For the past 55 days, or 7 weeks and 6 days, or 1 month and 24 days….we have been forced to slow down. Spend time with our loved ones. Isolate ourselves from the world. And while, it may not seem like a lot of time; trust me it is when you have a child with special needs and the only way they cope and function is with structured routines daily.
I sit here with tears streaming down my face and wonder if we will ever have a peaceful day with Tyson.
I love him but I hate when he destroys things just because. There is no talking about why we don’t break things.
This is the part of adhd and autism I hate. I hope as he grows older it will get better.
I’m tired of this.
Today, I’m praying thru the tears asking God what I am supposed to learn from this~I haven’t a clue right now.
I want our happy go lucky boy back. I miss him.
May you know how much Jesus loves you. He is always available-no appointments necessary.
Jesus can turn any mess into a message and any test into a testimony. #HopeAlwaysHaveFaith
The Lord is MY helper, MY portion, MY everything. No matter how dark things have been in my life, the one thing, many times the only thing that gets me through it,is Jesus. I love that not only is my Savior, my Creator and the Omnipresent I AM, he is also my friend and loves when we talk and when we sit together in the stillness.
I find myself daily apologizing to my family and friends, but most of the time, my family for the bone-tired feelings I get. Some days I only want to rest, and do absolutely nothing else. These are the days where as soon as I sit or lay down, I’m out. Mid conversation some days. Insomnia is now part of my new normal and I do not like it at all. But, until I can figure how to beat it, I just have to live with it.
My thoughts are many people are of the opinion, you had sepsis. You survived. That’s great. Let’s move on. I wish it was that simple. Truly I do. But many days it is not. It is always at the forefront of my mind, what happens if I get it again. How will it affect me then? And for many of us that have lived to tell about having Sepsis, Septic Shock, Septicemia (the terms are interchangeable) it is a reality we face daily.
My maternal grandfather died of sepsis. At age 14 I knew it was some type of blood poisoning, but that was all I knew. After having survived it, I know that any infection that we have in our bodies, can get into our bloodstream and our system starts shutting down and going into organ failure as a response to the infection. Sepsis is a life-threatening condition that arises when the body’s response to infection causes injury to its own tissues and organs. And it does not discriminate. Anyone can get it. For more detailed information about Sepsis, visit The Sepsis Alliance.
The day before this all happened. Before I was in a near-death state, nothing seemed out of the ordinary. I stayed up till 10p.m. turned in for the night and that’s when life hit some pretty big bumps, but I didn’t realize it then. I became cold, so cold that no amount of blankets was helping to warm me up. I shivered for several hours, determined that whatever was happening was just a really bad cold and it would be better by morning. I had chills like this in the past and lived. I was up and down to the bathroom several times, but that didn’t seem out of the norm for me, so I just kept hanging on. The next day waking up, I was still cold, but not freezing. I assumed I must have had a fever and it must have broke and that was the reason for no shivering chills. As I descended the stairs, I kept thinking I felt like “death”. I knew whatever kind of bug it was, it would eventually be okay. How little did I know, I was closer to death than I would have ever imagined.
I recall the paramedics taking me to the cot and when they lifted my legs on the cot, the pain was unbearable. I screamed in response to the pain, having no idea why that hurt so bad. It seems cellulitis had appeared overnight and my leg was severely inflamed. I still had that elusive fever I thought I had shaken and my blood pressure was seriously low (60/40). The next five days were a blur. I can recall bits and snippets but full days are lost. I remember being moved from the step-down unit to regular room and the fear that I would lose my leg if they couldn’t get the infection under control.
I had lived through so many cellulitis infections that I had taken for granted how serious it could be and was. The pain after those first 5 days in the hospital was something I hope I never have to endure again. Therapists would come in the room and want me to try and stand/walk on it and I felt like a baby because I couldn’t. I wasn’t one of these people that whines when I am in pain, very often. I have lived with Fibromyalgia for over 10 years and I have learned to deal with pain every single day, but this pain was something I wouldn’t wish on my worst enemy. My total days in the hospital was only 14. I know two weeks seems like a lot, but not when you have Sepsis/Septic Shock. The miracle is you survived. What the doctors fail to tell you is that your life will never be the same again.
