Monthly Archives: May 2018

Discord or Harmony? Which do you choose?

I appeal to you, dear brothers and sisters, by the authority of our Lord Jesus Christ, to live in harmony with each other. Let there be no divisions in the church. Rather, be of one mind, united in thought and purpose.

1 Corinthians 1:10 NLT

 

This was my daily verse that appeared on my computer screen this morning and it made me realize that I cannot hold onto anger or irritation because that is not who God has called me to be. How easy it is though to let simple irritations or perceived wrongdoings take hold if we let them. Until I read that verse, I had mulled over what I had found and shared that information with my husband hoping he would be just as upset. And there at that moment, discord happened.  I knew better. I know better, but I was angry.

I do my utmost to be loving in all circumstances and show mercy and grace to all; some days I fail miserably. Forgiving the offense is hard today. Maybe because it’s a repeated offense of thinking of oneself and no one else or the circumstances at hand. However, I know that if I do not forgive, the enemy wins. And if I do not give it to the Lord and ask for forgiveness for my thoughts, words, and actions, I am no better than the offender.

candle burning

Photo by Steve Johnson on Pexels.com

So I will forgive, not because people think it may be the right thing to do, but because that is what Jesus does for me daily. I will forgive because my perceptions are totally different and I can’t let this one offense rule over my thoughts and actions.  Discourse in the church begins in our hearts. Different ideas, perceived notions, beliefs with an unwillingness to shift or change how we do life and how we perceive what other’s think or believe can leave you feeling pretty agitated. We have to be willing, as a member of the body of believers (the church) that everyone hears from God in different ways and every person has different parts of ministry in their lives. We have to be willing to stand up for injustice, love others~even if they aren’t very lovable and be willing to open our hearts and minds to the people God places in our path.

Each one of us is created in the image of God. I believe He did that so that we might see a glimpse of how diverse and omnipotent He is. Remembering that  man looks at the outward appearance and God looks inwardly at our hearts, pricked mine today because it reminded me that my heart wasn’t in a very good place and for my heart to show the Love of Jesus to  others, it has to be full of love, peace, patience, gentleness and mercy- not anger, resentment and bitterness.

I think it is simply awesome that God knows what each of us needs to read or hear in order to put our hearts in the right place, even though all of us have very different circumstances going on all at the same time.  The fact that any of us could attend a church meeting, hear the same sermon and each receives the message to help us in our daily walk, shows us how Sovereign and Omnipresent our Lord and Savior Jesus Christ is. He knows what we need, and He is always listening and ready to guide us. I am so thankful for that.

John 10:10 New Living Translation (NLT)
10 The thief’s purpose is to steal and kill and destroy. My purpose is to give them a rich and satisfying life.

May you know how much Jesus Loves You~right here, right now! #HopeAlwaysHaveFaith

Blessings to all~Carlene

 

 

 

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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

 

 

 

Keeping it Real

For the Lord, your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.”

Zephaniah 3:17 NLT

 

 

I am encouraged by reading the above passage of Scripture.  Yes, Jesus is living among us. His Holy Spirit lives within me. He is Mighty and Powerful. He delights in me! He calms my fears with a love like no other and He rejoices over me with joyful songs.  This verse reminds me that no matter how things may appear to me, my Heavenly Father rejoices over me and my life!

I firmly believe that everything that we go through in life is for a greater purpose than we can see or imagine. I know that God is in control and when you have a personality like mine that wants to fix all the problems around and ease burdens, it’s easy to think you’re on your own.

HAHF

I love the Lord with an everlasting love. One that cannot be diminished by my circumstances. I know there is nothing I will ever face that he can’t possibly understand or hasn’t overcome.

I’ve been feeling out of sorts of late and I cannot pinpoint why.  I can think of many reasons but not specifically pinpoint it. Two years ago, when an invisible chronic illness forced me to reevaluate my life and retire early at the age of 51, I wasn’t sure what would happen or how our family would make it without my income, but I knew God would provide a way.  It was scary.  I had worked since I was 16 and being someone who typically fixes problems, I really had no idea how to fix this. I knew though, that if I didn’t start taking care of myself, I wouldn’t be good for anyone else.

