Sure, we expect them to have some struggles and quirks, but a diagnosis like autism… Who expects that? I often rant and rail at God at the unfairness of it all. I have cried bitter, angry, dejected tears in the middle of the night or locked away in my closet because–let’s be honest–it’s not fair. Even yelling at God is prayer, however. Any communication with God is prayer. Knowing that helps. God can handle my anger.

Soon after the diagnosis, after a few weeks of trying to hold it together and be proactive, depression grabbed hold of me and pulled me down. I took out my anger and hurt on those closest to me. Sadly, from time to time, I have turned to this dark place because sometimes I just cannot take it. I feel unqualified, underprepared, unable to raise a special needs child. Did God really think I could handle this?

I have been through plenty of times of loss in my life, but those losses have either resolved themselves or have found a way of healing. This time, this loss is ongoing. There’s no end in sight. This is lifelong.

So what do I do? How do I choose to face this epic loss and embrace a new possibility? Hard truth: I embrace the loss of my picture-perfect dream and truly embrace the boy who is my son. Because he is my son. He is a person worthy of love and deserving of understanding. No diagnosis changes a mother’s love for her child.

If it weren’t for Luke’s autism, I would not have met many other precious people in my life. I have cried with other moms “who get it.” I have hugged and been their source of encouragement, and they have returned the favor. Other people have been strong for me when I couldn’t be. My parents, my church, my friends…they are the true heroes here, not me.

And God. I cannot understand why Luke has autism, but I believe God works good from the bad. My heart and mind have been opened by raising a special needs child. I believe I am more compassionate and understanding of others who have various diagnoses. I believe we all will go through some sort of diagnosis at some point in life. It’s all part of living. God holds us and sustains us through, often by using other people in our lives to carry us when we cannot walk.

Whatever loss you’re facing in your life, I ask you to take some time to try to see a new possibility in it. Every experience is a chance to grow, to learn something, to continue in hope.

That is a much better place to be than alone and suffering in your loss. Loss is just as much a part of life as gain. I believe there is much to be gained in loss–hope for tomorrow.

Like what you’ve read? Please subscribe to my blog, where I post a new blog every Friday, including book reviews.

My new novel, Lorna versus Laura, is available for only $2.99 here.

My first novel, Hannah’s Rainbow: Every Color Beautiful, is available for $3.99 here.

Small Group Friendships

If the title of this blog reminds you of cliques from when you were in school, stop right there. While I can feel that vibe, this is about the opposite. This, my friends, is a blog not just about friendship but about small group friendships.

What do I mean by that? My definition of small group friendship is based on a cluster of people who come together regularly because they have a common purpose, goal, or interest, and they continue to meet often over the course of several weeks, months, or years, getting to know each other more deeply than just by the initial thing that brought them together. In time, these people become true friends, and while members of the group may get together one-on-one, the group as a whole gets along so well that they love spending time all together. These groups can become accountability groups, groups that hold you up through hard times, groups that pray for or with you, groups that go out for a drink with you or a good time.

I have a few of these groups, and I’m going to write about my experiences with them and how these groups of amazing individuals have enriched my life. I hope you have at least one group like this in your life, and if you don’t, I encourage you to find or create one.

The first of such groups I am a part of is a group of women from church who have been meeting regularly since early 2011. We get together most Mondays (with summers off) in a room at church and do different faith-based book or video studies together. The discussion these studies generate often leads to pondering some deep life questions, to pulling at a few heartstrings, and to exploring our connection with God and each other. These ladies have become like sisters to me. While people have come and gone over the years, there is a core group. We have hosted luncheons at our houses. We have done outreach and small missions. We have shared laughter and tears. It’s the place that feels like coming home, you know? It’s definitely a heart group more than a mind group, and that’s what we love about it. We can be authentic, vulnerable, and open without feeling judged. Sometimes these ladies are like therapists to me! When we haven’t met in a while, I feel that gaping hole in my life. Going to this group feeds my soul.

