Cry Out to Jesus

I’ve been crying out to Jesus in despair for several hours. Living with autism isn’t for the faint of heart. In the last four hours, I’ve been spit on numerous times, hit repeatedly, had blocks, toy cars, a toy cash register and anything else he could find to throw at me. My hair has been twisted and pulled, and stabbed with a fork repeatedly and raising my voice doesn’t help and letting the tears and sobs come doesn’t either.

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I don’t know what triggers these times or why Tyson goes thru these moments. I don’t like them and I hate that in those moments I just want to give up and throw in the towel, but I can’t. He is depending on me to get him through all he goes thru. He depends on all the people in his life to help him learn and grow.

Since he came into our lives almost four years ago, our lives have changed drastically from what we had imagined. There is no time to just sit with my husband and watch a movie, or take walks or have any type of just us time. When Tyson is asleep, that’s when we rest or frantically try to accomplish housework or tackle projects we can’t do when he’s awake.

He plays hard, throws himself on the floor, bangs into and on things, runs into walls, constantly climbing and jumping, banging his head on the floor, into the back of the chair and into other people.

His attention span is only a few minutes unless he is viewing videos or television shows he likes, but we know too much screen time is not good for any child, especially with one that seizures can be triggered by videos he watches depending on the content.

I love this high energy child that is constantly wanting to go places and repeatedly talk about what he knows. Vacuum cleaners are his favorite subject. He wears headphones when they are turned on, but when they are turned off, they are his favorite “toy” of all time. We have to limit his time because of the fixation. He can share with you every single detail and when its time to return them to their storage area, he clings to the vacuum, becomes angry and agitated and won’t let go.

We appear like a typical family outside of the walls of our home. We work really hard to keep him safe and keep him from having outburst or hurting others when we are out. He is always holding our hands, wearing a safety harness, in a shopping cart or any other means necessary to go out into the world. If we go to a park setting, there must be at least three people with him or the area must be fenced in. He loves going and playing at the park, up and down the slides; swinging with wild abandon, laughing and wanting more.

Our home is never clean. Never spotless. Every day, there are toys mixed with food particles from him being angry and throwing bowls of food off the table because he isn’t hungry or doesn’t want what was placed before him. Highchairs don’t contain him anymore. He’s too smart for the five point harness. He knows if can’t get the latches undone, he can wriggle out of the straps with a little bit of determination and grit.

He is so smart. He can figure just about anything out on how it goes together or how it comes apart. He can count to 13 on his own, the number of stairs in our home. He can recite the alphabet and label each letter if asked. He calls himself Ty. Tyson is too hard for him to say right now. He can cook the most amazing meals in his tiny kitchen. He loves mixing and pretending to cook just as much as he likes helping me mix concoctions in my kitchen.

Since beginning this post, most of his toys have been bagged and removed to another room. The TV has been shut off. Music has been turned on. I’ve had to stop writing multiple times to get him off of furniture he should not be standing on, out of paperwork cabinets that hold his care notebooks and IEP plans. Tell him no repeatedly because he wants to make raspberry sounds and realizes he can spray you with his saliva. Position my chair in such a way that he can’t climb on my desk to mess with the mini-blinds covering the window above my head.

In between, he’s had a cup of blueberry yogurt and a cup of milk for a snack and I’m using this opportunity to help him say blueberry yogurt. His language disorder for expressive language is a struggle. His version of blueberry yogurt is boo og. Every moment he speaks is used for speech language therapy. Those moments don’t just happen at school or in speech therapy appointments, every moment he’s awake is when it happens.

Ugh!!! He just drew on his feet with a green marker and dumped his yogurt on the desk! So much for the calm.

The struggle is real. Its a glimpse into living with autism. A mere 5 hours out of 24. One moment he is hugging me, giving kisses and the next he is trying to break out the front door glass with his wooden toy hammer.

