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
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
Psalm 94:18-19 New Living Translation (NLT)
18 I cried out, “I am slipping!”
but your unfailing love, O Lord, supported me.
19 When doubts filled my mind,
your comfort gave me renewed hope and cheer.
I am so thankful that Jesus Christ loves me enough to be there each and every time I cry out to Him. It doesn’t matter the hour or day, He is always with me. Guiding me by His Holy Spirit, teaching me to trust in the process of things in life and always holding me up when I don’t feel I can go on.
Our grandson, Tyson has come so far since he received his Autism Spectrum Disorder diagnosis in 2016 but he has also faced many other challenges along the way and we, too, have had to endure many sleepless nights and heartache over the needs he has. As most of you know, when he was diagnosed, he was nonverbal. He said two words. Ma and Da, not mama or dada, just those two single syllable words. Everything else was a guessing game and very frustrating for all of us. But with intense Speech Therapy and many hours poured out of learning sign language and initiating communication with pictures, he is on his way to becoming a great speaker some day. We rarely use pictures to communicate his wants and needs. Pictures are still used as visual supports to help him transition and prepare for what’s to come in our daily life. He still uses the sign for “more” when he wants something, along with asking for more. I am not sure if he thinks using the sign language along with speaking will actually get him more snacks, etc., but his memory is amazing! If he has seen something once, maybe twice, then he can recall it. We are even beginning to realize that he can read some things. Now we just have to figure out how to teach him to read in a way he understands. We will get there, I have no doubt.
I was always under the assumption, like most people, I suspect that if a person has a diagnosis of ADHD (attention deficit hyperactivity disorder) that meant they were too hyper to be focused on any one thing for very long. Boy, was I wrong! Although that is a part of the disorder, there is so much more to it than the term can express. Many people with ADHD have not only a hard time focusing, but can be overwhelmed rather quickly if they are given too much information at once. Their brains are wired differently than someone who doesn’t have ADHD and it takes them longer to process the information. Breaking tasks into steps is one way to help. There’s a great article in ADDitude Magazine that explains how a person’s brain with ADHD functions. Tyson has a combined type of ADHD: inattentive, hyperactive and impulsive. He loses his focus very quickly unless it is something he loves. Right now he is very obsessive about any type of vacuum cleaner and ceiling fans. He can tell you almost anything about them. How to put them together or install one, along with how each part works, but his attention span for many other things only last for a few seconds to minutes. He is working with an ABA therapist to work on his focus issues and well as learning new ways to regulate his emotions in a safe and positive manner. And yes, he also takes ADHD medication to help him level out his emotions so he isn’t as aggressive and having a meltdown that lasts for 5 hours or more. There wasn’t much doubt, ADHD played a role in his behaviors, but until he started school and input could be given from their perspective, we had to wait for that diagnosis to be official.
The language delays have shown improvement as he learns to speak and listen to spoken word. He has delays in areas of receptive and expressive language. I think the most frustrating thing for him is that when he tries to express something to us, we do not always understand what he is trying to say and multiple times of repeating it, he becomes mad and then refuses to talk to us or allow us to explain why we aren’t understanding. He also has a difficult time processing what is said to him. We still need to use short, concise statements. “Pick up toys.” versus “You need to pick up your toys and put them away.” His beginning and middle sounds there has been quite a bit of improvement and now we start working on ending sounds. That is where I am finding the most difficulty. I know he doesn’t always want to keep repeating words over and over, and I know he gets frustrated, but I know I can’t give up on him doing it. I know he can, with everything else he has learned and will learn, it takes time.
Within the last week, I have really been praying and trying to understand God’s plan for Tyson. God knows everything that will happen in Tyson’s life and ours, too, but sometime’s I wish there was a guidebook or cheat sheet I could take a peek at to know what to do when the next thing we need to be concerned about crops up.
When he was diagnosed with Epilepsy, I was pretty upset with God. I couldn’t figure out how in the world, was it fair or right for this kindhearted child to have to deal with so much crap. But God reminded me that He is in control and that I have to trust Him. And I am not in control. I think for me, as a caregiver to a special needs child, I want to make life as easy as possible for him. I hate that he has seizures. I hate that we have to force him to take seizure medication every day because it doesn’t smell great and Tyson has said it doesn’t taste good either. I will be glad when he can swallow pills.
And just when I thought I could possibly know all there was to know about Epileptic seizures where he was concerned, in the past week, he has had two that were totally different from anything he has had before. So as I was jotting down notes in his seizure diary, and getting ready to let his medical team know so it could be noted in his chart; I had no idea what kind it was. He has had multiple tonic-clonic seizures in the past. Absence seizures. But these were different. They appeared to be absence but then progressed into another kind.
