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
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
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
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.
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
The past few weeks, I have run the gamut of emotions. Some happy, some sad, mad and angry and some so mixed up I am not sure how to process them, so I sit and I read and I pray. I turn to the Father and seek His guidance. I converse with Godly counsel and friends that love the Lord as much as I do and ask for prayers and wisdom. Doing my best to discern what is from Jesus and what isn’t.
I grew up knowing Jesus. There was never a time in my life I didn’t know about Him or forgiveness, grace, mercy, and unconditional love. And even in my darkest moments, when all hope seemed lost, He was there. He has always been right beside me, His Holy Spirit dwells within me. And just so I don’t sound all high and mighty here, and keeping it real, sometimes knowing all that, I have still tried to figure stuff out on my own, and believe words spoken over me or people’s opinions that belittle me and not stand up for what I know to be TRUTH. It’s easy to allow it to happen if you don’t remember WHOSE you are.
Life isn’t easy and Jesus never promised that it would be. But He did promise that He would always be with us. He would be our strength because His strength comes through in our times of weakness.
Philippians 4:13 New Living Translation (NLT) 13 For I can do everything through Christ,[a] who gives me strength.
In the past several months, I have had many moments where I just want to chuck in the towel and give up. And I hate that feeling. Sleeping was easy. No problems for me to deal with, no solutions to come up with, no hurt feelings to soothe, just sleep. And that would be a pretty good plan if life didn’t keep moving on and every task for the day was done, but in my world, the real world, sleeping all day is not a healthy thing to do unless I’ve had a flare up with my fibromyalgia, or I am sick or I am so exhausted I just can’t take one more step. Meals need to be made, laundry needs to be done, errands need to be taken care of, family needs to be loved and appointments need to be kept, therapies to go to and the list goes on.
I am a positive person. No matter how bleak things appear or seem, I can always find a bright spot, a sliver of hope. Nothing can be as bad as it seems, and even when it is really as bad as it seems, I choose to trust in Jesus and God and know on faith that God will take the bad, tragic and sorrowful times of our lives and use them for good. I’ve experienced it. And that’s a promise in His Word (Romans 8:28)
I have difficulty encouraging myself. Many times I just want to let someone else carry the load. I want a break. I need a break. I never imagined at 53, I would be where I am right now and yes, it could be a lot worse than what it is. When we are struggling in any given moment, it seems like it could be the worst low we have ever encountered. And crawling out of the deep dark hole isn’t as easy as it seems. In moments like this, I usually have to shift my perspective, and at times, I don’t want to. I’m tired. Emotionally, more than physically.
I hadn’t planned on being retired and spending most of my waking moments with only the people I live with. I love them, they are my family, but I am a people person. I love having conversations on a variety of topics, I love being challenged to do things I didn’t think possible.
This video from Mercy Me helps me get through some of my darkest moments. It reminds me where my Hope lies.
I didn’t realize that the extreme pain in my lower back would stop me from being able to live the life I so desperately want. And I am not talking about anything exciting or adventurous either. Simply to be able to go to the store, or take a walk more than 10 feet and have to stop and sit. It’s horrible having this continual pain. I hate thinking about it and living with it. I want to lose the burdensome weight I carry on my frame, but to do that I have to be able to exercise, along with eating right, and while chair exercises are a start, they don’t do much for losing weight. Surgery to repair the damage from the degenerative disc disease in my lumbar spine area is not option until such time as I lose a significant amount of weight and my circulatory problems improve. And there have been many loving suggestions from family and friends. I did consider bariatric weight loss surgery, but that would require at least 5 to 6 weeks of recovery with rest and I can’t even get a few days of uninterrupted rest let alone 5 to 6 weeks.
When I injured my knee and tore the meniscus I was told surgery was not an option because of my health and I felt in such a conundrum because if it was too high risk for surgery to repair my knee, why was it okay to have surgery for serious weight loss? It was safe for one but not the other??
Water exercise is great if you have a pool. But if you have to go to a pool, and pay for use, that can be quite costly living on a fixed income that is stretched as far as it will go. Feed your family, pay your bills or go exercise in a pool of water. It usually isn’t a hard choice to make. We have to have electricity, hot water, and food. We have to have a roof over our heads and we have to be able to take care of a little guy that can’t care for himself.
