Wednesday, 4 September 2013

#ThisIsMyChild. Actually, I have two. These Are My Children.

I was so pleased to read recently that Mumsnet had launched a new campaign to help raise awareness and support for parents of children with additional needs, called This Is My Child.

The idea is to raise awareness and help make life easier for those bringing up children with additional needs - whether that's parents, grandparents, adoptive parents, or carers. Their comment is: 
'We can't all be experts in the many aspects of disability, but we can all make an effort to hold back on the instant judgement, hit the empathy button and consciously try to act in a respectful and constructive way.' 

I think that in order to help others help us parents of children with additional needs more, we need to help inform the general public more. A lot of ignorance is exactly that - a lack of understanding. How can people be expected to understand if we don't tell it how it is? I think that is what has driven me to be so open here and carry on with my blog about our lives - if just one person who will be around Sasha now or in the future reads it, maybe they will have a better understanding of how she is or how best to help her, and seeing her being helped is what makes my life easier.

So This Is My Child. As the title says though, what's important to me is that there are two children here. We have two beautiful girls (yes, I'm biased, I've said that before). Often, siblings are forgotten when it comes to special needs. Not usually by their own parents, for we try even harder to make up for the difficulties they face. The challenges they go through daily are generally unseen and so not appreciated by others outside the home, and they don't generally ask for rewards for their great efforts. They are the unsung heroes and I firmly believe we should give them extra support and rewards.

So, we have Tamsin, aged 8, and Sasha, aged 6. Today was Back To School day and you can read about my feelings on that in my recent post #ThisIsMyChild. Back To School.

Tamsin is a quiet, sensitive, caring kind of girl who is well liked and does well at school but often disappears into the background as she is shy and not very confident. She's an indoors type of girl who loves One Direction and JLS along with her hundreds of soft toys, and she has enjoyed after school activities such as gym, swimming, ballet, jazz, cookery, art, French, netball and rounders at different times. She gave football a go but has always been a girlie girl so I wasn't overly surprised when she asked to drop it! She struggles with handwriting, and we found out recently that she has mild hypermobility which makes it difficult for her to hold the pencil properly. I'd love to give her a big boost of confidence somehow (I often tell her how fab she is of course!) and to be able to help her improve her handwriting which she is demotivated about. With Tamsin, you would not need to approach her or react to her in any way different than you would any other 'average' (some refer to this as NT or NeuroTypical) child.

Sasha is a loud, energetic, curious kind of girl who is diagnosed with autism. We believe she has a type of autism called PDA (Pathological Demand Avoidance) which you can read lot more about on this fabulous resource page Sasha is an outdoors type of girl who loves her family and friends and her one soft toy, Terry the Turtle, who goes most places with us. She has tried a couple of after school clubs like ballet and swimming but does not find it easy to follow instructions and so the only activity she has maintained is Little Gym, probably because the team have always been fab with her and it's not too structured. Sasha's speech has always been a little delayed - right now the NHS speech team (if you can call it that, but don't get me started) says her speech expression and understanding is about on a par with her peers, but her speech sounds are delayed. I'm not sure I fully agree with that, but she's not far off them I guess. Her favourite word at the moment is 'boring', but she doesn't use it in a way that her peers would; she doesn't fully understand its meaning. She uses it any time she feels she can't do anything, for any reason - so that could be just because she finds it difficult, not because she's not enjoying it. She will also often say 'Don't tell me', even if you are asking her a question - what she means by that is that she is a bit overloaded and can't think of what her answer should be. So it's best to only talk to Sasha when she is happy to be talked to, and to keep the conversation short and interesting to her....

Sasha is very easy going and happy when things are being done which suit her. That sounds as if she never does anything she doesn't like... well to be honest, she doesn't very often! We've learnt to live with that as constant meltdowns would be unbearable. I always struggle to explain Sasha's condition to other people, as I fully realise that it sounds as if she is just a naughty child who wants her own way all the time. It's not like that, and I can only really tell the difference as we are also bringing up a girl who does not have autism and the need to be in control - of course Tamsin would love control like Sasha has, but there's no need for her and so we parent her in the 'normal' way. We understand the difference because we spend so much time with both of them of course, and there's a lot of 'managing' done around here to keep the household on an even (ish!) keel.
I'm so relieved the first day Back To School was a happy one for both of them. Do you ever wonder what is going on behind the smiles though?

So how can you help us, or other families with additional needs children? By listening and reading (which if you've got this far, you already have, so thank you!), asking questions any time, maybe just remembering that we live a roller coaster life full of big ups and downs, and by sharing our story with others - Facebook, Tweet, Social Media it away pretty please!