He was staring and zoned out, much like someone would be when they are “daydreaming”. That is a typical absence seizure. However, those never last for more than 30 seconds and that’s a long time for those. But then, he dropped what he was holding as his hand went limp and fell backward onto the couch cushion. No convulsions or rigid stiffness as in a tonic-clonic. He wasn’t jerking so I knew it was a myoclonic seizure. And his awareness was different too. He was unresponsive, which is normal for an absence seizure, but when it was over, he went right on doing what he had been and didn’t miss a beat.
I have learned since these last two seizure events that it was most likely a focal seizure (absence) that progressed into a generalized seizure (atonic and tonic). Both of these lasted 2-3 minutes each. There is just so much to remember and learn about Epilepsy and trying to remember each classification is difficult. I had prayed I wouldn’t have to become an expert in this area, but when you have a child with many special medical needs, you realize how quickly your brain can learn new things. According to my research, there are over 40 types of seizures. Some seizures can be a person fumbling or lip-smacking, acting as if they are drunk, stumbling around.
So, he went almost an entire year without a seizure. I was remarking to his mother how lucky he was to have medication that helps control them and then they happened. So in about five hours, we will be making a trip to our local children’s hospital for labs to be drawn so we can make sure his medication level in his system is where it needs to be. And if it is, and he still continues to have the seizure activity, we will have to meet with his medical team and determine if he needs another medication added to his already large group of meds daily, or if he needs to switch to something more effective. And there is no guarantee that will help or not.
He knows he takes medication for seizures, but he doesn’t really know what seizures are or what they might look like. When he’s ready, then we will show him videos but until then, we continue to pray that he will be lucky enough to outgrow them one day OR that they will find a cure.
He is resilient though. He still loves life. He doesn’t let anything get him down and if he can be positive with all he has to deal with and cope with, then so can I.
I know God will use everything Tyson goes through for His glory. And in reality, every struggle or trial we have in our lives, God can use for good. We may not understand why things happen the way they do and we may not always be happy about the circumstances we find ourselves in or our loved ones find themselves in, but we can be assured and know God will never leave us or abandon us. He created us. He loves us. He wants only the very best for us and with all things, His timing is always perfect.
Whatever you may be facing today, may I encourage you to turn to the One who gives you life and pray to him, asking for wisdom, discernment, and clarity to get through it all. He is always ready and waiting.
Jesus loves you! He can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith
Blessings until next time~Carlene
Genesis 1:27 New American Standard Bible (NASB)
27 God created man in His own image, in the image of God He created him; male and female He created them.
Constantly aware. Ever vigilant. Exits secured. Dodging bullets (nerf bullets, toy trucks, sippy cups, shoes, metal toy cars, anything that can be used to target a person or glass screen, window or door). No bunker to run to for safety. No place to retreat to escape the torment. Physically or emotionally. The only place to retreat is Jesus, crying out for shelter and rest as tears tumble down your cheeks. Mentally trying to figure out your next battle plan, strategy to calm the attacks. Weeping because you are exhausted of this every single day. Thankful that 28 days ago, there was a truce of sorts. No battles, no lashing out, no rage at all. A day of peace with quiet, but sad because that was a day he wasn’t feeling good and just wanted to be held and cuddled. Wouldn’t let you let go, because he feels most secure when he’s close and held tight.
Sounds and noises we cannot hear, whether we have tuned them out because we have the ability to filter out noise or because we aren’t gifted to hear such quiet noises he can hear. The moment the gas furnace comes on before we can hear it before we can feel the hot air coming through the floor vents, he rushes over and is fearful, asking “what’s that noise?” but I hear nothing out of the norm. A few seconds later, I hear it chug to life and feel the heat. I assure him it’s nothing to be afraid of, it’s just the furnace (in the basement far from where he hears it).
Investigator of all. The coffee pot full of HOT coffee. The toolbox with sharp tools, that can’t be locked. The dryer that is big enough to climb inside. The vacuum that might need a new belt or part. The stovetop where he can cook his play food. The step stool he tries to stand on to reach something that has been put up high, out of his reach. The tablet or smartphone that he probably knows how to operate better than us. There is never a time we can let him out of our line of vision. Because no matter how many times we say, STOP or DANGER he will still reach for them or climb on it.
Constantly moving, sits for YouTube videos and when he is in his car seat with a locked chest clip and buckle guard, so he can’t escape while the vehicle is moving or in his specialty stroller with a built-in torso vest and extra fasteners. Activities that once held his attention painting, playdough, putting puzzles together, coloring, matching sequences, matching objects in a memory game, no longer appeal to him.
