Category Archives: Learning

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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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

Photo by Pixabay on Pexels.com

 

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

 

 

 

 

 

 

 

Making Memories & Learning

Philippians 4:13 New Living Translation (NLT)
13 For I can do everything through Christ, who gives me strength.

 

Earlier today I realized as Tyson was dumping toy bins and playing, that in a week, he will be home all day long. And I started to panic, thinking about the messes and then someone reminded me that I need to look at things a little differently. Don’t look at it as just a mess, but making memories.  I know that’s how I should view it. It’s extremely difficult to remember that, all the time.

Tyson and Bee

Tyson playing with his musical bee

I started getting our learning materials in order so he can continue to expand and learn on concepts he is currently learning and maintaining some type of routine and structure so that when school starts back up in the fall, it won’t be so hard to get back into the swing of things. At speech therapy for the past several weeks, he is trying to learn the concepts “in” “out” “over” “under” “next to” “open” “close”. Asking where, what, and who questions are not as easy for Ty as we would hope, but each week he makes progress. Speaking the words are hit and miss. The word ‘in’ is easy. On and off are simple enough, because they are short syllable words. Last week, he finally could say the word open.  We have been working on the word open since he was 2 1/2. Using the sign with our hands as if we were opening a book and showing him what the ‘O’ sound looks like with our mouth.  What finally did it for him shows me and his speech therapist that all of our minds process words and sounds differently.  She had an ink pen and he was saying pen very well. She made the ‘O’ sound and then said pen-pointing to the pen. He finally got it and said ‘open’.  It took something so different for just that one word, but now he understands how to say it, what it means and the sign language for opening something. It’s been a long 11/2 years for him to understand.  Beginning and ending sounds are something he struggles with.  “V” comes out like “B”.

He fixates on two objects and will watch numerous YouTube videos of these objects. You will never guess in a million years so I will spare you the guessing game. #1-Vacuums #2-Ceiling Fans. Every time we go anywhere that has vacuum cleaners or ceiling fans, he wants to stop and look at them, check out all the details and if the ceiling fans are not turned on, he wants to know why.  I am not surprised by the ceiling fans. They spin and he loves anything that spins. Being obsessed with the vacuum cleaners has developed over time. He DOES NOT like when they are turned on. The sound is too loud and painful for him. He has noise canceling headphones that he wears when we have ours turned on at home, but he loves it so much when it is off, we literally have to pry it out of his hands. He will unwrap and rewrap the power cord as many times as we let him, sometimes for hours if we allowed it. We have learned when we are finished using the vacuum, it is put up right away, otherwise, a meltdown will occur and it may take hours before he is calm enough to talk to.  In the stores, we must avoid the vacuum cleaner displays or he cries and screams.  If they are unavoidable, we have learned the battle is not worth the outcome. We stroll down the aisle and let him see them, point out the colors, features and then we say goodbye.  I never thought in all my life, I would be talking to inanimate objects, but it makes him happy and keeps him calm.

When the weather is nice and not pouring rain, like it has done for the past several days, his mommy and her fiancée take him for walks in the neighborhood. He loves taking walks and playing outside. I miss being able to do this activity with him. I do have my walker with a seat on it, but it’s difficult to hold onto his harness and the walker at the same time. Somehow we will figure it out. Being outside, playing and walking, is not only healthy for him, but it helps to reduce the hyperactivity associated with the ADHD he deals with, along with the medications he is on. I hate the fact he has to be on medications, but for him to stay focused and not out of control, right now they are needed. I am very thankful for his AED medications. He hasn’t had a seizure for almost two weeks, which is great! Dealing with Epilepsy, I am learning is being ever vigilant because he has a mixture of different types of seizures and there is no trigger that we know of, at this time, so you never know when one will happen. AED is the abbreviation for anti-epileptic drugs. I often forget not everyone knows the terms or abbreviations I use.

Today was a good day for Tyson. He was excited when his bus picked him up this morning and played most of the afternoon, watched some videos and spun around until I was dizzy just watching him.

I know that we have to keep his mind entertained as well as having just good old-fashioned playtime.  Repetition is key for him learning and recalling things. He is very visually oriented and I have found a great site to get products from that will help him to learn in a fun way.  I love TheAutismHelper page on Teachers Pay Teachers. If you have Pre-K through 6th grade and love someone on the Autism Spectrum, I highly recommend checking out what she has to offer. There are many resources that I have purchased in the past, as well as some magnificent downloads for free.

