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

 

 

 

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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

 

Subtle Differences

In the past few days, I have been pushed around, challenged to hold true to my faith and always remember that there is a reason for everything and God is in control.  I haven’t been pushed around by bullies but by this mysterious disorder known to many as Autism Spectrum Disorder and Sensory Processing Disorder.

For the last year and 4 months, autism has lived in our home, officially.  And while, we have learned many things, and learned how to cope and work with this mystery, I am learning that it truly is a lifelong learning process, not just for our grandson who has autism, but for those of us that love this little guy and want so much for his life to be as normal as possible.

We can’t go to the park or even in the backyard unless there is a minimum of three adults with him. Why? Because he is a runner. He loves to run, and he doesn’t care if he is running down into a creek bed of freezing cold water or into the street with traffic. When he starts running, no amount of hollering at him to stop, or calling his name works.  Which means you have to run just as fast as he does or faster in hopes you can catch him before he enters the danger zone. This was the case yesterday morning when he figured out how to get out the front door, off the porch and ran into the backyard in his pajamas of shorts/shirt and socks in 20-degree weather. He was on a mission to get to his swing set.  He is a sensory seeker, which is part of his sensory processing disorder, he is looking for things that will fill the need of whatever stimulation he is missing and he will climb on anything, regardless if it is meant for climbing or safe to be doing so. EVERY DAY is a battle. And if he doesn’t have something solid to climb upon, he will use a toy or toys stacked up and attempt to do the climbing.

He figures ways to climb over the safety gates that are installed to keep him safe, on end tables and desktops if he sees something he wants or wants to investigate. And then he will jump off of them, regardless of how high up it is or what may be in his jump zone that could be dangerous or harmful to him.

Tyson Cliimbing

He doesn’t like loud noises and as much as he does well at his preschool in a small group of people, he doesn’t like a lot of people in one space. There are times he will run and hide in a wooden cabinet or under a table or cover himself with a blanket, so he is safe and hidden from the world. As he becomes stronger with each passing day, it is difficult to keep him reigned in one area. At age 3, he weighs 38 pounds and is over 3 feet tall.  Putting things up out of his reach is not as easy as they were a year ago. He has always had great strength since birth. Never needed help holding his head up, although we did.

He slides down the wooden stairs on his belly, feet first, and laughs and giggles when he gets to the bottom, running up to do it all over again. I hold my breath a lot. I am so afraid he will seriously hurt himself, but I’ve come to realize that the vestibular input and proprioceptive input he gets from doing a thing like this, he can’t get any other way. Or no way that he likes so far. His mini trampoline, use to provide enough input, he didn’t need more aggressive forms, but now the trampoline just isn’t enough. He can be very aggressive at times, and its hard to try to explain to him that he can’t headbutt others or constantly bang his head on the floor or the wall.  I know I am not the only person that has lived with a child like this, there are many of us that live in silence, because people who don’t experience it on a daily basis, can’t begin to imagine what it is truly like. And then there are sweet calm moments, like right now, where he climbs on my lap, gives me a hug, lays his head on my shoulder, just for a moment to take a break from his high-strung activities and lets me know he loves me and for a moment all is peaceful. But it usually doesn’t last very long.

Each one of us is a work in progress, from the day we are born.  Life experiences shape who we become and why we act the way we do. For most children, language develops at 6 months.  It may just be babbling, but it is a form of language. Speaking and language development is crucial to know if your child has a problem or a developmental delay in communication. By 18 months, he still wasn’t saying anything except ma and da.  Not even mama or Dada, And every time we saw the pediatrician, we were assured that he had done so many other things, early (sitting, crawling, walking) that he was just gonna be slower with talking because he was busy. Repeated attempts to have him tested fell on deaf ears. Well-meaning friends and family offered advice.  Here’s my two cents on this matter: If you think your child has any type of developmental delay, press for the physician to make the referral for testing, to determine what the problem is. You know your child, You spend the most time with them.  I am glad we finally found a doctor that was willing to listen to our concerns and give us the referral we needed.