Body slams into people and walls, gates and furniture. Climbing and jumping off of anything he can. Sliding down the stairs on his stomach face or feet first. The faster and harder the surface the better. Hitting and punching, pulling your hair, grabbing your eyeglasses off your face, biting, throwing his body on the floor, banging his head. All the while, trying to stop him from doing things to hurt himself or you. Holding him tight, hugging him, playing music, counting out loud, letting him swing, offering his trampoline, suggesting he spins himself around or jumps up and down. Let’s make a tent so you can hide in the darkness.
Houdini wanna-be. Made it past adult the other day, out the back door wearing a pull-up only. No clothing/coat or shoes. Hates clothing. It was 34 degrees. He didn’t get far this time, I was in the driveway. Doors are secured with locks at the top, every single door in the home, but where there’s a will, he always seems to find a way.
Sleep is either totally out or restless. There is no in between. If he goes to sleep too early in the evening (9pm), he’s full-on awake by 1 a.m. If he waits to go to sleep later in the evening, he’s too tired to function in the morning hours. Night terrors since birth. Some doctors say he will outgrow them. Cannot sleep alone due to health conditions. He co-sleeps with his mommy or me, so at least every other night, we can get some rest. Sleep only comes with the help of prescribed medication, otherwise sleep is like that of a newborn baby, constantly up and down all night.
Psalm 139:13-14 New Living Translation (NLT)
13 You made all the delicate, inner parts of my body
and knit me together in my mother’s womb.
14 Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.
Many prayers prayed throughout the day. Not to make him better, but to help him. Help him figure out why he acts the way he does, how to control his moods and impulses. Show us how to love him through it all in a calm manner. Help us figure out what sets off the explosions, the sensory overloads, the meltdowns, the anger. Help us know when he is in pain, help us to soothe the noise. Help us to respond and not react. Reactions are normally based on emotions and emotions ride very high when you feel like from the minute you wake up until you lay your head down for the night you live in a battle zone. Responding in love and compassion and words that lift up are always much better, even if it takes him a while to process it.
His brain is wired differently than ours. He sees the world differently. That’s okay. We need to learn how to teach in a way that he learns. In a way that he hears. Our expectations can’t be set so high that we set him up to fail before we even start. And we also can’t see our parenting skills as a failure. We know we are doing the best we can. He has one parent and two grandparents that care for him daily. That battle with him daily. That on occasion, we laugh and giggle with him daily.
We miss our happy-go-lucky boy. We miss the one that used to love to build block towers, play with toy cars on his toy race track, blow bubbles. We miss sitting and watching Paw Patrol and Blaze and the Stuart Little Movies over and over and over again.
We miss the child that used to love all types of food, raw vegetables, cooked ones, all types of meats, dairy products, foods that fueled our bodies. Now his main staples are chicken nuggets, chips, cookies, and juice. Occasionally a yogurt sneaks in. And cold cereal. We miss the child that used to drink his liquids the right way and now we must watch him drink and make him swallow it or he will spit it out on himself, you or the floor, table, wherever he can.
We miss the child that didn’t seem angry and upset all the time. We know he is still in there because we see glimpses of him.
We miss the days when he didn’t have to take medication unless he had a fever or an infection of some sort. Now he takes medications to prevent seizures from happening on a regular basis. Medication to help him fall asleep and stay asleep. Medication to help him focus and not be so aggressive. And I often wonder with all the medication he is taking, the constipation it causes him to have isn’t a source of the battles. We will find out more at the end of February when he goes to see a GI specialist.
When we are in public, we pray he will have a good time. No throwing himself on the floor. No knocking merchandise off the shelves. No meltdowns. But when he sees his developmental doctor, although we don’t want him to have problems, it would be nice if just once they could visualize the outbursts of aggression so they could understand it’s not just him having a bad day. All of us have bad days from time to time. Days we want to stay in bed, pull the covers over our heads and skip participating in life that day.
BUT, even with all of this, we are very grateful for how far he has come. Two 1/2 years ago there were no words. No way for him to communicate with us at all. And during this time he has had to endure extensive speech therapy every week. In-home therapies.
Soon, he will be starting ABA services. In hopes that they can reach him and help him and help us to live a little bit more of a peaceful existence.
We will continue to fight the battles and strategize the best way to live our lives with this amazing little boy. He is truly a blessing in our lives. We would never want to imagine him not with us, no matter how hard it can be.
Having a child with special needs requires a lot of perseverance and a whole lot of patience and never-ending unconditional love. And a grandma like me, that isn’t afraid to pray over him daily that Jesus will help him to understand the world around him and that the world will understand and love him just as much as we do.
