In the Midst of it All

This week has been emotionally exhausting. For several years now, as we live with autism being part of our everyday lives and trek through the ups and downs, I have been sharing how tantrums are not the same as meltdowns. This week has taught me that no matter how much I try to share a glimpse of what a meltdown is or isn’t, there is no way that you can possibly teach others what one is unless they have personally witnessed or experienced it themselves.

raging fire

I can educate others on the differences. I can post pictures on the autism page I manage on Facebook. I can tell others what we go through, but until you weather the storm and watch them unfold, there just isn’t a way to truly get it. I never did. I thought I understood. I thought I knew even after reading different articles, posts from others going through the same thing, hearing about them, but there is no way for anyone to grasp the degree of how emotionally and physically exhausting they are unless you experience them firsthand. And truly, I pray daily that I never have to go through one again.

I will. We will. It’s inevitable. I know as Tyson gets older and learns a coping mechanism and self-regulating strategies, along with all of us learning what the triggers are and techniques to help him get through them, they may lessen and maybe even stop.

Today we are on our third or fourth day in a row of multiple meltdowns per day. The one commonality is that he is happy and playing and wants to do something and he is told, “no.”  Telling him, “no, not right now” or “no, you can’t have that (fill in the blank, it could be a toy, a snack, whatever it is at the moment)” and it starts out as a simple child tantrum.  He becomes angry and cries. And we ignore him, hoping he will settle down and go on, realizing that just because he didn’t get what he wanted, crying and throwing himself on the floor isn’t going to make it so. But for him, once he starts crying, it sets off something inside of him where he becomes very intense and inconsolable. No amount of trying to hold him close and hug him or redirect works.  In these moments, he is lost within himself. As the meltdown increases, his behavior goes from simply crying out, not getting his way to hitting, throwing himself on the floor, running and banging into the walls, furniture, others, trying to bite you anywhere he can to inflict pain, pain that he is feeling, I presume.  And the only way to get him to help him calm down is to forcibly hold him and hug him tightly, but beware, because then he is closer to you and the headbutting and biting are easier to do.

When he was smaller, holding on to him as he stiffens his body or tried to wriggle out of your hold on him, was harder for him to do; now as he as grown (3 1/2 feet tall and 50 pounds), he is a force to be reckoned with.  He has always had superhuman strength, but when he is in the midst of a meltdown, it is quantified. I joke with others that I don’t need to go to the gym for strength endurance because I have my own little personal trainer that helps me with that.  We can’t leave him to flail around on the floor because he doesn’t care in those moments if he hurts himself or hurls items at us. And that is not acceptable. We also know that yelling at him to stop is futile. By this time, it’s not that he isn’t listening to us, he’s past that point and isn’t hearing us.

Jesus gives me the strength to hold onto him, usually facing away from me, because it’s harder for him to aim his head toward mine. As I become the human papoose to restrain him until he starts to wear down, I silently weep, because I don’t how many minutes it will take to reach him. When he finally starts to relax and cries out for me or his mommy or papaw to hold him, we know he is calming down. He is finally back with us.

He can’t be put in timeout, although this has been suggested because he does not sit still for any reason. So, earlier today I put myself in timeout. As he sat with his mommy, after melting for 30 minutes, I withdrew from the room, just around the corner, locked the safety gate, and sat on the stair steps out of his view and I wept. I prayed through my tears.

I know Tyson is a gift from God. He is truly a blessing in our lives. Even in the meltdowns and they have been more than I care to admit lately. I know that there is a reason for everything that happens in our lives. And I also know that being an autism family, Tyson doesn’t need fixing. He isn’t broken. His brain is wired differently than ours and we expect so much from him to live in our world and conform to the world’s standards of how he should act and behave. I know that he sees things differently and I love that about him, he has taught me so many joys that I take for granted. I just always expect the Sun and Moon to be shining in the sky at the right time of day, but each time he sees them, his heart is full of gratitude that God gives him the gift each day.

Zechariah 13:9 New Living Translation (NLT)
9 I will bring that group through the fire
and make them pure.
I will refine them like silver
and purify them like gold.
They will call on my name,
and I will answer them.
I will say, ‘These are my people,’
and they will say, ‘The Lord is our God.’”

As we walk through his meltdowns, I liken it to the firestorms of life that God allows us to go through so He can refine and purify us into the people He created us to be. Yes, they are painful. No, they are not pleasant for any of us. But they are necessary. Everything each of us experiences during the midst of these teaches us to be a little more compassionate, a lot more understanding and out of the ashes, love for one another rises.

