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

 

 

 

 

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I Never Thought It was Possible

For the past 7 1/2 years, I have struggled to live with unending pain, chronic pain that never went away. It was always right there in the midst of my life. I worked full time, in pain. From the moment I woke up until I dozed off at night, it had become part of who I was. I never went anywhere that pain did not accompany me. And the fatigue that came along with the many sleepless nights and bouts of insomnia was something I couldn’t begin to explain to others if they didn’t suffer from it themselves. It wasn’t being tired and taking a nap would fix. It was the type of fatigue that made me sick to my stomach, brought on migraines, depression, and hopelessness.

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Many of you that read this blog know how real the struggle has been for me. And if you know me at all, you know I rely heavily on Jesus Christ, my Savior to get me through everything.  He led me to a group of amazing women that have helped me to change my life, and heal my body from the inside out.

I have read in the past how important it is to have a healthy gut, but I have never been much of a “health nut” and couldn’t understand how important it is to have good gut flora and bacteria in my system versus the bad that has been hanging out there for a while now.  So, when my friend asked me if I wanted to try some supplements that she knew had worked for people living with chronic pain and fibromyalgia, I can honestly say I was pretty skeptical. I thought how can herbal supplements help me feel better? You would think the medical community would want you to know about these if they really worked. I decided I didn’t have anything to lose. So I agreed to try these “miracle” capsules. What was one more “pill”? I already take 12 different prescription medications to keep me functioning, why not!

On June 12th, I started taking these supplements, thinking nothing would happen, but willing to give it a shot. Now 3 1/2 weeks in, I wish I had known about them before now.

I am on a regimen of supplements that help to curb cravings, cleanse and detox my system, help to promote the growth of good gut microflora, and supports healthy glucose metabolism. Among those, I am also taking Omega 3’s that have no fishy smell or aftertaste, a multivitamin for the wellness of the entire body and two products that help with exertion, fatigue and keeping your nervous system healthy.  As a result, I no longer have any fibromyalgia pain. NONE. NO PAIN. No fatigue either, as my sleep hours have gone from maybe 2 hours a night to 6-7 hours per night. And if that isn’t enough, I am also losing weight!!!

*These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease.

I can’t look back at to “I wish I had known sooner”, but I can look forward to what exciting things are to come. Even my arthritic pain in my knees and hips is improving! So I would definitely be willing to say these are miracles in a bottle! The most amazing thing to me and something that really sold me on trying these products is they are plant based, no GMO, gluten free and with the packet of drink mix, I use once a day, it has a sweet taste that is refreshing and yummy, sweetened with the Stevia plant. There are no chemicals in these supplements.

I still sit here and shake my head in amazement, that after only taking for 3 1/2 weeks I feel so good!!! Being healthy has never been so much fun!  For the first time in my life, since the Fibromyalgia diagnosis, 7 years ago, I can see light at the end of the tunnel. There is hope.

I believe so much in this product line, that I have become an Ambassador for the company! They have many more products that I have not even tried, but have heard amazing results from friends. If you are looking for an alternative to prescription drugs, and looking for a way to be your very best and live a healthy life, I would love to speak with you and see how I can help.

God led me to these women and in turn, they have loved me and encouraged me every single day/. God is in all the details. I am so blessed and I would love to be a blessing to you.

It should really be no surprise to me as God created all living things, plants included, that these supplements are good for me and my body.

May you know how much Jesus Loves You! #HopeAlwaysHaveFaith

Blessings to all!

In Deep

John 10:10New Living Translation (NLT)

10 The thief’s purpose is to steal and kill and destroy. My purpose is to give them a rich and satisfying life.

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I’ve been sitting her this morning, thinking about all the things going on around me, in my little world. We all have our own ways of coping and dealing with life and everything life throws at us, even if we didn’t ask to be part of something. And I’ve come to realize that I can choose to turn a blind eye to things that bother me or I can seek the Lord and His guidance.

I love and I love deeply. That’s the only way for me to do it. It’s not about what the rest of the world thinks, it’s about what my heart feels. I weep for the homeless and for the many people in my area that die from heroin overdoses every day. I weep because I don’t know how to fix it. I’ve been fortunate, not to have lost anyone close to me, but I have many friends and their families that have been affected by this drug. Just this morning, I read a news headline that 10 people lost their lives to heroin overdose in the last 24 hours. Losing 1 is too much, but 10 is a horrific thought. I didn’t know any of these people, but I weep for their families, friends and for them. I don’t understand what changed in their lives that they thought the heroin or any other drug for that matter could make it all better.

All of us need love. It’s part of our DNA. That’s how God created us. Every time I think about all the evils in this world, I think about this song What the World Needs Now is love. Unconditional love. Period. It isn’t easy loving someone without conditions, but if we want to be like Jesus Christ, that is exactly what we need to do, what we must do.

I live within miles of the number one ranked city (Dayton, OH) in the nation for Heroin addiction overdose and death. The only thing I know to do is to love on people. Meet them in their pain and slowly build relationships with them so they know that even when they shoot up, you still love them. We are all broken, we all have demons we face in our lives, I feel so strongly about this, but I still don’t have any answers. The only answer I keep hearing is we must love one another, deeply. We must look past our faults, our weakness. We must be willing to step out of our cozy comfort zones and reach out to the hurting, the dying and the lost. We must continue to pray for our world. Our small little worlds make up the big world we live in. Each of us must put on Jesus every day when we awaken and reach out in any way we can to stop this evil and that’s what it is, plain and simple, evil.

According to the Montgomery County Coroner’s office, via a news release on WDTN Channel 2, Dayton, Ohio (01/31/2017), 355 overdose deaths in 2016; the majority being white and in their 30’s. The actual amount of deaths was 349 according to this report from the Montgomery County Coroner’s office. As I read the reports and look at those numbers, just for the area I live in, I am astounded. This says nothing of the national problem we have. And I weep.

The hardest drug I have ever tried and lived to tell about was Nicotine from smoking cigarettes. It too is habitual and it too kills, but slowly. I’ve heard if you have just one “hit” of heroin or any other drug, depending on its chemical makeup and strength, it can kill. For some people who feel the need to do drugs, doing it just once might be their last time.

Here in our area, there is an organization that is slowly making a difference in the lives of families and addicts, with resources to help them succeed in life. Kudos to FOA Families of Addicts.

There is hope. There is always hope. Hope Over Heroin is a ministry collaborative born out of a need to do something to save lives, to educate others and to give hope in the darkest of situations. They are a National organization that is available with resources to guide you.

If you or someone you love is addicted,  please know there is help. Reach out.  You may contact the 24 Hour Heroin Addiction Hotline, call 1-888-966-8404 and chat with a live agent anonymously. If you have lost someone you love to a drug overdose, please accept my sincerest condolences, I weep with you.

Jesus can turn any mess into a message of Hope. #HopeAlways#HaveFaith

Blessings to you.

Addition to post edited on 4/22/2107

When I orginially wrote this I did not know anyone that had succumbed to a heroin overdose. Sadly, earlier this evening I received news that a friend’s son has passed away as a result of a heroin overdose. Rest in Peace James Williford.