Putting my hand up in class… no way

Going up on a stage to preform… not me

Talking to people I don’t know… is there anything worse

Feeling out of depth in new situations… yep me.

This used to be me and I bet it’s a lot of other people out there too. I had the confidence of a gnat growing up and into my early adulthood, and even then I think a gnat would have slightly more. I was shy, hated talking to people I didn’t know, would always be the one on the edge of the group, nodding and smiling wishing I was anywhere but. Having children at first didn’t change this. Yes, I went to toddler groups but made sure I went with someone I knew. I hated going to the weigh-in clinic and I never asked questions and I just did what I was told. 

To be told that your child has a disability, special needs and will need regular checkups, investigations and so on didn’t really change how meeting new people made me feel. I hated every appointment in the beginning, would nod my head and give permission but it was like there was someone else inside me answering. I would get butterflies on the way to the hospital for hearing checkups and get myself all worked up, I would sweat, feel sick and then I would break down on the way home, disappointed in myself as there were questions I wanted to ask and I was too afraid to ask them.

I realised that this had to change, that I had to become the carer and voice that my children needed me to be. My daughter was two when she was formally diagnosed with a hearing loss and seven when she was diagnosed ADHD. I needed a big change in my confidence, and strength levels.

I started by accessing online forums; talking to people online started to give me the confidence to get the answers I needed from the people we were dealing with in our daughter’s care. Being on a forum also gave me confidence to talk to people about my experiences and to offer advice to those just starting out on their journey parenting a child with disabilities. 

One big recommendation would be to have a note pad and pen and jot down things that the doctors and specialists say in case you want to research them and keep that notepad in your handbag/coat pocket so that if you think of anything you can then remember to ask at the next appointment. It’s easy to forget long words and to in some cases zone out when you are given news to process, and having to wait weeks for the write up letter to come through so you can remember can sometimes put you on edge.

I had to dig down deep but I decided that I needed to put my children first instead of my own discomfort at talking to people. I became my daughter’s advocate, her voice in a world where adults make nearly every decision for her. My confidence does still waver from time to time but I remember that I am doing it for these four amazing girls who are all looking to me to be their role model, and for the families who are diagnosed daily and are placed in the same position I was. No way am I letting them down.

 

Find out more over on Leanne’s blog