He is Lost

Psalm 56:8 New Living Translation (NLT)
8 You keep track of all my sorrows.
You have collected all my tears in your bottle.
You have recorded each one in your book.

 

I’ve shed many tears in the past several months. We all have. And I cry out to Jesus a hundred times a day seeking guidance, wisdom, clarity, and discernment. I cry because the once happy child we love that lives in our home and most definitely in our hearts is missing in action. And the child that can’t tell us what’s wrong, has become angrier by the minute. We don’t know why, but he has. It’s so difficult to watch the decline in his moods and behaviors.

Tyson and Me
A moment of rest for T and Me

The words, “No!”, “That’s not okay!”, “That’s not acceptable.”, “We don’t do that.” fall on deaf ears. The constant repetition of trying to explain to this beautiful boy that it is not okay to hit, kick, scratch, punch, bite and be mean to others  or throw toys, plates, cups or any item he chooses to use as a weapon to hurt someone or break windows, electronic items; it’s not okay and he can’t do that. Trying to explain to him, once you have his attention (looking into each other’s eyes and asking him to stop, let’s calm down, dry his tears) that not only do we not want to be hurt, but we don’t want him to get hurt either is an everyday task.

He has always been hyper, ever since he started walking at ten months. He went from scooting to pulling himself up to standing and walking. He totally skipped out on crawling.  Even now, if he is playing on the floor, he rolls or scoots or somersaults his way through the room, unless he’s walking on his tiptoes or running at breakneck speed.  He has one speed and it’s all or nothing. And the nothing only happens when he is given medications to help him sleep.  Even when he is beyond exhaustion, sleep does not come without prescribed medications. His brain never shuts down.

Some friends, suggest putting him in timeout. That would be amazing if we could get him to sit still long enough to accomplish that. Today, I put myself in timeout. Sitting on the opposite side of the safety gate on the steps. He was still being supervised, but I needed a good cry. Trying to remain strong all the time, and not knowing when an outburst will occur is heartwrenching. The child that used to love to play with blocks, legos, cars flying down his racetrack, counting and having fun, I don’t know where he is. The child that loved to paint with watercolors, scribble all over the papers and practice using his scissors to cut, he’s lost.  I see him stand in front of me, but he’s not the same. The little boy that I could scoop up in my arms, squeeze him tight and we could count or recite the alphabet and talk to one another, I don’t see him much anymore. I see a child full of anger, aggression and for lack of another way to describe it totally overloaded in his mind all the time. Shutting down the television, turning off video devices, taking toys away and never giving them back, doesn’t seem to faze him. The music that used to lull him to sleep, while being rocked, he cries and doesn’t want the music very often.

The night terrors are not as bad as they used to be, now we deal with daytime terrors. Fully awake, but he can’t tell us what’s wrong. Yes, he has amassed many words, but unless he wants something, answering questions is still yes and no for the most part. He can answer to what his name is, the street he lives on, sometime’s the city and who lives with him.

He has been up, five times since being put to sleep tonight. Whimpering.  “Please hold me.” So I hold him, we sway back and forth. As he falls back asleep, and I think it’s okay to lie him down. Sleep eludes. The minute I laid him down, whimpers, “please hold me maw.” I’ve decided sleep will come for me once he boards the bus to preschool in the morning.

And as  I ruminate about all the changes in the past year for him, I often wonder what happened? Have all the seizures he has had, accompanied by medications known to cause aggressive behaviors and irritability caused this drastic change in my little buddy? Is it the medication he is prescribed for the aggressiveness with the autism? Is it a combination of the medications? But which is worse, having multiple seizures often or living with the behaviors? I have no answers and the specialists don’t seem to know either.

I’m considering everything and planning on going back to Essential Oil use to help relax and calm him down. It worked when he was younger, maybe that is a missing link. I know there are supplements that have been used to help and maybe it’s just possible that is what he is missing.  The developmental pediatrician and his neurologist ask if I can videotape his behavior, but when you are the target of the behavior, grabbing your smartphone and turning on video doesn’t occur to me. Keeping him safe and others safe is my first priority.

