I didn’t know what to expect.

December 20, 2007 was the day of our appointment. I didn’t know for sure what was coming, but I had a pretty good idea. After hours of testing, even re-testing to make his score better, the psychologist sat with me in the empty waiting room highlighting the border between “Moderate” and “Severe” on the very simplified scale of the Autism Spectrum Disorder according to the DSM IV at the time. She told me my son was on the border of being severely autistic. I asked her what we were supposed to do, and she compassionately shrugged her shoulders and told me to keep up with the therapy he was already in. That was it.

I don’t know what I thought would happen at the end of that appointment. But I left with a bit of relief that we finally had an answer, a twinge of guilt that I should have done this sooner, and a knot in my stomach not knowing what to expect for the life of my son.

I didn’t expect this.

It might sound strange, but I struggle a lot with guilt at this stage. Guilt that my son is in the position he is currently in, while friends with children with the same diagnosis are living a completely different life, but one that we used to know in the beginning of nonverbalness and meltdowns and confusion and grief. There was joy in the little things, but all the “little things” to everyone else were huge things to us.

Things like enjoying snow falling on his face, compared to previous years of meltdowns because water dared to grace his skin. Imagine walking from the car to the house in the rain because we didn’t have a garage with a child whose sensory system became overloaded from a light sprinkle. Let’s not discuss bathtime or hair washing.

Our saving grace? Movies.

Kids love movies. Oh, but Sam  l o v e d  movies. Movies were safe. There was a clear beginning and a clear end with occasional surprise post-credit scenes. There was fun stuff in between with sounds and music and visual effects, and lovable characters sold just down the road in Target’s toy aisle. We lived in the magical world of Disney’s Cars for years. He hates to admit it now, but he was obsessed with Frozen too. He didn’t just watch these movies. He immersed himself in them. Sam stims in a way that is called scripting. He memorizes the lines and then acts them out, imitating each character’s voice with their lines. Verbatim. He still does it to this day. It helps him process and get things out of his system.

I didn’t know what to expect.

I have a very clear, distinct memory of watching him script Cars one day, as he flew Lightning McQueen through the air, shutting one eye tightly closed to get a good look at him in the light right in front of his face while mimicking, “Kachow!” I was partly enjoying watching him delight in his imaginative play, partly fascinated by his memory as he scripted the lines perfectly, and partly grieved, wondering where he would end up one day, what he would end up doing, who he would be, and how God would use him to impact the world.

Because everyone has an impact on the world around them, seen or unseen.

I remember thinking that it would only be fitting if somehow movies played a part in his life one day. Maybe the Lord would redeem these years, these moments of immersion and perseveration, and maybe Sam would play a part in creating movies that other kids and adults alike would find themselves immersed in too. I remember thinking how cool that full circle story would be. How maybe it would somehow redeem all those years of hard.

I didn’t know what to expect. But here we are.

Sam has come so far since that first date of diagnosis. He’s fully verbal and has been mainstreamed in school. We had a brief stint of a few years where homeschooling became necessary and then he entered high school mid-year when we moved to Indiana in 2020. He was a cross-country runner from elementary school through his junior year. He is an incredible photographer. And he’s still obsessed with movies. He graduates high school in less than two months. He decided he wants to pursue cinematography and make movies. He wants to create worlds for others to get lost in. Characters they will both love and hate, and love to hate, and hate to love, and love to love. Movies provided a way for him to understand and engage with the world. We understand more about life by watching parts of it play out on a screen. We engage with others because everyone loves movies. Movies gave him a language he didn’t have on his own. It’s what he based his college essays on. They were beautiful.

I didn’t know what to expect as he pursued some of the top cinematography schools in the country.

He applied and was accepted to Savannah College of Art and Design (SCAD,) Emerson College, and Columbia College Chicago. He made a valiant effort and went through the incredibly tedious application process for NYU but was denied. Their loss.

