Raylan's Story (So Far)
I preached a message at our church (The Pentecostals of Bossier City) a few weeks ago in which I briefly discussed our oldest son, Raylan. This has led to a few posts on Facebook celebrating certain milestones, as well as several rapid developments that we believe to be directly associated with a prayer that we prayed Sunday, April 26. Our immediate family, friends, and POBC members generally know what’s happening, but many others have expressed an interest in knowing the story.
Since so many people have asked, I’ve decided to share a bit about the incredible blessing in our lives that is our firstborn son, Raylan Mason Dean. I’m doing this for several purposeses:
To eliminate potential misunderstandings.
To describe Raylan’s situation in full.
To establish my family’s perspective.
To establish Raylan’s future testimony.
A warning: this will not be brief. If you want the quick summary, just scroll to the bottom, where you will find a fairly concise synopsis.
Even before Shari and I were confirmed by a doctor to be pregnant with our first child, we had already begun praying for him/her. We prayed for all the typical things -- a healthy pregnancy, safe delivery, a happy and healthy future, etc.
However, I also prayed for one thing that some might misinterpret: I prayed for my child to be different. I don’t mean better, and I don’t mean weird; I simply mean that I wanted God to use my child in a special way, for a special purpose, and for God to design him or her with that purpose in mind.
We eventually discovered that we were having a boy (initially much to Shari’s chagrin), and decided to name him Raylan Mason, with Mason being the name of Shari’s maternal grandfather. The pregnancy was fantastic; Shari felt great, was almost never sick, exercised frequently, and ate properly. As the day approached, Shari realized that it was a very real possibility that not only would she be having a boy, but she might also give birth to that boy on Halloween. Her exact words: “I don’t want a devil baby!”
Sure enough, with an hour and a half left on All Hallowed’s Eve, the doctor performed an unplanned C-section to bring Raylan into the world. I’ve mentioned it before, but as I held him in my arms for the first time, just moments after the cold, unfamiliar air hit his skin, I had a newfound perspective on the love of God. I didn’t just love this frail, tiny, old-man-looking little boy. I really, really loved him. Every priority that I thought I had changed in a matter of seconds. I leaned over to Shari to show him to her, and her shivering lips (a side effect of the anesthesia) formed into a smile, and I knew she felt the same way.
Upon arriving home, Raylan’s initial problem began to surface: colic. I had heard people say many times, “Oh, so-and-so’s baby has colic. They’re about to lose their minds.” I would always nod, not really knowing what colic was, and certainly not realizing that it meant their home had become a post-apocalyptic wasteland of anguish and insomnia.
We never slept. Raylan continually cried as if he was being stabbed in the abdomen. He wailed and curled his legs into his chest. We read everything that we could and tried every remedy, both medicinal and homeopathic, but nothing seemed to help. Our baby boy barely slept and rarely seemed happy for months. The colic gradually faded, but gave way to a barrage of ailments over the next three years.
We have done our best to compile a list of some of the sicknesses that kept us in and out of the pediatrician’s office:
- Over 20 ear infections, resulting in...
- Two sets of plastic tubes (the second was colonized in bacteria, leading to…)
- A third, titanium set of tubes
- 8 cases of croup
- 2 instances of scarlett fever
- 13 staph infections in 16 months (at least one confirmed case of MRSA)
We were so consumed with caring for Raylan’s health complications that we hardly noticed until around 18 months that he wasn’t hitting some of the verbal milestones in his age bracket. At two-years-old, our doctor told us that he had spent the majority of his life with his world sounding as if he were underwater due to the severity of his ear infections. This would seem to account for the delay in speech, but not entirely.
Raylan has always been different. We noticed that he wasn’t speaking sentences or responding to people as early as we expected, but in other ways, he has shown himself to be incredibly advanced. We started becoming curious (i.e. scared), and I began reading everything I could find in regards to late-talking children.
The first question we asked was, “Does Raylan have autism or Asperger Syndrome?” Despite having been screened by child behaviorists and a professional team during an examination to be approved for behavioral and speech therapy, Raylan has not been officially confirmed to have any disorder. At the present time, we’ve been forced to analyze his behavior ourselves.
Raylan has demonstrated the following suspicious traits:
Verbal Delay: though we have heard Raylan say countless words (easily in excess of 2,000), he doesn’t often communicate in sentences. And though we ask him questions like, “What do you want to eat?”, he usually either points or drags us to the desired item. The entire process is usually a facade; the answer is almost always “Cheetos.” Though he’s gotten much better in the past few months, he’s still noticeably behind his peers.
Selective Mutism: Raylan interacts with his family and friends fairly well, but when strangers or people with whom he doesn’t regularly interact approach him, he is perfectly capable of pretending they don’t exist. Questions will be ignored, and physical touch or “getting in his face” will result in a dirty look and turn of the shoulder. I know I’m supposed to be embarrassed by this (or something like that), but I find it secretly hilarious. I’m sorry.
