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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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.

TY AND ME

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.

RM DRAKE LOVE QUOTE

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

 

 

 

 

 

 

Forgive

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This week has been a lesson in forgiveness for me. Our grandson who is inquisitive , strong, funny, hyper and a autistic has tested my patience and mercy.

At the beginning of the week, he broke my mobile screen near the speaker and spider cracks down my screen, but thankfully it is still usable.

Tonight, my laptop screen was not as lucky. I’m at a loss, as both items will need replaced, in time. Living on a fixed income doesn’t afford the luxury of going to the store and buying new. He thinks, if something is broken, we will go shop. So for now, as long as my phone holds out, I’ll be posting from it.

As I sat and cried of the loss of data that I have no idea how to retrieve, family photos, etc. God reminded me that life is precious.  As our little one cried and kept repeating sorry, I knew it wasn’t intended and I knew holding onto anger would surely give the devil a foothold. Forgiveness was easy because I love him.

Tomorrow is a new day, a fresh start, a chance to do over things I could have done better today.

The Lord’s mercies are new every day. Mine should be too.

May you know how much Jesus loves you-right now in this moment.

Blessings ~Carlene

Gift of Love

James 1:17 New International Version (NIV)
17 Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.

 

As I sit here this morning, watching the snow fall outside my window, it reminds me of how the Father covers us.  When we come to know Jesus Christ and accept Him as our Lord and Savior, he covers us by the sacrifice of his blood on the cross. And we are made pure in his sight, white as snow.

I’ve always said I don’t like snow and I have to confess I love watching it fall outside my window, I simply don’t care for the cold temperatures associated with falling precipitation.  Earlier, gazing out my window, I saw a muddied yard, with brown, lifeless trees and now I see white all around, and everything appears pristine and fresh.

2 Corinthians 5:17 New Living Translation (NLT)
17 This means that anyone who belongs to Christ has become a new person. The old life is gone; a new life has begun!

No matter who you were or how your life was before Jesus, you are given a new life, one held together with love, mercy, and grace. Your sins are covered by the blood of the Lamb, similar to how God covers the muddled, messy ground with freshly fallen snow.

There is not one of us that can claim to be Holy or Righteous without the Cross. Jesus bore the sins of the world so we could be reconciled to God. When sin entered the garden, it separated us from God. With Jesus’ death on the cross, it gives us atonement for our sins, once and for all. When we come to Jesus, repent of our sins, and choose to follow Him, we are considered children of God. Jesus is the bridge that brings us back to a Father that sin keeps us from.  Living a life as a Christian isn’t easy.  He died for us so we could live life abundantly.  He didn’t promise there wouldn’t be problems, but in life and in death, he showed us how to live and overcome hate.

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Live your life with purpose, choose Joy that only God can give. Accept peace and hope as the things we seek and cling to. Live passionately, love extravagantly, Choose life. We are only given one chance to get this right. Choose to love others, help those that need help, pray and expect miracles. Leave a legacy.

May you know how much Jesus loves you~right where you are, right now!

Blessings~Hope Always, Have Faith

Carlene

 

“Go Away!”

Go Away is a phrase we hear all the time when Tyson doesn’t want to do something.  It’s easy for him to get his point across, instead of trying to put the words in an entire sentence.  My husband and I heard those words this morning, as we were working on getting his coat on for school.

Tyson has been sick for over a week, not with the flu, thank goodness, just a nasty cold that didn’t want to leave. So, for him, having a structured routine that had become anything but structured the last week, he was used to staying at home and sleeping much later in the day.

His vocabulary is getting bigger every day. For that, we are so thankful and praise the Lord daily for opening up his mind to be able to put his thoughts into words, even when he shouts and kicks and struggles to get away and says, “go away!”

Two years ago, he only had two words. Two. Ma & Da. And the only person he has ever called ‘da’ is his papaw.  Now, he addresses his mother as Meem, I have no idea how that came about, except he has always called me Maw (for mamaw) and there were times he would say mom, to his mother, but then one day, wanting to get her attention, he shouted “Meem,” and it stuck! His style of communicating is music to our ears, even though they are in short one-three word sentences. And the hardest part is understanding him because he struggles with middle and ending sounds of words. But, I have no doubt, as we continue to work with him, through his Prompt trained SLP (Speech-Language Pathologist), his wonderful Play Project Developmental Specialist and at home, those sounds will come, eventually. We still use PECS (Picture Exchange Communication System=Visual Supports) and occasionally sign language, along with his voice.

He was amicable to getting dressed and even eating breakfast, which is usually a struggle this early in the day. but when it came time to put his coat and hat on, the battle ensued. Most people can’t imagine it would take two grown adults, one holding onto him for dear life, while the other works to get the coat on and keep it on, long enough to get it zipped and snapped  He was determined he was not going to school. As he slid off my lap, onto the floor and Mike trying to keep his arms in his jacket, asked Tyson, “don’t you want to go to school and see your friends?” He replies, “no friends, home.” Five minutes before the bus came, he was in his coat and hat, but still saying, “go away.”

As he begrudgingly took da’s hand and walked out to board the bus, I realized it’s like starting all over again. When his routine is disrupted, it usually takes a week or two to get back in the habit of everything and how hard that must be. It’s almost like an adult that gets to go on vacation or take time off from work, getting back into the swing of things isn’t always pleasant when you would much rather stay curled up under the covers.  I am thankful that he is feeling well enough to go to school so he can get back into the game of learning, but so we can have a short break. TYSON BUS

We love this little guy, but we didn’t plan on having a small child to care for at this stage in our lives, so even a short 3-hour respite is welcome!

Every child is a gift from God. Every child is a blessing. Tyson has many struggles that at times can seem insurmountable, but we get through it because we love him. 

Until autism became part of our lives, I never fully understood the impact it can have on a family unit. It changes your perspective on so many things, but the one thing that it has done for me is to remind myself that everyone on this earth has struggles and challenges. Many are unseen.  I can’t see the sensory processing difficulties he has until he starts jumping off of furniture and climbing all over the place, I don’t realize he is missing something until he wants to be tickled and then laughs and gasps for air, says “go away,” and in the same breath, says “more tick”. He is overcoming his tactile challenges with PlayDoh and sand, and will even eat pasta as long as it doesn’t have cheese on it. I thought every child loved mac-n-cheese!  He loves cheese and he loves elbow macaroni, but not together. 

I can’t wait to talk to him about his day. I do most of the talking. Asking yes or no questions to find out what he did in class. And I am sure his first day back, those questions will have to wait until he wakes up. I know when he gets home, he will be asleep on the bus and we will carry him in and lay him down and enjoy just watching him sleep. It is peaceful in these moments. But once he is awake, then the fun will begin. Jumping, climbing, dumping his toy bins, creating what seems like a danger zone to walk through, but he loves having all his toys surround him. I think it makes him feel more connected.  If you are a parent or caregiver of someone with Special Needs, take a break when you need it, don’t give up hope, celebrate every single accomplishment they make and know you are not alone in this. All of us need one another to make it through this thing called life.

Heavens Very Special Child 2

 

Romans 5:4-5 The Message (MSG)
3-5 There’s more to come: We continue to shout our praise even when we’re hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience, in turn, forges the tempered steel of virtue, keeping us alert for whatever God will do next. In alert expectancy such as this, we’re never left feeling shortchanged. Quite the contrary—we can’t round up enough containers to hold everything God generously pours into our lives through the Holy Spirit!

 

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

Blessings~Carlene