Mama San-Maré Raubenheimer is raising her lovely family in Malmö, Sweden. When her daughter ,Anje, got diagnosed with autism, the word autism got a whole new meaning to San-Maré. She shared her journey with us …
Autism – a word so often misunderstood. It is a word that never even crossed my mind for a second that beautiful Christmas day in 2011 when Anje was born. Yet, it is a word that has since become so personal to us as a family; which now rolls effortlessly off our tongues. My daughter, Anje, is autistic and our story is one that I am happy and honoured to share with you.
I am smiling as I write this, because just thinking of Anje makes my heart burst with pride and utter joy. This child is extraordinary. I know I might be bias, but she truly is larger than life! She is adored by everyone who knows her. Anje’s incredible courage, her inner strength, perseverance and determination inspires me daily. She teaches me far more than I could ever teach her. She is happy, confident, intelligent, intuitive and has a desire for learning like I have never seen before. Above all, she has the ability to love deeply and unconditionally.
Anje was diagnosed with autism at the age of 2. We were prompted to have her evaluated due to a delay in her gross-motor development when she was 18 months old and still not walking. But I had also been worried for some time as she was not responding to questions or when I called her name. I would often wonder if she even heard me when I talked to her. She had a remarkable ability to sing (on key!), yet she could not talk. She could do puzzles way beyond her age level, but she could not wave or point. She visibly played, moved and acted differently from other toddlers her age.
When we first received the diagnosis, it was a relief in a way. It was an explanation for her behaviour. It meant that now, knowledge could be our power to understand our child and the way her brain functions. We could find ways to communicate and to overcome the challenges we faced.
For the most part, our lives look pretty similar to anyone’s life with a four- and a two- year old. We deal with tantrums, the battle of wills and sibling rivalry. We have a stockpile of tutus, fairy wings and dolls’ houses. Anje loves birthdays, presents, jumping on the trampoline, swimming and playing dress-up and pretend. She responds to praise, seeks approval and experiences the same emotions as any other 4-year old. Anje attends the same mainstream pre-school that her younger sister does. She is outgoing and has friends and favourite people. She gives hugs and kisses generously and empathises with anyone who looks sad or hurt. But as an added bonus, (thanks to autism) Anje entertains us daily with her singing, imitations, quirky sayings and insightful observations, often out of nowhere and profound. Her diverse way of thinking brings another dimension to our family and I am often astounded at the wisdom she has at such a young age. We learnt very early on that just because Anje can not always speak by using words, it does not mean she has nothing to say. And the fact that she does not always respond to what we are saying, does not mean she is not listening. Most importantly I have also learnt never to underestimate her!
Having said all of this this, there is still no denying that, although the rewards are immense, raising an autistic child is scary, emotionally draining and physically tiring. I often doubt my instincts and my parenting decisions. I cry. I try my utmost, yet there are days when even this does not seem to be enough. I battle with uncertainties and with conflicting advice from the experts and the multitude of information available. I try to deal with rude stares or uninformed advice or comments from the public and even sometimes my own friends or family, even though they mean well most of the time. I worry about my child’s presence and future, about bullies at school, about my other child’s well being.
But then, every once in a while, I stop and decide to not let these thoughts and feelings cast a shadow on the beauty of life. I am learning to trust my instincts and my ability to do what is best for my child, because in the end I know her the best. We do everything in our power and utilise every possible resource to provide Anje with the help she needs, but all the while knowing that ultimately our unconditional and boundless love and acceptance is what she needs the most.
As an autistic person, Anje faces certain challenges. Thankfully we are privileged to have amazing people helping Anje overcome these challenges in a loving, caring manner. The teachers at her Montessori pre-school walk the extra mile to assist her, and her speech therapists and other special needs educators celebrate her for who she is, while giving her the necessary tools to make sense of the world and navigate life. At times, Anje has the inability to express herself as the use of verbal language does not come naturally to her. This leads to great frustration. Therefore we use a system of pictures to help her communicate. She also finds great comfort in routines and often struggles to shift from one activity to the next, especially if it is sudden or unexpected. To accommodate this, we use the same pictures system to prepare her for new activities and to visually represent her daily and weekly schedule. As Anje grew older, she has developed ways to cope with frightening situations- mostly caused by sensory overload or when she finds it difficult to assess social situations. She is so brave. She closes her eyes when lights are too bright or sounds are too loud. She has learnt to remove herself from a situation when it becomes too overwhelming, and she now has the ability to tell me when she needs to be comforted or when she is tired.
People often ask me where on the autism spectrum she is. This is problematic, because the spectrum is not linear. Rather think of it as a round spectrum; like a colour wheel. Each and every autistic person will have a different set of traits from the spectrum; therefore different strengths, challenges and characterics. I choose to refrain from labelling her (or any other autistic person) as “very” or “somewhat” autistic or anything in between. I believe that autism is not separate from Anje. Controversial as it may be, I believe that it is not something that needs to be “fixed” or to be ashamed of. It is the way in which her brain is “wired” and to try to change that would be pointless and damaging. Autism is an intrinsic part of her being and shapes the way she experiences the world around her; the way she processes information, which in turn influences her actions and behaviour.
It should be apparent by now that our story is not a sad one. On the contrary, it is not despite of autism that we have a happy story to tell, but because of it. On our journey thus far, we have learnt invaluable lessons about life and each other, which I am ever grateful for. We have gained a deepened understanding of patience, compassion and acceptance. We have learnt to celebrate small victories and progress and to never take anything for granted. Anje teaches us to find joy in the moment, in the simple pleasures of life. But also to reach beyond what we thought we were capable of achieving. We choose to respect and accept her neurodiversity. Our lives are richer for it.
A LIST OF READS THAT HAS HELPED ME TO UNDERSTAND AUTISM BETTER
Image credits: Lenise Ormsby
Image credit: Instagram @sanmarer