Here I am, Post Severe Sepsis 7 months and 6 days and while I am thankful for the Lord keeping me here and alive, I miss the old me. I NEVER had panic attacks or any type of anxiety that couldn’t be calmed by the Lord and His Word. My memory was rock solid. I slept. Insomnia and I had never met. Fatigue, I thought I knew what that was, that’s part of the fibromyalgia too, along with brain fog. In that sense, knowing what it was and living with it for the past 12 years prepared me. I didn’t have to wonder why, in mid-sentence or thought I would just forget. I simply have no idea what I am doing or why and most days I just have to let it go. Trying to remember makes it worse. It reminds me of what I have lost.
Losing my short term memory is like watching my grandmother and father in law grope their minds when they were dying with Alzheimer’s disease. I hate the feeling. I despise asking family members to remind me what they might have just told me 10 minutes ago because I need to write it down or put it in my calendar. And some days, mid-thought I can’t speak what I want because of the word being just out of my reach. It is so frustrating to me. Or worse yet, I start to tell someone something I already told them but have no memory of the conversation.
I am cold 99% of the time. This part of me hasn’t really changed that much as I have always been cold due to not having my thyroid anymore and relying on medication levels to keep everything in check.
I really need to get my hearing checked. I have always been known as a loud person. Unfortunately, since sepsis, I am super loud, but don’t realize it. My husband and children are always telling me to stop yelling. I have no idea I am. I can still hear everything ok, just not my voice. To me, my voice sounds perfectly normal. I cringe when I am out alone because I have no idea if I seem to be shouting or not. No one ever says.
The fear of getting sepsis again is pretty huge. I don’t talk about it much because dwelling on any one thing, is not healthy. And since my first bout when I was in Severe Septic Shock, I have already had another Septic infection. That landed me three days in the hospital. My big sign is shivering/chills that won’t go away. I wait a few hours and if not better, head to the ER because I know I need those IV antibiotics sooner than later.
I should have known to go to the emergency room that day when I awoke. I did not urinate all day long. That should have been a red flag that something was wrong. The fact that I didn’t want food or drink of any kind, at all, should have been a red flag, but I was so sick by morning, that I was confused and lethargic by that point. I’m very thankful my husband was home and knew something wasn’t right. Had I been home alone, I wouldn’t have lived to write this.
And I will keep writing about it and spreading awareness. Sepsis kills over 250,000 people in the United States alone every year, millions globally.
God gives us one life to live. We must use our gifts and talents as a service to others. My prayer is that I will never have to say I survived Sepsis again for a third time.
I belong to a Post Sepsis support group and I am glad to know that the many concerns I have, how much I have changed, it’s all our new normal. If normal is such a thing. I miss the old me, but in having to take small steps to make it back, I have learned to appreciate life more and not take it for granted. And someday, I hope to make it through a whole day without a nap. That’s my goal for now.
May you know that Jesus is here for you, every single second of your day. When you need him, he’s always available. He loves you~so very much. Jesus can turn any test into a testimony and any mess into a message. #HopeAlwaysHaveFaith
Blessings to you ~ Carlene
As I sit here, I just can’t believe that summertime is over and school is upon us. For some districts, their school has already started. Our summer break didn’t go exactly as planned, but we still managed to squeeze in a few days at the Columbus (Ohio) Zoo and Newport (Kentucky)Aquarium. Tyson had a blast and that was our hope. A great way to end the summer before starting all-day kindergarten this year!
As I look back on the past several years and read some of my past blog posts, I am amazed at how far Tyson has come. When he entered preschool two years ago, at the age of 3 he had 24 words and some of them weren’t even true words, but sounds he made for something. Now at the age of 5, he not only has unlimited words in his vocabulary but is speaking in multiple sentences at a time!!! We are so thankful to the many speech therapists that have worked with him and continue to work with him on articulating each syllable he speaks. He used the word “very” quite often but still says “berry”. And somewhere along the way, this child has come up with the phrase”not quite yet” when asked if he is ready to do something or finished with it. It is quite comical because he is ever so serious when he says it.
