FLK

Elise has a doctor that I love. He is well educated and experienced with children with her kinds of problems, and he’s been in the game for over 45 years. He shoots from the hip and tells me how it is without losing his bedside manner. Years ago, the first time we visited this doctor, something happened that will forever stay with me. While speaking about Elise and her future of impending problems, he came out with, “She’s what we call an FLK.” Now, I had never heard these letters put together before to describe Elise, so I naturally asked the doctor what they meant. His reply shocked the daylights out of me.

“Funny Looking Kid.”

All I could think was--- Did that just happen? Did he just say that? Now, if you know me at all, then you are aware of the fact that I am very hard to offend. I have written a post on that very subject. And, to be completely honest, I wasn’t offended. I was curious. Was he letting me in on backroom slang used by doctors, nurses, teachers, and therapists about kiddos with brain injuries?

At first I thought that surely this FLK thing was restricted to the older generation of doctors with antiquated views on kids with special needs. Nope. I have since questioned several of Elise’s other doctors on this issue, and they have all sheepishly responded with the fact that, yes, this term is widely used in the medical community to describe children like her. I was told by one of her therapists that this expression was originally used to describe kids who didn’t have a distinct diagnosis. They were just odd looking, and it was obvious something was wrong with them, whether it be a syndrome or some form of brain trauma. Over the years, it has become a sort of code word for-- “Look at that kid, something is off!”

I looked down at my little girl, laying on the examining table in her prettiest dress. She was wearing new earrings and matching shoes. Her hair was brushed out so that her curls hung loosely, tied up with a matching bow. To me, she was absolutely beautiful, but at that moment I realized that no amount of bows, jewelry, and pretty clothes could cover up the fact that Elise didn't look normal. In fact, underneath all of those adornments, she can very well be funny looking.

I’ve had to face the fact that, as she grows older, the more “special needs” she looks. The effects of certain medications have relaxed her muscles to the point that she has a hard time keeping her mouth closed when she is sitting upright. No matter how much behavioral modification medication we give her, it will never completely take away her urges to hit herself in the head, grind her teeth, bite her hands until they bleed, and make crazy looking moves with her arms in the air (think New Kids On the Block - Oh-Oh-Oh-Oh-Oh- Hangin' Tough!)

Each year that she grows, she is farther away from the chubby little girl with the sunsuit on looking like a little doll. Baby teeth give way to “big kid” teeth spaced further apart. Her eyes are never facing the same direction, and they jump around in her head at times. She has microcephaly (small head due to small brain), which means her head stays the size of a 9 month old as her body shoots up to a normal size (thank goodness for long hair!) Most people don't realize that for every cute picture you see of Elise, there are at least 30 that I would never show a soul. Half of the pictures that I take of her capture her slamming the heel of her hand into her jaw. If I'm lucky, I can catch a smile, but she has recently taken a liking to smiling with only half of her mouth. Not a good look!

This progression does bother me, but there is absolutely nothing I can do about it.

I think in the past, I must have used her cuteness as something to hide behind. It made me feel better about her condition. As she moves on to new stages of growth with long lanky legs, and the loss of her baby looks, I think I will be forced to hang on to something new besides her appearance. Don’t get me wrong. Every time I lay eyes on Elise, I am struck by her beauty, whether she is in a diaper laying in bed or whether she is all made up. I just want the rest of the world to see her that way as well. Since that isn’t possible, I will continue to distract people from her “oddities” by drawing their eyes to her sparkling jewelry and shoes.

I’m on top of this now. The next time I hear those three letters used to describe Elise, I will respond with:

"Why yes, she is an FLK-- a Fabulous Looking Kid! Thanks for noticing!"

Another Visit From the Pain Ghost!

There is something that comes around every few days, weeks, or months in our family. Sometimes it floats in like the wind, quietly. Other times, it rattles it’s chains and keeps the whole house on edge. This invisible phantom that creeps into our lives and so often scares us to death is known in our home as the “Pain Ghost”.

