Giants

Jesus spoke to the people once more and said, “I am the light of the world. If you follow me, you won’t have to walk in darkness, because you will have the light that leads to life.”

John 8:12 NLT

 

All of us have dark times in our lives, times that seem hopeless and we feel that no matter what else happens, we will stay stuck in that dark place. It’s easy to let feelings like that wear on you.  I have had those feelings lately.

And in the midst of those feelings of despair and depression that takes hold and doesn’t want to let go, Jesus is there. He is my Hope. He is the reason I don’t give up and I don’t quit.

There have been many days that I would rather, pull the covers over my head and go back to sleep than have to get up and face the day and all it holds and that is exactly what the devil wants. He wants me and you to believe that nothing will ever be better and the feelings of hopelessness will consume us and everything in our lives. That is why it is so important to stay in The Word; to spend time with the Creator of the Universe.

Jesus came to earth as a baby, born to man, to save us and give us everlasting life. This life we live here on earth is temporary. This is not our permanent home. I know sometime’s I forget that. He endured hardships, trials, struggles and yet even though he never sinned, not once, He died on a cross, bore the sins of the world so that once and for all, sin would be no more.  He shed His blood for me. For you. He did this so you and I could have life and that through Him we would live forever with Him in eternity.

There have been many times lately, that I have hoped for that eternal life. No more pain, no more tears, no more frustrating times. He has a plan for our lives. And in the midst of those plans, heartbreak happens. But if we put our faith in Jesus, He will see you through it all.

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For the past several weeks, in our home, we have battled with our grandson. He requires a lot of patience and understanding. Living with a child that is autistic, you never know from one moment to the next what will happen. The demands of a special needs parent/caregiver are great.  And until you go through it, and take that walk, you can never fully comprehend all it encompasses.  It’s not an easy road.  Teaching him requires thinking outside of the box. His learning styles are vastly different from other children his age.  He processes information more slowly than most.  And just when you think you have him all figured out, when you know what upsets him or throws him into a sensory overload, you are right back to where you don’t know as much as you thought.

We love him immensely, but there have been many times, I have asked God, “Why?” Why is he one of the many that have to have these struggles? Why couldn’t he be normal? Why do we have to keep the same routines, no spontaneity allowed in our life, because this will set him off? Why must he have sleepless nights, with night terrors? Why do bright lights and loud noises hurt him so much? And while there have been no concrete answers, I was reminded of the story of the man born blind who was healed by Jesus and saw for the first time (see John 9 for the details).

I know that God has a plan for Tyson and his life. I may not understand the plan, I may have a hard time coping with what he goes through each day, but I have a God that is bigger than any problem that comes our way.  Through Tyson, I see the world through different eyes. Even through the tears, I am reminded that Jesus is with us. And with him. And how much he lights up when I talk to him about Jesus. While I may never fully know how much Tyson understand or comprehends, I know he knows Jesus. Worship music soothes him. Going to church and learning about Jesus makes him smile.

Tyson reminded me, late Sunday afternoon, how much he loves being with others that love Jesus too.  My husband and I woke up early Sunday morning, and quietly prepared to leave the house to attend church. Usually, we wake Tyson and take him with us, but I was being selfish and I wanted a break.  A break from chasing him and fighting with him to get in his carseat and stay buckled in. A break from his mood swings and impulsivity; so we quietly got ready to leave, leaving him to sleep with his mother and left without him. Later in the day, as he sat on my lap, telling me over and over, “I love you mamaw,” he looked at me with a sad little face and said, “you go church?” When I replied, “yes, papaw and I went to church,” as his tiny little lip quivered, he exclaimed, “I go church!”And I had to tell him no, not this week. He cried. And I realized then, that my selfishness caused him pain. The last thing I ever want to do. And I also realized that this tiny 4-year-old has a love for the Lord and even though it may be a struggle getting there, I won’t withhold that from him anymore.

