Daily Life Struggles

Proverbs 15:15 The Message (MSG)

15 A miserable heart means a miserable life;
a cheerful heart fills the day with song.

 

With joy in my heart, I still struggle.  Joy comes from the Lord and no one can take that from me. I can choose to live with a joyful heart and know that I will still face many struggles and trials, but still, love and be the person I am because God has placed Joy in my heart or I can choose to live without joy and be miserable always.

Over the weekend, the fibromyalgia flared up and reared its ugly head. The constant pain that never fully leaves, but some days are so rough, that just breathing and moving, make you question if getting out of bed was the right thing to do. And knowing that if you choose to remain in your bed, how many things will face you to take care of once you arise.  Most of us that have fibromyalgia know that sometimes the best we can do for ourselves is to stay in our beds or the comfy places we have carved out in our homes. We do not have the energy to get dressed, shower, or do any extra. Getting up takes every ounce of energy just to be able to spend time with our families, and going anywhere is totally out of the question. That was me on Saturday. I showed up, in my nightgown and I stayed in my nightgown all day. I KNEW I was not going out into the cold for any reason and I saw no point in causing myself more pain to get dressed simply because that was expected of me.

I have dealt with FM for 10 years. And for the past year, it has been manageable. But for the past several months, I have noticed since stopping the natural supplements I was using, my inflammation throughout my body and the pain levels have been increasing again.  I choose to work through my pain in prayer and time with the Lord. Limiting what I do. Staying in more than going out and while dealing with my own health battles, helping our grandson through his.

He has come a long way in the past two years since being diagnosed with Autism Spectrum Disorder. He talks now. He is becoming very independent, but also very demanding. He is four. When he wants something, he wants it now. And even though he asks for something correctly and always says please, he does not understand when he is told no.  He tries again, to word it differently or even smile and say please and sometime’s the answer is still no. I know it must be confusing, because he is being polite, and saying please, but simply does not understand that even if you do everything right, sometime’s the answer will still be no.

So imagine being in such excruciating pain, that you do not want anyone touching you; let alone a four-year-old jumping on you, bouncing into you, climbing on you, but you don’t dare say no because you don’t want to make him feel unloved. He doesn’t understand what it means when I say “that hurts” or “please don’t do that”. And he loves to give big hugs, he loves deep pressure. He loves climbing behind me on the sofa and me leaning back on him, but all I want to do is cry because every amount of playtime for him is pain time for me. But I do it because this brings him comfort and joy. Love is powerful that way.

I left my home on Sunday to go to church. I needed that more than I knew. I didn’t realize how much I missed the interaction with others until I was there. I interact with people daily through social media and texting, but it just isn’t the same as being able to see smiles, receive hugs and just be loved on for simply being you. By the time, my husband and I arrived at the church with our grandson in tow, we were both emotional. My emotions were creeping near the surface, ready to spill out in the form of tears. My husband was frustrated because our grandson is a runner and any chance he gets, he bolts. Even though he had his safety harness on, and my husband was holding onto the strap, he wasn’t ready to go on a run with him.

And Tyson has learned that if we are trying to pick him up from the ground, and we want him to stand, all he has to do is bend his knees when we are lifting him and he becomes heavier to maneuver.  He is big for his age. He’s four, but weighs 50 pounds and is over three and a half feet tall. Carrying him for any length of time is strenuous to us “old” folks. Wrestling him into his car seat so we can go anywhere is an everyday battle. Once in the seat, he does ok, but getting him in the seat is a battle, every single time. And he has to be in a five-point harness because otherwise he would be climbing all over the vehicle and exploring.  Safety and danger are words he does not understand. He always wants to sit in a regular seat with just a seatbelt but we know that won’t happen until he is much older.

Walking into the church lobby, as we were greeted, the tears started welling up, and I just didn’t have the strength to hold them back or hide behind a pasted-on smile and pretend everything was good. I was tired. Tired of my own pains, tired of always struggling with Tyson when we need to leave the house. Tired of always being the positive one. We all have our breaking point. Yesterday was mine.  I know the devil will do anything he can to try and break me. For the past three weeks, I have opted not to leave the house on Sunday. I’ve made excuses, stayed home, watched our church’s live stream of the sermon and remain isolated because that was so much simpler than struggling with him to go anywhere. In doing that, though, I lost out on connecting with other people and being surrounded by people that love us through all our struggles; people that are compassionate and caring and offer to help in any way they can.

