Answers to Make You More Aware

Where has April gone? As we wrap up Autism Awareness Month, I'd like to bring some more awareness to some topics that I'm continuously encountering on our journey.

"What is autism?"

Autism is a spectrum. It varies from child to child, adult to adult. It includes deficiencies/complications in social skills, verbal and nonverbal communication, and repetitive behaviors. It could also include medical and mental complications like seizure disorders, anxieties, gastrointestinal disorders, sensitivies, etc.

 As of May 2013, almost to the day of my son's birth, the APA changed the trajectory of the autism diagnosis in the Diagnostic and Statistical Manual of Mental Disorders, (DSM). No longer are there diagnoses of "classic autism," Asperger's, and PDD-NOS. You've probably heard those terms before; however, now, everything falls under the umbrella of Autism Spectrum Disorder.

Why the change, though?

• More accurate diagnosis
• Identification of symptoms that may warrant treatment or support services
• Assessment of severity level 

Many on Autism Avenue have mixed feelings about the newer change that lumps everyone together. In fact, it seems like there's a huge divide between severity levels, and not everyone believes these kiddos should be considered the same diagnostically. The good thing about the DSM is that it is an evolving book that develops just like science and the human mind. We could very well see another change in diagnoses in the near future.

"So what kind of autism does your son have?"

When I first began my journey with autism when Isaac was 2, I remember venting on a message board about my fears and suspicions that something wasn't right. I wanted to hear someone say, "Yep. It sounds like autism to me!" or "Nope, maybe it's..." However, some autism moms on the board ripped my questions to shreds and condemned me for all I had said. I've reached out to some moms since then who are more vocal about their children and some who aren't. However, I can read all the books and blogs, research all day long until I'm cross-eyed, and meet new autism mothers, but that still doesn't mean it's not a lonely place for us. All of our kids are different, and we can't expect the same things out of every single one of them. They all have different strengths and weaknesses, sensitivities and triggers. I truly believe finding the right program and right people are absolutely imperative. 

"So are you 'Light it up blue' or #Redinstead?"

You didn't have to look too far during Autism Awareness Month to see that there is a great argument going on in the autiverse.  On one side, we see people celebrating autism and the neurodiversity movement. These people use the #redinstead hashtag and become increasingly disgruntled if they hear anything about curing autism. Most of these folks celebrate their (or their child's) quirks and different abilities. They don't want to be "cured" because it's who they are. Some people, however, would love to see their babies thriving and cured from the "issues" autism has brought into the equation. Some of us really don't know where to stand. 

Most days, I celebrate my son and the fact that he could back up a zero-turn lawn mower into a barn at age 2.5. He knew every shape, color, number, and letter just after his second birthday. I love how he can memorize just about anything, and I love how quick he is to forgive. His big heart makes me feel like superwoman sometimes. But some days, I would really love for his obsessions to cease. I would like for him to lose his fears of certain things...the way he melts down when he is stressed and overstimulated...the way he struggles to have a conversation with people...even for just a month or so. But this argument is out there. For me, I have to lean on God and depend on his understanding and His plans for us; otherwise, I would never be able to make sense of all of this. I have to believe in my heart that every thing God has allowed us to walk through is for a greater purpose: to glorfiy God.

"I just don't see it. He doesn't look autistic."

I've been told this before, and seriously, I don't know how to take it. Sometimes it makes me feel good. The therapy is working. Maybe all the time at church has helped him be more comfortable in crowds and around loud music. Maybe all the love from family has helped him feel more comfortable in his skin. Maybe school is desensitizing him to all of his anxieties and giving him more confidence. But sometimes, it makes me uncomfortable. What if people think this is all a joke and that he's just a discipline problem? What if people think we are bad parents? What if people give up on him? What if people don't think he deserves his services? 