I am looking forward to when his batteries run out so I can take a shower and just sit still for more than one second. Right now we need to be in a padded room with nothing but us. I just was hit in the head with his tiny shoes that pack a powerful punch.

My joy comes from the Lord. Not my circumstances. I am so very thankful I have Jesus in my corner.

To the other families that “do autism” everyday, please know you are not alone in your journey. Even though it feels like it.

To everyone, may you know how much Jesus loves you~in every moment you live.

#HopeAlwaysHaveFaith

Blessings~Carlene

 

 

 

 

 

 

 

 

 

 

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Answer the Call

Are you living into the purpose God has called you to do?  I think I am, but how can we really be sure?  I always assumed that “the call” would be something grandiose and bigger than life, but what if it isn’t? What if the call God places on your life is what you would consider everyday mundane tasks?  And what I am becoming to understand and believe is that everything I do should give God glory and Honor.

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When I was working full-time, I didn’t consider working for a retail giant big box store my call, but I did do my very best to let other’s see Jesus in my actions and words. Seasoning my conversations with salt and grace. Being humble in spirit; no gossip; caring for others more than myself.  Extending grace when that was the last thing I would have done had Jesus not been with me.

God places the desires in our hearts. We have to be willing to pursue those desires.  We have to be willing to be interrupted to take the steps necessary to follow His lead. In this day and age, people will say, ‘I’ll do it when I have more time or I will do it when I have more money to fund it, or five hundred other excuses as to why NOW is not the right time.” And I know for one, I let doubt creep in and say, “you’re not good enough or you don’t have experience in this area or what will people think??” And the reality should be, “who cares?”  If God calls us to do something, big or small, we should jump at the chance, because it’s HIS Will for our lives.  We all forget, myself included, it’s not about us. It’s ALL about Him.

So, while I may or may not be a bestselling author one day, I know that right now the call on my life is to be a voice/advocate for our grandson, Tyson. Advocating for awareness for Autism Spectrum Disorder, Epilepsy, Sensory Processing Disorder and Language Disorder. I know it is my call to lift others up and to encourage them in spoken and written word and action.  I know God is working with me now to teach me who HE is and who I am in Him. Maybe someday, that will turn into a book to share with others, but it is not in my comfort zone to admit that I don’t have it all together and I don’t know everything I need to know and that I still have very much to learn about life, but He gently nudges me and He leads me by the hand, much as my earthly parents used to.  Sometimes he gives me a swift kick to get up and get going, when I would much rather stay in the comfort of my own world.

The past 4 weeks, our series at church as been called Church Interrupted.  God is calling the church, you and me, to do His work.  In your office, at your schools, at the deli where you get your meat, everywhere we go, He is calling us to remember our purpose here on earth.  To advance the Kingdom of God.  To lead others to Jesus.  For those of us that have accepted Jesus Christ as our Lord and Savior, with a repentant heart, we are to seek forgiveness, show forgiveness and accept the gift of salvation to live eternally with the Father.  And the only way to the Father is through Jesus. The only way to Heaven, is through Jesus Christ. He paid the price, on the cross. He bled and died for All of us and All our sins. There is nothing else you can do to get into Heaven no matter how good of a person you are. But while you are here, you are to do the Will of the Father.

Allow the Holy Spirit to lead you. When you pray, and can’t find the words, do not fret, because the Holy Spirit will provide the words needed as they waft up to the Father. Trust your instincts. Become in tune with Him. God lives and dwells in the hearts and souls of believers and therefore knows our desires. He knows what He wants to accomplish in our lives and there will be many times of refining and purifying, tests and trials, we will walk through. Storms that will cross our paths, but do not fear for He is always with us. God is bigger than any fear that tries to squelch those dreams and desires.

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.”- Zechariah 13:9

Trust that what God is calling you into or out of, that He will equip you with everything you need to accomplish the task. Do not be afraid. Do not grow weary. Do not give up. Let you Faith in the Lord guide you when your eyes cannot see the outcome. Be a blessing to others as the Lord blesses you.

