Daily Life Struggles

Proverbs 15:15 The Message (MSG)

15 A miserable heart means a miserable life;
a cheerful heart fills the day with song.

 

With joy in my heart, I still struggle.  Joy comes from the Lord and no one can take that from me. I can choose to live with a joyful heart and know that I will still face many struggles and trials, but still, love and be the person I am because God has placed Joy in my heart or I can choose to live without joy and be miserable always.

Over the weekend, the fibromyalgia flared up and reared its ugly head. The constant pain that never fully leaves, but some days are so rough, that just breathing and moving, make you question if getting out of bed was the right thing to do. And knowing that if you choose to remain in your bed, how many things will face you to take care of once you arise.  Most of us that have fibromyalgia know that sometimes the best we can do for ourselves is to stay in our beds or the comfy places we have carved out in our homes. We do not have the energy to get dressed, shower, or do any extra. Getting up takes every ounce of energy just to be able to spend time with our families, and going anywhere is totally out of the question. That was me on Saturday. I showed up, in my nightgown and I stayed in my nightgown all day. I KNEW I was not going out into the cold for any reason and I saw no point in causing myself more pain to get dressed simply because that was expected of me.

I have dealt with FM for 10 years. And for the past year, it has been manageable. But for the past several months, I have noticed since stopping the natural supplements I was using, my inflammation throughout my body and the pain levels have been increasing again.  I choose to work through my pain in prayer and time with the Lord. Limiting what I do. Staying in more than going out and while dealing with my own health battles, helping our grandson through his.

He has come a long way in the past two years since being diagnosed with Autism Spectrum Disorder. He talks now. He is becoming very independent, but also very demanding. He is four. When he wants something, he wants it now. And even though he asks for something correctly and always says please, he does not understand when he is told no.  He tries again, to word it differently or even smile and say please and sometime’s the answer is still no. I know it must be confusing, because he is being polite, and saying please, but simply does not understand that even if you do everything right, sometime’s the answer will still be no.

So imagine being in such excruciating pain, that you do not want anyone touching you; let alone a four-year-old jumping on you, bouncing into you, climbing on you, but you don’t dare say no because you don’t want to make him feel unloved. He doesn’t understand what it means when I say “that hurts” or “please don’t do that”. And he loves to give big hugs, he loves deep pressure. He loves climbing behind me on the sofa and me leaning back on him, but all I want to do is cry because every amount of playtime for him is pain time for me. But I do it because this brings him comfort and joy. Love is powerful that way.

I left my home on Sunday to go to church. I needed that more than I knew. I didn’t realize how much I missed the interaction with others until I was there. I interact with people daily through social media and texting, but it just isn’t the same as being able to see smiles, receive hugs and just be loved on for simply being you. By the time, my husband and I arrived at the church with our grandson in tow, we were both emotional. My emotions were creeping near the surface, ready to spill out in the form of tears. My husband was frustrated because our grandson is a runner and any chance he gets, he bolts. Even though he had his safety harness on, and my husband was holding onto the strap, he wasn’t ready to go on a run with him.

And Tyson has learned that if we are trying to pick him up from the ground, and we want him to stand, all he has to do is bend his knees when we are lifting him and he becomes heavier to maneuver.  He is big for his age. He’s four, but weighs 50 pounds and is over three and a half feet tall. Carrying him for any length of time is strenuous to us “old” folks. Wrestling him into his car seat so we can go anywhere is an everyday battle. Once in the seat, he does ok, but getting him in the seat is a battle, every single time. And he has to be in a five-point harness because otherwise he would be climbing all over the vehicle and exploring.  Safety and danger are words he does not understand. He always wants to sit in a regular seat with just a seatbelt but we know that won’t happen until he is much older.

