It’s 8:22pm on a Monday evening and I was resting my eyes on the couch (okay fine, I was taking a nap) as my husband practiced the piano. As he worked through various passages of a highly challenging piece, the sharp pangs of multiple flats pierced my heart. This wasn’t for his choir pieces at school where he teaches. He was practicing for our son Ben’s college audition. He’ll primarily be applying to the Berklee College of Music and our alma mater, Belmont University. His first choice is Berklee. I was roused from my catnap by the sudden urge to write through the flood of feelings I am experiencing (often) as I prepare to launch my firstborn from the nest in less than a year.
I’ve been hyper-aware that every moment is a moment I may not remember, and so I must cherish each one in its time. They say the nights are long, but the years are fast, and when my baby boy was small enough to be snuggled tightly in my arms, I remember thinking, “yes, but these nights are so long.” It seemed years would never pass. But pass they did and 17 and a half years, one month, and 12 days later, here we are.
Earlier today I heard Ben practicing his scales on his alto saxophone. Tonight, his father practices the accompany part as if it were his own audition. I began to imagine the scene in the audition room. Ben would introduce his father as his accompaniment partner. I wonder if they might be impressed that father and son can play so magnificently together. I smile to myself as Ben has now joined in the practicing, and it’s truly a magnificent sound.
Before our children were born, we asked all those fun questions – “you think he’ll take after us and get into music?” People asked us if we’d be upset if we didn’t have musicians in the family. Such a ludicrous question to ask. Of course not. We’d be so proud of the hobbies and gifts our children had even if music wasn’t among them, just as we are of our other children who don’t share the same level of enthusiasm for music. But now that we have an amazing young musician to share these passions with, I can only tell you it is a joy unlike any other. But not because it’s what we also do, although that certainly has some sway in our feelings. It’s because he has worked so hard for so long to come as far as he has. He found something he loved at an early age in the 4th grade thanks to an introduction to band instruments, and he pursued it with the vigor and loyalty we have come to appreciate about our firstborn. Ben is nothing if not passionate and loyal, and his music demonstrates these qualities even in practice. I absolutely love watching him blossom as a musician.
What makes my heart twinge is realizing these gifts will soon be leaving my home. I only have maybe 10-11 more months to have a TV show interrupted with the singing of his saxophone drifting down the stairs from his studio he created in our guest bedroom. Less than a year to be serenaded while we set the table for dinner. Only the blink of an eye before he latches his saxophone it its leather case one last time, not to head to band practice or to put it away like I’ve been telling him to do for three days now, but to permanently set off for a new adventure. Sure, he’ll be home for college breaks, but it won’t be the same. It’ll be the end of an era.
I’m not ready. I have what seems to be all this time to prepare these next several months, and it’s not enough.
I feel now as if someone is surgically removing my heart, one incision at a time. One cut here tonight listening to him practice for his college audition. Another cut tomorrow when he says something funny, and we laugh together. And more and more cuts, deeper and deeper as we escort him onto the field for senior night, or he performs in the musical at school, or we have silly arguments at the dinner table, or learns of his college acceptance, or he finally walks across a stage to accept his hard-earned diploma. Little by little, time is slipping away quietly and painfully but quickly, and there’s nothing I can do about it.
Except to enjoy the moments. Moments with laughter that hurt so much that I can’t breathe. Moments with (his) snarky comments and (our) raised eyebrows. Enjoying his guacamole on Taco Tuesday because he seriously makes the best guac. These are the moments that happen while the second-hand gently ticks by.
The thing is, I really like him. I’ve talked to all kinds of parents over the years, and frankly, not everyone truly enjoys their kid. If Benjamin weren’t my son, I’m pretty sure I would want to be his friend. I’d want to hang out with him. It’s just a bonus that, for now, I still get to tell him what to do… and pay for all his stuff. But really, I love just being with him. His presence in our house is unique, as is that of each of our children. But they’ll get their own blog post one day. Whenever he’s not here, the dynamic changes, though not in a bad way. It’s just different. It’ll be hard to get used to on a regular basis. So sometimes when he’s at band practice or galivanting with friends while the rest of the four of us instead of five are eating dinner together, I imagine that’s what it’ll be like. And my wounded heart kind of jumps a bit.
“Not yet,” it whispers. “Please… just not yet.”
The post Preparing to Launch appeared first on Hope in Autism.
]]>I began a blog series on Post Tenebras, Lux, which means, “after darkness, light” upon inspiration after attending the Sing! Conference hosted by the Getty’s. The series is posted on the Key Ministry Special Needs Parenting blog, but I’m including the first part of the post below. You can find a special social media post shared by Joni Eareckson Tada about this series by clicking on the “On Social Media” button above.
