Fourth of July 2020 is clearly unlike any other.
The Covid 19 pandemic has kept us from any celebrations and has turned life as we knew it upside down for the last 4 months.
But for my family, it isn’t so unusual to be isolated; to keep our existence in the outside world to a minimum.
To find creative and joyful ways to get through the days in the comfort of our own little homestead.
Paradise in a bubble, as this blog is called is the world we created out of necessity for our boy who struggled so much to exist outside our bubble to the point he wasn’t functioning, thriving, growing as all children should.
His nervous system was damaged. His nervous system could not regulate his body. His nervous system caused him to experience great anxiety, stress, pain that he could not live as a little boy. I learned this is called “faulty neuroception”.
He could only exist in fight or flight. Or worse, freeze and collapse.
His experiences from birth with chronic pain due to severe bowel disorder, or his developmental delays, or his experiences of being in and out of the hospital too many times to count in his first years of life all while trying to exist in a world that simply overwhelmed his entire being.
All sounds, touches, smells, so much visual stimulation, internal pain and and discomfort created so much chaos, stress and physical pain, his only way to manage was to shut down.
Which he did regularly. It is by far worse than any manifestation of a physical behavior we ever witnessed.
The eyes are the window to the soul, as they say; and more times than I can count his eyes were empty. His body and self could not tolerate anymore.
He gave up. He surrendered. He just wanted it all to stop and it wouldn’t.
How on earth with all this information we understood about our boy and his experiences could any adult actually think this little boy was being purposeful. That he was being deliberate with his behaviors. That he was simply “trying to get out of things”. That he is spoiled, he needs more boundaries, he is disruptive and our responses and attention are encouraging him.
I don’t need to go further because it is all WRONG and this type of ignorance and incompetence in several professional fields especially in education only further traumatized him and our family.
It was this point in time that in order to save our son, we needed to adapt the world around him so he could exist. We saw that the calmer, slower, quieter we kept the world around him, he was able to be calmer, more attentive, smile, and function a little bit more. Usually expressed through engagement with us and through play. We knew this approach worked. We knew it helped our boy. We knew it was an extreme response to maintain an environment that allowed him to breathe and be present. But when you see him smile, giggle, eat, and sleep a little more, making baby step gains in things he wasn’t able to do before, when you could see life in his eyes, we knew this extreme measure of shutting out the outside world was necessary for him to heal. And it was helping.
This is what he needed to heal his soul.
It is what his body needed to heal from so much hurt and trauma since the day he was born. It is what his nervous system needed to repair itself. It is what he needed to be a little boy who could grow, learn, breathe.
So we did. We created our paradise in a bubble. It was our families existence. Was it hard, yes especially at first. But when you see results, it is hard to argue it wasn’t an effective way to help him. He showed us through other behaviors such as being playful, being funny, eating food, wanting to engage, exploring more of our bubble within our little homestead. Note: I used the term behaviors , but not to describe something negative. He was expressing himself through these other behaviors that shined a little light like a window into his soul.
It was the safety and connection he NEEDED in order to heal. His entire life was full of pain, not being understood, trying to communicate his needs and wants but time and time again we ( the adults around him) all failed to respond appropriately to meet his needs. His constant exposure to environments like hospitals, doctors offices, that are scary and full of assaulting experiences on his fragile nervous system haunts him still everyday.
It was when we realized his “behavior” was his only way to communicate for his self preservation and survival. In reality this was a blessing because it meant he wanted to keep fighting for his life.
This “will” to survive was an important part to getting through each surgery, each procedure, each terrifying moment that he couldn’t process . Each of these moments could have been a moment that he didn’t survive. His will to survive, his fight to get through each of them one at a time threatened his strength to survive and was enough for us to see this is not what the “professionals “ are telling us.
Knowing his history, his experiences, his existence since birth, how could any adult minimize him to a label of ED, emotionally disturbed? How could any adult say he is “bad” and we are enabling him? How could any adult who has an ounce of compassion look at this beautiful boy and say he is dangerous and violent?
Over the years, we walked away from so many professionals, educators who clearly could not see him with empathy and compassion and a little human who needed so much connection and support to feel safe. A little boy who struggled with the basic human needs for existence. He struggled to eat, his bowels didn’t function properly, he didn’t sleep, he didn’t play, he didn’t explore, he didn’t thrive or make development progress; his body literally did not grow for several years. His experiences left him in a world that he couldn’t trust, where it caused pain, he was helpless and confused and despite our greatest efforts to soothe him, comfort him, remain attached to him, provide for him, and to simply love him with every ounce of our being; his body and mind could only try to survive because his life depended on it.