I thank Jesus every day that he entrusted Tyson to our family and I pray daily that He will guide me and give me strength when it seems like too much to handle. I know that HE is my strength. Jesus will lead me and guide me, I just need to remember to listen and follow His lead.

children most important work

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

#HopeAlwaysHaveFaith

Blessings~Carlene

 

 

 

Mr. T. in our World

Tyson Haircut

This is Tyson, Mr. T for short. He is one of our four grandchildren. Because he lives with us, I get to see the changes God is working in his life every single day and what a blessing it is!

Mr. T was so much stronger than many infants his age, he went from scooting around on the floor, to some type of what we affectionately call “leapfrogging” to standing and walking. Crawling never was involved in his learning to get from one place to another. It was a cross between a one leg crawl and a hopping motion all at the same time.

He didn’t verbalize like most children his age and our concerns were waved off, time and time again. By the time he was two, he had 3 words, maybe 4.  The rest of the time we relied on grunts and gestures, pictures and sometimes we gave up but he would persist until we understood him.

He walked at 10 months without assistance and by 12 months, he was running and jumping and climbing.  And again, the language delays were thought to be something he might be slower than others at picking up on, but simply because so many other areas of his development were ahead of the game.

For anyone that loves a person that is developmentally delayed or challenged, you can understand the frustration and irritation that grows when you know there is something different about your special person, but no one will listen. So you read everything you can get your hands on about where a child should be at each stage in their life, you beg for interventions from physicians, but you are put off more than once. We are so thankful that someone did listen, finally. At his two year checkup, with a new pediatrician in place, right away referrals were made and the process began to find out exactly what was going on. Audiological testing to check his hearing; speech testing to determine his level or non-existent levels of voice communications; cognitive testing to determine what he understood and didn’t. Evaluations to determine if he needed additional physical or occupational therapies and then the day of diagnosis arrived.

We weren’t really surprised by the diagnosis just concerned. Where do you go from here? He was diagnosed with Autism Spectrum Disorder, Level 2, requiring substantial support.  What did substantial support mean? Would this be for his entire life, would he outgrow needing support? Would he ever have the ability to speak and communicate?  So many questions. And a million answers, because everyone that has Autism, may have an autism diagnosis, but there is a saying in the Autism community, “If you have met one person with autism, you have met one person with Autism.” Autism Spectrum Disorder affects each individual differently and a treatment or therapy that works well for one person may have no effect on another person.

Fast forward….17 months later and he now has a vocabulary of over 100+ words. I have lost count. Does he use them in sentences or phrases? Not in ones that the world of literature would understand, but he does share with us his needs and wants.  For example, if he wants a bowl of cereal to eat-his request sounds like this “bowl-cereal-milk”.  Short and fast words. If he knows we are going to the store, he may say “maw-car-shop” and his new favorite saying when he wants his favorite candy (M&M’s). “Me-M’s”.

There are times I don’t understand the words he is trying to vocalize and when all else fails, we grab his PECS (Picture Exchange communication system) (also known as visual support pictures) and he goes through the book to convey his needs. We thank God daily that his brain has unlocked his voice and he can use words to communicate with us. We thank the Speech Therapists and Early Intervention Specialists that saw promise and hope in him and never gave up. He has been in Speech Therapy for over a year and a half and (his official diagnosis is Expressive/Receptive Language Disorder)  will continue until such time he no longer requires it.

Living with someone on the spectrum isn’t always easy, but when you love someone, you will do whatever is necessary to help them live the fullest life possible.

He also has a condition known as Sensory Processing Disorder. He is known as a Sensory Seeker that requires a lot of sensory input, he can only get by jumping, spinning, bouncing, playing hard, running fast and stopping, banging his head repeatedly and he does not comprehend the word danger or safe or stop or no when it comes to danger. He is a flight risk. An elopement risk. He is fast. He reminds me of the cartoon character “the Roadrunner” and sometime’s the “Tasmanian devil” all rolled into one. He doesn’t like the floor area to be clean for any length of time, the more mess, and chaos, the better.