May you know that Jesus Loves You~at all times and in all seasons of your life. #HopeAlwaysHaveFaith

Blessings to each of you ~ thanks for stopping by!

Reflections

As I sit here thinking back on the last several weeks, I am reminded how precious our time is here on earth and how important it is to live our lives to the fullest every single moment we are given and whatever we choose to do, we do it with unbridled passion. Near the beginning of the month, a lifelong friend, that had so courageously battled cancer and never given up hope that she would survive, was killed by her husband.  

She cherished life and her children/grandchildren. She loved her friends and always had something positive to say, no matter how bleak things were for her. She was always smiling, for as long as I can remember. Always smiling on the outside. Always a kind word. And the last time I had spoken to her weeks before her death, she was still hopeful and joyful, even though, as it turns out her life was less than joyful. She chose to live life in such a manner to leave a legacy of loving others with kindness and compassion. She will never be forgotten. She touched so many lives while she was here.  

After the news of her death and paying respects, joining in the sorrow of the loss that many of us feel and celebrating who she was, I realized that none of us know the time or day God will call us home. So, with the time I have, I better us it wisely.`

Prior to the first of the year, I had prayed and planned and envisioned what 2018 was going to look like, what I was going to strive for and what my theme for this new year would look like. My theme is the same: Focus on God, Be Intentional and Savor the Moments of Life. My visions have shifted.

I realized that as I attempted to build an online business with Plexus Worldwide as an Independent Ambassador, I loved connecting with others and offering them hope, through health and wellness supplements, I did not like the “business” side of it. No matter how many customers I gained or other people that signed up to do the same, that is not where my heart lies. I could go on living that lie, or I could get real and realized that God has a different plan for me. When doing something that you are not 100% all in, no matter how much you try to convince yourself, there will always be feelings of resentment or maybe resentment isn’t the right word, but feeling like if I continued on that path, my family and I were suffering, emotionally.  I just knew that it was preventing me from being the person I was created to be.  I will always have GREAT things to say and share about Plexus and the products they offer, and I will continue to use them because they have helped me to feel so much better, but this is not where my joy comes from.

Jesus is my joy! Reading the Word, learning Truth, sharing the Good News that is where I find my joy, that is where I feel fulfilled. Hope comes in many forms and loving others comes naturally to me. I always look for the positive in any situation. I choose to show grace and mercy as much as humanly possible. I have many flaws, as do others, but I look for the good.  There is so much evil in this world, so much hatred and greed and people that are all about themselves, I don’t care to watch the news anymore. That’s all you see most of the time. It’s sad, but the one thing that never ever changes is Jesus. He is the same today, as he was 2000+ years ago, and he will be the same 2000 years from now. He is the one constant in my life. He is my Lord and Savior and He is my friend. 

He has seen me go through so much in my lifetime, and He still loves me. He weeps when I weep and he rejoices when I rejoice. My life has been far from perfect, there have been many choices I have made that have caused others to hurt, emotionally and as he works with me to realize that there is nothing I can do to be perfect this side of Heaven, he has taught me that forgiveness and love can cover over a multitude of anger, hate, evil and despair. When the demands of being a wife, mother, sister, grandmother, and friend become overwhelming, when there isn’t enough time in the day to accomplish all you hope to or need to, when the expenses outweigh the income, He always provides a way for things to work out. When you feel like you are in a tunnel and the walls are closing in, He is the One who lights the path and helps me to hold it all together. Days when I feel like screaming or crawling in a hole somewhere, He is with me. He comforts me. He lives within me. He guides me. 

I sit here in the midst of chaos. Toys spewed all over, crumbs left on the floor by a toddler, laundry overflowing that needs to be folded, dishes stacked high waiting to be washed, bills stacked up and I can choose to do two things, I can look at them as blessings in disguise or I can choose to be angry that no one else seems to notice. 