May you know how much Jesus Loves You~right now~in this moment! Jesus can turn any mess into a message of hope. #HopeAlwaysHaveFaith

Blessings to all~Carlene

 

 

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How Did I Get Here?

The past few weeks, I have run the gamut of emotions. Some happy, some sad, mad and angry and some so mixed up I am not sure how to process them, so I sit and I read and I pray. I turn to the Father and seek His guidance. I converse with Godly counsel and friends that love the Lord as much as I do and ask for prayers and wisdom. Doing my best to discern what is from Jesus and what isn’t.

I grew up knowing Jesus. There was never a time in my life I didn’t know about Him or forgiveness, grace, mercy, and unconditional love. And even in my darkest moments, when all hope seemed lost, He was there. He has always been right beside me, His Holy Spirit dwells within me. And just so I don’t sound all high and mighty here, and keeping it real, sometimes knowing all that, I have still tried to figure stuff out on my own, and believe words spoken over me or people’s opinions that belittle me and not stand up for what I know to be TRUTH.  It’s easy to allow it to happen if you don’t remember WHOSE you are.

Life isn’t easy and Jesus never promised that it would be. But He did promise that He would always be with us. He would be our strength because His strength comes through in our times of weakness.

Philippians 4:13 New Living Translation (NLT)
13 For I can do everything through Christ,[a] who gives me strength.

In the past several months, I have had many moments where I just want to chuck in the towel and give up. And I hate that feeling.  Sleeping was easy. No problems for me to deal with, no solutions to come up with, no hurt feelings to soothe, just sleep. And that would be a pretty good plan if life didn’t keep moving on and every task for the day was done, but in my world, the real world, sleeping all day is not a healthy thing to do unless I’ve had a flare up with my fibromyalgia, or I am sick or I am so exhausted I just can’t take one more step. Meals need to be made, laundry needs to be done, errands need to be taken care of, family needs to be loved and appointments need to be kept, therapies to go to and the list goes on.

I am a positive person. No matter how bleak things appear or seem, I can always find a bright spot, a sliver of hope. Nothing can be as bad as it seems, and even when it is really as bad as it seems, I choose to trust in Jesus and God and know on faith that God will take the bad, tragic and sorrowful times of our lives and use them for good.  I’ve experienced it. And that’s a promise in His Word (Romans 8:28)

I have difficulty encouraging myself. Many times I just want to let someone else carry the load. I want a break. I need a break. I never imagined at 53, I would be where I am right now and yes, it could be a lot worse than what it is. When we are struggling in any given moment, it seems like it could be the worst low we have ever encountered. And crawling out of the deep dark hole isn’t as easy as it seems. In moments like this, I usually have to shift my perspective, and at times, I don’t want to. I’m tired. Emotionally, more than physically.

I hadn’t planned on being retired and spending most of my waking moments with only the people I live with. I love them, they are my family, but I am a people person. I love having conversations on a variety of topics, I love being challenged to do things I didn’t think possible.

This video from Mercy Me helps me get through some of my darkest moments. It reminds me where my Hope lies.

I didn’t realize that the extreme pain in my lower back would stop me from being able to live the life I so desperately want. And I am not talking about anything exciting or adventurous either. Simply to be able to go to the store, or take a walk more than 10 feet and have to stop and sit. It’s horrible having this continual pain. I hate thinking about it and living with it. I want to lose the burdensome weight I carry on my frame, but to do that I have to be able to exercise, along with eating right,  and while chair exercises are a start, they don’t do much for losing weight. Surgery to repair the damage from the degenerative disc disease in my lumbar spine area is not option until such time as I lose a significant amount of weight and my circulatory problems improve. And there have been many loving suggestions from family and friends. I did consider bariatric weight loss surgery, but that would require at least 5 to 6 weeks of recovery with rest and I can’t even get a few days of uninterrupted rest let alone 5 to 6 weeks.

When I injured my knee and tore the meniscus I was told surgery was not an option because of my health and I felt in such a conundrum because if it was too high risk for surgery to repair my knee, why was it okay to have surgery for serious weight loss? It was safe for one but not the other??

Water exercise is great if you have a pool. But if you have to go to a pool, and pay for use, that can be quite costly living on a fixed income that is stretched as far as it will go. Feed your family, pay your bills or go exercise in a pool of water. It usually isn’t a hard choice to make. We have to have electricity, hot water, and food. We have to have a roof over our heads and we have to be able to take care of a little guy that can’t care for himself.

