Ch-Ch-Ch- Changes… …

At the risk of banging on about it, I have been thinking a great deal about autism lately. This has been partly coincidence – it keeps sort of jumping out of the woodwork at me – but also relates directly to my son Ben’s transition from school to college and the major adjustments that will mean in both our lives.

I’ve been struggling to put into words the emotions I’m feeling right now as they’re a bit too fresh, iyswim. I received a lovely supportive message from a friend who went through the same process several years ago with her autistic son, contrasting that experience with the experience of waving her neurotypical daughter off to university.

I thought I should share it, partly because it encapsulates so neatly my own fears and partly because it might offer some reassurance for others in similar situations… ben school

Oh I so know how you feel! I remember sitting in ****’s Leaver’s Assembly with tears running down my face. And no matter what anyone says, it is not the same as a neurotypical child leaving, it really isn’t… 

 I have certain pangs about ****** going to university, but they are mitigated by the excitement of seeing her life unfold with all its potential and adventure. As a parent of a child with special needs, I think the positives are very much overshadowed by often crippling fear, and very bittersweet feelings at seeing the contrast with their peers, especially when they maybe all started out together in mainstream primary. I remember feeling overwhelmed by the realisation that this was officially the end of ****’s childhood… and with it, any chance I had to do things ‘better’ or differently, that I had run out of time to do all the things you never quite get round to doing. And when you are the parent of a child with a disability, their childhood is so full of regrets (unjustified and justified, illogical and logical) and the whole grief cycle thing, the depth and complexity of your emotions almost puts this transition up there with getting the diagnosis when they were little, I think…

That final sentence really helped put things into perspective for me. It really does feel that momentous and overwhelming. So I’m feeling less guilty, less of a failure and less self-indulgent about my feelings now, which is good. And I feel empowered to allow myself a bit of space and time for a good ‘wallow’ before putting the brave face back on and just getting on with it. 🙂

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4 thoughts on “Ch-Ch-Ch- Changes… …”

  1. My son is only just three and has only recently been diagnosed and yet this point in his life already terrifies me so I don’t think it’s an alien concept to those of us parents in this situation! Actually, sometimes we need to accept it’s ok to not be ok and just wait until we are again…does that sound silly?!
    Great blog-only just found you after seeing your response to me on twitter yesterday (I’m @a20somethingmum)

    1. Hi Chloe – and thanks for comment. Yes, time around new dx is very unsettling… Give yourself time to adjust to it, and don’t feel guilty for the negative thoughts that creep in – it is a huge adjustment and a huge shift in expectations. Parents who have have the time to make that adjustment sometimes forget that, and so do many HF autistic adults (self included sometimes!). What you’ve said doesn’t sound silly at all, so remember to take your own advice if you find yourself in that position 🙂

      There are a few other posts about autism on the blog – just type autism into the search engine – but it’s not a prime topic, iyswim. That said, if you have any questions on the subject I would be happy to knock out a blog by request!

      David

      1. Thanks David, that’s really kind! Our diagnoses wasn’t unexpected so I’ve been ‘researching’ for a while however most of the stuff available as a resource is either terrifying or evasive isn’t it?! Hoping that actually connecting with other parents in the same situation, like yourself, will actually help to fill in the blanks but mostly I’m guessing it’s just going to be a case of getting used to it. I’m already determined that Josh’s diagnoses won’t define us, and therefore don’t want to base my whole blog about it either….Not quite picked up enough courage to blog about it at all yet…think that’s the next thing!
        Great to read your blog, it’s comforting to know others can have a normal family life despite the diagnoses!
        Nice to meet you! 🙂

      2. Blimey – that was quick! One blog I would point you towards is ‘Chip Therapy’, ‘cos you’re going to have lots of different people telling you about ‘cures’ they’ve heard wonders about: https://lovely2cu.wordpress.com/2012/07/13/chip-therapy-a-cure-for-autism/

        Another thing I’ll quickly mention is NAS ‘Early Bird’ pre-school programme for parent and child: If they have this scheme running in your area it’s well worth trying to access. 🙂

        Will leave you in peace, but meant what i said about specific questions (I was a professional carer working with autistic adults before Ben came along so know the topic from both sides of the fence…)

        😀

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