Keeping Afloat in Franklin Lakes

Abuse of children, at any age, disabled or not is wrong. Period. I am sharing this because she is my friend. I know the post is credible and I believe in standing up for what’s right. There is absolutely no excuse for the behavior of the trusted adults in this mess. And what angers me the most, is when the victim is unable to speak or communicate.

The Autistic Momma

We are a blended family with 7 children. We have 5 autistic children, 1 child with other diagnoses and a 1 year old. We believe in a world where people with disabilities can succeed and have a full life. We believe in equality and what is right. These beliefs are being shattered by a school district.

Our story begins 3 years ago when our 6th child was born. The changes caused our then 7 year old autistic child to experience anxiety and frustration. He began biting his hands as a way to cope. We documented each bite and the school was aware. We implemented in home services and within 2 months the biting stopped. We thought this was the end of the story but we would later realize that it was only the beginning.

Fast forward 3 years, our 3 year old autistic son starts preschool in the same school…

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Remembering Daddy

My father went home to the Lord on September 18, 2015. It seems like only yesterday that I heard the words, he’s gone. I miss him every single day and think about him all the time. Wishing I could pick up the phone or turn on my Skype and talk to him. But I have to say that out of all the holidays, Father’s Day is one of the most difficult. Our family is in several states and getting together for any holiday is difficult, so missing him at Christmastime, isn’t the same as missing him on a day set aside to honor him.

 

Constantly being reminded by marketing ads that Father’s Day is near and seeing all types of retail products to entice people to purchase gifts for their dads have made it even more difficult this year.  I have a hole in my heart, that will always be there.  As  my father’s life on earth was ending, he was ready. He knew he was going home to Jesus and he was at peace about it. And our entire family misses him something awful, but we too have peace in our hearts, it’s grief that comes at you from nowhere and knocks you down. There is no timeline for grief. I think the reason it hurts our hearts so much is that when you love someone so much, it’s hard to redirect that love when the person is no longer with you.

I had the privilege of having my father for 50 years. He was my superhero. He didn’t need a cape. He was a man of integrity, put others needs always above his own and he was always ready to help anyone in need, even if that meant the last dollar in his pocket or, literally, the shirt off of his back. His rules were simple. Lead by example. Honor and respect your elders. Be kind. Always be honest. Love unconditionally. Do as your told. No backtalk. Pick up after yourself, do your chores. He wasn’t a complicated person, although from time to time he did make things complicated because it seemed like he always had to have the last word.

I think of the many ways that my father and I are alike and there is no doubt I am his daughter. I pray daily that I honor him in how I live and in how I not only value honesty but will not tolerate people being dishonest. I have no room for it and dislike when I hear people say “it’s just a little white lie”… A lie is just that. Big or small, doesn’t matter.

Daddy & Tyson
Daddy and Tyson

He taught me about Jesus. He modeled a life of service to others. He taught me its ok to laugh and cry at life. Life isn’t fair, you do your best with what you have and you thank God for those blessings. He taught me parenting isn’t easy and you can’t be your child’s friend and parent all at the same time. He taught me that bias and prejudice create hate; love all. Let God deal with avenging.

He has always had my heart, loved me even when I wasn’t very loving and forgave much. We shared a special love of being there and helping others. That’s why its so sad that I have very few pictures of him and me together. I was usually behind the lens.

He lived his life his way and on his terms and he went out the same way.

Daddy, I miss you and love you so much, but  I know I will see you again.

Happy Fathers Day to all fathers!

 

But among you, it will be different. Whoever wants to be a leader among you must be your servant, and whoever wants to be first among you must become your slave. For even the Son of Man came not to be served but to serve others and to give his life as a ransom for many.”
Matthew 20:26‭-‬28 NLT

May you know how much Jesus loves you-right where you are in this moment! #HopeAlwayaHaveFaith

Blessings~Carlene

 

 

Forgiveness Heals

Forgiveness is the key to being free. Letting go of hurts and hang-ups is the beginning of healing in you.