Like a ghost, Elise’s pain is invisible and scary. How can we help her if we don’t know where it hurts? We can’t see the pain. We can’t locate the pain. Elise can’t communicate the pain to us. It’s presence is just there, hovering. There have been times that her ears began to bleed before we were aware of an infection. She doesn’t have the ability to reach up and pull on them like small children will do, alerting their parents to the problem. Frequent urinary tract infections sneak up on us and are only discovered after testing at the pediatrician’s office. We also know that she has to experience cramps and muscle spasms throughout her body as a result of her cerebral palsy.

We exhaust the list of possible culprits by taking her blood, swabbing her throat, taking x-rays, and putting in a catheter to test her urine. Finding the source can be days or even weeks after the pain first appeared. Poor baby has to suffer as we try to unravel the mystery of what’s wrong. It can feel like we are all haunted by her pain that we can’t find fast enough.

Elise doesn’t just struggle with communicating her discomfort to us, it is downright impossible for her to let us know what is hurting, itching, burning, or aching. She can’t just walk into the room and announce, “My ear hurts!”, “It’s painful when I pee!”, or “My hip joint is killing me!” Elise’s impairments leave her without any way of signaling where she hurts or how much pain she is in. Over the years, we have become very attuned to her different communication cues and what they mean. There are still times, though, that her wails of pain and constant hitting and biting of herself don’t give us any information about the specific location of her suffering.

What we do know, though, is when this “Pain Ghost” has begun it’s haunting in our house. Her crying, whimpering, screaming and increased self-injurious behavior tell a story of unknown sickness that we have to uncover. It always starts as a mystery. A question of, “Is this just bad behavior (which she is already medicated for), or is it something bigger and more serious?” Times like these have resulted in scores of panicked visits to the pediatrician, gastroenterologist, neurologist, ENT, and orthopedic surgeon. So many times, it is just a matter of which test they run first as to how quickly we discover the source of her discomfort.

So, a couple of weeks ago, as you may know from the previous post, Elise was admitted to the hospital for treatment of Mastoiditis. We ended up going back to the surgery center last Friday for the doctor to put her under and clean out the infection once and for all (strong antibiotics were not working). I was so happy for him to do it, though, because it would mean a final end to Elise’s pain associated with this problem. Or so I thought. After being told that the infection was clear now and her pain should subside, I virtually glided out to the car with the knowledge that Elise would be comfortable now and the “Pain Ghost” had been scared away.

Well, beginning with the car ride home and not subsiding as of now, Elise is obviously still plagued by pain somewhere on her body. All I can do at this point is pick up the phone and play Dial-A-Doctor! This week we will see her orthopedic surgeon to check on her hips. Elise has hip subluxation (dislocation of the hips) at different degrees in each hip. This is due to her spasticity from cerebral palsy. We have always laughed about the way you can pick Elise up and she can appear as stiff as a 2X4 with her knees locked and her body straight and stiff. This is what we call “One Piece Elise”. Catchy, huh? She started this in infancy, and has continued over the years (although it is better now after having leg surgery a few years ago). It’s no joke, though. This repeated stiffness of her legs over time has caused her hips to come in and out of joint and, in turn, lead to some pain.

Let’s hope that this doctor’s visit proves worthwhile, and that we leave with an idea of where her discomfort is originating. Or at least be able to check that area off of the list of possibilities. Then on to the next specialist. It’s all a game. And I hate that for her. It just isn’t right. There are no good answers --- believe me, we have searched for them! But, it’s what we’re faced with, so we will do our best for her. That is all we can do.

Know this, though... I will keep shooing off that pesky “Pain Ghost”, even when it scares me!

(The ghost pictured at the top of this post is my son a few Halloweens ago. Talk about an easy costume!)

Just a Glimpse...

I have dreamed a handful of times that Elise is different. Different in a good way. Once, I dreamed that she was sitting in a high chair in some unknown house. Right before waking up, she looked me in the eyes and said, “Mama”. Another time, I dreamed that she took a few precarious steps, and we were so proud of her. In every one of these dreams, it feels like reality. I’m not thinking to myself, “Wow, Elise is doing crazy things we never thought she would do!” It just feels right.