Looks can be deceiving. There aren't many disabilities out there where everyone has a different opinion on what caused it, whose fault it is, why it's here, and how we're going to "fix" it. It can be so overwhelming and exhausting at times. Some days are good and some days aren't so good. You might see us on one of those days and set your opinions on what you saw. These kids' abilities can't be based on first impressions, though. It's going to take time to get to know who they are and how they learn. I promise that it's worth it. 

"You shouldn't have vaccinated him."

This is a hot topic in the media even more than ever at this point. With all the latest measles outbreaks, it's hard to ignore the articles floating around on social media and the nightly news. If one asks autism parents about this topic, it's usually a pretty touchy subject. I've gone back and forth on it, wondering...just wondering what would've happened had I forgone his vaccinations. I battled with so much guilt for a long time over this because I needed something to blame. Over time, I've talked with those who saw a visible change in their child after vaccines. I've talked with some who said it was the amount at one time that set the child's immune system into overdrive, affecting him neurologically. I've talked with some who claim assortative mating and genes have everything to do with everything. I've talked with some who refuse to comment, those who believe God designed their children like that in the womb, and some who believe autism is nothing compared to death by a disease that should've been eradicated but has unabashedly emerged into our population once again. 

Sometimes, I feel that Isaac is that 1 in 59...almost in a sacrificial way, so to speak. I'd like to think of God and Isaac having a conversation before he came into our lives about Isaac being used in a unique way to bring glory to Him. I like to think of those things sometimes because it does away with the blame and postures my thoughts and fears on the one who keeps the Earth rotating in the universe. Are vaccines a government conspiracy? I don't know. We might not ever know exactly what causes autism, but I believe there is a reason behind it and a place in this world for our kids. 

"Have you tried...?"

Autism is out there for people to comment about all the time, and even though it makes me nervous and edgy, I know that for awareness to take place, people have to know our stories, the good and the bad, and they have to know that we are trying. I know sometimes that it looks like we might not be. Sometimes it looks like we're treading water and that we're going no where. I promise we are, though. Things just look different for us. Sometimes it's one step forward, two steps back. Sometimes it's two steps back and one giant leap forward. You never know what's going to happen developmentally with our kids; it has been this way since birth.

If you suggest something, and we don't try it, we don't mean any harm by it. Most of the time, making suggestions shows us that you care, and we're so thankful you do. We just want you to know, however, that most of us have once existed off the temporary hope from every new therapy, diet miracle, book that we read, and every suggestion only to find that they didn't work. We also can get pretty sensitive when it seems people are looking down on how we parent our special kids. We try so hard. We really do.

Please be patient with us and our kids. Every day is different. 

"What's your story?"

April of last year (when Isaac was almost 5) is when my son actually got diagnosed with ASD, but the journey started around 18 months of age. Isaac wasn't talking or mimicking like he should. It seemed like he was always reaching his milestones after his peers even though they were still technically considered within range. At 18 months, however, we discovered his first repetitive movement. He would walk by things and look at them out of the corner of his eyes. We had no idea what he was doing at first and thought it was so adorable. It never stopped, though. That's when I really started worrying. Things started adding up and making more sense. However, I was still as confused as ever. Definitely a paradox.

At two when the language still wasn't there, we signed him up with Early Intervention,and I'm so thankful we did. I can't stress enough the importance of getting help early on. There is no shame in this. So many parents get worked up over getting their children extra help, but would we shun getting a math tutor for a teenager struggling in math? Absolutely not. It's the same premise. Having that system in place during the long diagnosis season kept us focused on seeing small improvements even when we didn't know what was going on. This kept my heart and mind focused on hope, and these people became more than valuable to us; they became vital--part and parcel of our village.

It has been a roller coaster of therapies and evaluations since. After waiting months and months for an appointment, the first institution we went to told us Isaac didn't have autism and gave us some other diagnoses. They said he would need occupational therapy and physical therapy along with speech obviously...that he had a global developmental delay and a language disorder. I knew some of this sounded right and some of it didn't. I knew I needed more opinions to get all of this straight, and I'm glad I did.