During the sermon Sunday, the pastor reminded me that all of us must have the sincere faith and love that a child has for Jesus. A child isn’t afraid to ask and make requests, no matter how outlandish they may seem as we grow older. Children aren’t cynical like most of us, mainly because they haven’t had the life experiences we have had and take Jesus at His Word. Isn’t that how we should all be? Jesus came so that we could have life, and have it abundantly! He died on a cross so we could have eternal life! We should have nothing to fear because we have Jesus!

Worry can consume us, which becomes fear of what may happen, but Jesus tells us that He will always be with us, He will never leave us; never forget about us.  What a promise to take hold of and help us as we go through our days! He is the living water, and we will thirst no more!

John 7:38 New Living Translation (NLT)
38 Anyone who believes in me may come and drink! For the Scriptures declare, ‘Rivers of living water will flow from his heart.’”

I am forever grateful that I have a Savior that loves me unconditionally and is always available to me, no matter the time of day.  He is available to you too!

Luke 11:8-9 New Living Translation (NLT)
8 But I tell you this—though he won’t do it for friendship’s sake, if you keep knocking long enough, he will get up and give you whatever you need because of your shameless persistence.[a]

9 “And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.

Trust in the Father. Have faith. Hope Always.

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

Many blessings~Carlene

 

 

 

 

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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

 

 

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

 

 

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

Keeping it Real

For the Lord, your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.”

Zephaniah 3:17 NLT

 

 

I am encouraged by reading the above passage of Scripture.  Yes, Jesus is living among us. His Holy Spirit lives within me. He is Mighty and Powerful. He delights in me! He calms my fears with a love like no other and He rejoices over me with joyful songs.  This verse reminds me that no matter how things may appear to me, my Heavenly Father rejoices over me and my life!

I firmly believe that everything that we go through in life is for a greater purpose than we can see or imagine. I know that God is in control and when you have a personality like mine that wants to fix all the problems around and ease burdens, it’s easy to think you’re on your own.

HAHF

I love the Lord with an everlasting love. One that cannot be diminished by my circumstances. I know there is nothing I will ever face that he can’t possibly understand or hasn’t overcome.

I’ve been feeling out of sorts of late and I cannot pinpoint why.  I can think of many reasons but not specifically pinpoint it. Two years ago, when an invisible chronic illness forced me to reevaluate my life and retire early at the age of 51, I wasn’t sure what would happen or how our family would make it without my income, but I knew God would provide a way.  It was scary.  I had worked since I was 16 and being someone who typically fixes problems, I really had no idea how to fix this. I knew though, that if I didn’t start taking care of myself, I wouldn’t be good for anyone else.

I have never been the type of person that puts my needs above others. I am not wired that way, so trusting God and the Peace He imparted to me, made the decision, although scary, so much easier to make.

Three months after taking early retirement, my daughter and I sat inside a small exam room of our local Children’s hospital Developmental Pediatrics clinic finding out her son, our youngest grandchild, had Autism Spectrum Disorder and that opened up a whole new set of scary challenges. He was nonverbal. That was in 2016. He has found his voice but doesn’t answer many questions yet, unless they are specific questions he can answer.

No matter how much pain I was in, every day I would research and work with him to help him understand, teach him simple signs so he could make his requests known and try to bridge the gap between his mind and the world. His favorite phrase, now is “I love you too.”  He climbs up on my lap, wraps his arms around my neck and repeats that phrase over and over. Melts my heart.

Living within our means was a challenge when I was working full-time and bringing home a paycheck every other week. Living on a fixed income and having enough to last from month to month is nothing less than a miracle from God. And there are some months, there isn’t enough, but God always provides for our needs. We have found hope through food pantry programs and installment plans on bills to carry us through and the love of family and friends.

