So I am sitting here preparing to be a guest speaker on a podcast show called Resilient Us next week, and a few of the key notes discussed got me thinking. For instance, promoting my book, The American Terrorist, is hard because I have never done it before. The next one, though, should be much easier. Same aspect with Carter, experiencing your child going through a Pediatric Brain Tumor is not only emotionally challenging, but going through physical aspects of it are hard as well, because we have no idea what is to come. There are a few things that we just didn’t expect when driving Carter home from the hospital all those years ago.
The biggest challenge, is future medical care. The financial aspect is simple for us, since one of the good things about being an Active Duty Marine is medical insurance. As long as I can still deploy and do what they need, medical care is pretty good. What really gets under our skin, is the constant moving around and changing Primary Care Managers. With each new doc, comes telling the story and explaining Carter in a nutshell all over again. If Carter has a headache, they think it’s the shunt. Carter throws up, they think it’s a tumor. Carter can’t see, they think it’s brain pressure.
Likely, it’s because Carter had an actual headache, because he has bad eye sight like his dad, and throws up from the pain. Now don’t get me wrong, we always want to make sure he is good to go, and not suffering from something serious, but after you have a cat scan and everything looks normal, then the MRI or follow on scan to check again is uncalled for. Every single ailment Carter gets that all normal kids experience, results in Carter getting needles, IV’s and scans done. That is not something they tell you about when first leaving the hospital.
Another aspect we wish was talked about more, is what the road to recovery looked like. Did we expect a long road of occupational and physical therapy, yes. Did we think after 8 years we still would have to figure that part out, no. It has been a long 8 years, but even though speech therapy was just graduated last week, we still have Physical and Occupational to continue on when we move to Tennessee. Thankful for us is our insurance, but for others, they should know that the road to recovery isn’t a quick relearn phase, it’s an all out born again catch up race.
Lastly, we wish someone had come right out and told us that some things, may just never get back to being perfect. For Carter, his balance has never fully regained back to normal. Has it got better, absolutely. Will it be perfect, likely not. When he is playing a running through the house, he still tends to lean in one direction and drift. He trips, falls, and is clumsy. He is still Carter though, and even though his balance isn’t perfect, he still has all the fun in the world. He cannot ride a bike without training wheels yet, and this is probably due to the balance issue. He can still ride it though, so as long as there is a big ole smile on his face, who cares?
Got something to add, comment below and let people know what you have to say!!!!
No surprise to anyone here, we are packing! (If it is a surprise, click here)
Today we decided to go through Carter’s room and begin to pack up his toys and other random things, as we are getting closer to our move out date daily. We let both kids keep out at least ten toys a piece to get them through the next few weeks, but that is besides the point. They like playing games and reading, so the toys won’t hurt them at all. However, let’s discuss some things we found in Carter’s room.
When we think about younger Carter, like pre-brain tumor, he was organized and methodical. He liked to line things up, store them by colors and sizes, little things like that.
What we found was total chaos. Pieces from games and sets spread all over the room. Little piles of scraps everywhere, just hanging out begging to be put back with their sets. We were not expecting this before we started, but we learned pretty fast that this was going to take all day.
We packed his plastic toy box with larger toys, and put it in the garage. He has had that same box since he was a little child, and I have learned that I need to put some tape on it to prevent the lid from falling off. This time was a little different though.
Carter did not like the tape on his toy box! There wasn’t a meltdown, or any crazy fits, he just wasn’t sure about the whole thing. He stood there for quite a while looking at the tape on the box. For several minutes actually. He also looked at me and said “hey dad, my finger is stuck in the tape.” LOL! That was his way of trying to get me to remove the tape since it was a danger to him. How dare I put tape on his toy box. He never, ever, gets in that toy box for any toy. If there are toys in that box, they should be known as the “lost toys.” We know not to get rid of them though, as months later he will randomly think of a toy and say “hey, where is my…?” We learned this lesson once with a Handy Manny set, never again.
Carter would make a great inspector. At the end, he ensured he did a walk through to ensure nothing got left behind. Every toy needed to be in a box, since they needed to enjoy Tennessee too. He looked under the bed, in the closet, under the dresser, everywhere. He was to ensure he was content with our work.