I have never been the type of person that puts my needs above others. I am not wired that way, so trusting God and the Peace He imparted to me, made the decision, although scary, so much easier to make.

Three months after taking early retirement, my daughter and I sat inside a small exam room of our local Children’s hospital Developmental Pediatrics clinic finding out her son, our youngest grandchild, had Autism Spectrum Disorder and that opened up a whole new set of scary challenges. He was nonverbal. That was in 2016. He has found his voice but doesn’t answer many questions yet, unless they are specific questions he can answer.

No matter how much pain I was in, every day I would research and work with him to help him understand, teach him simple signs so he could make his requests known and try to bridge the gap between his mind and the world. His favorite phrase, now is “I love you too.”  He climbs up on my lap, wraps his arms around my neck and repeats that phrase over and over. Melts my heart.

Living within our means was a challenge when I was working full-time and bringing home a paycheck every other week. Living on a fixed income and having enough to last from month to month is nothing less than a miracle from God. And there are some months, there isn’t enough, but God always provides for our needs. We have found hope through food pantry programs and installment plans on bills to carry us through and the love of family and friends.

Somewhere along the way, dreams changed, priorities shifted and I feel like a failure. I know I should not feel this way, but deep down, if we are keeping it real, I do. I can’t be on my feet for very long periods, or my legs go numb all the way to my feet, the searing back pain makes me want to sit down and cry, but I hold the tears back.  The widespread pain I used to experience throughout my body is held at bay by all natural supplements I use and I thank God every day that I found those.  However, they don’t help with the searing pain in my back. It’s the type of pain you learn to live with and you adapt. Pain changes a person, even if you try your best not to let it.

I had hopes of working til actual retirement age and retiring to a warmer state with no snow and no cold weather.  But I don’t see that in my sights anymore. Now I see therapies, medical appointments and helping our grandson thrive in his life. And I truly am not trying to sound like I am complaining, because I love this little guy and would do anything within my power to help him succeed.

I don’t like clutter anymore. At one time, it didn’t bother me as much as it does now. I would guess the fact that I see it 24 hours a day 7 days a week probably has a lot to do with that. When I was working, and then coming home to a mess, wasn’t as important as sitting down and relaxing before cooking dinner, bathtime, and bedtime. Now everywhere I turn, there is a mess. Yes, having a toddler in the home is a tiny part of the problem, but the biggest reason, is I have become too complacent in keeping the house in order. For the past two years, I have been saying the clutter has to go, and yet as I view the room around me, it seems not only has it not gone anywhere, but it has increased! My answer is simple, rent a dumpster, and start tossing. It sounds like an amazing idea until you figure the costs and realize the budget you live on will never work with the idea.

A year ago, my physician encouraged me to consider having a bariatric surgical procedure to help me feel better. And I did consider it but knew there was no way that I would be able to have the allotted time for recovering from such a procedure available to me, so I gave up on those plans. I have been considered morbidly obese for years and no amount of changing the way I eat, ever seemed to help. Exercising is so difficult because of the searing back pain that I have become resigned to being the size I am. And that is scary because I know that if I don’t lose some weight and get down to a healthier weight, I am not only putting my health at risk, I am shortening my lifespan.

This depression in me has rendered me “stuck”.  I want to do more with my life. I want to be a light to others. I want to be healthy. I want to be around for at least another 40 years or so, God willing, but I know that if I don’t find a way to get moving, more than I am now, I may end up more disabled than I already am.

Since 2005, I have struggled with a thyroid problem. I was diagnosed with Graves disease that year, because not only did I have a thyroid disorder, but I also had an autoimmune disorder. I have been without a thyroid gland since 2006 when it was eradicated by radioactive iodine treatments and have had to remain on medications that replicate the production of thyroid hormones that control the organs in my body.  I have been struggling with keeping my TSH levels in the normal range and finally some good news that the dose they have me on is finally showing good results.

