Monthly Archives: March 2019

He Comforts Me

Psalm 94:18-19 New Living Translation (NLT)
18 I cried out, “I am slipping!”
but your unfailing love, O Lord, supported me.
19 When doubts filled my mind,
your comfort gave me renewed hope and cheer.

 

man kneeling in front of cross

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I am so thankful that Jesus Christ loves me enough to be there each and every time I cry out to Him. It doesn’t matter the hour or day, He is always with me. Guiding me by His Holy Spirit, teaching me to trust in the process of things in life and always holding me up when I don’t feel I can go on.

Our grandson, Tyson has come so far since he received his Autism Spectrum Disorder diagnosis in 2016 but he has also faced many other challenges along the way and we, too, have had to endure many sleepless nights and heartache over the needs he has. As most of you know, when he was diagnosed, he was nonverbal. He said two words. Ma and Da, not mama or dada, just those two single syllable words. Everything else was a guessing game and very frustrating for all of us. But with intense Speech Therapy and many hours poured out of learning sign language and initiating communication with pictures, he is on his way to becoming a great speaker some day.  We rarely use pictures to communicate his wants and needs.  Pictures are still used as visual supports to help him transition and prepare for what’s to come in our daily life. He still uses the sign for “more” when he wants something, along with asking for more.  I am not sure if he thinks using the sign language along with speaking will actually get him more snacks, etc., but his memory is amazing! If he has seen something once, maybe twice, then he can recall it. We are even beginning to realize that he can read some things. Now we just have to figure out how to teach him to read in a way he understands. We will get there, I have no doubt.

I was always under the assumption, like most people, I suspect that if a person has a diagnosis of ADHD (attention deficit hyperactivity disorder) that meant they were too hyper to be focused on any one thing for very long. Boy, was I wrong! Although that is a part of the disorder, there is so much more to it than the term can express. Many people with ADHD have not only a hard time focusing, but can be overwhelmed rather quickly if they are given too much information at once. Their brains are wired differently than someone who doesn’t have ADHD and it takes them longer to process the information. Breaking tasks into steps is one way to help. There’s a great article in ADDitude Magazine that explains how a person’s brain with ADHD functions. Tyson has a combined type of ADHD: inattentive, hyperactive and impulsive.  He loses his focus very quickly unless it is something he loves. Right now he is very obsessive about any type of vacuum cleaner and ceiling fans.  He can tell you almost anything about them. How to put them together or install one, along with how each part works, but his attention span for many other things only last for a few seconds to minutes.  He is working with an ABA therapist to work on his focus issues and well as learning new ways to regulate his emotions in a safe and positive manner. And yes, he also takes ADHD medication to help him level out his emotions so he isn’t as aggressive and having a meltdown that lasts for 5 hours or more.  There wasn’t much doubt, ADHD played a role in his behaviors, but until he started school and input could be given from their perspective, we had to wait for that diagnosis to be official.

The language delays have shown improvement as he learns to speak and listen to spoken word. He has delays in areas of receptive and expressive language. I think the most frustrating thing for him is that when he tries to express something to us, we do not always understand what he is trying to say and multiple times of repeating it, he becomes mad and then refuses to talk to us or allow us to explain why we aren’t understanding. He also has a difficult time processing what is said to him. We still need to use short, concise statements. “Pick up toys.” versus “You need to pick up your toys and put them away.”  His beginning and middle sounds there has been quite a bit of improvement and now we start working on ending sounds. That is where I am finding the most difficulty.  I know he doesn’t always want to keep repeating words over and over, and I know he gets frustrated, but I know I can’t give up on him doing it. I know he can, with everything else he has learned and will learn, it takes time.

Within the last week, I have really been praying and trying to understand God’s plan for Tyson. God knows everything that will happen in Tyson’s life and ours, too, but sometime’s I wish there was a guidebook or cheat sheet I could take a peek at to know what to do when the next thing we need to be concerned about crops up.