It’s the days when the pain is hard and other’s aren’t feeling well either, those are the most difficult to get through. But, I get through them. So thankful for Jesus. HE is the reason I have made it this far. I am still walking, slower than a snail, but I am walking. I think of the many things I have to be grateful for. I put on some worship and praise tunes, I make a list of who and what I am grateful for and yes, sometimes I sleep. And ever so slowly, I find my way back to hope, encouragement, and realize everything I go through is just part of my journey. What I deal with personally and what I go through, helps me to see life from different perspectives. I have been on both sides of the pain. The times when my pain was manageable and the times when it nearly knocks me out of the game. I work through the depression, talking it out with loved ones, trusted confidants and Jesus.
Currently, I do not take medications for depression. I did at one time when the pain was so great every single day that I needed it. There may come a time when I will have to again, and if that time comes, I will do what I need to for me.
I think of the times Jesus was depressed. I think of the days before His crucifixion when He knew the pain He would endure and how sad and sorrowful he must have been. I think of Him being nailed to a cross and being suspended on that cross and I realize that no amount of pain I go through will ever compare to His. That image in my mind helps me. It helps me remember that my time on earth is temporary. This body I live in is temporary. One day I will have no more pain. I will cry no more tears of sadness, only tears of joy. Until that time comes though, I will minister to others the only way I know how and I will listen, comfort, share my thoughts and opinions and love the life I have. Part of growing in the Lord and living by faith is trusting in what we can’t see and believe in what Jesus has promised.
May you know how much Jesus Loves You~right now in this moment~wherever you are. Jesus can turn any mess into a message of hope! #HopeAlwaysHaveFaith
Psalm 56:8 New Living Translation (NLT)
8 You keep track of all my sorrows.
You have collected all my tears in your bottle.
You have recorded each one in your book.
I’ve shed many tears in the past several months. We all have. And I cry out to Jesus a hundred times a day seeking guidance, wisdom, clarity, and discernment. I cry because the once happy child we love that lives in our home and most definitely in our hearts is missing in action. And the child that can’t tell us what’s wrong, has become angrier by the minute. We don’t know why, but he has. It’s so difficult to watch the decline in his moods and behaviors.
The words, “No!”, “That’s not okay!”, “That’s not acceptable.”, “We don’t do that.” fall on deaf ears. The constant repetition of trying to explain to this beautiful boy that it is not okay to hit, kick, scratch, punch, bite and be mean to others or throw toys, plates, cups or any item he chooses to use as a weapon to hurt someone or break windows, electronic items; it’s not okay and he can’t do that. Trying to explain to him, once you have his attention (looking into each other’s eyes and asking him to stop, let’s calm down, dry his tears) that not only do we not want to be hurt, but we don’t want him to get hurt either is an everyday task.
He has always been hyper, ever since he started walking at ten months. He went from scooting to pulling himself up to standing and walking. He totally skipped out on crawling. Even now, if he is playing on the floor, he rolls or scoots or somersaults his way through the room, unless he’s walking on his tiptoes or running at breakneck speed. He has one speed and it’s all or nothing. And the nothing only happens when he is given medications to help him sleep. Even when he is beyond exhaustion, sleep does not come without prescribed medications. His brain never shuts down.
Some friends, suggest putting him in timeout. That would be amazing if we could get him to sit still long enough to accomplish that. Today, I put myself in timeout. Sitting on the opposite side of the safety gate on the steps. He was still being supervised, but I needed a good cry. Trying to remain strong all the time, and not knowing when an outburst will occur is heartwrenching. The child that used to love to play with blocks, legos, cars flying down his racetrack, counting and having fun, I don’t know where he is. The child that loved to paint with watercolors, scribble all over the papers and practice using his scissors to cut, he’s lost. I see him stand in front of me, but he’s not the same. The little boy that I could scoop up in my arms, squeeze him tight and we could count or recite the alphabet and talk to one another, I don’t see him much anymore. I see a child full of anger, aggression and for lack of another way to describe it totally overloaded in his mind all the time. Shutting down the television, turning off video devices, taking toys away and never giving them back, doesn’t seem to faze him. The music that used to lull him to sleep, while being rocked, he cries and doesn’t want the music very often.
The night terrors are not as bad as they used to be, now we deal with daytime terrors. Fully awake, but he can’t tell us what’s wrong. Yes, he has amassed many words, but unless he wants something, answering questions is still yes and no for the most part. He can answer to what his name is, the street he lives on, sometime’s the city and who lives with him.