He has made his final decision and has accepted the invitation to be in the BFA (Bachelor of Fine Arts) for Film and Television at Columbia College Chicago. The BFA is an invitation only a selected few receive. He was one of only four individuals in our state to be accepted out of over 400. He is one of only a couple hundred out of the thousands who applied for the program across the country. His GPA of 3.94 made him eligible for the honors program, and he has accepted that as well.

I don’t know what to expect.

I’ve already launched, as they say, one kid into college. His older brother Ben is currently a freshman pursuing film scoring and composition at Berklee College of Music in Boston with a full tuition scholarship. Emerson would have been a 12 minute trip between the brothers had he chosen it. But now, we’ll be launching this kid straight into the heart of Chicago, a little over 5 hours away (instead of over 15, so I’m okay with that.) He doesn’t have a full tuition scholarship, but it’s fairly close, all things considered. We are so grateful for that.

It’s strange business, this whole letting go thing. I’ve always managed every part of Sam’s life. Always. This isn’t to say I was completely alone as our family and friends and churches we’ve been a part of have been an army of support that we couldn’t have managed well without. But day to day? I made the appointments. I learned all the therapy things so we could continue what he learned in therapy all the rest of the hours of the week at home. I fought insurance. I lobbied for better services. I educated everyone about autism. It’s why this blog even exists. I went to every IEP meeting. I called meetings with teachers and principals. We took him out and about because he can’t live at home in his room in quiet movie-induced solitude forever. Turns out, he’s a bit of an extrovert like his mom. He needs people.

That’s something not expected of people with autism. They say the opposite. But autism is never what you expect. Sam has always surprised us.

I’m the one who suggested photography when he showed interest in a career in movies but was too overwhelmed at all the possibilities – producer? director? cameraman? visual effects? I found him teachers and mentors who taught him about the art of photography because it seemed to make sense that he would need to know the rules of photography in order to understand the rules of film. We took him wherever he wanted to go for a good photo shoot. We turned him loose in D.C. for the day because he needed to get the perfect sunset shot of the Washington Monument. (I’d show it to you, but I’m currently not allowed to share images until he edits them in order of when he took them. Maybe in a couple years I can show it to you.)

I helped him look at colleges that had both the type of program he wanted that fit the criteria of being in a big city (that was a thing he really wanted,) and also had accommodations he would need. I made phone calls and sent emails to ensure we were preparing as best we could. We filled out forms and had meetings and sent in applications for academic and single housing accommodations with official proof for why all of it is  needed.

I don’t know what to expect.

He’s not guaranteed the type of housing we are asking for. He’s had about a minute’s worth of learning how to navigate public transportation in Chicago itself, and he’ll have to do far more of it without us standing right beside him showing him how to do it. Our oldest called me one time from a bus stop in Boston asking me about what he should do and where he should go to get back to campus. I was completely helpless. I couldn’t tell him which bus to get on, or what time it would be there. It wasn’t lining up with what his information was telling him and he was confused. It was very late at night, and we were both starting to get anxious for him to get back to his dorm. But he figured it out and arrived safely about an hour later, confirmed by text I made him send me so I knew he wasn’t dead in a ditch.

I don’t know what to expect.

Will Sam call me in a meltdown because he’s lost? How will I help him? “He’ll have to learn how to help himself,” I can hear you say. Yes, I know. But this is different. What if he’s misunderstood by strangers and something happens?

What ifs can start to bleed into paralyzing fear, if I let it.

When discussing what to do about college back in the fall, I was using the metaphor of baby birds learning to fly as mama birds pushed them out of the nest. Emotions welling up, he asked me, “But mom, what if I can’t do it? What if I fall?” And I jumped on the opportunity to use the ever so trite cliche and in all seriousness with tears of my own replied, “Yes, you might fall. You’ll probably fall a lot. But Sam… what if you fly?”

