Today was a hard day. I didn’t see the hard part heading my way. It was one of those high moments flipped to a down moment kinda of day. It happens. I think we are all feeling a little rough right now. Pandemic and all that has occurred over these 7mo, fires that have created so much smoke in the air, secluding us into our homes, school starts this week. The TV was the catalyst to the down regulation.
Anyone else relate to this?
The square peg trying over and over to fit into the round hole, but it ultimately gets damaged because it just can’t happen.
So then what?
Our school system is one that still says you have to fit into what we offer. There are no options. The accommodations and modifications that can be written into an IEP tries, but for some of our kids, it is still trying to jam the square peg into the round hole. Their nervous systems just can’t tolerate this one size fits all approach.
Whether it is the environment of our traditional classrooms or the style of teaching which can vary so much from teacher to teacher, we know there are many students who year after year are getting lost in this current system.
What are parents supposed to do for their kids? Is this really what inclusion is?
“We will include you, but you have to do things our way!”
Something isn’t right with this notion. Inclusion is just too important to leave it as it is. But how is this helpful and appropriate for our kids who need a square hole education , not a round hole education in order to thrive, develop and learn.
This is so critical to ensure these kids feel safe, validated for their individuality and accepted for their differences which in turn allows them to access the curriculum and learn the way their brains learn. This is not just for our neurodiverse kids. All kids have a specific learning style that needs to be supported to help them be successful.
Maybe it is time to stop trying to change our kids to fit into a broken outdated model and finally create a school system that actually supports the individual learning styles of all our kids. Our current education model was developed over 100 years ago. It is an understatement to say how much our society has changed over this century.
Given this, maybe it isn’t our kids who are the problem after all? Maybe it is a system that has not evolved with our current society to meet the needs of kids in this modern era, this Information age, this technologically advanced society? Maybe it is time to change this environment to allow all of our children to bloom!
Just like one of my favorite quotes.
“When a flower doesn’t bloom, you fix the environment in which it grows, not the flower”- by Alexander Den Heijer
All kids deserve to be successful.
What this success looks like is very individual. This is why we need to create an updated education model that allows for individualism, that supports each child’s uniqueness and learning style, while providing the security and safety all kids need to experience in order to learn.
Whether your child is a square, rectangle or a triangle, etc, each child is their own individual and has their own learning style. Kids all have their own unique needs that must be supported within the educational model. This creates a match between the child and their education in order for them to be successful.
In fact, if you have more than one child, chances are you probably have a square peg learner and maybe a rectangle peg learner, or any combination of styles who each have different learning needs. The educational system must create a match for all our kids.
From Autism Discussion Pages:
“Fitting a square peg into a round hole! Making changes at school.
I totally understand the passion and emotion that goes with struggling with the school systems. However, this is inherent if trying to fit children into a system poorly designed for them. The very structure and nature of the school day is not designed for the fragile nervous systems of many children on the spectrum. Physically, socially, academically, and emotionally the environment is very stressful. Whether it is the sensory bombardment, forced social regulation with peers and staff, task performance demands, informational overload, or emotional regulation problems, often the child on the spectrum is in constant stress in the school environment. Even if the child is meek and nonaggressive, their nervous systems are forced to "shut down" in order to minimize the stress.”
........read the rest of the post below.
Fitting a square peg into a round hole! Making changes at school.
I totally understand the passion and emotion that goes with struggling with the school systems. However, this is inherent if trying to fit children into a system poorly designed for them. The very structure and nature of the school day is not designed for the fragile nervous systems of many children on the spectrum. Physically, socially, academically, and emotionally the environment is very stressful. Whether it is the sensory bombardment, forced social regulation with peers and staff, task performance demands, informational overload, or emotional regulation problems, often the child on the spectrum is in constant stress in the school environment. Even if the child is meek and nonaggressive, their nervous systems are forced to "shut down" in order to minimize the stress.