Living with obstructive sleep apnea requires me to wear a CPAP (continuous positive airway pressure) mask every night and the machine forces air into my throat and keeps my airway open. About a year ago, I found out that even though my CPAP equipment was working properly, my cells and organs were not getting enough oxygen to live well. So, supplemental nighttime oxygen became part of my routine as well. When someone lives with OBSA, if they sleep for 12 hours or 2 without equipment to help keep their airway open, they will always feel fatigued and may suffer from headaches, leg cramps, falling asleep the moment they stop moving or talking. I never realized how important oxygen saturation in our bodies was until I was lacking it. I felt like a zombie and couldn’t comprehend why I was feeling so horrible, until I was informed, after testing, that even though my airway was remaining open during sleep with the CPAP, my oxygen saturation levels were dangerously low nearing 60%, not the recommended 90% or higher. For me, sleeping without my CPAP/Oxygen is not optional. The only way I can sleep without it is in an upright position and then I am still lacking the proper oxygen my body needs.

As my husband, grandson and I prepare to take a vacation, that has meant putting aside money we really don’t have, so we can get away and relax, I have come to realize this may be what I  need to get back into the right frame of mind. A change of scenery and climate, along with being able to visit a loved one that I miss deeply, might just boost my energy levels again. I am counting down the weeks until this becomes a reality.

Every morning as I sit with God and pray, I see the clutter in my home and I don’t want my heart to remain in a cluttered state. I need to embrace the purpose in my days. Seeing the same four walls and facing the same daily challenges in raising a special needs child can make anyone feel isolated and alone. I know it has for me. I have always been a “people person”. I love being around others and engaging in conversations and somehow, I have got to find a way to do that again. As far as the clutter, I know that many experts suggest starting off small, working on a small area at a time and not looking at the big picture. It’s just so hard when you see the entire picture daily. There is no shutting it off.

I know our lives are always a work in progress. Growth can’t come if we are not willing to change or try things in different ways. I know that for every failure I have ever experienced in my life, there has been a lesson learned and life always looks better when you get through the testing than when you are going through it.

And I know, that the feelings of failure and sadness that have been holding my heart hostage, they too shall pass. I know this because I am loved. I am worthy. I am enough.

Thank you for listening to the ramblings of someone who knows that I have much to be thankful and grateful for and that no amount of “feeling sorry for myself” will help. I guess I need to see the words and read them to realize that. And I owe it to all of my readers. Without readers, there would be no blog and no reason to realize that God will allow many events in our lives to take place as He works on molding and shaping us into the person He created us to be.

May you know how much Jesus Loves You~right now, wherever you are and He is always available to you! #HopeAlwaysHaveFaith

Blessings~Carlene

 

 

 

 

 

 

Blessed to be a Mom

Proverbs 6:20-23 The Message (MSG)

20-23 Good friend, follow your father’s good advice;
don’t wander off from your mother’s teachings.
Wrap yourself in them from head to foot;
wear them like a scarf around your neck.
Wherever you walk, they’ll guide you;
whenever you rest, they’ll guard you;
when you wake up, they’ll tell you what’s next.
For sound advice is a beacon,
good teaching is a light,
moral discipline is a life path.

 

Motherhood does not come with a manual, but a plethora of advice from those who have been in the trenches of raising children.  Some advice is not only helpful but lifesaving in moments of chaos and distress. Much of the advice is not helpful because it applies to certain children with special circumstances.  The best advice I ever received was when your child is happy or sad, mad or hurting, love them. Don’t be afraid that rocking them to sleep will spoil them. Children cannot begin to understand what love is if they don’t see it in their own lives. They can learn, but oh to be able to experience it first hand is so much better than being taught what love looks like.

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This beautiful woman is my mother.

