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Christmas Time is Here
Happiness and cheer
Fun for all that children call
Their favorite time of the year
Beauty everywhere
Yuletide by the fireside
And joyful memories there
Being Someone’s Person
We are incredibly huge Grey’s Anatomy fans, my cousin and I. She took to calling me her person before I got to that episode on Netflix a few years ago. I could not for the life of me figure out why she began referring to me as “person” instead of Jo, Leggz, or even Mom as was our normal. Then I saw it: the episode.
We Are Never Alone
Dear God,
Thank you for going to school, going to church, playing at home. I love you.
Amen
*****
This is the prayer of a little boy on 9/11/2016, a little boy we once were told may never be able to communicate effectively.
Fifteen years ago, I stood in disbelief as the events of 9/11 unfolded before us, pregnant with our twins and suddenly questioning everything I thought I knew about life and how we would live it. My hopes and dreams for the world our son and his unborn siblings would grow up in were being tested.
I shook my head, not able to comprehend the way our world had just changed and held my son tight as often and as long as he would let me.
Our leadership stepped up. President Bush reassured us, “I can hear you, the rest of the world can hear you, and the people who knocked these buildings down will hear all of us soon.”
America united and over time, peace in our hearts was restored.
Four years ago, I also stood in disbelief as doctors, therapists, and other professionals, told us our son may never be able to communicate with us, may never understand what we tell him or be able to express himself effectively, may never be able to build friendships or relationships of any sort. He may lash out at us. He may run away from us. He may never this or never that…my hopes and dreams for one of my sons were again being tested.
Once again, I shook my head, not able to comprehend the way our world was changing and once again, I held my son tight.
Diagnosis day is different for every family, and in fact, different for each person in that family as we all feel and process differently. For us, it was confirmation of something we already knew in our hearts. Yet, hearing the words still pack quite the punch. For me, it was the beginning of a battle in a war we’d already begun.
A month later, another initiative in this battle to hold onto our son and help him move forward commenced with Easter Seals’ Intensive Therapeutic Autism Program (ITAP).
ITAP’s director and her staff quickly became trusted confidants as we began traveling to Peoria for Ben to participate in their three hour program twice a week. Ms. Wiebler assured us that she could hear us, she could hear Ben, and after only a few days into the program, she already knew that everyone would hear him very soon. We united and over time, peace in our hearts was restored.
Life may never be what we once expected, but the peace the prayers of this little boy on the anniversary of an event so breathtakingly terrible brings to my heart reassures me that I am heard; my faith in our creator reassures me that he is heard; and the moments we slow down, allowing ourselves to both hold and be held reassures me that we will never face any battle alone.
Thoughts on Graduation…
It’s one of those milestones you know is coming. Heck, as parents, we adventure our way through 13 years of encouraging our children as students, always keeping an eye on the prize of the diploma; and yet, when our child’s graduation day has come, we still wonder how in the world it got here so very quickly.
Wasn’t it just a few years ago I stood in front of the elementary school with our oldest son, choking back a tear as he shared, no he wasn’t a little scared, but maybe a lot scared? Didn’t he just cross the blacktop and settle into his new routine of switching classes in middle school? Hadn’t we just completed those 50 hours of drive time? Wasn’t he just taking his first steps; stomping and demanding to be called “Robert” instead of Bobby because Robert starts with an R just like Winnie the Pooh’s friend Rabbit; getting his first base hit, turning his first double play; chasing down his first steer, catching his first heifer, raising his first calf; pulling up the drive after his first day of work; and returning home from his last day of high school?
As we prepare for our oldest son’s graduation, many thoughts have passed through my mind – many memories for sure, but also many reflections. Sure there are several times looking back I wish I would have said or done things differently, but honestly, these have been the best years of our lives. We have grown as a couple and into a family I never could have imagined, not even in my wildest dreams. It seems to have all happened so very quickly, as here we are at the precipice of a whole new beginning.