It took two more years to figure out the truth, but by this time, my heart had settled into reality and I knew. At the beginning, though, I was a mess. That time in 2015 when I Googled "Toddler looking at things out of the corner of his eye" and every result came back with "Autism" in the headline, I lost control of myself for about two weeks. I didn't eat. I didn't sleep. I knew in my heart that at that point, we were forever on a different journey, even if it was just a Google search. Can you believe during this time was when we decided on having another child? I knew that letting the Enemy get to me wasn't going to help make this a reality. God knew, though. God knew the whole time. But I'll save more about Caroline for later.

Getting an appointment can take around a year at some organizations, but Mitchell's Place opened us up a spot that would only take a couple months, and the day Heath and I were set to talk with the psychologist (miraculously on April 2, 2018, Autism Awareness Day,) I knew what the result would be. I knew the timing wasn't a coincidence. In my planner, the month of April's theme was Count It All Joy, and the week of his evaluation's memory verse was James 1:2-4. Definitely not a conincidence.

God was definitely watching over us during that time, and he was there when he was born. He is with us today, and he will be with us tomorrow. 

Are you seeing God working through your situations? I would love to hear your stories.

Thank you, God, for your little signs. If we're not watching for them, we might not see them. Please help us always open our my eyes to notice you, Lord.

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Answers to Make You More Aware

The Music of Missed Milestones

Last night, after we read an Easter book that ended with Jesus sitting at the right hand of God, Caroline asked, "Where is God?" 

Wow. I didn't know what to say or where to begin. How do you break something down so huge and abstract to a little girl of two? But my heart beamed. She had asked me about God, and I was going to say something. 

"He's in heaven...in the sky." 

I probably could've come up with something better, but that's all I managed to say.

"Why?" she replied.

"Well, he's watching over us. He lives in your heart, too."

She didn't ask anything else, so I left it at that. 

But as I left her room, sadness filled my heart. Isaac has never really asked questions about God. One thing about being on the autism spectrum is the struggle to understand abstract concepts like faith. I've often battled with this, wondering if my son will be saved from sin, if he will understand and grasp needing a savior, wondering if God will understand if he doesn't. This is tough stuff.

One of the first things I remember about our journey was seeing a little girl praying around her table one night on Facebook. She was Isaac's age. She had her chubby hands clasped together and her head bowed. She whispered some words while the family cheered and clapped. They were two. My heart began to fill with sadness and jealousy. I kept wondering, "Why can't I ever get Isaac to imitate us? Why doesn't he even want to try? What am I doing wrong? How did I mess this up?"

Thankfully, he's just beginning to understand prayer. For a long time, he struggled with this. If we were praying at church and sometimes at home, it scared him. I don't think he could grasp why all of us were bowing our heads and getting quiet while one person seemingly talked to himself. 

Still, though, things are different for us, and even though it's hard to talk about it, I feel like it's my responsibility to communicate our struggles sometimes, to give our song a melody. 

Some of our songs have slow, steady rhythms that weave into our hearts and minds, staying with us forever. 

These are the bittersweet ones...beautiful because they remind us of where we've been and echo our homesick-for-heaven hearts. They give us hope. They give us promise. 

They crescendo and build with hope only to plummet back into the minor notes to remind us that this is not our home.

These are found in my family's songbook. Sometimes I have trouble turning the page and instead linger on the music of missed milestones. 

Often I find that my voice is rusty, I'm using the wrong songbook, reading the wrong lyrics. 

This can't be right. 

I feel the melodic joy building in one minute, and the next I'm plunging head first into the minor notes all brimming with rough edges and chaos. They sting. They hurt. 

Sometimes I watch my little boy at church and say, "God, what was in your mind when you created this little boy?

Before he was ever in our hearts, I prayed for him. I bargained with God. "Make him different, God," I said. "Make him special. Make him stand out. I promise to give him back to you." 