The next group that comes to mind is also connected to church, although the dynamic has changed over the years. Back in 2008, a few other young married couples joined our church. (We are not so young now–haha!) Only one of the couples had a kid. Since then, we have all had kids. (The kids now outnumber us!) We began meeting for adult Sunday school, having formed a group for people our age. At the time, there was a need for a group like that. Circumstances have made it next to impossible to meet for Sunday school any longer, but we still do things socially about every other month. It’s often the case that the guys do their own thing and the girls theirs. As couples, we try to do something annually, but getting sitters is a challenge. The girls always go out for our birthdays, even if it’s just for ice cream. (And who needs an excuse to eat ice cream?) As moms of young kids, we often talk about our woes, worries, and joys of motherhood. We get it. I am grateful to have this group of other moms who are at the same life stage as me, and that despite the craziness of our lives, we have stayed friends.

While there are other groups in my life that are important (MOPs–Mothers of Preschoolers, a Thursday morning Bible study, a special needs parents group, etc.), I won’t go into all of them. Some groups are still fairly new to me, so I don’t feel I’ve developed a deep connection with them yet, even though those groups serve their purposes and are wonderful in their own ways. Some groups don’t meet often enough for me to really feel a huge connection. Other groups have come and gone (another moms group I was in at church for years, a short-term special needs Bible study, a Saturday evening church group, etc.). While I am a stay-at-home mom, I am still quite busy with running the house, cleaning, cooking, shopping, taking care of three kids, managing expenses, and more. I am not just a weekly blogger, but I am an author and a writer.

Which brings me to the final group I would like to mention: my writers group. Of my groups, this is the newest. I’ve been attending a writers group at the local library for just a little over a year. We meet every other Saturday afternoon for a few hours. We read and critique each other’s stuff, chapter by chapter. This might not sound like a lot of fun to some of you, especially if you don’t enjoy reading. But writers are also readers. We are like-minded people, and I have developed friendships with most of the people from the group. Like my other groups, people have come and gone, but there is definitely a core. The ladies from the group have recently started meeting for lunch. I’m getting to know one of the girls who’s my age on a one-on-one basis as well. This group is awesome, and as a writer, this group is immensely important to me. These people who “get it” in terms of writing have helped me become a better writer. It’s thanks to them that my whole second book was edited and able to be recently published in the fixed up format it’s in. More than their writing and editing abilities, however, is the value of their friendship. I love this group and wrote about the benefits of joining a writers group here.

So, there you have it. I’ve shared examples of my small group friendships with you and why they are vital to enriching my life. Are you part of at least one small group? If not, I encourage you to find one. Churches can provide a great source of support groups. Libraries often have book clubs and other groups. There are national groups like MOPs for moms.

If you don’t have the time, ask yourself why and try to make the time. I believe we make time for what matters. Maybe you aren’t comfortable walking into a group of strangers. Get a few of your good friends together and form a group. Make it about something you share in common and make it a point to meet regularly. Hold each other accountable to that. We all have busy schedules and can come up with a million excuses for why we haven’t gotten together with our friends. At the end of your life, you won’t be regretting that you didn’t work enough, keep your house clean enough, or make enough money. But you might regret not spending enough quality time with people. People matter. Small group friendships are just one way to keep that bond going.

Like what you’ve read? Please subscribe to my blog, where I post a new blog every Friday and a book review the second Friday.

My new novel, Lorna versus Laura, is available for only $2.99 here.

My first novel, Hannah’s Rainbow: Every Color Beautiful, is available for $3.99 here.

Cultivating an Attitude of Gratitude

Ugh, do I have to wake up?

Waking up is vastly overrated. The pillows, the blankets, the soft curve of the mattress against my body, these are calling my name, beckoning me like a lullaby.

But if I’m honest with myself, I’m lucky today. I actually didn’t wake before my alarm on my phone. My kids didn’t wake me up.

Hey, I can get dressed, wash my face, and brush my hair in five minutes of silence!

Small blessings…

If I sound sarcastic, I don’t mean to be. There are those sunny people who would tell me to be happy for another sunrise, and while part of me wants to show them where they can shove their bright remarks, the better part of me knows they’re right.

Besides, you can’t hold too much against me right now. I haven’t had my coffee yet.

