Acceptance Is Needed

Genesis 1:27 New Living Translation (NLT)
27 So God created human beings[a] in his own image.
In the image of God he created them;
male and female he created them.

April is Autism Awareness Month, but what I propose is let’s change it to Autism Acceptance month!   Awareness is okay, but acceptance is what is needed.  There are so many autistic individuals that hear ‘there isn’t a cure’ or ‘we don’t know what causes autism’ and for many individuals on the autism spectrum, they don’t want to be cured; they want to be recognized as individuals who have neurological differences and their brains are wired differently, but there isn’t anything wrong with them.  And guess what, they’re right. autism symbol

Tyson is still the same boy we loved before he was diagnosed with Autism Spectrum Disorder. He has had many challenges and he will, most likely, face challenges as he grows older because of the autism, but having this neurological disorder doesn’t make him less than someone without it, it just means he needs extra help.

When Tyson was diagnosed in July of 2016, he was diagnosed as level 2, meaning he would require substantial support. He has made great strides through intensive home and outpatient therapy, preschool and has added ABA to his list of supports. He no longer needs PECS (Picture Exchange Communication System) or sign language to communicate as he has found his voice. We are so thankful for and happy for him that he has. Communication is a big component of Autism. Some people are nonverbal indefinitely, other’s use visual supports and sign language or ACC devices to communicate.

sample pecs

Augmentative and alternative communication (AAC) is an umbrella term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language.

Social cues is another big area where many autistic individuals have a difficult time. Depending on the individual they may learn how to ‘act’ like their peers and try to blend in; for others slang language or sarcasm is totally lost on them and they don’t understand why you can’t say what you mean, instead of ‘beating around the bush.’ Just be straight forward and say it! For Tyson, he is a very social person when he knows the people, but when we are in a waiting room or a store, he tends to hide and shy away from people. Too many people cause him to be afraid or have anxiety. Even places we go all the time, like outpatient speech therapy.

Sensory processing comes into play for a lot of individuals on the Autism Spectrum. Everyone is different. Bright lights, loud noises, the hum of fluorescent lights, hair dryers, vacuum cleaners, lots of people talking in a restaurant, too many people in one place –  these are just some of the things people can be overwhelmed by and if they become overstimulated or overloaded, a meltdown may occur.

Our Autism Home

Meltdowns are totally different than temper tantrums. A temper tantrum is a reaction to not getting something you want and a person throwing a fit looking for a reaction or response to it.  A meltdown is a neurological response to overload and they have no control over it happening. A meltdown looks different for every individual.

Stimming is a term that most people don’t understand or understand the reason why many autistic individuals stim. Lots of neurotypical people stim but usually in a more quiet way.  For instance, if you are the type of person that gets nervous in a meeting at work, you may tap your foot or click your pen. But most NT people know when to stop. For autistic individuals, stimming is a way to self-soothe when everything becomes too much to handle. Some people flap their hands, jump up and down, spin around, hum, make noises only known to them and their loved ones, dance and the list goes on. For every individual on the spectrum, there are just as many different ways to stim. The only time I have stopped Tyson from any particular stim is if he will hurt himself. Then redirection is necessary.

The one saying that holds true in the Autism community is “If you have met one person with autism, you have met one person with autism.” There are families with multiple people that have autism and not everyone in the family will deal with the same challenges or respond the same way.  Each case is individual.

The last thing I want to say about this today is please be aware that parents/grandparents/caregivers of children/adults of autism don’t have all the answers, they have the answers that work for their specific human. And sometime’s they don’t even have those. It is very exhausting to fight a system to get services, some due to long waiting lists or fighting with the insurance company to approve it or finding services that will be approved.

There are many different types of therapies that can help people on the spectrum, but not every person needs every therapy available and not every therapy available helps every person. To date, there are no medications for autism. There are many co-morbid conditions that some people with autism have, such as ADHD or anxiety/depression and there are medications for those; as well as many holistic approaches to help people.

The Lord God created all of us.  None of us are exactly alike. All of us are “wired” the way He chose for us to be. Please think about that the next time you meet an individual with who is Autistic.

I know I have only touched on the basics of Autism, but this is only the first of the month.

