Category Archives: Special Needs

Days Gone By

As I sit here, I just can’t believe that summertime is over and school is upon us. For some districts, their school has already started. Our summer break didn’t go exactly as planned, but we still managed to squeeze in a few days at the Columbus (Ohio) Zoo and Newport (Kentucky)Aquarium.  Tyson had a blast and that was our hope. A great way to end the summer before starting all-day kindergarten this year!

Tyson Berwin Park

Climbing down -because he never does things easy.

As I look back on the past several years and read some of my past blog posts, I am amazed at how far Tyson has come. When he entered preschool two years ago, at the age of 3 he had 24 words and some of them weren’t even true words, but sounds he made for something.  Now at the age of 5, he not only has unlimited words in his vocabulary but is speaking in multiple sentences at a time!!! We are so thankful to the many speech therapists that have worked with him and continue to work with him on articulating each syllable he speaks. He used the word “very” quite often but still says “berry”. And somewhere along the way, this child has come up with the phrase”not quite yet” when asked if he is ready to do something or finished with it.  It is quite comical because he is ever so serious when he says it.

He is very excited to be going to Kindergarten. He will be in a Special Education Resource Room for most of his learning time, but as he excels in areas or becomes proficient, he will have the opportunity to spend time with his neurotypical peers in another classroom, as well as going to gym, music, art, library, and lunch with them.

Four more days and he will be boarding his schoolbus and starting his adventure for the year.  To say that I am excited, would be an understatement.  I love him with my entire heart and then some, but I am ready for my own break from him.  He is so full of energy and inquisitiveness, this grandma is ready for some downtime.

A friend asked me if I thought he would do well in an all-day class and quite frankly, I think he will be amazing. He THRIVES in a structured environment.  The night of the school open house, it took a long time to get him out of his classroom. So many things to see and do. The hardest part of the whole day will be getting him up very early (for him) to get ready and eat before his bus comes.  I am sure he will be one of the children that will fall asleep on the ride home.

Over the summer, other changes have taken place. Our son moved back home, with a new puppy, that is not trained yet. He is a beautiful dog, but still very hyper and having one hyper “boy” in the house does not help the dog calm down. I keep praying a magical fence will appear around the yard and then both boy and dog could run until they were too tired to move.

Psalm 62:5-8 New Living Translation (NLT)
5 Let all that I am wait quietly before God,
for my hope is in him.
6 He alone is my rock and my salvation,
my fortress where I will not be shaken.
7 My victory and honor come from God alone.
He is my refuge, a rock where no enemy can reach me.
8 O my people, trust in him at all times.
Pour out your heart to him,
for God is our refuge.

As I recover from the medical problems I experienced in June, the Lord and I have been spending more time together and this is exactly what I needed. The waiting game has always been a hard thing for me. I am great at telling others that God is in control and everything in HIS timing, but I am not very good at following that advice for myself. I have never had this long of recovery time after having a cellulitis infection, ever. And then I remind myself, it just wasn’t the cellulitis. The lingering memory problems from the sepsis is one of the struggles I am having. I know memory problems come with age, and I totally get that, but the struggles I am having makes me feel like I have dementia some days. My husband can tell me something, and the moment I turn from him and walk away, I forget it. I then ask him about the same thing and he becomes agitated because he JUST told me about it. Now,  I am trying to repeat out loud everything he tells me in the hopes I will retain it in my memory.

Short term memory and cognitive problems are a known response to having

sepsis/septic shock in your body.  The fatigue isn’t anything new. I’ve lived and dealt with fatigue for over 10 years due to the fibro. I’m used to fatigue, it’s just that I used to be able to walk more with my cane and now everywhere I go, it’s my walker or wheelchair. I keep doing my home exercises and getting out as much as possible to build my strength. My therapists and home nurse, before discharge were happy for me and all the progress I am making, but being the person that doesn’t like being out of control, I am struggling to see the progress. Today, I woke early (8 a.m.) and haven’t taken one nap all day.  I guess I am making progress. I will be calling first of the week to have the hospital bed picked up, as now climbing our stairs is possible.

