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Wednesday, August 13, 2014

AstroTurf



My husband, Chris, has created a backyard oasis for our family.  Not so much with lots of money and state-of-the-art gadgets, but more with his personal time, energy, and love of the outdoors.  In our backyard you will find a growing garden- created and cared for by Chris and his boys.  A homemade fire pit gives our cold nights somewhere to make s’mores and sit to talk.  Lattice work around the porch is covered with vines of ivy, crawling their way to an overhead canopy providing shade on sunny days.  A fort and small treehouse were built by father and sons, using their imaginations and spirit of adventure.  Among all of the additions to our backyard that have made it a peaceful refuge from the real world, the flourishing green grass has to be my favorite part.  

We all know that smell from childhood of freshly cut grass.  My brother and I played Red Rover, Freeze Tag, and Red Light/Green Light with the neighborhood kids until being called in for the night.  I practiced gymnastics for hours in the grass of my backyard.  I used to pick the individual blades and turn them into vibrating kazoos.  Anyone else do that? There’s just nothing like walking through the yard barefoot and lying down on nature’s mattress. (Except now as an adult, I am more aware of what lies within the grass itself, forcing me into chairs instead…)

There were always backyards that were larger and more adorned than mine growing up, and this continues to be true today.  There’s no doubt that many houses all over my town have yards that trump ours in beauty and landscape design, money poured into them, sheer size, and the green hue of their grass.  Still, others have lawns that are sun-scorched, brown and dead.  Overgrown trees shade the grass from the needed sun, leaving it to turn to dirt and roots.  
This directly lines up with life in one major way.  No matter what your backyard looks like, it always seems like the grass is greener on the other side.  So it is with life as well!  For some, this may be true in only a few small ways, but for others, this view can tear into their own personal existence.  Whether you are wealthy, poor, successful, struggling, healthy, sick, beautiful, or average, you find yourself looking into other people’s lives, and seeing something you don’t possess.  

Life with Elise can exacerbate this belief.

As her mom for almost a decade, my eyes have been forced open to the raw reality of what it means to have a little girl that doesn’t fit in any traditional “daughter” mold.  Having Elise as a daughter, sister, granddaughter, and niece in this family of ours has changed the rules to this game called life.  It’s hard to play a game that you grew up playing, and thought you understood, only to realize that the rules have changed, the game board is now missing vital pieces, the cards are all mixed up, and the timer is broken!  Only through the grace of God have we learned how to go about daily life without quitting the game or calling “NO FAIR!” when others seem to move ahead or draw the prized card.  For me, that prized card is a whole, healthy family.  Simple.  

That’s me, on my tiptoes, peering into everyone else’s backyard with envy.  This is my honest truth, but what do I do about it?  Well, being on my tiptoes gets tiring pretty fast.  With prayer, I go to God and ask Him to take me by the hand and lead me away from that fence and further into my own yard.  It’s there that I can fully enjoy what He has given me.  Yes, I can still hear the sounds of life coming from every direction beyond my lawn, but the more I fix my eyes on Elise and my family, the quieter the distractions become.  It just takes a desire for change… a willingness to shift my focus.  

Comparing your life to the lives of those around you can roll through your world like a speeding train.  If you’re not careful, you can purchase a ticket, find your seat, and get mighty comfortable on that train all before you even realize it.  Before long, the life you do have is passing you by at 100 miles an hour like a blur through the window.

Take Facebook.  I personally love Facebook.  It has served as a never-ending reunion with people I would otherwise never see again after throwing my hat at graduation.  It has connected me with friends I see often, people I shared my toys with in Preschool,  college roommates,  my elementary school teachers, and next door neighbors from when I was 5-years-old.  You just can’t beat that!  With all good things come some bad, though, and it is our job to separate the two.  After a typical day of what can seem like nothing exciting really happening in my life, I will sit down at the computer to check up on FB for a minute before fixing dinner.   