I have always had high expectations of Sam, despite his autism, sometimes because of it. I knew he’d do well when he landed big roles in theatre because memorization is kind of his thing. And he was amazing. I have always pushed him harder than maybe even my other kids. I never wanted him to think or ever believe of himself that he couldn’t do something because he has autism. I never want anyone to put him in a box that says autistic people have to do things this way. I didn’t want him boxing himself in either. I’m okay with other ways, as long as it’s what is truly needed. But sometimes those other ways are just safe. Sam’s not safe, meaning he’s always taken risks. He’s always put himself out there, even if he’s afraid he’ll fail. Most of the time, he succeeds and even thrives.

The safest choice isn’t always the best choice.

It would be safe for him to just stay here and never leave. It would be safe not to teach him how to drive. It would be safe to tell him to stay in the backyard and not take walks next to busy roads (on a sidewalk. He’s not walking the shoulders or hitchhiking, I promise.) And I never wanted others to think we don’t hold him to the same standards as his brothers. We do, but sometimes it looks a little different. Autism has been a valid reason for why he has struggled with things, and will continue to struggle. There will always be challenges and there will always be progress and five steps back and two steps forward or one step back and 10 steps forward. But it’s never an excuse to get out of taking those steps anyway. We might give him some grace with some things. Everyone needs grace. But he doesn’t just get a pass. Professors and bosses and directors and producers won’t just give him a pass. He has always worked hard for everything he has achieved, and I have no doubt he will do the same in college and beyond. I’ve been there for all of it. And now for the first time, I won’t be. That’s a scary place for this mama bird to be in. But it also holds so much hope. 

So when I start down the road of negative what-ifs, I try to remember to ask myself, “Yes… but what if he flies?”

I don’t know what it will look like. But I expect that he will.

If you want to help Sam in his college journey, he has applied for a scholarship and written an essay called “How Movies Helped Me as an Autistic Person” that has been published on the scholarship website below. The decision for the winner will be made in part based on how much engagement his essay gets, meaning how many people click the link to his essay. While I truly don’t like making requests like this, we would greatly appreciate any support by clicking the link to read his essay. If you want to go above and beyond, please also share it on social media. I would love it if you would tag @hopeinautism so we can track it as well, though that part is not necessary.

How Movies Helped Me as an Autistic Person

This guest post is by Samuel Broady, a young man who was diagnosed with autism at 2 and plans to attend Columbia College Chicago. Samuel is applying for the Spring 2023 Making a Difference Autism Scholarship via the nonprofit KFM Making a Difference.

The post Great Expectations appeared first on Hope in Autism.

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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 servant 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 secret? A scrim. The image above shows a crucifixion scene set up behind the scrim that is only visible to the audience when lit from behind. If the light behind the scrim was not on, all you would see is the Roman soldier in the blue light, lit by a spotlight in front of the scrim.

Read more about the scrim of disability and the work God is doing behind the scenes at my writing home today, Special Needs Parenting.

How do you see God at work in the heart of your child with disability?

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“Oh, no. Oh, no. Oh, noooo!!!!” The wails started within minutes after dinner had ended. As is our habit, we waited to hear if it was over, or just beginning.

It was just beginning.

The day had gone well. I had taken Sam to a research study that was scheduled in the afternoon. For three hours, he played with clinicians for testing that helped them better understand how children’s brains with autism work. While he did that, I filled out about eight different forms about his development and current strengths and weaknesses while connecting to their WiFi and watching Netflix. I promised him a new toy if he did really well, and he worked very hard. He was paid $30 in cash for his participation, so he had money to go shopping with when he was done. (I got $10 just for filling out those forms!)

He picked out a new Lego set and skipped happily alongside me as we walked down the sidewalk of the outdoor shopping center. I held a large shopping bag in one hand, and Samuel’s hand in the other. Both of my hands were full, matching the state of my heart. I felt myself smiling inside and realized I had a giant grin on my face as we walked along. He let go of my hand, jumping around and making funny noises, and I smiled even more, delighting in my son.