May you know how much Jesus Loves You! Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHave Faith

Many blessings~Carlene

 

 

 

 

 

 

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JOY

1 Thessalonians 5:15-19 New International Version (NIV)
15 Make sure that nobody pays back wrong for wrong, but always strive to do what is good for each other and for everyone else.

16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

19 Do not quench the Spirit.

Joy comes from the Lord. Joy does not come or happen because of our circumstances and thank the Heavens for that.  If we depended on life’s circumstances to provide Joy in our lives, most times we would be sadly disappointed.

img_20190220_165052_101

Joy is a fruit of the Holy Spirit.  It is not something you can turn on and off at will. It is a gift from the Holy Spirit.  I hear so many people say that they can’t find their joy or have no idea what joy looks like because their lives are so hard or difficult.  Joy has nothing to do with any of that.

It took me many years of prayerful time with the Lord and leaning on more mature Christians who know the Word and could counsel me in Godly ways to understand Joy isn’t something that happens.  It is just a part of who we are. If you are a believer in Jesus and profess to be a Christian and live, walk, eat and breathe a Christ-like existence, you have Joy. Period.  There will be times you can’t seem to grasp it. Times you don’t feel very joyful at all, but it’s there.

If I depended on life to grant me the gift of joy, I would be hard pressed to find it most days.  Happiness comes and goes but the Joy of the Lord is forever.

The past few weeks have been blessings and blessings with challenges or opportunities, I guess if I am being my optimistic, positive self. Our fifth grandchild, our second granddaughter blessed our lives. I call her my little peanut.  She is so tiny and precious. Just weighing a little over 7 pounds. She came into this world, with a good set of lungs and even a little bit of stubbornness. She loves when its time to eat; a little bit of a guzzler, can’t seem to get enough, but refuses to burp, which has been quite a challenge. But she doesn’t cry unless she’s hungry or needs to be changed. She has bright eyes and loves to scoot around on her back when lying in her bassinet. She almost reminds me of a “game-spinner”.  It doesn’t matter what position you lay her on her back, as she gets settled, she usually ends up facing the other way and she is just two weeks old today!

Being able to be in the delivery room, while our daughter gave birth, was so joyous of an occasion. The first time around with her son, Tyson, my other little buddy, that you have read about, I was banished out of her sight. Because I am a crier. I can cry at the drop of a hat. It can be something as simple as a cute commercial on television or something that isn’t even real.  With Tyson, for me, seeing my first-born child giving birth, I was so overcome with emotions, tears were streaming down my face and she couldn’t handle seeing those tears and I was given strict instructions, “Mom, if you are going to cry, you’re going have to back up, I don’t want to see you crying!” So, even though I was in the room to witness his birth, I wasn’t right by her side.

With our tiny Emmalin, I sat and held her hand, bound and determined, that no matter what, I would not let the tears spill out. And I held them at bay.  This time it was watching a miracle.  The miracle of watching our daughter give birth naturally (all the while, observing the epidural not work, pain meds do nothing to alleviate her pain of the harrowing back labor she was experiencing) with pure love, sheer grit, and determination to bring her daughter into view, was one of the most beautiful sights, this grandma’s eyes have ever seen! Praying and thanking Jesus for allowing me to watch and helping me to conceal my tears of joy. And realizing what a strong woman our daughter is. Even though she usually disagrees on being strong, this time she was strong and earned the respect of her parents, her older sisters, and her brother.

Ty & Emma
Big brother holding baby sister/Ty & Emma

As our family is growing, and we are learning new routines, Tyson is doing is best to be a good big brother. There are many challenges that go along with bringing a baby home to a home with a toddler that has had the rule of the territory for four and a half years. And while he proclaims to everyone and anyone, that’s “his baby”, he doesn’t understand why she can’t get on the floor and play with him or why he isn’t allowed to carry her around like a rag doll or why it’s not a good idea to poke her with his fingers in her face.

As we are ever vigilant, hyper-vigilance has become our new norm when he is awake as we have no idea what he may or may not do next. The jealousy of a new baby isn’t as noticeable as I thought it might be, because his mom and my husband and I are making special times for him too and there are many days you will find the baby in her arms, while she is sitting on the couch and him right beside them as close as he can get.  As with everything new for him, it will take some time for him to realize how “babies” actually work. He doesn’t comprehend why she can’t share goldfish crackers with him, but I think it’s great that he wants to share with her, just the same.

