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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Easter

I posted this on my Facebook page earlier, but wanted to share these thoughts with all of you.

Praying everyone will have a Blessed Easter weekend. After spending the middle of the night hours in the emergency department with Tyson for breathing treatments that couldn’t wait and very little sleep, it made me think how weary Jesus must have been today, knowing that on Friday he would take the weight of the world’s sins upon His shoulders for us. For me and you to be reconciled with The Father.

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The story of Easter isn’t about Bunny Rabbits and candy and egg hunts, but about a loving God that doesn’t want any of his children to perish and I know he’s okay with Easter Egg hunts because He loves to see joy in the hearts of His beloved and for practical ways for the church, again you and me, if you are a believer to love one another and share the love He gives everyday.

Maybe, I’ll see you at the Egg Hunt or in the church building or at the grocery store, but know this one thing, Jesus Loves You very much!

However you and your loved ones choose to celebrate or observe this holiday weekend,may you know Jesus Loves You So very much!

#HopeAlwaysHaveFaith

Blessings!

 

 

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!

Undefined Chaos

I miss my laptop. I know its just an electronic device, but as someone that loves to write, and share my thoughts, I’ve come to realize how dependent I had become on that somewhat portable device. Yes, I can use my cell phone, as I am now but its difficult when the hard drive on your computer has all your reference material, media and other information you’ve saved that you may need. My memory on my phone obviously cannot hold as much. In the grand scheme of life though, it is very trivial to many problems others face.

I can use my husband’s computer but only if Tyson is sleeping because there are too many “cool” things he can get into in that space. And let’s face it, if you parent or care for a child on the autism spectrum when they rest, you either rest too or you clean and do things that need done that you can’t accomplish while they are awake.

This week has been a challenge. The local school system has been on Spring Break and the thought of getting any kind of break has been just that – a thought.

Tyson and I have been passing a cold back and forth between each other and I am so ready for it to be gone. When feeling under the weather, cleaning really becomes a chore.

Its almost 2a.m. here and he is wide awake! He’s currently taking my Crayola markers and stacking them together and showing me how high he can stack them. And exclaiming, “really tall”. I’ve tried several times unsuccessfully to remove them and put them up but he will have no part of it. I use them to color with, he uses them to line up and stack. He doesn’t want to go to bed, but I sense he’s wearing down. He stops what he’s doing and comes over to me and wants my hair down out of the ponytail so he can play with my hair. We have speech therapy in less than 8 hours and he’s not even asleep yet! His sleep schedule is getting worse by the day. Something has to give. Its not good for either one of us to have little sleep but it really isn’t good for him because it can bring on a seizure if he’s overly tired.

He’s become more aggressive than he used to be. Headbutting and hitting in the face and holding him tight doesn’t work as well as it used to. I’m praying his Developmental Pediatrician will have some answers or solutions so he can get back on a better schedule than we’ve had this week. For both of us.

He can’t be put to bed in a separate room to sleep in because the minute you put him in the bed, he’s messing with everything, pulling clothes out of dressers attempting to unplug lamps.etc., climbing and jumping,  removing hot bulbs from lamps, opening lotion bottles dumping them..and the lists goes on. If you lay with him, you become the object he jumps on, climbs on, pulls your hair and again no sleep.

The music is playing in the background now, soothing in hopes he will start to unwind and want to sleep. The only light in the room is the glow from this tiny screen. He’s still full steam ahead.

I know I’m rambling and I apologize. He’s my 24 hour job. I love him. I wouldn’t even want to imagine my life without him, but he is ALWAYS busy. My house always looks like there have been a multitude of children here, while there has only been one. Dishes and laundry get done on a regular basis when my husband is home because Ty knows how to climb out of his five point harness chair. Or done in the middle of the night when everyone is asleep and I should be sleeping.

Every child is a gift from above. I know God never gives us more than we can bear because in those times where we feel all alone and helpless, those are the times He wants us to allow Him in. God wants us, all of us. He is our strength our joy and our peace. Jesus gets me through all the craziness and chaos. Even now. Even when my eyes are heavy and sleep is at hand and I have a 3 1/2 old crying out “no bedtime.”

I’m learning to embrace all these moments. To savor the mess and all that comes with it and to realize His grace is enough. In every moment.

May you know how much Jesus loves you. In every messy moment of this thing called life. Cry out to Him. He is always listening.

