My post today is not one I ever imagined writing. It is a hard one for me to write for many reasons. Today I am not writing about Isaac, today I am writing about Alice.
This is Alice, Isaacs older sister. Alice is 10. Alice has always been my happy go lucky, chilled out little lady. She has always given the impression that she copes well with everything. She excels at school and puts 110% into everything she does. Over that last year or so I have noticed things don't seem quite right with Alice. She has not seemed to be her happy self. I had been putting it down to the fact that Alice has a lot to cope with in her life, she sees all of Isaacs hard times and deals with them. However, just recently there has been a nag at the back of my mind, for a long while I have ignored it but a few months ago there was a problem at school that escalated and got completely out of hand. I went for a meeting at school and was asked those words I dreaded to hear. "Do you think that Alice may be on the autistic spectrum?" I wasn't surprised that I was asked this but it still wasn't a question I was prepared for. All the thoughts were spinning around in my head and none of them were making any sense.
Let me try and explain. When you have a child who is diagnosed with autism, you see autism everywhere. It is almost like you have an 'auty radar'. You can pick out the child in a playground who you see traits in, you look at the child at a party who is separate from the group and wonder if there is something there. Since having Isaac I have seen traits in a lot of people, but that is exactly what they are 'traits'. From people who like things done a certain way to someone who dislikes being in a crowded place. This does not mean that I see the whole world as autistic, I think for me what it means is that I am trying to 'normalize' some of Isaacs behaviour.
Alice is 10 and exceptionally bright for her age. For those of you who understand levels, Alice is in year 5 and working at level 6, that is how bright she is. However, her ability to deal with social situations is really starting to stand out. She constantly thinks that people are looking at her, she hates to be the centre of attention and, at times she can be very socially inappropriate. She has not yet developed the ability to realise that just because we think something, doesn't mean we have to say it.
Whilst we could argue that it could be that Alice is just shy, having spoken to her school I agree with them. The alarm bells really rang for me when I was asking her what had happened, she walked out of the room shaking her head and looking at the floor. Once she had calmed down she told me that when she feels like that she can't speak. She said that all the words are in her head but she physically can't speak, she desperately wants the words to come out, but they don't. She doesn't speak to friends if she sees them outside of school, if they say hello to her in the park or in town she will cling on to me and hide her face.
Once school had raised the possibility that Alice may also be on the spectrum I did what I do best and researched. I noticed from researching that a lot of girls are not diagnosed until late into their teens because they present very differently to boys. They are more socially aware and this masks a lot of the symptoms. On reading the signs and the red flags for girls, I realised just how many there were for Alice. Alice could read prior to starting school ( I think they called it hyperlexia), She gravitates naturally towards older girls, this is apparently so that she can read their social cues. Girls may appear to be natural leaders to start with but as they get older they will be seen as controlling. All these things described my little girl to a tee. Then I thought about other things. Alice likes routine, she doesn't like change. She doesn't resist change in the same way that her brother does, but she doesn't cope very well with it either. Alice has a wardrobe full of lovely clothes but will wear the same 2-3 outfits all the time, she has clothes in her wardrobe that she never wears. She hates having new clothes. Her hair has to be a certain way and she will no longer let me do it for her.
So where do we go from here? Well at the moment I am stuck well and truly in the ostrich position. I am not ready to accept or deal with this at the moment. Whilst in my heart of hearts I know that I need to get my head round it, and quickly, I can't. I have had a few people tell me that it will all be fine, that I can do this, I've got Isaac so I know what I'm doing, it doesn't change who she is etc etc. The problem that I am having is that I don't want to do this. I don't want to go through the appointments, the assessments, the "You're seeing things that aren't there", the "It's probably because of her brother." I don't want to do it again, but most of all, I don't want to admit that it may be true. I don't want my little girl to be on the spectrum. I know I'm not doing her any favours by ignoring it, but equally I'm not sure it'll do any good for her by seeking an assessment or diagnosis. I'm in a place I never imagined and it is harder than you could believe. You would think that having already gone through all this with Isaac it would be easier, but it's not. You see, with Isaac I always knew that something wasn't as it should be, with Isaac it was not a surprise at all, most of all, with Isaac I knew almost from birth that there was something not right. With Alice, I have had 10 years of having my little girl. All the hopes and dreams etc, it's hard to explain, because whilst it doesn't change who she is, it changes who I thought she was. I'm not even sure that that makes sense but I know what I mean.
I honestly don't know what to do for the best. Alice is a bright girl and I'm certain that fairly soon she will start to realise that she is different (if she hasn't already), equally, she doesn't want to stand out from the crowd and in seeking assessment etc this will automatically make her stand out. The problem is that is just over a year she will be going to secondary school and her primary (which is a small village school) have agreed that unless things are put into place now to help her, she will get lost in a large secondary school. I guess I have some serious thinking to do and pull my head from being buried deep in that sand.
This is a post I have tried to write several times, but have never managed. It has just been too hard, I guess the fact that I have managed to write and publish it means I am making slow progress on the road to acceptance. I've still got a long way to go though. Alices IEP came home for me to read and sign before the school holidays and I still haven't managed to take it out of the envelope. The day it came home it struck me how things change. That same day Isaacs report arrived home with him, I was crying tears of joy over his achievements and at how well he is doing, yet I was crying tears of heartbreak at the envelope containing the IEP. I'm used to it being the other way round.
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