I am doing my best to hope and pray that the similarities I notice with Emmalin and Tyson are because they are siblings and not for any other reason, but it has always been on the forefront of my mind if she too will have some or all of the special needs he has and I continually pray that whatever needs she has, God, will continue to equip us to care for them as they need.

As an update for Tyson, he is thriving at his ABA (applied behavior analysis) therapy sessions. He loves going and right now he is attending 3 afternoons a week after he gets home from school.  On days when the weather closes the center, he is sad and doesn’t understand why he can’t go. As we continue to add more structure to his day, his aggressive behaviors and sensory meltdowns are not as bad. Instead of 6 hours a day dealing with them, some days it may only be a couple of hours to only 30 minutes. What a lifesaver this has been for all of us; as well as changing to ADHD medications that are working better for him than the ones he was previously taking.  We have also found, that playing with dominoes that his great-grandmother gifted him last year, can usually keep him focused and entertained for a while, without bouts of throwing or screaming.

Galatians 5:22 New Living Translation (NLT)
22 But the Holy Spirit produces this kind of fruit in our lives: love, joy, peace, patience, kindness, goodness, faithfulness,

May you know how much Jesus Loves you~right now and always! He can turn any mess into a message and any test into a testimony.  #HopeAlwaysHaveFaith

Blessings until next time~Carlene

 

 

 

 

 

Moving Forward

Revelation 21:4 
‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

I look forward to the day when Jesus returns as He promises in His Word. I eagerly anticipate when there will be no more pain, no more tears of sorrow and mourning will be ended once and for all. 

Earlier this week, a dark cloud appeared in our lives and reminded us that life is but a fleeting moment here on earth. That just as there is a time for being born, there is also a time to die. It was with great sadness, my father-in-law drew his last breath. While we know, he is in Heaven with The Father, it does not make it any easier for the family members that are left behind. While we can rejoice in knowing, we will see him again, the ache that hangs onto your heart and the tears that are near the surface of spilling out, that is a sorrow that will take years to get over. 

When I was younger, I always heard that”time heals all wounds”.  I know, now as an adult, that it isn’t the case, exactly. I know that one of the reasons grief is so hard and messy is that when you grieve the loss of someone that you love and care deeply for, there is no time frame for when that grief stops. I lost my own father three years ago and he is always on my mind. I know that when it was time for him to leave our presence and go to the presence of Jesus, he no longer suffered or struggled with his pain and labored breathing, and in that essence, he was in a much better place.  And I also know that no amount of preparing yourself for the inevitability of a loved one’s time is drawing near, cannot prepare your heart for the sorrow it holds when their time has come. 

Each and every person deals and handles grief differently. There is no right or wrong way to grieve.  Today, as I surveyed the space within the room where a time of hugs, laughter, and tears were erupting, I realized how short life is. Every person on this earth touches the hearts of others, in many ways.  Some experiences are pure joy, while others are hard lessons to learn and some are sad. I have learned that no matter how much time you have to live your life, living it to the fullest means not leaving this earth with regrets. Or living in the “I wish I had done________” or “What if?”.

Cherish your family, make amends if needed, love deeply. At the end that is all that matters. Loving each other for the time we are given on this earth. Regrets don’t have to be if we choose to live in the abundance of love. Forgive others, hold dear the memories and treasures of the time you have with those that make up your tribe. Be thankful and grateful that you were blessed to be part of their life. Don’t be afraid to speak their name or share a memory or story of why they were so special in your life. 

I have found, in my experience with loss, as you share what you loved about the person you’ve lost, not only does that piece of your heart that feels like it will never be the same again, start to fill with love because you had them in your life, the sorrow does become easier to live with. It’s always there, but in order to continue living your life, some days you have to tuck it away in a special place in your soul and some days you allow it to run freely because you just need to do that. That’s okay.  Every one of us grieves and processes things differently.

Saying goodbye is never easy. Tomorrow we will say our final farewell to a man that meant so much to so many. And I will cherish all the memories that we shared over the past 24 years. I will share those moments with our children and grandchildren so our family history will continue with each generation. 

