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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If You Could Do Anything, What would it Be?

The other night in a women’s Bible Study group, the question was posed ” If you could do anything you wanted, financially there was no limit and God had paved the way and gone before you, what would you do??

Serve only the Lord your God and fear him alone. Obey his commands, listen to his voice, and cling to him.- Deuteronomy 13:4 NLT

There were a lot of great answers and I selfishly said, I would want to go away and take a break! And at that moment, I meant it.

But I have been giving that question a lot of thought since that night because we all have hopes and dreams, things that we think are way too big or too impossible and I realize that with God, NOTHING is impossible.

27 And Jesus, looking upon them, said, “With men it is impossible, but not with God; for with God all things are possible.” – Mark 10:27 21st Century King James Version (KJ21)

I believe that sometime’s we get so caught up in the day to day busyness of our lives, no matter what that busyness looks like and we store away our hopes and dreams for ‘when the time is right’ or ‘when I have enough money’ or ‘when our kids are grown’ or ‘once I get that promotion’ and I know that is not how God intended for us to live.  Always thinking that we have to wait until everything is perfect before we try something new, fulfill a lifelong dream, reach for an unreachable desire in our hearts.

I love ministering to others by sharing my story, here, and in person of how my life has been touched by Jesus Christ. I love encouraging others and sharing what it is like to walk by faith and not by sight. My heart is full when friends ask me to pray for them or a situation or share the Word with them.

Follow Your Heart

God will use anyone how He chooses.  The fact is we have to be willing and we have to be obedient to His call. Many people hear from the Lord in a number of ways, and those ways are just as different as there are people to hear Him. I feel a nudge in my spirit to share a message or word He gives. And sometime’s I understand what I am to do and I don’t always obey because fear sets in.  Fear is a tool of the enemy.  The devil will use any tool in his power to stop me in my tracks. Doubt may creep in and I worry more about how I will look, and what people will think, more than caring about The One that nudges me to go and do His work. Sometimes it doesn’t have to make any sense to me.  But I still need to do it.  Walking in obedience to the Lord should be the easiest thing for any of us to do, but many times the chaos of our lives shuts out His voice.  Until we think we need Him and then we wonder why we can’t hear Him. He is always with us and always waiting to connect with us through every part of our lives and always listening.

I still don’t have a solid answer for what would I do if money was no object and God had blessed my vision for what my lifelong dream would be, so I will be still in the waiting and seek his guidance. I do have thoughts, but nothing concrete. I can say, without a doubt it would be geared toward people that have special needs due to a medical/disability diagnosis, but exactly what they type of ministry would it be, I don’t have all the details yet, just a burning fire within me to help these groups of people and it really isn’t any wonder since I love and care for someone that is very special to me and has very special needs.

I would like to encourage you to pursue your dreams. Find something you love and go do it! Because God will give you all the tools you need to fulfill your wildest and crazy dreams; He places those desires in your heart.  It will take grit, determination, and perseverance and there may be times you think you got it all wrong, but this is where your faith comes in.  Faith is believing even when you can’t see!

I do know from my own point of view, I’ve had a tugging at my heart to do something for Special Needs Individuals, that isn’t out there yet-I just have no idea what it is at the moment. And more than just the little guy in our lives that requires so much.

I learned a long time ago, that if you are doing what you love, you will excel at it; if you are working just to earn a paycheck and you hate it; it’s not where you are supposed to land forever.  It may just be a stopping point along your path, to help you grow in an area that needs growth.  God doesn’t have us anywhere to waste our time.  There is always a purpose. And when the time is right, God will have you move and go.  Don’t fear the going. Trust in your Creator.  He knows everything about you.  Everything.

Ministry-serving others can happen anywhere. In our homes, the grocery store, a foreign land, in our day to day with others. We are called to spread the Good News of Jesus Christ and His story.

