Forgive

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This week has been a lesson in forgiveness for me. Our grandson who is inquisitive , strong, funny, hyper and a autistic has tested my patience and mercy.

At the beginning of the week, he broke my mobile screen near the speaker and spider cracks down my screen, but thankfully it is still usable.

Tonight, my laptop screen was not as lucky. I’m at a loss, as both items will need replaced, in time. Living on a fixed income doesn’t afford the luxury of going to the store and buying new. He thinks, if something is broken, we will go shop. So for now, as long as my phone holds out, I’ll be posting from it.

As I sat and cried of the loss of data that I have no idea how to retrieve, family photos, etc. God reminded me that life is precious.  As our little one cried and kept repeating sorry, I knew it wasn’t intended and I knew holding onto anger would surely give the devil a foothold. Forgiveness was easy because I love him.

Tomorrow is a new day, a fresh start, a chance to do over things I could have done better today.

The Lord’s mercies are new every day. Mine should be too.

May you know how much Jesus loves you-right now in this moment.

Blessings ~Carlene

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“Go Away!”

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

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

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

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

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

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

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

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

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

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

Heavens Very Special Child 2

 

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

 

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

Blessings~Carlene

 

Reflections

As I sit here thinking back on the last several weeks, I am reminded how precious our time is here on earth and how important it is to live our lives to the fullest every single moment we are given and whatever we choose to do, we do it with unbridled passion. Near the beginning of the month, a lifelong friend, that had so courageously battled cancer and never given up hope that she would survive, was killed by her husband.  

She cherished life and her children/grandchildren. She loved her friends and always had something positive to say, no matter how bleak things were for her. She was always smiling, for as long as I can remember. Always smiling on the outside. Always a kind word. And the last time I had spoken to her weeks before her death, she was still hopeful and joyful, even though, as it turns out her life was less than joyful. She chose to live life in such a manner to leave a legacy of loving others with kindness and compassion. She will never be forgotten. She touched so many lives while she was here.  

After the news of her death and paying respects, joining in the sorrow of the loss that many of us feel and celebrating who she was, I realized that none of us know the time or day God will call us home. So, with the time I have, I better us it wisely.`

Prior to the first of the year, I had prayed and planned and envisioned what 2018 was going to look like, what I was going to strive for and what my theme for this new year would look like. My theme is the same: Focus on God, Be Intentional and Savor the Moments of Life. My visions have shifted.

I realized that as I attempted to build an online business with Plexus Worldwide as an Independent Ambassador, I loved connecting with others and offering them hope, through health and wellness supplements, I did not like the “business” side of it. No matter how many customers I gained or other people that signed up to do the same, that is not where my heart lies. I could go on living that lie, or I could get real and realized that God has a different plan for me. When doing something that you are not 100% all in, no matter how much you try to convince yourself, there will always be feelings of resentment or maybe resentment isn’t the right word, but feeling like if I continued on that path, my family and I were suffering, emotionally.  I just knew that it was preventing me from being the person I was created to be.  I will always have GREAT things to say and share about Plexus and the products they offer, and I will continue to use them because they have helped me to feel so much better, but this is not where my joy comes from.

Jesus is my joy! Reading the Word, learning Truth, sharing the Good News that is where I find my joy, that is where I feel fulfilled. Hope comes in many forms and loving others comes naturally to me. I always look for the positive in any situation. I choose to show grace and mercy as much as humanly possible. I have many flaws, as do others, but I look for the good.  There is so much evil in this world, so much hatred and greed and people that are all about themselves, I don’t care to watch the news anymore. That’s all you see most of the time. It’s sad, but the one thing that never ever changes is Jesus. He is the same today, as he was 2000+ years ago, and he will be the same 2000 years from now. He is the one constant in my life. He is my Lord and Savior and He is my friend. 

He has seen me go through so much in my lifetime, and He still loves me. He weeps when I weep and he rejoices when I rejoice. My life has been far from perfect, there have been many choices I have made that have caused others to hurt, emotionally and as he works with me to realize that there is nothing I can do to be perfect this side of Heaven, he has taught me that forgiveness and love can cover over a multitude of anger, hate, evil and despair. When the demands of being a wife, mother, sister, grandmother, and friend become overwhelming, when there isn’t enough time in the day to accomplish all you hope to or need to, when the expenses outweigh the income, He always provides a way for things to work out. When you feel like you are in a tunnel and the walls are closing in, He is the One who lights the path and helps me to hold it all together. Days when I feel like screaming or crawling in a hole somewhere, He is with me. He comforts me. He lives within me. He guides me. 

I sit here in the midst of chaos. Toys spewed all over, crumbs left on the floor by a toddler, laundry overflowing that needs to be folded, dishes stacked high waiting to be washed, bills stacked up and I can choose to do two things, I can look at them as blessings in disguise or I can choose to be angry that no one else seems to notice. 

