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

 

 

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~

 

Mr. T. in our World

Tyson Haircut

This is Tyson, Mr. T for short. He is one of our four grandchildren. Because he lives with us, I get to see the changes God is working in his life every single day and what a blessing it is!

Mr. T was so much stronger than many infants his age, he went from scooting around on the floor, to some type of what we affectionately call “leapfrogging” to standing and walking. Crawling never was involved in his learning to get from one place to another. It was a cross between a one leg crawl and a hopping motion all at the same time.

He didn’t verbalize like most children his age and our concerns were waved off, time and time again. By the time he was two, he had 3 words, maybe 4.  The rest of the time we relied on grunts and gestures, pictures and sometimes we gave up but he would persist until we understood him.

He walked at 10 months without assistance and by 12 months, he was running and jumping and climbing.  And again, the language delays were thought to be something he might be slower than others at picking up on, but simply because so many other areas of his development were ahead of the game.

For anyone that loves a person that is developmentally delayed or challenged, you can understand the frustration and irritation that grows when you know there is something different about your special person, but no one will listen. So you read everything you can get your hands on about where a child should be at each stage in their life, you beg for interventions from physicians, but you are put off more than once. We are so thankful that someone did listen, finally. At his two year checkup, with a new pediatrician in place, right away referrals were made and the process began to find out exactly what was going on. Audiological testing to check his hearing; speech testing to determine his level or non-existent levels of voice communications; cognitive testing to determine what he understood and didn’t. Evaluations to determine if he needed additional physical or occupational therapies and then the day of diagnosis arrived.

We weren’t really surprised by the diagnosis just concerned. Where do you go from here? He was diagnosed with Autism Spectrum Disorder, Level 2, requiring substantial support.  What did substantial support mean? Would this be for his entire life, would he outgrow needing support? Would he ever have the ability to speak and communicate?  So many questions. And a million answers, because everyone that has Autism, may have an autism diagnosis, but there is a saying in the Autism community, “If you have met one person with autism, you have met one person with Autism.” Autism Spectrum Disorder affects each individual differently and a treatment or therapy that works well for one person may have no effect on another person.

Fast forward….17 months later and he now has a vocabulary of over 100+ words. I have lost count. Does he use them in sentences or phrases? Not in ones that the world of literature would understand, but he does share with us his needs and wants.  For example, if he wants a bowl of cereal to eat-his request sounds like this “bowl-cereal-milk”.  Short and fast words. If he knows we are going to the store, he may say “maw-car-shop” and his new favorite saying when he wants his favorite candy (M&M’s). “Me-M’s”.

There are times I don’t understand the words he is trying to vocalize and when all else fails, we grab his PECS (Picture Exchange communication system) (also known as visual support pictures) and he goes through the book to convey his needs. We thank God daily that his brain has unlocked his voice and he can use words to communicate with us. We thank the Speech Therapists and Early Intervention Specialists that saw promise and hope in him and never gave up. He has been in Speech Therapy for over a year and a half and (his official diagnosis is Expressive/Receptive Language Disorder)  will continue until such time he no longer requires it.

Living with someone on the spectrum isn’t always easy, but when you love someone, you will do whatever is necessary to help them live the fullest life possible.

He also has a condition known as Sensory Processing Disorder. He is known as a Sensory Seeker that requires a lot of sensory input, he can only get by jumping, spinning, bouncing, playing hard, running fast and stopping, banging his head repeatedly and he does not comprehend the word danger or safe or stop or no when it comes to danger. He is a flight risk. An elopement risk. He is fast. He reminds me of the cartoon character “the Roadrunner” and sometime’s the “Tasmanian devil” all rolled into one. He doesn’t like the floor area to be clean for any length of time, the more mess, and chaos, the better.

But he is also known as a Sensory Avoider when it comes to loud noises, bright lights and the way some clothing or objects feel (tactile). He loves the water. Not drinking it, unless it’s in my cup and then that is a totally different story, but again, he has no sense of danger. The water could be 1 ” deep or 6 ‘ deep and it wouldn’t matter to him, it’s water and he loves playing in it. There have been a few times in the last several months, as the leaves fell from the trees and exposed the creek that runs behind our home that he would find it, on the many days he has escaped from our home. And we are very proactive and have extra locks, up high, presumably so he couldn’t reach them or open the doors to the outside on his own. However, he reminds me of an engineer. He will work at something, until he figures out how it works, to his advantage. Child safety gates used to be enough to keep him contained, but no matter how difficult they may be for an adult to open, he has figured out the mechanisms enough to open them on his own. The same with the door locking mechanisms.  He is very smart.

Going on outings with him require strategic planning. Holding his hand is simply not enough because he has great strength and fortitude and can easily wriggle out of your hold and be gone in a flash.  So now, he wears an Alert Me Band that will alert anyone if he is found running loose on his own that he has Autism and he is a runner and there are phone numbers embedded on the bracelet so we can have contact with them to return him to safety.  That’s just one precaution that is taken. We do not go on many “spur of the moment” trips or spontaneous outings, because one person may not be enough to handle him.  Going to friends’ homes isn’t something we take lightly because telling him not to touch fragile objects or climb isn’t something that he “gets”.

I share all this with you because if you know anyone on the Autism Spectrum when they are well behaved, it takes great strength for them to “hold it all together” to fit into what society accepts as normal behaviors. Most people on the spectrum require a certain level of routines and structure to function without having meltdowns and meltdowns are totally different from tantrums. To view them, they may appear the same. But tantrums are when a child does not get what they want. A meltdown is a reaction to something happening in their brain they have no control over and can’t just “stop it” or “dry it up” and move on. I think that was the hardest concept for us to learn and differentiate between the two.

So, Mr. T. has overcome a lot of delays, but he still has a way to go to be equal to his peers and he may never be equal in the eyes of the world, but he is no less because he is different. His brain is wired differently. He sees things differently and understands them differently. And he is much like any other three year old in many ways. He will push your buttons and see what he can get away with, but doesn’t always understand what he can’t get away with or why it is wrong or dangerous or bad. He knows what hot means, but isn’t afraid to touch something hot, even if he would risk burning himself. The concept of hot is lost and may never be understood. No one knows. Only God knows.

Now, I know this is a lot of information to throw out there, but he is so much a part of our daily life, that I can’t imagine not sharing his story. If his story can help others that are going through what we face every day and it helps to let you know that you are not alone when you get the diagnosis or when someone mentions something that seems foreign to you, don’t fret. It can be overwhelming. But you don’t have to walk alone. There are many support groups and organizations that are available to help you and your special person get the assistance and help they need.

Don’t be afraid to ask questions, as many times as you need to. Even if you feel like you already asked the question. And remember, you know your person better than anyone else. You see them every day. You know what you’ve tried and what works and what doesn’t. The reason it is so difficult, in my opinion for medical professionals to help is the spectrum is just that, a variety of problems that encompass more than the mind can comprehend. Some people grieve when they hear the diagnosis, other’s rejoice because they finally have answers. There is no right or wrong way to feel, just remember that the person that you loved before the diagnosis, is the same person you will continue to love after it.

I will share more about Mr. T and his journey through this maze called life because his story has just begun. He was recently diagnosed with Epilepsy and that has created a whole new area of learning and reacting and caring.

But for today I will say this one last thing. God created all of us. We are all wonderfully and fearfully made. In His image.

Psalm 139:14   New International Version (NIV)
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

Mr. T. and I look forward to sharing his journey of living with Autism. Different not less.

May you know how much Jesus Loves you~right where you are.

Blessings to each and every one of you~Carlene