Well, crap… It looks like everyone else was up at dawn, preparing for THE BEST DAY EVER!!!  Packed full of unforgettable family moments, visits to educational and entertaining venues, and finished up with getting TONS of chores and projects done at home to round out the perfect day in history!  

Here’s where the problem lies.  We forget that this is ONE day in the life of a friend.  Not every day.  We all have great and productive days, it just seems as if everyone is having them all of the time b/c of the posts we see on social media.  This is not to say that I don’t post fun family times on FB.  We have soccer games, go swimming at GiGi’s house, take road trips, play family games, and I even get a few projects done here and there.  But, for the most part, I rely on my husband’s level head, and lack of a FB account, to keep me from wondering, “Why aren’t we able to do all of that?!”  This is an area where I have learned to water the grass in my life.  I have purposely worked hard toward changing my train of thought, and instead I am able to see things from a perspective that doesn’t leave me thinking, “I wish I had…”, or “It sure would be nice to be like…”  

This sort of glazed-over view of life is not reserved for Facebook alone, but creeps into our homes as well.  Over the last year, I have worked on a “picture wall” that I desperately wanted to create in our front room.  Looking at that wall paints a picture that we are the coolest, happiest, most loving family in town.  Maybe in Texas. The family portraits that hang on our walls are as good as it gets.  They are a snapshot in time, not accurately reflecting our true lives.  That’s WHY we hang them on the wall.  Why would we want to look at reality?  We experience that all too often already!  


On the wall:




Reality: 



(I actually came home from Bible study one night to find her like this.  Nice job, daddy!  She was happily sleeping, but still...)


Sometimes, though, the peeling back of this facade can be jarring and disappointing, threatening what we think we know.  When I was growing up in the 80’s, The Brady Bunch was my absolute favorite TV show (just slightly above Punky Brewster, Knight Rider, Little House on the Prairie, Airwolf, and Diff’rent Strokes.)  I could dominate in a Brady Bunch trivia contest after all of my years of watching and re-watching every episode of that show.  I loved their family, their house, and even their backyard.  I was, and still am,  a fan of everything “Brady”.  As I grew older and learned about how television shows were made, I remember feeling so disenchanted by it all.  It only takes watching one behind the scenes documentary or entertainment show to dissect all of my prior thoughts and emotions toward that show into a pile of disappointing reality.  Not only was it all fake (obviously), but the kids didn’t all get along,  the mom was a bit of a naughty vixen type in real life, and the dad turns out to have fought mercilessly with the show's creator and producer.  The crushing of my childhood image of this show really began when I was still a young girl and was told that the grass in their backyard, which I assumed was a real backyard somewhere in America, was outfitted with AstroTurf!  You mean the potato sack races, games of football and even the teeter-totter contest were all done on FAKE grass in a FAKE backyard?  Good grief...




So much of what we see and desire from beyond our personal viewpoint isn’t real grass anyway.  It’s like the Brady’s backyard.  It’s AstroTurf.  It isn’t reality.  We see and believe mere snippets from the lives of our friends, extended family, others in our community, people on television, movie stars, and strangers we will never meet again.  Envy doesn’t begin and end at just possessions or lifestyle.  It can be about ideas, marriages, health, social status, kids, beauty, body image, work, and on and on. 


Chris bought me a chalkboard for Christmas that hangs in my kitchen with the words Verse of the Week on it.  The idea is to write a new verse to memorize on the board at the beginning of the week, see it every day, commit it to memory and start over the next week.  I should rename our board to say Verse of the Season, seeing how that’s how long our verses stay up in order to be put to memory!  My 11-year-old, Lane, finds no trouble in remembering the verses (show-off), and loves to pick the next one.  His latest pick showed up a few weeks ago.  It reads:


“A heart at peace gives life to the body, but envy rots the bones.”  
Proverbs 14:30


Not only is this an easy verse to memorize, it also offers up a great visual picture of a Biblical truth that should be taught to our children at a young age.  I love the thought of saving them some unnecessary grief in their lives as they grow up.  What is just as important as the verse itself is understanding that this is something that you can actively and frequently ask for from God.  A heart at peace is yours for the taking… no matter what your irritation, painful experience, disappointment, heath crisis, or overall upsetting situation. 