He has been up, five times since being put to sleep tonight. Whimpering. “Please hold me.” So I hold him, we sway back and forth. As he falls back asleep, and I think it’s okay to lie him down. Sleep eludes. The minute I laid him down, whimpers, “please hold me maw.” I’ve decided sleep will come for me once he boards the bus to preschool in the morning.
And as I ruminate about all the changes in the past year for him, I often wonder what happened? Have all the seizures he has had, accompanied by medications known to cause aggressive behaviors and irritability caused this drastic change in my little buddy? Is it the medication he is prescribed for the aggressiveness with the autism? Is it a combination of the medications? But which is worse, having multiple seizures often or living with the behaviors? I have no answers and the specialists don’t seem to know either.
I’m considering everything and planning on going back to Essential Oil use to help relax and calm him down. It worked when he was younger, maybe that is a missing link. I know there are supplements that have been used to help and maybe it’s just possible that is what he is missing. The developmental pediatrician and his neurologist ask if I can videotape his behavior, but when you are the target of the behavior, grabbing your smartphone and turning on video doesn’t occur to me. Keeping him safe and others safe is my first priority.
It has been recommended to talk to an ABA (Applied Behavior Analysis) therapist and see if that will help. I didn’t want to face that fact. But now, I must. We have to for him. Not knowing if his insurance will help with the cost or if we have to cut more corners than we have to pay for it, one more stress to be strong for. I do know, as tears stream down my face, I will do as much as I possibly can to help him. Loving him is the easy part. Knowing what to do next, and figuring everything out by trial and error is the worst. For him, as well as us.
I sit and wonder daily how difficult it must be that the only way that he can cope is to exhibit the behaviors he has. I wonder if the noise, lack of noise, the lights on and off, what is it that makes turn his world and our’s upside down? Can we reach him? I have faith and belief that God would not have let him come this far, only to lose it all and have to start over again.
Two years ago, there were two words. Very little interaction with others and the playtime was limited to large blocks his tiny hands could hold. His vocabulary has increased. He does engage with others, he can hold your gaze for more than a mere second, but the joy of playing, it’s lost. If he can’t throw a toy, he has no desire to play with it.
A year ago, he was flourishing in his preschool class. Following a visual schedule, completing tasks, using listening skills and then midway through the year, it all changed. Once he started having his seizures and had to go on medications, he changed or they changed him.
And now, I look for glimpses of that little boy that laughed and giggled, would jump and spin for the pure joy of doing it. I miss him terribly.
My good friend asked if I know what causes all this. I don’t. I know that he lives every day with many Neurological disorders and maybe right now he is doing the best he can. I remind myself that Autism Spectrum Disorder has many challenges. I’m learning that Attention Deficit Hyperactivity Disorder isn’t just about focus, there are many symptoms I never knew were linked to ADHD. His Sensory Processing Disorder seems heightened more than ever and although his tonic-clonic (formerly grand mal) seizures are held at bay by the AED’s (Anti-Epileptic Drugs) he still has absence seizures, and as much as I would love to say he is just daydreaming as suggested by his Neurologist, I am not sure T even knows what daydreaming is or what it means. He’s 4 with a language disorder.
The one and the only area that his language is truly understood is when he talks to you about vacuum cleaners. That is what he fixates on. He has had toy ones, they don’t last very long. He’s rough on them. Two “real” vacuums in our home have succumbed to his mighty strength. He sweeps for a short period and then while pretending, he picks this heavy appliance up as if it was a feather and tosses it a few feet from him. And when he starts to do that, it is put away. He clings to it and has to be pried away from it kicking and screaming, “my sweep”. Of all the things that he could fixate on, that was the farthest thing from my mind.
I’ve been silent about this. Not wanting to face that we have to find a way to help him. We have to teach him that the way he reacts and acts is not the best way for him. And we have to learn how to do that in his world. Because in our world, we are lost, too.
Lord Jesus, you know the struggles we are facing. Please help T and help us help him. We know how blessed we are to have him with us. We thank you for giving us the gift of this young child and trusting us to guide him. Guide us. Lead us. We want to see him bloom in only ways you know he can. Forgive us when we become frustrated and upset. Remind us that he too is frustrated. Thank you, God. In Your Name Jesus. Amen.
James 1:2-4 New Living Translation (NLT)
2 Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy. 3 For you know that when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.
May you know how much Jesus Loves You~right at this moment~as you are!