So, it’s the start of another day. In the hour or so before getting out of the house, I need to feed three young kids breakfast and get them dressed and ready for school (with the exception of my daughter, who is only one). Oh, and I also need to feed myself somewhere in there. You’d think this wouldn’t be so hard, but that’s a lie many young moms tell themselves to feel better. Kids are disagreeable by nature, little people designed to push Mommy’s buttons. I admit I am not the most patient person on the planet, but after several mishaps in less than an hour, sometimes I’m ready for the clock to read 8:00 PM and not 8:00 AM.

But I push through my little aggravations…usually. I get the boys off to school, and it’s to the Y to work out. Working out is a great stress-reliever, but you know what comes to mind about the Y for me? There is an older gentleman who works at the Y I go to. He’s a custodian. It’s his job to clean toilets, to scrub floors, and to unclog drains. Yet he always, always smiles at me (and everyone he passes) and says, “Hello, how you doing?” He’s the type of guy you can’t help but smile back at and say hello, even on the tough days.

So, what’s he got that a lot of us don’t? Can I have your seeds of happiness and plant them inside of me, sir? I don’t like being miserable…and yet, I do it to myself. I choose to complain many, many times throughout every day about mostly trivial things: red lights, running late, being behind a slow driver, my son arguing with me, having to turn around and change a poopy diaper after just doing so…

Yet there are bigger things that lie just under the surface. Am I a good mom? Am I doing enough for my kids? I don’t feel equipped to be the mom of an autistic son. Who thought I could handle this? What about my dreams, my ambitions, my identity? I’m a writer. Is my stuff any good? Are people just humoring me by being nice? Do people really want to be my friends? Who could possibly love me?

Wow.

Tough questions that stab at the heart. Those are seeds of discontent, of lies, of hatred, of fear. Plant those and they will choke out anything good, honest, loving, and hopeful.

I’m throwing out this obvious disclaimer before I go any further: I am not an expert on the topic I’m going to attempt to write about here–gratitude. My guess is you probably struggle with feeling grateful most days as well. It seems to be human nature to focus on the negatives. So, let’s take this journey together. Let’s foray into the muck of lies we tell ourselves (that we’re no good) and try to come out on the other end into something better (that we’re worthy).

I have done some book studies in a small group I’m in at church on this topic–gratitude. Some people call it counting your blessings. It’s not always easy, especially when emotions take hold and force us to take an ugly turn. As I’ve gotten older (and maybe a bit wiser), I have heard that little voice in the back of my head more–yes, even when I’m super-hormonal and slightly crazy!

When things are spiraling out of control, I can often see it unraveling. I know I am only going to make things worse for me and everyone else who has the unfortunate habit of crossing my path miserable. Often, I am focusing on one bad thing and ignoring many good things. There’s that one person who has let me down (or so I think), has pissed me off, or is just seeming to not live up to my expectations. Ah, expectations. Those nasty, petty things we want others to do, because, you know, we (read: I) know best. Um, right…

Stop right there. This is where we (yes, you and I) take a deep breath and think. Yes, think. Not react. Think about what’s going right in life. There are plenty of people who love me, who support me, who are there for me. I am breathing, aren’t I? I am alive. Sometimes it’s raining, and I long for sunshine. Sometimes it’s sunny, and I want a rainy day to cuddle inside and read a good book. But every day is truly a blessing when you think about it.

If you’re like most Americans, you have a roof over your head, food on the table, and clothes on your back. You don’t even have to think about these things, these bare necessities, but they are blessings. Often, I find that when I am taking my blessings for granted, when I stop and think about it, I know I have been blessed to be a blessing to others.

That’s gratitude–being thankful for what you do have without expecting more. A wise woman I know who has been through hell and back has a mantra: What are you doing with what you already got?

So, plant those seeds of the good stuff and water them often. That’s how you start cultivating an attitude of gratitude. You make the conscious effort (a choice, yes) to be grateful every day and count those blessings. I started writing my blessings down, with the goal of reaching 1000. I think I stopped somewhere in the 800s, but I got pretty far! I didn’t write them all in one day…a few a day, sometimes with several weeks in between writing them down. When you see those blessings written down, it can make them more concrete.

It takes a lot of practice and a constant, conscious effort to cultivate an attitude of gratitude. Do it enough, and that little voice starts to speak with more authority. You are more than the sum of your fears and little hates. You are someone whose life has a purpose. For me, I believe God sees the beauty in us even when we don’t see it in ourselves.