My children, who are adults now, used to exasperate me when it came to school projects. I am sure many reading this can relate. They are given an assignment, in which a visual presentation must take place, along with a report or speech. Many times this counts for a large portion of their grade. Educators know that in order for them to complete these projects, they are given ample time to accomplish them. Several weeks time, usually. However, my children would always wait until the very last-minute to spring these projects on me ~ usually one to two days before they were due!  And as they feverishly rushed to finish them, I would comment on how lucky they were to live in this day and age.

“Google” in my day meant making a trip to the library, searching the card catalog for reference materials and books to read and research. We didn’t have the luxury of the internet or typewriters/word processors that had self correction included. If we made a mistake, we had to start over. Long before “white out” was invented or “correction tape” was available. And many times you could tell by the details, the projects were rushed. Long nights of gluing and pasting pictures cut out of magazines or printed materials, with the hopes they would pass their class. Loving them also meant that if they didn’t complete it to the teacher’s satisfaction, it was on them. Learning to realize that there was a solution always in front of them, using their time wisely and not waiting.

It would have been easy for me to do their homework, but they wouldn’t have learned anything by doing that. Life is full of lessons.  Working on school projects and homework helps to prepare them for the real world with a real job and performing many tasks that may seem mundane, but so important.

I wish I would have taught them about why a budget is so very important. If they had money to spend, as a child, the thought of saving it was lost on them until they saw something they wanted and didn’t have the funds to get it and I was a “mean” mom. If they didn’t need it, chances are they weren’t getting it without working for it. I believe it’s important for children to understand that not everything in life is free. Earning funds to pay for something teaches the value of hard work and feeling accomplished in by the success of reaching a goal. Goals are important in life. Creating plans on how to accomplish goals takes perseverance and a willingness to “get it done” attitude. Lofty goals can be accomplished, but you have to be willing to put the work in to get to where you want to be. And there is nothing that can stop you, except the limits you place on yourself.  There is still a sign, hanging in our home that reads “Just because something is difficult, doesn’t mean you shouldn’t try, it means you should just try harder.”  I firmly believe that. I also believe that “giving up is not an option”. Something my parents taught me from a young age.

Mother's Poem

I have tried my best to model love and kindness to my children. To show them that even though they may not have everything they want, they have everything they need. To teach them that they need to exhibit kindness to others and stand up for the downtrodden. Be a friend, offer a hand up, listen, don’t judge someone by their appearance or circumstance. Be thankful for all you have. And if you want more than you have, do what you need to do to make it a reality.

I never had to wonder if my mom loved me. I was lucky. I am still blessed. I made many choices my mother did not agree with and I know many times she was disappointed, but never once did I have to wonder if she loved me. Never. I pray that my children will always be able to say that with confidence and mean it.

I am not blind to the fact that there are many people in this world that did not have a mother that loved unconditionally or even cared what was happening in their lives. And that breaks my heart. My response to those who haven’t had a  life where they had a mom or had a mother that loved them in spite of their faults, remember this no matter the type of parent she was-she loved you enough to give you life. And I imagine that may seem a cliché thing to say, but it is a fact. If you are reading this, then at some point, a woman decided you were worth it. Even if you were given up at birth, you were worth the love of being allowed to be born. Jesus will always love you, even when you feel unworthy of love.

I also think of the women that don’t have children, the ones that would give anything to have a child, to hear the words “I love you mommy.” And, I don’t know why God allows some women to have children that aren’t wanted and those who want them, for whatever reason, can’t conceive. But know this, there are many motherless children in the world that need your love. If you have a deep need to be a mom, and can’t do it naturally, please look into adopting or fostering a child. God will always make a way.

If you have played a role in a child’s life, through mentoring, teaching and making them feel special, regardless if you are their mom or not, you have shown love.

It is my prayer that if you are mother that you have a very blessed Mother’s Day this weekend. If you have lost a child, please accept my condolences. I too have a child in Heaven and I think about her every single day. One day we will be reunited.

May you know how much Jesus Loves You~every single moment of every day!

#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