Somewhere along the way, dreams changed, priorities shifted and I feel like a failure. I know I should not feel this way, but deep down, if we are keeping it real, I do. I can’t be on my feet for very long periods, or my legs go numb all the way to my feet, the searing back pain makes me want to sit down and cry, but I hold the tears back.  The widespread pain I used to experience throughout my body is held at bay by all natural supplements I use and I thank God every day that I found those.  However, they don’t help with the searing pain in my back. It’s the type of pain you learn to live with and you adapt. Pain changes a person, even if you try your best not to let it.

I had hopes of working til actual retirement age and retiring to a warmer state with no snow and no cold weather.  But I don’t see that in my sights anymore. Now I see therapies, medical appointments and helping our grandson thrive in his life. And I truly am not trying to sound like I am complaining, because I love this little guy and would do anything within my power to help him succeed.

I don’t like clutter anymore. At one time, it didn’t bother me as much as it does now. I would guess the fact that I see it 24 hours a day 7 days a week probably has a lot to do with that. When I was working, and then coming home to a mess, wasn’t as important as sitting down and relaxing before cooking dinner, bathtime, and bedtime. Now everywhere I turn, there is a mess. Yes, having a toddler in the home is a tiny part of the problem, but the biggest reason, is I have become too complacent in keeping the house in order. For the past two years, I have been saying the clutter has to go, and yet as I view the room around me, it seems not only has it not gone anywhere, but it has increased! My answer is simple, rent a dumpster, and start tossing. It sounds like an amazing idea until you figure the costs and realize the budget you live on will never work with the idea.

A year ago, my physician encouraged me to consider having a bariatric surgical procedure to help me feel better. And I did consider it but knew there was no way that I would be able to have the allotted time for recovering from such a procedure available to me, so I gave up on those plans. I have been considered morbidly obese for years and no amount of changing the way I eat, ever seemed to help. Exercising is so difficult because of the searing back pain that I have become resigned to being the size I am. And that is scary because I know that if I don’t lose some weight and get down to a healthier weight, I am not only putting my health at risk, I am shortening my lifespan.

This depression in me has rendered me “stuck”.  I want to do more with my life. I want to be a light to others. I want to be healthy. I want to be around for at least another 40 years or so, God willing, but I know that if I don’t find a way to get moving, more than I am now, I may end up more disabled than I already am.

Since 2005, I have struggled with a thyroid problem. I was diagnosed with Graves disease that year, because not only did I have a thyroid disorder, but I also had an autoimmune disorder. I have been without a thyroid gland since 2006 when it was eradicated by radioactive iodine treatments and have had to remain on medications that replicate the production of thyroid hormones that control the organs in my body.  I have been struggling with keeping my TSH levels in the normal range and finally some good news that the dose they have me on is finally showing good results.

Living with obstructive sleep apnea requires me to wear a CPAP (continuous positive airway pressure) mask every night and the machine forces air into my throat and keeps my airway open. About a year ago, I found out that even though my CPAP equipment was working properly, my cells and organs were not getting enough oxygen to live well. So, supplemental nighttime oxygen became part of my routine as well. When someone lives with OBSA, if they sleep for 12 hours or 2 without equipment to help keep their airway open, they will always feel fatigued and may suffer from headaches, leg cramps, falling asleep the moment they stop moving or talking. I never realized how important oxygen saturation in our bodies was until I was lacking it. I felt like a zombie and couldn’t comprehend why I was feeling so horrible, until I was informed, after testing, that even though my airway was remaining open during sleep with the CPAP, my oxygen saturation levels were dangerously low nearing 60%, not the recommended 90% or higher. For me, sleeping without my CPAP/Oxygen is not optional. The only way I can sleep without it is in an upright position and then I am still lacking the proper oxygen my body needs.

As my husband, grandson and I prepare to take a vacation, that has meant putting aside money we really don’t have, so we can get away and relax, I have come to realize this may be what I  need to get back into the right frame of mind. A change of scenery and climate, along with being able to visit a loved one that I miss deeply, might just boost my energy levels again. I am counting down the weeks until this becomes a reality.