When he was diagnosed at 26 months, he had just those two words and very little eye contact with anyone. Thanks to early intervention services, speech therapist, developmental specialists, and lots of work at home with him, he was able to start preschool this year, four days a week for a few hours a day. He started with 40 words, well under what a normal two-year-old would have and some of the 40 words were his “made up” words for objects he knew about.  Now after being in preschool for over 2 1/2 months his vocabulary is growing and he is just starting to put two or more words together to form two-word phrases. Since being in therapy, we have learned that his language delays are both expressive and receptive language delays. So his understanding is limited right now, but he is learning and he is thriving.

We are very fortunate that while most children on the spectrum have struggled with sleep, he is not one of them. There is always something to be thankful for. Always.

And when I want to sit and cry because life isn’t fair, and these were the cards we were dealt, I could be angry with God and I could wonder why him? But I am reminded of a story in the Bible, that puts it into perspective the best.

John 9:1-5New Living Translation (NLT)

Jesus Heals a Man Born Blind
9 As Jesus was walking along, he saw a man who had been blind from birth. 2 “Rabbi,” his disciples asked him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”

3 “It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him. 4 We must quickly carry out the tasks assigned us by the one who sent us.[a] The night is coming, and then no one can work. 5 But while I am here in the world, I am the light of the world.”

I don’t know why our grandson has Autism, but I do know that God will work it all out. I know that I have learned many things about this Spectrum Disorder and while he is learning his way and knowledgeable about many things he can’t share with us yet, I see it every day.  He is very smart for a three-year-old. He loves to fiddle with things and take them apart to see how they work, he might be an engineer someday or maybe even a teacher. He is learning what numbers are and what they mean, learning about colors and shapes and loving every minute of it. He is slowly starting to interact with others, and I am thankful for that. At home, his interactions are that of a typical child, in public, it’s a slow process, but a process just the same. He uses a combination of spoken words, pictures, and sign language to request what he wants. Most of the time, we understand, the frustrating times comes when there is no picture and he tries and tries and still we don’t understand. As much as it is frustrating for us, I can only begin to imagine how frustrating it is for him.

His memory is excellent. If he has experienced it, he can share in one-word utterances the details. We have been talking to him lately about getting his hair cut.  It’s way too long for our liking, but he is very sensitive to anyone touching his head or messing with it in any way. But he remembers his first haircut. We took him to a local salon. (Me, his grandfather and mother whom he refers to as maw, da, and meem) And we rode in da’s car and boo boon (and papaw drove and after the haircut, they gave him a blue balloon).

But it was not a fun experience. It took two of us to hold him, while the stylist, tried using scissors to trim his hair nice and neat and we ended up getting a buzz cut because that was the fastest (and probably the most painful for him, i.e. loud, vibrating noise).

As I finish this out for today, he is pacing around the living room, with his shoes on and his backpack, he’s waiting for the bus. It will be a long wait, the bus will not be here until tomorrow morning. But telling him that school is closed, telling him there is no bus coming to pick him up, hasn’t worked. So, until he tires of wearing his backpack, he will continue to walk back and forth with the backpack on. Sometime’s he gets “stuck” and because it isn’t harming him to do this, we allow it. It makes him happy.

Isn’t’ that what we all want for our children/grandchildren to live happy, carefree lives. He was sad that we didn’t go to church today. But it is too much on me to try to contain him in the parking lot, while holding his hand, walking with a cane and carrying a purse and diaper bag, so we missed out today. We played together, read the first few pages of a toddler book and he climbed and I held my breath.

And tomorrow, I will do it all over again until he goes into another phase, that no one knows what it will be or what it will look like. And Jesus will get me through it all. He always does.

May you know how much Jesus loves you~he will meet you right where you are.