I imagined a preacher, singer, song writer, or artist. I visualized him possibly in front of the pulpit, singing, teaching, and passing on his legacy and testimony. I envisioned a little one singing in the choir and inviting his friends from school to church. I imagined sweet prayers with chubby hands smashed together.

But life isn't what we always have in mind.

Key change.

Instead, I watch him fidget, lie down, squirm, make noises, and exist uncomfortably in his own skin at times, and I wonder. 

Will this ever make a difference for him? Will he ever understand?

The enemy says that Isaac won't ever understand God or anything on that abstract of a level...that nothing that emotional will ever permeate his realm of thinking...that his sounds, squirms, and over-stimulated mind will always take precedence over the Word...that his literal mind will never grasp the wonder of salvation and community...that he will always be held prisoner by his own mind.

And with this, my voice falls flat. Sometimes I lose it all together.

This is when I'm reminded of Paul, the great martyr and teacher that he was. He often communicated with people and churches from a great distance. He poured out his life and love into his letters, and he depended on these epistles to share the message of God's sovereignty and to give his readers a hope of righteous identity in Christ. Alone in his cell, Paul had to truly believe in something he had absolutely no control over. He had to love those in which he could not communicate or monitor. He  had to love and forgive those he was angry with. He even had to forgive himself. I imagine he felt stuck at times, vulnerable, and powerless. I imagine he felt lost and confused, probably how Abraham felt when God led him to the mountain with Isaac in tow.

But, y'all, the song isn't over. It wasn't then; it isn't now.

"Fulfilled by love," that's what Paul teaches us about in Galatians regarding the old law and Jesus' sacrifice.  He says, "The only thing that counts is faith expressing itself through love." Gal. 5:6

When I walk into the sanctuary and see my church family keeping my little boy so my exhausted heart can hear the Word, I am fulfilled. When his grandparents take my little boy to spend the night at his favorite places, I feel fulfilled. When Isaac's teachers and paras send me messages of encouragement or pictures of him enjoying himself at school, I feel fulfilled. When friends tell me they saw Isaac or interacted with him, knowing it will warm my heart, I feel fulfilled. When my son learns something knew and wants to show me, I feel fulfilled. 

My stubborn heart that lingers on rules and formalities does not fulfill me. My plans don't. My expectations. My broken dreams. The developmental checklists. 

Love. What fulfillment.

God is our composer. He’s the Great Musician. He knows the lyrics to our song, because He penned every word. 

So what is God? A big question with a simple answer.

God is Love, and because of the example of his sacrifice, I too can relinquish any mental or emotional bondage I have over my life and my circumstances. I am free to love and forgive, and I am free to sing about it. 

This is why I sing; maybe you'll want to sing along, too.

"For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline. So do not be ashamed of the testimony about our Lord or of me his prisoner. Rather, join with me in suffering for the gospel, by the power of God. He has saved us and called us to a holy life—not because of anything we have done but because of his own purpose and grace." 2 Tim 1:7-9

I've Been Singing 'Bout my Lord for so many years 
I've Sung when I've been happy 
Even Sung When I've had Tears 
I've even had Folks ask me 
If It's All Been Just A Show 
But the Reason That I'm Singing 
I Want the World to Know 
Chorus 
I Sing Because There is an Empty Grave 
I Sing Because There is the Power to Save 
I Sing Because His Grace is Real to Me 
I Sing Because I Know I'm Not Alone 
I Sing Because Someday I'm Going Home 
Where I Shall Sing Through All Eternity 
Verse 2 
I've Sung to Those Walking Through the Fiery Trial 
I've Watched Their Saddened Faces Turn Into Happy Smiles 
I've Bowed my Head and Whispered 
Lord, Please do the Same For Me 
And I'm Glad That I Can Tell You 
He's Always Given Victory

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The Music of Missed Milestones