Carter also found some toys that he hadn’t seen in forever, and he was so excited to see them. It was like a long lost friend that he hadn’t seen in years. He loved seeing all of his Toy Story toys all together, especially since we watched Toy Story 4 recently. He also was super pumped that he had all of his potato head pieces as well. That was a smile that never went away.
Before I go, there is one more important thing. He was so good, and behaved so well during the entire duration. Something that would normally make him a nervous train wreck, he handled the entire packing process perfectly. He didn’t want to stay in the room and help, and I won’t blame him for that. I think he just didn’t want to think about it, and practiced the out of sight out of mind approach. However, not once did he get angry, mad, or sad. He was a happy boy all day.
Want to get our articles about our journey with tumors and autism in your email, subscribe below, you won’t be disappointed.
Wow, it has been super busy here in the Sabins’s household. Between orders, graduations, school, and so much more, we feel as though there hasn’t been enough hours in the day to accomplish simple day to day task. Before getting into that though, I want to hit on something real quick. Looking back through the site, I have noticed a trend that I do not like at this time. I feel as though I have tried too hard to make this an organization and trying to grow it as such, instead of a family blog trying to share our story. That is going to change, and we are going to share our stories instead of sounding line a non-profit.
For those that do not know, we have orders! We are moving one last time with the military to Johnson City TN, where I will hopefully retire and we can settle as a family. It couldn’t be a more convenient move, and we are super excited about the whole ordeal. We are set to leave here October 1st, but the amount of work that leads to that point is impressive.
We have started packing our house, and are in the process of finding a place to live. We have always lived on Base Housing, so getting into the renting world is a new experience. Coming up with the first month rent, security deposit, and pet deposit will make any person a train wreck, but we will figure it out like we always do.
Carter has graduated speech therapy after 8 years. What an amazing feeling! All his hard work, all his effort, in all reality everyone’s effort, has paid off and he officially has eliminated one of his therapies.
I have officially announced the release of my first book, The American Terrorist. Set to release October 7th, I am so excited to start my first published piece to be a military fiction. Check it out here. Pre-sales are available now for the eBook, and the paper back will be available on October 7th.
-Kinley had a birthday, she is 8!
-Kelli relaunched her shop, Tickle Me Creations and has an entire new look. She is living life and loving her small home business!
-Carter has a few weeks left of ABA, and does not look forward to leaving Mr. B.
-Did I mention we are moving to Tennessee!!!!!!
-Carter loves Super Nintendo, who would have thought. Kirby anyone??
Wednesday was Purple Heart day, so we sat down with recipient, Gunnery Sgt. Jeffery A. Sabins, to hear his story, and shed some light on the meaning of the Purple Heart and how it’s shaped him as a Marine.
An interesting concept in our household is how Carter does this switch we call the Autism Mad to Glad. He will go from being out of this world upset, packing bags, moving to Alaska because “you won’t let me throw my TV” kind of mad, to “hey guys, I love you. Thanks for not letting me break my TV” kind of glad. Is it Carter being super smart and knows that if he starts acting really nice his family will understand, or is this an aspect from the autism?
Let’s talk about an example. Carter loves Minecraft, and loves the creativity behind the concept of the game. The other day, he got really frustrated at the game because he knew how something should be in real life, but the game didn’t correlate. This began the spiraled derailment of “Glad” Carter. Long story short (want the full story, click here) Carter was not able to play Minecraft for a few days so he could think about throwing things and screaming and kicking towards people and why those actions cannot be tolerated.
Three days later, and the new Minecraft update comes out. Toy Story is part of the upload, and even has Forky as one of the characters. This leads to Carter being so happy, you can’t even blame the kid. He becomes lovable, picking up toys, helping out, kissing dad and mom on the cheek, you know the drill. So from the outside looking in, this is any kid. I want something, so let me act in a way to get it. Forget kid, this is any human on the planet who wants something.