Blessings to you~Carlene

 

 

Early Intervention is Key

Early intervention is so important when you think that your child or a child whom you love has developmental delays. Push for the doctors to listen to you and if your child’s doctor doesn’t listen, find another doctor.

20170421_201246

Every parent, whether by birth or adoption, want only the best for their child. They want to see them live to their fullest potential, fit in with the world around them and succeed in every way. When you notice that developmental milestones aren’t being reached, it may just be that they are taking their time. I am not saying to push the panic button. However, if you have a concern, express it, explain it and wait for the answer. If their physician sees no concern, ask them to explain it again.

I have become an advocate for this cause because I live with it every single day. Our grandson, Tyson has Autism Spectrum Disorder, @level 2 requiring substantial support. That is the official diagnosis. He is three now. When he was just a little over 2 years old, we finally found a doctor that was willing to refer him to our local Children’s Hospital Developmental Pediatrics Clinic for further evaluations.

The signs started when he was about 6 months old. He didn’t ever really crawl on all fours, it was more of a “leap-frog” type of crawl. From birth, he had the strength of an ox to hold his head up and when you tried to lay him down to change him, he would twist and turn and place his body in such awkward positions, we didn’t know what to think. Diaper changes were traumatizing for him. The only way to get him to remain partially calm was to sing Amazing Grace to him to settle him while he was being changed.

When he was able to sit up on his own, he would and still does, bang his head and rock back and forth. Immediately we were concerned that maybe he had autism. He wasn’t cooing or saying mama or dada and when he tried to communicate, he would scream inaudible noises. Each and every time we brought our concerns up to his pediatrician, who had been one for over 30 years, we were always met with comments, such as “he has done so many other things early, he will talk when he is ready”. So we decided to trust her judgment. We didn’t know that maybe just maybe she wasn’t the right one to make the decision for us.

At his 18-month check-up, he was very active, wouldn’t sit still for any reason and loved climbing and jumping off chairs, stools, exam tables, but he didn’t like being examined, and his strength would reappear, he would twist and turn and this was chalked up to his age and something that was not a normal day thing.  He had mastered walking on his own at 10 months, but still wasn’t showing any signs of talking.  Trying to figure out what he needed or why he would cry became a guessing game. It was so frustrating for all of us, but mostly for him.  Again, I asked, are you sure it isn’t autism and again I was told he did not exhibit any signs of autism. He was a boy and some boys develop slower in communication than girls and she was concerned. Again, we trusted our pediatrician.

We watched videos of the ABC song, we tried to show him pictures of animals and mouth the words to him when speaking, hoping anything would break through in his mind. The main concern at that point was how will he communicate what he is feeling, needing, wanting if he can’t talk to tell us.

We were very lucky that due to his mother being a single parent, she had signed up for Early Intervention Services when he had been born, in the event he would need them down the road. In the State of Ohio, Early Intervention services are from birth to three years old.

We had Help Me Grow Brighter Futures make home visits from 1 yr to 3 years old. This program focused not only on the child but also helping our daughter be the best parent she could be. They were able to get more services for Tyson and our daughter than we would have on our own. An ISFP (individualized services family plan) was initiated with goals and timelines to meet those goals for both our daughter and Tyson. If goals had not been met by the deadlines, we took a look at the goals, revised what needed and kept going.

HMGBF also helped us get connected with another early intervention provider, PACE (Parent and Child Enrichment Program) through our County Developmental Disabilities Offices. After evaluations with PACE, he started working with a speech therapist in the home, as well as a developmental specialist to find out exactly what he could do on his own and what he needed help with. These specialists were able to form a bond with him, as well as teaching all of us how to work with him at home, for continuity of care. They also helped us have him evaluated for Sensory Processing Disorder by an Occupational Therapist and it has been confirmed he is a Sensory Seeker and Avoider, depending on what we are talking about.