When he was diagnosed with Epilepsy, I was pretty upset with God. I couldn’t figure out how in the world, was it fair or right for this kindhearted child to have to deal with so much crap. But God reminded me that He is in control and that I have to trust Him. And I am not in control. I think for me, as a caregiver to a special needs child, I want to make life as easy as possible for him. I hate that he has seizures. I hate that we have to force him to take seizure medication every day because it doesn’t smell great and Tyson has said it doesn’t taste good either. I will be glad when he can swallow pills.

And just when I thought I could possibly know all there was to know about Epileptic seizures where he was concerned, in the past week, he has had two that were totally different from anything he has had before. So as I was jotting down notes in his seizure diary, and getting ready to let his medical team know so it could be noted in his chart; I had no idea what kind it was. He has had multiple tonic-clonic seizures in the past. Absence seizures. But these were different. They appeared to be absence but then progressed into another kind.

He was staring and zoned out, much like someone would be when they are “daydreaming”.  That is a typical absence seizure. However, those never last for more than 30  seconds and that’s a long time for those. But then, he dropped what he was holding as his hand went limp and fell backward onto the couch cushion. No convulsions or rigid stiffness as in a tonic-clonic. He wasn’t jerking so I knew it was a myoclonic seizure. And his awareness was different too. He was unresponsive, which is normal for an absence seizure, but when it was over, he went right on doing what he had been and didn’t miss a beat.

I have learned since these last two seizure events that it was most likely a focal seizure (absence) that progressed into a generalized seizure (atonic and tonic). Both of these lasted 2-3 minutes each. There is just so much to remember and learn about Epilepsy and trying to remember each classification is difficult. I had prayed I wouldn’t have to become an expert in this area, but when you have a child with many special medical needs, you realize how quickly your brain can learn new things.  According to my research, there are over 40 types of seizures. Some seizures can be a person fumbling or lip-smacking, acting as if they are drunk, stumbling around.

So, he went almost an entire year without a seizure. I was remarking to his mother how lucky he was to have medication that helps control them and then they happened. So in about five hours, we will be making a trip to our local children’s hospital for labs to be drawn so we can make sure his medication level in his system is where it needs to be. And if it is, and he still continues to have the seizure activity, we will have to meet with his medical team and determine if he needs another medication added to his already large group of meds daily, or if he needs to switch to something more effective. And there is no guarantee that will help or not.

He knows he takes medication for seizures, but he doesn’t really know what seizures are or what they might look like. When he’s ready, then we will show him videos but until then, we continue to pray that he will be lucky enough to outgrow them one day OR that they will find a cure.

He is resilient though. He still loves life. He doesn’t let anything get him down and if he can be positive with all he has to deal with and cope with, then so can I.

I know God will use everything Tyson goes through for His glory. And in reality, every struggle or trial we have in our lives, God can use for good. We may not understand why things happen the way they do and we may not always be happy about the circumstances we find ourselves in or our loved ones find themselves in, but we can be assured and know God will never leave us or abandon us. He created us. He loves us. He wants only the very best for us and with all things, His timing is always perfect.

Whatever you may be facing today, may I encourage you to turn to the One who gives you life and pray to him, asking for wisdom, discernment, and clarity to get through it all. He is always ready and waiting.

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

Blessings until next time~Carlene

 

 

 

 

 

 

 

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Reflections in My Mind

Psalm 119:169-170 New Living Translation (NLT)
169 O Lord, listen to my cry;
give me the discerning mind you promised.
170 Listen to my prayer;
rescue me as you promised.

I miss working daily.  I don’t miss rising super early while it’s still dark outside, with little traffic to speak of, but I do miss the daily conversations with co-workers and vendors/customers.  I don’t miss working on holidays or funky schedules because of the type of job it was, but being an extrovert and conversationalist, it’s difficult day in and day out to not talk to people, other than your family members you live with. Don’t get me wrong, I love my family.