Walking into the church lobby, as we were greeted, the tears started welling up, and I just didn’t have the strength to hold them back or hide behind a pasted-on smile and pretend everything was good. I was tired. Tired of my own pains, tired of always struggling with Tyson when we need to leave the house. Tired of always being the positive one. We all have our breaking point. Yesterday was mine.  I know the devil will do anything he can to try and break me. For the past three weeks, I have opted not to leave the house on Sunday. I’ve made excuses, stayed home, watched our church’s live stream of the sermon and remain isolated because that was so much simpler than struggling with him to go anywhere. In doing that, though, I lost out on connecting with other people and being surrounded by people that love us through all our struggles; people that are compassionate and caring and offer to help in any way they can.

Sailing Life

I think for most of us that live with autistic individuals it’s not that we don’t welcome the offers of help or hope that someone will be willing to help, it’s that we don’t know what kind of help to ask for. Our home is “proofed” for him. We have specialized gates, taller than him to keep him safe and confined to an area of the home where there isn’t danger. We have learned not to have “pretty” things that he can break. We know if he is outside, he must always be (1) holding your hand tightly (2) have his safety harness on (3) be secured in his specialty stroller with a vest and five-point harness or (4) be in a fenced-in area where no escape is possible. We know he has food aversions and sensitivities. We must always have his emergency seizure medications at the ready and available. And the list goes on. Going anywhere, we must still take a change of clothes bag and appropriate necessities, because he isn’t potty trained yet. And if someone opts to take him for a few hours, what if he hurts himself, has a seizure, breaks something, gets sick. Yes, he is verbal now. Can he communicate everything he needs to? No.

The one thing I can offer to those willing to ask: please don’t stop asking. For me, it’s hard to ask for help for anything for myself, Tyson or our family. But I am learning to accept it. Accepting prayers from others is easy. I love to pray for others too. Accepting offers of helping with Tyson is getting easier, but I know how challenging his behaviors can be and I know that we never know from one moment to the next what he understands and what he doesn’t, but we do know he is very smart and intelligent in many ways. And letting go and accepting help may not be in my nature, but being part of a community of people that love us regardless of our challenges does truly make all the difference in the world.

May you know how much Jesus Loves You~right now~right at this moment and always.

Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Blessings until next time~Carlene

 

 

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In the Midst of it All

This week has been emotionally exhausting. For several years now, as we live with autism being part of our everyday lives and trek through the ups and downs, I have been sharing how tantrums are not the same as meltdowns. This week has taught me that no matter how much I try to share a glimpse of what a meltdown is or isn’t, there is no way that you can possibly teach others what one is unless they have personally witnessed or experienced it themselves.

raging fire

I can educate others on the differences. I can post pictures on the autism page I manage on Facebook. I can tell others what we go through, but until you weather the storm and watch them unfold, there just isn’t a way to truly get it. I never did. I thought I understood. I thought I knew even after reading different articles, posts from others going through the same thing, hearing about them, but there is no way for anyone to grasp the degree of how emotionally and physically exhausting they are unless you experience them firsthand. And truly, I pray daily that I never have to go through one again.

I will. We will. It’s inevitable. I know as Tyson gets older and learns a coping mechanism and self-regulating strategies, along with all of us learning what the triggers are and techniques to help him get through them, they may lessen and maybe even stop.

Today we are on our third or fourth day in a row of multiple meltdowns per day. The one commonality is that he is happy and playing and wants to do something and he is told, “no.”  Telling him, “no, not right now” or “no, you can’t have that (fill in the blank, it could be a toy, a snack, whatever it is at the moment)” and it starts out as a simple child tantrum.  He becomes angry and cries. And we ignore him, hoping he will settle down and go on, realizing that just because he didn’t get what he wanted, crying and throwing himself on the floor isn’t going to make it so. But for him, once he starts crying, it sets off something inside of him where he becomes very intense and inconsolable. No amount of trying to hold him close and hug him or redirect works.  In these moments, he is lost within himself. As the meltdown increases, his behavior goes from simply crying out, not getting his way to hitting, throwing himself on the floor, running and banging into the walls, furniture, others, trying to bite you anywhere he can to inflict pain, pain that he is feeling, I presume.  And the only way to get him to help him calm down is to forcibly hold him and hug him tightly, but beware, because then he is closer to you and the headbutting and biting are easier to do.

