Luke's Story

One of the most difficult things I have had to do as a parent was when I sat down with my frustrated, tearful 6 year old and explained to her why her brother is "different". She knows he's different. It's obvious when you are in a room with any other child his age. It's obvious when you take him outside and notice he would rather sit in the grass for an hour just to feel it run through his fingers than run around and kick a ball. It's obvious when you are at a birthday party and he's the only child not eating the cake, jumping on the trampoline, or interested in what presents are being opened. It's obvious when you are in a noisy room full of people and he starts blinking so hard that people can't help but to laugh nervously because they aren't sure if it's a tick or he's just being silly. It's obvious when you sit in on his toddler gymnastics class and watch the faces of all of the other parents as they try to figure out why he obsesses over the tiny warning label that is printed on the mat that covers the entire floor while their bright-eyed babies run, jump, swing, play and interact with each other. It's so very obvious.

I know what everyone wants to ask. I know what everyone is thinking because it's something all of us in this day in age fear when we decide to have children. "Is he.....autistic?" When someone finally does get up enough nerve to ask why he is the way he is, my answer is always different depending on how well I know the person, how much time I have to talk to them, and frankly, how much energy I have because I know it takes a lot of it to try to comfort that person by convincing him or her that he is okay. It's exhausting.

The whole thing is exhausting. We walk on eggshells because we never know when he will erupt. We feel judged when we are in public because he looks so normal, which makes us look like crummy parents. He likes everything to be a painfully specific way. His pancakes must be the frozen kind. And not just any frozen kind. They have to be the same brand of frozen kind or he knows. And when he discovers they aren't the specific brand of the frozen kind, he bangs his head so violently against the back of his highchair you are certain this time he will have the concussion you've been expecting every day since he was less than a year old.

We always tried to laugh off the things Luke did, calling him "quirky" and shrugging our shoulders like nothing was wrong, but we knew all along that something wasn't quite right. There were too many strange behaviors. He was like a ticking time bomb and we never knew when he would explode. Taking him out in public was always a big risk because the smallest things could cause a tantrum.

Luke was a laid back, happy, healthy baby from the beginning. He was a good nurser and made the transition to bottle easily. My only complaint with him was during the couple of times he would get up at night to eat, he had a lot of trouble going back to sleep. I quickly figured out he needed to be fed in a quiet, dimly lit room with no TV or extra stimulation and that seemed to help. This all seemed normal, but the older he got, the more difficulties he seemed to have.

He took to baby food very well and liked a variety of different kinds. However, from the very first introduction of more solid food, he would gag, vomit, and throw excruciating fits. He never would touch things like Cheerios or goldfish, screamed when you got anything near his mouth other than a familiar spoon or sippy cup, and never, ever put a toy or anything else in his mouth like most babies do. He ate baby food until he was two years old and then it became limited to four different things: soft bread, applesauce, yogurt, and pancakes.

He only drank milk. No water, no juice, no chocolate milk. White milk, that had to be organic or he would know. We tried refusing to give it to him until he got thirsty enough to drink something else, but he literally would not do it. He would dehydrate before he would drink something unfamiliar. He is now two and a half and still refuses to drink from a straw.

Getting him to let us brush his teeth was like...well, pulling teeth! You literally would have thought we were pulling his teeth out of his head the way he arched his back and wailed at the top of his lungs. If we had someone coming over to keep the kids, we were sure to brush his teeth before we left.

Luke didn't crawl until he was 12 months and didn't walk on his own until he was 16 months. He started trying to walk at 14 months, but every time he started to fall he didn't have the instinct most babies have to just plop down on his bottom. He would fall straight forward or back, bashing his head on the ground. He lived with knots and bruises all over his head, but he wanted to walk so badly. We walked him around by his hands or followed closely behind him for months. I wore a lot of knees out of my pants and had a lot of back pain during that season of our lives.


He held his arms up in a bent position with all of his fingers on each hand crossed in a strange way. He would scream if his hands or clothes were soiled in any way and it was very difficult to calm him down if they were not cleaned immediately.