Each time I have experienced these alternate realities thought up by my subconscious, I wake up with that feeling of-- “did that really happen?” We have all had to question ourselves after arousing from a deep sleep as to whether or not what we dreamed about actually happened. It usually only takes me a few seconds to realize that, no, it didn’t. The disappointment can be overwhelming. I have a survival skill that many moms of special needs kids develop. Don’t dwell. If I do, it hurts. So I don’t and it works. I move on.

I love to lay next to Elise in her bed. She will put her fingers up to my face and feel my nose, mouth, and eyes. She sees me with her hands. We will just lay there together, face to face. She likes it when I hum or sing to her as she places her hand on my jaw, feeling the vibrations of my voice. I treasure these moments.

About a year ago, I started doing something that is out of character for me. I found myself begging God to give me just a glimpse of Elise as a little girl that recognizes her mom. To give me a short moment where she sees me. Where she knows me. Where she looks at me and there is a deeper recognition of us as mother and daughter. Just a moment.

I pray “God, please. Just a glimpse. Please.”

It never happens. She just continues to lay there, looking off into empty space, using her hand to explore my face. When I don’t receive what I so desperately beg for from God, it surprises me that I don’t feel disappointed. I guess I know that what I’m asking for is just a fantasy.

Sometimes disappointment and the pain that tags along can build our trust and confidence in Jesus. My faith isn’t challenged by whether or not I see a miracle performed on Elise. I recently started a kid’s bible study with my older son, Lane. The entire first chapter focuses on James 1:2-4. It says,

“Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect (mature) and complete, lacking in nothing.”

Like it or not, I have come to realize that we are to use our grief and our overall situation with Elise as an incentive to grow. It helps to keep repeating to myself, “God knows what is best and you would be smart to trust Him!”

The next time I feel compelled to plead with God for a moment between Elise and me that I know can’t happen, I pray that I can instead look forward to my dreams. It’s in those dreams, real or not, that I get a peek. Just a glimpse of my baby girl. I get to hear her voice, see her take steps, and feel her as she puts her arms around me. I know that I’ll have to wait until we see each other in heaven to truly meet her face to face, laugh with her and see that understanding in her eyes that she knows me. For now though, I am learning to be thankful for my dreams.

A Small Detour

We just got home after several days and nights in the hospital. Elise has been showing signs of discomfort and pain over the last few weeks. We just finished a round of antibiotics for the latest of a million ear infections she has suffered from since birth. Apparently, the infection didn’t want to budge, because Elise’s behavior has escalated in the last week or so from mildly agitated to “GET ME TO A DOCTOR, MAMA!!!” Her school called Monday and Tuesday to report the difficulties she was having during the day. She wouldn’t let her daddy brush her hair after her bath this last week, and her normal hitting and bopping herself in the face and head had turned pretty violent. I decided on Tuesday to load up all of the kids after school and scoot on over to the pediatrician’s office for a quick check up. Lane was disappointed to leave his friends, so I assured him that we would be back in an hour in time for him to play a little more while I cooked dinner. That’s not exactly what happened! (Sorry Lane)

The doctor was not comfortable with the way Elise was acting or how she looked physically, so after 2 hours and several in-office tests, she decided to send us to Children’s Hospital. Thank goodness Daddy swung by and plucked up the boys to take them home. So, Elise and I headed off to Children’s. Nine hours and 1 CAT scan later, she was admitted for Mastoiditis, an infection in her mastoid bone behind the ear. It is close to the brain and can spread. She needs all of the brain she can get, so I was happy to see the nurses coming with each dose of IV antibiotics.

We got to her room a little after 3:30am, and I finally conked out on the pull out bed/cot at 4:30. Our stay was very pleasant and I decided to look at it as a “mini” vacation from my everyday life. I want to say a big “Thank You” to all of our family and friends who showed their concern with calls, posts of FB, texts, and personal visits to the hospital. This kid has been covered in prayers! Thank you, Jesus, for providing the medical attention necessary for my Sweet Elise.