Life happens. It goes on. Even if we aren’t ready for it to go in the direction it heads. Jesus is at the helm in my life. Sometime’s as life happens, I am reminded that I truly do need to rely on HIM for everything. Sometime’s I need to slow down and take care of me.  In my mind, I know I can’t take care of others if my well is dry, but there are time’s things happen that remind me of this fact. My well is slowly filling up, and as it slowly fills back up so I have all the love I need to pour out on others, I will learn to be still and wait on the Lord.  I am forever grateful for the people the Lord places in my life to remind me that progress, no matter how imperfect, is still progress.

May you know how much Jesus Loves you~right now as you read this and always. Jesus can turn any mess in our lives into a message and any test we face into a testimony. #HopeAlwaysHaveFaith

Blessings~Carlene

 

 

 

 

Tender Mercies

Mercies New Every Morning

Just as the Lord’s mercies are new every morning, I am finding my compassion and mercy must be just as new every day and the events from the previous day must be filed in the crevices of my brain as another day done.

It is so easy to hold onto hurts, hangups, and insecurities and let them fester in our minds. If we dwell on events that have happened days before or years before, we are not living as Jesus Christ wants us to.

Today was a difficult day in our home. For all of us. It didn’t start out that way, most days never do but throw in a child that can meltdown in a moment, and heated words and tempers flared toward one another and you usually have a recipe for disaster. I was reminded of this as my husband attempted to usher our grandson into the house after he climbed down the steps of his school bus with little success. He’s a runner and he loves being outside. After many months of  a cold winter, it’s understandable that he doesn’t want to come into the house, but not only is he not old enough to be outside alone, he has a tendency to run as soon as he can and chasing him around the house or down the street to catch him and encourage him to come inside is less than ideal. It usually requires one of us carrying him in, kicking and screaming, literally.  And as usual, if there are cars passing by or people they may think he is being hurt or abducted. In today’s world, there is always a fear that someone will think that.  And the stares are just as bad as if someone actually says something. Nothing was said, but there were stares and immediately you are on the defense. Even if you don’t want to be. No one, unless they live with an autistic child, can understand the stares or unspoken comments just lingering there.

While we try to calm him and explain why he can’t come outside, the person passing by makes her way to our front door. I opt to be the person to open the door and am ready to matter-of-factly let this person know, everything is ok; he lives here. When she just comes to tell me, I totally understand what you are going through. My child is autistic. At that moment all defensiveness subsides and I am so thankful she chose to come back and speak those words. She stood on my porch for many minutes and we talked about how difficult it is and shook hands knowing that she is not alone in this journey either.

That one event changed the course of our day for all of us. Everyone was on edge for the rest of the day. But we didn’t have to be. We could have chosen to let that moment go and continue with our day; however, no one told our grandson that it was over. He managed to stay in his defiant mood for most of the day. Nothing was going as he wanted, so, therefore, he did what he does. He screamed. He cried. He slammed himself into the wooden gates that separate rooms. He threw a tantrum in the vehicle because he wasn’t getting his way.  I’ll admit there are times like today that I cry inwardly because I know that some of it he can control and other moments the overload is just too much and that is the only way he can react because he is lost inside himself.

We go through this so much, that it is part of our normal. We don’t like to go through it, but some days we get through with showing mercy and grace.  And then there are days like today when a rough day seems to hit all at once and nothing said or done, makes a difference. So I pray, and I seek the Lord. I pray for wisdom and clarity, give me the right words Lord. Help me; help us.

His routine on Tuesday’s is so different from his other days of the week, that right now, Tuesday’s and the weekend days are the hardest. On Monday, Wednesday, Thursday and Friday, these are his days of joy. He goes to ABA therapy in the afternoon and he loves going and working on new things and learning new ways. But not on Tuesday. On Tuesday he goes to Speech Therapy. He has been going to speech therapy for over 2 1/2 years.  I know there are days he doesn’t want to go. He wants a break. And I will admit, there are days I don’t want to have to go to one more therapy session, but it has helped him so much to develop his language and speak, that we won’t quit or give up or give in.