It was dinner time when we arrived home and it was a peaceful meal filled with laughter and good conversation. As it wound down, Sam politely asked to be excused and cleared his dishes from the table to the sink. He hadn’t had time to put his new Lego set together before dinner, but he had opened a couple of the bags to find the minifigure parts to piece together before I realized what he was doing. We had cleaned up the pieces and put them in a sandwich baggie to store in the box, which he was now taking out in his room. That’s when the wails began.

Kyle and I looked at each other from across the table, silently exchanging the look that said, “Do we wait, or go find out what’s wrong?” Sam began to cry and wail louder, forcing me out of my seat to go to his aid. A Lego piece had fallen off his table and he couldn’t find it. I quietly told him I would help him look for it, but that he needed to calm down and take a deep breath. He continued his exaggerated breathing instead, and insisted I could not help him because I didn’t know what the piece was. He couldn’t describe it to me as not even he knew which piece it was. He didn’t know what color or shape it was, only that it was “tiny.” I told him we’d look for it anyway and assured him we would find it. But that would have to wait now, as he had entered meltdown mode. I followed our normal protocol of removing him from the situation to “take a break” until he was calm enough to go back and search.

Samuel HATES taking a break, but I know how much worse it will get if he does not first calm down, so that was my job, which required moving him away from the Legos. This did not bode well for either of us. His meltdown lasted a full hour, during which he got as close as he could to scream his loudest in my ear. His body was unstable on his bed, and I had no choice but to steady him while turning my head to lessen the audible blows – twice. A couple times, he jabbed me in the ribs with his elbow to let me know how mad he was. With a stone face so as not to reinforce his behavior, I repeated my instructions to him as I blocked his elbow with my hand.

After more severe behavior with both myself and Kyle, we had finally succeeded in physically dressing him ourselves and putting him in bed. Miraculously, he was quiet, and Kyle and I sat together on the couch in a kind of shock after what we had just gone through. Our hearts ached, and we talked through what it meant to enter his suffering with him, to love and comfort him as we speculated his likely fear and confusion in his extreme behavior. How were we to reach the heart of our child? The comfort we wanted to offer in the ways we knew how to comfort him was sent on a detour by autism. As we desperately tried to comfort ourselves and find a solution for the next time, we heard Samuel call out again.

I went to see what was wrong, and he said he was just stretching. As I turned to walk out of the room, he said, “Mom? I want to lay down with one of you guys.” I called for Kyle to come as I climbed into Sam’s bed. Kyle walked in and Sam told him he wanted us both to lay down with him for five minutes. We laid on his bed with our son sandwiched between us. Samuel turned over to lay on his stomach, and stretched out both of his arms across our backs in the shape of a “t”. After a few minutes, he told us we had one more minute and flipped over to lay on his back, still putting one hand on each of us where he no doubt was silently counting down from 60. He leaned over and kissed Kyle’s cheek, then turned and stretched to kiss me too before telling us we could go now. We told him we loved him and kissed him back and quietly closed his door as we left.

We hugged each other, trying to grasp the grace we had just experienced. I told my husband, “See? It’s going to be okay.” With tears in his eyes, he said, “No. It’s not ‘okay’…” his voice trailed off. Then with more strength, he added, “But at the same time, it is.”

This is the hope in which we walk. When the challenges and struggles of autism hit us hard, we do not despair. We continue to hope in the grace-filled moments like these where we feel and hear the whisper of God tell us that in the middle of it all, threaded through every fear and every tear, He is making all things new – little by little. He calms our fearful anxieties. He makes our tearful hearts smile. He turns the chaos to peace. He makes the struggle more beautiful because it ends with the sweet kisses of our autistic boy.

