There I find myself again sitting on the same desk I sat before, two years ago when my oldest son Tom was diagnosed with ADHD. At that time, it had felt like a relieve to know I had not failed as a mother. The year thereafter my son was diagnosed with Asperger’s which also had not much concerned me because Tom had appeared to be fine, just “a dynamic, happy 4 years old”. Yes, he was a bit slower in developing language and in other aspects to his peers, but I made peace with the idea that he would go to school at 7 years, not already at 6 years. No big deal, we are good.
But today I am petrified to sit here on that desk with our Occupational therapist who explains the long report of her findings. I do not hear much of what she speaks, awaiting her to reach the plateau. This time I know it is going to be big. I try to cover my fear with the appearance of confidence and paralyzed my face with a smile. But internally I am tense and trembling.
Some changes happened to my boy Robin in the past three months or so. My perfect baby boy. Something went so terribly wrong. He got so sick all the time. We were ten times in hospital in the past twelve months and we almost lost Robin due to a septic shock. No antibiotics had effect on him anymore. I remember that day in the hospital, holding his weak body in my arm. The doctors said that it would be normal for small children to be sick, because they develop their immune system. But it did not feel right, nor normal.
After that last hospital stay Robin started to change so much. My sweet, happy baby boy had lost his smile and seemed to be withdrawn from the outside world. He got so easily angry. His rage during his excessive tantrums was unpredictable, so much so that he had hurt us parents and himself. But he is only two years old. My friends told me that its normal “terrible two’s” but I knew that this is not normal. I bought a carpet to lay him on so he would not hurt himself as he did multiple times in the past. My son had lost all his words and forgot the beautiful games we played. He makes an animal like sounds. My husband says he “is just playing bear”. But I know there is something wrong. When last did he say “Mama” I cannot remember? When last did he look at me? He does not look at anyone. He does not play with other children anymore.
His favorite place is the Garden which he wants to water throughout the day, all day. Then he appears to be at peace with the world and is calm. He will be outside for hours and get freezing cold. He does not seem to mind. He does not want to wear clothes, just wearing his nappies. When I take him into the house to dry and dress him, he gets angry and every time I prepare and encourage my inner self to remain calm or put treats in my pocket to distract him. I am careful to keep my face far away from him because he would try to smack his head in my face and last time my lip was bleeding. My heart is so heavy. My son and I had such a close bond. Now, at times, he does not recognize me anymore. He literally goes past me. He does not turn to me when I say his name, but his ears were tested and are fine. He does not get hurt; he does not cry. In the past I thought he was just a “tough” boy. No fall, no bleeding wound, no fever, no ear infection, no bee sting makes him feel pain.
He looks so strong and healthy, just his belly is bloated from the frequent constipation. Weird, my son Tom has diarrhea and Robin has constipation. Tom is sensitive, Robin so insensitive.
And then my occupational therapist is telling me what I suspected: That my son Robin has Autism.
My face is still paralyzed. I nod my head. There are three levels she says, and Robin is on a second level. I know that means severe, my heart breaks that moment I realize the fall. I thank her for her time and professionalism. Robin was sitting next to me on the floor I pick him up and carry him out of the office, through the hallway, into the lift, walk over the parking area to my car. My legs are weak, and I push my feet firmly onto the ground to make sure I am not collapsing. My face remains in the that stiff smile that I forced and engraved. My son is so heavy. As he is sitting inside the car, I use that last bit of energy to get me into the seat. I cry.
My trauma numbs me, and I fall into this deep depression. I call my family and tell them and ask them for help. They cannot believe me, because they saw Robin a few months earlier and he seemed totally fine. Nobody is calling me the next day or thereafter to ask me how things are going or to offer help.
My husband and I are alone and abandoned in this lonely shut down. My husband does not talk about it, he shuts me out.
Autism disabled us from taking part in the “normal life”. We cannot visit a playground with the boys, go in a restaurant, do grocery shopping, have friends over. Its always a disaster, Robin gets a meltdown, people staring at us. It's so isolating.
Two weeks down the line I decided to just tell everyone. I need help, I need support, I need to know what to do.
In our small town almost everyone knows everyone and people are kind: People encourage me to be strong, sme give me a hug, some pray for my family, some write down telephone numbers of support groups or doctors, but one client at my travel office changes everything for me “a child that was normal does not get simply autistic”. That is right. So, what happened to my son? I start this quest to investigate what happened to my son and learn what not even google knows: Autism is a medical condition not a mental disorder. The hidden medical condition which causes the symptoms one sees upon the surface into the wide symptom display. I am relieved. A medical condition should be treatable and that means I can do something about it, and I will. There is a spirit growing inside of me, a voice saying, “I want my child back” and I will come for you Autism and unpuzzle you.
I am learning, reading, and studying for hours for the coming 6 weeks. I lost 8 kilograms during that period, but my flame is unstoppable even if my body is not coping well anymore, but I keep pushing forward. It becomes an obsession.
A new beginning.
Through the published research of the Autism Research Center (ARI) and Professor James Adams I grow my knowledge of Biomedical Treatment Intervention. We change to the Autism Friendly diet. I detox my children at home. I administer the supplement plan. Then we get to know Annalies from SNAP (Special Needs School in Cape Town). Annalies is amazing. She keeps on saying “push through”. She shares her knowledge, experiences and supports us in so many ways. I feel stronger. She and I debate about Biomedical Treatment Intervention which she is familiar with and encourages me to hold me first presentation about “Biomedical Treatment Intervention” in early August 2018.
Biomedical Treatment is effective and within the first few weeks we see the first improvements in Robin. He is less irritable and easier in transitioning; he starts to engage into our world. His smile is coming back. Tom is more calm and his diarrhea is getting better, the first time in the past year.
My son Tom seemed okay but in reality, he was not. I was so busy fighting for his baby Brother, that I had not noticed the depth of Tom’s challenges: His ears are so sensitive, and sound often made him feel pain. He is so depressed, sad, cries easily and quickly is discouraged and gives up. He cannot make or hold friendships. He almost never gets invited to a birthday party and as a mother I pray he does not notice it.
Step by step I am fighting for my boys and Biomedical Treatment become my toolbox I use to manage my children’s health. My husband and I split the job among us. He is in charge for therapy intervention and I am in control of the dietary intervention, supplements, and probiotics planning, whilst keeping up research.
We push through for two years and step by step we conquer our children back. We keep pushing through. I no longer feel helpless or hopeless. I feel empowered to guide my children through this.
And there we celebrate those special moments: That moment when our children say “mama” again, that moment “when they look at you for longer and you count the seconds, they are holding eye contact”. That moment when they stop self-hurt. That moment when they start playing with other children again on the playground. Those moments when their confidence starts to grow, their smiles lightens the room, they enjoy learning and showing off their skills in math or puzzling. Those many moments which sum up to your child still being Autistic but being happy and blossoming within their neurodiversity.
I cannot count how many times I whispered “thank you” into the universe, while watching my boys “recovering” their smiles and finding their way back into our world.
This journey has encouraged me to reveal what we are dealing with: Uncovering Autism’s true nature. To share the support among us parent and help us push through on that pathway of Biomedical Treatment. To grow the flame of empowerment and positive spirit and celebrate our very own moments of success and blossoming.
- Alexandra Schimanksi