Social Delay: Raylan initially had no interest in his peers. He thought he was an adult. He showed little interest in social interaction with anyone who wasn’t a parent, cousin, grandparent, aunt, uncle, or friend whom he saw on a weekly basis. Almost everyone else in the world was to be shunned. Complete strangers in Target didn’t make the cut.
During the past year, Raylan has developed a much stronger interest in children his age. We give most of the credit to his speech and behavioral therapists and the Sunday School teachers at our church, as most of his progress began after they entered his life. We now have to watch Raylan like a hawk, as he’ll burst into a full sprint if he sees children 100 yards away, and will begin laughing and playing with them as we struggle to keep up and tell him he can’t just run away from us at a moment’s notice.
Hand Flapping: Here’s where things start getting confusing. Family and members of POBC may have seen Raylan flapping his hands in excitement. In the world of autism spectrum disorders, hand flapping is usually associated with stimming, or “self-stimulatory behavior.” In includes hand flapping, rocking, head banging, repeating noises or words, and several other repetitive behaviors. Stimming is believed to be a response to overstimulation in those with autism. It is supposed to relieve anxiety.
However, we have only observed Raylan flapping his hands out of happiness or excitement, and never during moments of stress or anxiety. He doesn’t enter a trance-like state, but is usually hopping around and grinning or laughing while flapping his hands. It’s unclear as to whether he is stimming, but it’s fairly clear that it’s not textbook stimming.
Sensitivity to Loud Sounds: If Raylan is in a crowd, he’s fine. However, if the entire crowd begins screaming wildly or if he stands in front of a loud speaker at church, Raylan will cover his ears and give us a “Please make this stop” look. We recently observed this at the Dallas World Aquarium — if a large crowd of schoolchildren passed by, screaming, Raylan would cover his ears until they passed.
These “warning signs” have often been so mild that we never really considered some of the possibilities. In fact, his therapists have been unable to form a solid opinion on whether or not the signs are solid enough to confirm a diagnosis. Even Raylan’s amazing strengths have been somewhat ambiguous. I’ll list a few of those now.
Incredible Memory: Though Raylan has been delayed in speaking full sentences, we have heard quote entire 60-minute cartoons, word-for-word. He sings dozens of songs (and always sings perfectly in tune). He has also demonstrated us that he remembers places and things that he hasn’t seen in over a year and a half. These are only a few examples, but he has repeatedly demonstrated this unique gift in a variety of ways.
Academically Precocious: Despite Raylan’s speech delay, he is academically advanced considering his age. He was counting to 20 and saying his ABCs by 18-24 months, and apparently became sufficiently bored with his ABC’s that he began reciting them backwards after turning two.
His memory and perception has been most pronounced in dealing with shapes and colors. After Raylan turned two, we pointed to the moon in the sky and said, “Look, Raylan, moon!” He shook his head and said, “Crescent!” Sure enough, the moon was in either its waxing or waning crescent phase. He recognizes shapes everywhere — rectangular couch cushions, conical construction markers, and so forth.
On another occasion around his second birthday, Raylan looked at a caution sign leading up to a construction zone, pointed through the window, and instead of pointing out something like, “Yellow,” he shouted, “Equilateral triangle!” He can distinguish between octagons, hexagons, rhombuses, and many other odd shapes in addition to the typical squares, circles, etc.
During his weekly visits with his therapists, Raylan has impressed them most often by his approach to puzzles. They told Shari that it’s usually as if he analyzes the puzzle and puts it together in his head before ever touching a piece, then rapidly assembling it. He has put together several puzzles which the therapists told us they had never seen a kindergartner complete. They have told us several times that he has the mind of an engineer.
I know what you’re thinking, because I’ve asked the question many times: wouldn’t these strengths also lend themselves towards an autism diagnosis?
While it’s true that those who fall somewhere on the autism spectrum often demonstrate savant-like behavior, Raylan fails to show many of the other characteristics associated with autism, including the following behaviors that do not indicate autism:
- Has no trouble with eye contact
- Doesn’t engage in repetitive behaviors
- Shows empathy to those around him
- No problems smiling or expressing joy as an infant
- Babbled consistently as an infant
- Reciprocated gestures by 12 months
- Doesn’t throw uncontrollable fits (at least not atypical toddler fits)
- Responds to his name and commands (and has for a long time)
Many times, it seems to us that the only indicator that points towards autism is Raylan’s limitations in complex verbal communication, but the truth remains: we’re not experts, and we don’t really have any answers.