May you know how much Jesus Loves You ~ right where you are ~ in every moment of your lives! #HopeAlwaysHaveFaith

Blessings ~ Carlene

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

 

 

My Catherine the Great

Proverbs 31:11-31 English Standard Version (ESV)
11 The heart of her husband trusts in her,
and he will have no lack of gain.
12 She does him good, and not harm,
all the days of her life.
13 She seeks wool and flax,
and works with willing hands.
14 She is like the ships of the merchant;
she brings her food from afar.
15 She rises while it is yet night
and provides food for her household
and portions for her maidens.
16 She considers a field and buys it;
with the fruit of her hands she plants a vineyard.
17 She dresses herself[a] with strength
and makes her arms strong.
18 She perceives that her merchandise is profitable.
Her lamp does not go out at night.
19 She puts her hands to the distaff,
and her hands hold the spindle.
20 She opens her hand to the poor
and reaches out her hands to the needy.
21 She is not afraid of snow for her household,
for all her household are clothed in scarlet.[b]
22 She makes bed coverings for herself;
her clothing is fine linen and purple.
23 Her husband is known in the gates
when he sits among the elders of the land.
24 She makes linen garments and sells them;
she delivers sashes to the merchant.
25 Strength and dignity are her clothing,
and she laughs at the time to come.
26 She opens her mouth with wisdom,
and the teaching of kindness is on her tongue.
27 She looks well to the ways of her household
and does not eat the bread of idleness.
28 Her children rise up and call her blessed;
her husband also, and he praises her:
29 “Many women have done excellently,
but you surpass them all.”
30 Charm is deceitful, and beauty is vain,
but a woman who fears the Lord is to be praised.
31 Give her of the fruit of her hands,
and let her works praise her in the gates

She is beautiful inside and out.

She is loving and caring.

She is kind and compassionate.

She is fiercely protective of those she loves and cares about.

She is full of passion for what she believes in and always stands up for her beliefs.

She is strong and does not easily back down.

She is determined and does not quit, that is not an option and she will find her way around any obstacle in her path.

She is an artist with a flair for repurposing items that people see no value in. She brings old things back to life.

She is a great listener and works toward a solution, rather than complain about a problem.

She is an amazing mom of three college graduates who are changing the world around them.

She is a wife, a mom,  an aunt, a sister, and a daughter.

She is an emergency 911 dispatcher who works more hours than should be humanly possible. The first voice you might hear, full of calm and reserve as she manages 500 things at once.

She is a former school bus driver that loved her riders as if they were her own children.

She is an animal lover and considers them family, not just pets.

She never has enough time to take care of herself, she is always caring for others and burning the candle at both ends.

She is wise beyond her years and has seen many things most people will never have to see.

She is faithful and will celebrate 29 years of marriage this month to her loving husband.

She was a cheerleading mom and advisor when her daughter was school age.

She loves her community and has a great tribe that she holds dear and close to her heart.

But one of the best things she is…..she is my sister. And I love her with all my heart and soul. Today is her birthday. I don’t see her as often as I would like, but I hope she knows how very proud I am of her, her accomplishments, which are too many to mention. I know she is always a phone call away. Our family is very blessed indeed!

Cathy

Catherine, I love you sis and I pray that today your birthday will be all you hope for and more! You deserve it! Much love~Carlene

 

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

Blessings to all!

 

 

 

 

Rodney

Earlier tonight, we said our final goodbyes to our beloved family member, Rodney.

We adopted Rodney when he was 4 years old, maybe even 5-the shelter really couldn’t give us a definitive age. He had been at two previous shelters and if he had not found his forever home with us, his days were numbered.

For the past 7 years, he had met us at the door with a wag of his tail and excitement as he ran circles around us, excited we were back home with him.

He was always underfoot, wanting to be as close to us as possible. The last years of his life, he always had a cone on, because of one “hot spot” that never healed. We attempted many times allowing him to go without the cone, but we never could get his problem fixed. A constant discomfort for him. He adapted. He loved belly rubs and being brushed and then this summer, he started to decline in health. He had multiple tumors, inoperable. Seizures throughout the night and fleas that never left. For the last few days, we wept not knowing how long his suffering would go on. We knew his time here on earth was coming to end. He refused to eat or drink. He stopped wanting to go outside to take care of his business and he no longer had the strength to stand on his own. Lifting his head was almost impossible. Thanks to three of our closest friends, he suffers no more. He is resting at Rainbow Bridge now and some day we will see him again and we look forward to running to greet him. Rubbing his belly and seeing all the pain gone from his body. Until then, he will be waiting with our beloved Sadie who made the journey before him.

We love you Rodney; our hearts and lives will be so different now, but we thank you for allowing us to be part of your life here on earth. Rest well buddy, rest well..