We must be ever vigilant and he can never be left alone. As with any three-year-old, he is very inquisitive and examines almost everything he can get his little fingers on, but he also throws objects as a way to get input his brain is not getting on its own. If you wish to read more about Sensory Processing Disorder, please click the link. He is considered an elopement risk or flight risk child. He doesn’t perceive dangerous situations as dangerous. He doesn’t understand that the street is not a place to play or if something is hot, he cannot touch it. And the most important thing is we can say, “No, stop” and he doesn’t have what his brain needs to process this information at the moment.

Autism Spectrum Disorder is a neurological condition and everyone on the Spectrum has their own challenges. The saying for people diagnosis with ASD is, “If you have met one person with autism, you have met one person with autism.” No two people on the spectrum are alike. What one treatment or therapy works for one person, may not work at all for the other.

From experience, living with and witnessing Tyson daily, Early Intervention Services are very important because a child’s brain is most impressionable and develops by age 3 if services are not started til later, they will progress, but it may be slower.

I am not a medical professional in any way, just a grandmother that has become an advocate for this beautiful little boy who wants so much to communicate with the world around him. If you would like to follow Tyson on his journey, please visit Missing Pieces-Living with Autism.

He has made progress since his diagnosis, so much so, that he will be starting Special Education Preschool services this fall in an integrated classroom. I can’t wait to see how he soars!

For more information on Autism Spectrum Disorder, please visit Autism Speaks.

May you know how much Jesus Loves You!#HopeAlways#HaveFaith

Blessings to all!

Reblogging -Come and See

 A great read about Jesus was written by a fellow writer. I encourage you to read and follow the link at the end of his story.

Blessings!

There was a man who walked on this Earth about two-thousand years ago named Jesus. In fact, every time you write the date on a check you attest to the reality of his existence. There are some today who say he was a great teacher. Others say he was a prophet. But Jesus claimed to […]

via Come and see! — excatholic4christ

Fibromyalgia~Not for the Faint of Heart

FibroWarrior

Living with fibromyalgia isn’t for the faint of heart. You learn to live with a high pain tolerance, otherwise, you would never get out of bed. The television commercials, saying fibromyalgia is a disorder with widespread pain doesn’t even begin to describe the pain and makes it seem that there is no way you can all over body pain at once, but you do.

Just being bumped into, can send shockwaves through your nervous system and can start a chain of events. Most times I have to still myself and breathe deeply to get past it. Today is a moderate pain day, but my energy levels are almost non-existent. I did manage to get dressed and eat some breakfast/lunch.

I made the mistake of thinking I could accomplish what needed to be done over the weekend and doing it on the same day instead of breaking it down into two or three days. I miss having a clean home. So, I set to task to cleaning and putting away toys that a three-year-old think it is okay to string through the house. Then came folding a week’s worth of laundry for a family of four, because it was getting harder and harder to find clothing items, without digging through 4 baskets of laundry. I played with said three years old, and him climbing on me and jumping up and down, big hugs and squeezes. He is full of energy and I fake it a lot.

Dishes had piled up in the kitchen, recyclables sat everywhere that need rinsed out, and placed in the bin. The floor needed cleaning. Two hours later the kitchen was cleaned. You can’t tell it now, it looks like I haven’t touched it.

What normally would have taken two to three hours max to clean, took almost 8. The constant need to sit down and take a break is ever present. Standing for more than 10 minutes at a time causes burning and searing pain in my lower back causes excruciating pain in my hips and legs. My legs and feet swell if I am up on them for any length of time and my skin stretches so tight my leg weeps. Even my legs “cry” because of the pain. Today, I have been sitting trying to rest and store up any small amount of energy so I can go to my women’s group at church tonight. If I do anything, I won’t have enough to drive up there and walk in. Dusting hasn’t even happened yet this week. I see it needs to be done, but that requires more energy than I have.

I have incessant itching on my arms and back, daily. Although I use prescribed lotions to help, it doesn’t take away the itching. Raw spots appear, followed by scabs. My arms look like a war zone, so when I go out I wear long sleeve shirts even if it is warm out, fewer questions and embarrassment to deal with.