I had the privilege of attending the Sing! Conference hosted by Keith and Kristyn Getty, who are modern-day hymn writers and talented musicians. It was three and a half glorious days filled with beautiful music, incredibly talented musicians and songwriters, teaching by some of the most influential pastors of our day, and biblical encouragement from Joni Eareckson Tada herself. Thousands of people from all over the world descended on the Opryland Hotel in Nashville, TN for this incredible conference, and 16,000 attended a concert of music and preaching at Bridgestone Arena, where Joni led us in the most moving and soul-stirring a capella singing of “All Hail the Power of Jesus’ Name,” the likes of which I wonder if I’ll ever experience again this side of heaven.
Being immersed in that worship-filled environment for three days straight was most refreshing and needed for my weary soul. To be surrounded by people singing praise and worship, knowing we all have our baggage and various temporary and permanent thorns, yet there we were: singing our hearts out, being encouraged in song with the voices of thousands uplifting our hearts and minds to focus on the One who loves us most, the only true Hope we have in this fallen world of darkness and despair. The One who allows trials, challenges, hardship, disability and death uses those things to make us more like Christ, redeeming the despair into delight through the light of Christ. He repurposes it all into something more beautiful than we ever thought possible; He strengthens our feeble knees to stand on a solid foundation of hope, that He is making all things new, both now and forevermore.
The post Songs for the Weary, Hopeless, and Grieving appeared first on Hope in Autism.
]]>The post My Dear Friend Jaclynnette: A Tribute appeared first on Hope in Autism.
]]>Sometimes, there just are no words.
I wrote the actual tribute below shortly after Jaclynnette passed away one week before Thanksgiving. It took me a while to sit down and write it, because there was something more final about her death by putting it into words. I put off writing because I had already hurt so much. I didn’t want to jump back in the waters of grief again, knowing the feeling of a tight chest, unable to breathe from the grief. Somehow though, I wrote it. And then I put off publishing it. I know I don’t have to. This is one of those things that I can keep just for myself, and that’s okay. The world doesn’t necessarily need to see these words. But I felt, again, that by publishing it, I could let go, whatever that means. I would have more closure than I did by simply writing it.
Except I won’t.
I won’t ever be able to fully “let go.” If I’m honest, I don’t want to. I don’t want to forget. I won’t ever have total closure. And I know that by publishing it, I will submit myself to feeling everything all over again, even though part of me is tired of feeling.
But for those who were closest to her, they don’t have a choice. They feel it every day. And every day, grief crushes their soul just a little more than it did the day before. Because every day, they are reminded again that she will not come bouncing in the door with a story to share. Jace, Kadin, Rhyston, Davin, and the rest of her family and friends will never have “closure.” Not on this earth.
And so, I write. I write to walk the path of grief alongside my brothers in Christ, whom I love as dearly as I loved their wife and mother. I write to join in their suffering as we share in the sufferings of this broken world together. I write to remember the beauty of my friend, and her friendship. I write to remind everyone who reads this that in the palpable void that Jaclynnette’s absence leaves in our lives, in our futile attempts to wrap this all in a box tied with a bow and set on a shelf only to be remembered upon occasional dusting, we will never ever have closure in death.
Because death does not own the privilege of having the final say.
If I may honor Jaclynnette’s life in any way, let it be in this: Jesus Christ has come. He entered into our suffering. He suffered on our behalf. Jesus died. But His death was not final because He rose from the dead. Christ overcame death. Once and for all. And He is coming again! For those who believe in their heart and confess with their mouth that Jesus Christ is Lord over all, there will never be closure in death. Only a pause. A semi-colon in a sentence. The terrible fact is, the semi-colon hurts. It’s painful. It’s grievous in the worst way. But for those who feel the sting of death’s punctuation, keep reading. There is hope. One day, death will receive its own final closure when the King returns to reign forever. And those who believe in the risen Christ will stand behind Him as He slams shut the door in death’s face, never to be opened again. But for now, take heart. We’re still living in the first half of the full sentence that has already been written; Jaclynnette lives in the second. And there is no period at the end of the sentence …
Jaclynnette Broadhurst: A Tribute
“I don’t want to just survive. I want to thrive.” These are the words my friend Jaclynnette Broadhurst truly lived by. She made the most of every moment. There was no adventure too great. She took advantage of every possible opportunity that would make life more fun. She squeezed out every available ounce of joy she could in her 43 years.