In four days, his back to school will resume. The winter break has been brutal. His routines thrown out the window. And it will take him a couple of weeks to get back into that routine. Most families cherish winter and spring breaks, a time to refresh and rejuvenate and all I have been praying for is when the day comes to put him back on the bus and sit down with my feet up for a couple of hours and just rest in the peace and quiet.
So, the next time you hear someone say that being a special needs parent is much the same as being a combat soldier, their not downplaying the role of a soldier in combat, but relating the stress levels are just as high. If you know of a family that has special needs individuals, ask if you can help. If you are a special needs family, don’t be afraid to ask for help and support.
Love one another, through the good, the bad and the ugly. Show grace when you feel like you’ve failed. You are doing the best you can. Seek the Lord and His guidance. PUSH-pray until something happens.
Mark 9:22-24 New Living Translation (NLT)
22 The spirit often throws him into the fire or into the water, trying to kill him. Have mercy on us and help us, if you can.”23 “What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.”24 The father instantly cried out, “I do believe, but help me overcome my unbelief!”
Tomorrow is a new day. A clean slate. I cling to Hope.
Jesus loves you more than you will ever know! Jesus can turn any mess into a message and any test into a testimony. #HopeAlways#HaveFaith
I love our grandson Tyson. I will do anything for him. Today, I did a whole lot more praying over him and crying out to my Lord, Jesus Christ seeking guidance and peace.
Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.
1 Thessalonians 5:16-18 NLT
I am worn out. We all are. One minute the day is going well and the next we are trying to figure out what sets him off into a crying, screaming, angry little guy. These meltdowns use to be sporadic, now they’re daily, off and on all day until he falls off into dreamland. Whatever is triggering these meltdowns is also affecting his speech therapy at school and in the outpatient setting. Maybe he’s tired of going all the time and just needs a break; we really have no idea.
The few times I’ve seen him focus on anything here at home lasts only for 5-10 minutes. He has combined type ADHD. Not only is he very hyperactive, he also struggles with focusing on tasks and is very impulsive. His Developmental Pediatrician says it could be attributed to being autistic while also dealing with adhd and seeking sensory input or wanting to avoid sensory overload. While we are trying medication to help in those areas, we are also waiting to start ABA services.
I wonder when these raging times happen if he’s in pain we don’t know about or he believes we know why and wonders why we aren’t helping him.
We have had one day this month where we saw a glimpse of our happy loving child. In our eyes nothing was different than any other day, but for him it was. He laughed and played and not one angry outburst or meltdown. I actually marked that on my calendar; as a reminder he did have a good day. Something to hold onto. Hope if you will.
My heart breaks for him. To live a life where he can’t express the noise within except by lashing out. He kicks, body slams into walls and doors, hits, bites, pulls our hair, throws toys, cups, plates full of food. I fear he is regressing in some way and I don’t know how to stop it.
Being 4, he is very inquisitive and like most children, special needs or not, he still investigates tools and their uses, tries to help fix things he thinks needs fixing or breaking something so he can fix it. And in his mind if something breaks, we can just go to the store and buy another.
Up until this behavior became an everyday thing, I would hear from other parents of the struggles they were going through and thank God we weren’t. Now I understand the sheer exhaustion of it all.
His baby sister will be arriving in a couple of months and as much as I don’t like to worry, because it only causes more unnecessary stress, I wonder what our life will be like then.
I know God is in control. I know He has great plans for Tyson. My prayer is that we will figure out how to help him in regulating his moods so we can live in our home without tears daily. For all of us.
As I sit here and gaze upon this sleeping child, there is a sense of peace that I haven’t seen across his face for a very long time.
I don’t know what our future holds, but I know The One who holds our future.
Father God, Help us help him. Help us be the light in the darkness of these storms. Strengthen us and pour out your peace upon us all. In Jesus Mighty name. Amen
May you know how much Jesus Loves You…right here…right now.
Jesus can turn any mess in our lives into a message and any test into a testimony. #HopeAlwaysHaveFaith
Blessings to all~Carlene
Jesus spoke to the people once more and said, “I am the light of the world. If you follow me, you won’t have to walk in darkness, because you will have the light that leads to life.”
John 8:12 NLT
All of us have dark times in our lives, times that seem hopeless and we feel that no matter what else happens, we will stay stuck in that dark place. It’s easy to let feelings like that wear on you. I have had those feelings lately.
And in the midst of those feelings of despair and depression that takes hold and doesn’t want to let go, Jesus is there. He is my Hope. He is the reason I don’t give up and I don’t quit.