I understand that we expect the school district to somehow modify the environment and demands, and provide supports to meet the needs of the individual child. However, that is an incredible task for a large system that is designed to meet the needs of children without fragile nervous systems. When we choose inclusion, without ensuring that all the stressful variables are well defined and easily integrated into the overall system, we run the risk of placing the children in an environment that is constantly invalidating them.
In systems analysis, all systems will resist major changes that cannot be easily assimilated into the overall model. When we are asking schools to make very individualized modifications it requires major changes to a system that has to meet the needs of thousands of children. Massive changes to systems take time to evolve. Unfortunately, I realize that for your child you do not have that time to wait. However, we have to remember that we are making the decision to place the children in a setting that is often invalidating to them. I understand that for some children, inclusion can work real well, but for many children this requires many adaptations, accommodations, and modifications that have to be individually tailored to the individual. Large systems that are designed to meet the needs of the masses cannot easily adapt to individual disabilities. When I see all schools struggle with this, it is a major systems problem, not just individual attitudes of school personal. People go into teaching and education to help children grow and develop. If all the school districts struggle then there are issues inherent in what we are asking the system to do.
It is a shame that these kids often have to spend half their day in a setting that is often invalidating their self-worth. Children, regardless of abilities, need to be in a setting that validates there uniqueness and fosters a sense of competence. Except for a few children on the spectrum, this is often not the case. Because of this unnatural fit, many of the children suffer increased anxiety and depression. By the time they make it through middle school, they often start to develop strong feelings of inadequacy that follow them for years into adulthood.
I understand why some parents choose to do homeschooling. But that is not an option for many families, and has its draw backs also. I personally think that schools should build a few "curriculum" tracks that are based on "learning styles", but are integrated together in the same building. All children have access to all resources, but are tailored to their given learning styles. This way all children can benefit from being integrated with everyone else, while their sensory, social, and academic needs are respected and satisfied.
Current federal and state guidelines list numerous supports that schools are required to offer, but not given user friendly ways for schools to utilize them. Many strategies make major modifications to the current class routine or costs the schools much more money than their budgets allow for. The teacher has the job of meeting the needs of the overall group of children, while somehow having to tailor the learning to the kids with different learning styles. Again, if the changes are too big for the system to assimilate, then they will naturally resist against making the changes. Administrations see what is demanded, get overwhelmed and overload, and go into "fight or flight" mode. We have to start where they are at and stretch slowly, while keeping everyone feeling "safe, accepted, and competent."
This series on “School Issues” can be found in the green book, “Autism Discussion Page on Anxiety, Behavior, School and Parenting Strategies.”
I love when this memory comes up. It is a reminder of how far we have come in the journey to helping our son!!!
The many successes, the growth and joyful moments he has experienced these past 5 years is what kept fueling us to never give up, even when so many others did.
Cannabis helped calm his traumatized nervous system down enough for him to experience life through a new lens that was free from pain, free from trauma, free from a world that created a tornado of chaos and confusion with him in the center of it.
it
His big smile and his laughter says it all.
FB Memory from 4 years ago:
The meds on the left are prescribed every day for kids like Ty. Many have no data or evidence for use in kids. They are prescribed "off label" because so many doctor's don't know what else to do for our children when nothing else has worked. They made things so much worse for our son- the side effects were awful and this approach of throwing darts to see what works has robbed Ty of what is supposed to be his childhood. I wish we had tried cannabis years ago, when we first approached his doctor. We were desperate to help our son. Cannabis is medicine! What would you choose if it was your child??
Delayed effect
Aaaahhh. The delayed effect.....hearing school say, “he sat quietly all day. It must be a problem in the home!”
Aaahhh. This is so real for so many of our kids who struggle to regulate their bodies, who are easily overwhelmed in an unpredictable environment, are literally putting all their energy into surviving the hours of a school day until they can collapse in the safety of their home, the car, with a loving parent or caregiver.
This effect is supported by the brain science of the Polyvagal theory and brain state regulation.
Many of our kids struggle to reach the logical, calm thinking part of their brain. Our neurodiverse kids are simply just wired differently. I’m sure we all could make a list of “what triggers my child”.