I don’t miss being in such severe pain that I would cry every day as I limped to my vehicle for the 10-minute ride home.  I often wished my drive home was longer because this was the only time I had to myself throughout my day. Being a people person; never meet a stranger type gal, I still need quiet time for me.  And since retiring with a disability, the only time I get for myself is when I sleep. (I did have one day over the weekend where my husband took the two children for the day to visit other family members and it was very appreciated!)

There is always someone with me. I am very thankful to have my husband with me, as we continue to grow older and blessed that I get to spend all day with two of our grandchildren and our daughter, but there are moments when you just need your own space. And if you are a parent, then you know even going to the bathroom usually means there will be someone following you in to talk with you or “hang” out.  I never fully understood until I had children of my own, what parents meant when they said they couldn’t even hide out in the bathroom. Our children are grown, but inquisitive toddlers don’t understand their presence is not needed every time.

I used to read three to four books at a time, and now I am lucky to get through one chapter of a book in an entire day!  I miss reading like that.  Just immersing myself in a story, envisioning the characters and the scenes, gripping the book in my hands with a feeling of ‘I know I should go to bed but I can’t put it down just yet’ or ‘I’ve got to see how this ends’ mentality. Now I just pray to make it through one chapter and hope that by the time I can pick the book up again, I won’t forget what I read and have to start it over.  It’s so frustrating how my brain has changed since I retired due to my fibromyalgia and other health conditions.

I look back at where I was in 2016, leaving a job of 16 years, with no plans except trusting God for everything, to where I am now and a whole lot has happened in the short amount of time, but Jesus has carried me through every single situation. He has been my strength, my provider in more ways than one, and continues to be available for me every single second of every day.

art artistic black and white blank

Photo by Lynnelle Richardson on Pexels.com

*I was approved for my Social Security Disability within a few months of applying, for the first time on my own. No denial or a need to get an attorney to help me fight, which is all I heard from people when I said I was going to apply.

*Available to help our daughter with her son, after he was diagnosed with Autism Spectrum Disorder as he needed substantial support and constant supervision. Read everything I could get my hands on to learn about ASD and did my own type of “homeschool” to help him(this would not have been possible if I had been working full time).

*I wrote and self-published a book about the Jesus and His mercy and grace.

*Met others that live with the same type of health conditions I have so we can offer one another support and encouragement.

*My faith increased as I saw God’s hand in my life and the lives of those I love.

*Drew closer to the Lord through trials and tribulations of going from having an income to no income to a fixed income and thankful for pantries and organizations that help when you need it.

I’ve been blessed to witness so much in our grandson Tyson since his diagnosis in 2016. He was nonverbal. Now he is speaking. He made no eye contact or engaged with others, now he is doing better. He lived in his own world, and now he lets us in.  Every victory, big or small, is celebrated. And when I look back at to where he was at 26 months to now, I am so thankful God has placed the right therapists, doctors and medical support staff in our path.

I’ve sat with my husband at doctor appointments for myself and him, as we navigate the many health issues we have and I am thankful I was able to do that for him and not wonder what is going on, as his memory isn’t what it used to be.

I have seen our older grandchildren blossom into thinkers and doers. Always being kind and helpful to others. Moments that I would have missed had I not retired. But early retirement comes with a price. When it’s not planned and you have no life savings or retirement funds to look forward to, there is always the concern that what will happen if there is an emergency or a crisis.  Even in those moments, the Lord has seen us through.

I miss having a steady income stream. Or should I say I miss my hourly rate of pay? If I were to figure out my monthly disability income as an hourly wage, I would be making a lot less than the federal minimum wage.  And that 2% cost of living increase the federal government was so kind as to give people that receive social security doesn’t even begin to cover anything. But an increase is better than a decrease I guess. Receiving benefits once a month versus weekly or bi-weekly truly teaches the value of money and what you spend your money on.  Going to the movies, out to eat, bowling, museums, etc. that is a rarity. Trying to explain to children why they can’t have a $3 happy meal is difficult some days, but it is not the end of the world. Life goes on.