Those seeds can grow into something beautiful, something life-sustaining and worth sharing with others. So, I invite you to think about it. Plant some good seeds with me, make a choice, and watch them grow.

Like what you’ve read? Please subscribe to my blog, where I post a new blog every Friday and a book review the second Friday.

My new novel, Lorna versus Laura, is being released on Sept. 2 and is available for pre-order (only $2.99) here.

My first novel, Hannah’s Rainbow: Every Color Beautiful, is available for $3.99 here.

Autism – More than Just Awareness

April is Autism Awareness Month. Autism Speaks, an advocacy program, began back in 2005 and created Autism Awareness Month. Every April 2, this awareness program/campaign/whatever you want to call it kicks off with buildings worldwide lit in blue, people wearing blue, and just blue, blue, blue everywhere to “light it up blue.” This is great, but as a mom of an autistic son, I can tell you that for many on the outside, it’s easy to celebrate Autism Awareness Month like it’s something fun, like a fad, or because it seems like the cool thing to do. For those on the inside, it’s a different sort of celebration, a party that you sometimes wish you weren’t invited to.

I get the impression with many of these awareness campaigns that we need to go deeper than just wearing a certain color and creating awareness. That’s a good start, but for those directly affected by the condition (whatever it may be — there are awareness campaigns for almost anything, like October being Breast Cancer Awareness Month), awareness is not enough. Some of us are all too aware. Those who are affected live it out every day of their lives, whether the person has the condition him- or herself or it’s a close loved one.

Let me be clear: There is nothing cool about celebrating Autism Awareness Month if all you wish to do is participate halfheartedly in something that’s widespread. Autism is serious. It’s no joke. While we do want to celebrate those who have autism, I wish to distinguish between celebrating individuals and celebrating as if you were invited to a Super Bowl party. There is a world of difference.

Before I go further, I would like to direct your attention to my two previous blogs related to autism. It will help you understanding better my son’s and my own experiences. They can be found here: Blessings in Disguise – What Raising a Child with Autism Has Taught Me and You Don’t Know What Goes on Behind Closed Doors – Raising a Child with Autism.

Now that you’re back, let’s continue. There is a popular video on YouTube called Welcome to Holland. Its purpose is to help you understand that it’s okay to take a different route when raising a child with special needs, even though this wasn’t what you signed up for. The video goes something like this: You board a plane to take a trip to Italy, but when you step off, you find out you’re in Holland. At first, you’re confused and angry because you were supposed to be in Italy. That was the plan. But as you start to look around Holland, even though it’s different than Italy and not what you expected, it has plenty of its own treasures. It has tulips and windmills, for example. So, the point of this metaphor is to find the beauty in your unexpected trip with raising a special needs kid.

There is comfort in this for some. At times, it brings me peace. When things are going relatively well with my son, Luke, it’s easy to celebrate the small victories he makes. I value his differences from a typical child.

But let me be brutally honest. There are many days when I hate Holland. I hate autism. I hate what it does to my son, the hold it has on him. It breaks my heart to see him suffer where others don’t. I want to say, “This isn’t the same thing as just stepping off a plane and finding out you’re somewhere else that’s equally beautiful! I’ve arrived in Antarctica!”

I can only speak from my experience, so please don’t think that what I say applies to everyone across the spectrum. While high-functioning autistic people are usually able to contribute to society as adults, they will always have their own set of challenges. I do not dismiss someone who is high-functioning or raising a high-functioning autistic child as having it easy at all. But my experiences do not deal with a high-functioning autistic child, so I will not be further addressing that.

luke_toothless_smile

Luke was diagnosed as moderate to severely autistic when he was not quite three. Because he was still very young, I believed he might outgrow the diagnosis. I thought he could, if not catch up with his peers, at least reach a point where he would be capable of forming longer sentences instead of phrases, that he would be able to answer questions (not just by rote), or that he would be able to tell us how he’s feeling and why. In those early days, I told people his condition was mild to moderate. I didn’t want to face the seemingly bleak reality that his autism was
more severe than we thought.