He is very excited to be going to Kindergarten. He will be in a Special Education Resource Room for most of his learning time, but as he excels in areas or becomes proficient, he will have the opportunity to spend time with his neurotypical peers in another classroom, as well as going to gym, music, art, library, and lunch with them.
Four more days and he will be boarding his schoolbus and starting his adventure for the year. To say that I am excited, would be an understatement. I love him with my entire heart and then some, but I am ready for my own break from him. He is so full of energy and inquisitiveness, this grandma is ready for some downtime.
A friend asked me if I thought he would do well in an all-day class and quite frankly, I think he will be amazing. He THRIVES in a structured environment. The night of the school open house, it took a long time to get him out of his classroom. So many things to see and do. The hardest part of the whole day will be getting him up very early (for him) to get ready and eat before his bus comes. I am sure he will be one of the children that will fall asleep on the ride home.
Over the summer, other changes have taken place. Our son moved back home, with a new puppy, that is not trained yet. He is a beautiful dog, but still very hyper and having one hyper “boy” in the house does not help the dog calm down. I keep praying a magical fence will appear around the yard and then both boy and dog could run until they were too tired to move.
Psalm 62:5-8 New Living Translation (NLT)
5 Let all that I am wait quietly before God,
for my hope is in him.
6 He alone is my rock and my salvation,
my fortress where I will not be shaken.
7 My victory and honor come from God alone.
He is my refuge, a rock where no enemy can reach me.
8 O my people, trust in him at all times.
Pour out your heart to him,
for God is our refuge.
As I recover from the medical problems I experienced in June, the Lord and I have been spending more time together and this is exactly what I needed. The waiting game has always been a hard thing for me. I am great at telling others that God is in control and everything in HIS timing, but I am not very good at following that advice for myself. I have never had this long of recovery time after having a cellulitis infection, ever. And then I remind myself, it just wasn’t the cellulitis. The lingering memory problems from the sepsis is one of the struggles I am having. I know memory problems come with age, and I totally get that, but the struggles I am having makes me feel like I have dementia some days. My husband can tell me something, and the moment I turn from him and walk away, I forget it. I then ask him about the same thing and he becomes agitated because he JUST told me about it. Now, I am trying to repeat out loud everything he tells me in the hopes I will retain it in my memory.
Short term memory and cognitive problems are a known response to having
sepsis/septic shock in your body. The fatigue isn’t anything new. I’ve lived and dealt with fatigue for over 10 years due to the fibro. I’m used to fatigue, it’s just that I used to be able to walk more with my cane and now everywhere I go, it’s my walker or wheelchair. I keep doing my home exercises and getting out as much as possible to build my strength. My therapists and home nurse, before discharge were happy for me and all the progress I am making, but being the person that doesn’t like being out of control, I am struggling to see the progress. Today, I woke early (8 a.m.) and haven’t taken one nap all day. I guess I am making progress. I will be calling first of the week to have the hospital bed picked up, as now climbing our stairs is possible.
Life happens. It goes on. Even if we aren’t ready for it to go in the direction it heads. Jesus is at the helm in my life. Sometime’s as life happens, I am reminded that I truly do need to rely on HIM for everything. Sometime’s I need to slow down and take care of me. In my mind, I know I can’t take care of others if my well is dry, but there are time’s things happen that remind me of this fact. My well is slowly filling up, and as it slowly fills back up so I have all the love I need to pour out on others, I will learn to be still and wait on the Lord. I am forever grateful for the people the Lord places in my life to remind me that progress, no matter how imperfect, is still progress.
May you know how much Jesus Loves you~right now as you read this and always. Jesus can turn any mess in our lives into a message and any test we face into a testimony. #HopeAlwaysHaveFaith
I don’t recall much since June 26th except monitors, lots of noise, hospital beds, nurses and doctors.
I was admitted on 6/26 and released on 7/9 for sepsis resulting from cellulitis infection in my right leg.
I almost died. I was sicker than anyone knew. I’ve been out of the hospital since July 9th but am still battling the pain and movements. Therapy begins next week.
Typing takes a great deal of concentration even though my hands were not affected.
I have not forgotten about all of you that read a follow this blog, but it may be many more weeks until I am back to full capacity
Yet I am always with you; you hold me by my right hand.