Guest Post with CeJe Thompson Hearn: A Decade of God's Grace

A decade, ten years, that is how long my family has been on the Autism journey. I like to believe that I am not old. However, in the Autism world, I am ancient. Zachary was first labeled “Autistic” at three years old. Shockingly, this diagnosis was actually somewhat okay with us. I had been called “nuts” by so many pediatricians there was almost some redemption in a label. I remember when he got the diagnosis, walking out of Children’s Hospital with my Mom. I put Zach in his car seat and then I walked to the front of our car and just looked over the edge of the parking deck. It was a beautiful day and I remember breathing deeply and holding my breath for a moment, letting it out, and looking at Mom and with full determination saying, “I wanted answers. We have answers. Now we know what to do.” Looking back, that breath and statement of assurance was probably one of the most hilarious moments of my life. I had no idea the path we were about to walk down, what my child would require from us and what would be required of him. However, even then I was aware that the diagnosis of Autism changed everything about how I saw my own child.

Autism is a more common diagnosis now. I do not say that to belittle the diagnosis. I say that to applaud all that has been done in the form of research. Just last year, the Alabama Legislature passed historic insurance reform led by the late Jim Patterson who Zach was privileged to meet during the discussion phase of that bill and before that during Leni’s Law. (Yes my 13 year old is cool enough to hang in Montgomery haha) Yet, at the time of Zach’s diagnosis, Autism was rare. We didn’t know about Autism and despite what I’d said, we had no clue “what to do”, we just knew we weren’t going down without a fight. We quickly discovered that all of the therapies we needed were going to require us to win the lottery or rob a bank. Zach needed speech therapy, physical therapy, occupational therapy, play therapy and he could also possibly benefit from music therapy and equine therapy. $$$. We were encouraged to get a DAN (Defeat Autism Now) Doctor, which was only located in Georgia, and didn’t take our insurance, so we did it. Zach went through another round of terrible testing that designed for him a special diet of foods only Hollywood millionaires could afford to maintain. Yet, we did it all. You see, we were before Autism was prevalent in schools and churches and even public. My family was on a hamster wheel willing to run as long as it took, and ready to spend every dime we had to “fix” our child. Writing that sentence and remembering all we put him through breaks my heart.

I wasted Zach’s childhood in many ways. For six years I spent so much time wanting society’s picture perfect child, that I missed God’s perfect picture. I wanted to hear, “I love you”. I wanted my child to read me his first book. I wanted to fuss about going to baseball practices and say “no” to a spend the night party. I wanted Zach to be invited to a party - he never has without his sister. I wanted to hold a real report card without an IEP evaluation. I wanted us all to sleep and eat and go places like normal families. So, I focused on these things and “fixing” them. I also prayed God would change Zach to be like other “normal” kids. I am again ashamed, but I’m being honest. I missed the beauty of my life with my son because of an inability to seek God’s will for his life instead of my own. Like I could know better than my child’s creator?!

Then one day we realized Autism was not our only issue. Zach also had a very life-threatening illness. That’s when I woke up. I was broken and thrown into a place where I was forced to recognize what was really important, Zach, just the human-being Zach. He was my God-given gift; just as he was; God didn’t want me to make him into something else. If God had needed someone different he would have made someone different. I was to treasure what I had been given, an absolutely gorgeous child. He didn’t say, “I love you,” but instead I learned that if I say it, and watch he will squint his little eyes and touch my face to tell me back. He will still cuddle in my lap at 13. We do therapies at school and in summer, but we have quit torturing this child with every new idea that comes along. Zach didn’t need to be fixed, we did. God knew that, and Zach was given to help us. When I finally realized this fact, I remember thinking so clearly, “I want to meet my child.” He was also sick and I didn’t want to lose him and never know him. So I became Mommy, not therapist. I watched “Cars” and “Milo and Otis” 10,000 times. I learned to flip flash cards, Zach’s favorite stem. Then, eventually, I would be brought cards, the same cards, daily. We had our first game. I had become a Mom and I had let my child become a boy instead of a medical project.