I choose to see everything in my life as blessings.  There are toys because He gave us this gift in the form of an inquisitive young child that wants to know how everything works and why the wheels spin on the toy truck, or loves the idea of the “black” sweeper, even though he can’t handle the noise of it, the crumbs and the dishes piled high mean there is food in our home to nourish our physical bodies, the laundry means we are fortunate enough to have more than one outfit to wear and a washer/dryer to care for those outfits.  The mess all around is contained by these four walls, we have a home to live in and a roof over our heads.  As I sit here typing this, I am watching my grandson, shred a piece of paper all over the floor, knowing that is just one more thing on my ever-growing list, but my life without him would be so lackluster and boring.

Every single child is a gift and a blessing. Some require more care than others. Extra care that you aren’t sure what that looks like or if it will ever happen where less one on one care will happen, but you embrace them. You love them. Living with someone on the Autism Spectrum is overwhelming, rewarding, crazy, chaotic and sometimes very stressful. Being able to cry out to Jesus and sit with Him in the midst of the chaos, keeps me sane. I think.

If you are living a life that is not what you want, you do have the power within yourself to make the changes.  It may not be easy, it might be the hardest thing you have ever done, but you are worth it.

May you know that Jesus Loves You~right where you are.

Blessings~Carlene

Rest in the arms of Jesus Sam! I love you and miss you deeply. (Samantha Howard Freels, July 7, 1965 – January 12, 2018)

Samantha

 

 

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

 

 

Grand “parenting”

When I had my children, I dreamt of my children growing up, getting jobs, college, and moving out to start their own lives. I didn’t dream of raising my children and then having to help raise one of my grandchildren. Sometimes though, for reasons beyond our control, life isn’t fair and tough choices have to be made.

Our son has moved out and is working and living on his own. Our daughter moved out for a month and a half, moved 1300 miles away and came home due to circumstances beyond her control and found out she was going to have a child. That was three years ago.  There were many mixed emotions from all of us, and wading through them and helping her make decisions wasn’t as difficult as some might believe because in my world love always wins.

1 Peter 4:8New International Version (NIV)

8 Above all, love each other deeply, because love covers over a multitude of sins.

All of us sin, all of us make poor choices and we can choose to love and be loved or we can not. So, even though our daughter made some very poor choices, we chose love over anger and fear.

We offered to help her figure things out and help her with her son. We had no idea that meant we would basically be raising her son, while she merely existed. We know that our daughter has mental health problems that need much more therapy than she is currently receiving, but we also are aware that as an adult, we cannot force her to be tested for conditions, unless she chooses to do them on her own.

We chose to show grace. To love unconditionally, which isn’t always the easiest choice and to help her in any way we could. In doing this, we have enabled her to take advantage of her situation. We are truly aware of this. But we also believe that she has similar conditions as her son, and believe that she is doing all she is capable of. It is definitely a difficult situation.

We never, in a million years, thought we would virtually be raising our grandson. She takes care of him, but not all day, every day as most parents would. She helps feed and changes him, but she struggles with his hyperactivity and constant need for attention. It breaks my heart. I love her and I love Him.

When our grandson was born, healthy and happy we had no idea the challenges that all of us would face. As he grew, we noticed how he didn’t speak and how he would sit and bang his head back and forth, he has an unimaginable strength for a toddler and many other signs. But he crawled and walked very early, so his weaknesses in other areas were passed off by physicians as no big deal. Some babies that have developmental milestones and reach them earlier than most, just means other areas will be slower.

It took until the age of two for medical professionals to take us seriously and realize that he did have developmental delays that needed to be addressed. At age 26 months, he was diagnosed with Autism Spectrum Disorder, Level 2, requiring substantial support and he was considered nonverbal.

The past year there have been many arguments between my husband and I and our daughter. There have also been many times of laughing and crying. We knew that our grandson would need more support and therapies and care than she could offer. And so we have become “grandparents raising grandchildren”. Our daughter still retains custody of her child and they live with us. For many personal and private reasons, we have chosen not to pursue custody at this time. I have been granted Power of Attorney over all of his financial, medical and educational needs, until such time, if at all, that his mother can take over 100%.

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Ours is a unique situation. Many grandparents raising grandchildren are doing it because the biological parents aren’t in the picture anymore or are incarcerated and unavailable or aren’t fit to care for themselves, let alone their children. We know she loves her son as much as he loves her, so we continue to help them both.

Taking care of our grandson is a full-time job. He cannot be left unattended for any reason.  He must be supervised at all times. For the most part, he is a very happy child, but there are times when he can be very angry and destructive. I believe the anger stems from him not being able to communicate and the frustration that comes with that. He doesn’t thrive if toys aren’t scattered everywhere. I don’t thrive very well if the house is in total disarray.

