Category Archives: Special needs parenting

A Monitored Life

The biggest challenge a new parent faces typically involves dealing with the lack of sleep that comes with having a newborn. “If they will just sleep through the night,” is the cry of countless young parents.

New mommies check and recheck the baby monitor fearing that it might malfunction and cause their precious baby’s cries to go unheard during the night. As the months pass by the moms begin to become more comfortable and life starts to level out as that sweet baby begins to need them less and less in the middle of the night.

Around age two most parents transition their child into a big boy/girl bed and once again the obsession with the baby monitor rears its ugly head. Fearful that the child might become afraid in their new bed the mom and dad once again begin their ritual of holding the monitor to their ear to try to determine if it is functioning properly.

After a couple of non-eventful months the parents settle into a comfortable confidence that everything is going to be okay. Around this time the child masters the use of the doorknob and many times the parents wake to find a toddler face pressed against theirs saying, “You sleep Mommy?” Maybe they can’t sleep, need to go potty, or want to cuddle up in bed with their parents but I think it’s pretty safe to say that most parents can relate to the scenario of being wakened by the pitter patter of little feet running across the floor in the middle of the night. Once again the parents’ plea is “If they would just sleep through the night!”

The three scenarios I described are pretty much universal to all parents except for a few. The ones that don’t fit into that category have a special category all their own. It is called Special Needs Parenting. I have been blessed to live both scenarios.

My oldest son went through all the stages I described until there was finally no need for the coveted, sometimes hated baby monitor. My youngest son’s experience has been totally different. Instead of ditching the baby bed between 18 months and two years, he stayed in his baby bed around four or five years. I was terrified he would roll off a big boy bed so he stayed in a crib until it just wasn’t possible anymore. Ditching the crib was a big deal and we actually switched him from the crib to a mattress in the floor so that his fall was much shorter when he DID roll off.

Another big difference in the experiences was the obsession with the baby monitor. I really don’t remember using a monitor for long with my oldest son. As soon as he learned to get out of bed and run into my room I suppose the monitor was ditched. My experience with Sweet G’s monitor is totally different. I have been obsessed with G’s monitor from birth until the present. We are on our second or third set of monitors. I still hold the monitor close to my ear almost every night listening for the slight sound of a sigh or grunt as Sweet G moves around in his bed.

My child is ten and a half years old and I still live in terror of a malfunctioning monitor. I have good cause to worry because we have had several mishaps after the monitor failed to alert me to my child’s calls in the night. Sweet G is totally dependent on others to see to his midnight runs to the bathroom. He is unable to get out of his bed and make it to the bathroom and back independently. I have been awakened by his screams from the other end of the house on more than one occasion and several times I’ve woken in the morning to find him lying cold and wet after spending the night in the floor soaked in his own urine because I was unable to hear his requests for help during the night. He calls to us in fear of falling off the bed or sometimes because the covers have become tangled around his legs.

I’m not telling this story to get sympathy or admiration. I don’t write it out of the regret of being a special needs parent. I would not trade my experience as G’s mom for anything in this world. His disability is a part of who he is and if I hate it then I basically hate him and that could never be possible. He has the sweetest spirit, the quickest wit, and the determination of an Olympian. He loves deep, he is faithful to the end, and he is my inspiration. I simply want others to understand that each persons path is different. You never know what its like to walk a mile in someone else’s shoes. But maybe if you stop and think about it you might understand a little more about the people around you.

So, for the tenth year, fourth month, and 19th day I will lay in my bed listening to the hum of a baby monitor. I strain to listen, hoping that it will be reliable and provide me with that connection to my child as he sleeps.

Climbing Out On the Crashing Waves

A little boy sits crying because he can’t be in the sack race. Tears create streaks down his dirty little cheeks as the wash away the dust from a hot summer day. “Why can’t I be in the race?” he sobs.

“Buddy, you just can’t be in the race,” his mother answers.

“But why can’t I Momma? I can do it! Just watch me! I’ll show you I can do it!”

“It’s too hard. You just can’t do it. You have to be able to jump to play that game.”

“I CAN jump! Let me show you that I can,” he pleads.

“I wish that you could but you just can’t. You have CP. Your body just won’t do that.”