We love you, dad. We will miss you. We are happy that you are home with mom now and we look forward to when we will see you again. Thanks for being a part of our lives. 

Dad & Mom Wooddell

In loving memory of Donald K. “Woody” Wooddell. First breath taken on 10/26/31 and last breath drawn on 11/12/18.

May you know how much Jesus loves you~right now~in this moment. Jesus can turn any mess into a message and any test into a testimony. #HopeAlwaysHave Faith

Blessings until next time~Carlene

Daily Life Struggles

Proverbs 15:15 The Message (MSG)

15 A miserable heart means a miserable life;
a cheerful heart fills the day with song.

 

With joy in my heart, I still struggle.  Joy comes from the Lord and no one can take that from me. I can choose to live with a joyful heart and know that I will still face many struggles and trials, but still, love and be the person I am because God has placed Joy in my heart or I can choose to live without joy and be miserable always.

Over the weekend, the fibromyalgia flared up and reared its ugly head. The constant pain that never fully leaves, but some days are so rough, that just breathing and moving, make you question if getting out of bed was the right thing to do. And knowing that if you choose to remain in your bed, how many things will face you to take care of once you arise.  Most of us that have fibromyalgia know that sometimes the best we can do for ourselves is to stay in our beds or the comfy places we have carved out in our homes. We do not have the energy to get dressed, shower, or do any extra. Getting up takes every ounce of energy just to be able to spend time with our families, and going anywhere is totally out of the question. That was me on Saturday. I showed up, in my nightgown and I stayed in my nightgown all day. I KNEW I was not going out into the cold for any reason and I saw no point in causing myself more pain to get dressed simply because that was expected of me.

I have dealt with FM for 10 years. And for the past year, it has been manageable. But for the past several months, I have noticed since stopping the natural supplements I was using, my inflammation throughout my body and the pain levels have been increasing again.  I choose to work through my pain in prayer and time with the Lord. Limiting what I do. Staying in more than going out and while dealing with my own health battles, helping our grandson through his.

He has come a long way in the past two years since being diagnosed with Autism Spectrum Disorder. He talks now. He is becoming very independent, but also very demanding. He is four. When he wants something, he wants it now. And even though he asks for something correctly and always says please, he does not understand when he is told no.  He tries again, to word it differently or even smile and say please and sometime’s the answer is still no. I know it must be confusing, because he is being polite, and saying please, but simply does not understand that even if you do everything right, sometime’s the answer will still be no.

So imagine being in such excruciating pain, that you do not want anyone touching you; let alone a four-year-old jumping on you, bouncing into you, climbing on you, but you don’t dare say no because you don’t want to make him feel unloved. He doesn’t understand what it means when I say “that hurts” or “please don’t do that”. And he loves to give big hugs, he loves deep pressure. He loves climbing behind me on the sofa and me leaning back on him, but all I want to do is cry because every amount of playtime for him is pain time for me. But I do it because this brings him comfort and joy. Love is powerful that way.

I left my home on Sunday to go to church. I needed that more than I knew. I didn’t realize how much I missed the interaction with others until I was there. I interact with people daily through social media and texting, but it just isn’t the same as being able to see smiles, receive hugs and just be loved on for simply being you. By the time, my husband and I arrived at the church with our grandson in tow, we were both emotional. My emotions were creeping near the surface, ready to spill out in the form of tears. My husband was frustrated because our grandson is a runner and any chance he gets, he bolts. Even though he had his safety harness on, and my husband was holding onto the strap, he wasn’t ready to go on a run with him.

And Tyson has learned that if we are trying to pick him up from the ground, and we want him to stand, all he has to do is bend his knees when we are lifting him and he becomes heavier to maneuver.  He is big for his age. He’s four, but weighs 50 pounds and is over three and a half feet tall. Carrying him for any length of time is strenuous to us “old” folks. Wrestling him into his car seat so we can go anywhere is an everyday battle. Once in the seat, he does ok, but getting him in the seat is a battle, every single time. And he has to be in a five-point harness because otherwise he would be climbing all over the vehicle and exploring.  Safety and danger are words he does not understand. He always wants to sit in a regular seat with just a seatbelt but we know that won’t happen until he is much older.