I am now thankful for Autism. We were told all of the bad things about Autism; no sleep, no social life, marital problems and money problems are guaranteed; yep they are all there... Nonetheless, nobody tells the good stuff. We have had a lot to laugh at. Our marriage has been made stronger. Our daughter has learned empathy and kindness that is extraordinary for a child her age. We have been humbled as we are forced to realize “perfection” isn’t always possible, “normal” is relative and sometimes you must ask for help. We have also seen that many people are very good. Lastly, and most importantly, we have learned God is faithful. Psalm 86:15 says, But you, O Lord, are a God merciful and gracious, slow to anger and abounding in steadfast love and faithfulness. He has seen us through every step of this crazy journey and given us the world’s most perfect tour guide to carry us along the way. We have truly experienced a decade of God’s grace in action.

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Guest Post with CeJe Thompson Hearn: A Decade of God's Grace

Guest Post with Tiffany Wyers Guin: One Day

One day. We all have that single day which sticks out to us as life changing. Perhaps the day you became a Christian, the day you got married, the day your kid(s) were born or the day someone special passed away. June 27, 2010, was that day for me. On this day, my life changed forever. It was a Sunday night before worship, and I was holding my 8-month-old daughter, waiting for my husband to get home. I was sure that Afton Kate just had a seizure. The truth is I had a feeling in my gut for about a week that something was not right. As I sat there holding her, I tried to talk myself out of thinking it was a seizure. I tried to think of anything that it could have been besides this.

When Justin walked through the door, I began to tell him what I thought had just happened. It did not take long into this conversation for her to have a second one. We called our good friend who is an ER doctor and asked what we needed to do. At this point the seizures were very short and a few hours in between so his advice was to watch her through the night and take her straight to our pediatrician first thing in the morning. She slept all night with no seizures, but the next morning she started a cycle that lasted several days. She would seize for about 2 minutes, sleep for a few hours, woke up and seized again. I lost count of how many grand mal seizures she had . Within the week she started on seizure medication, had multiple doctor visits, and the only information I got was that we would have to "wait and see."

Wait and see we did…. for six years. In this journey God led us to many different doctors and programs to help her catch up in her development. At 10 months old, we started her in the state Early Intervention program. There my classmate and friend, Jennifer Hendrix, began working with Afton and still works with her today. In addition to this program, we put her in a private Early Intervention preschool called the Bell Center in Birmingham, AL. This program did wonders for our daughter. Our family and church family were supportive in this decision. We made over 300 trips to Birmingham, raised almost $15,000 for the Bell Center, and even ran a marathon and half marathon. When she graduated from the Bell Center in 2013, she still had benchmarks to achieve, namely walking.  We started hippotherapy in Jasper, AL, with the EASI program. Within six months, she was walking. Prayers answered! This was the first major hurdle she overcame.

The early intervention program provided other benefits that helped Afton including occupational therapy, physical therapy, and speech pathology. We did anything the doctors recommended to find out what was going on with our daughter and how to help her develop. We went to ophthalmologists and had eye muscle surgery. We went to ear specialists, neurologists, and geneticists. Our neurologist Dr. Martina Bebin got her in the Sparks Clinic at UAB but this, like so many other things, gave us no answers. We were grasping at straws to try and get answers. The whole time it felt like I was drowning in grief.

During all of this time I did everything I was supposed to do. I smiled and was outwardly positive. I was supportive of my daughter, but on the inside I was a disaster. I went into full mourning. I felt guilty about mourning my living, breathing child, so I tried to hide it, but that only made things worse.  Every time someone would offer words of encouragement, I would smile and say thank you, but inside I would just scream. I heard a myriad of encouraging words that were not actually so encouraging. Some of which included "God only gives special kids to special people..." or "God made her special for a reason..." and my personal favorite " Modern medicine is amazing, I’m sure they will be able to fix her."  OHHHH! I just wanted to scream at the top of my lungs, "She is not broken and my God did not do this to her!"