She made this earth her home away from her true home with Christ. She lived her life in such a way that showed everyone who was watching just how beautiful Jesus is. How great is the God she served in all things. How good He is, even in the midst of such pain and suffering.
Even in cancer.
People were drawn to her because of her love for her Lord. Her excitement and laughter was contagious. She had a way of making others want to feel the way she looked: joyous and beautiful. Jac, as some of us call her, was so beautiful. Her eyes sparkled with mischief when she got a crazy idea (which happened often.) Her brilliant smile lit up a room. Her hair danced on her shoulders as she sang in worship, or in her own kitchen at home.
And she turned into a giddy school girl when her husband, Jace, was around. He was her “eye candy” as she called him, and she wasn’t shy about how passionately she loved him, and vice versa.
I remember when my husband and I were visiting with them before moving to the area and I rode with her and her boys to church. Before we went inside, she pulled down her driver’s visor vanity mirror and put on some lip gloss. One of her sons commented on how she always did that. She matter-of-factly responded, “Of course I do! I want to look good for my man!” I don’t think she ever disappointed him. He had always thought she was the most beautiful girl in the world since seventh grade when they first met.
When they were young… (but older than 7th grade)
Jaclynette was a mother to three boys, now becoming young men. She homeschooled them all until they reached high school. (Her baby, now 11 years old, is in his last year in elementary school.) When our family first moved to Maryland for Kyle to serve as the church’s Associate Pastor of Worship and Family Ministries (her husband was the senior pastor), I was homeschooling my oldest in kindergarten. She was such a great support and encouragement to me. She took me to events of the homeschool co-op she participated in, especially the school supplies sale where families sold their used textbooks and resources. She knew where to find the best deals, and she was generous in sharing her own resources.
Jac loved hosting people in her home. She could have written the book on hospitality. She wasn’t so much of a formal hostess who served her guests (though she did that too!) as she was simply making her guests a part of her family. She was happy to serve them, but she also wanted them to feel at home. One of her close friends tells the story of the first time she went to the Broadhurst home. The first thing Jaclynnette said when she answered the door was, “Do you know how to make cookies?” She grafted in that friend to her family, and she became like a sister to Jaclynnette and Jace, and an aunt to her boys. She made all who crossed her front door threshold feel like they were at home. She had a heart especially for our youth, and she reached out to them, mentored them, and made them a regular part of her family life. Two of them spoke at her memorial service of the great love she had given them.
Having never been in ministry before, she was my role model for what a pastor’s wife looked like. Our church never placed heavy burdens or expectations on us as pastor’s wives, and she didn’t do it to herself either. She encouraged me to just be myself, which is like telling a tree to have leaves. Done. When she smiled and talked happily with people at church, she wasn’t putting on airs. She was smiling because she was truly happy. She didn’t over-burden people with her struggles when she had them, but she didn’t completely pretend they weren’t there either. She was genuine and real.
Jac was a serva
nt at heart. She had always wanted to be a missionary, which is what kept her from marrying the man of her dreams for so long because he wasn’t as convinced of that life for himself. She did become a missionary for a while though in Kenya as a single college graduate. Eventually, after marriage, she and Jace did go to Kenya together as he taught at Scott Theological Seminary for a year. She stayed at home with their two oldest boys. Her third son had not yet come. About 9 or 10 years later, they went back again and took eight other people with them for a church mission trip, including all three of their children. My husband and I had the privilege of being a part of that mission team. I had never had an ounce of desire to go to Africa before I met the Broadhursts. But it was the most amazing two weeks, including seeing lions walking next to our vehicle on safari.
And somehow, that crazy woman talked a few of us women into riding on the back of a motorcycle back to the seminary campus from town behind some Kenyan guy. I’m telling you – she made the most out of every opportunity. Every day held a new adventure, and she took as many people along with her as possible.
Their family (minus their youngest) went on a mission trip together to China two summers ago (2014) when Jace was invited to teach at a university for a couple of weeks. Jaclynnette jumped on the opportunity to teach English to Chinese students. I know in the short time they were there, they reached out and ministered to several students. And of course, had a blast sight-seeing. What a phenomenal way to spend vacation!