This is Elise waiting for the bus. She is typically WIDE awake at this time of the morning. I had a feeling we would be visiting the doctor when she got home.

Such good boys being patient while Elise is being examined.

OK, that didn’t last long. Thankfully, Daddy came to the rescue!

IV in her hand. This one blew the next day so they put another one in her foot. Fun stuff!

Her bed at home vibrates and I know she wondered why this one didn’t! I guess if I were a really good mom, I could have shaken it back and forth with my hands. I love her, but I have to draw the line somewhere!

Daddy and Ty-Bo visiting. He loves his Sissy!

The next day in desperate need of a hair washing.

Home Sweet Home… Back where she belongs!

Feel Free to Stare... I Would.

Be completely humble and gentle; be patient, bearing with one another in love. - Ephesians 4:2

I don’t notice it much anymore as I enter a room with Elise and we are greeted with stares, whispers, and wives nudging their husbands to turn around and see what just walked into the room. After so many years of wheeling Elise around in a big honking wheelchair while she stares off into space or, even worse, hits herself in the head over and over, I am so used to the reactions that they don’t even phase me. Truth be told, they never did. I’m pretty hard to offend when it comes to the reactions of people when first confronted with Elise.

I know that there are many parents of special needs kids who are sensitive to the rubbernecking, gawking, and questions or comments that their kids receive out in public. I just don’t happen to be one of them. I try to remember the times that I have peered around a corner to get a look at someone who may be physically different than the average Joe. Anyone would be lying if they didn’t admit to times that their own mouth hung open when they witnessed a child with a major disability or sickness waiting in line with their parents at the grocery store. To avoid getting my panties in a wad over each gaze that lasts a little too long, I think about the person’s intentions. Are they trying to make fun of Elise? No. Do they want to make me uncomfortable? No. Are they deliberately trying to be rude and disrespectful? Of course not. So, what that leaves us with is plain old curiosity. Most people are simply curious to see a little child who cannot walk, doesn’t talk, and has a love for pacifiers at the age of 7. Instead of rolling my eyes and mumbling under my breath, I decided years ago to turn this situation on it’s head.

I think of it this way:

How awesome is it that God has given me an opportunity that not many have to interact with strangers and, hopefully, show Jesus’ love? God has given me something that typical families will never have. I can share our story, our faith in Him, our struggles, and our victory over such a tragic situation by just going out with Elise. I embrace this as something unique that sets us apart from every other “normal” family at Chick-fil-A. If I don’t have Elise with me while I’m out and about, I just blend in. Nobody cares about my story. Not one person would strike up a conversation with me. Elise is the catalyst. Sometimes it is just someone saying hello to her. Other times, people may specifically ask what happened to her. I welcome these comments and questions. More of us special needs moms should see these situations as an opportunity to show Christ rather than showing anger, disgust, or impatience.

So, instead of feeling like it’s the world against me, I just smile. You would be surprised at what a smile can do. It lightens the mood. It softens everyone’s heart. It opens up conversation. So many times, I have been at my son’s baseball practice, or in the middle of Target when I will get one of these inquisitive gazes. I am a pretty good judge at this point at knowing whether the person is just looking or wants to talk. A quick smile from me gives the onlooker a chance to realize that I am welcoming questions, comments, or just a compliment on her dress (I love those). There have been several instances in the past 7 years that a stranger has walked up to Elise and I and asked if they could pray over her. How cool is that? I can only thank God for these people who so swiftly come in and out of my life, never to be seen again.

The most beautiful thing I have experienced when it comes to public situations with Elise, is when someone brings their own child over to “meet” her. It is almost always a little girl - or several together. Boys aren’t interested. They walk by, keeping their gaze on her, and decide that there are more interesting things to move on to. Little girls, though, are always bewildered by her condition. Why is she sitting in that chair? Can she play? Why is she sucking on a pacifier? A little girl at church came straight up to Elise one day and boldly asked, “What happened to her? Is she OK?” I simply explained Elise in the best way I knew how to a child, and it satisfied her curiosity. She now smiles and waves to us in the sanctuary. Another little boy once asked his mother why Elise was sitting in a wheelchair. I would give a million dollars to see the look on his mother’s face again as she fuddled her way through a not very well thought out explanation. She told him, “Isn’t it neat? She doesn’t have to walk around all day like you. She gets to be pushed around in a chair!” I just knew as she walked off that she was kicking herself in the butt for that comment. The best thing to do in those situations, though, is to laugh. She didn’t mean anything by that answer. She just found herself caught up in the web of -- “What can I say that won’t be offensive?” As parents of special needs kids, sometimes in our eagerness to just feel normal, we expect the rest of society to not act human anymore. Don’t look, don’t comment, don’t question.