Sailing Life

I think for most of us that live with autistic individuals it’s not that we don’t welcome the offers of help or hope that someone will be willing to help, it’s that we don’t know what kind of help to ask for. Our home is “proofed” for him. We have specialized gates, taller than him to keep him safe and confined to an area of the home where there isn’t danger. We have learned not to have “pretty” things that he can break. We know if he is outside, he must always be (1) holding your hand tightly (2) have his safety harness on (3) be secured in his specialty stroller with a vest and five-point harness or (4) be in a fenced-in area where no escape is possible. We know he has food aversions and sensitivities. We must always have his emergency seizure medications at the ready and available. And the list goes on. Going anywhere, we must still take a change of clothes bag and appropriate necessities, because he isn’t potty trained yet. And if someone opts to take him for a few hours, what if he hurts himself, has a seizure, breaks something, gets sick. Yes, he is verbal now. Can he communicate everything he needs to? No.

The one thing I can offer to those willing to ask: please don’t stop asking. For me, it’s hard to ask for help for anything for myself, Tyson or our family. But I am learning to accept it. Accepting prayers from others is easy. I love to pray for others too. Accepting offers of helping with Tyson is getting easier, but I know how challenging his behaviors can be and I know that we never know from one moment to the next what he understands and what he doesn’t, but we do know he is very smart and intelligent in many ways. And letting go and accepting help may not be in my nature, but being part of a community of people that love us regardless of our challenges does truly make all the difference in the world.

May you know how much Jesus Loves You~right now~right at this moment and always.

Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Blessings until next time~Carlene

 

 

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Living with an Invisible Illness

Psalm 28:7 New International Version (NIV)
7 The Lord is my strength and my shield;
my heart trusts in him, and he helps me.
My heart leaps for joy,
and with my song I praise him.

 

I am so thankful Jesus is with me daily. His Holy Spirit resides within me. He keeps me focused when the pain is too much. When the bed seems like the best place to spend my days, he reminds me that whilst I can spend an unlimited amount of time with Him lying in my bed, it’s more difficult to share His love for others from that position.

A little over a year ago, I was in a different place, physically. I was feeling pretty good, my fibromyalgia was held at bay with amazing supplements I was using to heal my body from the inside out.  I truly had forgotten, although I can’t imagine how I could ever forget, the all-encompassing pain that runs through your body when you live with Fibromyalgia. I was walking and moving a lot faster than a snail’s crawl which is how I feel now. It was my hope back then when the pain wasn’t as noticeable, fatigue was held at bay and I felt like a normal person, that I would never endure this painful condition again. I wasn’t afraid to go places and try new things for fear of a flare-up and intense pain that might last for days and weeks.

fibro3

I’ve thought long and hard about posting any of this because I truly believed I didn’t have to deal with it anymore. It was a thing of the past. Unfortunately, I know in my mind, as well as my body, that if I am not consistent in using the supplements, eventually my body would go back to what it was and the supplements alone were not enough for the change to take place. I was eating healthier and getting some exercise. As much as I knew this was inevitable, I had hoped and prayed the muscle aches, the pain, the fatigue/insomnia would not come back. Instead of having the sheer exhausted feeling of fatigue, now I am plagued with insomnia. It’s crazy!

But, I push through. I will not quit or give up. That’s not me. I’m not wired that way. Thank you, Lord, that I am not. Thank you Lord Jesus for giving me the strength and determination I need to keep putting one foot in front of the other, no matter how difficult or slow I may be. And watching people much older than me zoom by me in the grocery store or in a parking lot, makes me realize how slow I am moving. However, I AM moving. So very thankful that is the case and I am not in need of a wheelchair.

And because I guess my hand/wrist felt left out of the pain equation, the carpal tunnel is back with a vengeance. I’m back to using a night splint and sometime’s using the night splint during the daytime so I can function again. I never did learn how to use my non-dominant hand to write with. I wonder if that is even possible at my age? OR if I am too set in my ways to take the time to learn?

