If he could write to me, this is what I think he would of said.
The First letter in a series letters from my 3 year old child to me, his Mother. Bless his cotton socks. My reply of love follows.
Please open your eyes.
Here I am. Raw. Innocent. Pure.
Look and see me. The real me.
I am your child. Your love.
I share your biology. Your DNA.
I am dependent, fragile and new.
I am Me.
I am whole and complete and desperate for your love because I am your child and you are my mother. It is the natural order of things.
What is this Autistic I hear you talking about? What does this mean? Am I Austism?
Why are you anxious? Being so connected to you, I feel it. I feel everything you feel. It scares me. It makes me worried. You are my security, my everything. Are you going somewhere? Are you leaving me?
Why do you look at me with such concern? Am I sick? Am I wrong? Do you not love me? No, ……..You love me. But do you really love me? I ask because I’m not sure you see me. The real me.
How come we go and see different people, therapists I think you call them? They are nice but I don’t like going. Can you not see I am happiest in my home where everything is familiar and predictable?
That is where you are.
In between your eyebrows, there are frown lines, like train tracks on your forehead. I don’t know what is means when your forehead crinkles like this. Am I not answering you right? Doing something right? The furrows; they are there often.
Mummy, please see me.
Know me. Understand me.
Try hard Mummy because I am your child and I need you. I need you to help me, to decipher this world and mostly, to love me. Always.
My Letter of Love to Him
My Dearest Child, My Mini Giant, My MG,
It has taken a little while, but I see you clearly now.
I see the real you. Your core, your soul, your purity, your spirit, your love. You.
You are beautiful, unique, sparkling and rare. An individual and my special child.
I treasure your every breath.
And to answer your question:
No my darling. You are not “Autistic.”
You are my child who has Austism.
PDD-NOS to be precise. It means you can struggle with things like social interactions, self regulation, understanding non-verbal behaviour, and sensory hypersensitivity but your challenges are not so severe or some even present, to be classified as having “Classic Autism.”
These words are medical labels my love. The Doctors also refer to Autism as ASD. (Autism Spectrum Disorder). The titles help health professionals identify areas of disability. Your obstacles are serious, real and when know about them, we can work with you to overcome them, to help you function more easily. Together we will quieten the noise of your world to make it a little less scary and overwhelming.
I will write about what this means and how we can implement strategies to help in my next letter.
At the moment, I want to keep talking about how I do now see the real you and what you mean to me. Most of all, I want you to know that I love you with every atom in my body.
You are and will always be, firstly my beautiful child.
This ASD journey has been unlike anything I have ever experienced before. As your mother, I am not sure I have ever been prepared for this. A mad whirlpool of emotions has spun my thoughts into a frenzy each day as I have tried to madly get up to speed in order to best understand you and how you view life.
Because what you see, think and feel is very different to how I process our world.
I have panicked and cried and fretted and mourned for you. Unsure of what I am doing or if indeed, I am the best person to be your guide.
As your mother, I have lost my way in your diagnosis. Trying to learn everything yesterday.
Focused solely on the label, I forgot that you were my little Angel. My child. I saw you equally as my son and as a patient to treat; Autism to battle.
Trying to fix you, yet you were never broken. I was looking for anything that would plaster over the challenges you faced.
I did this with love in my heart but concerned panic in my brain. I was very conflicted, confused and close-minded.
I am sorry.
I’m sorry that I was blind to the real you then. That my emotions and frenetic thinking pulled a thick, heavy curtain between us. Perhaps, shielding you from me for a time. Unintentionally, making me less emotionally accessible. Not fulfilling my role as a mother in the way you needed.
I have cared for you, played with you and tried to be present. I have fed, clothed and bathed you. I have rocked you to sleep, sung songs and danced with you. I have calmed your body and soothed you. I have nurtured you to the best of my ability but always in my head was the PDD-NOS. Like a coal miners head torch shining constantly from my forehead, a spot light putting the Autistic label in the lead role and centre stage.
Activities I planned were always around therapy outcomes and skill acquisition. Educational, social, behavioural. “Lets draw a smile. It means you are happy. Like a sideways banana, yes that is a smile. Happy feels like warmth in your tummy. Your heart might beat a little faster. Your body can be tingly. You may want to run around. Happy is a yellow colour….”
Nights spent researching, learning, questioning. ABA therapy. Gluten free/Casein free diet. Supplements. The importance of the Brain- Gut Axis. Social stories. Visual aids. Sensory blankets. Sleeping Aides. Melatonin. Hours upon hours in the dead of night desperately looking for the Holy Grail that would “save” you.
Only, you don’t need to be saved or fixed.
You are not damaged my darling. You just need to be seen and understood. I know this now.
Like trying to smash a round peg into a square hole, our world is frightening, chaotic and confusing place to live for you. Dominant yet unwritten rules seem to form a delicate and intricate web that is the foundation of our human interaction. Operating in this neurotypical world, everyone seems to intrinsically know what these invisible rules are, except you. This in part, is what makes living with Autism a challenge for you.
You are not alone. As a neurotypical individual, those rules confuse even me at times. But I am here to help you navigate those situations and learn some general guidelines.
My darling, you have been unconditionally accepting of me. You have also taught me so much.
You teach me daily to be patient. To stop, breathe and to listen.
You teach me daily what it is to be a mother.
You teach me daily about trust.
But most of all my dearest child, you teach me daily about love. How to love, how to be loved and how to accept love.
So my gorgeous Son,
Forgive me for my mistakes.
I see you.
You are my child with Autism. Autism does not define you.
I see you.
You are so much more, so much greater than any diagnosis.
I see you.
My love. My DNA. I will always love and adore you, for you.
You are seen.
Obsessed with shoes, I am the classic over-thinker trying to get my balance right in a world that is filled with expectations.
I’ve been labeled driven and borderline neurotic, fun, crazy and focused. Having left the management consulting world behind, the newest addition to my collection of labels is: Mum.
Now a full time Mum to a gorgeous boy and a wife to the love of my life, both these intelligent and quirky males are part of Autism Spectrum. In addition to our 2 nutbag, nosey and noisey hairy hounds, they all teach me daily what patience, love and understanding is.
Generous, Mother, Cranky, Wife, Wise, Smart Arse, Listener, Anxious, Strong, Emotional, Clinical Advocate, Funny, Known-to-Love-A-Drink.
These are just some of my labels.
I am all these things and so much more.
Just like you.