Now let’s look at another scenario. This happens all the time for Carter within minutes instead of days. Kelli and I talk about it all the time. If Carter is being really bad and having a meltdown, if we can safely get him in his room without him getting hurt or breaking anything, he will forget about it in a few minutes. Like clockwork, he is screaming in his room.
Then it stops.
Then there is no movement for three minutes.
Then we hear humming.
Then he walks out humming, singing, and dancing like nothing has happened. He says “hi mom, hi dad, what ya doing?” All in about 7 minutes.
This of course gets us thinking. Is this a normal kid thing, but Kinley doesn’t do this. She holds a grudge against for the entire day. Is it a brain tumor thing, affecting memory. He can remember things with so much detail that it’s scary. The kid taught himself Spanish in weeks from an iPad video. Is it autism?
Then I came across this article while dealing research on the topic.
“Researchers including neurologist Nancy Minshew, MD, studied 76 children from ages 8 to 16. Half were verbal individuals with autism, half were normal controls matched for age, IQ and gender. The diagnosis of autism reflected social and communication impairments of the autistic type along with restricted interests and patterns of behavior.
First, the children with autism, compared to the matched controls, had poorer memory for complex information (many individual elements or one complicated element) in both word and picture form. In essence, the children with autism found it hard to remember information if they needed a cognitive organizing strategy to aid recall or if they had to detect such an organizing element in the information itself.
The authors speculate that, “People with autism don’t have the automatic cross talk between brain systems — the reasoning and the memory systems — that tells their brain what is most important to notice or how to organize it thematically.”
Second, children with autism also had poor working memory for spatial information, or remembering over time where something was located once it was out of sight. Although working memory for verbal information was fine, a “Finger Windows” subtest of recall of a spatial sequence easily distinguished between children with and without autism. Spatial working memory depends on a specific region of the frontal cortex that is known to be dysfunctional in autism.”
Children with autism focus on the details. That’s the world they live in. Does this make it harder, or easier for the child. Carter has a heart of gold, has the best intentions in everything he does, is super intelligent, and loves his family. I think you know where we are with the question. We wouldn’t trade anything about Carter for the world.
So a question that some of you have asked, is What a Bad Day Looks Like! To be completely honest, they don’t happen too often now, but they do. Today was one of those days. Wasn’t the end of all days, but it wasn’t a walk in the park either.
Surprise, surprise…. it all started with an iPad. Carter’s ABA therapist was here for his usual 9-1 session which consists of playing with quick work intermixed throughout the session. One of the main factors that Carter is working through with ABA is transitioning. Going from one thing to another, without having meltdowns from the transition, and understanding why transition can be important in life.
Well, it was time to do one of those transitions from iPad to do some quick work, and Carter was asked to pause his iPad and transition to the quick work for five minutes. It had just happened to be the start of a new video when Carter was asked to pause it. Then the start of What a Bad Day Looks Like begins.
This initiated the frustration and the meltdown. When you hear the word meltdown, it cannot be described with words. There is screaming, kicking, throwing, head banging, straight destruction. You feel bad for the kid because you can just see the emotional outburst that he doesn’t know how to control. He cannot hold in the anger that he feels and it comes out in the form of a bomb. Things get broken, and if your lucky you can quickly get a hold of him and give him that sensory deep pressure bear hug that helps them calm down and know somewhere is there to protect them.
Sensory overload occurs when one or more of the body’s senses experiences over-stimulation from the environment. There are many environmental elements that affect an individual. Examples of these elements are urbanization, crowding, noise, mass media, technology, and the explosive growth of information.
Once Carter is calmed down, he acts as though nothing has happened. He goes back to playing legos and doesn’t understand the turmoil he has caused. He actually fell and got a small carpet burn on his knee today, and blamed his ABA therapist. All of the screaming and throwing and kicking himself around, and he blames the therapist for a carpet burn that Carter did to himself.
You also can tell through the rest of the day that there is something off with him. Like he keeps thinking about what happened, but then forgets about it. He has a couple outbursts throughout the day, but that likely has something to do with him knowing he cannot get his iPad for a few days after one of those meltdowns.
However, we had a command function tonight for dinner, and he was fantastic. Years ago, a meltdown would cause the entire family to be in shambles. We had no idea what to do, how to react, or even if it was safe to go out. That is no longer the case though, as after the meltdown and everything calmed down, we carried on through life as normal.