My internal temperature gauge is stuck in cold mode. I am rarely warm, no matter how many layers of clothing I wear. This totally sucks. I tried to think of a better way to say it that didn’t sound rude or unbecoming, but it sucks. Plain and simple. That’s why I always try to get my hubby to drive everywhere; his vehicle has heated seats.

I guess the hardest part of living with Fibromyalgia is you never know from one day to the next how you are going to feel. Knock wood, the osteoarthritis in my knees and hips are manageable at this time. The degenerative disc disease in my lumbar spine is worse. And the spill I had a few weeks ago, trying not to fall mind you, hasn’t helped.

Because of respiratory problems I live with, I cannot take pain medications to help with my pain. This causes problems with my breathing. Slows it down too much. So I rely on Jesus to carry me through the pain. I spend a lot of time sitting, with my legs propped up as much as possible and I long for the times when I was able to be an active participant in the lives of my family and grandchildren. I have four amazing grandchildren, one lives with us and I am blessed to see him grow and bloom before my eyes. The other three are several years older, involved in extracurricular activities and I haven’t been able to attend any of their outdoor events this year.  It makes me very sad. I love them so much and as much as I know they try to understand, I feel as if I am cheating them somehow and I HATE this part of this disorder/disease.

The other three have known for years that I can’t run and play with them the way their grandfather does. But I have always been able to go before. Now the cool weather is just too much for my body to handle. But I am so very proud of them for everything they do and someday when they are much older, I hope they will know without a doubt that if I could I would have been to every single thing they were involved in.

I push myself many days to get up and get dressed. Put on my “happy” face and “fake” it. I know living with me when I am in pain, is not a walk in the park. I become irritable and grumpy and short with others. I do my best not to let this side of me come out from behind closed doors, but it is so difficult because some days just getting dressed wears me out. The thought of running to the store to grab a few things is exhausting just thinking about it. It’s great if the store you go to has electric carts for customer use, that actually work and will last for the entire time you are in the store, but many are used so much they never have a chance to fully charge and the only thing worse than not having them available is using them to shop and the battery dying in the middle of your  shopping trip and then it’s like being stranded on an island in the middle of nowhere. Now you have a full basket of goods, but no cart in sight to transfer them to.

The single most agonizing part of the widespread pain returning is the muscle spasms that come, out of nowhere. I turned my head earlier to look at something, not quickly, but as I turned my head, a sharp muscle pain and I just had to wait for it to pass. And I get these spasms throughout the day, everywhere. Many you cannot just walk out. Most of the time you just have to wait until your muscles relax. It may be myofascial pain. I’ve been reading about it. This is something I will have to ask my physician the next time I see her.

I have many friends that live with Fibromyalgia and as much as we can be there to support one another, all of us live with it and have varying symptoms to varying degrees. Many of my fibro friends, can’t stand the hot weather or warm temperatures, drains them and all their energy. For me, I am completely the opposite. I love the heat. The hotter the better. Cold weather sucks the life right out of me. There isn’t a coat or blanket warm enough to keep me comfortable. And of course, I live in a state that is known for unpredictable weather.  One day it’s 80, the next it’s 40. It’s no wonder I feel so cold, right?

2 Corinthians 1:3-5   New International Version (NIV)

3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 5 For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.

I am thankful that I have Fibromyalgia because then I know how to extend comfort to those who deal with it too. I know that God allows us to go through many things in life as a way to be a testimony to others that put their hope in Him. I can still be a light to others by encouraging them, no matter the type of physical pain they experience because our earthly bodies are temporary. This is not our home. We are citizens of Heaven. But I also know that He does not expect us to suffer alone in silence. We are all made for relationship. Relationship with friends and family. All of us have a need to be part of a community, that is loving and supportive. And while all of us can be less than loving and supportive at times in our lives, that is where grace comes in. God gives us grace because He loves us, not because of anything we can do to deserve it. We all fall short in that area. All of us.

Be kind to others. Love them. No one, except for Jesus, knows the internal struggles and battles each and every one of us faces daily. And for each of us, no matter the battles, they can be debilitating if we forget to lean on The One who gives us life. The most important relationship you will ever have in this life is the one you have with Jesus. In my opinion.