Crepes in downtown Annapolis
As fellow pastors wives, we attended a Ministers Wives retreat almost every year together in Annapolis. There were a couple of years we missed, but it was something we both looked forward to each April. We only lived about an hour away from where the retreat was held, but we stayed in the hotel where the conference was hosted as a girls getaway weekend. We would drive into downtown Annapolis right on the harbor and find a place to park, then walk the cobblestone streets of downtown. We found a new place to eat every year. Then we’d have fun shopping in the cutesy shops, and occasionally we’d surprise each other with a gift we picked up behind the other’s back. Last year, she bought me a tervis cup that had yellow hearts on it and said, “Sunshine Sweet Tea”. They also had autism awareness Tervis cups, and she gave me a choice to pick from the two. She said, “You can pick one, because everyone needs a Tervis. I know part of your life and your passion is autism awareness, but I also know that you’re more than that, and you’re Sarah who loves tea. So, this is the one I’d pick for you if it were up to me, but I want you to have what you want the most.” I’m so glad I chose the one she would have chosen for me.
We had our favorite shops we’d always go in, and one of the things she loved to do was pick out cards (the ones with old black and white photos of real people with funny captions) so she could send them to whomever as encouragement, or for special occasions. Last year, she bought cards to mail to Jace’s mom, Sue, who was (and still is) battling cancer. Jac had been in her shoes just a couple years before when she went through her first course of cancer treatment, and tears welled up in her eyes as she picked out just the right cards. I don’t know if she ever got a chance to send them. But Sue, if you’re reading this, you were never far from her mind. She loved you so much, and she wanted to encourage your heart. Whether or not you ever received those cards, know that both the intentions and the love was ever present in her to love you well.
At the retreat, they had classes during breakout sessions with various topics. Some of them were serious, like dealing with parenting issues or finances, and others were more crafty in nature. There was also usually a spa night, and we did hand paraffin waxes together. 
Jac rarely took the serious classes because she considered this her time of refreshment and enjoyment. Sometimes she skipped altogether just to relish in taking a nap in our room without interruption from kids. One of the classes we did together was a painting session. We each got a canvas and they taught us in one hour how to paint a particular picture, so everyone painted the same picture, give or take a few flowers. We were at the back of the class, cutting up together. Sometimes we would miss what the teacher said, and Jaclynnette would just do her own thing. At the end, we had a pretty background on a canvas that we could fill in later as desired.
I would have never guessed I would use that canvas to remind me of my friend years later.
That canvas hung on the wall in my bedroom for a couple of years, blank, because I could never decide what to put in the middle of it. Maybe a Bible verse, or a quote…? I couldn’t make up my mind. But now, during the writing of this tribute (which has taken a few months), I finally decided what to do with it. I had created several canvases with quotes from C.S. Lewis to be displayed at her memorial service. They were gifts to her family and her close friends, so I didn’t bring one home with me.
But I had my own. Taking a verse from the memorial service, I chose Psalm 16:11, “In Your presence, there is fullness of joy.” It hangs in our living room, and is the perfect way to honor the memory of my sweet friend. It brings a smile to my face every day I see it.
She was such a thoughtful friend. If she saw a little something somewhere that she knew someone would love or appreciate, she would get it for them. (Sometimes, it wasn’t so “little” either.) She wasn’t a lavish spender, but she was incredibly thoughtful. Last year, she gave me an elegant teacup ornament for my kitchen Christmas tree. She saw the teacup and thought of me, so she got it. I have seen her give gifts to others for the very same reasons, like this cupcakes decoration for a friend who loves cupcakes maybe more than I love tea (so, a LOT!) Just because she thought of them and knew they’d appreciate it. 
I hope she knew just how much those little gestures meant to us all. It didn’t matter whether she found the gift for free or paid any amount of money for it. I think I can speak for those of us who were recipients of her gifts in saying that we felt special simply because she thought of us, and did something to let us know how much she cared for us as friends. Sometimes there were gifts. Other times, there were notes or emails with a few sweet words just to say she was thinking of (and also usually praying for) us.
I have too many memories and photos of my sweet friend to write here – and I only knew her for six years. And there are thousands of memories stored
up in the hearts of hundreds of people whose lives she touched all across the world. From America to Africa, China, Trinidad, Belarus, Venezuela, and Brazil, I’m sure that many of those memories are being given new life now as we grieve the loss of a beautiful friend, teacher, sister, daughter, wife, and mother. I remember how she talked longingly of worshiping her Savior alongside people from every nation, tribe, and tongue. Now, she is experiencing that which she so desperately longed for on this earth with that little sparkle in her eyes. She is where we all long to be. Jaclynnette is home.
Rejoice, dear friend, and rest. You’re finally home.
The post My Dear Friend Jaclynnette: A Tribute appeared first on Hope in Autism.
]]>The post She Just Sees Sam appeared first on Hope in Autism.