I have pondered what it is I want to say to our son on his graduation day. What lasting nugget of wisdom, can I possibly give him on this, one of the biggest days of his life? While it’s not an exhaustive list, these are some of the things which have been laid upon my heart this week:
- Days are long, but the years are short – make them both count. There have been so many times I have thought, “We can do that later.” Later isn’t promised. Tomorrow isn’t guaranteed. Your next breath may be your very last, so please don’t spend your life living for tomorrow, promising yourself and those you care about that you’ll get to the important stuff later. Those things which will bring you all joy should be embraced often. Live each day as if it were your last.
- Treat others kindly, and remember to do the same to yourself. Yes, be kind to yourself. There are times we can be our own worst enemy. Don’t do that to yourself. Be your own encourager.
- Look to your maker daily. Realize what a treasure He created you to be – dream and then go live! The biggest adventure you can take in life is to simply live the life of your dreams. This won’t always be easy, but I can promise you, it will absolutely be worth it!
Son, you have accomplished so much in these very short years, and we could not be more thrilled for you or proud of you. You’ve worked hard and played hard. You’ve grown from an ornery boy to a fine young man right before our very eyes. You have brought us great joy, laughter, love and even my share of tears for a variety of reasons, but the one thing that makes us most proud is who you are – the person that makes you uniquely you.
I love to watch you interact with other people. It’s clear you genuinely care about those around you regardless of their age, position or ability to do anything for you at all. You invest in your siblings and you realize that young children are looking up to you, always watching, always learning. You look to the future and consider the path before you. You seek the wisdom of those who have gone before you, but you follow your heart as you trudge on. As your mother, this can be both quite satisfying and quite frightening all at the same time. Through it all, you keep the main thing the main thing – investing in yourself and in the relationships which bring you closer to God and keep you focused on His path for you.
As your graduation day draws near, there is a whirlwind of emotions running through me. I cannot promise a tear or two won’t fall, but know this, my son, these are tears of joy. They are the accumulation of your entire lifetime of ups and downs, of skinned knees and high fives, of frustration in the cattle lot and hugs in celebration of goals attained and dreams realized. These are the moments I have lived for, the moments you have looked for me. Our lives are about to change in ways we cannot yet imagine, but I can promise you this: We will always be right here for you and you can always find home in us.
Congratulations, Son!
Love,
Mom
Don’t Be Duped by Lists
That’s our Spectrum Boy, right there in the middle, surrounded by and holding hands with his people, smiling, and looking straight at the camera. (Shared with permission from parents of all these amazing kiddos.)
A quick scan through social media can lead you through any number of lists: to-do lists, don’t-do lists, top 10 lists of this that and the other.
I happened upon one the other night from TheAutismSite.com blog which touts the Top 9 Signs that Your Toddler May Have Autism.
- Lack of Smiling
- Rare Imitation of Social Cues
- Delay in Babbling & Cooing
- Unresponsiveness to Name
- Poor Eye Contact
- Infrequently Seeking Attention
- Lack of Gesturing
- Repetitive Behaviors
- Delayed Motor Development
As I read through this list, I found myself shaking my head. You see, our spectrum son wouldn’t have fit into more than one of these categories his first two years of life. He was very much a “normal” kid, there were just some things that were different as compared to his older siblings, not wrong, but different. Because of my husband’s involvement in education as a career, he knew long before I did what we were looking at, but even I knew something was different. Because our son was meeting typical milestones, our doctor suggested a “wait and see” approach to answering the oddities that were quickly making our son “him”; again, nothing wrong, just different.
It finally took a long talk with a trusted cousin whose son had recently been diagnosed with Asperger’s Syndrome before I could wrap my mind around the possibility that what I considered as a “maybe” could very well be a “reality” and even at that point, I had to call our pediatrician to ask for a referral to Easter Seals so that we could begin the diagnostics process not because we wanted him to be autistic, but because we knew we had to find answers for our son.