But he is also known as a Sensory Avoider when it comes to loud noises, bright lights and the way some clothing or objects feel (tactile). He loves the water. Not drinking it, unless it’s in my cup and then that is a totally different story, but again, he has no sense of danger. The water could be 1 ” deep or 6 ‘ deep and it wouldn’t matter to him, it’s water and he loves playing in it. There have been a few times in the last several months, as the leaves fell from the trees and exposed the creek that runs behind our home that he would find it, on the many days he has escaped from our home. And we are very proactive and have extra locks, up high, presumably so he couldn’t reach them or open the doors to the outside on his own. However, he reminds me of an engineer. He will work at something, until he figures out how it works, to his advantage. Child safety gates used to be enough to keep him contained, but no matter how difficult they may be for an adult to open, he has figured out the mechanisms enough to open them on his own. The same with the door locking mechanisms.  He is very smart.

Going on outings with him require strategic planning. Holding his hand is simply not enough because he has great strength and fortitude and can easily wriggle out of your hold and be gone in a flash.  So now, he wears an Alert Me Band that will alert anyone if he is found running loose on his own that he has Autism and he is a runner and there are phone numbers embedded on the bracelet so we can have contact with them to return him to safety.  That’s just one precaution that is taken. We do not go on many “spur of the moment” trips or spontaneous outings, because one person may not be enough to handle him.  Going to friends’ homes isn’t something we take lightly because telling him not to touch fragile objects or climb isn’t something that he “gets”.

I share all this with you because if you know anyone on the Autism Spectrum when they are well behaved, it takes great strength for them to “hold it all together” to fit into what society accepts as normal behaviors. Most people on the spectrum require a certain level of routines and structure to function without having meltdowns and meltdowns are totally different from tantrums. To view them, they may appear the same. But tantrums are when a child does not get what they want. A meltdown is a reaction to something happening in their brain they have no control over and can’t just “stop it” or “dry it up” and move on. I think that was the hardest concept for us to learn and differentiate between the two.

So, Mr. T. has overcome a lot of delays, but he still has a way to go to be equal to his peers and he may never be equal in the eyes of the world, but he is no less because he is different. His brain is wired differently. He sees things differently and understands them differently. And he is much like any other three year old in many ways. He will push your buttons and see what he can get away with, but doesn’t always understand what he can’t get away with or why it is wrong or dangerous or bad. He knows what hot means, but isn’t afraid to touch something hot, even if he would risk burning himself. The concept of hot is lost and may never be understood. No one knows. Only God knows.

Now, I know this is a lot of information to throw out there, but he is so much a part of our daily life, that I can’t imagine not sharing his story. If his story can help others that are going through what we face every day and it helps to let you know that you are not alone when you get the diagnosis or when someone mentions something that seems foreign to you, don’t fret. It can be overwhelming. But you don’t have to walk alone. There are many support groups and organizations that are available to help you and your special person get the assistance and help they need.

Don’t be afraid to ask questions, as many times as you need to. Even if you feel like you already asked the question. And remember, you know your person better than anyone else. You see them every day. You know what you’ve tried and what works and what doesn’t. The reason it is so difficult, in my opinion for medical professionals to help is the spectrum is just that, a variety of problems that encompass more than the mind can comprehend. Some people grieve when they hear the diagnosis, other’s rejoice because they finally have answers. There is no right or wrong way to feel, just remember that the person that you loved before the diagnosis, is the same person you will continue to love after it.

I will share more about Mr. T and his journey through this maze called life because his story has just begun. He was recently diagnosed with Epilepsy and that has created a whole new area of learning and reacting and caring.

But for today I will say this one last thing. God created all of us. We are all wonderfully and fearfully made. In His image.

Psalm 139:14   New International Version (NIV)
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

Mr. T. and I look forward to sharing his journey of living with Autism. Different not less.

May you know how much Jesus Loves you~right where you are.

Blessings to each and every one of you~Carlene

 

Subtle Differences

In the past few days, I have been pushed around, challenged to hold true to my faith and always remember that there is a reason for everything and God is in control.  I haven’t been pushed around by bullies but by this mysterious disorder known to many as Autism Spectrum Disorder and Sensory Processing Disorder.

For the last year and 4 months, autism has lived in our home, officially.  And while, we have learned many things, and learned how to cope and work with this mystery, I am learning that it truly is a lifelong learning process, not just for our grandson who has autism, but for those of us that love this little guy and want so much for his life to be as normal as possible.