There is NOTHING peaceful about life with Elise.  Nothing.  That’s not what my goal is, though, when I think of peace in the sense that it is written about in God’s Word.  After asking God for a heart at peace regarding all that is going on with Elise, as well as with what I may see in other families that I don’t have, I can truly tell you that He provides it.  

Our thirst to seek out what belongs to others doesn’t just stop at possessions, physical beauty, and life circumstances, but it manages to sneak into our salvation as well.  During a conversation between some of my close friends and me, the subject of testimonials came up.  Several of these Christian, faithful women expressed a sort of disappointment in the fact that they had “boring” testimonies.  Their experiences of accepting Christ did not include a certain day and time that they can recall.  They didn’t have a conversion from being an active “unbeliever”, one that lived away from Christ, to a believer with a memorable story to tell their children and grandchildren one day.  These types of testimonies are among the most inspiring, because of the way they display such a transformation, often creating completely opposite bookends to the story of one’s life before and after Christ.  

In the shadows of the youth groups, women’s and men’s Bible studies, and sanctuaries all over the world, there are people who are in some way envious of these tales of conversion.  Although I am a member of this club in the fact that I do not have an inspirational account of asking Jesus into my heart, I have learned to step out of the shadow of this deceptive way of thinking and to appreciate my story as one that is just as genuine and important as those that would draw tears from most. 

I asked my friends what they would want their own children’s testimonies to be.  Do they wish their sons and daughters to live a life apart from God, not knowing Him, questioning His existence, or challenging His Word until an eventual coming to Christ, just for the sake of a good story… an inspiring testimony?  Or, like me, do they pray that their children look back at their life and proudly announce:

 “I have ALWAYS known Christ.  Since I was a child, I just can’t remember ever being apart from Him.”  

When looking at it this way, it is easy to see how foolish we can be in our attempts to devalue even what is most vital in our lives… our salvation.

Personally, I think of my testimony as being more about the places that I have seen God the most in my life.  The most significant of these would have to be Elise.  She is my testimony.  We all have or will have a personal testimony that has no room for comparison with anyone else’s.  This must be God’s way to show us our own uniqueness in this enormous world of ours.  He gives us what He desires, leaving us to hopefully find contentment without comparison.  

Several months ago, about an hour after putting the boys to bed, I went in to check on Elise.  I was surprised to find Lane in bed with her.  When I questioned him on why he wasn’t in his bed, he said that he had been reading a biography on Helen Keller in his room and he felt like he wanted to be with Elise.  I took the opportunity to snap a few pictures of them laying side by side.  This is a rare occurrence these days, but was reminiscent of the years when they were little and spent more time together.  While he enjoyed stroking Elise’s hair and holding her tight, little hand, he said, “I wish she was more like Helen Keller.”

Talk about a phrase NEVER muttered by ANYONE EVER… until now!

To Lane, though, this comparison made sense.  Being more like Helen Keller would be better for his sister.  He has a firm grip on what to dream for her.  It was interesting to me that he didn’t say he wished Elise could be like other typical little girls- that she could see, hear, walk, talk, and so on.  No, he sees those goals as beyond his sister’s yard.  

Lane was finding envy in something that the rest of the world would see as the complete opposite. Striving to be like Helen Keller seemed more appropriate to him… obviously impossible, but still something to be safely dreamed about.  




It was innocent enough of him to want more for his sister, even in a way that seemed closer to obtain for him.  But, this shows us how absolutely far the tentacles of covetousness can reach.  I don’t blame Lane for his feelings and desires for Elise.  He only wants a better life for his sister.  Coveting what Helen Keller could do and who she was, like all acts of envy, is a natural human thought process... a disappointment just waiting to happen.  This gave me a great opportunity to talk to Lane about how I have to keep a constant look out for times of wishing Elise were different.  We talked about contentment and joy in even the most painful and discouraging circumstances.  