Since he was tiny, he was obsessed with ceiling fans and anything that would spin. He would spin one wheel on a toy car for 45 minutes straight. If we left him in the church nursery and he started to cry, we would immediately say, "Find something that spins!" It seemed to soothe him more than just about anything. He could have been in a room full of new toys and he would find a piece of string on the carpet and pick it up and drop it repeatedly. He loved to open and close cabinet doors, noticed the fine print on things, and had an abnormally long attention span.

For the first half of last summer, he refused to wear sandals on his feet. I didn't want him to play in the water on our deck in his tennis shoes, but I didn't want him to get splinters either, so I put his sandals on with socks and he was okay with that. Then I gradually got him to let me put them on without socks, but not without a fight.

He didn't like change or transitions of any kind. Once he started doing something he enjoyed, it was impossible to move him to something else. Birthday parties were especially hard. They move so quickly and there's always something new and different to do. So while all the other kids are having fun, he would either be throwing a fit or contentedly tossing a piece of tissue paper in the air and watching it fall over and over and over.

He could be in a room full of children who were running and playing, with toys surrounding him, and he would walk around aimlessly, never making eye contact with anyone or playing with anything and he was perfectly content doing so. He only acknowledged his dad, sister, and me on a regular basis. He didn't even act like anyone else was even there. We had to call his name several times to get his attention, but we knew it wasn't an issue with his hearing. We used to joke (as a coping mechanism, I now understand) that he walked around like a little zombie. He would not socialize with other children, even though we tried to give him as much exposure to others as we could. He just lived in his own little world.

He couldn't jump, walk up or down steps, stand up without pushing off the ground with his hands, or many other basic gross motor skills that toddlers his age picked up quickly. He would sit on a trampoline or in a bounce house and let the other children jump all around him while he watched observantly. He never tried to climb on anything and never even attempted to climb out of his crib. He was very unsteady on his feet for a long time.


He had the ability to speak some words, but had such a hard time coming up with the right words at the right time to communicate his wants and needs. For example, one weekday morning, Donny was running late and I decided to get Luke out of bed and get him dressed to save him some time, even thought I am usually already at work when he wakes up. This was a bad idea, considering it deviated from Luke's usual morning routine of Dad waking him up, feeding him breakfast, and then changing his diaper and his clothes. I got him up and decided to change his diaper right away because he was soaked. He could not figure out why his routine had changed. He was lying on the ground crying so hard, with tears streaming down his face. He wanted to say, "Dad is supposed to wake me up and I always eat breakfast first!" But all he could say in his frustration was , "101.1 KLRC! 101.1 KLRC!" This is of course, the name of the radio station we listen to in the car. My heart was broken as he covered his eyes with his little hands and sobbed as if to say,  "I give up." I decided not to mess with the usual plan from then on if I could help it.

His fits were so violent and almost always included him trying to hurt himself. He would bang his head on things, throw himself onto the ground, and throw things. If he got upset over something small, his fits could last for up to 45 minutes. He just couldn't seem to calm himself down. I remember sitting on the floor in my bedroom with him, just trying to keep him from hurting himself, watching him scream in frustration and wondering what was wrong with him and if it would ever get any better.

Parents truly know their kids best and have a God given gut feeling about their kids that on-lookers simply don't have. Donny and I knew something wasn't right, but every person around us tried to help us explain it away and we so desperately wanted them all to be right. "He's just picky." "This is a phase." "Just wait until he's older and can reason." "You've just spoiled him." Okay, so no one came out and said that one, but I knew they were thinking it. I even thought it myself. I blamed myself for everything from not eating enough vegetables during pregnancy to buying baby food in the jars. But it didn't make sense. Luke was our second child. We had done everything "right" with Aly. She was perfectly healthy, smart, a good eater, and very well-behaved. We thought we had this whole parenting thing figured out. I kept telling myself it could be so much worse and it definitely could be. He was healthy and so many parents have so many more problems than we had. But I couldn't help but to fight back tears whenever we were around any other children his age. He just wasn't able to do the things they did. I was so sad for him as I watched his frustration and inability to keep up.