As he’s gotten older (he’s now seven and a half years old), progress has been made, but it hasn’t gone the way I’d hoped five years ago. There I go again, getting my hopes up as a parent, and coming away with the stabbing feeling that this isn’t going the way I wanted. It’s hard. I mean, really hard, to swallow that large pill of a serious diagnosis that scrapes all the way down and then settles in the stomach like a lead ball.

But admitting this as truth to myself and then to others was the first step of my own awareness of Luke’s true condition. Awareness was the starting point. Then came the challenge of acceptance. Acceptance, unlike awareness — at least for me — is a constant journey. The road is sometimes clear and straight. Days are going well. Luke is happy.

But then night falls. The path makes a sharp, unexpected turn. Fog sets in. Sometimes the road even drops out from under me completely. I’m left gripping on for my life, like trying to keep my head above water and not drown. Days are awful. Luke is angry, sad, or any number of bad emotions.

See, acceptance is harder than awareness. Acceptance is difficult for those who are closest to a loved one who has autism. It’s a challenge for some who have autism and know it. Let me be clear: I accept my son for who he is, regardless of his autism. His condition does not define him. It’s part of who he is, but it is not him. What I struggle to accept is him having autism — what it does to him, how it makes him feel or act, the challenges it gives him.

So, imagine how hard it can be for others on the outside to accept autism (or any condition). It’s easy to say you accept autism, that it’s a real thing that exists, but I’m going deeper here. People need to be accepting of individuals who have autism. That’s where awareness only goes so far. That’s where the party we’re celebrating goes from Super Bowl to something more: celebrating the unique abilities and qualities of people who have autism.

I can take this further by saying that accepting those who have any mental or physical condition/diagnosis or developmental delay is vital. Raising an autistic child has made me more aware across the board when it comes to seeing people for themselves and not their conditions. Like we all have different abilities and talents, quirks, nitpicks, tastes, or anything, those are parts of us, but not all of us. If I say I am a mom, it’s part of me, but not my entire identity. If I say Luke has autism, it’s part of him, not his whole person.

This awareness has brought more compassion into my heart, a desire to understand as best as I can where other people are coming from. Instead of judgment, I choose to embrace compassion. This world has enough judgment.

That child who is freaking out in the store may be throwing a tantrum because he didn’t get the toy he wanted, but he also might be having a sensory-induced meltdown that’s beyond his control. He might be autistic and overwhelmed by the bright lights or the noises in the environment. If he’s hungry or tired, the effects of that are far worse than for a typical person. Think of how irritable you can be when you’re hungry or tired. Now imagine it for an autistic person, especially a child who has limited (or no) verbal ability to express himself. All he can do is scream. He might kick, hit, bang his head, throw things, or scratch. He can hurt himself and others. He feels like his world is ending. Like there is no escape. All is blackness. That is a meltdown. Until it passes, you stand there, helpless. As a mother, it rips my heart a little every time.

Some days, I hold it together and can handle meltdowns in stride. It’s part of my life. It’s nothing new or unexpected.

Some days, those dark ones I described above, I fall apart, too. I have disciplined my autistic son for having a meltdown, despite it being beyond his control. I have yelled, cried, screamed. I then go into my closet and sob, the guilt setting in. I did it again. I failed to be a good mother.

But you know what? I don’t really fail. Because even when that tough road tries to knock me down, I get back up. I am a fighter. My son is a fighter. I advocate. I never give up. Never. Ever. Giving up is the only way to fail.

The road to acceptance is taken with every step of advocacy. Awareness started the journey. Advocacy keeps you and me going. I am the voice for my son, Luke, because he can’t be. I write these blogs to share my experience because I will keep fighting for awareness, acceptance, and advocacy.

We have been down the road of therapies and medications. There have been unreturned phone calls from doctors. There have been stubborn employees in the school transportation office. There have been people who have stared. I see the judgment in their eyes, but my concern is and always will be fighting for my son. I have called the right people to get answers and demanded the respect of getting in touch with the doctor. I have taken my transportation concerns to the special education department and gotten a solution within hours. I have resorted to begging with a secretary to see what’s taking the doctor so long, because my son is about to lose it in that waiting room, and waiting more than fifteen minutes past our appointment time is not acceptable.

That is empowering. To fight, to stand up, to be strong even when it hurts, that is powerful.