When he was smaller, holding on to him as he stiffens his body or tried to wriggle out of your hold on him, was harder for him to do; now as he as grown (3 1/2 feet tall and 50 pounds), he is a force to be reckoned with.  He has always had superhuman strength, but when he is in the midst of a meltdown, it is quantified. I joke with others that I don’t need to go to the gym for strength endurance because I have my own little personal trainer that helps me with that.  We can’t leave him to flail around on the floor because he doesn’t care in those moments if he hurts himself or hurls items at us. And that is not acceptable. We also know that yelling at him to stop is futile. By this time, it’s not that he isn’t listening to us, he’s past that point and isn’t hearing us.

Jesus gives me the strength to hold onto him, usually facing away from me, because it’s harder for him to aim his head toward mine. As I become the human papoose to restrain him until he starts to wear down, I silently weep, because I don’t how many minutes it will take to reach him. When he finally starts to relax and cries out for me or his mommy or papaw to hold him, we know he is calming down. He is finally back with us.

He can’t be put in timeout, although this has been suggested because he does not sit still for any reason. So, earlier today I put myself in timeout. As he sat with his mommy, after melting for 30 minutes, I withdrew from the room, just around the corner, locked the safety gate, and sat on the stair steps out of his view and I wept. I prayed through my tears.

I know Tyson is a gift from God. He is truly a blessing in our lives. Even in the meltdowns and they have been more than I care to admit lately. I know that there is a reason for everything that happens in our lives. And I also know that being an autism family, Tyson doesn’t need fixing. He isn’t broken. His brain is wired differently than ours and we expect so much from him to live in our world and conform to the world’s standards of how he should act and behave. I know that he sees things differently and I love that about him, he has taught me so many joys that I take for granted. I just always expect the Sun and Moon to be shining in the sky at the right time of day, but each time he sees them, his heart is full of gratitude that God gives him the gift each day.

Zechariah 13:9 New Living Translation (NLT)
9 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.’”

As we walk through his meltdowns, I liken it to the firestorms of life that God allows us to go through so He can refine and purify us into the people He created us to be. Yes, they are painful. No, they are not pleasant for any of us. But they are necessary. Everything each of us experiences during the midst of these teaches us to be a little more compassionate, a lot more understanding and out of the ashes, love for one another rises.

May you know how much Jesus Loves You~right now~in this moment! Jesus can turn any mess into a message of hope. #HopeAlwaysHaveFaith

Blessings to all~Carlene

 

 

I Often Wonder……

Isaiah 44:3 New Living Translation (NLT) 3 For I will pour out water to quench your thirst and to irrigate your parched fields. And I will pour out my Spirit on your descendants, and my blessing on your children.

I often wonder if the answers will ever come. I often wonder what goes on in your mind that keeps certain things just out of your grasp and I often wonder what you see that makes you gaze off in the distance as if something has caught your attention that only you can see.

I wonder why music makes you happy, but instruments playing cause you to cover your ears and bury your head.

I wonder what happens when everything becomes too much and what is the one trigger that sends you into a meltdown. Is it something I can control or remove from your environment or is there any rhyme or reason as to why it happens at all?

I wonder why spinning around and around brings you the most amazing release and joy, but makes me swoon almost to the point of collapse.

I wonder what it was like at the beginning of your life when you couldn’t communicate, did you think we didn’t care? I hope not.

I wonder what it feels like in your head; do you hear everything in the same tone? Do you hear all the noises at once, because I know that processing information for people diagnosed with autism spectrum disorder, many have a difficult time processing information or input you hear and you may need more time than most people to answer questions or respond appropriately.

I wonder what is happening within you when you run and jump and slam toys and objects into the floor; when you throw things without thought as to what can happen. Someone may be hurt or something may become broken, but all you seem to know is you have to throw it, you need to do it to make you feel better.