Walking into the church lobby, as we were greeted, the tears started welling up, and I just didn’t have the strength to hold them back or hide behind a pasted-on smile and pretend everything was good. I was tired. Tired of my own pains, tired of always struggling with Tyson when we need to leave the house. Tired of always being the positive one. We all have our breaking point. Yesterday was mine.  I know the devil will do anything he can to try and break me. For the past three weeks, I have opted not to leave the house on Sunday. I’ve made excuses, stayed home, watched our church’s live stream of the sermon and remain isolated because that was so much simpler than struggling with him to go anywhere. In doing that, though, I lost out on connecting with other people and being surrounded by people that love us through all our struggles; people that are compassionate and caring and offer to help in any way they can.

Sailing Life

I think for most of us that live with autistic individuals it’s not that we don’t welcome the offers of help or hope that someone will be willing to help, it’s that we don’t know what kind of help to ask for. Our home is “proofed” for him. We have specialized gates, taller than him to keep him safe and confined to an area of the home where there isn’t danger. We have learned not to have “pretty” things that he can break. We know if he is outside, he must always be (1) holding your hand tightly (2) have his safety harness on (3) be secured in his specialty stroller with a vest and five-point harness or (4) be in a fenced-in area where no escape is possible. We know he has food aversions and sensitivities. We must always have his emergency seizure medications at the ready and available. And the list goes on. Going anywhere, we must still take a change of clothes bag and appropriate necessities, because he isn’t potty trained yet. And if someone opts to take him for a few hours, what if he hurts himself, has a seizure, breaks something, gets sick. Yes, he is verbal now. Can he communicate everything he needs to? No.

The one thing I can offer to those willing to ask: please don’t stop asking. For me, it’s hard to ask for help for anything for myself, Tyson or our family. But I am learning to accept it. Accepting prayers from others is easy. I love to pray for others too. Accepting offers of helping with Tyson is getting easier, but I know how challenging his behaviors can be and I know that we never know from one moment to the next what he understands and what he doesn’t, but we do know he is very smart and intelligent in many ways. And letting go and accepting help may not be in my nature, but being part of a community of people that love us regardless of our challenges does truly make all the difference in the world.

May you know how much Jesus Loves You~right now~right at this moment and always.

Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Blessings until next time~Carlene

 

 

For My Mom~Happy Birthday

Exodus 20:12  New International Version (NIV)
12 “Honor your father and your mother, so that you may live long in the land the Lord your God is giving you.

Today I am choosing to celebrate my most favorite teacher of all time. She helped to shape and mold me into the woman I am today. Without her in my life and showing me the ropes of life, teaching me about the ups and downs a woman will face throughout her life; understanding the heartaches and pains a mother goes through; I would not be the person I am.

This woman has given selflessly to more than just me. She has mothered many children as her own, many that have adopted her as a second mom, always willing to listen and just be there. No answers for the many problems or challenges that any of us have faced, but offering two simple suggestions:

  1.  Always Be Kind – you never know what others are going through.
  2.  Give it to God – and leave it there. Don’t pick it back up and then give it back. Give your cares and fears and worries to God. Pray and wait for His answer. And while you are praying, I will pray too.

She is always available to listen, no matter how many miles separate us. She taught me how to be self-sufficient and independent. She taught me tact, which wasn’t easy since I have always been the type of person to speak my mind, sometime’s without a filter in place. She taught me anger has a place, but not in the form of raised voices and slamming doors. That anger can be justified if you can use it wisely to learn from or teach with. But to be angry and thoughtless, only causes pain and nothing good or helpful can come from that.

She has taught me to always listen, look at the other’s point of view before speaking and show grace to others. She exemplifies that grace daily. She is the most non-judgemental person I have ever met. She reminded me when my babies were young to hold them, rock them, love them. When they cry, pick them up. They need that sense of security. It will not spoil them. It will help them learn what love feels like. To be loved by another human being is the greatest gift of all, even through tears.

This woman has my heart. She has had my heart since I was in her womb. This woman is my mother. Today is her birthday. I love her with so much love there are not enough words to convey what she means to me and not enough time to share it with you.

