From this moment in the present, I return to the beginnings, the most difficult ones.
How much easier it would have been for me then, on the threshold of the fight with autism, if I had known all these things that I know now. I would have liked to have known, as a parent, that the autism diagnosis is not the end of the story, but just a new book, different covers of the book that contains a text filled with experiences, uncertainty, the most sincere love, a story about a different and deeper life experience. A book that would be a huge shame not to read. At that moment until the diagnosis was made, I remember, every day was filled with the “loudest” anxiety, which was completely silent for the environment, fueled by the realization that something was different, by the thousands of questions in my head: Did I do something wrong? Did I do everything I was supposed to do as a parent? Will my child be okay? Will he ever address me with the word “mom”?
Why should I have such a fate? What will the future bring?
In those moments before our journey down the autism path, I wish someone had told me that my child would not disappear with the diagnosis, that his value and individuality would not disappear. Autism will never define my child, it will only explain his way of life, his way of experiencing the world. He will remain my little one who smiles most sincerely, who expects my protection, devotion and love, a child who has his own hopes and dreams, fears and joys.
I wanted to know that it was okay to grieve. It was perfectly okay for my soul to ache at the moment when it became clear that the image I had unconsciously
created for the future would become the past. Now, when I think about it, grieving was the bridge to accepting the situation. The grief was not the result of a lack of love, but a direct consequence of the clash between my expectations for the future, for my future, the future of my child and the entire family, a future full of carefreeness and the reality that surrounds us now, full of limitations, conditions, labor and work. In fact, what was actually happening in those moments during the grieving process, and then the acceptance of autism, meant a reshaping of my personality, of my vision of life. While I was grieving for the broken pieces of my imagined future, my child opened up space for me to a magical present, the opportunity to get to know his unique personality more and more every day, a future that would make me a better person even when my feelings would not be able to “turn off”. On the contrary, I should have known that these were waves of emotions that would splash over me for a long time, when I least expected it.
Some days I am strong and calm, other days I cry without a clear reason for it at the moment. Both states are part of the same journey called the life of a parent of a child with autism, a life that teaches us to exalt even the smallest signs of connection, the smallest steps of progress that bring the greatest joy, things that before, before this new version of myself, I might not have paid attention to. The sadness will not disappear completely, it will only become softer, quieter. It will turn into acceptance, and acceptance into a new and infinite hope, even in those moments when nothing will be “right,” but it will be real, ours.
I should have known that I have a right to time. As much time as I need to deal
with the storm of my feelings. I have a right to feel. This process that I went through as a parent has made me the parent that my child deserves – present in the moment, aware of the greatness of the little things, a parent who is not guided by expectations for his child, but by the unconditional love he receives from him.
In that world that awaited me filled with hours of therapy, sensory difficulties, daily challenges, I wanted someone to tell me that there would be days when I would have immense strength, strength that would move mountains, but also days of complete exhaustion, unwillingness to get out of bed. And that was completely okay. The reward is priceless, the small victories that for others are “unnoticeable”, but for us are small miracles, the first look, the first word, the first hug… My child does not need to be “fixed” to fit what the majority consider “normal”. Oh, no, he just needs to be understood. The world is constantly asking my child to adapt, but I stay here to remind the world that my child has his own world in which everyone is welcome, a safe place where he can be exactly who he is, unique.
And most of all, I wanted someone to tell me that I was not alone. In all that storm of emotions, experiences I never thought I would have, fighting with windmills, there are other parents who sometimes break into a thousand pieces and cry just like me, who rejoice in the same little things that I rejoice in, who understand what my child and I are going through without me having to explain a word to them.
Autism doesn’t change the destination, it just changes the path. It may have more twists and turns, but it certainly leads to a future in which we will be blessed to experience the deepest love.
Every parent of a child with autism, on the threshold of diagnosis, should know:
– No, you don’t have to be a perfect parent. It is enough to be here, to be
dedicated, present and full of understanding and patience, with a new,
different vision of the unique world that you will create together with your
child;
– Small steps will more reliably take you to the final destination. You don’t
have to do everything at once. Allow yourself time to learn and slowly
process all the information, translating it into specific activities that will help your child;
– Do not compare your child with other children with autism. Autism is a
spectrum of symptoms. Progress is not the same in all children. The only
comparison you should make is to compare your child with yourself from
the previous day. Don’t forget, small victories are the foundation of your
child’s great achievements and the source of the greatest joy for you.
Prepared by:
Ana-Marija Ciglenjak Simonovska