Every morning as I sit with God and pray, I see the clutter in my home and I don’t want my heart to remain in a cluttered state. I need to embrace the purpose in my days. Seeing the same four walls and facing the same daily challenges in raising a special needs child can make anyone feel isolated and alone. I know it has for me. I have always been a “people person”. I love being around others and engaging in conversations and somehow, I have got to find a way to do that again. As far as the clutter, I know that many experts suggest starting off small, working on a small area at a time and not looking at the big picture. It’s just so hard when you see the entire picture daily. There is no shutting it off.

I know our lives are always a work in progress. Growth can’t come if we are not willing to change or try things in different ways. I know that for every failure I have ever experienced in my life, there has been a lesson learned and life always looks better when you get through the testing than when you are going through it.

And I know, that the feelings of failure and sadness that have been holding my heart hostage, they too shall pass. I know this because I am loved. I am worthy. I am enough.

Thank you for listening to the ramblings of someone who knows that I have much to be thankful and grateful for and that no amount of “feeling sorry for myself” will help. I guess I need to see the words and read them to realize that. And I owe it to all of my readers. Without readers, there would be no blog and no reason to realize that God will allow many events in our lives to take place as He works on molding and shaping us into the person He created us to be.

May you know how much Jesus Loves You~right now, wherever you are and He is always available to you! #HopeAlwaysHaveFaith

Blessings~Carlene

 

 

 

 

 

 

Four Years Already!

Romans 12:11-13 New International Version (NIV)
11 Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. 12 Be joyful in hope, patient in affliction, faithful in prayer. 13 Share with the Lord’s people who are in need. Practice hospitality.

Three days ago, Tyson turned 4. It amazes me how time seems to go so fast the older I get. I remember the moment he entered the world and what great joy he brought to our hearts! To hear his first cry and to hold him close and think of all the great things he would accomplish in his life, dreams you have for your grandchild; the same kinds of dreams you have for your children. Dreams they will be healthy and happy and know how much they are loved. That adversity and obstacles will not cross their path and if it does, they will be able to cope with those and continue forward.  I remember thinking how perfect he was as I held him that very first time in my arms and thanked God for this beautiful life he was entrusting to our daughter and us to nurture and love and teach. Little did I know that not only would he face many challenges near the early part of his life, but that they would also change the way I viewed the world and allow me to see pure and simple joys in so many things I had taken for granted for so many years.

At birth, he was almost 10 pounds. He didn’t look like a brand new newborn, more like the size of a 2-3 month old and most of his newborn outfits he didn’t even fit into, but that didn’t matter because he was healthy, and appeared happy and slept through the night. Yes, we had to wake him to actually get him to do his feedings. He loved being swaddled in a blanket; the tighter the better, on one condition though, his arms could not be trapped in that wrapping.  They had to be free. He still loves to be wrapped tightly in a blanket or sheet. He loves the deep pressure that he needs for his sensory needs.

Four years ago, I had no idea what terms like sensory needs or sensory seeker/avoider meant. but I do now.  And stimming, I thought that had to do with floral arrangements, not something that a child with autism does to calm themselves. And what the heck was PECS? Did that have something to do with bodybuilding??? Nope. PECS is a picture exchange communication system for people that do not speak or can’t speak clearly enough for you to know what they want or need.

When you have a special needs child, there are so many terms that seem so foreign and so overwhelming that you wonder if you will ever make sense of them. You wonder how in the world am I supposed to remember all this and how do I help him make sense of it all. But God knows what we need and he places people in our lives to help us make sense of it and get us through our journeys. No matter what our journey looks like, He always makes a way.

At 26 months, Tyson was diagnosed with Autism Spectrum Disorder, Level 2.  I had no idea there was such a thing as Levels for individuals with ASD and was level 2 a good or bad thing? Click here to read the difference in the levels and what type of supports need to be in place to help each person. There are three levels of ASD. Level 2 under the DSM5-Diagnostic Manual means he would require substantial support. He was non verbal. Made very little eye contact; and did not play appropriately with many toys. He was happy doing things on his own without interacting with others, but has always been very empathetic and loving, especially if he noticed a family member was teary eyed or not feeling well. He would hug you and pat you on the back, as if to say, it will be okay.