Three years ago, he didn’t speak. He was nonverbal. He didn’t make eye contact or engage with others. He was in his own little world and very rarely were we let in. Now he wants us to play with him. He loves learning. Putting puzzles together. Counting and reciting his ABC’s. He loves school and although he is developmentally behind his peers, he is catching up. And one day he will get there. I cling to that hope. I cling to the day that his words will be clear and communication will no longer be a problem. The funniest thing is that when he is mad, his words are very concise and clear. It’s only when he gets in a hurry to tell us something, that we struggle with understanding his speech.

We were concerned about how he would react to his new baby sister. Would he hurt her? Would he understand that she is fragile? Would he love her or at least like her? We had nothing to worry about.  He worries when she cries and he tries to soothe her by talking to her or giving her a pacifier. He is so in love with her. And yes, we still have to watch him like a hawk, because there have been times he wants to pick her up from her bassinet and soothe her cries. He loves holding her and rocking her. I know he will always be a great big brother to her and how lucky she is.

As he became sleepy tonight, he made his way to each of us and in a small tearful voice told each one of us he loves us. And as we hugged him, we reassured him we love you too buddy.  Bless his heart. He doesn’t like having bad days either and at least he knows that our love will never change, no matter what his behavior is. He taught me a lot about forgiveness, by saying those three little words.

God’s mercies are new every morning. Ours should be too. We can’t change what happens in the past, whether it’s 5 minutes ago or 5 years ago, but we can change how we respond.

Now, as I sit here and I watch him sleeping, he looks so peaceful. The peace we had hoped would be part of our day, is, just not as we had thought it would be. He’s all boy. He wants to play outdoors, run wild and have fun. He likes picking up sticks and breaking them in half, He tries to help rake the yard and clear all the sticks that have fallen over the winter and early spring storms. Yes, it has made more work for us, but he tries. He hates being indoors, but being outdoors requires preparation. There has to be several of us with him as there are no fences or barriers from him going into the street and he still has no sense of danger.

My challenge to you is this: the next time you are out in your neighborhood or at the store or a local restaurant, don’t be the first to assume that a child is out of control and parents need to take care of that child. They may be doing the best they can with the situation they are given. And remember, God gives us grace daily. Not because we have earned it, but simply because He loves us.

Our charge by the Lord is to love Him and love others. My prayer is that I show the love of Jesus to all I meet and when I fail, grace and mercy will carry me through.

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

Blessings~Carlene

 

 

 

 

JOY

1 Thessalonians 5:15-19 New International Version (NIV)
15 Make sure that nobody pays back wrong for wrong, but always strive to do what is good for each other and for everyone else.

16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

19 Do not quench the Spirit.

Joy comes from the Lord. Joy does not come or happen because of our circumstances and thank the Heavens for that.  If we depended on life’s circumstances to provide Joy in our lives, most times we would be sadly disappointed.

img_20190220_165052_101

Joy is a fruit of the Holy Spirit.  It is not something you can turn on and off at will. It is a gift from the Holy Spirit.  I hear so many people say that they can’t find their joy or have no idea what joy looks like because their lives are so hard or difficult.  Joy has nothing to do with any of that.

It took me many years of prayerful time with the Lord and leaning on more mature Christians who know the Word and could counsel me in Godly ways to understand Joy isn’t something that happens.  It is just a part of who we are. If you are a believer in Jesus and profess to be a Christian and live, walk, eat and breathe a Christ-like existence, you have Joy. Period.  There will be times you can’t seem to grasp it. Times you don’t feel very joyful at all, but it’s there.

If I depended on life to grant me the gift of joy, I would be hard pressed to find it most days.  Happiness comes and goes but the Joy of the Lord is forever.

The past few weeks have been blessings and blessings with challenges or opportunities, I guess if I am being my optimistic, positive self. Our fifth grandchild, our second granddaughter blessed our lives. I call her my little peanut.  She is so tiny and precious. Just weighing a little over 7 pounds. She came into this world, with a good set of lungs and even a little bit of stubbornness. She loves when its time to eat; a little bit of a guzzler, can’t seem to get enough, but refuses to burp, which has been quite a challenge. But she doesn’t cry unless she’s hungry or needs to be changed. She has bright eyes and loves to scoot around on her back when lying in her bassinet. She almost reminds me of a “game-spinner”.  It doesn’t matter what position you lay her on her back, as she gets settled, she usually ends up facing the other way and she is just two weeks old today!