I wonder what happens when everything becomes too much, and you cry and whimper, because they are no words to describe or explain the overwhelming feelings you have and sometimes no amount of hugs or deep pressure helps you feel better, only crying yourself to sleep helps.

I wonder what happens to you and how your brain is affected when you have a seizure. Will those seizures change who you are? Will they affect your thinking processes? No one seems to have an answer.

I wonder why vacuums and ceiling fans are your obsession. I can’t begin to understand, but I know they are. I have heard this is normal for people with autism, just like when you line things up. You can be so rigid with that, but you love the chaos of toys strewn everywhere and it drives me crazy.

I wonder if you will ever understand the danger of running into the street or running toward water without one of us with you.

I wonder if you ever get tired of me asking you to repeat the same word you just said and if you understand I am only trying to help you communicate more clearly.

I wonder if you know who Jesus is. I wonder if you like going to church because you get to spend time with other children, your age and learn about Jesus, or if you just like getting out of the house and have some freedom.

I wonder why you bang your head, and even though it hurts, you do it again and again.

I wonder if you will ever to be able to read on your own. Or if you will always rely on pictures to understand.

I wonder if you will ever be able to live on your own, or if you will always need the support of family.

I wonder why you have night terrors. I wonder what causes them and why you must experience them because you already deal with so much and you are only four years old.

I wonder if you will ever be able to be outside without wearing a safety harness as we go shopping or to appointments. I wonder if you know we only do that so you can have a little bit of freedom, but we can keep you safe.

I wonder if you will ever take your Epilepsy and ADHD medications independently or if we will always have to hide them inside your liquids and foods. I wonder if you will always have to take medications to keep your brain from misfiring and your hyperactivity under some sort of control.

And while I wonder all of these things, there are many ways that you amaze me every single day.Tyson Vacuum image

I am amazed at how much your ability to communicate has improved over the last couple of years and how you work over and over to learn new sounds and words.

I am amazed that when you started preschool last year, you were considered nonverbal and only had 24 words under your belt, but by the end of the school year, you were speaking in 5 Word utterances.

I am amazed that you love with such a huge heart and tell me every day, without prompting, that you “wuv” me.

I am amazed that at times, you can sit still and remain calm, if even for five minutes. That’s a huge success.

I am amazed that if we show you pictures marked on a calendar you understand how many days you have to wait for something to happen.

I am amazed that you know how to use the potty when you want. It isn’t every day, but someday it will be.

I am amazed that you go to Speech Therapy every week and you improve on what you learned the week before. And this is part of our routine. Every week for two years.

I am amazed that you try to write the first two letters of your name but recognize all of them.

I am amazed that you know how to count from 1-10 on your own and are learning how to go onto 20.

I am amazed that you can recite the alphabet and can also recognize letters, even if they are not in any particular order.

I am amazed that you know what it means to put things in a sequence and you do it without error.

I am amazed that you love foods that are good for you. Tomatoes, cucumbers, strawberries, watermelon, bananas, apples, vegetables, yogurt and cottage cheese.

I am amazed that you can name almost every vacuum made by simply knowing how they look and are designed and how impressive it is when we are out in a store and you can point them out to me.

I am amazed that you like the taste of my coffee, once it has cooled off.

I am amazed that you never give up when you want something. You are almost relentless in asking for it, even when the answer is no.

I am amazed that you are willing to share your toys, even if you don’t want to.

I am amazed at how much you love animals and are not afraid of them. I shouldn’t be amazed by this, because your mom loves animals too.

I am amazed that you are always willing to try and you don’t give up easily.

I am amazed that when someone doesn’t want to do something, you gently remind them to try.

I am amazed that you can watch ceiling fans and fidget spinners spin for hours and you love this. Who knew something so simple could bring such joy?

I am truly blessed that you are in my life, Tyson. You have taught me many things. Some I have learned by trial and error; in many ways, I have a ways to go. But you never give up on me. You bring such joy to my life. I cannot imagine my life without you in it.