Christ is always right there ready to smack me across the head when I start to feel myself melting into heartache over the life Elise has to live, as well as our life as a family with her.   I’m not talking about times that I want her pain to go away, or her seizures to stop.  Praying and desiring for her to find comfort and have a better quality of life are obviously expected.  I’m referring more to the times that comparisons to other families around us can threaten to steal my joy.  I whole-heartedly thank Christ for the “smack-downs” that he has provided me when I become trapped in this thought process.  I will witness a child in a waiting room that needs 3 adults to keep him from escaping or tearing the room apart.  I hear of a mother with a child much like Elise, but with the addition of major health problems on top of the brain injury, landing them in the hospital for weeks at a time.  I meet a family with a severely brain injured child, but no family or church behind them as support.  All of a sudden, my daughter sitting in her wheelchair next to me doesn’t seem so bad after all.  Of course, her situation is bad, but witnessing other people’s realities can quickly tint my view of our life with Elise a rosy shade of pink.  

There’s definitely something to be said for praying for contentment.  I wrote about that here.  But, you just can’t hand that off in a prayer and expect to not play a part in getting there.  At what point do you do something about it yourself?  It’s difficult, not fun, and downright opposite of how we have been taught by the world.   The truth of the matter is, though, that you have to actively work toward something better.  It is so easy these days to stand looking at everyone else's paths and how they seem so easy and smooth compared to what you may be walking through.  Boy, do I know something about that!  I am dedicated, though, to care for my path, with prayer, time in the Bible, and hard, personal work on myself, in order to travel easier on it.  I know this is what so many others are seeking as well.  Work on it…  water your flowers, pull your weeds.  Get help where needed, but don’t close your shutters, blocking your view of the mess in the back.  Eventually, we will all have to answer for it. 


1 Thessalonians 5:18 tells us---

“In every thing give thanks: for this is the will of God in Christ Jesus concerning you.”

The way I try to apply this verse to my life, in particular, is to stay aware of the difference between being happy/giving thanks for something, and being happy that it’s happening.  I will loudly proclaim that I am not at all ok, happy, or thankful that Elise isn’t the kind of little girl that I see in other families. That fact does not have anything to do with me being thankful to God for her, and being happy as her mother.  This isn’t a natural, human response.  I specifically ask for it, and then I receive it.   What are the things God has graciously given to you?

My husband took the time to carefully care for and nurture our lawn.  He put in the work to build the clubhouse, plant the garden, and patiently water the grass.  It’s the same with our lives.  We can take the lazy path, only looking over the fences into other’s lives, or we can take the time and effort to work on our own lives, making them pleasing to God and a testimony of His love.  

I am dedicated to watering my own yard, and to stop judging my life by the Astroturf down the road.  










This is our backyard that Chris has enjoyed nurturing...



Just kidding, this is a picture my brother took at Yellowstone National Park!



THIS is our actual backyard.  Not quite as grand, but our own personal sanctuary!







Fort Woodmoor



This is “Fort Woodmoor" (Woodmoor is our street).  It is a favorite hangout for kids of all ages in our neighborhood.  The boys have had a blast helping their dad build and add on to it!






Every time I look at our garden, it reminds me of what can come out of a pile of mud if you are willing to do the work. (The mud in your life can manifest itself in an endless number of ways.  We all have a mud pile somewhere).  Instead of being irritated that the previous owners didn’t grow a garden, or that some people I know had ones twice this size, we decided to improve ours ourselves.  It took a desire to change what we had to something we wanted.  I will admit that the boys, Chris, and PawPaw did all of the work, but I sure benefit from it.  It is now a beautiful garden that has produced all kinds of foods for us.  What started off as a bunch of nothing was turned into something gorgeous and useful!



Gross

 

Lane and his friend, Andrew getting ready to work!





Beautiful, and well worth the effort!





In the yard (and life) that we have, we try to smash in as much fun as possible...