Sleep patterns are no longer restful sleep. When I was working full time, I would be severely depleted when I came home and by the time dinner and bath time was over, sleep was not a problem. Now insomnia attacks daily. As a person that also suffers from severe sleep apnea, not only do I use a CPAP machine at night to help keep my airway open, in the attempts to achieve REM sleep, the restorative sleep our bodies need, I also must use supplemental oxygen, because without it ,my oxygen levels in my blood drop to dangerously low levels. My oxygen levels drop to 60%. It should be at 92% or higher. It is so frustrating. I can feel exhausted and just want to go to bed and then once I am there, I can’t sleep. I have learned sleeping without my CPAP causes a whole host of other problems. Headaches, body cramps, confusion, extreme fatigue. It’s like sleeping without any oxygen coursing through your veins. Almost a lifeless state. And days after that occurs, you literally drag yourself to just function. Doing anything that requires attention to detail, can cause you to nod off. It is not a way to live.

When I first wake up in the morning, I have a hard time focusing, even with my eyeglasses on. My eyes feel like there is a haze glued to them and it takes almost 30-40 minutes before objects are clear enough to see.

Sitting in any one position for too long causes pain in my hips and knees and since their is also arthritis in my back, hips, and knees, it is a constant battle to just sit, move, lie down. I know from living with all of these chronic ailments that I have to keep moving and have to push myself, otherwise, I will be in such horrific pain, I won’t want to do anything. But, I have to be careful not to overdo it or I will be down for the count. The fatigue is always there. It’s not just being tired from working too hard or not enough sleep, it is fatigue you can feel in your bones. It’s the type of fatigue that if you don’t lay down and rest for at least several hours, you will be physically sick.
You never know when it’s going to hit you and you pray you are at home when it does. It’s like being on a long road trip and you’re stiff and sore and if you don’t get out of the vehicle soon, you might just crash.

Fibromyalgia causes so many other symptoms, you never know what your day will bring until you are in the midst of it. For some people, heat makes it worse. For me, the cold is worse, because of arthritis. Although, I do tire more easily in humid weather.

To look at me, I may look tired and maybe even close friends see I am in pain, but I don’t look like I’m sick. I am thankful I don’t look like how I feel because it would be a scary sight. Between irritable bowel symptoms and constipation, there is always a fear of what will happen at any given time. It is no way to live. When you have FM, you are aware of everything but have no way of controlling it. Many people I know that have FM, use narcotic painkillers to help with the pain. I am not one of those people. Due to my oxygen levels and breathing problems, I can’t take those. So I use OTC pain meds to help take the edge off as well as Anti-Depressant meds to control some of the pain and the depression that comes with it.

I hesitate to make any concrete plans with family and friends, because once it’s time to go away, sometimes I just can’t do it. Or I do go and pay for it after the fact. This usually throws me into what’s called a fibro flare. When I’m in a flare up the pain is magnified 500 times. I don’t want anyone touching me and I don’t even want to breathe. Obviously breathing is important.
I wouldn’t “wish” this disorder on anyone. Living with chronic pain is one of the hardest things I have done so far.

I used to love to craft and plant flower beds and spend time outdoors, but now planting my flowers is out of the question. I don’t have the stability to kneel down on my knees or I fall over. I don’t have the muscle tone to stay upright. The degenerative disc disease in my lumbar spine makes it nearly impossible to get up and down without help. IF I sit on a hard surface, it is easier to get up and down, but that too causes pain; if I sit in a recliner or on the sofa, I can’t get up without assistance. I prefer not to lay in bed all day, although there are days that is exactly what I have to do.

The one thing that gets me through all my pain and afflictions is Jesus Christ. I know He is with me always. I cry out to Him in prayer and let His peace wash all over me. The pain doesn’t end, but I know that no matter what pain I am enduring, Jesus understands and can comfort me.