As the months progressed, after his diagnosis, we had many other evaluations done to determine if the reason he wasn’t verbal was because of a hearing disability or a speech impairment. His hearing was fine, so that meant either he didn’t know how to form words to speak or he didn’t have a voice, but that didn’t deter us. He has been in Speech Therapy for almost two years (in August we will hit the two year mark). And it has been amazing to see him learn how to tell us what he wants through the use of PECS, simple sign language and short to the point words. Most recently he has been putting 4-5 words together to express himself! His utterances may not be grammatically correct, but it is music to our ears!!

For him, his sensory needs are many. Some we are still navigating through and learning. He received a diagnosis of Sensory Processing Disorder in October of 2016 from an Occupational Therapist that observed him and listened to our concerns/more questionnaires to fill out and he is definitely a sensory seeker.  Seeking out ways to get the input his body needs in ways that aren’t always safe or acceptable. He will climb on anything he thinks he can, even if it is not something any neurotypical child would consider doing. He plays hard. Danger and unsafe don’t mean a thing to him. He knows that my coffee cup is hot, but doesn’t understand that if he spills it, he could get burnt. No comprehension between what hot is and how it can hurt. He loves to bang his head on the floor, into the wall, on the back of a chair and even though he cries, the tears only last for a few seconds and he will do it again. And he has always done this for as long as I can remember. He LOVES water. But water is always a danger, because he doesn’t understand that you can’t go under the water and stay there. The street to him is a big place to run and be free, and the list goes on.

As a sensory avoider, he covers his ears when there are loud noises such as a vacuum cleaner or hair dryer turned on, but he can watch videos cranked at full blast, at a spring concert for our granddaughter the singing did not bother him, but the band instruments made him bury his head, because they were too loud. Every day is an adventure, because you never know what noises will bother him and which will soothe him. And bright lights or a very sunny day and he will cover his eyes, but he doesn’t like it totally dark either.  He has learned the difference between the sun and the moon. When we can’t see the sun anymore that means the sun has gone to bed and the moon lights the night sky. When the clouds are out at night and the moon is hidden, he searches to see where it is and he doesn’t like the explanation that the moon is hiding. Sometimes this alone can cause him to have a meltdown.

Stimming for him is a way for him to release when everything becomes too much in his brain. And just as ASD is different for everyone, stimming is different for everyone too. He loves to spin in circles until he gets dizzy which can seem like that will never happen. And when he finally stops spinning, he will start all over again. He laughs and smiles when he does this. And he loves to jump. On his indoor trampoline or a mat on the floor or when he grasps your hands and wants you to hold them while he jumps up and down over and over again.  Occasionally he will walk on his tip toes for a while and I have yet to determine if this is a form of stimming or just a part of who he is.

In July of 2017, he received an official diagnosis of MERLD. Mixed Expressive Receptive Language Disorder.  

Mixed receptive-expressive language disorder is diagnosed when a child has problems expressing him-or herself using spoken language, and also has problems understanding what people say to him or her. Follow the link above to learn more in depth information. Being in Speech Therapy, once a week for the past two years have helped him to expand his understanding, but there is still so much more for him to learn and understand. He also receives speech services through our local school district once a week as part of his IEP (Individualized Education Plan) for the integrated preschool program he is a part of.