I have been very fortunate that I grew up with a mom that chose love over hate. A mother that chose to be and live the way she did regardless of her circumstances before she was a wife and mother. (She had a very hard and abusive childhood the first 8/9 years of her life and at age 10 she was adopted and well cared for and loved and learned what love should be.) She chose to be the parent that would teach and model for her children what she missed out on in her early years. She chose not to let the abuse/neglect she endured to go on with her.

Ours was the home where neighborhood friends came, and she treated them just as she treated her own children. Life wasn’t a bed of roses all the time. There was discipline. There were chores. There were consequences but always seasoned with grace and kindness. Life lessons learned early that have carried my siblings and me all our lives.

She has always been my greatest confidant and as I became an adult and a wife and mother, grandmother, the greatest friend I have. We don’t always see eye to eye but she is always available to chat no matter how far away she lives.

I wish we lived closer than 975 miles from one another, but we don’t. I am thankful for wi-fi and internet, 4G phone services, video conferencing and all the technology that keeps us close when we cannot be together face to face.

mom and me july 2018
Mom and I visiting daddy on his birthday July 2018

Mom, today I hope that as you celebrate the 75 years you have been on this earth that you will know without a doubt that my love for you grows every day more and more. I long for the day when I can be half the woman you are. There are not enough ways that I can express how much you mean to me and how I wish we could be together to celebrate your special day. I know you will be with friends and I know you know you are loved so very much. I am so very thankful that God blessed me with you as my mom! I am hugging you from afar until the day we can be with one another face to face and I can wrap my arms around you and hug you back.  Happy Birthday, Mom~I Love You!!!

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

Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Blessings to all~Carlene

 

 

 

 

My Catherine the Great

Proverbs 31:11-31 English Standard Version (ESV)
11 The heart of her husband trusts in her,
and he will have no lack of gain.
12 She does him good, and not harm,
all the days of her life.
13 She seeks wool and flax,
and works with willing hands.
14 She is like the ships of the merchant;
she brings her food from afar.
15 She rises while it is yet night
and provides food for her household
and portions for her maidens.
16 She considers a field and buys it;
with the fruit of her hands she plants a vineyard.
17 She dresses herself[a] with strength
and makes her arms strong.
18 She perceives that her merchandise is profitable.
Her lamp does not go out at night.
19 She puts her hands to the distaff,
and her hands hold the spindle.
20 She opens her hand to the poor
and reaches out her hands to the needy.
21 She is not afraid of snow for her household,
for all her household are clothed in scarlet.[b]
22 She makes bed coverings for herself;
her clothing is fine linen and purple.
23 Her husband is known in the gates
when he sits among the elders of the land.
24 She makes linen garments and sells them;
she delivers sashes to the merchant.
25 Strength and dignity are her clothing,
and she laughs at the time to come.
26 She opens her mouth with wisdom,
and the teaching of kindness is on her tongue.
27 She looks well to the ways of her household
and does not eat the bread of idleness.
28 Her children rise up and call her blessed;
her husband also, and he praises her:
29 “Many women have done excellently,
but you surpass them all.”
30 Charm is deceitful, and beauty is vain,
but a woman who fears the Lord is to be praised.
31 Give her of the fruit of her hands,
and let her works praise her in the gates

She is beautiful inside and out.

She is loving and caring.

She is kind and compassionate.

She is fiercely protective of those she loves and cares about.

She is full of passion for what she believes in and always stands up for her beliefs.

She is strong and does not easily back down.

She is determined and does not quit, that is not an option and she will find her way around any obstacle in her path.

She is an artist with a flair for repurposing items that people see no value in. She brings old things back to life.

She is a great listener and works toward a solution, rather than complain about a problem.

She is an amazing mom of three college graduates who are changing the world around them.

She is a wife, a mom,  an aunt, a sister, and a daughter.

She is an emergency 911 dispatcher who works more hours than should be humanly possible. The first voice you might hear, full of calm and reserve as she manages 500 things at once.

She is a former school bus driver that loved her riders as if they were her own children.

She is an animal lover and considers them family, not just pets.

She never has enough time to take care of herself, she is always caring for others and burning the candle at both ends.