Psalm 73:23 NIV
May you know how much Jesus loves you..Jesus can turn any mess into a message and any test into a testimony. #HopeAlwaysHaveFaith
Thank you for all the prayer warriors keeping me covered in prayer during this difficult time.
On May 27, 2019, Memorial Day evening, the lives of hundreds of thousands were changed forever including mine. Here in the State of Ohio, 19 confirmed tornadoes, 15 in the area known as the Miami Valley from where I am from. My family and I were some of the very lucky ones that the tornadoes, loss of water and power missed. You can see the interactive map with all the information here.
The Meteorologists and National Weather Service did an amazing job of putting out warnings through news channels, radio stations and cities that had tornado warning systems sounded as well. Unfortunately, some of the cities hit had no siren based warning systems and the fast-moving storms left little time for some people to prepare for the onslaught of devastating weather.
Since Monday evening, my heart has been heavy for all the loss and devastation that I have seen on the news channels, social media and for all the people affected. Only one person lost their life, a gentleman from Celina, Ohio that by all accounts was one in a million. Two hundred people were injured either by the debris and storms themselves or from carbon monoxide buildup and while helping clear debris. Ohio is made up of big cities with a small hometown feel. Almost everyone knows someone that has been affected in one way or another.
But the one thing that has been prevalent since the onslaught of the storms has been the resilient human spirit from total strangers and neighbors helping one another, leaning on one another and all of the donations pouring into local centers to help out those that have lost everything. The kindness and compassion seen through local videos of people stopping to offer food and water, clothing, baby items, from everything and anything are out there for those in need.
As much division as can be seen where evil and hate are lurking, there is so much more love and compassion being poured out for everyone, it makes me proud to be living in a state where when the chips are down, the people pull up their boot strings and get to work helping one another however they can.
As my husband and I traveled North of where we reside today to see a friend that was one of the unlucky ones in losing his home and most of his things, the devastation that we passed on the way there, looked like a war zone from some far away land. As we crept along the roadway, making our way to his property, I was reminded that I am glad I live in a place where no matter what happens, everyone pitches in to help others. When we asked him his thoughts on everything, his response was, “I don’t know what happens now, but I know I will Trust the Lord to meet all my needs.”
Matthew 22:36-40 New Living Translation (NLT)
36 “Teacher, which is the most important commandment in the law of Moses?”
37 Jesus replied, “‘You must love the Lord your God with all your heart, all your soul, and all your mind.’[a] 38 This is the first and greatest commandment. 39 A second is equally important: ‘Love your neighbor as yourself.’[b] 40 The entire law and all the demands of the prophets are based on these two commandments.”
Jesus tells us to love others, expecting nothing in return and this week I have witnessed this. My prayer is that once the cleanup is complete and repairs are made, roads are reopened, that this love for one another will continue. It is sad that it took something of this magnitude to bring out the best in people, but this is a big lesson for all of us to love one another as we love ourselves.
At the beginning of this natural disaster, there were over 50,000 people in the area without power. Our local utility company, with help from over 400 utility workers and companies across many states have been working round the clock to restore power and as of this morning, there was approximately 1,100 left without power. Kudos to the women and men who have been working in hazardous conditions since the beginning. Thank you to the many utility line workers that have left their families and homes to come help restore power. Also, thank you to the Water Plant for getting the water turned back on for all those that have been without water or were under a boil advisory.
For the residents that no longer have homes to live in, the ones that have no place to go to work, for the ones that are struggling to hang onto hope, my prayers are with all of you.
Here is a compilation video from WhioTV Channel 7, Dayton, Ohio of the Dayton-Miami Valley Area Storms.
Jesus loves you~always.
Jesus can turn any test into a testimony and any mess into a message. #HopeAlwaysHaveFaith
I wrote this earlier this evening and posted it to my Facebook pages.
