What I wish someone had of told me in the beginning
It makes me teary when I think back to the beginning. How hard it was, the lack of certainty I had and the lack of trust I had within myself and the system. I was barely surviving, barley coping with two kids under 2 and now a diagnosis. I left that paediatricians office with nothing but grief and loss. I had no direction which made it hard for me to know where to focus my attention. Was it with my son’s speech? With his gross motor skills? Did I need to look at his diet? What about probiotics? I didn’t know where to start and I was a mess.
My biggest problem that I was facing at that time was what support I needed to find for my beautiful boy. What was in my control to help him progress. What I didn’t realise is in fact, I had two major problems. Yes, I needed to work out my plan of attack, but I also needed to address what was going on with me. How was I best supporting me? Like most mums, we put ourselves to the bottom of the list because someone else’s needs are always far more important than our own. I thought it selfish of me that I address what was going on in my own head. That would take time. Time that not only did I not have, but time that I was taking away from research.
What I quickly realised was that this next chapter of my life was a marathon, not a sprint. I was getting ready to run the race of my life and I better get prepared for what was coming. Most mum’s I encounter begin this journey like they’re about to climb Mt Everest in thongs. Ill prepared for what was about to come their way. Blizzards. Frost bite. Lack of food or water. Lack of communication.
When you’re preparing to climb Mt Everest – you must train. You train to improving cardio endurance, strength endurance, and being comfortable carrying a daypack uphill for long periods at a time. When you become a special needs parent – there is no training. No one is preparing you for what you are about to encounter. In most cases you do it alone and not well. You cry in silence. You grieve in silence. You fumble your way forward in silence.
But if there’s one thing, I wish someone had of told me at the beginning is – you’re not alone. This journey isn’t meant for you to do it alone. Just like the saying goes it takes a village to raise a child. Well, it takes an even bigger village to raise a child with special needs. The quicker you can lean on your community the quicker you can feel supported when the days are dark and the feelings of helplessness envelope you.
Here at You Are Seen I am creating a community. A community where you can feel safe. You can feel open to share how you’re feeling and what challenges you are facing knowing that there will be zero judgement. There will be no eye rolls in this community. No messages of how your child should be conforming to what society says so. This community is full of love, support, humour and fierceness and determination that can only be recognized by a parent of a special needs child.
Don’t do this journey alone. YOU ARE SEEN.
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