Being able to be in the delivery room, while our daughter gave birth, was so joyous of an occasion. The first time around with her son, Tyson, my other little buddy, that you have read about, I was banished out of her sight. Because I am a crier. I can cry at the drop of a hat. It can be something as simple as a cute commercial on television or something that isn’t even real.  With Tyson, for me, seeing my first-born child giving birth, I was so overcome with emotions, tears were streaming down my face and she couldn’t handle seeing those tears and I was given strict instructions, “Mom, if you are going to cry, you’re going have to back up, I don’t want to see you crying!” So, even though I was in the room to witness his birth, I wasn’t right by her side.

With our tiny Emmalin, I sat and held her hand, bound and determined, that no matter what, I would not let the tears spill out. And I held them at bay.  This time it was watching a miracle.  The miracle of watching our daughter give birth naturally (all the while, observing the epidural not work, pain meds do nothing to alleviate her pain of the harrowing back labor she was experiencing) with pure love, sheer grit, and determination to bring her daughter into view, was one of the most beautiful sights, this grandma’s eyes have ever seen! Praying and thanking Jesus for allowing me to watch and helping me to conceal my tears of joy. And realizing what a strong woman our daughter is. Even though she usually disagrees on being strong, this time she was strong and earned the respect of her parents, her older sisters, and her brother.

Ty & Emma

Big brother holding baby sister/Ty & Emma

As our family is growing, and we are learning new routines, Tyson is doing is best to be a good big brother. There are many challenges that go along with bringing a baby home to a home with a toddler that has had the rule of the territory for four and a half years. And while he proclaims to everyone and anyone, that’s “his baby”, he doesn’t understand why she can’t get on the floor and play with him or why he isn’t allowed to carry her around like a rag doll or why it’s not a good idea to poke her with his fingers in her face.

As we are ever vigilant, hyper-vigilance has become our new norm when he is awake as we have no idea what he may or may not do next. The jealousy of a new baby isn’t as noticeable as I thought it might be, because his mom and my husband and I are making special times for him too and there are many days you will find the baby in her arms, while she is sitting on the couch and him right beside them as close as he can get.  As with everything new for him, it will take some time for him to realize how “babies” actually work. He doesn’t comprehend why she can’t share goldfish crackers with him, but I think it’s great that he wants to share with her, just the same.

I am doing my best to hope and pray that the similarities I notice with Emmalin and Tyson are because they are siblings and not for any other reason, but it has always been on the forefront of my mind if she too will have some or all of the special needs he has and I continually pray that whatever needs she has, God, will continue to equip us to care for them as they need.

As an update for Tyson, he is thriving at his ABA (applied behavior analysis) therapy sessions. He loves going and right now he is attending 3 afternoons a week after he gets home from school.  On days when the weather closes the center, he is sad and doesn’t understand why he can’t go. As we continue to add more structure to his day, his aggressive behaviors and sensory meltdowns are not as bad. Instead of 6 hours a day dealing with them, some days it may only be a couple of hours to only 30 minutes. What a lifesaver this has been for all of us; as well as changing to ADHD medications that are working better for him than the ones he was previously taking.  We have also found, that playing with dominoes that his great-grandmother gifted him last year, can usually keep him focused and entertained for a while, without bouts of throwing or screaming.

Galatians 5:22 New Living Translation (NLT)
22 But the Holy Spirit produces this kind of fruit in our lives: love, joy, peace, patience, kindness, goodness, faithfulness,

May you know how much Jesus Loves you~right now and always! He can turn any mess into a message and any test into a testimony.  #HopeAlwaysHaveFaith

Blessings until next time~Carlene

 

 

 

 

 

HIS Peace

Proverbs 3:5 New Living Translation (NLT)
5 Trust in the Lord with all your heart;
do not depend on your own understanding.