]]>
I was really hopeful after such a great day yesterday. It had been a full Saturday for Sam. He went to a new soccer group (his very first!), got his hair cut, and had an ice cream date with me. It was one thing after another, and that’s a lot to process. He had a great evening too. We had family devotions that didn’t end with my husband in the fetal position wondering why our kids can’t get it together for 5-10 minutes without breaking down into fits and tears. Sam even had a bath. But then, just minutes before lights out, one shoe dropped.
Confusion over the allowances during quiet time turned that glorious day on its head. Quiet time is a period of 5-10 minutes prior to lights out when all children must be IN their beds. They can read or play quietly (hence the term, “QUIET TIME.”) But when an exception to the rule was made the other night, confusion ensued last night as he expected the same treatment. There was a lot of yelling, and a very frustrated parent who stood outside of his bedroom door, ready to throw in the towel.
This morning was going great too. I didn’t have to drag Sam out of his loft bed – not an easy feat to accomplish with a 9 year old 12 inches away from the ceiling on a thin ladder. He got up on his own. Got dressed. Ate breakfast. Nice to brothers. Followed directions without argument. He did a great job in Sunday school, thanks to a second teacher who is able to devote extra help as needed. He sang in church with gusto.
And then… the other shoe dropped. It didn’t take long once the pastor began preaching. It was just little things here and there that grew too big to ignore. “Stop kicking the pew; I’m sorry, but I can’t give you popular names that start with every letter of the alphabet while I’m trying to listen; Lower your voice; If you can’t be quiet, then I’ll have to take you out.” Except he’s insistent that he’s not loud, and is quite loud in the process.
My inner dialogue is something like, “I’m missing what the pastor is saying. He just said something that made people laugh. What was it? Oh, oh, oh, this is one of my favorite passages. And I’m missing it. I hate missing things.”
Kyle and I exchange looks – the ones that say, “I told him this is the consequence for this action; now I HAVE to act on it. But I really don’t want to;” and the response look of, “Do you want me to handle it? I’ll handle it for you. Just say the word. But we’ve got to do something.” So we did. Because as parents, you do what you have to do.
After an indeterminable amount of time had passed where my mind was completely free to focus on the sermon, Kyle returned with the boys. (Because it wasn’t just Sam who was having issues.) Several minutes later, a very penitent, tearful Sam hands me a note apologizing for his behavior, asking forgiveness and telling me he loves me. After a couple minutes of considering how sincere this note really is (because maybe it’s a form of manipulation?), I respond in kind. He leans his head on me. As I stroke his back, I know it’s over now.
But the thought in my head sighs, “Why does this have to be so hard?”
After church, a very dear friend (who also happens to be Sam’s Sunday school teacher) strikes up conversation with me. She told me how great he did in class. She’s excited to use the visual schedule I made for her class (and specifically for Sam.) I started saying how I’m just trying to put as many helps in place as possible to make Sundays as smooth as possible. But that after today, I feel like nothing works. I keep trying to have consistency, and make sure that he understands the rules and consequences ahead of time. I keep trying to stay calm. To be patient. To be understanding. But I’m always waiting for the other shoe to drop. I can’t assume that a good day on Saturday means a continued good day on Sunday. History shows I can actually expect the opposite. But I don’t like pessimism. I keep praying and hoping and striving for the best. To lead him in the right way. And when he doesn’t go in the right way, I wonder where I went wrong.
As I talked, I sat back down crying as I hid my face with my kids’ papers from Sunday school. It was all too much. I felt her hand on my back and I heard her words. She’s not the sit-and-be-quiet type. Not usually. When she’s passionate about something, she talks. Passionately. So she’s telling me how great Sam is. How great of a mom I am. How far he’s come. How much he’s grown.
I wanted to tell her to stop talking. I don’t need the words. I can’t hear most of them anyway. Just be quiet. Just sit with me. Just let me cry. You don’t get it. You can’t understand. Please… just stop.
“I know that autism affects everything he does. I know that’s hard to deal with sometimes. But when I look at him, I just see Sam.”
She just sees Sam. And I realized in that moment that I was back in Grief 101. I knew grief was a cycle. I have written and talked before about finding yourself at any place in the cycle at any moment. Here I was. Back at square one.
But I wasn’t alone. I had a friend who could see in that moment what I couldn’t. He’s just Sam. He struggles with autism day in and day out. But he’s growing. I wouldn’t have gotten a note a year ago expressing sorrow and requesting reconciliation. Now I get one nearly every time he has a meltdown. He has professed faith in Christ, and he shows evidences of true faith. God is doing an incredible work in the life of my son.