The one thing I despise is having a chronic condition and going to urgent care or emergency room because the pain you have is something out of the normal for you and if they know you have an autoimmune disorder, many tests/scans that might be done for a person without a chronic invisible illness, presenting with the same complaints and symptoms, isn’t even considered or done because of the chronic condition you have.  Why does the public or medical personnel think that every person with chronic pain related condition is seeking out drugs or medications for pain relief??? Sometime’s all you want is an answer to why you are feeling so poorly and wanting help.  You know it’s not the same kind of pain you live with day in and day out, but once they hear the F word (fibromyalgia) it’s chalked up to that and nothing is done. I know why, so you don’t need to tell me, it really was a rhetorical question.  Because there are many people that have cried wolf one too many times and makes it bad for the rest of us that truly do need help.  I don’t take any kind of pain medication that I can’t purchase over the counter from the pharmacy.  I can’t due to another health condition.

Prayer and focusing on Jesus and His Word carries me every day. I could complain all day long, but it won’t help me feel better.  It will actually suck the life out of me. Focusing on how blessed I am and how thankful and grateful I am makes me feel better, even on pain filled fatigued days.

Yesterday was a pain filled day. It didn’t start out that way, but as the day progressed, the severe muscle spasms that come when they feel like it and leave the same way, almost debilitated me yesterday.  As I was trying to reach something just out of my reach, they started in my abdomen, worked their way under my ribs on both sides and into my back and shoulders.  When these hit, there isn’t one thing that makes them better.  Lots of little things I try: stand up, bend over and hang in that position for a while, press firmly on my sides, try massage, ice packs, heating pads, a lot of breathing in and out slowly much like a woman having contractions in labor. I wish I could just walk them out similar to leg and foot cramps, but I am at the mercy of my body. And as they relaxed to a dull ache, and not a stabbing pain, I was finally able to lay down and rest. I hate when I have days like that. I’ve been dealing with these stupid spasms for over ten years. No one knows why they happen, or how to prevent them. I’m not low on magnesium or potassium, it’s not my heart, it’s just one minor inconvenience of having fibromyalgia.

I do take a supplement that helps with overall pain, but it’s not a cure-all for all my pain.  How I wish it was. But I am very thankful to have it as a tool that I use daily.

I am in the process of listening to the Lord and seeking guidance on writing another book. Not sure when it will happen, if it will happen but I feel a tugging on my heart to do it. I know God gives us the desires of our hearts and the gumption to achieve them.  I am still waiting to discern the topic for the book. My thoughts are jumbled and my spirit believes it has to do with His might and our worth in Him, but forming the words into sentences that make sense and will help others know Him more intimately, are still randomly bouncing around in my mind.

Our homelife recently changed, as our granddaughter Emmalin made her presence known. We are adjusting to having a baby in the house again and loving the fact we can see her daily, but how easy we forget the demands of a new babe and they have no sleep routine yet. They are more powerful than they realize. It’s all good.

As for reading, I am currently reading a book called The Autism Answer by Dr. Frank Lawlis. I will let you know what I think if I finish it.The Autism Answer by Dr Frank Lawlis

It’s only 122 pages long and years ago, I could have read that in a few hours. I have had it since last Friday and only have made it to page 11! So, maybe if the stars align, and Tyson is having a good day, and health problems don’t arise, maybe I will finish it before summer time.

I know this post has been all over the place, but that’s where my mind is today. My husband is having some health issues without any kind of answers and I will not say I am worried because worry gets you nowhere.  I am concerned that no answers of any kind seem to be attainable right now, but I will continue to press into the Lord and seek his guidance and wisdom.

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

Blessings ~ Carlene