It has been recommended to talk to an ABA (Applied Behavior Analysis) therapist and see if that will help. I didn’t want to face that fact. But now, I must. We have to for him. Not knowing if his insurance will help with the cost or if we have to cut more corners than we have to pay for it, one more stress to be strong for. I do know, as tears stream down my face, I will do as much as I possibly can to help him. Loving him is the easy part. Knowing what to do next, and figuring everything out by trial and error is the worst. For him, as well as us.

I sit and wonder daily how difficult it must be that the only way that he can cope is to exhibit the behaviors he has. I wonder if the noise, lack of noise, the lights on and off, what is it that makes turn his world and our’s upside down? Can we reach him? I have faith and belief that God would not have let him come this far, only to lose it all and have to start over again.

Two years ago, there were two words. Very little interaction with others and the playtime was limited to large blocks his tiny hands could hold. His vocabulary has increased. He does engage with others, he can hold your gaze for more than a mere second, but the joy of playing, it’s lost. If he can’t throw a toy, he has no desire to play with it.

A  year ago, he was flourishing in his preschool class. Following a visual schedule, completing tasks, using listening skills and then midway through the year, it all changed. Once he started having his seizures and had to go on medications, he changed or they changed him.

And now, I look for glimpses of that little boy that laughed and giggled, would jump and spin for the pure joy of doing it. I miss him terribly.

My good friend asked if I know what causes all this. I don’t. I know that he lives every day with many Neurological disorders and maybe right now he is doing the best he can. I remind myself that Autism Spectrum Disorder has many challenges. I’m learning that Attention Deficit Hyperactivity Disorder isn’t just about focus, there are many symptoms I never knew were linked to ADHD. His Sensory Processing Disorder seems heightened more than ever and although his tonic-clonic (formerly grand mal) seizures are held at bay by the AED’s (Anti-Epileptic Drugs) he still has absence seizures, and as much as I would love to say he is just daydreaming as suggested by his Neurologist, I am not sure T even knows what daydreaming is or what it means. He’s 4 with a language disorder.

The one and the only area that his language is truly understood is when he talks to you about vacuum cleaners. That is what he fixates on. He has had toy ones, they don’t last very long. He’s rough on them. Two “real” vacuums in our home have succumbed to his mighty strength. He sweeps for a short period and then while pretending, he picks this heavy appliance up as if it was a feather and tosses it a few feet from him. And when he starts to do that, it is put away. He clings to it and has to be pried away from it kicking and screaming, “my sweep”.  Of all the things that he could fixate on, that was the farthest thing from my mind.

I’ve been silent about this. Not wanting to face that we have to find a way to help him. We have to teach him that the way he reacts and acts is not the best way for him. And we have to learn how to do that in his world. Because in our world, we are lost, too.

Lord Jesus, you know the struggles we are facing. Please help T and help us help him. We know how blessed we are to have him with us. We thank you for giving us the gift of this young child and trusting us to guide him. Guide us. Lead us. We want to see him bloom in only ways you know he can. Forgive us when we become frustrated and upset. Remind us that he too is frustrated. Thank you, God. In Your Name Jesus. Amen.

James 1:2-4 New Living Translation (NLT)

2 Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy. 3 For you know that when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

May you know how much Jesus Loves You~right at this moment~as you are!

#HopeAlwaysHaveFaith

Until next time~blessings, Carlene

 

 

 

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Undefined Chaos

I miss my laptop. I know its just an electronic device, but as someone that loves to write, and share my thoughts, I’ve come to realize how dependent I had become on that somewhat portable device. Yes, I can use my cell phone, as I am now but its difficult when the hard drive on your computer has all your reference material, media and other information you’ve saved that you may need. My memory on my phone obviously cannot hold as much. In the grand scheme of life though, it is very trivial to many problems others face.

I can use my husband’s computer but only if Tyson is sleeping because there are too many “cool” things he can get into in that space. And let’s face it, if you parent or care for a child on the autism spectrum when they rest, you either rest too or you clean and do things that need done that you can’t accomplish while they are awake.