Sometimes, the shoes drop. What a blessing it is to have someone there who helps you pick them back up. Thank you, friend. You know who you are.
The post She Just Sees Sam appeared first on Hope in Autism.
]]>The post Remembering From Whence We Came appeared first on Hope in Autism.
]]>Today is World Autism Awareness Day. It is only the 3rd health issue to receive its own day of recognition that was unanimously voted on by the United Nations General Assembly in 2007. Nationwide, city buildings and private residences will be “Lighting it up Blue” in honor of those affected by autism and to raise awareness of what is now known as a national epidemic in the US with 1 in 88 children diagnosed with autism. 1 in 54 boys are diagnosed, and 4 times more likely than girls to be diagnosed. When girls are diagnosed, their diagnosis is usually more severe than that of boys. Learn more about autism – early signs, symptoms, it’s effects on functioning and skills and treatments here.
Today I want to take a little time for myself and remember. Remembering 6 years ago when all I knew was the sweet love for my precious newborn boy. I remember when disability was nowhere near being a part of our world. We were simply very proud parents of 2 incredible kids. I remember recovering from my C-section because Sam was a few weeks early, breech, labor wasn’t stopping and it was too late to try to turn him around. Once home, I laid on the couch holding his warm, tiny body and we’d stare into each other’s eyes. Kyle and I used to say his eyes pierced our souls. It was as if his eyes were telling a story, full of beauty and mystery mixed with colors of stone grey and blue, drawing me in to search deeper for answers to the se
crets only he knew.
I remember how he giggled and laughed and squealed when he was happy and discovering new things for the first time. I remember helping him sit up and stay sitting, which gave way to crawling because sitting still was just too boring. He was a little late in walking, but finally met his milestone barely on time at 15 months. He was non-verbal, though I remember him saying both “Mama” and “Dada” at least once, but then never again. The pediatrician said it was common for toddlers to “master” a word by using it once, and then not using it again for a while. But Sam never had any other language… except screaming.
Ah, the screaming. I like to describe it as velociraptor (think Jurassic Park – the cute little guy in the forest, but who then lets out an ear-piercing dinosaur screech before devouring its prey) mixed with a screech-owl. It was how he cried all the time. He didn’t really have varying degrees of crying like most babies do to differentiate between hunger, need for a diaper change, being uncomfortable or hurt. It was always the same fingers-on-a-chalkboard scream for everything.
I remember how horribly upset he would become at the slightest infraction. If one of his perfectly lined-up toys fell over, or was moved by a second party, his world was upended. He would scream, and the most frightening part of his tantrums was his head-banging. He would run to the front door, or get down on all fours and slam his head repeatedly against the hard floor surface.
He didn’t seem to be affected by the pain until later. Eventually, I think he realized the wooden door, hardwood floors and ceramic tile kitchen floor actually hurt, so he changed to banging his head against the sofa cushion instead. If the sofa cushion wasn’t readily available, he began using his hands and beating them against his head. It was one of the most painful things as a mother to watch my son purposefully hurting himself.
I remember his incredibly picky eating and extremely limited diet and both the pediatrician and nutritionist said that despite the saying that kids will eat before starving themselves, Samuel was so severely impacted that he truly would starve himself and end up in the hospital from his refusal to eat. We had no choice but to give him whatever he wanted whenever he wanted just to get calories in his body. He still drinks only chocolate milk because he refused regular non-flavored milk for the past 5 years.
I remember coming to my absolute end one day when he was in his high chair refusing my peanut butter sandwich and wanting goldfish instead. I was trying to get him to take a bit of sandwich, then reward him with a cracker. But he began screaming incessantly, wailing on himself with both hands and throwing himself from side to side. In tears, I called the only person I knew who could help, my friend Amy Bruscato whom I knew worked with special needs kids. I didn’t know exactly what she could do, but I figured that of all people, she would know what to do. I cried to her telling her what was happening, fearful of what I might possibly do to my son out of such desperation. She had just had her first baby, but she told me to hold tight and leave him in his high chair if he was safe and she raced over as soon as she could. She sat with him, patiently talking with him, teaching him signs for cracker, please, and more as I watched in awe, and he actually used the signs to communicate instead of screaming.
I remember going through a hearing and speech test at Children’s Mercy Hospital. I remember praying that my son was deaf during the hearing screening that would be causing his delay in speech and non-responsiveness. I thought I could handle learning sign language. I couldn’t handle some kind of neurodevelopmental disorder… or so I thought. I remember learning that at 18 months of age, Sam was at a 50% delay in speech – which means he was operating on the level of a 9 month old.
