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

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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.

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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

 

 

 

 

Undefined Chaos

I miss my laptop. I know its just an electronic device, but as someone that loves to write, and share my thoughts, I’ve come to realize how dependent I had become on that somewhat portable device. Yes, I can use my cell phone, as I am now but its difficult when the hard drive on your computer has all your reference material, media and other information you’ve saved that you may need. My memory on my phone obviously cannot hold as much. In the grand scheme of life though, it is very trivial to many problems others face.

I can use my husband’s computer but only if Tyson is sleeping because there are too many “cool” things he can get into in that space. And let’s face it, if you parent or care for a child on the autism spectrum when they rest, you either rest too or you clean and do things that need done that you can’t accomplish while they are awake.

This week has been a challenge. The local school system has been on Spring Break and the thought of getting any kind of break has been just that – a thought.

Tyson and I have been passing a cold back and forth between each other and I am so ready for it to be gone. When feeling under the weather, cleaning really becomes a chore.

Its almost 2a.m. here and he is wide awake! He’s currently taking my Crayola markers and stacking them together and showing me how high he can stack them. And exclaiming, “really tall”. I’ve tried several times unsuccessfully to remove them and put them up but he will have no part of it. I use them to color with, he uses them to line up and stack. He doesn’t want to go to bed, but I sense he’s wearing down. He stops what he’s doing and comes over to me and wants my hair down out of the ponytail so he can play with my hair. We have speech therapy in less than 8 hours and he’s not even asleep yet! His sleep schedule is getting worse by the day. Something has to give. Its not good for either one of us to have little sleep but it really isn’t good for him because it can bring on a seizure if he’s overly tired.

He’s become more aggressive than he used to be. Headbutting and hitting in the face and holding him tight doesn’t work as well as it used to. I’m praying his Developmental Pediatrician will have some answers or solutions so he can get back on a better schedule than we’ve had this week. For both of us.

He can’t be put to bed in a separate room to sleep in because the minute you put him in the bed, he’s messing with everything, pulling clothes out of dressers attempting to unplug lamps.etc., climbing and jumping,  removing hot bulbs from lamps, opening lotion bottles dumping them..and the lists goes on. If you lay with him, you become the object he jumps on, climbs on, pulls your hair and again no sleep.

The music is playing in the background now, soothing in hopes he will start to unwind and want to sleep. The only light in the room is the glow from this tiny screen. He’s still full steam ahead.

I know I’m rambling and I apologize. He’s my 24 hour job. I love him. I wouldn’t even want to imagine my life without him, but he is ALWAYS busy. My house always looks like there have been a multitude of children here, while there has only been one. Dishes and laundry get done on a regular basis when my husband is home because Ty knows how to climb out of his five point harness chair. Or done in the middle of the night when everyone is asleep and I should be sleeping.

Every child is a gift from above. I know God never gives us more than we can bear because in those times where we feel all alone and helpless, those are the times He wants us to allow Him in. God wants us, all of us. He is our strength our joy and our peace. Jesus gets me through all the craziness and chaos. Even now. Even when my eyes are heavy and sleep is at hand and I have a 3 1/2 old crying out “no bedtime.”

I’m learning to embrace all these moments. To savor the mess and all that comes with it and to realize His grace is enough. In every moment.

May you know how much Jesus loves you. In every messy moment of this thing called life. Cry out to Him. He is always listening.

Blessings from me and Ty.c046dec741cdaaaeb6e5bb14f47afc91

 

 

 

 

“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.

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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

 

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!