Every condition and disorder you have been diagnosed with, one would be more than enough for anyone to handle, but you deal with five. So no matter how many times, I want to cry and feel sorry for what you have been dealt, I look at how resilient you are and I know that because you live with these, I do too. I’ve learned to look at life just a little bit differently and realize that although these disabilities may afford you some extra help, that they do not mean you can’t. You just do things differently.

I love you; I love you more; I love you the most; I love you forever! This is what we say to each other before bedtime. He repeats much of what he hears but will say I love you too, on his own.

*I wrote this for our grandson, Tyson. He is four years old. Someday he may be able to read it or have it read to him, but I want him to know that although we never expected to have a Special Needs grandson living with us and being a part of our everyday life, challenging us to think outside the box of “normal parenting” if there is such a thing, that without a doubt, he has opened my eyes to the world around me. He has taught me so much in these last four years, more than I could have ever learned in a book.

I am thankful to our Heavenly Father that he felt he could entrust Tyson to our care, along with his mom. And I pray daily that we utilize every opportunity to help him learn and thrive in the world we live in.

May you know that Jesus loves you~right where you are right now and always.

Blessings, Carlene

Four Years Already!

Romans 12:11-13 New International Version (NIV)
11 Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. 12 Be joyful in hope, patient in affliction, faithful in prayer. 13 Share with the Lord’s people who are in need. Practice hospitality.

Three days ago, Tyson turned 4. It amazes me how time seems to go so fast the older I get. I remember the moment he entered the world and what great joy he brought to our hearts! To hear his first cry and to hold him close and think of all the great things he would accomplish in his life, dreams you have for your grandchild; the same kinds of dreams you have for your children. Dreams they will be healthy and happy and know how much they are loved. That adversity and obstacles will not cross their path and if it does, they will be able to cope with those and continue forward.  I remember thinking how perfect he was as I held him that very first time in my arms and thanked God for this beautiful life he was entrusting to our daughter and us to nurture and love and teach. Little did I know that not only would he face many challenges near the early part of his life, but that they would also change the way I viewed the world and allow me to see pure and simple joys in so many things I had taken for granted for so many years.

At birth, he was almost 10 pounds. He didn’t look like a brand new newborn, more like the size of a 2-3 month old and most of his newborn outfits he didn’t even fit into, but that didn’t matter because he was healthy, and appeared happy and slept through the night. Yes, we had to wake him to actually get him to do his feedings. He loved being swaddled in a blanket; the tighter the better, on one condition though, his arms could not be trapped in that wrapping.  They had to be free. He still loves to be wrapped tightly in a blanket or sheet. He loves the deep pressure that he needs for his sensory needs.

Four years ago, I had no idea what terms like sensory needs or sensory seeker/avoider meant. but I do now.  And stimming, I thought that had to do with floral arrangements, not something that a child with autism does to calm themselves. And what the heck was PECS? Did that have something to do with bodybuilding??? Nope. PECS is a picture exchange communication system for people that do not speak or can’t speak clearly enough for you to know what they want or need.

When you have a special needs child, there are so many terms that seem so foreign and so overwhelming that you wonder if you will ever make sense of them. You wonder how in the world am I supposed to remember all this and how do I help him make sense of it all. But God knows what we need and he places people in our lives to help us make sense of it and get us through our journeys. No matter what our journey looks like, He always makes a way.

At 26 months, Tyson was diagnosed with Autism Spectrum Disorder, Level 2.  I had no idea there was such a thing as Levels for individuals with ASD and was level 2 a good or bad thing? Click here to read the difference in the levels and what type of supports need to be in place to help each person. There are three levels of ASD. Level 2 under the DSM5-Diagnostic Manual means he would require substantial support. He was non verbal. Made very little eye contact; and did not play appropriately with many toys. He was happy doing things on his own without interacting with others, but has always been very empathetic and loving, especially if he noticed a family member was teary eyed or not feeling well. He would hug you and pat you on the back, as if to say, it will be okay.