I remember beginning speech and behavior therapy 6 hours a week and having our lives invaded with words like ABA, manding, signing, stimming, echolalia and more terms that all meant something was wrong with my son. But I also remember – fondly – the sweet Christ-like spirit of our therapists, my friend Amy and her speech therapist friend, Shannon. They were so patient with Sam. They seemed to really love him, and something I had a hard time doing – enjoy him. They taught me how to do that. They listened with compassion when it was too much for me and let me cry. They encouraged me like cheerleaders through holding Sam during terrible tantrums when he tried to hurt me as tears ran down my cheeks. When they praised Sam for his progress, they also praised me. We were learning. We were growing. Sam’s language grew; my enjoyment of him grew.
I remember 5 months after beginning therapy when we received the official diagnosis of autism – moderate/severe borderline. I sat across from the psychologist who made this determination after just two hours of testing and grading, numb to her words. I remember asking what to do now, as I would ask a doctor upon diagnosis of an illness, expecting an answer. She had none, except to say, “Keep doing what you’re doing now in therapy. Good luck to you.”
I remember my husband and I clinging to each other in tears over the cataclysmic change that had just taken place in our lives against our wills. I remember my mom reciting Jeremiah 29:11 to me, that God had a plan for our son, to give him a future and a hope. That he was created just as he was, in the image of God, and that everything would be okay.
I remember a thousand things about the life of my Samuel James thus far, both positive and negative. I don’t think I should choose only to remember the good things, because it’s in remembering all the challenges and seemingly impossible trials we thought we could never overcome that we’re reminded “from whence we came”, and how far we’ve come together. I never thought he would be able to talk in regular conversation with anyone, or know how to express love and emotion (especially appropriately), or read or write, or have friends. Yet he has accomplished all of these things and MORE! God has been so good to our son and to our family. He has caused so many things to work together to bring Sam to where he is now: mainstreamed in 1st grade, smart beyond belief, able to read above grade level, writing very well for his age, funny, many – though obsessive – interests, friends, and even making his own choice to give me a hug and kiss, just because he loves me.
There’s nothing special about our family that would cause God’s favor to rest on us. We have been lavished with grace, and we are so thankful for what we have. I can’t compare our son and his degree of autism with anyone else, whether more or less severe, because autism is still autism in any family. This is our story. It might look similar to others’ stories, or better, or worse. But it’s our story just the same.
I can’t wait for the day when I remember back on this time and the terrible week we had last week, the tears I cried both alone and with my husband because it just hurt so darn much. I’ll have to try harder to remember the times like last night when Sam snuggled against me on the couch and just sat with me quietly. Or the “normal” conversations we’ve had as a family at the dinner table, or watching him color his flags in utter contentment and the pride he takes in his creations taped to his wall. But I’ll still remember.
I’ll always remember.
The post Remembering From Whence We Came appeared first on Hope in Autism.
]]>The post Chicka Chicka 123 appeared first on Hope in Autism.
]]>To be honest, I’ve been in the “ebb” part of the ebb and flow of grief – the part where grief pauses and takes hold of my heart. There have been many days and nights where I’ve simply allowed sadness and frustration and fatigue and pity to take over. Even though that truly is part of my life, it’s not always how it can best encourage others who may be going through the same thing. I like to think that when I write, it is something great and profound that ministers to the hearts of the few who read it. The reality is probably less impacting as I hope, but I write because it is often what ministers to my own heart. Somehow the words on the screen, though typed with my own fingers, become something apart from myself that speak back to me.
You might not think special needs or autism, even higher functioning autism, is really that big of a deal. That’s okay. Maybe it’s not. But there is something in your life that is a big deal. It’s different for different people. For me and many others, having a child in the world of special needs is our big deal. One of the biggest challenges is the constant struggle of letting go. We’re not just letting go of our kids as they get older like every other parent, we are also letting go of certain expectations and notions of what having kids would be like. Perhaps some parents thought their son would go to T-ball and be in Little League or that their daughter would be in ballet, or maybe be involved in music and arts, but a physical disability prevents such dreams. For some parents, simple communication is no longer an option and learning sign language replaces using words. Still others will wonder if their child will ever be able to add simple numbers or learn how to read because of a mental disability. Will our children have friends? Will they know how to laugh appropriately and tell jokes? Will they understand our love for them and be able to love us back? Will they ever drive? Go to college? Graduate? Establish a career, or even simply hold a job? Will they marry and have children? These are questions I think every parent asks, but they are more initmidating questions for the parents of children with special needs. The answers hold still more frustrations when our expectations – or our children’s – are not met, or they are met differently than we thought or wanted. All of this brings about grief. We grieve the “normal” life we thought we’d have, whatever that means to each of us, that will no longer be ours after the discovery of our child’s special needs. We’re forced to find a new “normal” for our family while we watch the world of “normal” pass us by in a parallel world.