I write this not only for your encouragement, but for my own when the next meltdown happens that might not end in kisses. I write this to remind myself of the glimpses of glory I have seen with my own eyes and felt with the touches of my son’s hands and lips, that I might hope to see it again.

What glimpses of glory do you hold onto in your own struggles?

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Have you ever found it difficult to be satisfied with God, and only God? I do. I look to God to provide our needs, to protect us from harm, to grant joy in suffering and peace in the midst of the storm… but I am rarely satisfied just by His presence as I pour over His words to me, and by His Spirit He has put within me that works in me to will and to work for my good and His pleasure.

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I’m a bit nervous right now because the last two weeks that we’ve been gone, Sam has been doing GREAT! He’s certainly had his moments, and he still scripts quite a bit, still very restricted in his (and his brother’s) play, but I was so very proud of how he did with everything while we were gone. I say that I’m nervous because what we have found to be true with Sam is that in the midst of change, he handles it quite well. It’s after the change is over – like after we come home from 2 weeks at someone else’s house – that the behavior really escalates.

Yesterday morning as I was getting the van packed up, he was coloring his Cars pages that were taken out of a large coloring book he and his brothers all used. He had collected 16 pages, and was so proud of his work. (He really is a very good colorer – always has been!) He was walking around proudly telling us all that these were his 16 pages. Then the 16 pages were gone. He had put them down somewhere and could NOT find them anywhere! Neither could anyone else. He was very anxious, crying as he squeaked at me, “We’re not going to leave Indiana without my PAGES, are we?!?!!” I said no, praying I wasn’t lying. Thankfully, we found the pages. Pillows and blankets had been put on the counter on top of the pages, so as I picked them up to pack, I found his beloved pages. With that, he was calm again. But the day had only begun.

He did okay in the van. Traveling with kids is just not easy, and I don’t know of any family – autism or not – that doesn’t deal with bickering siblings as they shout threats from the driver’s seat. My drive was no different. Other than typical aggravations, the drive went pretty smooth. Thank goodness for a built-in DVD player!!

Now we’re home. Prior to our trip, ever since school let out, Sam has been one big ball of autism nerves. Tons of meltdowns. Random days of progression followed by more meltdowns and difficulties coupled with me being crippled under the pressure. On the trip, Sam decided he wanted to smile. This has been an issue with him for a very long time. He despised smiling, or anyone smiling at him. Suddenly, he was posing for pictures, smiling sweetly, sometimes even allowing Joshua (his younger brother) to look at him and smile which used to always scream at him for doing. He seemed happy in general, and I couldn’t get enough of it as I took advantage of every photo-op possible. It was as if one of the myriad thin autism layers was peeled back to display my son as I always knew he really is. What a victory!

But now I wait. Waiting with baited breath as I anticipate the meltdowns that, if the past has taught me anything at all, are very sure to come – soon. Tomorrow, our church starts our VBS program. It will be another avenue of change and transition for 5 days. So maybe this week will continue the progress we saw in IN and stave off the potential behavior problems. Time will tell. I hope to be writing a good report over the next few days and by the end of VBS.

My biggest hope – that the smiles don’t stop. Please Lord, let my son keep smiling!

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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 secrets 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.

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Even though I think spring has officially begun, it still looks quite wintery outside with dead trees empty of their leaves, and grass that only has patches of green here and there. It’s a cloudy day, so there is no bright sun breaking through the bleak landscape. It’s kind of a sad sight, depressing even.

But there! Look! Our friend has returned – a beautiful bluejay bird who flits about and perches on a brittle limb of one of the small trees in the yard in the middle of the driveway. In my line of view, it is just to the left in my bay window. I think to myself he must be lonely because I never see him with any other feathered friends. Yet here he is, seemingly joyful to have the tree all to himself. It is a welcome sight to see such beauty in the midst of ugly. Let’s be honest – who has framed pictures of dead nature proudly adorning their walls? No, we like to hang the pretty of nature – the colorful array of a mountain range at the height of the fall season, or bright sunny days in summer. Not many would opt for the dreary, cold, grey scene of winter – at least not without some pretty snowfall glistening in the cold day’s sun.