Meltdowns are not the end of the world, they are just what they are called. Meltdowns are meltdowns, and they are nothing more. Just because Carter is currently having a hard time adjusting to transitions, doesn’t mean that he has no life to live. The boy remains happy, he forgot about his anger, and we are helping him work through this stage in his life.
Want to know what is important to understand. In this current stage in our life, for every bad day we have, there are 20 good ones that we wouldn’t trade for the world.
So let’s talk about an interesting aspect of Carter’s life. We briefly hit some points about it in another article talking about technology However, as we sit here and watch Carter play his iPad as we speak, it is apparent that the realm of the iPad world is in a class all on its own. Let’s talk about a boy and his iPad.
It’s hard to remember exactly when Carter first started playing his iPad, but it was at a very young age. It obviously started through the gateway drug called an iPhone. After his surgery, likely while he was still in the hospital, he started playing the games that came on the cell phones. At first we just wanted him to be entertained, and always told ourselves that he will be growing up in a world of tech. He needed to learn how to use technology to survive in corporate America.
Then it became a way to keep him entertained while do other things. For instance, going out to eat, going to appointments, fairs, etc.. All he wanted to do was play a game on Mom’s or Dad’s phone, and we simply just allowed him too. Until the meltdowns began to occur!
The phone would die, he would lose at his favorite game, or the internet would go out. He would scream and shout, thrown and destroy, just plain get mad. It was a side we hadn’t experienced yet, and it was scary. Within seconds he would go from completely happy, to the terminator. So we tried a different approach.
He got an ipad! I know, it sounds crazy right off the bat, but hear us out. We wanted Carter and Kinley to have their own iPads that had their own individual apps. Things that they liked personally. This worked for a little while, but it still got to the point that the only thing they wanted to do was play games. We would even drive 9 hours to go to Tennessee and visit family for a week, and they still just wanted to sit around and play games on their iPads.
For me personally, I hate that more than anything. Phones have consumed peoples life, and when you only see each other a few times out of the year, lets have a conversation and not sit around playing games on phones. So, having your children do it to other people is just as bad. I wanted the kids to enjoy being with their grandparents, but instead they wanted to play on phones and iPads.
Not to mention, the meltdowns didn’t stop either. The same concerns from before were still occurring. So we decided to make another change. We took all of the games off, and put on educational stuff. This seemed like the perfect idea, and worked out pretty good for a little while. They would play ABC mouse or something to that extent, and they would get bored and do something else. That was until one of the educational games led them to youtube kids. This was the everlasting demon we did not see coming.
Youtube can often lead down dark paths, and end up changing your child’s personality and the way they act. Carter started saying phrases and acting out things we had never seen before. It was disturbing, and there were times you had no idea what he was watching as he would click through videos so fast.
Carter spends 80% of his day scripting out things that he has seen or watch on movies, television shows, or online videos. He is great at it, and has the memory of a lock box. He even says he wants to be a movie producer when he grows up. Reenacting The Incredibles or The Magic School Bus is one thing, but when you start to play out the Home Alone movies and Daddy Day Care, there are some things that are questionable with your ten year old. What if he saw something dangerous on accident.
A change needed to happen!
On top of all this, Carter was also getting headaches, and we assumed this was a big part of it. Watching that screen so often and so close had to affect his eyes somehow.
So we started restricted both kids to 1 hour a day, with only authorized games and videos by us, the parents. This was super hard at first, and Carter hated the transition from playing to not playing. However, through ABA and constant discussions and working through it, Carter is a whole new kid when it comes to his tech. No screaming, gives the iPad up, even plugs it in after he is done.
He still has his phobias though. If the iPad falls between 50%, he is in immediate freak out mode. He needs to plug it in while playing, and all he can think about is it dying. You can’t tell him no, because he won’t enjoy his only hour, and I don’t think that’s fair to him. I don’t go through his sensory overloads, so who am I to pretend to understand his feelings.