Psalm 100:5 New International Version (NIV)
5 For the Lord is good and his love endures forever;
his faithfulness continues through all generations.

May you know how much Jesus Loves You~right now~here in this moment and always! Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Blessings friends~Carlene

 

 

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

 

 

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

 

 

 

I Often Wonder……

Isaiah 44:3 New Living Translation (NLT) 3 For I will pour out water to quench your thirst and to irrigate your parched fields. And I will pour out my Spirit on your descendants, and my blessing on your children.

I often wonder if the answers will ever come. I often wonder what goes on in your mind that keeps certain things just out of your grasp and I often wonder what you see that makes you gaze off in the distance as if something has caught your attention that only you can see.

I wonder why music makes you happy, but instruments playing cause you to cover your ears and bury your head.

I wonder what happens when everything becomes too much and what is the one trigger that sends you into a meltdown. Is it something I can control or remove from your environment or is there any rhyme or reason as to why it happens at all?

I wonder why spinning around and around brings you the most amazing release and joy, but makes me swoon almost to the point of collapse.

I wonder what it was like at the beginning of your life when you couldn’t communicate, did you think we didn’t care? I hope not.

I wonder what it feels like in your head; do you hear everything in the same tone? Do you hear all the noises at once, because I know that processing information for people diagnosed with autism spectrum disorder, many have a difficult time processing information or input you hear and you may need more time than most people to answer questions or respond appropriately.

I wonder what is happening within you when you run and jump and slam toys and objects into the floor; when you throw things without thought as to what can happen. Someone may be hurt or something may become broken, but all you seem to know is you have to throw it, you need to do it to make you feel better.

I wonder what happens when everything becomes too much, and you cry and whimper, because they are no words to describe or explain the overwhelming feelings you have and sometimes no amount of hugs or deep pressure helps you feel better, only crying yourself to sleep helps.

I wonder what happens to you and how your brain is affected when you have a seizure. Will those seizures change who you are? Will they affect your thinking processes? No one seems to have an answer.

I wonder why vacuums and ceiling fans are your obsession. I can’t begin to understand, but I know they are. I have heard this is normal for people with autism, just like when you line things up. You can be so rigid with that, but you love the chaos of toys strewn everywhere and it drives me crazy.

I wonder if you will ever understand the danger of running into the street or running toward water without one of us with you.

I wonder if you ever get tired of me asking you to repeat the same word you just said and if you understand I am only trying to help you communicate more clearly.

I wonder if you know who Jesus is. I wonder if you like going to church because you get to spend time with other children, your age and learn about Jesus, or if you just like getting out of the house and have some freedom.

I wonder why you bang your head, and even though it hurts, you do it again and again.

I wonder if you will ever to be able to read on your own. Or if you will always rely on pictures to understand.

I wonder if you will ever be able to live on your own, or if you will always need the support of family.

I wonder why you have night terrors. I wonder what causes them and why you must experience them because you already deal with so much and you are only four years old.

I wonder if you will ever be able to be outside without wearing a safety harness as we go shopping or to appointments. I wonder if you know we only do that so you can have a little bit of freedom, but we can keep you safe.

I wonder if you will ever take your Epilepsy and ADHD medications independently or if we will always have to hide them inside your liquids and foods. I wonder if you will always have to take medications to keep your brain from misfiring and your hyperactivity under some sort of control.

And while I wonder all of these things, there are many ways that you amaze me every single day.Tyson Vacuum image

I am amazed at how much your ability to communicate has improved over the last couple of years and how you work over and over to learn new sounds and words.

I am amazed that when you started preschool last year, you were considered nonverbal and only had 24 words under your belt, but by the end of the school year, you were speaking in 5 Word utterances.

I am amazed that you love with such a huge heart and tell me every day, without prompting, that you “wuv” me.

I am amazed that at times, you can sit still and remain calm, if even for five minutes. That’s a huge success.

I am amazed that if we show you pictures marked on a calendar you understand how many days you have to wait for something to happen.

I am amazed that you know how to use the potty when you want. It isn’t every day, but someday it will be.

I am amazed that you go to Speech Therapy every week and you improve on what you learned the week before. And this is part of our routine. Every week for two years.

I am amazed that you try to write the first two letters of your name but recognize all of them.

