This blog page was started over 10 years ago. It was a way for me to express myself and all the feelings of raising a child with medical issues who is autistic.
The first thing you may notice in this update, I choose to listen to the autistic community and now use identity first language. That’s one part.
Secondly, compared to when I started this blog, we were in crisis. Crisis everyday. Seeking professionals to help us understand our child and the behaviors and struggles that he expressed everyday, often all day long. We wanted to understand what we were seeing and so we could better understand how to help him. We looked external because this is what parents are directed to do.
A big part of this journey has led me to the place of parent empowerment. We , unknowingly gave away our parental power when seeking to help our child. We just didn’t know. But the path forward led us to see we needed to take back our power because we know our child best. We are his connection. We are the ones who love him unconditionally. We are his true advocates who will never give up fighting and supporting him. This is what led us to this point. When things got hard, others turned away, shrugged their shoulders not knowing where to try next, and sadly even giving up on our son. This felt like a rock in the pit of our stomach. It was like an attempt by others to take away any hope we had for his future.
This was not one person, not 2 people, many people, professionals.
Why? Because they did not understand the most up to date brain science that helps us understand our kids who struggle with challenging behaviors. It really is that simple! They did not understand because they were following the old paradigm “ of behaviorism” and operant conditioning.
Now we understand why all the methods suggested to us were ineffective. And to be quite honest, I am so glad they were ineffective. Because this meant we had to dig deeper. We had to explore the true meaning of his behaviors and see that he was struggling and needing our help.
He was never a bad kid. Despite being told some awful things about our child, and projections that were downright terrible, he was our kid who had a lot of terrible experiences that were not in his control starting since birth.
It isn’t about what is wrong with him! It is about what happened to him! And let me tell you, a lot happened to him starting so young. Chronic pain since birth, poor development, hospitals, doctors, tests, surgeries, and that is just in the first three years of his life. So yeah, a lot happened to him. Thank goodness he is a fighter, otherwise we would have lost him. He had to fight to stay alive. He had to fight to get us and others to see him in pain. He had to keep fighting because no one seemed to be listening. We knew something was wrong, but we’re dismissed too many times I can’t even count them. But we didn’t give up. We would never give up and we never will. Thank goodness he never did.
This old paradigm of "there is something wrong with my child" started an awful cascade of inappropriate and even abusive interventions. Interventions that were well meaning, but we just didn’t know at the time the toll it would take on him. The trauma that would occur because the protocols and therapies to help autistic kids was so outdated. I’m talking about Applied Behavioral Analysis. This is what all parents are told to start as soon as they get an autism diagnosis for their child. We believed the professionals who told us that this was the best form of therapy for supporting our child. What they don’t tell you is that it is all based on animal studies, pigeons (yes pigeons) and rats and has deep deep roots to gay conversion therapy and that the researchers believed the autistic person has a mind that is empty and can be manipulated and molded to what the therapists wants to see. If you think I’m wrong, just go look it up. The evidence is clear, ABA is dehumanizing and abusive. This is why I am against its use and we need to stop ABA. Especially because there are better alternatives and many other therapies, resources that are actually proven to be beneficial for kids and people who are neurodiverse, are challenging, or any other struggle. Many of us have brain wiring differences. It is what makes this world beautiful. These alternatives that can help support our kids is all founded in the neuroscience of development and understanding brain state of regulation. That’s it. That is the secret everyone needs to hear. When kids and adults struggle with anything, it is rooted in their ability or inability to regulate ones own nervous system. It is a dysregulated nervous system that interferes with a child or persons ability to control their emotions so that they can access their thinking brain and make decisions based on a person thinking rationally about it.
There is research proving how the brain develops and it develops in a sequential manner. There is no skipping developmental processs. This development is what lays the foundation for the next step in development. And then the next and the next.
Dr. Bruce Perry calls this the Neurosequential model of development.
When we saw none of the “recommended therapies” were effective in helping our son and helping us help our son, we knew something had to change. What we also saw was not only was it not effective, it was causing further issues for him. It was harming him. It was harming our relationship with him. It was destroying him from the inside. We could see it in his eyes. So the help we were told to utilize, was in fact traumatizing our son.