It would be another 18 months before we would have the diagnosis and even begin to know who and what to ask in order to better help our son, but I shudder to think if we had given up based on a list such as this simply because, well, he didn’t fit the mold of that list. My point here is that as parents, we know our children, and quite often, we know when we need to move on in seeking help for our children. I think back and realize how easily we could have written off the oddities that just made Ben his own little person, but we knew there was more to it than a different personality. Because we followed our gut instincts, we were able to get him the help he needed so that he could enjoy things like an afternoon at the park or the beach and time spent with peers. These still are not easy things for him to tackle, but because of the efforts of countless people along the way, they are at least a possibility. And the smiles that come with the requests to go back to the beach are simply priceless.
Finding Out What We’re Made Of
* I’m still in catching up mode. If you are a loyal follower of this blog, I offer my deepest apologies for not having posted regularly for about 10 weeks. See, about that time, I took on a new adventure of being a full-time substitute for an amazing high school social studies teacher who was on maternity leave. Clearly, some things had to go just to keep up with everything between school, our family, my photography, and my part-time work with our church. There just weren’t enough hours in the day to continue everything, so blog-posting was one that had to go on the back burner. However, I kept writing. It’s one of those things that I find I simply can’t not do. It just happens. So while I wasn’t posting, I was still writing. It’s time now to catch up. Thank you for sticking with me! 🙂 Here’s “Finding Out What We’re Made Of” from July 2, 2015.
FINDING OUT WHAT WE’RE MADE OF
I often wonder if people get tired of hearing of my “amazing Ben stories” and wish I’d just keep the quips to myself. I think our friends and family understand our excitement and the enormity of some of our musings, but others, well, others may wonder what the big deal is.
The reality is, every moment of everyone’s life is to be celebrated to some extent, but for those on the spectrum, even the little things are big things. Some people with autism can’t talk. That doesn’t mean they don’t communicate. It means we need to work to understand their language. Behavior is communication. Facial expressions can be a language all their own.
Sometimes we have to push through the difficulties, work through the tears and the fears and the “I want to give up”s and work toward the goal. Sometimes the goal is finding a way to communicate needs. Sometimes the goal is being able to stand up and walk or run or jump. Sometimes the goal is to read a book, write your name or do a math problem.
There are plenty of opportunities to quit; lots of chances to give up along the way and say, that’s okay, “I will just read to Ben. I will write his name. I can carry him.” But that doesn’t help him in the long run. It doesn’t help either one of us when he is in school, or when he is too big and I am too weak to carry him. So we push through. We love through the tears and work through the challenges. And eventually we get to the “I Did It, Mommy!”s.
As our Pastor instructed during a recent lesson on staying the course, somewhere between “I want to quit.” and “I’m finished,” we find out what we’re made of.
We’re All Survivors
* I’m still in catching up mode. If you are a loyal follower of this blog, I offer my deepest apologies for not having posted for the last 10 weeks. See, about that time, I took on a new adventure of being a full-time substitute for an amazing high school social studies teacher who was on maternity leave. Clearly, some things had to go just to keep up with everything between school, our family, my photography, and my part-time work with our church. There just weren’t enough hours in the day to continue everything, so blog-posting was one that had to go on the back burner. However, I kept writing. It’s one of those things that I find I simply can’t not do. It just happens. So while I wasn’t posting, I was still writing. It’s time now to catch up. Thank you for sticking with me! 🙂 Here’s “We’re All Survivors” from June 25, 2015.
Here he is … doing what he does, getting through the day – another day filled with overly stimulating situations, too many noises, too many people in too small a place. Yet here he is, a survivor in his own rite.
WE’RE ALL SURVIVORS
The past few weeks have been full of disappointing news far and wide, from the church shooting in Charleston, South Carolina, to ill-timed mistakes, losses of friends and acquaintances to cancer, and news of more friends embarking on another battle with cancer.
There are a few bloggers I follow for various reasons, but my favorite by far is that of another spectrum mom, Diary of a Mom. Her dad recently became a widower as his wife’s battle with cancer came to an end. As they said their goodbyes at the end of a visit, he told his daughter, “I am a survivor. I owe it to whatever my life is going to turn out to be to live it.”