This Season I’m In
I want to scream and cry all at once
I want the fear and worry to cease
I want to know it will all be okay
I want the meltdowns to go away and never come back
I want healing and return to good health
I want peace without begging for it
I want the pain to end
I want one day to be perfect with no problems
I want the storms to pass and the dark valleys to become full of light again
I want to live and not just exist
I want to smile with my mouth and not just my heart
I want to walk with no more pain
I want to know my husband will never have another stroke or seizure again
I want to be all God calls me to be every day
I want to be a light to someone in their darkest times
I know this season I am will not last forever, this too shall pass
I know God will stretch me beyond what I think I can endure
I know God has a plan for my life
I know I may not understand His methods or His plan
I know part of growing is going through stuff
I know He is always with me
I know Jesus is my source of joy, never-ending love, strengthener of my faith
I know everything I go through, He will use for good
I know I am loved without conditions because I am HIS
I want the world to know that the Grace of God is enough to carry me when my eyes cannot see why we go through what we do. Jesus is enough.
I know how blessed I am and my wants are temporary, my love for Jesus is eternal.
©Carlene S. Wooddell/May 13, 2019
Hebrews 10:24 New Living Translation (NLT)
24 Let us think of ways to motivate one another to acts of love and good works.
This past week/weekend, our family had some very scary moments. Where you stop and evaluate your life. Where you remember that it can all be gone in an instant. My husband suffered a stroke that led to a series or maybe just one seizure lasting over 30 minutes. Wires and monitors everywhere, in and out of consciousness, not remembering the episode or even the ride to the hospital, not knowing how close we came to not having him in our lives.
We both know when it is our time to leave this earth, we will return home to Jesus. There is no fear of dying. The fear comes in when you watch the love of your life, laying there motionless and unable to communicate or even aware you are there. As I worked to maintain control of my emotions, silent prayers were being said, calling and texting all prayer warriors to come to our aid again.
He survived this time. He is home now. I am doing my best to not be the “helicopter wife”, hovering over him and treating him like a baby that needs to be watched over, just waiting for the pin to drop, but it has been difficult to not do that. It is hard to watch him realize he doesn’t know much of what happened and even after asking multiple times, he can’t remember and must ask again. The sorrow in his voice as he apologizes for something he had no control over. The concern on how long these effects of his memory will last and the sheer fatigue that is hard to comprehend when all he does is sleep.
While I do my best to reassure him that the rest his body needs is imperative and the short term memory loss is normal, it does nothing to help him feel better about it. And I don’t know if I were in his shoes, it would make me feel any better or not.
The fact he is required to take new medications to prevent future seizures and the possibility of not driving until he is approved to do so by his Neurologists is scary. Losing any type of independence at any age is daunting.
But we will get through this together, one day at a time.
Tell the people in your life how much they mean to you, show them by your actions, love them daily as if it is their last because when that time comes for them to pass on, don’t leave regrets of words and actions not being said because you always thought there would be time. Settle disagreements quickly. Life is so very short.
Trust that Jesus has a plan for your life and He loves you very much!
Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith
Just as the Lord’s mercies are new every morning, I am finding my compassion and mercy must be just as new every day and the events from the previous day must be filed in the crevices of my brain as another day done.
It is so easy to hold onto hurts, hangups, and insecurities and let them fester in our minds. If we dwell on events that have happened days before or years before, we are not living as Jesus Christ wants us to.
Today was a difficult day in our home. For all of us. It didn’t start out that way, most days never do but throw in a child that can meltdown in a moment, and heated words and tempers flared toward one another and you usually have a recipe for disaster. I was reminded of this as my husband attempted to usher our grandson into the house after he climbed down the steps of his school bus with little success. He’s a runner and he loves being outside. After many months of a cold winter, it’s understandable that he doesn’t want to come into the house, but not only is he not old enough to be outside alone, he has a tendency to run as soon as he can and chasing him around the house or down the street to catch him and encourage him to come inside is less than ideal. It usually requires one of us carrying him in, kicking and screaming, literally. And as usual, if there are cars passing by or people they may think he is being hurt or abducted. In today’s world, there is always a fear that someone will think that. And the stares are just as bad as if someone actually says something. Nothing was said, but there were stares and immediately you are on the defense. Even if you don’t want to be. No one, unless they live with an autistic child, can understand the stares or unspoken comments just lingering there.
