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

 

 

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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

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

 

 

 

Blessed to be a Mom

Proverbs 6:20-23 The Message (MSG)

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

 

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

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This beautiful woman is my mother.

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

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

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

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

Mother's Poem

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

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

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

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

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

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

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

#HopeAlwaysHaveFaith

Blessings~Carlene

 

 

 

 

Four Years Already!

Romans 12:11-13 New International Version (NIV)
11 Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. 12 Be joyful in hope, patient in affliction, faithful in prayer. 13 Share with the Lord’s people who are in need. Practice hospitality.

Three days ago, Tyson turned 4. It amazes me how time seems to go so fast the older I get. I remember the moment he entered the world and what great joy he brought to our hearts! To hear his first cry and to hold him close and think of all the great things he would accomplish in his life, dreams you have for your grandchild; the same kinds of dreams you have for your children. Dreams they will be healthy and happy and know how much they are loved. That adversity and obstacles will not cross their path and if it does, they will be able to cope with those and continue forward.  I remember thinking how perfect he was as I held him that very first time in my arms and thanked God for this beautiful life he was entrusting to our daughter and us to nurture and love and teach. Little did I know that not only would he face many challenges near the early part of his life, but that they would also change the way I viewed the world and allow me to see pure and simple joys in so many things I had taken for granted for so many years.

At birth, he was almost 10 pounds. He didn’t look like a brand new newborn, more like the size of a 2-3 month old and most of his newborn outfits he didn’t even fit into, but that didn’t matter because he was healthy, and appeared happy and slept through the night. Yes, we had to wake him to actually get him to do his feedings. He loved being swaddled in a blanket; the tighter the better, on one condition though, his arms could not be trapped in that wrapping.  They had to be free. He still loves to be wrapped tightly in a blanket or sheet. He loves the deep pressure that he needs for his sensory needs.

Four years ago, I had no idea what terms like sensory needs or sensory seeker/avoider meant. but I do now.  And stimming, I thought that had to do with floral arrangements, not something that a child with autism does to calm themselves. And what the heck was PECS? Did that have something to do with bodybuilding??? Nope. PECS is a picture exchange communication system for people that do not speak or can’t speak clearly enough for you to know what they want or need.

When you have a special needs child, there are so many terms that seem so foreign and so overwhelming that you wonder if you will ever make sense of them. You wonder how in the world am I supposed to remember all this and how do I help him make sense of it all. But God knows what we need and he places people in our lives to help us make sense of it and get us through our journeys. No matter what our journey looks like, He always makes a way.

At 26 months, Tyson was diagnosed with Autism Spectrum Disorder, Level 2.  I had no idea there was such a thing as Levels for individuals with ASD and was level 2 a good or bad thing? Click here to read the difference in the levels and what type of supports need to be in place to help each person. There are three levels of ASD. Level 2 under the DSM5-Diagnostic Manual means he would require substantial support. He was non verbal. Made very little eye contact; and did not play appropriately with many toys. He was happy doing things on his own without interacting with others, but has always been very empathetic and loving, especially if he noticed a family member was teary eyed or not feeling well. He would hug you and pat you on the back, as if to say, it will be okay.

As the months progressed, after his diagnosis, we had many other evaluations done to determine if the reason he wasn’t verbal was because of a hearing disability or a speech impairment. His hearing was fine, so that meant either he didn’t know how to form words to speak or he didn’t have a voice, but that didn’t deter us. He has been in Speech Therapy for almost two years (in August we will hit the two year mark). And it has been amazing to see him learn how to tell us what he wants through the use of PECS, simple sign language and short to the point words. Most recently he has been putting 4-5 words together to express himself! His utterances may not be grammatically correct, but it is music to our ears!!

For him, his sensory needs are many. Some we are still navigating through and learning. He received a diagnosis of Sensory Processing Disorder in October of 2016 from an Occupational Therapist that observed him and listened to our concerns/more questionnaires to fill out and he is definitely a sensory seeker.  Seeking out ways to get the input his body needs in ways that aren’t always safe or acceptable. He will climb on anything he thinks he can, even if it is not something any neurotypical child would consider doing. He plays hard. Danger and unsafe don’t mean a thing to him. He knows that my coffee cup is hot, but doesn’t understand that if he spills it, he could get burnt. No comprehension between what hot is and how it can hurt. He loves to bang his head on the floor, into the wall, on the back of a chair and even though he cries, the tears only last for a few seconds and he will do it again. And he has always done this for as long as I can remember. He LOVES water. But water is always a danger, because he doesn’t understand that you can’t go under the water and stay there. The street to him is a big place to run and be free, and the list goes on.

As a sensory avoider, he covers his ears when there are loud noises such as a vacuum cleaner or hair dryer turned on, but he can watch videos cranked at full blast, at a spring concert for our granddaughter the singing did not bother him, but the band instruments made him bury his head, because they were too loud. Every day is an adventure, because you never know what noises will bother him and which will soothe him. And bright lights or a very sunny day and he will cover his eyes, but he doesn’t like it totally dark either.  He has learned the difference between the sun and the moon. When we can’t see the sun anymore that means the sun has gone to bed and the moon lights the night sky. When the clouds are out at night and the moon is hidden, he searches to see where it is and he doesn’t like the explanation that the moon is hiding. Sometimes this alone can cause him to have a meltdown.