What a profound statement. It stuck with me in such a way I just couldn’t shake it. The more I think about it, I have begun to realize that we are all survivors in some way, shape or form. We all fight a different battle – some fight cancer; some fight depression; others battle self-doubt and any other host of conditions. Some are survivors of hurtful relationships, poor parenting, or less than good choices. Others are survivors of injuries, or accidents. At the end of the day, I most generally feel like a survivor for just getting through it with all of us and our relationships still intact. Please don’t mistake my analogies for a comparison between what we face and the atrocities of dealing with the loss of a loved one from cancer, my point here is that we are all survivors of something or another. Some of us thrive despite the challenges and others struggle, but we survive.
As I take on different challenges today, whether it be mechanical failure with something I thought sure was going to work just fine or the frustrations that come for a son on the autism spectrum, I’m doing my best to take a deep breath and remember that we are survivors. We owe it to whatever our lives are going to turn out to be to live them.
What’s It Like?
* I’m still in catching up mode. If you are a loyal follower of this blog, I offer my deepest apologies for not having posted for the last 10 weeks. See, about that time, I took on a new adventure of being a full-time substitute for an amazing high school social studies teacher who was on maternity leave. Clearly, some things had to go just to keep up with everything between school, our family, my photography, and my part-time work with our church. There just weren’t enough hours in the day to continue everything, so blog-posting was one that had to go on the back burner. However, I kept writing. It’s one of those things that I find I simply can’t not do. It just happens. So while I wasn’t posting, I was still writing. It’s time now to catch up. Thank you for sticking with me! 🙂 Here’s “What’s It Like?” from June 18, 2015
Life on the Spectrum is full ups & downs, with smiles, love & laughter to brighten every single day.
Some people ask, “What’s it like to have a child with autism?
I suppose it’s a fair question. Truth be told, I’ve often wondered “What’s it like…” when I encounter people with family situations different than ours.
There are many ways I could answer this, but the truth is, it’s just like having any other child, perhaps with a little more intensity at times. The highs seem a little higher because for the challenges we face and the lows seem a little lower, also because of the challenges, but the bottom line is, he’s a child. He’s our child. And we love him to the ends of the earth and back.
Sometimes, communication is difficult. He can’t always use words to tell us what he needs or what it is that is bothering or hurting him, but we have learned that there are many ways to communicate which don’t involve words at all. We’ve learned that behavior is communication. This little nugget has carried over into parenting our neurotypical kids and opened my eyes in ways I didn’t even know needed opening. It’s made me more perceptive, not only in dealing with our own kids, but also in teaching and mentoring the young people I’m blessed to know through our Girl Scout and summer ball adventures.
Sometimes, our other kids have to be more patient, more helpful and a lot more grown up than their peers. These four have matured in ways their peers may never experience, simply because of our life with autism. While that sometimes breaks my heart, I also realize they are a compassionate crew who would move mountains for their brother and that fills any broken pieces of my heart with a pride, love and respect I hope every parent gets to feel for their child.
So what’s it like to live life on the spectrum? It’s a roller coaster full of ups and downs, and lots of thrills along the way.
Christmas Miracles
More than 2,000 years ago, a babe was born in a stable and placed in a manger to rest while his parents watched and marveled at this wondrous creation, who they already knew would change the world. In a short 23 years, he would teach multitudes of people to trust God, he would lead them to his Father, and eventually save all who would believe in him from eternal damnation.
Seven years ago, another boy was born in a quiet room and laid to rest as his parents watched and marveled at this wondrous creation, who they already knew would change their lives, but had no idea how much he would change the world around them.
Every child is a miraculous creation, a blessing from our Father in Heaven, born with a purpose only fulfilled by them. As parents, it’s easy to dream about the future our children will enjoy, all the great adventures they will experience and all the joy they will bring their families. Special needs parents are no different. We, too, dream of our children’s futures and wonder about all the great adventures they will enjoy, but the dreams are often plagued with bumpy roads to and from diagnoses and question marks of which path to follow from there. However, the dreams are no less real and the miracles we find in the moments of everyday life seem even more miraculous.