I choose to see everything in my life as blessings.  There are toys because He gave us this gift in the form of an inquisitive young child that wants to know how everything works and why the wheels spin on the toy truck, or loves the idea of the “black” sweeper, even though he can’t handle the noise of it, the crumbs and the dishes piled high mean there is food in our home to nourish our physical bodies, the laundry means we are fortunate enough to have more than one outfit to wear and a washer/dryer to care for those outfits.  The mess all around is contained by these four walls, we have a home to live in and a roof over our heads.  As I sit here typing this, I am watching my grandson, shred a piece of paper all over the floor, knowing that is just one more thing on my ever-growing list, but my life without him would be so lackluster and boring.

Every single child is a gift and a blessing. Some require more care than others. Extra care that you aren’t sure what that looks like or if it will ever happen where less one on one care will happen, but you embrace them. You love them. Living with someone on the Autism Spectrum is overwhelming, rewarding, crazy, chaotic and sometimes very stressful. Being able to cry out to Jesus and sit with Him in the midst of the chaos, keeps me sane. I think.

If you are living a life that is not what you want, you do have the power within yourself to make the changes.  It may not be easy, it might be the hardest thing you have ever done, but you are worth it.

May you know that Jesus Loves You~right where you are.

Blessings~Carlene

Rest in the arms of Jesus Sam! I love you and miss you deeply. (Samantha Howard Freels, July 7, 1965 – January 12, 2018)

Samantha

 

 

Subtle Differences

In the past few days, I have been pushed around, challenged to hold true to my faith and always remember that there is a reason for everything and God is in control.  I haven’t been pushed around by bullies but by this mysterious disorder known to many as Autism Spectrum Disorder and Sensory Processing Disorder.

For the last year and 4 months, autism has lived in our home, officially.  And while, we have learned many things, and learned how to cope and work with this mystery, I am learning that it truly is a lifelong learning process, not just for our grandson who has autism, but for those of us that love this little guy and want so much for his life to be as normal as possible.

We can’t go to the park or even in the backyard unless there is a minimum of three adults with him. Why? Because he is a runner. He loves to run, and he doesn’t care if he is running down into a creek bed of freezing cold water or into the street with traffic. When he starts running, no amount of hollering at him to stop, or calling his name works.  Which means you have to run just as fast as he does or faster in hopes you can catch him before he enters the danger zone. This was the case yesterday morning when he figured out how to get out the front door, off the porch and ran into the backyard in his pajamas of shorts/shirt and socks in 20-degree weather. He was on a mission to get to his swing set.  He is a sensory seeker, which is part of his sensory processing disorder, he is looking for things that will fill the need of whatever stimulation he is missing and he will climb on anything, regardless if it is meant for climbing or safe to be doing so. EVERY DAY is a battle. And if he doesn’t have something solid to climb upon, he will use a toy or toys stacked up and attempt to do the climbing.

He figures ways to climb over the safety gates that are installed to keep him safe, on end tables and desktops if he sees something he wants or wants to investigate. And then he will jump off of them, regardless of how high up it is or what may be in his jump zone that could be dangerous or harmful to him.

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He doesn’t like loud noises and as much as he does well at his preschool in a small group of people, he doesn’t like a lot of people in one space. There are times he will run and hide in a wooden cabinet or under a table or cover himself with a blanket, so he is safe and hidden from the world. As he becomes stronger with each passing day, it is difficult to keep him reigned in one area. At age 3, he weighs 38 pounds and is over 3 feet tall.  Putting things up out of his reach is not as easy as they were a year ago. He has always had great strength since birth. Never needed help holding his head up, although we did.