As heartfelt as it was, it only made me feel worse. I would try to tell myself that I should be content and count it all joy, but I was angry. I was angry at God. I was angry at myself. I was even at one point angry at Afton Kate. I couldn’t pray or worship. I needed help and was pushing away the only One who could help me. I continued on this way until the birth of my second child. Afton Kate was a little less than 18 months old when Blake was born. I am sure everyone thought we were crazy for having a second child so close in age given our current situation. (A few well meaning people did express this to us as if it was any of their business) Honestly, so did we at first. He was a God send. At Blake’s six week appointment our pediatrician said, "Blake will be better for Afton than any therapy you might put her in." He was right! Our son is the most patient, caring little boy. I could tell you a list of things a mile long he does for Afton. He and Afton have a special bond. Even though she is non-verbal, they can communicate together on a level no one else can. He accepts Afton for who she is. He is her best friend. In addition, he helped Justin and I take our mind off all the unknowns we were facing. He helped me to know that I was not a failure as a mother. He was developmentally ahead so as time progressed, Afton became competitive and started trying to keep up with him. Slowly I began to move into acceptance.

After 6 long years of waiting and testing we were able to find out that Afton Kate’s condition was genetic and that the genetic abnormality was new to her. Justin and I did not carry it nor could it be passed on. At 8 years old she was put on the Autism spectrum. On that fateful day back in 2010 all I wanted was answers. I kept thinking if we could only get a diagnosis, we could help her so much more. We started therapies as a placeholder, so to speak. We would do this or that to keep the momentum going until we found out what we were dealing with. Then, we could start a real program. Turns out those "place holders", were the real program. In those 6 years Afton learned to walk, started communicating, and now that we have a diagnosis, we are just doing more of the same. We take one day at a time, celebrate the small stuff, and try not to sweat the big stuff.

 Nine years later I like to think that I have finally reached full acceptance. I finally have been able to appreciate the journey that I have come through and look forward to the rest of my journey. Sure, there are things that I will not experience with my daughter and when what should be a milestone passes it hurts. I try not to dwell on it. I shed a few tears of self pity and roll on. Afton doesn’t know she missed something. She is just as happy and life goes on just like before. I have a happy healthy and beautiful young lady that unconditionally loves mommy, daddy, and her two brothers. Her smile is contagious, and her laughter brightens the gloomiest of days. She loves to sing, be silly, and is always by my side.  I will never lack for companionship as long as she lives, and when the our journey comes to a close we’ll be singing together again with the angels in Heaven. There will be no more therapies, missed milestones, and discouraging days. We will live in the direct, perfect presence of our Father who will meet our needs in perfection (Rev. 21:3-4).  

I said that June 27, 2010, changed my life forever, but what I should have said is that it changed what I thought my life should be. Truth is, no one’s life turns out like they think it should. We all have things happen that we don’t expect. We all have that one day, but if we dwell on what might have been, we’ll never enjoy what is happening now right before us.

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Guest Post with Tiffany Wyers Guin: One Day

Guest Post with Jessica Ellis Blackwood: The Beauty of Autism

One fall night, I stood just outside a car, holding my then 4-year-old son. As we gazed up at the crystal clear sky, a million stars twinkled, and my son’s eyes shone brighter than them all. He was in absolute wonder, and I was in tears. You see, that look said more than a million words ever could. The awe struck wonder on his face gave me so much joy and hope! Just one year prior, we had been hit with the news that he was nonverbal and autistic. As devastating as a diagnosis like that can be, we were determined to help him be who he was meant to be. Each and every day following the diagnosis was really no different than the days before, but we finally knew what made our boy so unique.

Autism looks different for each individual. For my son, it means difficulty communicating with language, an inability to sleep, and difficulty with foods. It also means lots of hugs and cuddles, musical laughter, and the sweetest, angelic voice when he does speak. So often, we get caught up in the negative and don’t stop to see the positive. When you have a child with autism, though, it’s so important to see those positives. Do we wonder and sometimes worry about what his future will look like? Absolutely! However, we also know that he is full of potential that is just waiting to be unlocked. In fact, I’ve learned so much by just watching him process and absorb the activities of the world around him. His mind is truly amazing!

