I read lots of blogs and articles written by parents of disabled children (whose ages are wide ranging); some I can relate to but some I really can’t. But this post isn’t about why I like certain blogs. It’s about how I feel as an individual. Who has a disabled son. And how I never seem to live up to the bloggers who feel joy and gratitude and hope for the lives they live, even when they’ve been dealt a card which more often than not turns a family’s life upside down.
I doubt I’ll be able to explain myself very well but I need to try.
The main reason I write these blog posts is because I need an outlet. I also want others in a similar boat to me to know they are not on their own. I also want to tell the outlet some of what really happens in SEND World. I don’t really decide to write a nice story with a beginning, middle and happy ending. If I were writing about my family’s love of going into town so one child could go in every lift, the other could fleece me dry, and I get to do, well, naff all except push the wheelchair and prevent catastrophes happening, I could probably put some words in about how much I love my kids and how I’d move heaven and earth for them and how fantastic they are in spite of the dysfunctional family we have and that’d be fine. But it’s not what I’m writing about. I’m writing about the realities of SEND. And I can’t see how I can write about joy and love in the same post about SEND. Either I’m being very harsh and envious about parents who seem to be floating around blogland with picnics and smiles, or the truth is they are actually not really that affected by or don’t really get involved with the harsh reality of securing the provision their kids are entitled to by law.
Is that it then?? Parents of kids with SEND who don’t get involved with LA services are happy and joyous. Parents who do, are miserable sods, in a continual cycle of firefighting? I doubt it.
I doubt it’s that simple, (and there’s another group who don’t need to rely on LAs but I’m not including them) but assuming it is, how do the latter group of parents of children with SEND ever hope to be able to live a ‘normal’ life?
You can eventually achieve your own ‘normal’, but when there are endless fights and battles, and seemingly no change, it’s hard to think you are ever going to be the level of ‘normal’ you know and accept. In striving for as normal a life as possible, do the parents who I see as happy and joyous just say ‘Enough’s enough. Our lives ar too short. We need to quit fighting for what our child is entitled to, just for the sake of our sanity and happiness.’ ? Seems possible there could be a point where parents ‘give up’ and get off the ride, and if those parents could just stay on for a little bit longer, we’d have the years of experience, plus the energy and strength of ‘new’ to the journey parents.
That’s all I can say on the subject. There we have it. It’s not my fault my inner Maria von Trapp is being stifled. Amen. And writing this makes me realise why I get so cheesed off when I see ‘inspirational quotes’ being tweeted in relation to SEND reforms etc..
Twitter:
@angryparent: Rec’d son’s EHCP today. It’s in Cantonese.
@happysmileyperson: that’s great!
@angryparent: ffs why is it great. We don’t speak Cantonese!
@happysmileyperson: 🌺💩🌹“Positive anything is better than negative nothing” (Elbert Hubbard)
@angryparent: do you work for a large charity by any chance??!!!
@happysmileyperson: peace and love 💜💜
It's always been done like this 
God I so agree with you – I write about it too xx
From: Its always been done like this Reply-To: It’s always been done like this Date: Sat, 21 May 2016 14:01:46 +0000 To: Duff Borer Subject: [New post] Ramblings.
WordPress.com dianemkay posted: “I read lots of blogs and articles written by parents of disabled children (whose ages are wide ranging); some I can relate to but some I really can’t. But this post isn’t about why I like certain blogs. It’s about how I feel as an individual. Who has a”
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Hi, thanks for your comment. Glad it’s not just me then 🤒 xx
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I absolutely loved this blog post. And its not because I’m seeing positive in the negative. I see the tweets and blogs you do and I sometimes wonder if they are real. Do these people not live with minute by minute fear that I do? How can they cope with it, and how can they survive it? It isn’t the fear of disability that I am talking about because I don’t know what that is like given it is so entangled in the bigger fear I have for how society and life will treat my child.
I suspect some of the blogs are used as a way of re-writing reality because reality is just too hard, and because ‘reality’ is that society’s failure of your child is blamed on you as their mother or father.
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Thanks for your comment. You are so right – my son gets on with things as best he can, but the attitude and actions of wider society are the things that get in his way most, and cause me the most anxiety. Re-writing ‘reality’? You could be right there. I possibly didn’t think of that because if I could do it our family’s reality would be so deliberately boring! 🙂
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Love this. I do think there comes a time when you just have to accept that educational utopia just doesn’t exist for us SEND families and that energies are better focused on preparing for an adulthood which let’s face it are far longer than school years. Pick the good bits from school and try to compensate for the deficits using your own skills. Not ideal but this has become my reality so that I can run around the hills in my wimple….accompanied by smalls dressed in former curtains.
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Thanks for your comment. I had to look up what a ‘wimple’ was though. Suspected it was a naturist thing! 🙂
I’m not so sure what most of us want for our kids throughout their education years can be classed as utopia though. I think decision makers and those we rely on to help are often guilty of making parents believe we are asking for something extraordinary, when really, all most of us want is for our kids to go to school and receive whatever they need to, to be in a position to be able to learn and be happy. Which, let’s face it, is what the majority of children receive without challenge. I know what you mean though, and I admire your honesty. I think it’s inhumane for all these stories of failure to be ignored. Good luck 🙂 (ps does anyone know how she managed to sew up those play clothes so quickly?)
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