He slides down the wooden stairs on his belly, feet first, and laughs and giggles when he gets to the bottom, running up to do it all over again. I hold my breath a lot. I am so afraid he will seriously hurt himself, but I’ve come to realize that the vestibular input and proprioceptive input he gets from doing a thing like this, he can’t get any other way. Or no way that he likes so far. His mini trampoline, use to provide enough input, he didn’t need more aggressive forms, but now the trampoline just isn’t enough. He can be very aggressive at times, and its hard to try to explain to him that he can’t headbutt others or constantly bang his head on the floor or the wall.  I know I am not the only person that has lived with a child like this, there are many of us that live in silence, because people who don’t experience it on a daily basis, can’t begin to imagine what it is truly like. And then there are sweet calm moments, like right now, where he climbs on my lap, gives me a hug, lays his head on my shoulder, just for a moment to take a break from his high-strung activities and lets me know he loves me and for a moment all is peaceful. But it usually doesn’t last very long.

Each one of us is a work in progress, from the day we are born.  Life experiences shape who we become and why we act the way we do. For most children, language develops at 6 months.  It may just be babbling, but it is a form of language. Speaking and language development is crucial to know if your child has a problem or a developmental delay in communication. By 18 months, he still wasn’t saying anything except ma and da.  Not even mama or Dada, And every time we saw the pediatrician, we were assured that he had done so many other things, early (sitting, crawling, walking) that he was just gonna be slower with talking because he was busy. Repeated attempts to have him tested fell on deaf ears. Well-meaning friends and family offered advice.  Here’s my two cents on this matter: If you think your child has any type of developmental delay, press for the physician to make the referral for testing, to determine what the problem is. You know your child, You spend the most time with them.  I am glad we finally found a doctor that was willing to listen to our concerns and give us the referral we needed.

When he was diagnosed at 26 months, he had just those two words and very little eye contact with anyone. Thanks to early intervention services, speech therapist, developmental specialists, and lots of work at home with him, he was able to start preschool this year, four days a week for a few hours a day. He started with 40 words, well under what a normal two-year-old would have and some of the 40 words were his “made up” words for objects he knew about.  Now after being in preschool for over 2 1/2 months his vocabulary is growing and he is just starting to put two or more words together to form two-word phrases. Since being in therapy, we have learned that his language delays are both expressive and receptive language delays. So his understanding is limited right now, but he is learning and he is thriving.

We are very fortunate that while most children on the spectrum have struggled with sleep, he is not one of them. There is always something to be thankful for. Always.

And when I want to sit and cry because life isn’t fair, and these were the cards we were dealt, I could be angry with God and I could wonder why him? But I am reminded of a story in the Bible, that puts it into perspective the best.

John 9:1-5New Living Translation (NLT)

Jesus Heals a Man Born Blind
9 As Jesus was walking along, he saw a man who had been blind from birth. 2 “Rabbi,” his disciples asked him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”

3 “It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him. 4 We must quickly carry out the tasks assigned us by the one who sent us.[a] The night is coming, and then no one can work. 5 But while I am here in the world, I am the light of the world.”

I don’t know why our grandson has Autism, but I do know that God will work it all out. I know that I have learned many things about this Spectrum Disorder and while he is learning his way and knowledgeable about many things he can’t share with us yet, I see it every day.  He is very smart for a three-year-old. He loves to fiddle with things and take them apart to see how they work, he might be an engineer someday or maybe even a teacher. He is learning what numbers are and what they mean, learning about colors and shapes and loving every minute of it. He is slowly starting to interact with others, and I am thankful for that. At home, his interactions are that of a typical child, in public, it’s a slow process, but a process just the same. He uses a combination of spoken words, pictures, and sign language to request what he wants. Most of the time, we understand, the frustrating times comes when there is no picture and he tries and tries and still we don’t understand. As much as it is frustrating for us, I can only begin to imagine how frustrating it is for him.

His memory is excellent. If he has experienced it, he can share in one-word utterances the details. We have been talking to him lately about getting his hair cut.  It’s way too long for our liking, but he is very sensitive to anyone touching his head or messing with it in any way. But he remembers his first haircut. We took him to a local salon. (Me, his grandfather and mother whom he refers to as maw, da, and meem) And we rode in da’s car and boo boon (and papaw drove and after the haircut, they gave him a blue balloon).