So, there have been pitfalls. There have been people who have made our journey tedious, but the vast majority of people we’ve encountered have been kind, generous, and understanding.

The most recent example of this was during spring break at the Y. I had signed Luke up for the Y’s spring sports camp. I was unsure of how it would go over because this camp is not aimed at special needs kids, unlike any other camp Luke has previously attended. The director welcomed him to attend, and if it didn’t work out, that would be okay.

Because we are members of the Y, I stayed and worked out for a couple of hours after dropping Luke off at camp. The environment was simply too overwhelming for him. The noise level of twenty kids running around screaming in the gym drove him to the breaking point. The result was not pretty. His meltdown was one of the most intense I’ve seen since we got him on a medication to help with his irritability (which had been causing severe, frequent meltdowns for months). I couldn’t blame him in the least. After ten excruciating minutes, he calmed enough for me to hold him in my lap, but he didn’t want to leave me. We sat in the gym for the next hour, but he was done. The director and the other employees were all understanding and nice. I was given a full refund. They were genuine with Luke, too, seeing him as a person worthy of attention and respect. They high-fived him, greeted him, called him “buddy,” and smiled at him.

While I say that awareness, acceptance, and advocacy are all vital to helping those on the outside to understand autistic individuals better, to value them, to respect them, and to love them, my overall experience has been positive in this regard. Society has made good progress over the years with opening the eyes and hearts of typical people to those who have some sort of condition.

There is still ignorance, misunderstanding, fear, and disrespect in the community, however. The simple act of calling someone “dumb” or “stupid” or the R-word is demeaning. Even in jest, it is not funny. Anyone who judges a person who has increased difficulty learning, socializing, or with life skills has missed a crucial mark of what it means to have their humanity.

Every person is worthy of love, respect, and understanding. Their conditions do not define them.

Autism is just one of many conditions. Let us be more than aware autism exists. Let us truly accept those who have it and work toward a better future of increased opportunities and happiness for them.

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Pay It Forward…A Follow-Up from Choosing Kindness

‘Tis the season…

To be jolly?

To go into debt?

To give.

Because God first gave to us His son, Jesus.

In the midst of the craziness of shopping, stressing, overspending, and stressing some more, it’s easy to lose sight of what matters. Whether you’re Christian or not, whatever reason you celebrate Christmas — whether religious, secular, or both — I believe that this season can bring out the very best in people.

Goodwill toward men, indeed.

I went into this holiday season trying to not overspend on gifts. Having three young kids, it’s easy to fall into the trap of buying them things they just don’t need, especially when they’re inundated with commercials for the latest hot toys. What five-year-old doesn’t tell their mom at least once an hour, “I want that, Mom?”

It’s a trap.

Seriously.

No joke.

I kid you not.

Kid. Ha, I was talking about kids and wanting stuff. Anyway, pardon my bad sense of humor. I digress…

I fell into the same money pit this year by spending too much on my family, and I was torn between wanting to give, give, give and wanting to take some of the things back. In the end, a mom’s desire to see her kids’ excitement on Christmas morning when it came time to open the gifts won out.

However, I am vowing to go about this insanity differently next year. I want to donate or give to charity the same amount that I spend in gifts on my family. That’s not an original idea, but I heard it somewhere, and it stuck with me. I’m up for the challenge, and I’m not all talk.

See, when I put my mind and heart to something, I can accomplish it. Case in point: Almost two years ago, I sat down and said I was serious about writing an original story. I would write at least fifteen minutes a day. If I missed a day, okay, but I wouldn’t let more than two days pass without writing. Ten months later, I had my first draft completed. That was almost a year ago. Now, I have the first draft of a second novel completed that’s currently being read and edited by a writers group at the library. I have self-published my first novel after going through the arduous process of querying a hundred literary agents and getting many rejections, but I kept at it. I am well into writing my third novel. I have the first chapter written of my fourth and have an idea for a fifth.

noactofkindness So, if I can write and be dedicated to it, I can be more generous next Christmas. I can give more to those who really are in need and give less to my own family, who already has plenty of things. We don’t need more stuff.