Through sobs he manages to say, “I wish CP didn’t exist! I wish I hadn’t been born with CP!”

I’ve dreaded hearing those words for over 10 years. I knew that someday I’d hear them. It was inevitable. The surprising part is that they haven’t been said before. Most kids realize their limitations much younger but Sweet G is different. There is nothing average about my Sweet G. He looks at life through a different window than most of us. His spirit is strong and true. He is kind and good. Anything is possible in his eyes.

As a small baby his favorite song was Dream Big by Ryan Shupe and the Rubberband. I remember thinking how cool it was that he loved that song so much because with his disability he was going to need to be able to Dream Big. I began to think of the words as a prayer for him.

When you cry be sure to dry your eyes
‘Cause better days are sure to come
And when you smile be sure to smile wide
Don’t let them know that they have won
And when you walk, walk with pride
Don’t show the hurt inside
Because the pain will soon be gone

And when you dream, dream big
As big as the ocean blue
‘Cause when you dream it might come true
When you dream, dream big

When you laugh be sure to laugh out loud
‘Cause it will carry all your cares away
And when you see, see the beauty all around and in yourself
And it’ll help you feel okay
And when you pray, pray for strength
To help you carry on
When the troubles come your way

And when you dream, dream big
As big as the ocean blue
‘Cause when you dream it might come true
When you dream, dream big

As he got a little older his favorite song changed to The Voice of Truth by Casting Crowns. That song gave me so much hope and peace and again I prayed those words as we sang them together.

Oh what I would do to have
The kind of faith it takes to climb out of this boat I’m in
Onto the crashing waves

To step out of my comfort zone
To the realm of the unknown where Jesus is
And He’s holding out his hand

But the waves are calling out my name and they laugh at me
Reminding me of all the times I’ve tried before and failed
The waves they keep on telling me
Time and time again. ‘Boy, you’ll never win!’
“You’ll never win”

But the voice of truth tells me a different story
And the voice of truth says “Do not be afraid!”
And the voice of truth says “This is for My glory”
Out of all the voices calling out to me
I will choose to listen and believe the voice of truth

Oh what I would do to have
The kind of strength it takes to stand before a giant
With just a Sling and a stone
Surrounded by the sound of a thousand warriors
Shaking in their armor
Wishing they’d have had the strength to stand

But the giant’s calling out my name and he laughs at me
Reminding me of all the times I’ve tried before and failed
The giant keeps on telling me
Time and time again “boy, you’ll never win!
“You’ll never win”

But the stone was just the right size
To put the giant on the ground
And the waves they don’t seem so high
From on top of them looking down
I will soar with the wings of eagles
When I stop and listen to the sound of Jesus
Singing over me

I will choose to listen and believe the voice of truth

For the most part we have Dreamed Big and listened to the Voice of Truth but every now and then I have forgotten to have big dreams and sometimes I’ve listened as the giant says, “He’ll never win.” But not Sweet G, that is, not until today. Today he realized that dreams aren’t always enough and in his weakness he took his eyes off of Jesus, focused on the waves crashing all around him, and listened as the giant laughed and said, “Boy, you’ll never win.”

One thing I know is that although Sweet G had a moment of weakness tonight, tomorrow will be a different story. Tomorrow we will stop and listen to the sound of Jesus singing over G as He says, “Do not be afraid. This is for My glory,” and out of all the voices calling out we will choose to listen and believe the Voice of Truth!

The Hour Disability Didn’t Exist

It was an unusually warm January day. The world was bright and beautiful. It felt much more like springtime than it did winter. A little boy climbed a hill using his walker, a constant reminder of his disability. As I climbed the hill beside him I had no idea that a miracle was waiting for us at the top?

You see, there was an enchanted object waiting for us to arrive. Most kids take these magical possessions for granted, often leaving them out in the rain or lying in the grass where they drop them to lay forgotten until dad mows the lawn. Those kids don’t see the magic of the object, to them it’s just a common thing, something everybody has. Sweet G and I know that there is nothing ordinary about this thing because we know that the one waiting for us has the ability to make disability totally disappear.

Sweet G approached the item with the aid of his walker but once he turned loose and was safely seated, his disability faded away. It not only faded away for Sweet G, it disappeared from the consciousness of everyone on that hilltop. For an hour Sweet G was just a normal kid. My husband and I were just typical parents. We witnessed something that I had given up hope of G ever being able to experience.