This week has been a challenge. The local school system has been on Spring Break and the thought of getting any kind of break has been just that – a thought.

Tyson and I have been passing a cold back and forth between each other and I am so ready for it to be gone. When feeling under the weather, cleaning really becomes a chore.

Its almost 2a.m. here and he is wide awake! He’s currently taking my Crayola markers and stacking them together and showing me how high he can stack them. And exclaiming, “really tall”. I’ve tried several times unsuccessfully to remove them and put them up but he will have no part of it. I use them to color with, he uses them to line up and stack. He doesn’t want to go to bed, but I sense he’s wearing down. He stops what he’s doing and comes over to me and wants my hair down out of the ponytail so he can play with my hair. We have speech therapy in less than 8 hours and he’s not even asleep yet! His sleep schedule is getting worse by the day. Something has to give. Its not good for either one of us to have little sleep but it really isn’t good for him because it can bring on a seizure if he’s overly tired.

He’s become more aggressive than he used to be. Headbutting and hitting in the face and holding him tight doesn’t work as well as it used to. I’m praying his Developmental Pediatrician will have some answers or solutions so he can get back on a better schedule than we’ve had this week. For both of us.

He can’t be put to bed in a separate room to sleep in because the minute you put him in the bed, he’s messing with everything, pulling clothes out of dressers attempting to unplug lamps.etc., climbing and jumping,  removing hot bulbs from lamps, opening lotion bottles dumping them..and the lists goes on. If you lay with him, you become the object he jumps on, climbs on, pulls your hair and again no sleep.

The music is playing in the background now, soothing in hopes he will start to unwind and want to sleep. The only light in the room is the glow from this tiny screen. He’s still full steam ahead.

I know I’m rambling and I apologize. He’s my 24 hour job. I love him. I wouldn’t even want to imagine my life without him, but he is ALWAYS busy. My house always looks like there have been a multitude of children here, while there has only been one. Dishes and laundry get done on a regular basis when my husband is home because Ty knows how to climb out of his five point harness chair. Or done in the middle of the night when everyone is asleep and I should be sleeping.

Every child is a gift from above. I know God never gives us more than we can bear because in those times where we feel all alone and helpless, those are the times He wants us to allow Him in. God wants us, all of us. He is our strength our joy and our peace. Jesus gets me through all the craziness and chaos. Even now. Even when my eyes are heavy and sleep is at hand and I have a 3 1/2 old crying out “no bedtime.”

I’m learning to embrace all these moments. To savor the mess and all that comes with it and to realize His grace is enough. In every moment.

May you know how much Jesus loves you. In every messy moment of this thing called life. Cry out to Him. He is always listening.

Blessings from me and Ty.c046dec741cdaaaeb6e5bb14f47afc91

 

 

 

 

Gift of Love

James 1:17 New International Version (NIV)
17 Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.

 

As I sit here this morning, watching the snow fall outside my window, it reminds me of how the Father covers us.  When we come to know Jesus Christ and accept Him as our Lord and Savior, he covers us by the sacrifice of his blood on the cross. And we are made pure in his sight, white as snow.

I’ve always said I don’t like snow and I have to confess I love watching it fall outside my window, I simply don’t care for the cold temperatures associated with falling precipitation.  Earlier, gazing out my window, I saw a muddied yard, with brown, lifeless trees and now I see white all around, and everything appears pristine and fresh.

2 Corinthians 5:17 New Living Translation (NLT)
17 This means that anyone who belongs to Christ has become a new person. The old life is gone; a new life has begun!

No matter who you were or how your life was before Jesus, you are given a new life, one held together with love, mercy, and grace. Your sins are covered by the blood of the Lamb, similar to how God covers the muddled, messy ground with freshly fallen snow.