But it was not a fun experience. It took two of us to hold him, while the stylist, tried using scissors to trim his hair nice and neat and we ended up getting a buzz cut because that was the fastest (and probably the most painful for him, i.e. loud, vibrating noise).

As I finish this out for today, he is pacing around the living room, with his shoes on and his backpack, he’s waiting for the bus. It will be a long wait, the bus will not be here until tomorrow morning. But telling him that school is closed, telling him there is no bus coming to pick him up, hasn’t worked. So, until he tires of wearing his backpack, he will continue to walk back and forth with the backpack on. Sometime’s he gets “stuck” and because it isn’t harming him to do this, we allow it. It makes him happy.

Isn’t’ that what we all want for our children/grandchildren to live happy, carefree lives. He was sad that we didn’t go to church today. But it is too much on me to try to contain him in the parking lot, while holding his hand, walking with a cane and carrying a purse and diaper bag, so we missed out today. We played together, read the first few pages of a toddler book and he climbed and I held my breath.

And tomorrow, I will do it all over again until he goes into another phase, that no one knows what it will be or what it will look like. And Jesus will get me through it all. He always does.

May you know how much Jesus loves you~he will meet you right where you are.

Blessings to you~Carlene

 

 

Grand “parenting”

When I had my children, I dreamt of my children growing up, getting jobs, college, and moving out to start their own lives. I didn’t dream of raising my children and then having to help raise one of my grandchildren. Sometimes though, for reasons beyond our control, life isn’t fair and tough choices have to be made.

Our son has moved out and is working and living on his own. Our daughter moved out for a month and a half, moved 1300 miles away and came home due to circumstances beyond her control and found out she was going to have a child. That was three years ago.  There were many mixed emotions from all of us, and wading through them and helping her make decisions wasn’t as difficult as some might believe because in my world love always wins.

1 Peter 4:8New International Version (NIV)

8 Above all, love each other deeply, because love covers over a multitude of sins.

All of us sin, all of us make poor choices and we can choose to love and be loved or we can not. So, even though our daughter made some very poor choices, we chose love over anger and fear.

We offered to help her figure things out and help her with her son. We had no idea that meant we would basically be raising her son, while she merely existed. We know that our daughter has mental health problems that need much more therapy than she is currently receiving, but we also are aware that as an adult, we cannot force her to be tested for conditions, unless she chooses to do them on her own.

We chose to show grace. To love unconditionally, which isn’t always the easiest choice and to help her in any way we could. In doing this, we have enabled her to take advantage of her situation. We are truly aware of this. But we also believe that she has similar conditions as her son, and believe that she is doing all she is capable of. It is definitely a difficult situation.

We never, in a million years, thought we would virtually be raising our grandson. She takes care of him, but not all day, every day as most parents would. She helps feed and changes him, but she struggles with his hyperactivity and constant need for attention. It breaks my heart. I love her and I love Him.

When our grandson was born, healthy and happy we had no idea the challenges that all of us would face. As he grew, we noticed how he didn’t speak and how he would sit and bang his head back and forth, he has an unimaginable strength for a toddler and many other signs. But he crawled and walked very early, so his weaknesses in other areas were passed off by physicians as no big deal. Some babies that have developmental milestones and reach them earlier than most, just means other areas will be slower.

It took until the age of two for medical professionals to take us seriously and realize that he did have developmental delays that needed to be addressed. At age 26 months, he was diagnosed with Autism Spectrum Disorder, Level 2, requiring substantial support and he was considered nonverbal.