There have been many days that I would rather, pull the covers over my head and go back to sleep than have to get up and face the day and all it holds and that is exactly what the devil wants. He wants me and you to believe that nothing will ever be better and the feelings of hopelessness will consume us and everything in our lives. That is why it is so important to stay in The Word; to spend time with the Creator of the Universe.
Jesus came to earth as a baby, born to man, to save us and give us everlasting life. This life we live here on earth is temporary. This is not our permanent home. I know sometime’s I forget that. He endured hardships, trials, struggles and yet even though he never sinned, not once, He died on a cross, bore the sins of the world so that once and for all, sin would be no more. He shed His blood for me. For you. He did this so you and I could have life and that through Him we would live forever with Him in eternity.
There have been many times lately, that I have hoped for that eternal life. No more pain, no more tears, no more frustrating times. He has a plan for our lives. And in the midst of those plans, heartbreak happens. But if we put our faith in Jesus, He will see you through it all.
For the past several weeks, in our home, we have battled with our grandson. He requires a lot of patience and understanding. Living with a child that is autistic, you never know from one moment to the next what will happen. The demands of a special needs parent/caregiver are great. And until you go through it, and take that walk, you can never fully comprehend all it encompasses. It’s not an easy road. Teaching him requires thinking outside of the box. His learning styles are vastly different from other children his age. He processes information more slowly than most. And just when you think you have him all figured out, when you know what upsets him or throws him into a sensory overload, you are right back to where you don’t know as much as you thought.
We love him immensely, but there have been many times, I have asked God, “Why?” Why is he one of the many that have to have these struggles? Why couldn’t he be normal? Why do we have to keep the same routines, no spontaneity allowed in our life, because this will set him off? Why must he have sleepless nights, with night terrors? Why do bright lights and loud noises hurt him so much? And while there have been no concrete answers, I was reminded of the story of the man born blind who was healed by Jesus and saw for the first time (see John 9 for the details).
I know that God has a plan for Tyson and his life. I may not understand the plan, I may have a hard time coping with what he goes through each day, but I have a God that is bigger than any problem that comes our way. Through Tyson, I see the world through different eyes. Even through the tears, I am reminded that Jesus is with us. And with him. And how much he lights up when I talk to him about Jesus. While I may never fully know how much Tyson understand or comprehends, I know he knows Jesus. Worship music soothes him. Going to church and learning about Jesus makes him smile.
Tyson reminded me, late Sunday afternoon, how much he loves being with others that love Jesus too. My husband and I woke up early Sunday morning, and quietly prepared to leave the house to attend church. Usually, we wake Tyson and take him with us, but I was being selfish and I wanted a break. A break from chasing him and fighting with him to get in his carseat and stay buckled in. A break from his mood swings and impulsivity; so we quietly got ready to leave, leaving him to sleep with his mother and left without him. Later in the day, as he sat on my lap, telling me over and over, “I love you mamaw,” he looked at me with a sad little face and said, “you go church?” When I replied, “yes, papaw and I went to church,” as his tiny little lip quivered, he exclaimed, “I go church!”And I had to tell him no, not this week. He cried. And I realized then, that my selfishness caused him pain. The last thing I ever want to do. And I also realized that this tiny 4-year-old has a love for the Lord and even though it may be a struggle getting there, I won’t withhold that from him anymore.
During the sermon Sunday, the pastor reminded me that all of us must have the sincere faith and love that a child has for Jesus. A child isn’t afraid to ask and make requests, no matter how outlandish they may seem as we grow older. Children aren’t cynical like most of us, mainly because they haven’t had the life experiences we have had and take Jesus at His Word. Isn’t that how we should all be? Jesus came so that we could have life, and have it abundantly! He died on a cross so we could have eternal life! We should have nothing to fear because we have Jesus!
Worry can consume us, which becomes fear of what may happen, but Jesus tells us that He will always be with us, He will never leave us; never forget about us. What a promise to take hold of and help us as we go through our days! He is the living water, and we will thirst no more!
John 7:38 New Living Translation (NLT)
38 Anyone who believes in me may come and drink! For the Scriptures declare, ‘Rivers of living water will flow from his heart.’”
I am forever grateful that I have a Savior that loves me unconditionally and is always available to me, no matter the time of day. He is available to you too!
Luke 11:8-9 New Living Translation (NLT)
8 But I tell you this—though he won’t do it for friendship’s sake, if you keep knocking long enough, he will get up and give you whatever you need because of your shameless persistence.[a]
9 “And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you.
Trust in the Father. Have faith. Hope Always.
May you know how much Jesus Loves You~right where you are-in this moment!
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.
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