Over the last year, I have done hours of research on how to teach our grandson to communicate through words, sign language and PECS (Picture Exchange Communication System). He has learned his colors, the alphabet and learning how to listen. As with any three-year-old, whether they are on the spectrum or not, selective hearing is a given. But there are many times that he does not hear me, because sensory overload is in full swing and where we can distinquish the sounds and filter out what we are hearing to focus on one voice or one noise, he cannot. Not always. He loves working with sequencing patterns and this is no surprise because he loves patterns, lining objects up or stacking them .  He likes to help put groceries away, canned goods being his favorite, because he can sort the ones that are the same and stack them up. He doesn’t like when they are taken away from him and put away.

As I sit here and write this blog, what used to take maybe 15 minutes now takes hours, as there are constant interruptions. He wanted juice. He wanted a snack. He wanted me to play with him. He wanted me to hold him. He wanted to watch a video. He wanted to grab things off the fireplace mantle that he is not allowed to have. He wanted to carry the cat that doesn’t like to be carried. He wanted to take paperwork and books off my desk and play “52 pickup”. He has plenty of toys to play with. He likes to look at books, but not have them read, that takes too long. He can only have board books. If they are not board books, I must sit with him, or he will tear the pages out and rip the binding off the book. He wanted me to blow bubbles with my chewing gum and then he wanted my glasses off and music turned on, which means he is tired. He touches my face, plays with my hair, rubs his eyes, yawns and just when I think he is almost out, he pops up and hugs me, jumps down, runs back and forth in the room we are in and lays down to play with his cars. I get worn out just watching him. Last night, he found the Febreeze air freshener spray and made sure the living room was smelling good. By the time I reached him, getting out of my chair was difficult, he had pretty much used up the remaining 1/2 of the can that was left! Could I yell at him about it? Nope It was my fault I left it within his reach. I simply forgot to put it up. It still smells like Hawaiin Breeze in our little corner of the world.

The accordion style, hinged gates keep him from the stairway entrance and other parts of the downstairs where he cannot go unless we are with him. Kitchen. Laundry Area. And although he is mighty, he hasn’t figured out how to open the gates, but he is determined. I used to have a foot rest in the room until he realized that he could push that up next to the gate, so he could climb over and jump into the next room. Now, there is no stool to rest my legs on, but he is safe. It’s a trade-off I am willing to do. All interior and exterior doors have additional hooks and locks on them, so he doesn’t run outside and into the street or take off.

Right now, he is napping on the loveseat, after sitting with me while I rocked him back and forth and we listened to music. He loves music, but there are some songs that he cries, maybe the instruments cause the pain or the level of noise is too great. I draw him closer and hug him tight.

Over a month ago, we took him to get his haircut. It was a life draining experience for all of us. He does NOT like his head being touched for any reason and the scissors and clippers scared him, but he needed a haircut and we knew it needed to be fast. If I mention to anyone the word haircut in the course of a conversation, he will say “me”, “da” “maw” “mom” and “car”. And I will say, “Yes, you, me, papaw and mommy rode in the car and we went and you got your hair cut.” His response is “Yay!”. In his world, yay means “yay” and “yes”. He remembers everything.  He remembers the way to a certain store and if we don’t go the same way as we always do, he cries. He does not like a deviation from his routine at all.

As we continue to go to speech therapy every week and have The Play Project come into our home every week to work with him on engaging with others, pretend play, and communication, I will continue to strive to learn all I can to be his advocate and help him succeed.  My hope is that one day, his mother will want to be involved more.

We have three other grandchildren that we love also and sometime’s I feel as if they are slighted, but we do our very best to be in their lives as well and spend time doing things they like to do. Being a grandparent raising a grandchild is a struggle some days, because you don’t know where being the parent stops and grandparenting starts, but you know that you will do whatever is necessary to make sure that your grandchild with special needs thrives in their life.

Just a little over a year ago, I was working full time in a large retail company interacting with adults every day. Now, most of my interaction is with a few adults and a child that laughs, giggles, screams, cries, pounds his head on the floor and I wouldn’t have it any other way.

The hardest part is gaining support. I belong to several online groups of people that understand what I am going through, what we are going through and there we can share our stories, our tears, we can be real, no sugarcoating necessary.

My advice to everyone that knows grandparents that are raising grandchildren, whatever the reason is, offer to give them a break. The reason we have our children, when we are young, is so we can keep up with them and their needs. As we get older, it’s not always as easy. Be that shoulder when they need to vent a little or need a shoulder to lean on. Each situation is unique. Don’t separate yourself from your friends because their circumstances have changed. Ask what you can do to make the load a little lighter. It really will be appreciated more than you know.

May you know that Jesus Loves You! #HopeAlwaysHaveFaith

Blessings to you!

 

 

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.

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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!