We had enough knowledge and experience to know this was not going to continue. We knew he had sensory experiences that caused him great pain and fear as sensory experiences can (I know this first hand). We knew that his body experienced the world differently and his needs were more extreme and very unique because of his past experiences. We knew when his world was right, when his needs were all met, his mind was regulated and his body calm. This is when we saw our boy shine and thrive. Best part of seeing this, is he was happy and joyful. We knew it was possible. We knew his spirit could shine. It just took so much to get him there. Sometimes it seemed impossible. But we did always try our best. And of course always had our sons best interest in mind 100% of the time. But as they say, when you know better, you do better. This is what we had to do. We had to do better for our child. Even if it meant going against mainstream thinking. And this included going against professional advice by several doctors. They didn’t know better. They were stuck in this idea that kids are either well behaved, and good or not well behaved therefore bad. It comes down to compliance. And if we were just more strict, more consistent, more this, more that, then everything would be fine and our son would not behave in the manner he did. He wouldn’t hit, he wouldn’t run away, he wouldn’t get aggressive or yell or throw objects or not listen to us or other adults.
I guess when kids are considered well behaved, I believe another way to say it is, they are compliant no matter what. My son could not be compliant. If he was a compliant child who didn’t send signals that something was wrong, that he was in great pain, that he needed us to understand so that we could help him, he would have died. Most parents don’t have these more extreme experiences, especially early on that drive the narrative of something is wrong with our child and he is communicating the only way he knows how and he desperately needs us to understand why!
The why is what steers us to meeting the child’s needs. The why is where their struggles are rooted. The why is what we sought from the time he was 5 days old. The why is what we knew was driving him to struggle and communicate he needed us to pay attention and see him struggling. Whether a child has a medical issue as our son, or a diagnosis, or is just simply a more challenging child in the adults mind, we must look to ourselves first to see what is my role in this? Am I helping my child feel comfort and secure in our relationship? Am I meeting my child’s needs so that they can grow, develop and explore their world as children do? Is my child signaling through “behaviors”, tantrums, or other observable challenges that I interpret as my child being non compliant, difficult or even misbehaving? Am I the calm, regulated connected person I need to be so that I can share my calm emotional brain state of regulation with my child because we now understand that only a calm regulated connected caregiver can calm, soothe, regulate a dysregulated child.? Is this what I am doing? This is the million dollar question that every adult needs to ask themselves before they even approach a dysregulated, upset child. Without this understanding, we, the adults, are more likely to escalate a child who is struggling. I know I am very guilty of this. I simply didn’t know. Behaviorism is what we thought was the correct path to help our child. We were told this by pediatricians, psychologists, therapists, psychiatrists, teachers, educators, and many other professionals we had on our team. Yes, we were trying every avenue to help our son. We were also fortunate to have resources that many families don’t have available to them. But what do families do when everything they are being told to do to help their child, isn’t working?
We left them all. We stopped ABA. Our son was already not attending school, because he literally was not capable of attending school. They did not understand how to support him and his experiences while at school and it caused more trauma for him. It was clear through his behaviors, he did not have the ability, skill or strength to attend school at that time, so for his well being I homeschooled, unschooled him for 9 years. BTW best decision we could have made. This created the best opportunity for him to pave his own path of learning, using his interests and developing his internal motivation to keep learning. This was what we hoped this experience would be. He is an excellent, motivated learner who loves history and turns out is an amazing writer. He struggled to write for many years. When he was younger he loved typing wonderful stories on an old alpha smart. But one day he stopped. He was about 9 or so. But now he is a great student. I don't and would never pressure him to do his work. He does it on his own, independently and is driven by his own motivations to learn and succeed. He us now talking about college. More on that later.
After years of stopping all these external therapies, educational experiences, and honestly slowing down the world around our son to a pace that he could function, thrive and be happy in, we saw for the first time some growth and progress. We followed his lead. He was our tour guide in the life of Ty. He was allowed to just exist. We met him where he was at at any given moment. We focused on healing our relationship so he felt safe and once again he could be safe with us. Remember how I mentioned the neurosequential model of brain development?