The past year there have been many arguments between my husband and I and our daughter. There have also been many times of laughing and crying. We knew that our grandson would need more support and therapies and care than she could offer. And so we have become “grandparents raising grandchildren”. Our daughter still retains custody of her child and they live with us. For many personal and private reasons, we have chosen not to pursue custody at this time. I have been granted Power of Attorney over all of his financial, medical and educational needs, until such time, if at all, that his mother can take over 100%.

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Ours is a unique situation. Many grandparents raising grandchildren are doing it because the biological parents aren’t in the picture anymore or are incarcerated and unavailable or aren’t fit to care for themselves, let alone their children. We know she loves her son as much as he loves her, so we continue to help them both.

Taking care of our grandson is a full-time job. He cannot be left unattended for any reason.  He must be supervised at all times. For the most part, he is a very happy child, but there are times when he can be very angry and destructive. I believe the anger stems from him not being able to communicate and the frustration that comes with that. He doesn’t thrive if toys aren’t scattered everywhere. I don’t thrive very well if the house is in total disarray.

Over the last year, I have done hours of research on how to teach our grandson to communicate through words, sign language and PECS (Picture Exchange Communication System). He has learned his colors, the alphabet and learning how to listen. As with any three-year-old, whether they are on the spectrum or not, selective hearing is a given. But there are many times that he does not hear me, because sensory overload is in full swing and where we can distinquish the sounds and filter out what we are hearing to focus on one voice or one noise, he cannot. Not always. He loves working with sequencing patterns and this is no surprise because he loves patterns, lining objects up or stacking them .  He likes to help put groceries away, canned goods being his favorite, because he can sort the ones that are the same and stack them up. He doesn’t like when they are taken away from him and put away.

As I sit here and write this blog, what used to take maybe 15 minutes now takes hours, as there are constant interruptions. He wanted juice. He wanted a snack. He wanted me to play with him. He wanted me to hold him. He wanted to watch a video. He wanted to grab things off the fireplace mantle that he is not allowed to have. He wanted to carry the cat that doesn’t like to be carried. He wanted to take paperwork and books off my desk and play “52 pickup”. He has plenty of toys to play with. He likes to look at books, but not have them read, that takes too long. He can only have board books. If they are not board books, I must sit with him, or he will tear the pages out and rip the binding off the book. He wanted me to blow bubbles with my chewing gum and then he wanted my glasses off and music turned on, which means he is tired. He touches my face, plays with my hair, rubs his eyes, yawns and just when I think he is almost out, he pops up and hugs me, jumps down, runs back and forth in the room we are in and lays down to play with his cars. I get worn out just watching him. Last night, he found the Febreeze air freshener spray and made sure the living room was smelling good. By the time I reached him, getting out of my chair was difficult, he had pretty much used up the remaining 1/2 of the can that was left! Could I yell at him about it? Nope It was my fault I left it within his reach. I simply forgot to put it up. It still smells like Hawaiin Breeze in our little corner of the world.

The accordion style, hinged gates keep him from the stairway entrance and other parts of the downstairs where he cannot go unless we are with him. Kitchen. Laundry Area. And although he is mighty, he hasn’t figured out how to open the gates, but he is determined. I used to have a foot rest in the room until he realized that he could push that up next to the gate, so he could climb over and jump into the next room. Now, there is no stool to rest my legs on, but he is safe. It’s a trade-off I am willing to do. All interior and exterior doors have additional hooks and locks on them, so he doesn’t run outside and into the street or take off.

Right now, he is napping on the loveseat, after sitting with me while I rocked him back and forth and we listened to music. He loves music, but there are some songs that he cries, maybe the instruments cause the pain or the level of noise is too great. I draw him closer and hug him tight.

Over a month ago, we took him to get his haircut. It was a life draining experience for all of us. He does NOT like his head being touched for any reason and the scissors and clippers scared him, but he needed a haircut and we knew it needed to be fast. If I mention to anyone the word haircut in the course of a conversation, he will say “me”, “da” “maw” “mom” and “car”. And I will say, “Yes, you, me, papaw and mommy rode in the car and we went and you got your hair cut.” His response is “Yay!”. In his world, yay means “yay” and “yes”. He remembers everything.  He remembers the way to a certain store and if we don’t go the same way as we always do, he cries. He does not like a deviation from his routine at all.