You are probably wondering what was waiting for us on the hill that day. It was a bicycle, not a regular bicycle but a magical one. Someone special provided a hand cycle for children at Infinity Children Services to use. I have no idea who they are but I owe them a huge thank you because when he was on that bike something mystical happened. As he put his hands on the handgrips and started to pedal, he broke away from the bonds of his disability. 

We spent the next hour running back and forth in the parking lot on top of the hill laughing, cheering and forgetting that disability exists. For an hour Sweet G literally pushed his therapist aside and said, “I’ve got this. I don’t need you.” Giggles filled the air as my little boy sped back and forth in a small parking lot on a magical bicycle that has the ability to make disability disappear. For an hour he was simply a little boy having a normal experience with his parents.

Sweet G’s passion for life outshines the darkness of his disability. He inspires me to overcome the challenges I face with dignity and grace. Sweet G has life figured out. He knows the secret to living a full and abundant life regardless of his circumstances. The world would be a better place if we were all a little more like my G. If a miracle cure was found today that would forever erase every trace of G’s disability, I’m not sure I’d want him to receive it. However, I would like for G to have one of those magic hand cycles so that when ever he wanted we could make his disability disappear for an hour or two. ; )

Our Smokie Mountain Adventure: Part 1

The day was filled with excitement because my family and I were leaving after school to go on a weekend trip with a few of my classmates from high school. We had rented a huge house and were going to spend the next three days catching up with each other. It had been snowing here most of the day so school was released early. We hurriedly finished packing and finally hit the snow covered roads headed for the mountains three hours away.  A few of my classmates had already arrived at the cabin and reported no problems on the roads, so we kept our focus on getting there as quickly and safely as possible.

The roads began looking worse the farther from home we got. It was late afternoon and we felt sure that if we made it by dark we would be okay. My son and his girlfriend we’re following us in his car. It is his first real experience on the interstate and his first time driving in snow. Needless to say, I was a nervous wreck. About half way into our trip I started to feel sorta queasy. I assume that it is nerves and car sickness and manage to keep my nausea at bay until we stop for a bathroom break. As we are about to pull back out into the roadway a sudden surge of nausea hits and I lose both my battle and lunch in the blink of an eye. It is now that I start to question whether I could possibly be suffering from more than car sickness and nerves but we have come to far to turn back now. We are closer to the cabin than we are to home and it is beginning to get dark.

Back on the highway we drive slowly making our way to our destination. We turn off the main road onto a very narrow country road filled with hills and curves.. Cars are sliding off the roadway. So far we are fine and haven’t had any trouble. We were within a couple of miles of our destination. This is the point that my “friends” decide to tell us that we will not be able to get to the house. The drive is icy and dangerous. They tell us to stop at a convenience store about a mile from the cabin.

I have managed to keep from throwing up since our last stop but as the gravity of our current situation sinks in, my nausea comes back with a vengeance. My husband buys me some zip lock baggies and I begin to fill them up. One mile separates us from a nice cozy cabin filled with old friends. We can’t walk the rest of the way in the dark pushing our disabled son in his wheelchair. What are we going to do?

To be continued. . .

SPARKS

Parenting a special needs child is a very different experience than parenting a “typical” developing child. There are pros and I suppose there are also cons for each. Being a special needs parent has given me more time with my child. He is content to sit and talk to me because his disability has prevented him from achieving independence. If there is a con side to that it would be that I also lost my independence. Free time is something that I am not often afforded. My hobbies have become things of the past. Days of painting and cross-stitching are far behind me. I do manage to fit a book or two into my schedule now and then and have recently taken up gardening after an eight year sabbatical.

I recently realized that our family needs to be in church on Wednesday nights. For years we were involved with the AWANA program in some form or another but stopped serving and attending on Wednesdays due to overload. I was in school full time, my husband works lots of hours, and Sweet G absolutely hated going to AWANA club so we called a time out that has lasted way too long.

After hearing that our men’s ministry was going to do a Bible study on the new “Courageous” movie coming out in October, I felt lead to encourage my husband to take the opportunity to get involved and take some time for himself. That was three weeks ago.