She is wise beyond her years and has seen many things most people will never have to see.

She is faithful and will celebrate 29 years of marriage this month to her loving husband.

She was a cheerleading mom and advisor when her daughter was school age.

She loves her community and has a great tribe that she holds dear and close to her heart.

But one of the best things she is…..she is my sister. And I love her with all my heart and soul. Today is her birthday. I don’t see her as often as I would like, but I hope she knows how very proud I am of her, her accomplishments, which are too many to mention. I know she is always a phone call away. Our family is very blessed indeed!

Cathy

Catherine, I love you sis and I pray that today your birthday will be all you hope for and more! You deserve it! Much love~Carlene

 

May you know how much Jesus Loves You-right in this moment-right where you are! Jesus can turn any mess into a message of hope. #HopeAlwaysHaveFaith

Blessings to all!

 

 

 

 

He is Lost

Psalm 56:8 New Living Translation (NLT)
8 You keep track of all my sorrows.
You have collected all my tears in your bottle.
You have recorded each one in your book.

 

I’ve shed many tears in the past several months. We all have. And I cry out to Jesus a hundred times a day seeking guidance, wisdom, clarity, and discernment. I cry because the once happy child we love that lives in our home and most definitely in our hearts is missing in action. And the child that can’t tell us what’s wrong, has become angrier by the minute. We don’t know why, but he has. It’s so difficult to watch the decline in his moods and behaviors.

Tyson and Me
A moment of rest for T and Me

The words, “No!”, “That’s not okay!”, “That’s not acceptable.”, “We don’t do that.” fall on deaf ears. The constant repetition of trying to explain to this beautiful boy that it is not okay to hit, kick, scratch, punch, bite and be mean to others  or throw toys, plates, cups or any item he chooses to use as a weapon to hurt someone or break windows, electronic items; it’s not okay and he can’t do that. Trying to explain to him, once you have his attention (looking into each other’s eyes and asking him to stop, let’s calm down, dry his tears) that not only do we not want to be hurt, but we don’t want him to get hurt either is an everyday task.

He has always been hyper, ever since he started walking at ten months. He went from scooting to pulling himself up to standing and walking. He totally skipped out on crawling.  Even now, if he is playing on the floor, he rolls or scoots or somersaults his way through the room, unless he’s walking on his tiptoes or running at breakneck speed.  He has one speed and it’s all or nothing. And the nothing only happens when he is given medications to help him sleep.  Even when he is beyond exhaustion, sleep does not come without prescribed medications. His brain never shuts down.

Some friends, suggest putting him in timeout. That would be amazing if we could get him to sit still long enough to accomplish that. Today, I put myself in timeout. Sitting on the opposite side of the safety gate on the steps. He was still being supervised, but I needed a good cry. Trying to remain strong all the time, and not knowing when an outburst will occur is heartwrenching. The child that used to love to play with blocks, legos, cars flying down his racetrack, counting and having fun, I don’t know where he is. The child that loved to paint with watercolors, scribble all over the papers and practice using his scissors to cut, he’s lost.  I see him stand in front of me, but he’s not the same. The little boy that I could scoop up in my arms, squeeze him tight and we could count or recite the alphabet and talk to one another, I don’t see him much anymore. I see a child full of anger, aggression and for lack of another way to describe it totally overloaded in his mind all the time. Shutting down the television, turning off video devices, taking toys away and never giving them back, doesn’t seem to faze him. The music that used to lull him to sleep, while being rocked, he cries and doesn’t want the music very often.

The night terrors are not as bad as they used to be, now we deal with daytime terrors. Fully awake, but he can’t tell us what’s wrong. Yes, he has amassed many words, but unless he wants something, answering questions is still yes and no for the most part. He can answer to what his name is, the street he lives on, sometime’s the city and who lives with him.

He has been up, five times since being put to sleep tonight. Whimpering.  “Please hold me.” So I hold him, we sway back and forth. As he falls back asleep, and I think it’s okay to lie him down. Sleep eludes. The minute I laid him down, whimpers, “please hold me maw.” I’ve decided sleep will come for me once he boards the bus to preschool in the morning.