As the months progressed, after his diagnosis, we had many other evaluations done to determine if the reason he wasn’t verbal was because of a hearing disability or a speech impairment. His hearing was fine, so that meant either he didn’t know how to form words to speak or he didn’t have a voice, but that didn’t deter us. He has been in Speech Therapy for almost two years (in August we will hit the two year mark). And it has been amazing to see him learn how to tell us what he wants through the use of PECS, simple sign language and short to the point words. Most recently he has been putting 4-5 words together to express himself! His utterances may not be grammatically correct, but it is music to our ears!!

For him, his sensory needs are many. Some we are still navigating through and learning. He received a diagnosis of Sensory Processing Disorder in October of 2016 from an Occupational Therapist that observed him and listened to our concerns/more questionnaires to fill out and he is definitely a sensory seeker.  Seeking out ways to get the input his body needs in ways that aren’t always safe or acceptable. He will climb on anything he thinks he can, even if it is not something any neurotypical child would consider doing. He plays hard. Danger and unsafe don’t mean a thing to him. He knows that my coffee cup is hot, but doesn’t understand that if he spills it, he could get burnt. No comprehension between what hot is and how it can hurt. He loves to bang his head on the floor, into the wall, on the back of a chair and even though he cries, the tears only last for a few seconds and he will do it again. And he has always done this for as long as I can remember. He LOVES water. But water is always a danger, because he doesn’t understand that you can’t go under the water and stay there. The street to him is a big place to run and be free, and the list goes on.

As a sensory avoider, he covers his ears when there are loud noises such as a vacuum cleaner or hair dryer turned on, but he can watch videos cranked at full blast, at a spring concert for our granddaughter the singing did not bother him, but the band instruments made him bury his head, because they were too loud. Every day is an adventure, because you never know what noises will bother him and which will soothe him. And bright lights or a very sunny day and he will cover his eyes, but he doesn’t like it totally dark either.  He has learned the difference between the sun and the moon. When we can’t see the sun anymore that means the sun has gone to bed and the moon lights the night sky. When the clouds are out at night and the moon is hidden, he searches to see where it is and he doesn’t like the explanation that the moon is hiding. Sometimes this alone can cause him to have a meltdown.

Stimming for him is a way for him to release when everything becomes too much in his brain. And just as ASD is different for everyone, stimming is different for everyone too. He loves to spin in circles until he gets dizzy which can seem like that will never happen. And when he finally stops spinning, he will start all over again. He laughs and smiles when he does this. And he loves to jump. On his indoor trampoline or a mat on the floor or when he grasps your hands and wants you to hold them while he jumps up and down over and over again.  Occasionally he will walk on his tip toes for a while and I have yet to determine if this is a form of stimming or just a part of who he is.

In July of 2017, he received an official diagnosis of MERLD. Mixed Expressive Receptive Language Disorder.  

Mixed receptive-expressive language disorder is diagnosed when a child has problems expressing him-or herself using spoken language, and also has problems understanding what people say to him or her. Follow the link above to learn more in depth information. Being in Speech Therapy, once a week for the past two years have helped him to expand his understanding, but there is still so much more for him to learn and understand. He also receives speech services through our local school district once a week as part of his IEP (Individualized Education Plan) for the integrated preschool program he is a part of.