While hubby is in his Bible study Sweet G and I go to Sparks. The first week G was in his walker so we opted to not attend game time because I feared the walk would be to much for G. Last week G had a headache so we left early. This week, however, we put G in his chair and went to game time. I wasn’t sure how he’d like it since his disability makes playing the games very challenging but we tried it anyway.

Tonight was kickball night and the game leaders were unsure how to handle the situation. A friend of mine asked if G could roll the ball to the other kids and I said, “Sure, he can roll a ball.” Sweet G was so excited when I rolled him to the pitchers position he giggled, “I’m just like the Braves, I’m gonna play ball.”

It was planned for G to pitch for both teams. Problem is we forgot to include G in the decision. When the teams started to switch places G said, “Come on Momma, now I’m going to kick that ball.” Not knowing how we were going to accomplish that task, yet not daring to discourage his I can do anything attitude we wheeled up to the plate. I tried to convince him to let me swing his chair and hit the ball but he said, “No, Momma, I’m going to kick it.” So, I moved his feet plates out of the way and helped him to relax his excited legs enough to bend them. The ball was rolled and he kicked the ball (with a little help from Momma).

I am not nearly as young as I once was and why God chose to give me a special needs child later in life I don’t know but I can tell you that my knees don’t spring up the way they once did. In my slip on sandals and creaky knees I managed to get up and run to first base with my G. The pitcher caught the ball and threw it at us hitting G’s chair in the side but we just kept on running!

At one point a little boy who doesn’t know G asked, “What happened to you?” G replied in a tone that reflected his impatience, “I have CP!” It was quite comical to me but made me realize that practicing answering people’s questions might be something to work on. We forget that people don’t always know about disability and some ask what’s wrong with G. It is easy for us to think, “Duh, you don’t know what AFOs are? What’s wrong with you?”

G’s favorite part of the night came when a little girl kicked the ball and hit me in the leg. He just thought it was hilarious. The best thing is that my little boy likes SPARKS, loved game time, and is excited about going each week.” Oh, I almost forgot that he volunteered me to make cupcakes for the entire club next week! He wanted to know what other food his Momma could cook and bring! Little stinker! I know what I’ll be doing next Wednesday while he’s in therapy, baking cupcakes and putting on my tennis shoes! I’m not running those bases in my slip-ons again!

Curious Eyes and the Pain They Cause

As the mother of a child with a disability I am pretty laid back compared to other special needs parents I have met. I try to be understanding when everyone in the checkout lines turn and stare at my family when we enter a store. The children who frequently stop dead in their tracks with gaping wide mouths are smiled at as I quickly navigate Sweet G around their curious eyes.

I try to tell myself that they look because they are curious and because we are such beautiful people that they can’t help becoming mesmerized by our striking good looks. Well, I can’t even convince myself of that one but the point is that I really do try to put myself in the position of the lookie-lou in question and move on with my life. There are times, however, when I have an experience that throws me off balance and leaves me searching for direction. Today was one of those days.

We decided to take in a family movie this afternoon. Sweet G asked to go see Cars 2 and since that is something he never asks for we wanted to take him for some special family time. We bought our tickets before entering the theater. Having arrived a few minutes before the movie was going to start we decided to get in line for some refreshments. As we stood there in line my husband says you may want to take G and go find us some seats. Initially I said, “Why, it doesn’t look that crowded to me.” J replied, “Well, it wouldn’t hurt because all the handicapped section may get full.” Not wanting to disagree, I turned and headed with Sweet G toward the theater.

As I rolled G into the theater and into the main aisle where the handicapped seating is located I couldn’t believe my eyes. Every seat was taken by able bodied people. There wasn’t one disabled person in sight. Oh, my blood started to boil. I just stood there with my mouth agape in disbelief. There was a woman around my age in the first set of seats with her young child. An older lady sat with a young girl in the second set of seats. The third set of seats held an elderly man with a small boy, and two wild unattended boys took up the last set of seats. I stood there for a good minute just looking at them all. Remember that I said earlier that we don’t enter anywhere unnoticed. They all, with the exception of the two boys on the far end of the theater looked straight at me and Sweet G.