You might think, “Okay, that’s all well and good to make plans about what you’re going to do next year, but what are you doing about it right now?” (Also, it sounds rather like a New Year’s resolution, and by the time I actually get this blog published, it will be New Year’s!)

I do regularly give to charity. I sponsor two children through Children International, but for me, that wasn’t enough this Christmas. I became aware of a family in need. The father had just lost his job, and having a kid to support, you can understand why I wanted to help out. Also, this family is close to heart, so if there was something I could do to help them, it would be all the more important to me.

I didn’t have the means to personally give them much as far as money goes, so I organized a Go Fund Me campaign and rallied my friends and family for several days to give to this family. It was a beautiful thing to see the response. Many gave, and it’s not a matter of how much you give, but giving what you can. In the end, I was so happy to be able to give them a sizable amount of money to help them pay their bills and put food on the table, and while I was a part of that, I cannot and do not take full credit. So many people stepped up, and I love that.

Another friend told me about the local Elk’s Club wanting to give a large box of food and gifts to local families in need, and she thought of the family I was supporting. Needless to say, I got in touch with the Elk’s Club, and they were so generous and kind to deliver such a box to this family.

In the midst of all this, I have my own troubles, but to help others lifts the burden of my problems. I firmly believe that reaching out and helping others is one of the best ways to help yourself. Everyone benefits. There is nothing lost, for, you see, love has no end. It’s funny how the more love you give, the more love grows. The more love you receive.

So, I did my little part in paying it forward. I had no expectation of getting anything in return from those I helped, so you can imagine how moved I was to be on the receiving end of the generosity of others who felt they wished to help my family. I never asked for it, nor expected it.

A Christmas card arrived from my church a couple of weeks ago with a hundred dollars in gift cards to a grocery store! The card was simply signed “From your friends at church.” I have recently expressed my heartache to some friends at church about the struggles my autistic son and my family are going through, so I can only guess that someone did this kind deed because of that. I cannot be sure.

As if that weren’t enough, on Christmas Eve, my husband and I dressed to play Mary and Joseph and were waiting in a classroom for our entrance into the sanctuary when a friend approached me and handed me an envelope. “It’s not really a Christmas gift,” she said, “but a couple of us from our ChristCare group (a Bible study group of sorts) wanted to help you out.” I smiled, thanked her, and tucked the envelope in my purse. Hours later, after the service was over, the kids were in bed, and the presents were under the tree, I opened the envelope to find three hundred dollars inside and a note that said, “For your son’s therapies.” Tears streamed down my face for the second time this Christmas season because of the kindness of others.

So, as another year winds down, I am thankful. It started around Thanksgiving with the extra intention of choosing kindness (read last month’s blog if you’re interested in knowing more). As Christmas came upon us, I made the extra effort to pay it forward in terms of generosity, just one form of kindness. And it certainly came back around to touch me.

If you don’t believe that what goes around comes around, maybe you’ll think my story is just that — a nice, little story. To me and many others, it’s more. Much more. May we all go into the New Year with a sense of wanting to reach outside ourselves, and you’ll see. It will come back to you.

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This blog will be updated at the end of every month. Stay tuned for what’s to come in 2017!

Choose Kindness

For the first hour of any given day, my mind is not awake. My wish to ease into the day, to be up before my kids and get dressed and have breakfast alone, is ungranted. It’s almost laughable. In the midst of hurrying and scurrying to get three kids and myself dressed and fed in a little over an hour before the school bus comes, I usually grumble at the slightest provocation. As a mother, I feel like I go through my days with a sense of irritation just below the surface.

As the day goes on, I silently lose my patience at the slow driver in front of me or for getting too many red lights. I’m going to be late again. Of course, someone needing to use the bathroom right as we’re stepping out of the house or me frantically searching for my keys or phone as, again, we need to leave, doesn’t help.

I look at my shirt that says “Kindness Is Always in Style.” How easy is it to wear it on clothing, but how do I wear my kindness toward others? Kindness isn’t something we just put up to look good and then cast off at the end of the day and put in the laundry (or cast off whenever it’s inconvenient for us). At least it shouldn’t be. Kindness is more that something we parade around and show off to the world.

It should be easy to be kind, right? Holding the door, saying hi, please, and thank you, and offering a smile to a stranger might be the only light in someone’s otherwise bleak day. It’s true that you never know how you might affect someone else. You could very well be their sunshine, if only for a moment.