Giant Jenga



Racetrack made of PVC pipe... 
(cheap-o, Texas summer fun!)







Slip N' Slide made out of Elise's old therapy mat.  Just add water and soap!  





A warm and quiet place for Lane and Chris to have talks and the occasional Bible study (and eat S'mores).






A view from my yard.  

This is a picture of the sky God created for each of us, visible from every yard (life) in town...no matter how big, small, lush, dried up, mowed, or overgrown.  We ALL have the same view of God’s grace and power if we take our eyes off of others and look up!




























Friday, May 2, 2014

"Quit Hitting Yourself!"





I was 9-years-old and struggling to breathe, as my little body was being squeezed mercilessly by my older brother.  He had me in a classic scissor hold, trapped between his legs, gasping for air.  As if this wasn’t humiliating enough, my loving brother topped it off by grabbing my own hand and forcing me to hit myself in the face.  

“Quit hitting yourself!”, he would yell over and over, as I whimpered in defeat.  
Always defeat…

I never would have guessed that decades later, I would be saying this to my 9-year-old daughter… (just not for the same reason.) She can’t hear me or understand my words, but it doesn’t stop me from pleading with her, “Quit hitting yourself, Elise!”

Of all the issues that Elise deals with on a daily basis, the fact that she hurts herself in a variety of ways has to be her most devastating challenge.  We can deal with deaf.  We can handle blind.  We cope with her cerebral palsy, and muddle through her daily seizures.  What I can’t seem to wrap my head around, though, is her self-injurious behavior (SIB).   

This post is for any other parent or caregiver out there who helplessly watch as their child hurts themselves, while trying your best to protect them.  This will at least show you that you’re not alone, even though I definitely feel that way most of the time.  Trying to make any amount of sense out of your child’s SIB can be incredibly frustrating, as it seems like a puzzle never to be put together.  

Hopefully, in our story, you can find some solutions helpful hints.  I only ask that if you have ANYTHING to add that could be helpful to this struggle, please comment below.  I am always desperately seeking new ways to deal with this insidious condition.  This is the part of Elise that I understand the least about, which results in a string of failed attempts to control her everyday struggle.  

*** It is extremely difficult for me to post these kinds of pictures of Elise on my blog, but it is a very real and true depiction of life with a child with severe brain injury.  Not all suffer with this type of behavior, but countless children/adults do. I don’t post pictures of her in this way, because who needs to see my baby girl with blood on her face and hands, or a black eye on her innocent face?  But, since that is what this post is all about, I had to bite the bullet and reveal the “not so pretty” side to life with Elise. ***



This is Elise’s situation, what I know about SIB, and what we have tried...


Chin Hitting

Elise started hitting herself when she was about 3-years-old.  One day, out of the blue… BAM!  She aimed the heel of her right hand directly onto the right side of her chin.  

“That was odd,” I commented at the time.  

Fast forward many years later, and it ain’t so odd anymore!



You gotta love the action shot!  When it comes to hitting herself, the harder it is, the better.  







Another good action shot… You can see Elise doing this any day of her life.  Some times are worse than others.  






 It doesn’t look like a very strong or violent hit, but trust me, it is…




Head/Face Hitting

This is, by far, Elise’s SIB of choice!  Shortly after her first experiments with hitting herself on the chin, she quickly progressed  to hitting herself in the right temple.  This is a pretty safe target, as is the jaw.  These two areas, though, have sustained so much hitting over so many years that the tissues have changed in her facial structure, resulting in an unbalanced/non-symmetric face if observed closely.  Her chin remains larger on one side, and her temple protrudes on one side, as if a permanent knot has formed under her skin.  (She has been thoroughly checked out by doctors, and we have been assured that, other than the facial areas changing shape/contour, nothing is broken or fractured… at least not yet.)














Hitting her head/temple in bed...



Could she stop there?  Noooooo… she eventually moved on to banging on her sweet nose, pretty mouth, and baby blue eyes.   Putting these areas of her face under this amount of abuse has proven much more damaging. 