While we try to calm him and explain why he can’t come outside, the person passing by makes her way to our front door. I opt to be the person to open the door and am ready to matter-of-factly let this person know, everything is ok; he lives here. When she just comes to tell me, I totally understand what you are going through. My child is autistic. At that moment all defensiveness subsides and I am so thankful she chose to come back and speak those words. She stood on my porch for many minutes and we talked about how difficult it is and shook hands knowing that she is not alone in this journey either.
That one event changed the course of our day for all of us. Everyone was on edge for the rest of the day. But we didn’t have to be. We could have chosen to let that moment go and continue with our day; however, no one told our grandson that it was over. He managed to stay in his defiant mood for most of the day. Nothing was going as he wanted, so, therefore, he did what he does. He screamed. He cried. He slammed himself into the wooden gates that separate rooms. He threw a tantrum in the vehicle because he wasn’t getting his way. I’ll admit there are times like today that I cry inwardly because I know that some of it he can control and other moments the overload is just too much and that is the only way he can react because he is lost inside himself.
We go through this so much, that it is part of our normal. We don’t like to go through it, but some days we get through with showing mercy and grace. And then there are days like today when a rough day seems to hit all at once and nothing said or done, makes a difference. So I pray, and I seek the Lord. I pray for wisdom and clarity, give me the right words Lord. Help me; help us.
His routine on Tuesday’s is so different from his other days of the week, that right now, Tuesday’s and the weekend days are the hardest. On Monday, Wednesday, Thursday and Friday, these are his days of joy. He goes to ABA therapy in the afternoon and he loves going and working on new things and learning new ways. But not on Tuesday. On Tuesday he goes to Speech Therapy. He has been going to speech therapy for over 2 1/2 years. I know there are days he doesn’t want to go. He wants a break. And I will admit, there are days I don’t want to have to go to one more therapy session, but it has helped him so much to develop his language and speak, that we won’t quit or give up or give in.
Three years ago, he didn’t speak. He was nonverbal. He didn’t make eye contact or engage with others. He was in his own little world and very rarely were we let in. Now he wants us to play with him. He loves learning. Putting puzzles together. Counting and reciting his ABC’s. He loves school and although he is developmentally behind his peers, he is catching up. And one day he will get there. I cling to that hope. I cling to the day that his words will be clear and communication will no longer be a problem. The funniest thing is that when he is mad, his words are very concise and clear. It’s only when he gets in a hurry to tell us something, that we struggle with understanding his speech.
We were concerned about how he would react to his new baby sister. Would he hurt her? Would he understand that she is fragile? Would he love her or at least like her? We had nothing to worry about. He worries when she cries and he tries to soothe her by talking to her or giving her a pacifier. He is so in love with her. And yes, we still have to watch him like a hawk, because there have been times he wants to pick her up from her bassinet and soothe her cries. He loves holding her and rocking her. I know he will always be a great big brother to her and how lucky she is.
As he became sleepy tonight, he made his way to each of us and in a small tearful voice told each one of us he loves us. And as we hugged him, we reassured him we love you too buddy. Bless his heart. He doesn’t like having bad days either and at least he knows that our love will never change, no matter what his behavior is. He taught me a lot about forgiveness, by saying those three little words.
God’s mercies are new every morning. Ours should be too. We can’t change what happens in the past, whether it’s 5 minutes ago or 5 years ago, but we can change how we respond.
Now, as I sit here and I watch him sleeping, he looks so peaceful. The peace we had hoped would be part of our day, is, just not as we had thought it would be. He’s all boy. He wants to play outdoors, run wild and have fun. He likes picking up sticks and breaking them in half, He tries to help rake the yard and clear all the sticks that have fallen over the winter and early spring storms. Yes, it has made more work for us, but he tries. He hates being indoors, but being outdoors requires preparation. There has to be several of us with him as there are no fences or barriers from him going into the street and he still has no sense of danger.
My challenge to you is this: the next time you are out in your neighborhood or at the store or a local restaurant, don’t be the first to assume that a child is out of control and parents need to take care of that child. They may be doing the best they can with the situation they are given. And remember, God gives us grace daily. Not because we have earned it, but simply because He loves us.
Our charge by the Lord is to love Him and love others. My prayer is that I show the love of Jesus to all I meet and when I fail, grace and mercy will carry me through.