It’s the days when the pain is hard and other’s aren’t feeling well either, those are the most difficult to get through. But, I get through them. So thankful for Jesus. HE is the reason I have made it this far. I am still walking, slower than a snail, but I am walking. I think of the many things I have to be grateful for. I put on some worship and praise tunes, I make a list of who and what I am grateful for and yes, sometimes I sleep.  And ever so slowly, I find my way back to hope, encouragement, and realize everything I go through is just part of my journey.  What I deal with personally and what I go through, helps me to see life from different perspectives. I have been on both sides of the pain.  The times when my pain was manageable and the times when it nearly knocks me out of the game. I work through the depression, talking it out with loved ones, trusted confidants and Jesus.

Currently, I do not take medications for depression. I did at one time when the pain was so great every single day that I needed it. There may come a time when I will have to again, and if that time comes, I will do what I need to for me.

I think of the times Jesus was depressed. I think of the days before His crucifixion when He knew the pain He would endure and how sad and sorrowful he must have been. I think of Him being nailed to a cross and being suspended on that cross and I realize that no amount of pain I go through will ever compare to His. That image in my mind helps me. It helps me remember that my time on earth is temporary. This body I live in is temporary. One day I will have no more pain. I will cry no more tears of sadness, only tears of joy. Until that time comes though, I will minister to others the only way I know how and I will listen, comfort, share my thoughts and opinions and love the life I have. Part of growing in the Lord and living by faith is trusting in what we can’t see and believe in what Jesus has promised.

May you know how much Jesus Loves You~right now in this moment~wherever you are. Jesus can turn any mess into a message of hope! #HopeAlwaysHaveFaith

Blessings my friends~Carlene

 

 

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

 

 

 

Discord or Harmony? Which do you choose?

I appeal to you, dear brothers and sisters, by the authority of our Lord Jesus Christ, to live in harmony with each other. Let there be no divisions in the church. Rather, be of one mind, united in thought and purpose.

1 Corinthians 1:10 NLT

 

This was my daily verse that appeared on my computer screen this morning and it made me realize that I cannot hold onto anger or irritation because that is not who God has called me to be. How easy it is though to let simple irritations or perceived wrongdoings take hold if we let them. Until I read that verse, I had mulled over what I had found and shared that information with my husband hoping he would be just as upset. And there at that moment, discord happened.  I knew better. I know better, but I was angry.

I do my utmost to be loving in all circumstances and show mercy and grace to all; some days I fail miserably. Forgiving the offense is hard today. Maybe because it’s a repeated offense of thinking of oneself and no one else or the circumstances at hand. However, I know that if I do not forgive, the enemy wins. And if I do not give it to the Lord and ask for forgiveness for my thoughts, words, and actions, I am no better than the offender.

candle burning
Photo by Steve Johnson on Pexels.com

So I will forgive, not because people think it may be the right thing to do, but because that is what Jesus does for me daily. I will forgive because my perceptions are totally different and I can’t let this one offense rule over my thoughts and actions.  Discourse in the church begins in our hearts. Different ideas, perceived notions, beliefs with an unwillingness to shift or change how we do life and how we perceive what other’s think or believe can leave you feeling pretty agitated. We have to be willing, as a member of the body of believers (the church) that everyone hears from God in different ways and every person has different parts of ministry in their lives. We have to be willing to stand up for injustice, love others~even if they aren’t very lovable and be willing to open our hearts and minds to the people God places in our path.

Each one of us is created in the image of God. I believe He did that so that we might see a glimpse of how diverse and omnipotent He is. Remembering that  man looks at the outward appearance and God looks inwardly at our hearts, pricked mine today because it reminded me that my heart wasn’t in a very good place and for my heart to show the Love of Jesus to  others, it has to be full of love, peace, patience, gentleness and mercy- not anger, resentment and bitterness.

I think it is simply awesome that God knows what each of us needs to read or hear in order to put our hearts in the right place, even though all of us have very different circumstances going on all at the same time.  The fact that any of us could attend a church meeting, hear the same sermon and each receives the message to help us in our daily walk, shows us how Sovereign and Omnipresent our Lord and Savior Jesus Christ is. He knows what we need, and He is always listening and ready to guide us. I am so thankful for that.

John 10:10 New Living Translation (NLT)
10 The thief’s purpose is to steal and kill and destroy. My purpose is to give them a rich and satisfying life.

May you know how much Jesus Loves You~right here, right now! #HopeAlwaysHaveFaith

Blessings to all~Carlene