The main thing that I’ve learned, though, is how important it is to actually take the time to notice him. For example, my son has trouble communicating with language, yet he can recite an entire cartoon or song he hears after watching or hearing it a couple of times. He’s begun to even use these songs and phrases to communicate what he wants or even how he feels at times. The thing is, I wouldn’t be able to pick up on any of that unless I actually stopped and paid attention. That’s one of the awesome things he has taught me...it is important to pay attention to those I love. When I say that, I don’t mean just giving someone 5 minutes of your time. I mean really digesting their actions, words, & body language. By doing that, you begin to see the beauty of the individual. You see their uniqueness and their true value. The beauty of autism is that each child is as unique as a snowflake. They all have their own gifts, but we have to give them the ability to share those gifts. 

So, in light of all of this you may ask, why would I wait to tell anyone about his diagnosis? Is it because I’m embarrassed? Is it because I’m ashamed? Is it because I’m in denial? I can honestly say that none of these are true. So, then why did I wait?

There was a period, before he was diagnosed, that I just couldn’t see it. He didn’t fit the mold that I believed that children with autism had to fit. He was loving and loved to be cuddled. He was happy and not at all aggressive. He didn’t have melt downs often enough for it to be a concern. However, he did walk on his toes on occasion and we struggled with sleep (as in he didn’t!). He also did not say more than a handful of words and those words were not always used appropriately. In addition, he didn’t really play with his toys imaginatively. He would look at their design and fixate on aspects of them, but not play with them in the way they are meant to be played. As I mentioned before, no two children with autism are affected in the same way, thus the reason it is a spectrum disorder. Two children may have similar issues with sleep, for example, but one may be nonverbal and the other may be incredibly articulate. Herein lies the reason why I waited....expectations.

When you hear that someone has autism, what do you expect? Before my son, I knew that just having autism didn’t mean that person was dumb or incapable. In fact, I knew enough to know that so many with autism are incredibly intelligent and can be savants in certain areas, but I also did think that they may have challenging social interactions or behaviors that made them somewhat weird or unusual. When people have weird or unusual behaviors, those around them often do not know how to react and, thus, avoid interactions as much as possible. Avoiding interactions is the last thing people who have difficulty with interactions need! There’s a level of fear...not necessarily that the person might harm you, but just that you aren’t sure how to handle them or their behavior. We fear what we don’t know or understand, which is just human nature.  It was and still is at times this misunderstanding that leads me to keep quiet about our struggle with autism. I see, however, how much I need to talk about it in order to help those around me understand that autism isn’t so scary. In fact, 1 John 4:18 has encouraged me so much in my journey. It says...

“There is no fear in love; but perfect love casteth out fear.”

Now, I realize that I’m taking it a bit out of context, but if we could extend the perfect love that Jesus has for us to those around us, whether they have autism or not, parents wouldn’t be so afraid to share their journey. With education and understanding, those fears would be replaced with unconditional love and the support that they need. Believe me when I say that support and unconditional love can go a long way in helping those on this path!

During this month of awareness, my hope is that by sharing a little bit about our son, those who read this will see the value and beauty of children, as well as adults, with autism. They are truly beautiful people with a very unique perspective on our world. If we’d give them the opportunity, I believe they could contribute so much! Know that just because someone falls on the spectrum, that in no way limits them in potential to do great things in life. It may mean that it takes them longer to reach their potential, but they can and will get there. My hope is that as we all become more aware, they will have increasing opportunity to do so! We have all just got to be willing to give them the courtesy of learning and doing at their pace. In doing so, love can be poured out, fear can leave and those in the autism community can be allowed to blossom and thrive.

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Guest Post with Jessica Ellis Blackwood: The Beauty of Autism