For quite some time now, I have been considering the word “hope”. The word intrigues me. The Biblical use of hope seems to be quite different from our modern usage. It is used in so many encouraging phrases, even the title of this blog, “Post Tenebras Lux: Hope in Autism”. We think of the word as something that we very much want to happen, but have no certainties about whether or not what we hope for comes true. When I end an e-mail to someone I want to hear back from, I say, “I hope to hear from you soon” or “I hope to see you again soon”. This hope implies that it may or may not happen. I would like for it to, but I have no guarantees I will hear from or see them soon.

This is not the Biblical use of this precious word. I intend to put much more thought and study into it, but my immediate thoughts are that the word in the Bible can mostly be used to mean “wait”. We “hope” in the return of Jesus – that is, we eagerly wait for it. It IS a certainty, a guarantee, and that is why we have “hope”. The Bible seems much more clear that whatever hope we have is actually a guarantee, not a potentially unfulfilled promise that we desire strongly.

And so I consider the bluejay once more. This small, seemingly insignificant creature grants me something of which I am in need daily: hope. His presence is the promise of spring that is coming. The trees will not always be so bare, and the grass will not always look so withered, nor the contrast of his bright blue feathers so stark against the greys and browns behind him. The leaves will return, the flowers will blossom, the grass will grow greener, and in time, more feathered friends will fill the branches. We are promised seasons in Scripture. Seasons in nature, seasons of life. Even though the sky is grey, and the trees seem lifeless, there really is life taking place beyond what we can see. There is sun beyond the clouds. There is life within the trees getting ready to break forth. There is hope. Not the kind of hope that is desired but unsure. The kind that is a certain promise of the coming newness spring will bring.

Living life in the midst of what sometimes feels like a never-ending winter, we are promised “spring”, the newness of life. The deadness of this life will be done away with, and our world will be recreated with the stamp of a Hope that never dies. It is not yet here, but it is coming. In fact, there are many recreations along the way that remind us of this very hope. Funny that a simple bluejay can bring about such thoughts. How thankful I am for his spray of color this morning. I hope to see him again tomorrow morning.

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People have told me, I think in an effort to help, that they can’t imagine parenting a child with autism, and they feel they have no place to encourage me because they have no clue what I’m going through. I understand they’re trying to minimize themselves to boost me, but that’s not what I want. I don’t think I’m better than anyone else because I have a son with autism and therefore have harder trials than people with neurotypical kids. I’m not better because I have more reason to be sad, or depressed or bitter and resentful. I’m different. I’m not worse-off than you because my family gets to claim “special needs”. I’m different. I’m also not the same as you. I’m unique in my personality, my background, my family life, my hopes and dreams, my desires, what makes me tick and what ticks me off. We’re different in all these respects, and there’s nothing wrong with that.

But we do share something in common. We’re all sinners, living in a fallen world because of sin, in need of hope for redemption and the ultimate rescuing from this world of darkness and decay and disease and danger and disaster. And because we all share in this world as human beings, we also share in the hope of the next world and the joy it will bring – if we share Christ as Lord as believers.

We Christians have some whacked-out, backwards, upside-down beliefs. We echo the words of Paul, “to live is Christ and to die is gain.” (Philippians 1:21) We claim the words of Jesus as our own, “you must lose your life to find it”. (Matthew 16:23) There’s more. Die to sin and live in the Spirit. (Romans 6:11) The first shall be last and the last shall be first. (Matthew 20:16) The humble are exalted and the exalted are humbled (Matt 23:12). When we are weak, then we are strong. (II Corinthians 12:10) The poor are rich (Matt 5). The rich are made poor. (II Corinthians 8:9) The wise of the world are made foolish; the foolish things of God are shown to be wise. (I Corinthians 1:25) If you love something, set it free. Okay, I’m kidding on that last one (that’s NOT in the Bible!). Just keeping you on your toes.