This Christmas season has been full of miraculous moments for our family, beginning with a different kind of worship experience Christmas Eve. Our church enjoys a quiet, peaceful, candlelight service at 9 p.m. on Christmas Eve each year. It is such a beautiful service, completely calming to my heart and soul, which is generally running near empty by that point in the evening. This service is also about an hour past the beginning of our bedtime routine, so there is always the question of if it’s really going to be worth it to go, as in, how tired are the kids and will we make it through without anyone falling apart?
We enjoyed a very peaceful, calming service with Ali snuggled up tight on my lap, Ben drawing happily next to his dad, and our big three sprinkled among us, filling our pew. Another young one was not having such an easy time with worship when Ben looked at his dad and said, “I hear a baby. Loud because he’s crying. Not happy. He needs to be quiet.” (smile) Chris confirmed there was a baby crying and probably wasn’t happy, but that everything was okay.
Candles were lit and Silent Night sung. Ben sighed, smiled at his dad, and said, “Happy.” Happy indeed. How could a moment be more perfect? It may not seem like a big deal to the average onlooker, but this is a family who struggles to get through morning worship without the whole church hearing Ben asking or telling us about what he has drawn, hearing us trying to get him to whisper, or hearing me reminding myself this is only a phase, that he will eventually begin to whisper in church rather than talk out loud.
A small, sweet voice broke through the excitement of unwrapping presents and blessed us with a story.
The next morning, amidst the excitement of opening presents, I heard a small, sweet voice: our Ben reading a new book he had just opened. It was an easy reader Rudolph adventure. To understand the enormity of this situation, you have to know that a year ago, he had no interest in reading at all and honestly, little to no interest in even being read to. And now, on this beautiful Christmas morning, here he was, sitting in the midst of four excited siblings opening gifts, reading a story. The best part of this moment: his siblings noticed, too. It didn’t take long for the unwrapping to cease and our entire family to sit and listen to the new adventures of Rudolph. It wasn’t the birth of a baby who would save the world, but it was a perfect moment in our family Christmas.
Day 6: Faith
I was raised on Sunday school, church, Bible school, Saturday morning communion classes, and Wednesday afternoon confirmation classes. I learned many life lessons in the quilting room which doubled as our classroom at St. Luke’s in Campbell Hill, IL. It was in the Saturday morning communion class that I learned how to kick a kickball and one Wednesday afternoon confirmation class taught me just how far a seventh grader could spit Dr. Pepper when a classmate surprised everyone with how realistically he could imitate a machine gun. These are important things to know as you’re growing up! But somewhere along the way, I also learned how much of an impact a simple gesture can make on someone else’s life, even when you don’t realize it because to you, it’s just a simple thing you do. I learned that life isn’t always easy, but that doesn’t mean it isn’t good. And I learned that a little bit of faith can take you a long way. I had no idea in those preteen years how profound that lesson would become in my child-rearing days.
I’m thankful for autism because it has brought my faith to the forefront of my being. Yes, I have relied on my faith to get me through troubling days several times over the years: my parents’ divorce; losing our fourth child to a miscarriage; and the death of my brother, my grandfather, and a dear friend all in the span of two months to name a few. However, nothing but our faith could have gotten us through the blow that came with Ben’s diagnosis and the subsequent roller-coaster that has been our lives ever since. I’m eternally grateful to be blessed with the wonderful husband I have. Recent statistics indicate that 80% of marriages with a child on the autism spectrum end in divorce. 80%. That number nearly takes my breath away. I have never felt that our marriage has been threatened by autism, but I also know that having a husband with a strong faith has made all the difference in the world in how we handle life on the spectrum. That doesn’t mean he’s perfect. Neither of us are, but strong marriages rarely involve both people being strong at the same time, but rather a husband and a wife who take turns being strong while the other is feeling weak. I know that when I’m down, I won’t be there alone (physically and figuratively) and I won’t be there forever. Having faith tells me that no matter what lies ahead of us, God is already there.
thespectrumscene 