What do you think happened? Did the woman my age with a little boy close to G’s age offer their seats? Maybe you think it was the older woman and her grand-daughter who surrendered their seats. Surely it must have been the elderly man who nobly sacrificed his seats for a child in a wheel chair. Maybe the young boys took notice and offered their seats. Who do you think did the right thing and moved out of the handicapped seating so a disabled child could sit in the seating reserved for individuals with special needs like him? If your answer was none of the above you are a winner! Not one person moved from their seat. I stood there amazed at the lack of concern those three adults showed by their complacency. They sat there looking at me and G until I turned and walked back out of the theater.

I returned to the theater with an usher who asked the first lady and her son if they minded moving. The woman very pleasantly said, “Oh, of course I don’t.” She quickly moved to another set of seats and I was able to set down and position Sweet G’s chair beside me.

I could have asked someone as easily as the usher. I’m not sure why I didn’t. The only reason I can think of is that I was so shocked by the lack of consideration those people displayed by their actions to first sit in a section intended for those with special needs, and secondly their choice to stare at us without offering to move.

As I talked to my husband tonight I described my desire to teach Sweet G to be kind and retain a Godly character yet be able to diplomatically stand up for himself. There are some things in life he will simply have to endure and the gawking eyes of strangers is one of them. I struggle with how to handle those situations. I have a hot Irish temper and once angered my tongue often speaks fire and death. I don’t want to be a bad example to my Sweet G. He has a precious spirit that I don’t want to corrupt but at the same time I don’t want a lifetime of being treated rudely to cause him to become discouraged.

Life is a constant balancing act that leaves me struggling to decide the right things to do. I feel so unequipped to parent my sons, to be the wife my precious husband deserves, and to trust and forgive those who offend me. It isn’t like I don’t know what I need to do. I need to turn to my Lord and ask for guidance. Instead I wait until I have extinguished all my earthly ways of handling things and am at my breaking point. But you know what? That’s okay. He understands, He knows me more intimately than I know myself and He loves me (adores me) in spite of all my imperfections. I just need to remember that sometimes blessings come as raindrops. It is then that I run to the shelter of my Saviors arms and there that I find answers and peace.

Just What Every Little Boy Needs

Today was Sweet G’s short therapy day when he only sees his physical therapist, AKA “the mean woman.” G loves her dearly and because of that she bears the brunt of his jokes and abuse. Her job and what it requires G to do is the most difficult physically of all his therapy. G’s legs are the most affected by his cerebral palsy, therefore that is the most difficult and taxing on his body.

Therapy has been ramped up, so to speak, since his tendon lengthening surgery. We are requiring much more from him and he is seeing his PT twice a week instead of once. The surgery has given G so much more range of motion and has eliminated the muscles fighting each other for control. It sort of evened out his muscle tone by lengthening and therefore weakening muscles that have been stretched tight preventing normal movement.

As I wrote in my post a couple of days ago, G has made remarkable progress lately. Today I asked his therapist if we could try him on a bike the clinic has. The bike is a regular bike but has these amazing training wheels that give it perfect stability like a trike. We thought that by adding straps to the pedals and changing the seat to something with a back and straps it might work. Boy were we ever wrong! We put G on the bike, he sat up and said, “Let go, I can do it all by myself.” He had no problem balancing on the regular seat or keeping his feet on the pedals. There was a problem with making it go. His trike is adapted to become hand cranked and he has recently learned to ride his plasma car which propels when you wiggle the steering wheel back and forth so it took us reminding him a few times that wiggling the handlebars does not make it go. He did try so hard to make it move. We were shocked when he stood up on the bike and started saying, “I’m a big man and I can stand up by myself.” As if those things weren’t enough he had to kick things up another notch when we were about to dismount the bike. I noticed that he only had his hands lightly placed on the handlebar so his therapist asked him if he could clap for himself. He steadied himself, took his hands off for a brief second a couple of times and then he took them off completely and gave himself a round of applause. There were a lot of happy people in that gym today.

So, I bet you can’t guess where we went when therapy was over! If you guessed a bike shop a mere three blocks from therapy you are right. I thought that might be best since he kept insisting we borrow the one from the clinic. When I told him we couldn’t he replied simply, “We can bring it back before anyone misses it.” After all every little boy needs a bike.