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He relies on visual supports at school and home to help him understand what tasks he needs to be doing and how to accomplish them. Or when we need to prepare him for appointments or outings, we can show him with pictures and he gets it, but tell him and he may or may not understand. And some of the visual supports need to be broken down into steps until he learns them.  It doesn’t seem like it would be a big deal, until you try to teach him something new and he just wants to try and figure it out on his own, but has no clue how to do it. Steps are important. For example let’s say we want him to wash his hands. When he first learned to do this independently, he thought you just got your hands wet and that was it.  So Step 1 – turn on the water (with supervision or the bathroom will be flooded in no time-no joke) Step2 –  test the water-is it too hot or cold?? Step 3 – put your hands under the faucet and get them wet. Step 4 – put soap on your hands. Step 5 – rub your hands together so the soap gets all over them. Step 6 – Rinse the soap off your hands with the water.  Step 7 – turn the water off. Step 8 – dry your hands. Step 9 – put the towel back. Step 10 – all done. (No more playing in the water!)  Now for you and I we just simply wash our hands. But until he learned those steps he had no idea what it meant to wash his hands.  And the school and us, here at home, still have to remind him that he cannot play in the water or turn it on without help. We will continue to work on that and he may get it one day or he may not, because as I said before he LOVES playing in water.  Imagine having to do that for everything you want to teach him, that’s  just one part of his MERLD. A very small part, but with huge skill set learning.

In October of 2017, after having two unprovoked seizures, he was officially diagnosed with Epilepsy. Since then he’s had many seizures and we’re hoping the anti-convulsant meds he is on will hold the seizure activity at bay. His meds are in liquid form which he gets three times a day in his juice or milk. Sometime’s he is wise to it and will comment how “yucky” it tastes; and I will suggest that we just need to shake it up and mix the juice. The power of suggestion has been enough so far and he will take it. Out hope is as he becomes older he will be able to transition to tablet form of the medications.

Each time he has had a tonic-clonic seizure (formally known as grand mal seizure) he has no idea what has happened only that he is extremely tired and sleeps a lot. He also has absence seizures, where he appears zoned out or staring at something no one else can see. The staring episodes have happened since infancy,but EEGs never showed any seizure activity so we had no idea to be worried or concerned. And the EEG/MRI done in September did not show any activity during the testing. There is no rhyme or reason to his seizure activity. He is not left alone because it is not safe for many reasons, epilepsy being one of those reasons.

And yes, there are many days I’ve thought how much more, Lord? How many more trials will he face, but I know that Jesus loves Tyson as much as he loves all His children.

Right now, Ty doesn’t understand and comprehend all of his medical and developmental delays, only that he goes to the hospital to see his doctors.

When he first went on the medications for his seizure activity, we noticed a shift in his happy carefree self. His meltdowns increased and his behavior became more aggressive and for lack of a better term, angry. His appetite that had once been healthy and hearty became almost birdlike. It turns out that many of the AED (anti epileptic drugs) medications used can have side effects such as the ones we’ve been experiencing and thru trial and error, it may take several different ones to find the right one.

He’s always been hyper, but never so bad that he would be too busy to eat or sleep and bouncing off the walls or invading others personal space such as his peers at school. And because he just started preschool this year, a baseline of data needed to be established before seeing if ADHD played a role in the hyperactivity. After consulting with his teachers and medical specialists, ADHD was confirmed in March of 2018. The seizure meds had seemed to exacerbate the symptoms.

Even through all 5 diagnoses, he is still  full of wonder and adventure, our little blessing.  Yes, some days are very challenging and difficult to find joy when looking on the surface, but if you take the time to get to know him and see  the joy in his eyes and the love he has to offer, he isn’t any different than any other toddler. He is pretty amazing that he holds it together so well and many days when I get tired and wish he didn’t have to follow a medication schedule or have extra therapy to help him learn and blossom, I am forever grateful he has treatments that help.

Two years ago, he was nonverbal and. we had no idea how much he understood and/or if he ever would. Now he plucks dandelions out of the yard and with beaming pride brings them to me to smell and keep!

I will continue to advocate for him. I will continue to educate myself, our family and friends on every special need he has, but most of all, I will continue to thank God that HE blessed our family with this bright eyed babe four years ago. Our life is so much richer.

Thank you for continuing to follow our journey and being so supportive and encouraging!

May you always know how much Jesus loves you~right where you are in this moment.

Many blessings to all of you~Carlene

#HopeAlwaysHaveFaith