Please come along on Sunday and give your support to these Autism Charities.
Below is part of Ambers Story, and why I think this event is really worthwhile. (Kenneth Ingram)
Amber has two anniversaries this month, her 7th birthday and 5 years diagnosed. To us both are equally worth a note, why? Well it was 5 years ago we had that answer, the reason for how she was. Although scary there’s a massive exhale of breath, relief that there’s now something to work with and get help for. I was fine about labels being attached to her, Autism, Autistic, Developmentally Delayed, Learning Disability. To me she was still herself, it didn’t re write anything that had gone before, but it could path out her future..in a good way. Although some don’t like those labels and don’t find it necessary to put them out there, I find some comfort in them.
If someone asks me why she does or doesn’t do something then I have an answer. Before I didn’t, I probably appeared to not have a clue about my own child, I mean what mother doesn’t get what’s going on right? I’m pro people being themselves, if those labels are part of what makes Amber her, then I’m not going to start hiding it or worrying about reactions because, I don’t want her to have to feel she should. I want her to know and understand herself in her adult life, this is how she will get around those sticky points that will continue to niggle and bother her in adult life.
In the past 5 years I’ve learnt a lot, about her condition, about my parenting, about her brothers, about overcoming what seems impossible.
Amber is most definitely more than her diagnosis, it’s part of her yes, but not her whole self. We get flashes every now and then of her, not watered down by mimicking or acting something out she’s seen before, she breaks out of patterned behaviour and gives us the tiniest peek of what she thinks or how she sees things. Watching a video and describing Miley Cyrus as “hurt” rather than crying, telling Paul his head is “oh my goodness so silly your head!” When he pretends to bang it and makes her laugh. Mumbling “love you” for the first time when she’s nodding off on my knee. These happenings are few but beautiful.
Being a mum to Amber is a whole new experience for me. She is the youngest so I was a mum before, but I had to whack that reset button and start from scratch. Our relationship for the first couple of years was basic, when I say that I mean she was only looking for caregiving from me, she didn’t show interested in my silly faces or baby talk or peek a boo games. When she started singing it took a long while for her to appreciate me singing back to her and no not cos my voice was terrible! Ha! I didn’t know to start with about her interaction and social difficulties they also applied to me, being her mum made no difference. It never really affected our bond though, as she was a baby that never cried I developed some kind of super mum powers and tuned into small things so I knew when she needed something….that actually sounds kinda spooky!
Our family was fractured after diagnosis. Amber’s needs became priority as we were overwhelmed with techniques and advice. Activities with her brothers became separate as her therapies needed 1 to 1 attention. Looking back I think this was unfair on them somewhat even though necessary for Amber. A few more balls got thrown in the juggling act unexpectedly for them at least. We’ve got to a place now were we have become inclusive if you like. They play together, she spends time with Cameron and some with Halen. We’ve got the hang of sharing (just about) and they both have things they’ll do for her. Cameron lets her use his pens, Halen gets her ice cream. Halen gets a lot of aggression from her at times but he still continues to get that ice cream for her out of his money tin. They picked up certain techniques too and will use them, they are closer than ever.
Amber has smashed her way through a lot of what her diagnosis presumed. Her speech came through, she reads very well, writes beautifully, does some independent work at school, listens and carries out some instructions from various people, recognises emotions and has a good grasp of what is good and not so good behaviours…especially when acted out by someone else! These things are of course a given for most of us, but she’s had to learn a little longer, try a lot harder and push through barriers even I can’t comprehend fully. More importantly, right now she’s happy and so are her brothers. I’m simply proud, extremely proud of all of them.
All Photos are used with the kind Permission of Karl Wilson.