She has knocked out several of her baby teeth, given herself black eyes, split her lip countless times, and scratched her face in many places.  
 It started innocently enough with minor red marks and small bruises on her face.  






But, in time, she has honed her skills as a self-boxer, resulting in more obvious injuries! 








It doesn't take long at all for her to inflict this upon herself, and many times we aren't even aware.  She cries most of the time, so we can catch her and stop her.  She is beginning, though, to wake up at night and hit herself in silence, giving me a big surprise in the morning!

There’s nothing as jarring as going into Elise’s room in the morning to get her ready for the day, and discover that, during the night, she had silently beaten herself up.  The same actions that can result in her screaming in pain and irritation, can also serve as self-calming behaviors.  This fact creates many problems from our point of view as her parents.  It underlines, italicizes, and boldly screams, "I need something/feel something, but I can't tell you!"


No matter how many times she beats herself up like this, it is still shocking to see her go from the picture on the left to the picture on the right in a matter of minutes. 





Biting Herself


Did she stop at hitting herself on the head/face?   Heck no...on to BITING herself!

Many children with Elise’s level of brain injury keep their hands in and around their mouths most of the time.  This provides them comfort, serves as a stimulation, and satisfies a primal need, not unlike that of small babies.  As babies grow out of this behavior, lots of kiddos with brain injury just keep on at it, year after year.  I’m glad she has her hands to occupy her when she isn’t getting attention from others.  Unfortunately, it doesn’t stop at that.  When Elise is having a bad time with her SIB, she will bite her hands until they bleed.  For years she kept the biting shallow enough that it provided her with what she was going for without actually hurting herself.  One day she decided, “Hmmm, maybe I’ll put a bit more force into this!  If a little is good, why not a lot?”  The result is bloody hands covered with cuts and callouses.  








This is a good combo picture.  Face and hands...




Head Banging

One of Elise's more startling behaviors to the outside world is her head banging.  This started when she was very young, maybe around 2-years-old.  While on her back, she will pull up her head, (yay for the head control!), and slam it back down on the floor.  She doesn’t do this in a bed where the mattress underneath her is soft, but she saves it for the hard surfaces.  I remember thinking she was so clever when she was just a little thing, and when put on a changing table, she would recognize that the surface was hard.  She would rear her head up and bang it back down on the table as hard as she could.  I know with all of my heart that if you were to put Elise on a hard wood or tile floor and leave her there for any long period of time, she would beat her head until she passed out or died from trauma.  She doesn’t have that “OFF” switch that tells most people, “I should stop, this really hurts!”

Banging her head has also proved detrimental to her wheelchairs.  She hit the headrest of her first wheelchair so forcefully and so often that the metal just snapped!  Her wheelchairs now come with stronger headrests, though my husband has to tighten them often because they are no match for her little head!  




Hair Pulling

The last main form of SIB that Elise deals with happens to be the least damaging.  The girl loves to pull her hair.  This is mainly done when she is tired, and not in the way a baby or toddler twirls or tugs on their hair as a bedtime ritual kind of thing.  She puts all of her strength into it!  This is a behavior that we do not interfere with.  She has yet to actually pull her hair out, so if she needs to do this to calm down and sleep, go for it!  (Just crossing my fingers she keeps it at this level… I don’t need to add hair loss to what we’re dealing with here!)











What We Have Tried 

These are a few of the things we have tried over the years.  Some work, some don't.  You'll never know until you try!    



Homemade Boxing Glove 









Yes, that is a big, pink boxing glove (made out of foam and socks.)  It worked ok, but would quickly become soaked with her spit, making it a pretty gross option.  It was also cumbersome and hard to keep on her hand.  We moved on...


Arm braces/Elbow Immobilizers/No-Nos







When she was smaller, we had the most luck with this knee immobilizer.  Yes, these braces can be used in all kinds of ways!   It fit her arm perfectly, and kept her arm from bending up to hit her face.  She did figure out how to throw her braced arm in the air and against her head for a little fun, but no harm ever came of that. 