I didn't know what was wrong with Luke, so all I could do was pray for wisdom. I would ask God to just let me know what I could do to help him. Looking back, that was exactly what He did. He gave us wisdom in the form of people who finally saw in him the things we saw. People who didn't give us excuses or make us feel like it was our fault. People who understood and wanted to help us fix it and made us believe it could be fixed. You never want to hear your child is anything but perfectly perfect in every way, but sometimes it's a relief!

When Luke was a year and a half, our pediatrician told us he was "mildly developmentally delayed" but not to worry about it. Yeah, right. You use the words "developmentally delayed" and tell a mother not to worry about it? Not how to help, or steps to take, but just not to worry about it? I walked out of that office feeling so helpless and confused. I went home and Baby Boot Camp quickly ensued. I was determined he was going to stack blocks and pretend to talk on the phone and pat Aly's baby dolls like he was supposed to. My child was NOT going to be "developmentally delayed", not even "mildly"! He made some gains, but he still was not where he needed to be and the eating situation just got worse and worse.

At his two year appointment I reiterated my concern with his eating. The same pediatrician suggested sending us to a nutritionist. He was certain he had swallowing issues, no matter how many times I told him that wasn't the problem. Nonetheless, I didn't know what else to do, so I agreed. My husband took him to the appointment with the nutritionist several weeks later, who after a series of questions (no observations of Luke being presented with food whatsoever) came to the conclusion that this was all our fault. We had created this monster and now it was our responsibility to fix it. If he got hungry enough, he would eat. We (or more specifically, I) had spoiled him and he was using this to control us. I was beyond devastated. I believed her because she was supposed to be the expert. For the next several weeks, I followed all of her instructions on how to reverse the effects of my bad parenting to the letter. If he didn't want what I offered, he would starve. But that didn't work. He would wake up in the middle of the night screaming at the top of his lungs. I would get him out of bed and hear his little belly rumbling. He didn't understand and I couldn't let him suffer for the sake of tough love anymore. The fits were becoming unbearable. Something had to give.

The nutritionist, who I have now learned was completely uninformed in this area as so many "experts" are, was actually a blessing in disguise. At the bottom of her list of instructions, she suggested that we take Luke to a speech therapist and gave us  the name of one in town because she "heard she was good". I also asked our speech pathologist at my school for some names and this particular therapist was on her list as well. Her office was close to our house, so I thought I would give it a try.

We finally went to the speech therapist after several weeks of waiting for referrals. Within a one hour evaluation, this woman had completely changed our lives. She did an extensive observation in which she offered him various kinds of foods and watched his reaction. She observed him eating familiar foods and throwing his fits when she offered him unfamiliar foods or soiled his hands. She watched him play and interact with me, asked questions, and took pages and pages of notes. She reaffirmed everything that I knew in my heart to be true. It wasn't our fault, it was not normal, and it can be fixed.

She then sent us for an occupational therapist to evaluate what she observed as sensory integration issues. We had to wait several more weeks and during that time I did as much research on sensory integration as I possibly could. The more I read about Sensory Processing Disorder, the more I recognized that this was my Luke! It explained everything. All of the quirks, all of the behaviors, all of the fits. My eyes were opened and I had finally received the wisdom I had been praying for.

"SPD happens in the central nervous system, at the 'head' of which is the brain. When processing is disorderly, the brain cannot do its most important job of organizing sensory messages. The child cannot respond to sensory information to behave in a meaningful, consistent way. He may also have difficulty using sensory information to plan and carry out actions that he needs to do. Thus, he may not learn easily." - The Out of Sync Child: Recognizing and Coping with Sensory Processing Disorder
written by Carol Stock Kranowitz, M.A.

We went to our occupational therapy evaluation and everything was confirmed. It all made sense. We finally knew how to help him. We finally understood why certain things were so hard for him and why other odd things fascinated him. We understood why he held his hands tightly shut, why he picked things up and dropped them over and over, why he blinked so hard and fast when too much was going on. It all made sense and these wonderful, amazing people who had chosen this as their profession had given us hope. Hope that he wouldn't always be this way. By the grace of God, we had discovered this early enough and they were going to help him. We knew we had a long road of therapy ahead of us and it wasn't easy working it into the busy lives of two working parents, but Donny stepped up to the plate, made sacrifices, and faithfully gets him to speech and occupational therapy multiple times a week. 