 

Your sun will never set again, and your moon will wane no more; the Lord will be your everlasting light, and your days of sorrow will end.
Isaiah 60:20 NIV

May you know how much Jesus Loves You~right where you are in this moment.

Jesus can turn any mess into a message.#HopeAlwaysHaveFaith

Blessings~Carlene

 

Drowning

Psalm 143:6-8 New International Version (NIV)
6 I spread out my hands to you;
I thirst for you like a parched land.[a]

7 Answer me quickly, Lord;
my spirit fails.
Do not hide your face from me
or I will be like those who go down to the pit.
8 Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to You, I entrust my life.

 

HelpMe

 

I am a strong person. I am told that all the time by my friends and family; even people I just met and have yet to form good relationships with. But what no one seems to realize is that I am strong, only because I allow Jesus to be my strength. My strength fails in comparison to that of Jesus.

I believe that all of us have an inner strength we are gifted through the Holy Spirit and it takes patience and requires a trust to tap into that inner strength.  It doesn’t come unless it is put to the test.  I know God will give me everything I need to succeed in every task I am given.  I know He will not set me up to fail. He is good. All the time.

Just as we can become physically exhausted and need rest and rejuvenation, I know my spirit can become emotionally and mentally exhausted and I also need to take time to rest and rejuvenate.  That type of rest and rejuvenation is different for everyone.  And I also know, for me personally, if I do not take the necessary time to rest and rejuvenate my spirit, I feel as if I am drowning and my Lifeguard walks on water, how insane is that? For me to feel as if I am drowning.

I am a “people” person. I am a nurturer, and if I must admit it, I want to be a “fixer” or “people pleaser”. Not in the sense that I have any skill or talent that I can fix anything because Jesus is the only one that changes the hearts and minds of people. I can only make suggestions based on my personal experience and observation.  I am much like my father, who loved being around other people and never met a stranger. I guess that qualifies me as an extrovert, personality wise. Striking up conversations with people, getting to know them, gaining a personal connection makes me come alive.

Knowing all of that, this morning hit me so hard, because as our sweet grandson wanted me to listen to him, about just one more vacuum and how cool they are, I became very frustrated and a little bit annoyed. I could care less, if I hear just one more thing about vacuums, truth be told.  I know I will hear about them though.  He can’t get enough, ever. And I know he can’t control those thoughts. Our brains are wired so differently. I only wanted to go back to bed and shut the world out for the day. Rest, listen to music and some podcasts, fuel up.

Taking time for myself, shouldn’t make me feel guilty or ashamed that I want some quiet. Some peace. And I shouldn’t have to feel bad if I don’t want to hear about it anymore. The guilt in my heart is from the world. Not God. It’s from the fixer in me, that says, “suck it up” you can make it through today, and tomorrow and the next day.

I wonder why we feel so guilty when we want to spend time with ourselves, no agenda or plan, just be. In the Word, God tells us to “be still and know that I am God”. Being still seems so unnatural now.  I used to love being still and days like today I miss those moments. Explaining that to anyone, usually brings a response of “what’s wrong?” And I want to know why does anything have to be wrong? Some days, everyone needs time to themselves, without having to leave the comfort and haven of their own home.

I feel guilty when I think of just me and my needs. How crazy is that? I know it is a very necessary need. I shouldn’t feel guilty, but I feel like I am letting people down if I am not doing everything considered necessary to keep life on an even keel, but I realized today that if I do not take the time for me, the ship will sink and we will all drown.

No one can be an effective teacher or role model in life if they don’t take time to just be.

So, as hard as it is for me, the person that likes to fix things, today I have to take time for me. Drowning, quitting, giving up these are not options. Resting should be the easiest task I have to do, but it’s so foreign to me, I am not sure what resting even looks like.  I guess I will have to keep working on the resting part.

Matthew 11:28 New International Version (NIV)
28 “Come to me, all you who are weary and burdened, and I will give you rest.

Lord Jesus, here I am. You know how weary I am right now. I claim rest in your name and praise you for being the Savior I need. Everyday. Thank you for taking my burdens and bearing them on the cross. Thank you for giving me life. Please help me find the balance I need to not feel so worn. In Jesus name, Amen.

May you know how much Jesus Loves You! Right where you are at this moment in time.

He is always here for you, always! #HopeAlwaysHaveFaith

Blessings~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