In reading two books by Thomas Sowell, Late-Talking Children and The Einstein Syndrome: Bright Children Who Talk Late, I found more similarities in Raylan’s behavior to Einstein Syndrome than in autism. Einstein Syndrome can typically be seen in late-talking boys who sometimes do not speak in sentences until the age of four or five. They are usually gifted in fields such as mathematics, music, or analytical areas, and their social development lags behind that of other children. Their memories are far above average, and they love to figure out how to take things apart. Yes, they are also very good with puzzles. Their families often consist of engineers or musically-gifted individuals.
Out of the behavioral characteristics, Raylan has only failed to demonstrate one, which is precocious reading ability, but it may be too early to tell. Again, we’re not experts, and this might be wishful thinking.
These questions have stuck with us for about two years, and though we don’t currently have any solid answers, we want to make the following points clear:
Raylan has demonstrated a verbal communications delay.
Despite proving himself to be capable in most areas and consistently surprising us in areas such as memory, puzzles, and music, Raylan is not communicating at the level of a three-year-old, and actually speaks in very few sentences despite understanding and speaking in excess of 2,000 words (obviously an approximation — we don’t keep a list).
We don’t know what has caused Raylan’s verbal delay.
Raylan is receiving therapy and has been monitored by professionals, but there is no diagnosis to which anyone has attributed his delay. He might have Einstein Syndrome. He might have high-functioning autism. He might be delayed because of hearing troubles that lasted over a year due to severe ear infections. The truth is that we don’t yet know, and to be honest, it’s not incredibly important that we attach a label to him.
We have sought out assistance, and will continue to seek aid in tracking and accelerating Raylan’s progress. We’re not in denial. We’re involved parents who want our son to progress.
We are not embarrassed or afraid of Raylan’s verbal development.
Yes, Raylan should be speaking sentences more often. Yes, we see the looks of confusion on people’s faces when they try to hold a conversation with him and he strongly rejects their advances — we’ve even seen people get offended when he completely ignores them (again, it’s kind of hilarious).
However, we don’t just love our little boy, we’re actually incredibly, immeasurably proud of him. He’s hilarious. He’s incredibly smart. His interactions with us on a daily basis leave us laughing and amazed, and we can’t imagine him any other way.
In other words, don’t “Bless their hearts” or pity us. Our boy is awesome. We’re happy with him, and we don’t lie awake and cry about it at nights. There was a time when we were fearful, but that day has long since passed (more on that in the next section).
He also happens to be super cute.
God is already answering prayers and helping Raylan
I already mentioned the sermon I preached that discussed Raylan (you can find it on our podcast — just search for The Pentecostals of Bossier City on your podcast app. The message was entitled “Thou Mayest”).
Several weeks later, during an incredible move of God in an altar service while Pastor Todd Johnson was with us, I felt compelled to publicly pray for Raylan. I don’t use this phrase lightly, but I felt impressed by God to pray for Raylan in a public manner. We cannot be afraid to pray bold prayers and let God declare His own glory through working miracles in a demonstrable fashion, and it seemed like that’s where God was pushing me.
I anointed Raylan and prayed for him, and felt the presence of God move on us both. There was no light beaming down from Heaven or a dove floating over our heads, but I felt that God touched my son at that specific time.
Later that night, we were going through our typical routine with Raylan. I heated his “milky,” he counted down the seconds on the microwave from twenty, and then I told him to go give his mom “sugies,” where he lets her kiss him on the cheek. Each night, Shari tells him, “I love you,” but Raylan has never reciprocated. That Sunday night, just two hours removed from our prayer, Raylan turned around, looked at Shari in the eyes, smiled, and said, “I love you!”
This was the first time he had told his mom he loved her. She cried for half an hour.
During the course of the next week, Raylan began not only speaking more often, but constructing sentences. It’s been nearly two weeks, and he continues to show rapid progress. We’re not remotely close to the end of our journey, but we feel that it was a direct result of the power of prayer, and that God is going to help us every step of the way.
That’s why we’re not afraid — we know God is with us. Raylan isn’t typical, and we’re absolutely okay with that. However, we do believe that God will progress his speech, he will lead a “normal” life, and the unique abilities that God spoke into him while he was in the womb will lead him down his own, divinely-ordained path.
When Raylan was a few months old, Bro. Lee Stoneking looked at him and without hesitation said, “That boy is going to be a prophet.” It wasn’t a passing statement — it was a declaration. One of the most powerful men of God that I have ever known, who was raised from the dead, having not breathed for 45 minutes, looked at this boy in the early days of his life and prophesied over him. For anyone that knows their Bible, they know that the prophets of God always walked, spoke, and carried themselves in a peculiar manner. We wanted a “unique” son, and we now believe this is all part of God’s plan.
So once again, please do not read this post and say, “Bless their poor little hearts.” The journey we’re on isn’t filled with fear, anxiety, or doubt — it’s all made enjoyable because of one incredible, smart, blonde-headed, dimple-cheeked little boy who brings light into our lives every single day.
We wouldn’t trade him for the world.