For example, my kid cannot stand to be around others who are eating. It is the food, the smell, the sounds and his own issues that arise from eating problems over the years. He also cannot stand loud noises, such as the blender or food processor.
It was this way when he was 2, and it is still this way at age 16. It just is a part of him. We have been working very hard for many years to help him better handle these discomforts, to know how to leave the room, or cover his ears. This is a apart of learning self regulation.
But even at 16 he gets so bothered and dysregulated by these sensory experiences and so many other sensory experiences that he deeply feels all day everyday.
Schools are some of the worst sensory experiences for kids who are neurodiverse.
A child at school, if they struggle at all with sensory issues, may struggle to regulate their emotions and bodies (especially in a sensory adverse environment), and this is all before the challenge of academics, and they will not be able to “hold it together” for long.
It is too exhausting to their nervous system.
This is nothing they have control over.
It is an unconscious brain state that takes over when they are overwhelmed , unorganized, unable to process what is going on around them, leading them to the fight flight freeze or collapse state.
If we see a classroom environment through the lens of each of our children and what we know about them, we can begin to understand the best ways to support them even before they go into these environments.
A child holding it together to only fall apart in complete despair is a child who will continue to struggle and even if there are no observable behaviors at school, when they get into the company of a loving parent, caregiver that brings the child a sense of comfort and safety is exactly when a child will “fall apart”.
This can look very different for different kids.
My kid was one that fought. He kicked, screamed, was angry, frustrated and was unable to be comforted until this energy was released out of his body. This was the delayed effect. This was the world around him is collapsing and he can not cope; he can barely breathe.
The more hours at school, the longer he would have to put all his energy into tolerating all the sensory assaults and developmental tasks that were too hard.
For some kids their nervous system keeps them in constant alert state due to signals coming into the neurodiverse brain as threats, they are unable to process the stimuli and this can even cause a painful experience.
The simple skills such as holding a pencil, sitting in a chair are not always so simple. The idea that a child might touch them and their body processes this touch as painful sends a child into survival mode. The anxiety that fills them with the thought that the teacher may call on them, putting them in a spotlight in front of all their peers.
When many neurodiverse kids are always in a high alarm brain state, it does not leave a lot of space to learn, to explore, to be social and to thrive. The delayed effect is real.
It is a signal that our kids are not getting all the proper supports they NEED while in those environments. Despite “good behavior” or no observable negative behaviors, these kids still need great supports in order to thrive and learn.
If we wait until there is an observable behavior, it is too late. The child is in a survival brain state and the only thing that can help them is our love, our connection and our compassion. Nothing else. No demands, no commands, no questions, nothing.
Just comfort. Just being present together.
This co regulation is necessary for them to move out of the survival brain state and move to a calmer more regulated brain state.
Our neurodiverse kids need to be supported in a way that meets their individual needs in every environment they are in. This is the only way they will feel the relational safety necessary to be regulated and therefore use their thinking brain to learn.
Anyone else have a feeling we are never going to get out of this pandemic?
It just keeps getting worse and worse.
We are so fortunate still. We are safe, we are still healthy. We have a roof over our head. We have food on our table.
Never could I have predicted how our “bubble world” of Autism would actually have prepared us pretty well to weather this uncertain time.
When you are a family that was/ is used to not going places; is used to making the most of moments at home; is used to making special memories from the comfort of our predictable homestead, it makes staying home during this pandemic not so unusual.
I feel fortunate that my family has adapted reasonably well to this chaotic time. That’s quite a first . My family adapting well. Those are some crazy words. But so true.
This is just a period of time that we must count our blessings. To take every precaution to keep ourselves, our families and our community safe.
There are a lot of lessons our autism world has taught us, but a particular one comes to mind during this tumultuous time. It really is about creating joyful experiences. This doesn’t require going somewhere, or spending money, or being with others. These were things that my son struggled so much with; to the point he could not exist.
So we made a world for him where he could exist, where he could find calm, where he could feel joy and playful. A world where he felt safe and could explore.
That is why I called this blog Paradise in a bubble.