May you know how much Jesus Loves You ~ right now and always. Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith
Genesis 1:27 New Living Translation (NLT)
27 So God created human beings[a] in his own image.
In the image of God he created them;
male and female he created them.
April is Autism Awareness Month, but what I propose is let’s change it to Autism Acceptance month! Awareness is okay, but acceptance is what is needed. There are so many autistic individuals that hear ‘there isn’t a cure’ or ‘we don’t know what causes autism’ and for many individuals on the autism spectrum, they don’t want to be cured; they want to be recognized as individuals who have neurological differences and their brains are wired differently, but there isn’t anything wrong with them. And guess what, they’re right.
Tyson is still the same boy we loved before he was diagnosed with Autism Spectrum Disorder. He has had many challenges and he will, most likely, face challenges as he grows older because of the autism, but having this neurological disorder doesn’t make him less than someone without it, it just means he needs extra help.
When Tyson was diagnosed in July of 2016, he was diagnosed as level 2, meaning he would require substantial support. He has made great strides through intensive home and outpatient therapy, preschool and has added ABA to his list of supports. He no longer needs PECS (Picture Exchange Communication System) or sign language to communicate as he has found his voice. We are so thankful for and happy for him that he has. Communication is a big component of Autism. Some people are nonverbal indefinitely, other’s use visual supports and sign language or ACC devices to communicate.
Augmentative and alternative communication (AAC) is an umbrella term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language.
Social cues is another big area where many autistic individuals have a difficult time. Depending on the individual they may learn how to ‘act’ like their peers and try to blend in; for others slang language or sarcasm is totally lost on them and they don’t understand why you can’t say what you mean, instead of ‘beating around the bush.’ Just be straight forward and say it! For Tyson, he is a very social person when he knows the people, but when we are in a waiting room or a store, he tends to hide and shy away from people. Too many people cause him to be afraid or have anxiety. Even places we go all the time, like outpatient speech therapy.
Sensory processing comes into play for a lot of individuals on the Autism Spectrum. Everyone is different. Bright lights, loud noises, the hum of fluorescent lights, hair dryers, vacuum cleaners, lots of people talking in a restaurant, too many people in one place – these are just some of the things people can be overwhelmed by and if they become overstimulated or overloaded, a meltdown may occur.
Meltdowns are totally different than temper tantrums. A temper tantrum is a reaction to not getting something you want and a person throwing a fit looking for a reaction or response to it. A meltdown is a neurological response to overload and they have no control over it happening. A meltdown looks different for every individual.
Stimming is a term that most people don’t understand or understand the reason why many autistic individuals stim. Lots of neurotypical people stim but usually in a more quiet way. For instance, if you are the type of person that gets nervous in a meeting at work, you may tap your foot or click your pen. But most NT people know when to stop. For autistic individuals, stimming is a way to self-soothe when everything becomes too much to handle. Some people flap their hands, jump up and down, spin around, hum, make noises only known to them and their loved ones, dance and the list goes on. For every individual on the spectrum, there are just as many different ways to stim. The only time I have stopped Tyson from any particular stim is if he will hurt himself. Then redirection is necessary.
The one saying that holds true in the Autism community is “If you have met one person with autism, you have met one person with autism.” There are families with multiple people that have autism and not everyone in the family will deal with the same challenges or respond the same way. Each case is individual.
The last thing I want to say about this today is please be aware that parents/grandparents/caregivers of children/adults of autism don’t have all the answers, they have the answers that work for their specific human. And sometime’s they don’t even have those. It is very exhausting to fight a system to get services, some due to long waiting lists or fighting with the insurance company to approve it or finding services that will be approved.
There are many different types of therapies that can help people on the spectrum, but not every person needs every therapy available and not every therapy available helps every person. To date, there are no medications for autism. There are many co-morbid conditions that some people with autism have, such as ADHD or anxiety/depression and there are medications for those; as well as many holistic approaches to help people.
The Lord God created all of us. None of us are exactly alike. All of us are “wired” the way He chose for us to be. Please think about that the next time you meet an individual with who is Autistic.
I know I have only touched on the basics of Autism, but this is only the first of the month.
May you know how much Jesus Loves You! Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHave Faith