We can’t go to the park or even in the backyard unless there is a minimum of three adults with him. Why? Because he is a runner. He loves to run, and he doesn’t care if he is running down into a creek bed of freezing cold water or into the street with traffic. When he starts running, no amount of hollering at him to stop, or calling his name works.  Which means you have to run just as fast as he does or faster in hopes you can catch him before he enters the danger zone. This was the case yesterday morning when he figured out how to get out the front door, off the porch and ran into the backyard in his pajamas of shorts/shirt and socks in 20-degree weather. He was on a mission to get to his swing set.  He is a sensory seeker, which is part of his sensory processing disorder, he is looking for things that will fill the need of whatever stimulation he is missing and he will climb on anything, regardless if it is meant for climbing or safe to be doing so. EVERY DAY is a battle. And if he doesn’t have something solid to climb upon, he will use a toy or toys stacked up and attempt to do the climbing.

He figures ways to climb over the safety gates that are installed to keep him safe, on end tables and desktops if he sees something he wants or wants to investigate. And then he will jump off of them, regardless of how high up it is or what may be in his jump zone that could be dangerous or harmful to him.

Tyson Cliimbing

He doesn’t like loud noises and as much as he does well at his preschool in a small group of people, he doesn’t like a lot of people in one space. There are times he will run and hide in a wooden cabinet or under a table or cover himself with a blanket, so he is safe and hidden from the world. As he becomes stronger with each passing day, it is difficult to keep him reigned in one area. At age 3, he weighs 38 pounds and is over 3 feet tall.  Putting things up out of his reach is not as easy as they were a year ago. He has always had great strength since birth. Never needed help holding his head up, although we did.

He slides down the wooden stairs on his belly, feet first, and laughs and giggles when he gets to the bottom, running up to do it all over again. I hold my breath a lot. I am so afraid he will seriously hurt himself, but I’ve come to realize that the vestibular input and proprioceptive input he gets from doing a thing like this, he can’t get any other way. Or no way that he likes so far. His mini trampoline, use to provide enough input, he didn’t need more aggressive forms, but now the trampoline just isn’t enough. He can be very aggressive at times, and its hard to try to explain to him that he can’t headbutt others or constantly bang his head on the floor or the wall.  I know I am not the only person that has lived with a child like this, there are many of us that live in silence, because people who don’t experience it on a daily basis, can’t begin to imagine what it is truly like. And then there are sweet calm moments, like right now, where he climbs on my lap, gives me a hug, lays his head on my shoulder, just for a moment to take a break from his high-strung activities and lets me know he loves me and for a moment all is peaceful. But it usually doesn’t last very long.

Each one of us is a work in progress, from the day we are born.  Life experiences shape who we become and why we act the way we do. For most children, language develops at 6 months.  It may just be babbling, but it is a form of language. Speaking and language development is crucial to know if your child has a problem or a developmental delay in communication. By 18 months, he still wasn’t saying anything except ma and da.  Not even mama or Dada, And every time we saw the pediatrician, we were assured that he had done so many other things, early (sitting, crawling, walking) that he was just gonna be slower with talking because he was busy. Repeated attempts to have him tested fell on deaf ears. Well-meaning friends and family offered advice.  Here’s my two cents on this matter: If you think your child has any type of developmental delay, press for the physician to make the referral for testing, to determine what the problem is. You know your child, You spend the most time with them.  I am glad we finally found a doctor that was willing to listen to our concerns and give us the referral we needed.

When he was diagnosed at 26 months, he had just those two words and very little eye contact with anyone. Thanks to early intervention services, speech therapist, developmental specialists, and lots of work at home with him, he was able to start preschool this year, four days a week for a few hours a day. He started with 40 words, well under what a normal two-year-old would have and some of the 40 words were his “made up” words for objects he knew about.  Now after being in preschool for over 2 1/2 months his vocabulary is growing and he is just starting to put two or more words together to form two-word phrases. Since being in therapy, we have learned that his language delays are both expressive and receptive language delays. So his understanding is limited right now, but he is learning and he is thriving.

We are very fortunate that while most children on the spectrum have struggled with sleep, he is not one of them. There is always something to be thankful for. Always.

And when I want to sit and cry because life isn’t fair, and these were the cards we were dealt, I could be angry with God and I could wonder why him? But I am reminded of a story in the Bible, that puts it into perspective the best.