When we travel to TN, we don’t even take the iPads anymore. They swim, hang out, go to Dollywood, it so much fun. This last trip we took the Nintendo Switch, and when they got super bored we threw it on. At the camper at the lake, it was really hot one day, and they wanted to stay inside. We just threw the Switch up, let the kids take turns on Mario, and they didn’t complain about being stuck in the camper instead of playing outside.
Technology is important, but it shouldn’t consume your life. What are your thoughts with your child and their technology?
It has been off and on lately with posts, as we have been traveling, and had to replace the heating element in our dryer. School has began though, and well, we are finally settled back at home after a great trip to Tennessee following great news about Carters scans being clear, and my arm looks like I got into a fight with a cat from all of the curs and scratches from working on the dryer.
With that being said, we are actually on day 2 of home school, and things have been going great. I want to throw our infographic back up that we created for home schooling, and go through our current process for you guys.
We are in a weird situation, as we have received PCS orders and will be moving to Johnson City, TN October 1. NOI’s are due for both state by August 1st, so we have sent one to each state, and let Virginia knew we are moving due to receipt of orders. Both states have similar criteria, except that testing is reduced to a few years instead of every year. Forms are found online, and can be easily googled and emailed in.
This is always a hard decision for us, as can never decide which works best for Carter. Sometimes we want to go the technology route since he is so tech savvy, other times we want to use structure and video. However, we have discovered he works best with a structured book program. That is why we picked ACE, as they have an easy diagnostic test that can help us figure out where he is academically before ordering the curriculum. We have found out that he is on grade level with everything except math, and we could see that coming from his time at school. With their PACE program, it becomes very easy for us to catch Carter up with doubling up and testing where his lagging is through the grade level.
For Kinley, we are using Abeka, as we used this for Carter when he was in second grade, and had a bunch of the stuff left over. This saved us money, and allows us to accomplish our end state.
This becomes an easy aspect for us, as we already have most of the day planned out from therapies. This makes us choose which free hours we want to do school and work from there. Not to mention that homeschooling never takes as long as a regular school day, and most of the time is accomplished within four hours.
Some states do not require this, however Tennessee does. We must keep an attendance throughout the year for each child, and Kelli made an excel document to easily accomplish this.
Carter is beginning his school year with the CAT test for fourth grade. We need to turn this in to Virginia by August 1st, and we will be done this Friday. This will help us prove that he is receiving education, and get some standardized testing in his record that we keep for him. We have to think about his future, and this will help show his improvement year after year.
Kinley did her testing in school, as she attended public school for 1st grade, even though Carter was removed from that school earlier in the year.
School has began, and we are pumped for this year. With both kids being home schooled, this gives us more flexibility and movement. We want to be able to go on trips, pan our own field trips, and inspire our children with exciting avenues, instead of group ideas. Here we go, how about you?
School Article on why Carter left public school!
Kelli also has her old shop going strong again called Tickle Me Creations. Designs and gifts she has been making for years, she sells on an Etsy page. Below is Carter’s pencil box that he loves. Click on the link below the picture to check out more pencil boxes, which all ship free!!!!!
It is important to consider some basic concepts when educating students with autism and other neurodevelopmental disorders. It provides them with a more meaningful and successful experience and helps them reach a higher potential.
Working with parents and educators for over a decade has taught me some important lessons about what it means to provide a meaningful education to students with autism and other neurodevelopmental disorders. It is easy to get bogged down in the moment-to-moment challenges and lose perspective on what we are trying to accomplish. Too often we employ strategies that address an immediate problem, without figuring out how to build the foundations that are required for addressing the challenge over the long-term. In searching for the elusive “quick fix” we fail to implement some basic but powerful concepts that support learning for all students.
More articles about education: https://fromtumor2autism.com/2019/05/01/school-and-autism/
Here are 12 important concepts every parent and professional should consider when designing appropriate educational opportunities for students with autism and other neurodevelopmental disorders:
Approaching the education of students with neurodevelopmental disorders with these 12 powerful concepts in mind provides a more meaningful and successful experience for everyone involved. Application of these principles allows us to best guide students to reach their highest potential in school and beyond.
Article from Nicole Beurkens, M.Ed.