I realized from the beginning that WE are the ones who stand out. We are not a typical family. What they are seeing is not the norm. It won’t ever be. I just had to say, “Face it, Ashley, you are now the elephant in the room.” To me, it is much more uncomfortable when I walk into a room with Elise and everyone immediately looks the other way. It can be comical to see the different ways people can divert their eyes from Elise, trying not to offend. Then there are the times that seeing Elise has been very upsetting to certain younger children. One little girl couldn’t peel her eyes away from Elise as we ate lunch after church one Sunday at Souper Salad. She actually cried through the meal, stealing looks over at our table. Oh, how I wished her mother would have brought her over to meet Elise and see that she was ok. I hated that it was such a terrifying experience that will stick in that girl’s mind forever just because her mother was too uncomfortable to come introduce her to us.

So, don’t worry about it. Feel free to stare. Maybe next time, though, come ask me about her. I would love to talk!

Instead of being bitter, be pleasant

Instead of being offended, laugh.

Instead of showing anger, show restraint

Instead of showing irritation, show God’s love

(This post was not written regarding people who are rude and crass to our kids in public. I do not brush that off. I also know that some moms of special needs kids may not share my views. This is just a representation of how I feel in my specific situation. We are all different with how we feel and deal with our kiddos!)

Visually Stimulating a Blind Child

Some people may wonder why I am talking about vision stimulation with regards to a child who is blind. Well, Elise is cortically blind. Her eyes are perfectly formed with no physical impairment. It is the back part of her brain, the occipital lobes, that is completely damaged. As a matter of fact, I was told that she was blind in the first days after her birth, before it would be noticeable by just observing a newborn. All the doctors had to do was look at her MRI. Her eyes do their job. Her brain does not. What that means is that stimulating Elise’s vision, or lack thereof, could possibly lead to visual improvement. After years of keeping Elise in a visually stimulating environment, we are still unsure of what, if anything, she can see. We know for certain that she sees light. She will turn her head toward a light that is turned on in a dark room. It is with this knowledge that we have saturated her days and nights with as much moving and twinkling light as possible. Our motto is, “Who knows if she actually sees what we put in front of her, but let’s assume she does.” On the other hand, she definitely does not see objects, people’s faces, or movement of any other kind. It is funny sometimes when a person has a hard time wrapping their brain around the fact that Elise is deaf/blind. I can’t count the number of times someone has said to me, “Are you sure she doesn’t see anything? I’m positive she just looked straight at me.” I don't have the heart to tell them that they just happened to step into the space she was staring into before they came along!

(This post is mainly for those special needs families who are always looking at what others are doing for their blind kids. I love sharing ideas and getting creative by seeing what other families are doing. I will post pics of several things we have done over the years, but there isn’t enough time for me to cover everything! In addition to what I have posted, we also worked on pleoptics and hyperbaric chamber dives. When we quit, we had over 200 dives under our belts! The HBOT dives did seem to improve her vision somewhat, but it always regressed back to nothing. We don't do the vision boards and pictures anymore. We realized that Elise was not responding to them and not seeing them. But, all cortically blind kids are different. One may respond well, one may not. Elise's brain injury is just so profound that many things we tried in the beginning, we did not continue with due to the realization that her brain was just not able to respond. At this point, much of what we do at home revolves around just keeping her visually stimulated and happy.)