Blessings from me and Ty.c046dec741cdaaaeb6e5bb14f47afc91

 

 

 

 

Bowl Cereal Milk

This is the most favorite sentence Tyson has. When he is requesting something to eat, these three little words convey all we need to know. He wants a bowl of cereal with milk. As his words increase, so do his phrases.  Of course his phrases are without prepositions or lengthy requests. Very much to the point. And often times, not totally understood by strangers.

He is a sponge and remembers every place we have ever been and how we got there. If we deviate from the normal route, he becomes increasingly upset that we are going the wrong way. He is also starting to repeat words he hears. We knew this day would come and he keeps us from saying things we shouldn’t. (Similar to putting a quarter or dollar in the jar if you misspeak). We catch ourselves and remember that even saying some thing as simple as sh*t is not something we should be saying and especially not around a mimicking toddler. So now when we are upset and think about even saying that, we say Sheep! It will be laughable at some point when he says that word in disgust and no one knows why.

I am so happy to see how much his language skills have flourished since starting preschool last August. Both speech therapists that work with him, at school and on an outpatient basis are simply amazed at how much he has grasped and continues to learn. Answering the who, what, where and how? are not as easy, but we will continue to work with him on that.

This past week, his sentences have been short and sweet. “Ty sick.”  “Ty not feel good.” “Sit on maw lap.”  “No wipe” (meaning my nose needs wiped). For the past week to the day, my little buddy has been dealing with a viral infection and a respiratory infection. You know he is sick when all he does is lay around and want to be held and sleeps. This is not normal for him. Today was the first day that I have seen a change. He is still very clingy, but has been playing with toys and watching YouTubeKids videos. Baby Tayo the little bus and PJ Mask are some of his favorites or watching dominoes stacked neatly in a row and then falling over in a simple push.  Marbles rolling down a circular toy. Over and over and over again.

He is the only child I know that lights up when the vacuum is brought into the room. He talks to me daily about the “black sweeper” we have. vacuums and ceiling fans can occupy him forever. We have to visit the vacuum cleaner aisle if we are in big stores or steer clear from them. I know this is related to his autism, but I do not have the slightest idea why that is.  He is starting to be brave and not holding his ears the entire time the vacuum is on. It used to terrify him, now it’s a game of wait and see.

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While I have not liked him being sick and having trouble with his respiratory system, I have enjoyed the peace and quiet. There haven’t been days of climbing and jumping, tearing through the house and dumping toys/blocks everywhere to trip over. I know this sounds petty, but when you live with a highly energized child day in and day out, you pray for nap time to come or his energy to fizzle just a little so you can regroup. He can’t be left alone at anytime because he doesn’t see danger at all. In anything. If he feels that the lamp – sitting on top of the desk out of normal reach-is too bright, he will figure a way to scale the desk to turn it off; it doesn’t matter if he could fall or knock other things off and break them, and possibly cut himself or harm others. All he knows is that light needs shut off.

He has managed to get the coffee pot, full, very hot and pour a cup of coffee thinking he is helping. Thank you Lord he is strong and he was not burnt or spilled anything or broke it~it only takes a second of turning your head and he is into something and you certainly don’t want to yell at him while he is holding the aforementioned pot of coffee. Moving it to the back of the counter out of reach, seemed such a simple solution, until we learned that he will find a way to climb on the counter to get to it.

The strength he has reminds me of the strength Samson of the Bible had. I know Tyson is only a few months shy of being four, but his strength is so much more. And I know that many individuals on the autism spectrum have what others might refer to as super human strength, and I have no idea why; just a way they are wired, I suppose. God knows why and he has designed all of us in His image. He gives us all unique designs and gifts to get us through life.

I have hoped and prayed Tyson would be on the mend by now, but we are still battling cough and congestion, runny nose and watery eyes and if that is not enough, he has been kind enough to share and now I am sick as well. I pray mine will not last as long as his.

When he is tired, too tired and fighting sleep, music is the one thing that calms him. But earlier he didn’t want me to play the music list, he just wanted me to sing to him. So, this is what I sang to him:” Yes Jesus Loves You, Yes Jesus Loves You, Yes Jesus Loves you-for the Bible tells me so. He gives you life, with every breath, He gives you life with every breath, He gives you life, and I’m so  blessed, Because he loves you.”

Thanks for listening to the ramblings of a tired grandma. Tyson is a handful, but oh how very blessed I am to be part of his world.

May you know how much Jesus Loves you~Right in the moment, wherever you are!

#HopeAlwaysHaveFaith

Blessings~Carlene

 

 

Love Beckons

When our daughter announced on January 1st of this year that she had become engaged, I thought things were moving way too fast and her boyfriend and her needed to slow down. They had dated over four years ago, and although I do not have anything personal against him, I didn’t feel only dating for a few months would be enough to accept a marriage proposal.  It took me some time to realize that they were serious and I could get on board or not. And then I realized that our baby girl wasn’t a baby anymore.