Some days I cry and grieve of all the things I have lost that I cannot do anymore because of my disabilities, but I cherish the friendships I have gained because they have become a support system to me because these special friends suffer just like I do. We vent to one another; we laugh and cry together.

Invisible chronic illness is hard to live with because many people do not understand. Those of us with this disorder don’t like canceling plans and we don’t like complaining. We live in silence for the most part, because we too get tired of hearing it.

If you know or love someone with chronic pain and illness, be kind. If you haven’t lived the battle within, ask questions, but be prepared you may not like what you hear or you may want to help, but the best thing, sometimes, is just to listen. Let them know you care. It’s hard.
May 12th is Fibromyalgia Awareness Day. Learn what you can, because my guess is you know at least one person that suffers from this. It might even be you.

Blessings to all!

New Eyes

Ephesians 4:30New International Version (NIV)

30 And do not grieve the Holy Spirit of God, with whom you were sealed for the day of redemption.

How many times a day do I grieve the Holy Spirit of God, with my words and actions? Jesus died nailed to a cross for me; for you. He took upon Himself the sins of the world, and He did this because His Love is greater than our earthly eyes can even begin to imagine or grasp.

Every time I argue or disagree with someone, do I stop to think that maybe, just maybe they are in their own battle and instead of being loving and kind toward them, I am only increasing their pain. I don’t ever set out on my journey for the day wondering who I can hurt, but I know I have, and words can pierce through your hearts in ways that aren’t easy to fix.

Just as God is my Heavenly Father and Creator, I as a parent have been grieved by actions of my children. As a parent, I am to protect them, teach them and love them, whilst allowing them to make mistakes, just as I have made, so they too can learn from them.  It really hurts my heart, when I can’t fix them or fix the world for them.

Our daughter faced bullying at a young age, and the reality is because she hasn’t accepted the Lord as her personal Savior, she has no room in her heart for forgiveness. She holds onto the hurt and spews it from her mouth when she feels there is no way out. She puts up walls and those walls become impenetrable to break through. Every disagreement, argument or hurt that she feels comes out in anger toward whoever is in her presence when she explodes. In moments such as these, I want to scoop her up in my arms and hold her tight and protect her from the hatefulness the world has to offer. That is not an option. She is in her 20’s now and has informed me more than once that she is not a baby. Wrongs become grudges that never go away. They have such a stronghold on her that the only thing I can do as her mother is to pray that God will continue to work with me and others in her life to show her the way.

So, the point I am trying to make by sharing this little glimpse of my life, is if she grieves my spirit, how much more do I grieve God’s and how do I fix that? I do pray and ask for forgiveness; I walk with Jesus daily and allow His Holy Spirit to guide my actions. There are many times throughout my day that the Holy Spirit will nudge me to go one way and convict my spirit that I need to do something, even if it’s painful for me to do.

JesusChrist

How many times does Jesus have to tell us that there is nothing we can do to earn His love and salvation?  Once we accept Jesus, we are to love like He does. See the world thru His eyes. Every day He works on me to be a better person. Forgiveness is the key. Showing grace and mercy even when we don’t want to. Being willing to admit that being right all the time isn’t’ worth it, if it hurts the people you love the most.

James 3:5-9New International Version (NIV)

5 Likewise, the tongue is a small part of the body, but it makes great boasts. Consider what a great forest is set on fire by a small spark. 6 The tongue also is a fire, a world of evil among the parts of the body. It corrupts the whole body, sets the whole course of one’s life on fire, and is itself set on fire by hell.

7 All kinds of animals, birds, reptiles and sea creatures are being tamed and have been tamed by mankind, 8 but no human being can tame the tongue. It is a restless evil, full of deadly poison.

9 With the tongue we praise our Lord and Father, and with it we curse human beings, who have been made in God’s likeness.

All of us must remember that our words can build up or tear down. Be kind. Think before you speak. Love wholeheartedly. Trust in the Lord and follow his lead!

Blessings to you and yours!#HopeAlways#HaveFaith

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