There She Goes

I just watched the first episode of BBC Four’s There She Goes. This is new series penned by Shaun Pye, a writer on Have I Got News For You, about raising a child with severe learning disabilities. It is based it on his own experience of his daughter who, like Marigold, has a rare chromosome disorder.

The series is classed as a comedy. Some of the reviews referred to it as being “outrageously funny.” And as a result, I watched this wanting to hate it. How dare anyone make light of the very serious experience that is raising a child with a serious learning disability? Plus there was the issue that they had not cast an actress with a learning disability to play the part of Rosie, the child with the rare chromosome disorder, herself. But we’ll come on to that.

The reality was that although parts was so incredibly raw and hard to watch, although I sat there and wept for so much of it, I couldn’t help but like it.

The first scene is dad Simon (played by David Tennant, whom I love, another reason I cannot hate this) attempting to take his daughter Rosie to the park so his wife Emily (played by Jessica Hynes, who I have, for many years, had a girl crush on) can crack on with some work. It’s something that would generally be straightforward with two typically developing children (aside from the usual massive faff to put on coats, shoes etc.) But with Rosie we see an epic meltdown in action as she lies screaming on the pavement, before haring across the road. Dad races after her then hauls her back to the kerb before begging his harried wife to drive them instead. The park turns out to be a two second drive away at the top of the road. They are barely in the car before they all get out again.

I know I have been there.

What resonated especially in this scene was not so much the epic public meltdown (we had a very similar one on the way home from school just now in fact), the tangible stress of dad trying to deal, the mother just desperately wanting twenty minutes to herself to do some work or Rosie’s older brother not getting to go the park for a simple kick round. It was the very awkward interaction when the neighbour walks past and doesn’t quite know how to acknowledge the situation. The poor bloke just kind of stands there staring at Rosie mid meltdown before saying “Aaah” with something akin to fondness / pity, before excusing himself and rapidly moving on.

Again, I know I have been there.

For the rest of the episode, the narrative is split between pregnancy, newborn days and the family today.

The first appointment where the baby measures up small and those first seeds of doubt start to be sewn.

The newborn days, with feeding difficulties and the dawning realisation that this baby is different, that things don’t seem as straightforward as your older child.

The reassurance that is fine, that all babies are different, that they all catch up in the end with these things….

Again, been there.

We see Emily become increasingly frazzled, desperate, exhausted and isolated as she struggles to cope. Simon cuts himself off and uses booze and staying out as a mechanism to deal with the increasing realisation that there is something “wrong”.

Well, luckily I wasn’t there as my husband was as always incredibly supportive and with me on the journey (brownie points there for husband praise – am angling for a lie in this weekend) . But I do recall the moment late at night in the hospital, where, like Emily and Simon, we both prepared each other for the very real possibility that there was a formal diagnosis for our daughter.

Many other aspects were so well portrayed. The struggle around communication. The desperation of the dad to just have a relaxing Saturday evening and placating Rosie with Skips, Hula Hoops and Ipad time just to try and get a night of peace (we prefer chocolate and a Disney film, but each to their own). The patient, devoted older brother who always seems to fall into second place. Not being able to sit down for a meal. All of it rang true, if not a more extreme version of what we go through on a daily basis.

I know many of my rare chromo and SEN community have found this first episode hard to watch. It’s brutally honest and in parts too close to the bone and inappropriate, but mainly guys at the BBC…..

THIS IS NOT A COMEDY!

A drama yes. Some very funny moments. Sure. But classing it as a comedy was a mistake. Calling this a comedy makes me feel like the BBC is calling ours and many other people’s life a comedy. I am sure that wasn’t their intention. But what they are portraying is the life so many of us in the SEN and rare chromo community lead and whilst some of it is funny, a lot of it is not.

Not when it’s day after day after day.

It’s also a shame the part of Rosie herself was not played with an actress with a learning disability. What a coup to REAL inclusion that would have been, to not only say “We are raising awareness and understanding on this very important issue” but to also say “and we are backing the very community it focuses on by supporting disabled talent in the main part.” Shaun Pye has said there was an extensive auditioning process which included both non-disabled and disabled actresses, but after consultation with a lot of professionals (would love to know who – parents are generally the best placed to understand their unique child and their capabilities) they decided it was too much to ask a young person with a learning disability to take on.

But with the right coaching, the right support, I know several parents who believe their children would have been able to take this on.

And what an amazing, positive message that would have been.

Message to the media: disabled talent it out there and ready for action. You just need to work out how to include.

All that said, I love that this series is shining a light on the world of rare chromosome disorders. I hope it will help people to understand some of the challenges, the difficulties that many of our community go through.

But most of all, I really hope that in the rest of the series we get to understand Rosie as a person, not just a rare syndrome, and see some of the beauty that she brings to family life, rather than just the chaos.

I’ll be watching.

If you have a child with a rare chromosome disorder, Unique is the rare chromosome disorder charity which provides support and knowledge. www.rarechromo.org.

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