You may have all been reading many articles and posts about Autism in the last few months. Did you become aware of facts surrounding autism that you never knew before? Has it helped you understand a little more? If the answer is yes, then somewhere my struggle to emphasise the lack of awareness in our community has paid dividends. For that I am extremely grateful to you all. I have lived and breathed autism for the past 18 years. It never leaves you. We live with it each and every day. To be perfectly honest, It doesn’t get any easier, in fact the older she gets the harder it becomes.
Raising awareness of autism is vital to help those living everyday of their lives with it. To know you understand and can truly empathise with what we live through on a daily basis is so important. Sometimes as a parent of an autistic child I just need members of our community to say “I get it, I don’t think you have a child who is spoilt or being a brat in public. I understand that you are not being rude when you can’t always attend the social events I invite you to.
When she was little, I often found myself wondering, what it would be like when she was older. I had absolutely no idea what the future held for either of us. Would she make progress? Would she ever live an independent life?
Would she ever just do one thing that all children her age were doing as standard?
I worried and stressed about these issues every moment. I would dread to imagine how she would cope if I wasn’t there by her side every minute. Who would take care of my princess? Who could possibly do all the things that I do?
I honestly wish that I didn’t have to think about these issues, but over the years I have learnt to control my fears. I have fully accepted that autism is for life. It won’t simply just go away because I want it to.
Autism really does take over your life. There are many can and cant’s to contend with as well as many if’s and but’s. At nearly 19 I’m still reminding her to brush her teeth,
still helping her to get dressed,
still doing her hair.
I’ve rationalised my feelings and emotions. I know and understand this is always gonna be the way of life for us. It doesn’t make it easier or less painful to live with. It still breaks my heart in a way I will never be able to explain. Faith, that maybe one day, just one day, she’ll surprise me. I hope God grants me that day, but above everything else I want her to be happy. My heart melts when she smiles but at the same time it breaks a little too. My little girl will forever live in her little world. Sometimes I think is that such a bad thing? It’s a cruel world, other times I wish she could have made that choice herself.
She’ll never fully understand the world as we see it. She’ll never relate to things in the same ways in which we do. She can’t read or write. She can’t even write her name. Try to imagine that, not being able to write your own name!! We never give it a second thought do we? Things you all take for granted can only be wished by me for her. She’s never chosen her own clothes.
Never told me what she really wants for her birthday.
Never shared a secret.
Never shared a thought.
In fact we’ve never had a proper conversation and how I would love and I mean truly love to have that one conversation? I would give anything.
When she’s ill she can’t tell me what really hurts or even say “my head is spinning”, the simplest thing really but we don’t have that.
If she sleeps in I check to see if she’s still breathing.
When she has a meltdown, I cry with her. My tears only fall where she can’t see them. I have to remain the picture of strength for her. I am her rock. Her stability. If I break, where will that leave her?
I feel my heart break when she looks at me, through misty teary eyes, exhausted from the meltdown. I need my baby to tell me how she is really feeling, but I know she can’t. I hold her to make the pain go away. I do what I feel she needs as a mother. I just hope it’s what her heart truly desires in that moment. You have good days and you have bad days but autism is always there.
I can’t change anything about her and neither would I because you wouldn’t be reading this if she didn’t have autism. It will always be a part of our lives. Long after you’ve read this and got on with your day, I will still be living with the daily outbursts, the meltdowns and the heartbreak this journey brings. There are many heart warming moments too, progress has been made and we shall continue to guide, help and support her in every way we can.
You can help by understanding autism. By raising awareness. This simple little act would change the lives of many other parents, brothers sisters, grandparents living through the autism journey.
I wouldn’t change my journey . This journey has made me the person I am today. Its truly shaped my life. I am who I am because of my daughter. She’s my God given angel and I love her more then words can ever express.
Next time you are walking down the street and you see a child having a melt down, please don’t make any rash assumptions. Everyone has a story. Please try to understand it.