I feel like I’ve been gnawing my way through tons of emotions this week to remember to trust in the Lord and realizing His ways I may not always understand, but He is in Control. Of EVERYTHING.

I love Jesus with all my heart. There is absolutely no doubt about that. I know HE is the God of Peace. I know He is Good. I know that many things happen in our lives and lately I have felt all alone, even when surrounded by those that love me.

I guess it’s some type of depression. I haven’t dealt with depression for me very much and so I have tried to banish it from my mind. I’ve lived with others that have depression and have lived with it for many years and I truly don’t know how they manage to make it through every single day, unscathed.

I know that I have always been able to turn to the Lord and He comforts me. He reminds me I am loved and no matter what I am in the midst of it is only temporary.  I cling to that hope. I hold on so tightly that sometime’s the tears don’t stop.  But no one sees the tears because I have learned to hide them. Even if they see tears, there is always an explanation of why. No one suspects anything. But hiding this depression isn’t helping me and it certainly isn’t helping anyone around me.

I am up late, usually alone, soaking in the silence and hanging on because once I go to bed, I don’t want to get up. I want to sleep.  Sleeping is easy because then I don’t have to face all the high stress in the house. High stress of living with a special needs child that creates stress for the rest of us. Stress, none of us, seem to be able to get a grip on. And as much as I don’t like to use the word worry, lots of concern over if our happy little guy will ever be back again. If his appetite will come back. If he will want to eat foods again that he used to love and were good for him. If he will learn how to control the sensory overload and not go on a rampage throwing toys, breaking objects, trying to hurt himself and hurt others. And while I pray about this and I think about it every single second I am awake, life goes on.

My friend Mary went to be with the Lord eight days ago. I grieve for knowing I can’t talk to her anymore, her children don’t have their mom to hug and hold, her husband must go on without her and all the people whose lives she has touched, have this deep sense of loss just as I do. But Mary knew her time was near. She had visions of being with Jesus. No matter how painful her last few days were, cancer could not destroy her spirit. She fought her short battle with so much grace and dignity, I can only hope I can go as peacefully when my time comes.  And I know I will gaze upon her face in the future. I know she is with our Lord and Savior, dancing and singing in Heaven showering Him with Praise and totally pain-free. And that gives me peace.

In 4 weeks, more or less, there will be a new life in our home. I am so excited to meet our newest granddaughter, but I am cautiously optimistic because I am concerned about how her brother will react when she cries. Will, he still gaze upon her as he does every other baby he sees with such awe and wonder? Or will he not understand and act out? Will he be gentle and kind, or will he………?

New therapy and new medications have started and I am believing this will be the missing pieces along with continued love and support to help our little guy gain some understanding of what works for self-regulation. For ways to cope when the noise becomes too much for his little body to handle all by itself. Sensory tools are being used in the home to help too. A new sensory swing that he now requests. A new “favorite game” he calls it. He lays on the couch and I lean back across him, applying pressure, for only a few seconds, several times in a row. And then he seems to feel better. And in those moments, we have peace.

blue sky clear sky cold fog

Photo by Bri Schneiter on Pexels.com

Even as I write this, I feel a peace settling in around my heart. A peace that only comes from God because, without Him, I would be a wreck of a human being.  I want this peace to become so much that nothing shakes me to the core. I used to have that peace and slowly, I let the distractions in my life, chip it away bit by bit. This last week has been proof of that. Thoughts that come to mind and I send them fleeing because they are not thoughts from my Lord. Words unspoken, because I realize we all deal with our emotions so differently and words hurt. Even well-meaning words can have an effect that nothing good can come from.

I consciously choose to love through it all. And I also consciously know without Jesus, His grace, His forgiveness, His love, and His mercy, I would be a jumbled up ball of emotions, shaking in a corner and wishing I could go home too.

I don’t like being depressed. Or even sad. I know the enemy would like nothing more for me to succumb to it. But the one thing satan seems to forget is I am a God girl and there is nothing he can do that will ever change my mind, my heart or my soul. I am a Princess of the King of Kings and I know my God is bigger than anything I will ever face.