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I grew up thinking everyone knew how to forgive because in our house that is how we lived every day.  My parents only spoke one way to each other and it was always with love.  It wasn’t until I was older that I realized how blessed I was.  My father is a stress management consultant and lives what he teaches.

When we hear the word FORGIVE our first thought is …there is no way I am going to forgive him/her because if I forgive them that means I think it’s ok and I DO NOT THINK THAT WHAT THEY DID WAS OK!!!

Forgiveness does not mean that we are ok with what happened it only allows others to be less than perfect; we are forgiving those who have done wrong to us it does not mean we are approving of what those people are doing.

I would like to share…

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Family Time

This past week, we loaded up our Yukon and drove 989 miles in searing heat with no air, except for the wind whipping around in the truck with our windows down. As humid and hot as it was, and all the perspiring going on, we should have melted the pounds away.

When you travel with a child that has special needs and an adult with respiratory problems, you feel like you’re packing the entire house for a weekly excursion. Loading the truck with suitcases, a medicine bag for several people, mobility devices and a bag of toys/books to keep everyone satisfied….checking lists off twice, it’is not as easy as it sounds. It takes almost an hour to load everything and then you pray you didn’t forget anything.

Our family, except for our daughter and fiancee, secured in our seatbelts and car seats made the normal 15-18 hour trip in 21 hours. Longest 21 hours of my life so far.

I love the state of Florida and someday when I’m old and gray, I hope we can call Florida home again. Ok, I’m old and I do have some gray strands peeking through, but Tyson is doing so well in Ohio and is all set up with his therapists and specialists that moving is very daunting. I’m not sure I could talk his mom into leaving her friends in Ohio and I know I couldn’t handle being too far away from him or our other grandchildren.

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Tyson loved the pool and we tried to go every day while there. At first, he was hesitant, but once in, getting him out was almost impossible. His Uncle Mike made it fun, taught him to close his eyes and hold his nose to go under the water. He loved jumping from the steps with his swim vest on and spinning in the water. This was a great way to expend his energy before our nightly dinners and almost always ensured he would drift off to dreamland.

When your only living parent lives almost a thousand miles away, you cherish the time you have and if you are even a little bit emotional like me, find it hard to say goodbye. I kept my tears inside and thought about how blessed I am to still have our mother here and so very thankful to have spent the 7 days with her. Great memories were made and all of her neighbors doted and loved on Ty. Providing him with toys to use while there and yummy snacks any toddler would love.

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We visited a great Thai rolled ice cream shop in downtown St. Petersburg called Ice Burg. We watched as they made the specialty treats. It was worth the drive downtown just to try it out! Very filling for low prices.

We ventured to a fenced in play area near Gulfport beach in Pinellas County and Ty was able to access a small beach area with sand and shells. For the past few months all he has talked about was going to the beach and building sand castles but as it turned out, that was the only beach he would visit. He didn’t want anymore to do with beaches only the pool. Maybe one day he will relish the sand and surf.

You never realize how much you miss your mom’s home cooking until you are eating it. We ate out twice while there..the rest of the time was savoring the smells wafting in the air as she prepared meals. My mom is an amazing chef!

As we embark on the road trip home, I’m so very thankful to Jesus for keeping us safe. We’ve been on the road for over 8 hours now and thankful my husband and sweetheart is good at driving and navigation; he used to drive for a living.

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The biggest takeaway from this post. Enjoy the time you have with your family. Love one another, laugh and cherish each moment you are blessed to have.

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Don’t just pretend to love others. Really love them. Hate what is wrong. Hold tightly to what is good.
Romans 12:9 NLT

May you know how much Jesus Loves You~right now wherever you are!

Blessings~Carlene

#HopeAlwaysHaveFaith

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.

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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

 

 

 

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.

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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.

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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