This post is not about describing the grief process, or grieving aloud over my son’s life or our life in the new “normal” we are blazing for ourselves. Rather, I pray it is a testimony of the greatness and sweetness of being a parent. I grieve, yes. But as I was reminded this week, I also rejoice. There are times when all I can do is cry and say, “It hurts.” I have no words, I’m just sad.
As an adult, I like to think I’m strong and that I’m a big girl and I don’t need my mommy. But in those moments (and others too), sometimes I just want to hear my mom’s voice. I have usually exhausted my husband by this point (though he tells me it’s impossible), but when the tears just don’t end, I will retreat back to my 7 year old self and crawl back into my mom’s lap by calling and crying to her. She’s pretty great about it. She doesn’t audibly sigh as if I’m bothering her, like, “Again? She’s calling again?” Maybe she thinks it, but she doesn’t let me know it if she does. She simply says, “I know, I’m sorry.” She just lets me cry. She’ll ask questions to see what’s going on and will simply listen. But then she reminds me of the really great things about Sam.
This past week, I was really wrestling with the numbers of all of Sam’s recent test results from school. His IQ was vastly different (and much lower) than his last test when he was diagnosed 4 years ago. I was baffled. I didn’t understand how it went from 127 down to an 86. The 20 or more numbers of the various tests and subtests were swirling about in my head, all screaming at me, “He still has autism!” Even though I know it’s not going to go away, reading the summary reports was like getting the diagnosis all over again. All of a sudden, all the good things I heard from his teachers were nowhere in the results of these tests and questionnaires. Just the negative. It was actually an answer to prayer because in order for him to continue to receive the necessary services, his disability code had to change on his IEP from developmental delay to autism. The good news is that his code is changing to autism because all the results show his symptoms are still congruent with that of autism. The bad news is… the results show he has autism.
Mom asked me if I was please with his success this past year, if I saw progress. I had to think about the great strides he really has made. When I recounted them to her, she told me to think about those things and reminded me the tests are for a particular reason – to get him the services he needs. It’s not to point out all his challenges in order to rub it in that he’s different. It’s for his good. Yet, what is meant for his good is just painful to go through as his mom. Those numbers sting my eyes and bring a lump to my throat.
Isn’t that how anything in life goes? Most of what is for our good is painful. Exercise is for our good, but it’s painful. Discipline is for our good, but painful. Healthy eating is for our good, though sometimes not very tasty. Medicine can bring about terrible pains and side effects, but it is for our good. Shots hurt for the moment, but prevent terrible diseases in the long run.
The long run… I’m reminded of James – “Consider it pure joy my brothers when you encounter trials of various kinds because you know the testing of your faith develops perseverance.” The hard thing about perseverance is that it’s not a one-time thing. Much like grief, it can’t be dealt with once and immediately accomplished. Perseverance implies and involves time – often, a lifetime. James again says, “Behold, we consider those blessed who remained steadfast. You have heard of the steadfastness of Job, and you have seen the purpose of the Lord, how the Lord is compassionate and merciful.” I must persevere in hope – rejoicing in the compassion and mercy of the Lord in the work He is doing in my son’s life.
A favorite passage of mine is Romans 5:3-5, “…we rejoice in our sufferings, knowing that suffering produces endurance, endurance produces character, and character produces hope, and hope does not disappoint because the love of God has been poured into our hearts through the Holy Spirit who has been given to us.” Autism causes much suffering. But the suffering it produces causes me to persevere in it until joy is felt in my soul. It is then that awful word that I hate and despise is able to somehow rest side by side with what I know is the goodness of God. With each visit from grief, God is growing me because I am dependent on Him to grant grace through hope and contentment. And I know His hope will not disappoint me. I will continue to grieve, but, I will also continue to hope in the good that He has done and will continue to do in the precious life of my son and in my own heart. For every one hundred different reasons to grieve, there are another 100 reasons to rejoice.
As my mom said after asking me to think back on much of Sam’s progress, “Forget about the numbers. That’s a reason to praise the Lord!” Whatever the “numbers” in your life, forget about ’em. They’re just numbers anyway. There are reasons – if only one – to praise the Lord. What is it? Persevere in that.
The post Chicka Chicka 123 appeared first on Hope in Autism.
]]>