Lord Jesus,

Thank you for loving me unconditionally, no matter what type of emotions or circumstances I find myself in, You are always there. You hold me up when I feel like I am falling. You strengthen me when my strength is gone. You give me peace where I can’t find any. You battle for me in the realms where I cannot go and Your love endures forever. Your peace no one can snatch from me. I hang onto the hope Father that you have plans for my life, plans to prosper me and not harm me, plans to give me hope and a future. You give me people to counsel me and share their testimonies of what a faithful father you are. You will never abandon me, or leave me. I love you, Lord! Father God, I ask that you forgive my unbelief when I doubt that you are working in my life. When I can’t see past the hurt and sorrow, when I weep, I know you are still working in and through me and on my behalf. In Your Mighty and Powerful name, Jesus. Amen

Jesus Loves You~right now and always. He can turn any mess you are in, into a message and any test you go through into a testimony! #HopeAlwaysHaveFaith

Blessings to all ~ Carlene

Raging Storm

lightning and gray clouds

Photo by Andre Furtado on Pexels.com

I love our grandson Tyson. I will do anything for him. Today, I did a whole lot more praying over him and crying out to my Lord, Jesus Christ seeking guidance and peace.

Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.
1 Thessalonians 5:16‭-‬18 NLT

I am worn out. We all are. One minute the day is going well and the next we are trying to figure out what sets him off into a crying, screaming, angry little guy. These meltdowns use to be sporadic, now they’re daily, off and on all day until he falls off into dreamland. Whatever is triggering these meltdowns is also affecting his speech therapy at school and in the outpatient setting. Maybe he’s tired of going all the time and just needs a break; we really have no idea.

The few times I’ve seen him focus on anything here at home lasts only for 5-10 minutes. He has combined type ADHD. Not only is he very hyperactive, he also struggles with focusing on tasks and is very impulsive. His Developmental Pediatrician says it could be attributed to being autistic while also dealing with adhd and seeking sensory input or wanting to avoid sensory overload. While we are trying medication to help in those areas, we are also waiting to start ABA services.

I wonder when these raging times happen if he’s in pain we don’t know about or he believes we know why and wonders why we aren’t helping him.

We have had one day this month where we saw a glimpse of our happy loving child. In our eyes nothing was different than any other day, but for him it was. He laughed and played and not one angry outburst or meltdown. I actually marked that on my calendar; as a reminder he did have a good day. Something to hold onto. Hope if you will.

My heart breaks for him. To live a life where he can’t express the noise within except by lashing out. He kicks, body slams into walls and doors, hits, bites, pulls our hair, throws toys, cups, plates full of food. I fear he is regressing in some way and I don’t know how to stop it.

Being 4, he is very inquisitive and like most children, special needs or not, he still investigates tools and their uses, tries to help fix things he thinks needs fixing or breaking something so he can fix it. And in his mind if something breaks, we can just go to the store and buy another.

Up until this behavior became an everyday thing, I would hear from other parents of the struggles they were going through and thank God we weren’t. Now I understand the sheer exhaustion of it all.

His baby sister will be arriving in a couple of months and as much as I don’t like to worry, because it only causes more unnecessary stress, I wonder what our life will be like then.

I know God is in control. I know He has great plans for Tyson. My prayer is that we will figure out how to help him in regulating his moods so we can live in our home without tears daily. For all of us.

As I sit here and gaze upon this sleeping child, there is a sense of peace that I haven’t seen across his face for a very long time.

I don’t know what our future holds, but I know The One who holds our future.

Father God, Help us help him. Help us be the light in the darkness of these storms. Strengthen us and pour out your peace upon us all. In Jesus Mighty name. Amen

May you know how much Jesus Loves You…right here…right now.

Jesus can turn any mess in our lives into a message and any test into a testimony. #HopeAlwaysHaveFaith

Blessings to all~Carlene

 

 

 

 

 

 

If You Could Do Anything, What would it Be?

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

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

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

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

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

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

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

Follow Your Heart

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

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

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

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

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

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

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

Blessings ~ Carlene

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