Arm and leg braces are used often to keep these kids from using their arms/hands to hurt themselves, so they can serve a double purpose.  We have always been given a pair here and there by our orthotics guy.  These are actually knee immobilizers, but they work as well as ones for the elbow.  






I mentioned these in my post about Cerebral Palsy (here).  This was an arm brace we tried years ago, specifically for keeping her arms outstretched to work on loosening up her spasticity.  We didn't really think this one through.  Turns out, it hurts pretty bad when you hit your face with your hand/arm and get a face full of metal.  Not the best design for a hitter!


Baseball gloves w/ fingers cut out





This was not her best look, let me tell you!  We got the bright idea to get her some baseball gloves and cut the fingers out.  We were trying to prevent her from chewing up her hands.  These worked well, except for the spit mentioned above with the boxing gloves.  They would become saturated, and then irritate her skin underneath. In a pinch, they are a good option, though...



To Medicate, or Not To Medicate...

I have seen the debates on internet blogs, forums, and FB.  I am aware that many parents/caregivers try to do everything possible before trying medication.  I get that. Elise is on so much medication just to function daily, that when I drive up to the pharmacy window, they just go get her prescription.  No conversing necessary!  We also give them a Christmas gift each year :)

The thing is, that "no medication" ship sailed a LONG time ago for Elise, and if there is something out there that gives her some relief, I'm gonna get it for her.  Our medication of choice for her SIB has been Risperidol (Risperidone.)  This cuts her hitting/biting in half.  She still does it a lot, but not nearly as much as when off of the medication.  I don't think any prescription will completely stop her behavior, but we are thankful for how much it does actually help.  It took us several medications, and even going back to ones that previously failed to help her, before getting the right drug + dosage to be helpful to Elise's SIB.  Frustrating, yes... but DEFINITELY worth it!

As Elise's parents, we have always worried about what the medications ultimately do to Elise as a person.  Over the last several years, as her medications and doses have increased due to escalating SIB as well as uncontrollable seizures, we have definitely noted the sad fact that Elise's personality has taken a hit.  The twinkle in her eyes has faded to a point.  This is a definite situation where you have to weigh the pros and cons.  Is it worth getting back some of that *twinkle* in her eyes, if she is determined to knock them black and blue?  Regaining some of that younger personality she had would be great, but could it really show through if she couldn't stop screaming, biting her hands, and splitting her lip open?  It's a trade-off... one of many heart-breaking, but necessary decisions that we have made for her with her best interest in mind.  


My LEAST favorite, but MOST used option... Personal Intervention

This is what we do most of the time to help Elise out with her SIB.  It is also the most exhausting and time-consuming option.  Oh, and it looks bad in public.  

Personal intervention, for us, means replacing the action that Elise is doing to herself with something with just enough power behind it to satisfy her without hurting her.  If she wants to start banging away on her temple, jaw, face, or head, we will just take the place of her hand with ours.  I know just how hard to "hit/tap/pat" her in the head/temple to appease her, but without harming her.  I promise... she likes it!  

For example, when I leave the table at Chilies to go to the bathroom, I tell my mom or husband, "Can you hit Elise for me?"  Chances are, I've been "hitting" her with my hand to her head throughout the entire meal just to keep her from doing it much harder to herself, crying, and causing a scene.   (Every time I write about us being in public somewhere, I have us sitting at Chili's.  I'm not sure why... we go other places :)

A few weeks ago, I asked a  friend at church to hit Elise on the head while I had to step out of the room.  I overestimated our friendship, I think, as he looked at me like I was nuts.  His wife, however, was more comfortable with my request.  She knows just how hard to "pat" Elise to keep her happy.  (Thanks for nothing, John Bregere!)

This is a fine line. 

I, as her mother, the rest of her family, close friends and teachers know just how much muscle to put into this action.  Elise does not enjoy being patted or touched in a light, easy way.  Kids like her often prefer touch to be heavy, forceful and even jarring.  



