He is Lost

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.

Tyson and Me
A moment of rest for T and Me

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!

#HopeAlwaysHaveFaith

Until next time~blessings, Carlene

 

 

 

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I Often Wonder……

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Blessings, Carlene

Broken Pieces

I’m trying hard to comprehend the need for Tyson to break and destroy objects that he comes in contact with. Is it because it’s the natural course in the life of a toddler? The curiosity of how things are made and assembled? Or simply the pure joy of seeing toys, priceless mementos of a lifetime ago break apart, or does his need for sensory input figure into the equation? love-1221444_640

I learned long ago as a younger parent to not ask the Lord for patience; inevitably that required walking out many trials involving the art of patience, only developed as you learn to maneuver the pitfalls and blessings of parenthood. In my 30’s, it seems I was more apt and skilled to tune out the chaos. As I’ve grown older and presumably wiser, my hope was I would be much more mellow than I am.

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Some things require ongoing instruction; He’s teaching me to live in the Peace only He can give. To seek wisdom and discernment in areas that although familiar to when our children were young; they never seemed to have this much high-strung energy that never stops!

And in the same instant that something has been quashed, there’s this ray of sunshine that gleams thru and says, “I wuv you.” And sees my sad frown turned upside down, leaps in my lap and hugs me tight.

I talk to him about the broken objects and try and explain why we don’t break things. Some days, he says,”sorry” other days there is no comprehension that a mistake was made.

And I forgive.

I think of the many times in my life, I have done or said something that grieved Jesus, and yet, He loves every broken piece of me and forgives all.

He doesn’t hold our sins over us but lovingly rebukes and corrects us and allows us to live under His mercy and grace.

At the end of my walk here on earth, I want to know that thru all the brokenness and struggles, I learned to love and forgive like Jesus. To overlook offenses and show mercy. To not be the one pointing the finger, but the one saying, things are just things. People matter more.

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.
John 14:27 NIV

May you know how much Jesus Loves You~right where you are in this moment.

Blessings~Carlene

 

 

 

Making Memories & Learning

Philippians 4:13 New Living Translation (NLT)
13 For I can do everything through Christ, who gives me strength.

 

Earlier today I realized as Tyson was dumping toy bins and playing, that in a week, he will be home all day long. And I started to panic, thinking about the messes and then someone reminded me that I need to look at things a little differently. Don’t look at it as just a mess, but making memories.  I know that’s how I should view it. It’s extremely difficult to remember that, all the time.

Tyson and Bee
Tyson playing with his musical bee

I started getting our learning materials in order so he can continue to expand and learn on concepts he is currently learning and maintaining some type of routine and structure so that when school starts back up in the fall, it won’t be so hard to get back into the swing of things. At speech therapy for the past several weeks, he is trying to learn the concepts “in” “out” “over” “under” “next to” “open” “close”. Asking where, what, and who questions are not as easy for Ty as we would hope, but each week he makes progress. Speaking the words are hit and miss. The word ‘in’ is easy. On and off are simple enough, because they are short syllable words. Last week, he finally could say the word open.  We have been working on the word open since he was 2 1/2. Using the sign with our hands as if we were opening a book and showing him what the ‘O’ sound looks like with our mouth.  What finally did it for him shows me and his speech therapist that all of our minds process words and sounds differently.  She had an ink pen and he was saying pen very well. She made the ‘O’ sound and then said pen-pointing to the pen. He finally got it and said ‘open’.  It took something so different for just that one word, but now he understands how to say it, what it means and the sign language for opening something. It’s been a long 11/2 years for him to understand.  Beginning and ending sounds are something he struggles with.  “V” comes out like “B”.

He fixates on two objects and will watch numerous YouTube videos of these objects. You will never guess in a million years so I will spare you the guessing game. #1-Vacuums #2-Ceiling Fans. Every time we go anywhere that has vacuum cleaners or ceiling fans, he wants to stop and look at them, check out all the details and if the ceiling fans are not turned on, he wants to know why.  I am not surprised by the ceiling fans. They spin and he loves anything that spins. Being obsessed with the vacuum cleaners has developed over time. He DOES NOT like when they are turned on. The sound is too loud and painful for him. He has noise canceling headphones that he wears when we have ours turned on at home, but he loves it so much when it is off, we literally have to pry it out of his hands. He will unwrap and rewrap the power cord as many times as we let him, sometimes for hours if we allowed it. We have learned when we are finished using the vacuum, it is put up right away, otherwise, a meltdown will occur and it may take hours before he is calm enough to talk to.  In the stores, we must avoid the vacuum cleaner displays or he cries and screams.  If they are unavoidable, we have learned the battle is not worth the outcome. We stroll down the aisle and let him see them, point out the colors, features and then we say goodbye.  I never thought in all my life, I would be talking to inanimate objects, but it makes him happy and keeps him calm.

When the weather is nice and not pouring rain, like it has done for the past several days, his mommy and her fiancée take him for walks in the neighborhood. He loves taking walks and playing outside. I miss being able to do this activity with him. I do have my walker with a seat on it, but it’s difficult to hold onto his harness and the walker at the same time. Somehow we will figure it out. Being outside, playing and walking, is not only healthy for him, but it helps to reduce the hyperactivity associated with the ADHD he deals with, along with the medications he is on. I hate the fact he has to be on medications, but for him to stay focused and not out of control, right now they are needed. I am very thankful for his AED medications. He hasn’t had a seizure for almost two weeks, which is great! Dealing with Epilepsy, I am learning is being ever vigilant because he has a mixture of different types of seizures and there is no trigger that we know of, at this time, so you never know when one will happen. AED is the abbreviation for anti-epileptic drugs. I often forget not everyone knows the terms or abbreviations I use.