Every single minute of every single day is a moment we appreciate how far he has come. But it is also moments we use to help him heal. Help him to feel safe. Help him learn trust. Help him feel connected. Help him and see him and all his experiences and be responsive to his needs with compassion, patience and understanding To play with him. To connect with him, even if it means scripting along with him and him needing me to follow the exact same script, the exact same way at the exact same time every single day. Yes, it can be tiring. Yes it can even be annoying and frustrating. We are human after all. However, this was and still is a simple way to connect with him, and his way of co regulating with us. So, yeah I can do this simple act with him, especially knowing how much it helps him.
Our parental instincts were repeatedly trampled on, ignored, criticized and we were just told so many times we were wrong. After the many years of following the professional advice, questioning the professional advice, recognizing their way wasn’t being effective, yet they had no further suggestions or ideas and felt the need to blame us, we stopped listening. Their suggestions in fact caused further trauma and escalation in his “behaviors “, causing regression, causing unnecessary stress that his body just couldn’t take anymore. How is this helping him? It clearly wasn’t.
We knew what he needed, and we knew the extreme measures necessary to help him. Many disagreed. Many expressed deep concerns. Many criticized us and even took our approach to task with calling social services on us. But we were confident in our decision. We knew our son best. We were educated. We had resources. I was reading and learning all that I could from the very early years about the potential impact of chronic pain during those early developmental years. The impact on development of not having bowels that functioned properly, and worse that needed invasive medical intervention everyday!
Our family was our team. We had his greatest interest at heart as he was our boy, he was our daughters brother, he was our guiding light and tour guide of what HE needed and what actually helped. We just needed to “listen”. He spoke through the only way he knew how, behaviors. But when we stopped to observe and listen to what he was trying to communicate . It turns out, he had a lot to say! He was and is a pretty amazing tour guide.
If this 4th of July, 2020 during a global pandemic is any indication that the world around us is pretty chaotic, very complicated, poorly understood, creating trauma and stress in its wake, and our family continues to laugh together, to smile and share in joyous moments together and are existing with comfort and ease between the walls of our home, when so much of the world is crumbling around them, I can only reflect back on all of our choices that got us to this point.
Our very own paradise in a bubble. This crazy thought process and approach helped meet the needs of our son to allow him to heal, grow, learn and become the incredibly compassionate, smart and happy young man he is today. His smile continues to light up our world and his giggles melt my soul.
Whoever said this thing called parenthood was going to be easy? We were dealt this hand of having a medically complex child with developmental delays. How could we not do everything in our power to help him? Our journey didn’t have to be as difficult as it was. This I know is a fact. However, at every dark corner of the unknown, I couldn’t help but stop and reflect on our life. Our crazy sheltered little paradise in a bubble. What is this trying to tell us? What are these experiences teaching us? I couldn’t accept it was without purpose in some way. I had to find good in every step forward, and every step backwards.
Our son, our family have come this far, despite the numerous obstacles placed in front of all of us at every turn, but we always knew there had to be a lesson somewhere in all this suffering. A lesson in humanity, in survival against all odds, a lesson of unconditional love, compassion and empathy. Our son showed us how to look at the world around us with a completely different lens. To see how experiences affect us all so differently. Never being right or wrong, but just different and the great need to respect that in each individual, especially parents to children.
When we see things through the eyes of a child, a lot of the behaviors we may ordinarily judge, shame, or punish are really cries of fear, uncertainty and confusion. It is the child’s only way in that moment to ask for help, safety and love from the parent.
Our experiences as parents , whether we are dealt a challenge card or a wild card that is flexible and adaptable, shows us the most important part of this parenting game is about showing up for our kids. It is about rising up to the challenges that are presented, no matter what. It is about never giving up hope. Hope is what can drive us when we feel defeated. Because let’s face it, some days all we have is hope. Our hope for our son, kept us moving forward and kept our family together.
This is the post that popped up as a memory from July 4, 2014. This picture and post is what sparked this article. It is important to remember the road you have traveled, all the curves and dead ends you encounter along the way. Without these experiences, and then looking forward again, it is hard to see any light that might be peeking up the road. Even if it is just a spark; a spark can set the entire forest on fire. Our kids are full of wild fire potential. We have got to stop extinguishing their sparks. It is time to let them shine. And this light will be your tour guide.
........”4th of July has never been easy for my boy. But this picture reminds me how we have always managed to find the "sweet moments" that are buried under all the chaos of life with Autism. I'm so proud of our boy- he has come so far and works so hard and yesterday he was able to find his own "happy"!
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