John 9:1-5New Living Translation (NLT)

Jesus Heals a Man Born Blind
9 As Jesus was walking along, he saw a man who had been blind from birth. 2 “Rabbi,” his disciples asked him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”

3 “It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him. 4 We must quickly carry out the tasks assigned us by the one who sent us.[a] The night is coming, and then no one can work. 5 But while I am here in the world, I am the light of the world.”

I don’t know why our grandson has Autism, but I do know that God will work it all out. I know that I have learned many things about this Spectrum Disorder and while he is learning his way and knowledgeable about many things he can’t share with us yet, I see it every day.  He is very smart for a three-year-old. He loves to fiddle with things and take them apart to see how they work, he might be an engineer someday or maybe even a teacher. He is learning what numbers are and what they mean, learning about colors and shapes and loving every minute of it. He is slowly starting to interact with others, and I am thankful for that. At home, his interactions are that of a typical child, in public, it’s a slow process, but a process just the same. He uses a combination of spoken words, pictures, and sign language to request what he wants. Most of the time, we understand, the frustrating times comes when there is no picture and he tries and tries and still we don’t understand. As much as it is frustrating for us, I can only begin to imagine how frustrating it is for him.

His memory is excellent. If he has experienced it, he can share in one-word utterances the details. We have been talking to him lately about getting his hair cut.  It’s way too long for our liking, but he is very sensitive to anyone touching his head or messing with it in any way. But he remembers his first haircut. We took him to a local salon. (Me, his grandfather and mother whom he refers to as maw, da, and meem) And we rode in da’s car and boo boon (and papaw drove and after the haircut, they gave him a blue balloon).

But it was not a fun experience. It took two of us to hold him, while the stylist, tried using scissors to trim his hair nice and neat and we ended up getting a buzz cut because that was the fastest (and probably the most painful for him, i.e. loud, vibrating noise).

As I finish this out for today, he is pacing around the living room, with his shoes on and his backpack, he’s waiting for the bus. It will be a long wait, the bus will not be here until tomorrow morning. But telling him that school is closed, telling him there is no bus coming to pick him up, hasn’t worked. So, until he tires of wearing his backpack, he will continue to walk back and forth with the backpack on. Sometime’s he gets “stuck” and because it isn’t harming him to do this, we allow it. It makes him happy.

Isn’t’ that what we all want for our children/grandchildren to live happy, carefree lives. He was sad that we didn’t go to church today. But it is too much on me to try to contain him in the parking lot, while holding his hand, walking with a cane and carrying a purse and diaper bag, so we missed out today. We played together, read the first few pages of a toddler book and he climbed and I held my breath.

And tomorrow, I will do it all over again until he goes into another phase, that no one knows what it will be or what it will look like. And Jesus will get me through it all. He always does.

May you know how much Jesus loves you~he will meet you right where you are.

Blessings to you~Carlene

 

 

Early Intervention is Key

Early intervention is so important when you think that your child or a child whom you love has developmental delays. Push for the doctors to listen to you and if your child’s doctor doesn’t listen, find another doctor.

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Every parent, whether by birth or adoption, want only the best for their child. They want to see them live to their fullest potential, fit in with the world around them and succeed in every way. When you notice that developmental milestones aren’t being reached, it may just be that they are taking their time. I am not saying to push the panic button. However, if you have a concern, express it, explain it and wait for the answer. If their physician sees no concern, ask them to explain it again.

I have become an advocate for this cause because I live with it every single day. Our grandson, Tyson has Autism Spectrum Disorder, @level 2 requiring substantial support. That is the official diagnosis. He is three now. When he was just a little over 2 years old, we finally found a doctor that was willing to refer him to our local Children’s Hospital Developmental Pediatrics Clinic for further evaluations.

The signs started when he was about 6 months old. He didn’t ever really crawl on all fours, it was more of a “leap-frog” type of crawl. From birth, he had the strength of an ox to hold his head up and when you tried to lay him down to change him, he would twist and turn and place his body in such awkward positions, we didn’t know what to think. Diaper changes were traumatizing for him. The only way to get him to remain partially calm was to sing Amazing Grace to him to settle him while he was being changed.