As we continue to go to speech therapy every week and have The Play Project come into our home every week to work with him on engaging with others, pretend play, and communication, I will continue to strive to learn all I can to be his advocate and help him succeed.  My hope is that one day, his mother will want to be involved more.

We have three other grandchildren that we love also and sometime’s I feel as if they are slighted, but we do our very best to be in their lives as well and spend time doing things they like to do. Being a grandparent raising a grandchild is a struggle some days, because you don’t know where being the parent stops and grandparenting starts, but you know that you will do whatever is necessary to make sure that your grandchild with special needs thrives in their life.

Just a little over a year ago, I was working full time in a large retail company interacting with adults every day. Now, most of my interaction is with a few adults and a child that laughs, giggles, screams, cries, pounds his head on the floor and I wouldn’t have it any other way.

The hardest part is gaining support. I belong to several online groups of people that understand what I am going through, what we are going through and there we can share our stories, our tears, we can be real, no sugarcoating necessary.

My advice to everyone that knows grandparents that are raising grandchildren, whatever the reason is, offer to give them a break. The reason we have our children, when we are young, is so we can keep up with them and their needs. As we get older, it’s not always as easy. Be that shoulder when they need to vent a little or need a shoulder to lean on. Each situation is unique. Don’t separate yourself from your friends because their circumstances have changed. Ask what you can do to make the load a little lighter. It really will be appreciated more than you know.

May you know that Jesus Loves You! #HopeAlwaysHaveFaith

Blessings to you!

 

 

Accepting the Challenge

Yesterday, I became one of many that have accepted a challenge to live healthier for the next 90 days, knowing that if I can make the change in the next 90 days, I can turn it into a new lifestyle.

For someone who is considered “morbidly obese”, I knew that to be truly committed to this challenge, there had to be accountability. That is why I love that I am part of a group of Christian women that love the Lord and seek His guidance daily. They are a great group of ladies from all walks of life and have challenges ahead of them just as I do. Our challenges may be different, but the opportunities that God has placed us all together is not a coincidence. His plans are always perfect and purposeful.

So, one of the challenges I have faced even before this challenge officially began was learning to love water, instead of soda or some other high-calorie beverage. A week ago, I was lucky if I drank even 8 oz of water a day. Now I am drinking 120 oz a day.  My goal is to reach 200 oz a day (if my doctor approves that amount).  Along with drinking all the water and choosing to eat healthily and losing the extraordinary amount of carbs that have become habits for me, I am trying new supplements from Plexus Worldwide. I will take these supplements daily along with moving more.

healthy eating

I am gaining new insight into the world of chair exercises. Right now my balance isn’t great and standing for more than 10 minutes at a time, causes pain and serious discomfort. My hope is that as I move more, even in small increments, I will notice a difference for the good. I am praying that as I embark on this journey, I will not only become a healthier me, but I will be able to share my success stories with all of you.

Once I learn more about the supplements and how they will help to heal my body from the inside out, I will share what I am taking and how they are working for me.

God dropped this opportunity in my lap because I chose to be real about my pain and discomfort. Other people reached out to me and asked me to come along for the ride.

Jeremiah 29:11  International Version (NIV)

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

I know there will be times that Satan will try to discourage me and distract me, but I am committed to making a better life for myself. I am tired of writhing in pain and feeling so fatigued that sleep never comes. I want to enjoy life, not from the chair I sit in daily and look at the four walls. I want to be able to walk without pain, play with my grandchildren, dance with my husband and love life.

And the best thing about this new challenge is I am making friends I will have for life.

God is good! All the time!

May you know how much Jesus Loves You!

Blessings to all!