Stimming for him is a way for him to release when everything becomes too much in his brain. And just as ASD is different for everyone, stimming is different for everyone too. He loves to spin in circles until he gets dizzy which can seem like that will never happen. And when he finally stops spinning, he will start all over again. He laughs and smiles when he does this. And he loves to jump. On his indoor trampoline or a mat on the floor or when he grasps your hands and wants you to hold them while he jumps up and down over and over again.  Occasionally he will walk on his tip toes for a while and I have yet to determine if this is a form of stimming or just a part of who he is.

In July of 2017, he received an official diagnosis of MERLD. Mixed Expressive Receptive Language Disorder.  

Mixed receptive-expressive language disorder is diagnosed when a child has problems expressing him-or herself using spoken language, and also has problems understanding what people say to him or her. Follow the link above to learn more in depth information. Being in Speech Therapy, once a week for the past two years have helped him to expand his understanding, but there is still so much more for him to learn and understand. He also receives speech services through our local school district once a week as part of his IEP (Individualized Education Plan) for the integrated preschool program he is a part of.

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He relies on visual supports at school and home to help him understand what tasks he needs to be doing and how to accomplish them. Or when we need to prepare him for appointments or outings, we can show him with pictures and he gets it, but tell him and he may or may not understand. And some of the visual supports need to be broken down into steps until he learns them.  It doesn’t seem like it would be a big deal, until you try to teach him something new and he just wants to try and figure it out on his own, but has no clue how to do it. Steps are important. For example let’s say we want him to wash his hands. When he first learned to do this independently, he thought you just got your hands wet and that was it.  So Step 1 – turn on the water (with supervision or the bathroom will be flooded in no time-no joke) Step2 –  test the water-is it too hot or cold?? Step 3 – put your hands under the faucet and get them wet. Step 4 – put soap on your hands. Step 5 – rub your hands together so the soap gets all over them. Step 6 – Rinse the soap off your hands with the water.  Step 7 – turn the water off. Step 8 – dry your hands. Step 9 – put the towel back. Step 10 – all done. (No more playing in the water!)  Now for you and I we just simply wash our hands. But until he learned those steps he had no idea what it meant to wash his hands.  And the school and us, here at home, still have to remind him that he cannot play in the water or turn it on without help. We will continue to work on that and he may get it one day or he may not, because as I said before he LOVES playing in water.  Imagine having to do that for everything you want to teach him, that’s  just one part of his MERLD. A very small part, but with huge skill set learning.

In October of 2017, after having two unprovoked seizures, he was officially diagnosed with Epilepsy. Since then he’s had many seizures and we’re hoping the anti-convulsant meds he is on will hold the seizure activity at bay. His meds are in liquid form which he gets three times a day in his juice or milk. Sometime’s he is wise to it and will comment how “yucky” it tastes; and I will suggest that we just need to shake it up and mix the juice. The power of suggestion has been enough so far and he will take it. Out hope is as he becomes older he will be able to transition to tablet form of the medications.

Each time he has had a tonic-clonic seizure (formally known as grand mal seizure) he has no idea what has happened only that he is extremely tired and sleeps a lot. He also has absence seizures, where he appears zoned out or staring at something no one else can see. The staring episodes have happened since infancy,but EEGs never showed any seizure activity so we had no idea to be worried or concerned. And the EEG/MRI done in September did not show any activity during the testing. There is no rhyme or reason to his seizure activity. He is not left alone because it is not safe for many reasons, epilepsy being one of those reasons.

And yes, there are many days I’ve thought how much more, Lord? How many more trials will he face, but I know that Jesus loves Tyson as much as he loves all His children.

Right now, Ty doesn’t understand and comprehend all of his medical and developmental delays, only that he goes to the hospital to see his doctors.

When he first went on the medications for his seizure activity, we noticed a shift in his happy carefree self. His meltdowns increased and his behavior became more aggressive and for lack of a better term, angry. His appetite that had once been healthy and hearty became almost birdlike. It turns out that many of the AED (anti epileptic drugs) medications used can have side effects such as the ones we’ve been experiencing and thru trial and error, it may take several different ones to find the right one.

He’s always been hyper, but never so bad that he would be too busy to eat or sleep and bouncing off the walls or invading others personal space such as his peers at school. And because he just started preschool this year, a baseline of data needed to be established before seeing if ADHD played a role in the hyperactivity. After consulting with his teachers and medical specialists, ADHD was confirmed in March of 2018. The seizure meds had seemed to exacerbate the symptoms.

Even through all 5 diagnoses, he is still  full of wonder and adventure, our little blessing.  Yes, some days are very challenging and difficult to find joy when looking on the surface, but if you take the time to get to know him and see  the joy in his eyes and the love he has to offer, he isn’t any different than any other toddler. He is pretty amazing that he holds it together so well and many days when I get tired and wish he didn’t have to follow a medication schedule or have extra therapy to help him learn and blossom, I am forever grateful he has treatments that help.

