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.
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