There is not one of us that can claim to be Holy or Righteous without the Cross. Jesus bore the sins of the world so we could be reconciled to God. When sin entered the garden, it separated us from God. With Jesus’ death on the cross, it gives us atonement for our sins, once and for all. When we come to Jesus, repent of our sins, and choose to follow Him, we are considered children of God. Jesus is the bridge that brings us back to a Father that sin keeps us from.  Living a life as a Christian isn’t easy.  He died for us so we could live life abundantly.  He didn’t promise there wouldn’t be problems, but in life and in death, he showed us how to live and overcome hate.

love hearts

Live your life with purpose, choose Joy that only God can give. Accept peace and hope as the things we seek and cling to. Live passionately, love extravagantly, Choose life. We are only given one chance to get this right. Choose to love others, help those that need help, pray and expect miracles. Leave a legacy.

May you know how much Jesus loves you~right where you are, right now!

Blessings~Hope Always, Have Faith

Carlene

 

Reflections

As I sit here thinking back on the last several weeks, I am reminded how precious our time is here on earth and how important it is to live our lives to the fullest every single moment we are given and whatever we choose to do, we do it with unbridled passion. Near the beginning of the month, a lifelong friend, that had so courageously battled cancer and never given up hope that she would survive, was killed by her husband.  

She cherished life and her children/grandchildren. She loved her friends and always had something positive to say, no matter how bleak things were for her. She was always smiling, for as long as I can remember. Always smiling on the outside. Always a kind word. And the last time I had spoken to her weeks before her death, she was still hopeful and joyful, even though, as it turns out her life was less than joyful. She chose to live life in such a manner to leave a legacy of loving others with kindness and compassion. She will never be forgotten. She touched so many lives while she was here.  

After the news of her death and paying respects, joining in the sorrow of the loss that many of us feel and celebrating who she was, I realized that none of us know the time or day God will call us home. So, with the time I have, I better us it wisely.`

Prior to the first of the year, I had prayed and planned and envisioned what 2018 was going to look like, what I was going to strive for and what my theme for this new year would look like. My theme is the same: Focus on God, Be Intentional and Savor the Moments of Life. My visions have shifted.

I realized that as I attempted to build an online business with Plexus Worldwide as an Independent Ambassador, I loved connecting with others and offering them hope, through health and wellness supplements, I did not like the “business” side of it. No matter how many customers I gained or other people that signed up to do the same, that is not where my heart lies. I could go on living that lie, or I could get real and realized that God has a different plan for me. When doing something that you are not 100% all in, no matter how much you try to convince yourself, there will always be feelings of resentment or maybe resentment isn’t the right word, but feeling like if I continued on that path, my family and I were suffering, emotionally.  I just knew that it was preventing me from being the person I was created to be.  I will always have GREAT things to say and share about Plexus and the products they offer, and I will continue to use them because they have helped me to feel so much better, but this is not where my joy comes from.

Jesus is my joy! Reading the Word, learning Truth, sharing the Good News that is where I find my joy, that is where I feel fulfilled. Hope comes in many forms and loving others comes naturally to me. I always look for the positive in any situation. I choose to show grace and mercy as much as humanly possible. I have many flaws, as do others, but I look for the good.  There is so much evil in this world, so much hatred and greed and people that are all about themselves, I don’t care to watch the news anymore. That’s all you see most of the time. It’s sad, but the one thing that never ever changes is Jesus. He is the same today, as he was 2000+ years ago, and he will be the same 2000 years from now. He is the one constant in my life. He is my Lord and Savior and He is my friend. 

He has seen me go through so much in my lifetime, and He still loves me. He weeps when I weep and he rejoices when I rejoice. My life has been far from perfect, there have been many choices I have made that have caused others to hurt, emotionally and as he works with me to realize that there is nothing I can do to be perfect this side of Heaven, he has taught me that forgiveness and love can cover over a multitude of anger, hate, evil and despair. When the demands of being a wife, mother, sister, grandmother, and friend become overwhelming, when there isn’t enough time in the day to accomplish all you hope to or need to, when the expenses outweigh the income, He always provides a way for things to work out. When you feel like you are in a tunnel and the walls are closing in, He is the One who lights the path and helps me to hold it all together. Days when I feel like screaming or crawling in a hole somewhere, He is with me. He comforts me. He lives within me. He guides me. 