Today was a good day for Tyson. He was excited when his bus picked him up this morning and played most of the afternoon, watched some videos and spun around until I was dizzy just watching him.

I know that we have to keep his mind entertained as well as having just good old-fashioned playtime.  Repetition is key for him learning and recalling things. He is very visually oriented and I have found a great site to get products from that will help him to learn in a fun way.  I love TheAutismHelper page on Teachers Pay Teachers. If you have Pre-K through 6th grade and love someone on the Autism Spectrum, I highly recommend checking out what she has to offer. There are many resources that I have purchased in the past, as well as some magnificent downloads for free.

I thank Jesus every day that he entrusted Tyson to our family and I pray daily that He will guide me and give me strength when it seems like too much to handle. I know that HE is my strength. Jesus will lead me and guide me, I just need to remember to listen and follow His lead.

children most important work

May you know how much Jesus Loves You~right where you are at this moment!

#HopeAlwaysHaveFaith

Blessings~Carlene

 

 

 

Four Years Already!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Many blessings to all of you~Carlene

#HopeAlwaysHaveFaith

 

 

 

 

“Go Away!”

Go Away is a phrase we hear all the time when Tyson doesn’t want to do something.  It’s easy for him to get his point across, instead of trying to put the words in an entire sentence.  My husband and I heard those words this morning, as we were working on getting his coat on for school.

Tyson has been sick for over a week, not with the flu, thank goodness, just a nasty cold that didn’t want to leave. So, for him, having a structured routine that had become anything but structured the last week, he was used to staying at home and sleeping much later in the day.

His vocabulary is getting bigger every day. For that, we are so thankful and praise the Lord daily for opening up his mind to be able to put his thoughts into words, even when he shouts and kicks and struggles to get away and says, “go away!”

Two years ago, he only had two words. Two. Ma & Da. And the only person he has ever called ‘da’ is his papaw.  Now, he addresses his mother as Meem, I have no idea how that came about, except he has always called me Maw (for mamaw) and there were times he would say mom, to his mother, but then one day, wanting to get her attention, he shouted “Meem,” and it stuck! His style of communicating is music to our ears, even though they are in short one-three word sentences. And the hardest part is understanding him because he struggles with middle and ending sounds of words. But, I have no doubt, as we continue to work with him, through his Prompt trained SLP (Speech-Language Pathologist), his wonderful Play Project Developmental Specialist and at home, those sounds will come, eventually. We still use PECS (Picture Exchange Communication System=Visual Supports) and occasionally sign language, along with his voice.

He was amicable to getting dressed and even eating breakfast, which is usually a struggle this early in the day. but when it came time to put his coat and hat on, the battle ensued. Most people can’t imagine it would take two grown adults, one holding onto him for dear life, while the other works to get the coat on and keep it on, long enough to get it zipped and snapped  He was determined he was not going to school. As he slid off my lap, onto the floor and Mike trying to keep his arms in his jacket, asked Tyson, “don’t you want to go to school and see your friends?” He replies, “no friends, home.” Five minutes before the bus came, he was in his coat and hat, but still saying, “go away.”

As he begrudgingly took da’s hand and walked out to board the bus, I realized it’s like starting all over again. When his routine is disrupted, it usually takes a week or two to get back in the habit of everything and how hard that must be. It’s almost like an adult that gets to go on vacation or take time off from work, getting back into the swing of things isn’t always pleasant when you would much rather stay curled up under the covers.  I am thankful that he is feeling well enough to go to school so he can get back into the game of learning, but so we can have a short break. TYSON BUS

We love this little guy, but we didn’t plan on having a small child to care for at this stage in our lives, so even a short 3-hour respite is welcome!

Every child is a gift from God. Every child is a blessing. Tyson has many struggles that at times can seem insurmountable, but we get through it because we love him. 

Until autism became part of our lives, I never fully understood the impact it can have on a family unit. It changes your perspective on so many things, but the one thing that it has done for me is to remind myself that everyone on this earth has struggles and challenges. Many are unseen.  I can’t see the sensory processing difficulties he has until he starts jumping off of furniture and climbing all over the place, I don’t realize he is missing something until he wants to be tickled and then laughs and gasps for air, says “go away,” and in the same breath, says “more tick”. He is overcoming his tactile challenges with PlayDoh and sand, and will even eat pasta as long as it doesn’t have cheese on it. I thought every child loved mac-n-cheese!  He loves cheese and he loves elbow macaroni, but not together. 

I can’t wait to talk to him about his day. I do most of the talking. Asking yes or no questions to find out what he did in class. And I am sure his first day back, those questions will have to wait until he wakes up. I know when he gets home, he will be asleep on the bus and we will carry him in and lay him down and enjoy just watching him sleep. It is peaceful in these moments. But once he is awake, then the fun will begin. Jumping, climbing, dumping his toy bins, creating what seems like a danger zone to walk through, but he loves having all his toys surround him. I think it makes him feel more connected.  If you are a parent or caregiver of someone with Special Needs, take a break when you need it, don’t give up hope, celebrate every single accomplishment they make and know you are not alone in this. All of us need one another to make it through this thing called life.

Heavens Very Special Child 2

 

Romans 5:4-5 The Message (MSG)
3-5 There’s more to come: We continue to shout our praise even when we’re hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience, in turn, forges the tempered steel of virtue, keeping us alert for whatever God will do next. In alert expectancy such as this, we’re never left feeling shortchanged. Quite the contrary—we can’t round up enough containers to hold everything God generously pours into our lives through the Holy Spirit!

 

May you know how much Jesus Loves You~right where you are in this moment!

Blessings~Carlene

 

Mr. T. in our World

Tyson Haircut

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Blessings to each and every one of you~Carlene