Two years ago, he was nonverbal and. we had no idea how much he understood and/or if he ever would. Now he plucks dandelions out of the yard and with beaming pride brings them to me to smell and keep!

I will continue to advocate for him. I will continue to educate myself, our family and friends on every special need he has, but most of all, I will continue to thank God that HE blessed our family with this bright eyed babe four years ago. Our life is so much richer.

Thank you for continuing to follow our journey and being so supportive and encouraging!

May you always know how much Jesus loves you~right where you are in this moment.

Many blessings to all of you~Carlene

#HopeAlwaysHaveFaith

 

 

 

 

Cry Out to Jesus

I’ve been crying out to Jesus in despair for several hours. Living with autism isn’t for the faint of heart. In the last four hours, I’ve been spit on numerous times, hit repeatedly, had blocks, toy cars, a toy cash register and anything else he could find to throw at me. My hair has been twisted and pulled, and stabbed with a fork repeatedly and raising my voice doesn’t help and letting the tears and sobs come doesn’t either.

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I don’t know what triggers these times or why Tyson goes thru these moments. I don’t like them and I hate that in those moments I just want to give up and throw in the towel, but I can’t. He is depending on me to get him through all he goes thru. He depends on all the people in his life to help him learn and grow.

Since he came into our lives almost four years ago, our lives have changed drastically from what we had imagined. There is no time to just sit with my husband and watch a movie, or take walks or have any type of just us time. When Tyson is asleep, that’s when we rest or frantically try to accomplish housework or tackle projects we can’t do when he’s awake.

He plays hard, throws himself on the floor, bangs into and on things, runs into walls, constantly climbing and jumping, banging his head on the floor, into the back of the chair and into other people.

His attention span is only a few minutes unless he is viewing videos or television shows he likes, but we know too much screen time is not good for any child, especially with one that seizures can be triggered by videos he watches depending on the content.

I love this high energy child that is constantly wanting to go places and repeatedly talk about what he knows. Vacuum cleaners are his favorite subject. He wears headphones when they are turned on, but when they are turned off, they are his favorite “toy” of all time. We have to limit his time because of the fixation. He can share with you every single detail and when its time to return them to their storage area, he clings to the vacuum, becomes angry and agitated and won’t let go.

We appear like a typical family outside of the walls of our home. We work really hard to keep him safe and keep him from having outburst or hurting others when we are out. He is always holding our hands, wearing a safety harness, in a shopping cart or any other means necessary to go out into the world. If we go to a park setting, there must be at least three people with him or the area must be fenced in. He loves going and playing at the park, up and down the slides; swinging with wild abandon, laughing and wanting more.

Our home is never clean. Never spotless. Every day, there are toys mixed with food particles from him being angry and throwing bowls of food off the table because he isn’t hungry or doesn’t want what was placed before him. Highchairs don’t contain him anymore. He’s too smart for the five point harness. He knows if can’t get the latches undone, he can wriggle out of the straps with a little bit of determination and grit.

He is so smart. He can figure just about anything out on how it goes together or how it comes apart. He can count to 13 on his own, the number of stairs in our home. He can recite the alphabet and label each letter if asked. He calls himself Ty. Tyson is too hard for him to say right now. He can cook the most amazing meals in his tiny kitchen. He loves mixing and pretending to cook just as much as he likes helping me mix concoctions in my kitchen.

Since beginning this post, most of his toys have been bagged and removed to another room. The TV has been shut off. Music has been turned on. I’ve had to stop writing multiple times to get him off of furniture he should not be standing on, out of paperwork cabinets that hold his care notebooks and IEP plans. Tell him no repeatedly because he wants to make raspberry sounds and realizes he can spray you with his saliva. Position my chair in such a way that he can’t climb on my desk to mess with the mini-blinds covering the window above my head.

In between, he’s had a cup of blueberry yogurt and a cup of milk for a snack and I’m using this opportunity to help him say blueberry yogurt. His language disorder for expressive language is a struggle. His version of blueberry yogurt is boo og. Every moment he speaks is used for speech language therapy. Those moments don’t just happen at school or in speech therapy appointments, every moment he’s awake is when it happens.

Ugh!!! He just drew on his feet with a green marker and dumped his yogurt on the desk! So much for the calm.

The struggle is real. Its a glimpse into living with autism. A mere 5 hours out of 24. One moment he is hugging me, giving kisses and the next he is trying to break out the front door glass with his wooden toy hammer.

I am looking forward to when his batteries run out so I can take a shower and just sit still for more than one second. Right now we need to be in a padded room with nothing but us. I just was hit in the head with his tiny shoes that pack a powerful punch.

My joy comes from the Lord. Not my circumstances. I am so very thankful I have Jesus in my corner.

To the other families that “do autism” everyday, please know you are not alone in your journey. Even though it feels like it.

To everyone, may you know how much Jesus loves you~in every moment you live.

#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