I am amazed that you know how to count from 1-10 on your own and are learning how to go onto 20.

I am amazed that you can recite the alphabet and can also recognize letters, even if they are not in any particular order.

I am amazed that you know what it means to put things in a sequence and you do it without error.

I am amazed that you love foods that are good for you. Tomatoes, cucumbers, strawberries, watermelon, bananas, apples, vegetables, yogurt and cottage cheese.

I am amazed that you can name almost every vacuum made by simply knowing how they look and are designed and how impressive it is when we are out in a store and you can point them out to me.

I am amazed that you like the taste of my coffee, once it has cooled off.

I am amazed that you never give up when you want something. You are almost relentless in asking for it, even when the answer is no.

I am amazed that you are willing to share your toys, even if you don’t want to.

I am amazed at how much you love animals and are not afraid of them. I shouldn’t be amazed by this, because your mom loves animals too.

I am amazed that you are always willing to try and you don’t give up easily.

I am amazed that when someone doesn’t want to do something, you gently remind them to try.

I am amazed that you can watch ceiling fans and fidget spinners spin for hours and you love this. Who knew something so simple could bring such joy?

I am truly blessed that you are in my life, Tyson. You have taught me many things. Some I have learned by trial and error; in many ways, I have a ways to go. But you never give up on me. You bring such joy to my life. I cannot imagine my life without you in it.

Every condition and disorder you have been diagnosed with, one would be more than enough for anyone to handle, but you deal with five. So no matter how many times, I want to cry and feel sorry for what you have been dealt, I look at how resilient you are and I know that because you live with these, I do too. I’ve learned to look at life just a little bit differently and realize that although these disabilities may afford you some extra help, that they do not mean you can’t. You just do things differently.

I love you; I love you more; I love you the most; I love you forever! This is what we say to each other before bedtime. He repeats much of what he hears but will say I love you too, on his own.

*I wrote this for our grandson, Tyson. He is four years old. Someday he may be able to read it or have it read to him, but I want him to know that although we never expected to have a Special Needs grandson living with us and being a part of our everyday life, challenging us to think outside the box of “normal parenting” if there is such a thing, that without a doubt, he has opened my eyes to the world around me. He has taught me so much in these last four years, more than I could have ever learned in a book.

I am thankful to our Heavenly Father that he felt he could entrust Tyson to our care, along with his mom. And I pray daily that we utilize every opportunity to help him learn and thrive in the world we live in.

May you know that Jesus loves you~right where you are right now and always.

Blessings, Carlene

Broken Pieces

I’m trying hard to comprehend the need for Tyson to break and destroy objects that he comes in contact with. Is it because it’s the natural course in the life of a toddler? The curiosity of how things are made and assembled? Or simply the pure joy of seeing toys, priceless mementos of a lifetime ago break apart, or does his need for sensory input figure into the equation? love-1221444_640

I learned long ago as a younger parent to not ask the Lord for patience; inevitably that required walking out many trials involving the art of patience, only developed as you learn to maneuver the pitfalls and blessings of parenthood. In my 30’s, it seems I was more apt and skilled to tune out the chaos. As I’ve grown older and presumably wiser, my hope was I would be much more mellow than I am.

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Some things require ongoing instruction; He’s teaching me to live in the Peace only He can give. To seek wisdom and discernment in areas that although familiar to when our children were young; they never seemed to have this much high-strung energy that never stops!

And in the same instant that something has been quashed, there’s this ray of sunshine that gleams thru and says, “I wuv you.” And sees my sad frown turned upside down, leaps in my lap and hugs me tight.

I talk to him about the broken objects and try and explain why we don’t break things. Some days, he says,”sorry” other days there is no comprehension that a mistake was made.

And I forgive.

I think of the many times in my life, I have done or said something that grieved Jesus, and yet, He loves every broken piece of me and forgives all.

He doesn’t hold our sins over us but lovingly rebukes and corrects us and allows us to live under His mercy and grace.

At the end of my walk here on earth, I want to know that thru all the brokenness and struggles, I learned to love and forgive like Jesus. To overlook offenses and show mercy. To not be the one pointing the finger, but the one saying, things are just things. People matter more.

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.
John 14:27 NIV

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

Blessings~Carlene