Chris showing Elise her black and white pictures. These sorts of pictures can be used to improve vision in cortically blind babies. My mom found them on the internet, and we printed them and laminated them. (I have them on my computer and can email them to you if you would like. Just email me.) We put them in front of her constantly because we did not yet know how badly impaired she was or what her abilities to improve were. In the beginning, she would actually catch one in her vision field and follow it across. After seizures started, though, it was completely lost and never regained. We do not still show these to her, but I believe it is very helpful to other kiddos with CVI who may have more visual potential than Elise.

Lane showing his baby sister the pics. The ear protection is because of a sound therapy we did with her in those early days. It could get loud and annoying! Once again, at this time we were unaware of the extent of Elise’s hearing impairment. After trying hearing aids and having various tests done, it was discovered that her cochlea was completely damaged. This meant that no matter how we amplified noises, she did not have the physical ability to ever hear them.

We always surrounded Elise with black, white, and red. Very visually stimulating. Even if you’re not sure if they see anything, what does it hurt to make sure that her surroundings are the best in color and patterns for vision?

Elise’s black and white checkered wall. Very visually stimulating. We would put her in her therapy seat and sit her in front of this wall with bright lights shining on it. I always felt frustrated that she didn’t seem to respond to all of the radical steps we took to provide her with vision help. I figured, gee, here we are willing to do anything, even paint our wall like a checker board, and she just wasn’t the best candidate for it.

Elise sitting in the Bumbo in front of “vision boards” that we made. We always propped these boards in front of her wherever she was. Even in bed. We tried keeping the boards simple, but we noticed that Elise responded best to things that were "busy". Like I said before, the way she looked at these boards was completely lost due to seizure activity that is yet to be completely controlled. We bought the boards at Hobby Lobby and put her black and whites on them. I also put borders from a teacher supply store around the edges in the middle. This is just one of many boards that we made. By the way, the head control that she has in this picture was lost after seizures started, and we are still working to get it back!

This is a video that is specifically known to work on children with CVI. It is called “Baby’s Smart Start”. We found it online somewhere years ago. There are several of them. When she was younger, she would sit and stare at the television. As she grew and her seizures worsened, she quit paying as much attention. We are wanting to start working with these videos again. Sometimes it just helps to take a break from certain activities and come back to them later.

We really stood out at the hospital during this stay! I couldn’t stand the thought of Elise laying in her bed for days on end with no real stimulation. So, this is what we did. I’m sure the nurses thought we had lost our minds. Especially since her chart said she is blind!

Same thing for airplane rides. I felt guilty if she didn’t have something visual in front of her. Black, white, red. Poor kid couldn’t catch a break!

This is a Vision Box that Chris made for Elise. Thank God for PVC pipe! I will post all of our PVC creations soon! We would just slide her in and leave her. She either saw it or she didn’t see it. I always felt better to just keep her surrounded with things to look at rather than having her stare off into space.

Her 1st light wall made to be used while in her standing frame. Since we know she sees light, I was always thrilled to put her in front of this to give her something different to do.

This is a “Light Box” that Chris made at our new house. In the beginning, it did not have a black cover over it. Elise has had the master bedroom in both of our houses. She has tons of equipment and several floor mats. She deserves the biggest room.

We decided to cover the “Light Box” with black material. This makes the lights seem even brighter and allows her to use it during the day.

At school, she works on a computer with a program that uses different lights. She totally understands “cause and effect”. It is kind of her thing! So, she pushes a switch (button), and it changes the color or effect that is on the screen. Her teacher made a make-shift cover to go over her and the computer to make it as dark as possible. If the lights are on in the room, it makes it hard for Elise to see the other lights that we want her to focus on. That is why she is under the black shroud. I will never get used to looking in her school folder and seeing that she “worked on the computer”!

Elise’s best vision accomplishment, in my opinion, is her ability to locate and follow (75% of the time) one of those light globes that rotates really fast and produces a cool light show. It also vibrates when turned on, so she likes to reach out and try to find it and touch it. This is VERY HARD WORK for her.

Elise really responds well to her light box at school. It is very bright and commands her attention. She definitely looks at it! If only I could put my face on it--then she could look right at me!