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Tuesday, 20 May 2014

Additional Parenting

I was talking yesterday about what the difference might be between a parent/carer and a parent whose child hasn't any particular additional needs.

There are people out there who are parent/carers to children with severe disabilities of mobility and neurology, which I can't begin to imagine and they are tired and stressed and completely put upon and I pray they are getting enough support. Up all night, administering to medical and continence needs, those parents are doing an amazing and really hard job. I'm not that. I don't have it that hard, I am supremely lucky that my child has SLI and nothing more severe. A lot of children with SLI might have chromosonal conditions that affect them. We have some behaviour issues but no physical or mobility constraints and as I say, we are supremely lucky to have such an able and character-ful person in our lives. But that doesn't mean that SLI doesn't affect all areas of her life, because it does.

There are other parent/carers who are probably a bit like me, that have fought for sen or support and have a generally managed time as long as support and basic needs are met, routines are in place and you can find some flexible work for yourself (which is not easy and the main reason why I have decided to stick to working for myself for the time being.) You're unlikely to rule the world like you thought you would, as you have the extras to deal with. It is hard work still, and in a way that even we don't realise sometimes.

To explain - for some parent/carers it might be dealing with social anxiety, with a child who can't cope with plans changing or putting on socks. Sensory disorders/sensitivity. Routines. For me it encompasses being a full time teacher, carer, advocate and translator, which is something you don't realise you're doing until other people start meeting your child and you find yourself repeating their sentences.  It is sometimes about having to detach the parent's head and add on a carer's head. It's not full on, it's middling tasks but important ones and ones which aren't covered by anyone else if you don't work at it.

I've thought of the times I have to detach and do the extras....

Trying to explain the difference between 'it not suitable you' and 'it doesn't suit you' whilst both are being aimed at your dress.

Knowing that 'custard' might actually mean 'gravy'. Both are in the same word category of 'sauce' but it's necessary to remodel 'I had chicken with custard' to gravy, just in case she asks for it when I'm not there, and gets actual custard on her chicken one day. (Repeat it three times and picture the colour, gravy, gravy, gravy)

Understanding that they aren't going to be as independent of you in the same way that a child who is able to operate in mainstream are. But that doesn't mean you don't have to try to help them to be. Empowering

Patience. Endless, endless patience. And repetition. And patience.

Being assertive not aggressive with SENCOs, LAs, SLTs and any other abbreviation you can think of.

And many more!

Does this ring a bell with other parent/carers?  What are your added extras?

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