If I’m being completely honest, however, I believe that it’s easier to be kind toward a stranger than those closest to me. Then there are those days when I walk right past people and stare at the floor, wishing I was the only person I could be around. Heck, I even make myself miserable on those days!

When I was younger, if I felt someone had wronged me, I wanted vindication. I wanted to be right and to make sure they knew it. I’ll never forget a big turning point for me in regards to this way of thinking. When I was 29, I was in attendance at a lecture at the natural history museum in Cleveland, and the presenter was basically trying to prove that there was no God. I remember thinking, “What does this have to do with science?” As I listened to him, I silently fumed. When question time came, no one in the audience seemed to be bothered like I was by the presenter’s topic. I muttered to my husband and father-in-law, “I’m waiting for someone to knock him down a peg or two.”

Then realization hit me like a ton of bricks upside the head. I was knocked down a peg or two! I realized that I was more concerned with being right than being kind or having a concern for this man. Regardless of his beliefs, they were his. He wasn’t being disrespectful in how he presented them, so what was my problem? My problem was that what he was professing didn’t agree with what I believed to be true.

So, I understand now that there’s a thin line between genuine concern for another and wanting to be right. It’s not a kindness at all if my falsely-laced concern is just me looking for gossip or a reason to feel better about myself.

noactofkindness

Another lesson I’ll never forget is a sermon our previous pastor gave on kindness, probably four or five years ago. He repeated the phrase “Never underestimate the value of kindness” three times, shortly and deliberately at the end of his talk. Those words have stuck with me and molded themselves onto my heart like a brand.

There’s a definite shortage of kindness in the world. Whenever we come into this time of year of holidays, most of us gather with family and friends, over-indulge in food, alcohol, and presents, having spent too much money and exhausted ourselves in every way possible by the New Year. As a mother, I try to teach my kids the value of kindness by thinking about those who don’t have much and what giving means: that it’s more important to give than to receive, with no expectation of anything in return. When the TV, radio, and the Internet are abuzz with ads for every type of must-have toy or that year’s latest tech, it’s really hard to drill that lesson into the mind of a young person…or even an older person.

A small group I’m in at church that’s been meeting every Monday afternoon for nearly six years to do various book studies that relate to the Christian faith has been doing a study on Advent. It’s made me think about what I can do in small way to live out my faith better and in a more like-manner of Jesus. Kindness is one of the fruits of the spirit. I can make an effort to be kinder.

But it’s not usually my first inclination to act in kindness when I feel slighted. This is the true test of a person’s patience. I was part of a Sunday morning group that met regularly at church for some time. There was a single guy in his thirties who joined us, but after a few times, he wrote an email to the group, in which he said he was moving away and wanted to find a different group, one with people who had problems. He was looking to work with people who suffered. I got the jist of what he meant – people who suffered outwardly, who lacked resources or money. He didn’t feel right in our vanilla suburban setting.

I was offended by what he said, for I thought, “Just because we aren’t suffering financially doesn’t mean we don’t have problems.” Many people suffer silently. While I could have gone off about such a thing, I held back. I knew better than to come at him with claws out. Hadn’t he spent several weeks in Sunday school with the same group as me? So, I held my tongue and wrote an email, explaining that I was sorry to hear he was leaving, but that I understood. I gently pointed out that I suffer inwardly a lot because my oldest son has autism. I explained that just because a problem isn’t noticeable, that doesn’t mean it’s not there. He wrote back, apologizing for the way he’d worded things, saying that it hadn’t been his intent to offend. He got what I was saying and agreed, even opening up about his background some. Because he had once been down and out and had been helped by others who had the means, he now felt the desire to pay it forward. We split ways, mutually in understanding. That was the result of choosing kindness.

With these examples in mind, I hope I can remember to choose kindness this Advent and beyond. I hope you’ll join me.

With Cyber Monday tomorrow, I’m putting my book on discount. You can download the e-book for only $0.99 (original price $2.99) all week! Looking for a Christmas gift for a lover of books? Why not consider ordering a paperback copy of my book for them?

Please note: This blog will be updated monthly on the 27th.