I sit here in the midst of chaos. Toys spewed all over, crumbs left on the floor by a toddler, laundry overflowing that needs to be folded, dishes stacked high waiting to be washed, bills stacked up and I can choose to do two things, I can look at them as blessings in disguise or I can choose to be angry that no one else seems to notice. 

I choose to see everything in my life as blessings.  There are toys because He gave us this gift in the form of an inquisitive young child that wants to know how everything works and why the wheels spin on the toy truck, or loves the idea of the “black” sweeper, even though he can’t handle the noise of it, the crumbs and the dishes piled high mean there is food in our home to nourish our physical bodies, the laundry means we are fortunate enough to have more than one outfit to wear and a washer/dryer to care for those outfits.  The mess all around is contained by these four walls, we have a home to live in and a roof over our heads.  As I sit here typing this, I am watching my grandson, shred a piece of paper all over the floor, knowing that is just one more thing on my ever-growing list, but my life without him would be so lackluster and boring.

Every single child is a gift and a blessing. Some require more care than others. Extra care that you aren’t sure what that looks like or if it will ever happen where less one on one care will happen, but you embrace them. You love them. Living with someone on the Autism Spectrum is overwhelming, rewarding, crazy, chaotic and sometimes very stressful. Being able to cry out to Jesus and sit with Him in the midst of the chaos, keeps me sane. I think.

If you are living a life that is not what you want, you do have the power within yourself to make the changes.  It may not be easy, it might be the hardest thing you have ever done, but you are worth it.

May you know that Jesus Loves You~right where you are.

Blessings~Carlene

Rest in the arms of Jesus Sam! I love you and miss you deeply. (Samantha Howard Freels, July 7, 1965 – January 12, 2018)

Samantha

 

 

Beyond Blessed

Today God reminded me how very blessed I am. My good friend, Julia popped by to brighten my life, not just my day, but so much more.

Since I became disabled and unable to get on my knees or squat down, I have not been able to plant my flowers.  My husband and I used to plan our flower beds and containers, go to the local home improvement store and purchase potting soil, plants, flowers, etc. and each year create beauty outside of our home. Then after the weeding and planting and mulching, we could sit on our front porch and enjoy the beauty of our hard work. Those times brought such joy to my life.

Three years ago, when I did my final plantings, I laid flat on my stomach in the yard on a cardboard box and planted the seeds and starts of blooms. It took a long time, but I was so determined to do it. I knew that would be the last time I would be able to do it. Joint and bone wear had taken its toll.

Now, Julia amazes me because she is always creating beauty in her own flower beds with a mixture of plants, herbs, flowers, grasses, etc. When the weather is nice enough to be out digging in the dirt, that’s where you will find her. She has seed starter plants and starters from other plants all over her kitchen and outside on her patio. It’s like walking into a home garden center. And she isn’t afraid to get dirty or remove hedges that were in her way or change the design of her garden if she doesn’t like it when she’s done.

Today, she appeared at my home with a load of mulch and composted soil, empty planting containers and starts of herbs, flowers, and vegetables and her gardening tools. She knows how much I miss my flower garden. And while she was figuring out where she wanted to plant everything and how to do it, I sat on my walker and we fellowshipped with one another.

Because she has such a huge heart, full of love, she allowed Tyson to help her plant the flowers and dig in the dirt. That’s huge for a three-year-old with sensory issues. He cried when she had to pack up her tools to go home. But she promised she would be back, tomorrow with more plants.

As you can see, she is a very beautiful friend, outwardly as well as inwardly. She loves with all she is. We have been friends for over 11 years and we have laughed and cried together and encouraged one another when we felt at our lowest.Julia

 

1 Samuel 16:7New Living Translation (NLT)

7 But the Lord said to Samuel, “Don’t judge by his appearance or height, for I have rejected him. The Lord doesn’t see things the way you see them. People judge by outward appearance, but the Lord looks at the heart.”

Thank you Father God for reminding me that blessings come in all shapes and sizes, and in all forms. The best blessing that any of us can have in our lives are our friends and family.

Thank you, Julia, for the love you have shown me today! It will not be forgotten.

May you know how much Jesus Loves You!#HopeAlways#HaveFaith

Blessings to you!