And as  I ruminate about all the changes in the past year for him, I often wonder what happened? Have all the seizures he has had, accompanied by medications known to cause aggressive behaviors and irritability caused this drastic change in my little buddy? Is it the medication he is prescribed for the aggressiveness with the autism? Is it a combination of the medications? But which is worse, having multiple seizures often or living with the behaviors? I have no answers and the specialists don’t seem to know either.

I’m considering everything and planning on going back to Essential Oil use to help relax and calm him down. It worked when he was younger, maybe that is a missing link. I know there are supplements that have been used to help and maybe it’s just possible that is what he is missing.  The developmental pediatrician and his neurologist ask if I can videotape his behavior, but when you are the target of the behavior, grabbing your smartphone and turning on video doesn’t occur to me. Keeping him safe and others safe is my first priority.

It has been recommended to talk to an ABA (Applied Behavior Analysis) therapist and see if that will help. I didn’t want to face that fact. But now, I must. We have to for him. Not knowing if his insurance will help with the cost or if we have to cut more corners than we have to pay for it, one more stress to be strong for. I do know, as tears stream down my face, I will do as much as I possibly can to help him. Loving him is the easy part. Knowing what to do next, and figuring everything out by trial and error is the worst. For him, as well as us.

I sit and wonder daily how difficult it must be that the only way that he can cope is to exhibit the behaviors he has. I wonder if the noise, lack of noise, the lights on and off, what is it that makes turn his world and our’s upside down? Can we reach him? I have faith and belief that God would not have let him come this far, only to lose it all and have to start over again.

Two years ago, there were two words. Very little interaction with others and the playtime was limited to large blocks his tiny hands could hold. His vocabulary has increased. He does engage with others, he can hold your gaze for more than a mere second, but the joy of playing, it’s lost. If he can’t throw a toy, he has no desire to play with it.

A  year ago, he was flourishing in his preschool class. Following a visual schedule, completing tasks, using listening skills and then midway through the year, it all changed. Once he started having his seizures and had to go on medications, he changed or they changed him.

And now, I look for glimpses of that little boy that laughed and giggled, would jump and spin for the pure joy of doing it. I miss him terribly.

My good friend asked if I know what causes all this. I don’t. I know that he lives every day with many Neurological disorders and maybe right now he is doing the best he can. I remind myself that Autism Spectrum Disorder has many challenges. I’m learning that Attention Deficit Hyperactivity Disorder isn’t just about focus, there are many symptoms I never knew were linked to ADHD. His Sensory Processing Disorder seems heightened more than ever and although his tonic-clonic (formerly grand mal) seizures are held at bay by the AED’s (Anti-Epileptic Drugs) he still has absence seizures, and as much as I would love to say he is just daydreaming as suggested by his Neurologist, I am not sure T even knows what daydreaming is or what it means. He’s 4 with a language disorder.

The one and the only area that his language is truly understood is when he talks to you about vacuum cleaners. That is what he fixates on. He has had toy ones, they don’t last very long. He’s rough on them. Two “real” vacuums in our home have succumbed to his mighty strength. He sweeps for a short period and then while pretending, he picks this heavy appliance up as if it was a feather and tosses it a few feet from him. And when he starts to do that, it is put away. He clings to it and has to be pried away from it kicking and screaming, “my sweep”.  Of all the things that he could fixate on, that was the farthest thing from my mind.

I’ve been silent about this. Not wanting to face that we have to find a way to help him. We have to teach him that the way he reacts and acts is not the best way for him. And we have to learn how to do that in his world. Because in our world, we are lost, too.

Lord Jesus, you know the struggles we are facing. Please help T and help us help him. We know how blessed we are to have him with us. We thank you for giving us the gift of this young child and trusting us to guide him. Guide us. Lead us. We want to see him bloom in only ways you know he can. Forgive us when we become frustrated and upset. Remind us that he too is frustrated. Thank you, God. In Your Name Jesus. Amen.

James 1:2-4 New Living Translation (NLT)

2 Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy. 3 For you know that when your faith is tested, your endurance has a chance to grow. 4 So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

May you know how much Jesus Loves You~right at this moment~as you are!

#HopeAlwaysHaveFaith

Until next time~blessings, Carlene