Well, that is very important to understanding how to move forward when supporting a child that was complex. He was and never has been a bad kid. He wasn’t a bad baby, he wasnt a bad toddler. He was never a child that should ever be viewed through a lens of being good or bad. No child should be viewed this way. This is the shift in our minds we all must make so that we can actually SEE our kids for who they are. Our kids who need us to love them unconditionally, to be present with them when it is a good moment and when it is a bad moment. The bad moments are the ones they need us the most. Being seen, present and connected (as Dr. Tina Payne Bryson and Dr. Siegel mention in several of their books). This is what kids need to feel safe and secure. Feeling safe and secure is what all kids need to develop and grow in each stage of development. It is feelings of safety in the presence of a connected caregiver that brings our children forward on the path of childhood.
I wish it was some deep dark kept secret of what kids really need, and even the kids who have more challenging behaviors. But it really is this simple.
Now, don’t get me wrong. We still have many challenges. Our son still struggles in many areas. He has developmental trauma from all his chronic early pain, hospitalizations and experiences that he probably doesn’t even remember. We work every day to repair and to gain his trust. Trust is very hard for him after so many negative even painful experiences. His nervous system never knows who to trust and what someone might do to him. This leaves him in a high state of arousal and alert. Always on guard to protect himself. His body just doesn’t forget. As Dr. Bessel Van Der Kolk says in his book “The Body Keeps the Score”, this is in fact what happens. The trauma lives in the body. It can be triggered and the person won’t even know what happened. Except that the trigger causes their brain state to immediately react and the fight, flight or freeze response hijacks the limbic system of the brain and there is no more thinking. In my sons case, he tends to flee, escape -RUN. This is good. Movement is regulating, escaping in the moment to get away from a perceived threat is good. He always escaped. Unfortunately, in ABA, behaviorists tell parents, like we were,to not let them escape. That the child must tolerate and comply with whatever is being asked of them despite their bodies wanting to escape. Behaviorists will stop a child from escaping, they will block an escaping child. They see escaping and “getting out of" whatever it was they were asked to do and are now attempting to flee from it. This is survival! This is all done without any understanding of WHY the child’s nervous system is commanding the body to run. Behaviorists just see it as a behavior that needs to be fixed. Needs to be stopped. Needs to be replaced with a "more acceptable " behavior. More acceptable to who? It is without any regards to what the child needs or the why that always lies beneath the observable behavior. It is all about control, 'do as I say' and forcing compliance no matter what. This is exactly why ABA is abusive and needs to be seen as an outdated therapy that is no longer relevant in 2021 and to put this profession out of business so that it cannot harm another child or any person again. This even goes for all the nice, well meaning behaviorists whose intentions are in the right place; but can’t see past what the therapy actually does to a person.
This model has followed students into schools and has become so pervasive in our society because we see people who experience the world differently, who may act different than what society has set as the “norm” or that have needs that are considered different, as people who need fixing. We must think outside this predescribed box of what society says is normal and correct and realize there is a whole lot of other fabulous boxes , each one for each unique individual as we are all unique and should never be forced into someone else’s box.
My son has given us the greatest gift. He gave us the gift to see the world through a new pair of lenses. This has allowed us to see him for the amazing kid he is, to understand him and do our best to meet his needs. To always see him not for his struggles, but to see him and to know he is always trying his best. “If we see our kids differently, we will see a different kid”- Dr.Stuart Shanker.
Our journey has been quite an adventure. We could never have predicted where our son would be today. No one else could either. The difference is, we never gave up. We knew if we could just understand how to meet our sons needs, that it would catapult him to his future. Which is exactly what all kids need. Diagnosis or not. All kids deserve and need parents, caregivers, etc that see them and meet their individual needs and never give up on them. They need to feel they are loved unconditionally. That they make a room shine when they come in. That we see them with soft eyes, a warm heart and connection that can never be broken.
This blog follows the path of how we got to where we are. But the only thing that actually mattered, was that we followed our child’s lead as to the best way to meet his needs. With our own flexible, predictable and constant sources of love and healing, we were able to grow as parents to see what our child needed the most. Us! This has helped our family heal and has brought a new found understanding of what it means to be happy and live. We still find the most joy in our “Paradise in a bubble” because this is where all of our nervous systems are connected and calmest together. It is just what this family needed. It is the solid foundation we all needed and can always rely on, in both good times and in bad!
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