We found that keeping our sons world small, quiet, minimal stimulation was what he needed in order to heal. Heal from his trauma of medical procedures. Heal from the sensory assault the world bombarded him with. Heal from the pain that became seared on his brain like a branding iron. Heal from the fear of another poke, another test or another surgery.
His trauma was only compounded by his Autism which made his ability to communicate his pain, his discomfort, his fears, his wants, needs or preferences almost impossible during those crucial developmental years. This leads to a child who struggles to trust others, including mom and dad. Or especially mom and dad. But that is for another post.
But I know many people, families are struggling during this time.
But if I could share something that I discovered along this journey. A once lonely journey that few understood, that many judged and felt the need to criticize; but was a path that made us so much stronger than we could ever have thought possible.
Of course as the saying goes, hindsight is 2020. But I have this privilege now. A privilege to see that no matter how hard things got for our boy and our family, we stayed strong. We stayed on a path of creating experiences that brought sometimes only a few moments of joy, but it was joy none the less.
This is what matters. Those joyful moments created a happy memory that also got seared in our brains. Nothing was ever “easy”; but who ever said life would be easy? That being married would be easy? That having children would be easy? Having a child with medical issues or developmental delays would be easy?
We need to appreciate everything we have. Appreciate the little things that come our way. Appreciate the time we get with our families. It is so important to slow down, take notice of things you may ordinarily overlook. The meaning of “ take time to stop and smell the roses” is all true.
This is what our autism world has taught me. Taking notice of the little things. Appreciating a moment of the kids laughing, together. Appreciating a moment we are all sitting around playing with the dogs, together.
Appreciating a quiet moment (because let’s face it, these are rare).
Maybe it was a dinner I prepared and it was a hit for everyone. Maybe it was time Ty and I spent together baking cookies, or just watching him make his favorite dish, Pad Thai all by himself.
These moments made all the hard times worth it. (Like I said, hindsight is 2020). These moments made our days special.
They were never easy, but they were all special.
Because we were together. We were growing together. We were healing together. We were learning together.
This time of chaos, is a time to see the blessings in all the little things.
To appreciate what you have. Enjoy the time together with your kids. We all know how quickly they grow up. This is a time that they will remember as either awful or not that bad considering the circumstances.
Take a moment to connect as a family. My girls and I take an evening walk with the dogs. It is one of my favorite times of the day.
My husband and I have started a new build project. We are building an “office-shed” together. It is fun and now that the kids are older and Ty is in such a better place that we CAN actually accomplish this.
Ty and I still script together. This helps reduce his anxiety and bring some control to his world that would otherwise feel pretty out of control. He and I plan our family dinners. He loves to make us all laugh by being silly with our little dog Oliver. These are the moments that I hope my kids remember. I hope these are the moments that maybe calmed some of their fears they probably have; because let’s be honest, this is a crazy time and we are living through a once in a hundred years global pandemic .
But this is my point. What experiences are you having that might create some joyful moments in this otherwise very unpredictable scary time?
What brought a smile to your face today? What made you laugh out-loud?
Did you have a good moment with your family? Did something stand out in your day that made you think, that was pretty cool?
These are the moments to live for. These are the special times that are there to remind us how fortunate each of us are! We cannot take life for granted.
Some of us learned this a while ago.
Some are learning it now.
Some may never learn this.
But my advice, in case you were interested, enjoy each moment that you see a smile on your child’s face.
Read a favorite book during this time.
Cook a favorite meal that your child helped choose.
Celebrate the ordinary.
This makes the ordinary extraordinary!
It makes for some happy moments that fill your soul.
And one day when we can all hopefully look back on 2020, and reflect back on what a mess the world became for a brief time in our history, our hindsight will recall some special moments that will bring a smile to your face.
A memory that warms your heart.
These are what will get us through difficult times. This is what helped us through our most difficult years. It isn’t about never having hardships. It is about how you weather the storm. And more importantly, who is on the boat with you!
I hope everyone who reads this stays healthy and safe and finds a happy moment that makes you smile.
