Whilst the struggle to come to terms with a new dawn begins, an unexpected fight emerges. It is not a fight that can wait until you are in a better frame of mind, it is a fight that has already begun without you even realising it. It is the fight to secure the right support for Anna and, I now come to realise, this will possibly be the biggest and most important fight I will ever make.
The definition of ‘fight’ literally means ‘a situation in which you use a lot of effort to defeat someone or achieve something or to stop something happening’. Anna turns 4 this summer, and so in my case, my ‘fight’ is to ensure that I do all in my power to secure the right educational setting for Anna. I also know that this will be a continuing fight to ensure that Anna gets what she needs, when she needs it.
Since embarking on this journey with Anna, I have continually been told that getting the right help early on is absolutely essential. The strange thing is that it has been virtually impossible to access the right support and we have had numerous cancellations over the course of this last 10 months. We have encountered numerous disinterested people in positions of expert knowledge. It is frustrating, it is not helpful and it has been a very hard slog to get to where we are now. But, I have come to realise that I am in fact, a bit of a warrior. The last 10 months has awoken a sleeping Lagertha inside of me, and that shield maiden is here to stay. In Norse mythology, a shield maiden was a woman who had chosen to fight as a warrior. They were brave and strong and fought equally alongside men.
Anna doesn’t have a voice at the moment, I hope that will change for her in the future, and so I am her voice, for as long as she needs me to be and I will always be her shield maiden.
I have spoken to other parents with children with additional needs, and they all say the same thing; the fact that their child has additional needs and the fight to access the right help has awoken something inside of them that has bought out their fighting spirit. A fighting spirit, that for some of them, they didn’t even know that existed before then.
I have spent many months listening to what experts have said and have to say about Anna. Sifting through paediatrician reports, speech and language reports and educational psychologist reports to try and make sense of what they are saying, of what Anna needs and the best way to deliver it. The thing with the experts these days, I strongly feel, is that nobody wants to commit to sound advice. I’m guessing that is so often because of plausible deniability, but sitting in many appointments over the last 10 months has made me realise that yes, I may not be an expert in speech and language therapy, and I do not have a doctorate in paediatrics, but I am an absolute expert on Anna. I do know what works and what doesn’t work for her. I do know how to get the best out of Anna. And each time I have felt daunted by making a decision about Anna’s future, I remind myself that I can only make those decisions on what Anna’s needs are right now, not what those needs might be in the future, because again and again and again, nobody knows what the future holds. And as I always say, whilst nobody can tell me what Anna will be able to achieve, they also can’t tell me what she won’t be able to achieve.
People may wonder that because Anna isn’t speaking at the moment, or because Anna has autism that Anna’s own future hopes may not be as great as others, but I disagree, how can we possibly know. If Anna wants to aim for the stars then my goodness I’ll help her get there.
I have read a lot over the last 10 months, and I know that with the right intervention early on we can really increase Anna’s future quality of life. But most of all, what Anna needs is love, compassion and understanding. I’m much more direct than I have ever been with what Anna needs, especially to those around me. Not in a horrible way, but as Anna doesn’t have a voice, I voice what I know she is feeling, and I know when she doesn’t like something, I know when she wants someone to give her space, I know when she needs a bit more time to do something. I can help people pick up on the subtle cues (and sometimes not so subtle cues) that Anna gives us. But most of all, I want to tell people that Anna is listening. It’s such a common misconception that because Anna isn’t yet speaking, or that Anna may look like she isn’t listening, that it’s OK to talk about her like she isn’t in the room. I do believe that Anna is taking it all in, busy building her knowledge of the world around her and therefore the last thing I want is for her to be made to feel that her autism is an unwelcome part of her persona.
This makes me wonder what Anna thinks about all the appointments we go to. I hate the thought of her sitting there and listening to what the ‘expert’ is saying. They ask tons of questions and rather than answer in a normal voice, I have started talking in a weird ‘stage whisper’, you know, overly enunciating everything but barely with any sound. (Just like when my 95 year old grandmother was in hospital and she wanted to tell me something about the person in the bed next to her).
It isn’t OK to talk about Anna in front of her like she isn’t there now, and it will never be OK in the future. I read a great article recently by the excellent page ‘Autistic not Weird’. Chris Bonnello who writes the page wrote a wonderful article entitled ‘Five ways to damage autistic children without even realising it’. You can find it here at http://autisticnotweird.com/five-ways-to-damage/. There are so many good things on Chris’ website and Facebook page that I could spend hours telling you all about them, so I’d encourage you to read some for yourself. This one article for me though is the absolute quintessential guide for me to navigate the early years with Anna. I’ve gained so much from it already and I think the difference to other pages is that Chris talks about Autism in such a positive affirming way, that you literally cannot think of it any other way. Yes, Chris recognises the struggles of having autism (he has Asperger Syndrome) but it’s not all doom and gloom and I am eternally grateful for stumbling across Chris and his wonderful take on things.
We have had to make some tough choices on Anna’s education, it’s not been an easy one to make but we have decided to go for a special setting for Anna, one which we know that will ensure that Anna gets the best support hereon in. It does mean that Anna won’t be attending the wonderful school that her big sister goes to, and even though it has been our decision, and I know it is the right one, it has been a difficult one to come to terms with. I longingly think of the school uniform that Anna’s elder sister has grown out of that is currently residing in a suitcase in the loft, and I now realise Anna won’t ever wear any of it. I got a bit sentimental with things like that for a while, but then I remind myself that it’s not about what my hopes are for Anna; every child is so different that children need to tread the path that is right for them. Anna needs the right input in an environment that is conducive to Anna, and right now, I know that’s not mainstream. I don’t know if we’ll get the school that we would like, that’s in the lap of the God’s right now (AKA the local Council). But we can only wait and hope that common sense prevails and that we are awarded the best fit for Anna’s needs.
So whilst I’m waiting for the Council to come to a decision, I’ll make myself busy raising my two little warriors. After all, why raise princesses when you can raise a warrior.
February 1, 2017 at 8:45 pm
Excellent. As always, it’s like I’m looking into a mirror.
She’s going to surprise everyone. Just keep believing in her and what she is capable of. I promise you, the possibilities are limitless.
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