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He relies on visual supports at school and home to help him understand what tasks he needs to be doing and how to accomplish them. Or when we need to prepare him for appointments or outings, we can show him with pictures and he gets it, but tell him and he may or may not understand. And some of the visual supports need to be broken down into steps until he learns them.  It doesn’t seem like it would be a big deal, until you try to teach him something new and he just wants to try and figure it out on his own, but has no clue how to do it. Steps are important. For example let’s say we want him to wash his hands. When he first learned to do this independently, he thought you just got your hands wet and that was it.  So Step 1 – turn on the water (with supervision or the bathroom will be flooded in no time-no joke) Step2 –  test the water-is it too hot or cold?? Step 3 – put your hands under the faucet and get them wet. Step 4 – put soap on your hands. Step 5 – rub your hands together so the soap gets all over them. Step 6 – Rinse the soap off your hands with the water.  Step 7 – turn the water off. Step 8 – dry your hands. Step 9 – put the towel back. Step 10 – all done. (No more playing in the water!)  Now for you and I we just simply wash our hands. But until he learned those steps he had no idea what it meant to wash his hands.  And the school and us, here at home, still have to remind him that he cannot play in the water or turn it on without help. We will continue to work on that and he may get it one day or he may not, because as I said before he LOVES playing in water.  Imagine having to do that for everything you want to teach him, that’s  just one part of his MERLD. A very small part, but with huge skill set learning.

In October of 2017, after having two unprovoked seizures, he was officially diagnosed with Epilepsy. Since then he’s had many seizures and we’re hoping the anti-convulsant meds he is on will hold the seizure activity at bay. His meds are in liquid form which he gets three times a day in his juice or milk. Sometime’s he is wise to it and will comment how “yucky” it tastes; and I will suggest that we just need to shake it up and mix the juice. The power of suggestion has been enough so far and he will take it. Out hope is as he becomes older he will be able to transition to tablet form of the medications.

Each time he has had a tonic-clonic seizure (formally known as grand mal seizure) he has no idea what has happened only that he is extremely tired and sleeps a lot. He also has absence seizures, where he appears zoned out or staring at something no one else can see. The staring episodes have happened since infancy,but EEGs never showed any seizure activity so we had no idea to be worried or concerned. And the EEG/MRI done in September did not show any activity during the testing. There is no rhyme or reason to his seizure activity. He is not left alone because it is not safe for many reasons, epilepsy being one of those reasons.

And yes, there are many days I’ve thought how much more, Lord? How many more trials will he face, but I know that Jesus loves Tyson as much as he loves all His children.

Right now, Ty doesn’t understand and comprehend all of his medical and developmental delays, only that he goes to the hospital to see his doctors.

When he first went on the medications for his seizure activity, we noticed a shift in his happy carefree self. His meltdowns increased and his behavior became more aggressive and for lack of a better term, angry. His appetite that had once been healthy and hearty became almost birdlike. It turns out that many of the AED (anti epileptic drugs) medications used can have side effects such as the ones we’ve been experiencing and thru trial and error, it may take several different ones to find the right one.

He’s always been hyper, but never so bad that he would be too busy to eat or sleep and bouncing off the walls or invading others personal space such as his peers at school. And because he just started preschool this year, a baseline of data needed to be established before seeing if ADHD played a role in the hyperactivity. After consulting with his teachers and medical specialists, ADHD was confirmed in March of 2018. The seizure meds had seemed to exacerbate the symptoms.

Even through all 5 diagnoses, he is still  full of wonder and adventure, our little blessing.  Yes, some days are very challenging and difficult to find joy when looking on the surface, but if you take the time to get to know him and see  the joy in his eyes and the love he has to offer, he isn’t any different than any other toddler. He is pretty amazing that he holds it together so well and many days when I get tired and wish he didn’t have to follow a medication schedule or have extra therapy to help him learn and blossom, I am forever grateful he has treatments that help.

Two years ago, he was nonverbal and. we had no idea how much he understood and/or if he ever would. Now he plucks dandelions out of the yard and with beaming pride brings them to me to smell and keep!

I will continue to advocate for him. I will continue to educate myself, our family and friends on every special need he has, but most of all, I will continue to thank God that HE blessed our family with this bright eyed babe four years ago. Our life is so much richer.

Thank you for continuing to follow our journey and being so supportive and encouraging!

May you always know how much Jesus loves you~right where you are in this moment.

Many blessings to all of you~Carlene

#HopeAlwaysHaveFaith

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

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