But we have excellent reason – the most excellent reason – to believe all these crazy ideas. Because it’s actually all true. We believe the Bible is the holy, inerrant (no mistakes or contradictions against itself), written Word of God, and because He is truth, His Word is truth. He sent His Son, Jesus, who is “the Way, the TRUTH and the Life” (John 14:6) to become a flesh-dwelling man so he could sympathize with our weaknesses (Hebrews 4:15)… so He could be our perfect intercessor in the throne-room of God. He is able to be our perfect intercessor because He is the perfect, sinless Son of God who died on the cross (killing OUR sin then and there), and was raised to life three days later (by the power of the Holy Spirit who now indwells those who believe). He was the firstborn of Creation, (Colossians 1:15) yet He became the last – the last prophet, the last High Priest, the last King, the only Savior of the world. And because He humbled Himself, God exalted Him (last shall be first) and gave Him the name above all names (Phil. 2:9).

“So what?” you may ask yourself. “Big deal.” It IS a big deal. A VERY BIG DEAL. Because this means good news for us. This is the Gospel. That Jesus is King and He reigns over all. The sub-story of His Kingship and Lordship is the benefit we derive in salvation because of the work that the King has completed in our stead. It is through that work that we have joy in this life because of the ultimate joy that is coming in the next. It is through the suffering of Jesus on the cross, an instrument of torture and death, and the pouring out of His perfect blood that we no longer live in grief over the consequences of our sin (not completely – we still suffer consequences of sin, but not the full consequence of sin and eternal separation from God) because we have forgiveness. We can live in freedom from a guilty conscience because the penalty of sin has been paid, and we are the beneficiaries. We live in the glorious hope of the return of our King to fully reconcile His people and restore His whole creation back to its full rights and proper order. (II Peter 3:10 – 13)

It is for these reasons we have hope today – because of the hope we have of the future that is not yet come. I can have hope today – in the midst of my autistic son’s crying and screaming and scripting and stimming that he will one day be fully restored as a son of God. He will not have autism forever.  I will not cry in the night forever because one day all tears will be wiped away by my King. We will not suffer the dirty, ignorant looks from people in public, or the drudgery of IEP meetings, or the guilt that I’m not doing everything I possibly can for my child, or the on-going grief we experience every time another milestone expectation is not reached, or is reached in a different way than “normal”. We will not live here forever. For now, the enemy wars against us (Ephesians 6:12), but in the end, he will be destroyed. But since he is not yet destroyed, this is still where we physically live: in this world of darkness and decay and disease and danger and disaster. Yet, we live spiritually in the shadow of a glorious hope of the Light that IS COMING.

This knowledge makes my life a bed of roses – complete with thorns. Knowing this doesn’t fix it all, or redeem these trials. But it is growing me – sanctifying me, making me mature in Christ; and even though it sounds trite, it is being worked out for my good – and most importantly, for the glory of God. Because honestly, it’s not about me or my husband and our feelings about autism, and the incredible disruptions it causes in the life of our family. It’s not about Samuel and coping with or curing autism. It’s not about suffering well to teach others in our community or our church, or being an encouragement to our pastor because we actually listened to the sermon and are trying to live it out. It’s not about you and your sympathy for us and others, or your own sorrow and grief over your own trials – hard and tragic though they may be. It’s about God. It’s about His story. It’s about how He is using us to play important parts in His story of redemption. It’s about His Son Jesus who is King and will visibly reign over all – utterly and completely reigning alone in His own right.

If you really want to encourage a weary, struggling sojourner, encourage them with these short, simply sweet words from Revelation 22:20 from the very mouth of Jesus, “‘Yes, I am coming quickly.’ Amen. Come, Lord Jesus.”

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