In just a few short months of therapy, we have seen our little boy emerge. He is by no means "cured". He still has fits. He still has a very limited number of things he will eat and still has his quirks, but we are amazed at how far he has come. We have learned how to meet his sensory needs and have changed the way we take care of him. He is not just talking, but communicating. He has lost most of his fear and anxiety when it comes to food and is slowly trying new things. He plays, laughs, runs, jumps, throws, and catches. He loves to draw, is obsessed with shapes and basketball, loves dinosaurs and cars and trucks, and all the things little boys are supposed to love. He finally points to things, acknowledges other people, shows a preference for toys and activities, enjoys listening to stories in books, plays with his sister, slides down slides on the playground and then climbs back up and slides again. He's a little boy. A happy, little boy who loves the world around him more than he ever has before. It's like he's seeing it all for the first time and we have the privilege of getting to watch it all happen right in front of us.

"The inability to function smoothly is not because the child won't, but because he can't...Whether the child has severe, moderate, or mild dysfunction, he or she needs understanding and help. Ignoring problems will not make them disappear."

 - The Out of Sync Child: Recognizing and Coping with Sensory Processing Disorder 

 written by Carol Stock Kranowitz, M.A.

Having Luke in my life has changed me forever. I thought I had all the sympathy and understanding in the world for parents who have kids with special needs. I am an educator for crying out loud! I have had so many students with so many different issues in my class and prided myself on having the same expectations for all kids. I look back now and wonder if any of my former students who were labeled ADD or ADHD or simply thought of as "lazy" or "odd" could have had these tendencies that had been undiagnosed. Maybe I could have been more sensitive and understanding. I have looked at parents with kids who have obvious disabilities with pity and have looked at parents whose kids can't behave in a restaurant with disgust, not taking into consideration what invisible disabilities those children might be dealing with. We've all done it.

I feel like I have had blinders on when it comes to those kids and they have finally been removed. I look at every single child in my classroom and every child I see walking through the mall or playing in the park as a unique individual with unique, individual needs more than I ever have. Not every child has a diagnosis, but every child deserves to have someone try to understand him or her a little better. Every one of us are the way we are because of our genetic make up, as well as the environment we come from. A bully is a bully for a reason. A non-reader is a non-reader for a reason. I've spent this school year, more than any school year before, trying to figure out all of those reasons why my students are the way they are and what their individual needs are. I am changed because of my Luke.

I have not shared this with many people, but this is probably the appropriate time. After our first child, we had a miscarriage. It was a very painful time for me especially, as I struggled with the guilt and grief that most women do when it happens. I was praying during one of my lowest moments, struggling with the thought that I might not ever be able to have another child when I felt God speak so strongly to my heart that we would one day have a boy and that he would fill our lives with joy. I was so comforted in that moment and I believed it to be true. About 11 months later, Luke Russell was born. No matter how difficult things are for Luke, he's such a happy little guy and he makes us happy too. All three of us see the world a little differently than we did before and I am thankful for that.

The day we had to explain to Aly that her brother was a little different wasn't easy. We told her that's how God made him. We are all "different" and that's what makes us special. We just have to try our best to help him learn the things she was able to figure out easily on her own and try to be sensitive to how difficult certain things are for him. With tear-filled eyes she said what we have wondered for so long, "Is he going to be okay?" I am so thankful that I was able to tell her with confidence that he was in fact going to be more than okay. We love that he is the way he is and now that we were honest with her, she does too. She celebrates every little accomplishment with us. She tries her best to be patient with him and to teach him new things. My hope is that she will be a better, more tolerant person by watching her brother struggle and ultimately succeed in his life. I am hopeful that everyone who hears Luke's story will be too.

Bring joy to your servant, Lord, for I put my trust in you.

Psalm 86:4

To find out more about Sensory Processing Disorder, go to http://www.spdfoundation.net/