When he was able to sit up on his own, he would and still does, bang his head and rock back and forth. Immediately we were concerned that maybe he had autism. He wasn’t cooing or saying mama or dada and when he tried to communicate, he would scream inaudible noises. Each and every time we brought our concerns up to his pediatrician, who had been one for over 30 years, we were always met with comments, such as “he has done so many other things early, he will talk when he is ready”. So we decided to trust her judgment. We didn’t know that maybe just maybe she wasn’t the right one to make the decision for us.

At his 18-month check-up, he was very active, wouldn’t sit still for any reason and loved climbing and jumping off chairs, stools, exam tables, but he didn’t like being examined, and his strength would reappear, he would twist and turn and this was chalked up to his age and something that was not a normal day thing.  He had mastered walking on his own at 10 months, but still wasn’t showing any signs of talking.  Trying to figure out what he needed or why he would cry became a guessing game. It was so frustrating for all of us, but mostly for him.  Again, I asked, are you sure it isn’t autism and again I was told he did not exhibit any signs of autism. He was a boy and some boys develop slower in communication than girls and she was concerned. Again, we trusted our pediatrician.

We watched videos of the ABC song, we tried to show him pictures of animals and mouth the words to him when speaking, hoping anything would break through in his mind. The main concern at that point was how will he communicate what he is feeling, needing, wanting if he can’t talk to tell us.

We were very lucky that due to his mother being a single parent, she had signed up for Early Intervention Services when he had been born, in the event he would need them down the road. In the State of Ohio, Early Intervention services are from birth to three years old.

We had Help Me Grow Brighter Futures make home visits from 1 yr to 3 years old. This program focused not only on the child but also helping our daughter be the best parent she could be. They were able to get more services for Tyson and our daughter than we would have on our own. An ISFP (individualized services family plan) was initiated with goals and timelines to meet those goals for both our daughter and Tyson. If goals had not been met by the deadlines, we took a look at the goals, revised what needed and kept going.

HMGBF also helped us get connected with another early intervention provider, PACE (Parent and Child Enrichment Program) through our County Developmental Disabilities Offices. After evaluations with PACE, he started working with a speech therapist in the home, as well as a developmental specialist to find out exactly what he could do on his own and what he needed help with. These specialists were able to form a bond with him, as well as teaching all of us how to work with him at home, for continuity of care. They also helped us have him evaluated for Sensory Processing Disorder by an Occupational Therapist and it has been confirmed he is a Sensory Seeker and Avoider, depending on what we are talking about.

We must be ever vigilant and he can never be left alone. As with any three-year-old, he is very inquisitive and examines almost everything he can get his little fingers on, but he also throws objects as a way to get input his brain is not getting on its own. If you wish to read more about Sensory Processing Disorder, please click the link. He is considered an elopement risk or flight risk child. He doesn’t perceive dangerous situations as dangerous. He doesn’t understand that the street is not a place to play or if something is hot, he cannot touch it. And the most important thing is we can say, “No, stop” and he doesn’t have what his brain needs to process this information at the moment.

Autism Spectrum Disorder is a neurological condition and everyone on the Spectrum has their own challenges. The saying for people diagnosis with ASD is, “If you have met one person with autism, you have met one person with autism.” No two people on the spectrum are alike. What one treatment or therapy works for one person, may not work at all for the other.

From experience, living with and witnessing Tyson daily, Early Intervention Services are very important because a child’s brain is most impressionable and develops by age 3 if services are not started til later, they will progress, but it may be slower.

I am not a medical professional in any way, just a grandmother that has become an advocate for this beautiful little boy who wants so much to communicate with the world around him. If you would like to follow Tyson on his journey, please visit Missing Pieces-Living with Autism.

He has made progress since his diagnosis, so much so, that he will be starting Special Education Preschool services this fall in an integrated classroom. I can’t wait to see how he soars!

For more information on Autism Spectrum Disorder, please visit Autism Speaks.

May you know how much Jesus Loves You!#HopeAlways#HaveFaith

Blessings to all!

Reblogging -Come and See

 A great read about Jesus was written by a fellow writer. I encourage you to read and follow the link at the end of his story.

Blessings!

There was a man who walked on this Earth about two-thousand years ago named Jesus. In fact, every time you write the date on a check you attest to the reality of his existence. There are some today who say he was a great teacher. Others say he was a prophet. But Jesus claimed to […]

via Come and see! — excatholic4christ