My point is, this may look like some sort of abuse or negative action when seen from the outside by people who know nothing about Elise.  I had to quit caring what people thought.  I figure, if they can see the result is a relaxed, happy little girl, hopefully they won't have the urge to call CPS!  





Other Forms of Stimulation

One last way that we try and curb Elise's SIB, is by giving her plenty to occupy herself.  This is a huge challenge when dealing with a deaf/blind child that can't use her body to play like typical kids do.  Most of what Elise enjoys includes vibration.  Her toys vibrate, she's had a vibrating toothbrush, and her bed even vibrates!  This makes sense for someone lacking so many senses.  She can "feel" her world better this way.  

The following has been a very useful product for us.  

(Ok, so, before I go any further, I want to let you know that I've heard all of the jokes there are about this product.  I've even told a few.  So, just take a moment to clear your mind of any silly thoughts and let's get on with it!)  


The Vibrating Snake 







The Vibrating Snake With a Switch





This is something that we can put in her chair with her, wrap around the bottom of her standing frame (to help with circulation), put on her mat with her, or just give her to provide some much needed input.  If your child knows how to work switches, or likes switches, you can buy the one that is switch activated.  This gives them the ability to control when the snake is on and when it is off.  
Pretty cool...


Boredom is Elise's biggest enemy.  It also brings out her SIB like crazy!  At home and at school, she is played with, worked with, given opportunities to be in different environments, and to play and work with a variety of toys and switches.  She has something to occupy her for many hours each day.  This is a sure-fire way to keep the SIB away.  She LOVES attention, and will hog any that comes her way!  

We also provide Elise with plenty of personal, hands-on, "in her face" time.  This is HER favorite solution to controlling her SIB!  Most times that she is given up-close and personal treatment, she stops the hitting, biting, and hurting of herself to just enjoy being the center of someone's attention.  



Why is she hurting herself?” 

Four months ago, she screamed and hit herself in the face, until we discovered she had esophagitis, resulting in years of unaware damage being done to her esophagus that she couldn’t communicate to us.  

Last month, she hit her head repeatedly because she had an undetected ear infection.  

Two weeks ago, she gave herself a black eye and a split lip on the bus just for the heck of it (probably just bored).

Yesterday, she bit her hands as she screamed in delight while I played with her. 

Today, she has hitten, bitten, screamed, and all together thrown fits for a reason I may not figure out.  


These behaviors go against all that we, as typical, non-brain injured people know and understand.  Although we are continuously perplexed by this question of why, I personally believe that there are 2 main reasons as this pertains to Elise:  


#1: She is sick/hurting/uncomfortable in some way.  This is extremely hard to figure out, and I have thousands of dollars of doctor bills to prove it!  The culprit can be as big as an unnoticed but painful infection, or as small as a stuffy nose.  I also believe she is in discomfort much of the time due to the spasticity of her body, as I wrote about in the post about Cerebral Palsy mentioned above.  She can also sense when she is about to have a seizure, and often hits herself extra hard in the seconds preceding it.  

This girl can feel the slightest change in her health, and this is how she deals with it.  Unfortunately, hitting herself only creates more pain and discomfort.  This is a cycle not to be understood by Elise, so if WE don't stop it, SHE would continue to hurt herself to no end. 


#2: Lack of outside stimulation.  In short, she can't see what we see, hear what we hear, or use her body in the ways we do to create our own stimulation.  Like twirling our hair, chewing gum, tapping our fingers on a desk, bouncing our leg/foot, and all of the other stuff we do daily to regulate ourselves.  



There's Always a Brighter Side...

OK, so maybe there's not really a "brighter side" to this aspect of Elise's life, but I have a hard time ending on a note that isn't at least a little uplifting.  How about this...  

To make things fair after posting all of these pictures of Elise not looking her best, I will now put up a picture where her family looks like weirdos and she gets to look like the only normal one of the bunch! (Except for Poppi in the front... spoil sport!)