Every one of us is a package of beliefs, perspective, drive and influences. Those things about us make up who we are and who we can become. Belief is a simple six letter word. Do you see it softly, blowing in a breeze, or emblazened in fiery red? Are you open or closed in your beliefs? Are they solid or subject to change?
From before I was pregnant, I had a solid core of beliefs. I knew the essentials of how I would raise my child and how “I” would shape him. Yes, I understand that he is his own person and has and will have, his own beliefs. As young as he is though, he is subject to what he takes in through his senses, the influences on his life. I can say, without any doubt, that as his mother, I spend the most time with him, and I have the power to be his strongest influence.
That makes the core of my beliefs important, not just for me, but to shape who he is and who he will become. I’m not talking about politics or religion. I am talking about the foundations from which all of those other decisions come forth. His core. His belief in himself.
Throughout my childhood, my mom used to tell me two things that stuck with me for life:
- Anything anyone else in the world has used their minds to do, you can do, just as well, if not better.
- Never depend on anyone, but yourself for anything.
Those are core to who I am today. They’re strong, certain, and true to me. I am teaching my son those beliefs too. I think each of us has certain core wiring within us- that determines what we believe and that makes up who we are. That wiring influences all our decisions. Who are you at your core? Inevitably, the answer comes with, “I believe in…”
So the point is when, as parents, we receive the diagnosis of autism for our child, are we really “grieving”? I don’t think we cry at some mythical child we supposedly “lost”. For me, I don’t remember the crying. I remember something else.
For me, I was shaken at my core. Everything that I was inside – was tested. Did the shaking of my core cause me to shatter on the other side? Did I pick up some pieces and leave other “core” beliefs on the ground to be swept away in the wind? Well, it’s been a long process, that still goes on. I rock, shake, and bend, but overall, I have remained true to my beliefs.
The way I see it, there is a mainstream world culture. It beats to the drum of “conformity”. There’s a strong current demanding that we bend to the will of the masses. We all want to get along.
There was a belief that the world was flat and that the sun and moon revolved around the Earth. And if you dared to go beyond what the majority believed, you would be laughed at, ridiculed, jailed, and even burned at the stake as a witch. So, certainly there was motivation enough to follow the masses.
The majority has a certain set of beliefs about autism. Within those beliefs, they subject our children to “standardized” tests and measure our children against children without autism. They use words like delay, no cure, severe, “sorry”, “sympathy”, “no evidence”, “no cause”, “hold back”, “cognitive deficit”. If these do not shake your core, well, you haven’t heard them. We all feel the gut wrenching. Is it pain? Grief? It’s stressful because, at least for me, it shook the core of who I knew my son to be and tried to instill the ugliness of doubt.
And when you push against a current, a wave of opposing beliefs, it can be exhausting. It can be hard to find the pocket that will take you where you need to go. To provide the air, while diving underwater again and again, to come up and fight and remember to breathe. But either you use your core to keep you going, despite exhaustion, or you fall in step with the opposing current, and call that acceptance. Sadder still, you fall victim to the undertow and go dark.
At diagnosis, I was informed my son was borderline cognitively impaired. Those words were the current. I became a boulder against that current. It had to swirl and rush around me. If he had been cognitively impaired, my core belief is that I would have known that too, loved him just as fiercely, and built my decision making for his best interest based upon that. But I did not budge. They were wrong. I knew that. In my soul.
I was advised not to put my son in kindergarten this year, at age five (5) and told he was not socially or cognitively ready and would probably have to repeat. Again, the current tried to push me. But I remained steadfast. Not only was it wrong but I knew he could succeed with neurotypical kindergartners and an aide. And it came to pass, as I believed.
There may be 1000 reasons that is not right for you. It was my child, my belief. He has excelled in kindergarten, academically. He will be graduating kindergarten in less than a month. Socially, he has vastly improved and is learning more each day. They were wrong. My son’s world is not flat. It’s a beautiful strong sphere of beauty.
I was told there was no “diagnostic study” and no treatment for his deficits. Not my belief. I found diagnostic studies, EEGs and MRIs. Then, I was told my son might improve on medication, but there were no guarantees. I knew there would be treatment – and that his deficits would improve. I did not know how or what – just that it was.
My son’s 6th birthday is this month. His PPVT-4 form A, receptive language, raw score was 33 (age 2 years and 7 months) six months ago. In March of this year, his re-tested PPVT-4 form B raw score was 73 (age 4 years and 6 months). The report said: “This indicates significant receptive language growth beyond the expectations relative to previous function and the 6 months duration between testing.”
His EVT-2, expressive language, form A raw score was 47 (age 3 years and 11 months). In March of this year, his EVT-2 raw score was 78 (age 6 years and one month). He is not yet 6 years old. Again, the report notes, “This indicates significant expressive language growth beyond the expectations relative to previous function and the 6-months duration between testing.”
Beyond the expectations – beyond the existing science, beyond the odds, he astounded them with his scores. “A difference of this magnitude (18 standard score points) is significant at the 0.01 level and occurs in less than 10% of the population T’s age.”
Is that luck? Some things are beyond existing science. From pure science, you could say, he had a really good reaction to medication – plain and simple. Would he have had that same reaction if I did not believe in him? And if he did not believe in himself and try?
Some things stem from our cores. From our beliefs. We not only shape who we are, we shape who our children are and who they believe they can be at a young age. We let them know what they can achieve. We believe in them. And then, they, in turn, believe in themselves.
I’m not saying I can change the world by some crazy belief. My son is not going to sprout wings and fly no matter how much I try. But in my core, and in my heart, I know he is intelligent and has the capability to succeed. His communication is different – his outward signs are not ones that can be easily read.
Sometimes, my core is shaken. But I know now, that no one will keep my child from achieving anything he wants to achieve.
Believe in your strength. Believe in your child. Let your child know you believe. Tell your child you believe. Only through belief will you and your child beat the odds and soar beyond the limitations of those who don’t.
Lisa from Between Hope and a Hard Place is our new winner! Yay to Lisa and thanks to everyone again for participating in going "blue" for Autism Awareness Month! ]