She has a child of her own. And many couples get married in their twenty’s so why was this so hard for me? I have many reasons, but I know the biggest reason is I want to make sure she is ready. It’s one thing to date someone and fall in love with them, it’s a whole other thing to commit to be married to them for the remainder of your life and since her father and I have struggled with that in our own marriages, you hope and pray better for your children, that they won’t face the same struggles.

Last week our daughter and future son in law informed us that they don’t want to wait to get married. They want to get married this summer, nothing big or fancy, but they don’t want to wait. Life is too short. When you know what you want, go for it. And once again I am bowled over by all of this. I can’t stop them and I can’t blame them, but I can say I am more frazzled than I have been in a long time. I’ve always dreamed of planning her wedding with her, but I had assumed I would have more than 4 months to do so. And since they are living with us and have not planned on a place of their own or have the budget for that, that is another concern. How much will their life change and how much will stay the same?Katlyn and Chris

Whilst we do not need to worry about a wedding gown, as she is not a frills type woman, there are still many things that must be figured out. A shelter has already been reserved for  a reception/party for after the nuptials, a theme for the party, and a very rough draft menu decided on, but that’s it. And now as we get ready to spring our clocks forward later tonight, I am reminded that time is of the essence.

His parents live in Florida and will be coming up and his mother will be officiating the ceremony as she holds a license for marriages in our state, but trying to plan things and coordinate details has been a little difficult. Our daughter knows what she wants, but can be very indecisive if given too many choices. Her fiance has had some input, but is leaving the details up to the bride to be and myself.

Today as we sat down to determine a rough menu of the types of foods, and planning on how to pull it off without a huge expense, I will say Pinterest has many helpful ideas and suggestions. I want this day to be a day she will look back on and smile, holding in her heart the memories of friends and family gathering to celebrate the love of two very special people.

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Lord, I ask that you grant clarity and wisdom as we move forward with these plans and that you will bless this couple and strengthen them as they move forward towards the next step of their journey. Allow the love they have to continue to blossom and give me the patience needed and peace to help them in any way I am able in making their dreams come true. In Jesus Name, Amen.

Life is short. Savor every moment you are given. Love extravagantly. Be thankful for the blessings in your life, no matter how small they may seem. Jesus Loves you~right where you are in this moment and always.

#HopeAlwaysHaveFaith

Blessings~Carlene

 

 

 

 

 

 

Here We Go Again

Today started out as any other normal day. Tyson went thru his daily routine. Roused from slumber, hands and face washed, pull-up changed and dressed. Daily Epilepsy maintenance medications dosed, breakfast and waiting on his bus. As of late, if he has ample time to wait for his school bus, he has a tendency to want to lay back down or goes around the room saying, ‘no school’. His mom had to carry him out and get him on the bus. As she returned inside, I was grateful for some solitude and rest myself.

Its ironic how unimportant rest seems when you get a call from the school informing you your child/grandchild has just had an epileptic event. And then you’re stopped in your tracks even more so when you realize the one and only car seat you own is not here,but with your spouse in the other vehicle.

We were able to retrieve the car seat and bring him home and watch him sleep peacefully for several hours.

Thankfully, we have a Seizure Action Plan in place and each member of the school staff knows what to do in the event of a seizure. I think the most scary part for me when I heard the news was does he know what’s happening?

Every single tonic-clonic seizure he has had in the past has been during the nighttime sleep hours and he’s never went from being awake fully into a full blown seizure. I’ve read that some people have no idea they are having it,while its happening, only after its over. I do not know if this is truth or myth. He has only been diagnosed since October 2017.

This time, he slept for 4 hours straight before getting up and staying awake. He tried walking from the sofa to my chair, about a foot away and his little leg muscles just weren’t ready. He looked at me as I picked him up and returned him to the sofa.

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Of course being ever vigilant goes without saying and I’m keeping a journal of his seizure activity, hoping we can identify triggers that may play a role.86f80df9a241232abc67aef3df6e9a4f

To learn more about Epilepsy, the many different types of seizures and what to do in the event you see someone experiencing a seizure event, please go to http://www.epilepsy.com.

Special thanks to all the special angels at Tyson’s school.

The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”
Deuteronomy 31:8 NIV

Jesus loves you right where you are in this moment! #HopeAlwaysHaveFaith

Blessings~