It’s a long way to fall

It's a long way to fall

It will be six years in May. Six years since we sat down with the paediatrician and were told that Poss was likely on the Autistic spectrum. Six years since we started a series of appointments, each more exhausting than the last, to confirm that hunch.

Six years since we shared that diagnosis with her school, our friends, our family. Since we had to learn a new language of parenting, a new way of communicating with our daughter. Since I left work to focus on that all important early intervention.

Six years since we filled out all that paperwork. Learning about terms like ‘deficit model’ and how best to make our child perform the worst. Because the more challenges she has, the more funding she’ll get, we were told time and time again.

Six years since I last had to read those papers. Each word digging into my chest, tightening it, twisting it and drawing a cloud of confusion and fear across my eyes as it detailed all the ways in which my daughter was broken. Six years since I hid those papers away, hoping never to have to look at them again.

Six years and we’ve come so far, and yet, much remains the same. The challenges Poss faced then have evolved, with maturity and time, as they do with most children. Others she’s managed to overcome, with therapy and persistence. Yet, for every one that has fallen away, another sneaks in, subtly undermining our progress and throwing us off balance.

So when the school called last week, not once but twice, we shouldn’t have been surprised.

Words like ‘pear shaped’, ‘intervention’, ‘additional therapy’ and ‘funding review’ were spoken with care in hushed tones; with surprisingly delicate insight into the impact that they were likely to have. Carefully and kindly, walking us through each of the issues, and the plan to address each of them.

Six years and really, these words shouldn’t hurt by now. They certainly shouldn’t be surprising. And yet, the sting is still there. Sure, it’s less than the first time around. Now it’s more like smacking a shinbone that’s already bruised. You know it’s going to hurt, the pain is almost familiar, bearable but painful nonetheless.

We’ll have to pull out those papers again this year. We’ll have to revisit it all over again; the deficit funding model deliberately stripping away the good, highlighting only those areas she needs help in. The meetings, the therapists, the reports. I’m tired just thinking about it.

So as we hold our breath and prepare to jump; I’m hoping that the lessons we’ve learned, the challenges she’s overcome, and the structures and supports we’ve created over the past six years are strong enough to cushion us on the way down.

Six years. It’s a long way to fall.

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  1. When I wrote about the day that my little boy was assessed last year, I called the post ‘To Softer Landings’. It was so hard to watch strangers tease out his weaknesses until he cried and cried out in distress, while they checked off his deficits. I can elate to how you felt back then, and I hope for softer landings for Poss and you and your family now, and for a gentle road ahead. It sounds as though Poss has some great people supporting her xx

  2. You always nail it Renee, your blog is so relatable for any parent with a child on the spectrum. We’ve all been there and those scabs never truly heal. Thinking of you as you giddy-up again, we all want to get off the roundabout some days but it’s a marathon not a sprint. You are an inspiration though, thanks for being the voice of the rest of us! Best wishes.x

  3. holding your hand, Renee xxx

  4. Beautiful, honest and strong words written by an ace chicklet about her even more wonderful daughter. I’ll be your trampoline so try not to worry about the fall. x
    Caro Webster recently posted..The great disappearing act…My Profile

  5. We’re gearing up for another ride on the roundabout as we get ready for high school – I’m guessing that’s the situation you’re in too?The “necessary” fixation on deficits is always hard to grapple with and I hate it with a passion but I’ve come to see that it’s for this single purpose – to access support. Otherwise, I try to make the conversations with school about what he can do, rather than what he can’t. I have to confess that I’m not looking forward to this coming year – we’ve gotten so comfortable in our beautiful little school where everyone looks out for my boy and respects him. I’m not looking forward to having to do it all over again. Good luck Renee – it’s not going to be easy but you, your husband and Poss will come through it x

  6. Good luck hun, I really hope the whole process can be over with as painlessly as possible xx
    Jane @Almost Jane recently posted..Starting School with Stuck On You! {Review and Giveaway}My Profile

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