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Writer Shaun Pye on exploring issues that affect many parents of disabled children, for BBC’s There She Goes

Shaun Pye is the writer of BBC4’s ‘There She Goes’, and is the dad of a 12-year-old girl with a chromosomal disorder.

In this blog, Shaun writes about exploring issues that affect many parents of disabled children, like him – and why now is the time to join our campaign to make life better for disabled children and their families.

Writing a personal story

In the weeks leading up to the broadcast of There She Goes I was extremely nervous. All TV writers worry about the response from friends, critics and the dreaded internet. But I was particularly worried about what the families of children with learning disabilities would think. I had always emphasised that this was a very personal story, about my family’s experiences with my daughter, and didn’t try to tell any wider story about living with disability. But still – I was terrified of how it would go down, all the same!

BBC4's 'There She Goes'

I didn’t need to worry. We had a screening for a wide range of charities, including Scope, which drew a very positive response. Then in the days after episode 1 went out – wow. The number of people who contacted me, or the production company, or the BBC, or took to social media. Overwhelmingly, support was phenomenal (so huge we haven’t had time yet to thank each person individually).

Almost universally it was from parents or siblings of children, although many now adults, with some form of disability. The message repeated over and over was “finally, a programme on television that tries to show what my life has been like”. Many said that other programmes had dealt with the subject matter but often portrayed the parents as saints dealing with a terrible burden, or portrayed learning disability and autism as some sort of superpower to be marvelled at. It’s neither – it’s something that’s amazing, boring, terrifying, funny, sad, uplifting … did I say boring already?

Some people commented on specifics,  the rituals around dealing with finding hidden poo, the bruises up the arm, the ordeal of getting their child or sibling to go for a walk. But many also talked about the broader issues in the programme, a lot of which chime with Scope’s current campaign.

Two hands high five eachother, and text reads: Now is the time to make life for disabled children and their families better. Scope = Equality for disabled people

Now is the Time

A key statistic is that 41 per cent of parents of disabled children say they were offered no emotional support during or after their child’s diagnosis. I’d say our parents and extended families tried to offer support. However, the theme of episode 1 is that a broad range of lovely people just wanted us to think that everything was okay. And it really wasn’t. This meant we had a lack of the support that we really needed.

Another key statistic is that 25 per cent of parents of disabled children feel more isolated at this time. Without question this happened to us. My wife didn’t want people telling her “nothing is wrong” because she knew there was, and if nothing was wrong with her daughter then by extension something must have been wrong with her.

An illustration of a parent and child, with text that reads: One in four parents of disabled children aged 0-5 became more isolated as a result of their child's diagnosis. Scope = Equality for disabled people

When it became apparent to everyone something was wrong, the last thing my wife wanted to do was see cute, bouncing, “normal” children at Tumbletots and NCT get togethers. She didn’t want the judgement of others, well meaning or not. She withdrew from social interaction. I just drank too much. It’s a source of great shame obviously but it is the truth.

One source of regret I have is that I didn’t try and seek out support earlier, from the likes of Scope and the other charities specialising in this field. I think it was from a sense of pride and a feeling that I would be judged? These weren’t rational and I wish I could tell my younger self just to go and get all the help I could.

Raising awareness

If in some small way ‘There She Goes’ can help raise awareness of these issues, promote a bit more understanding of learning disability and help improve the support networks people have access to, and encourage them to access them then, I’m very pleased.

As I said, this programme only ever tried to tell my story. It was a decision taken wholly because that would give the programme authenticity. But beyond that I didn’t think I had the right to try and import other families’ experiences. And anyway, I thought that my daughter was unique.

She is unique. She’s amazing. But a lot of our experiences it turns out are the same. My family have been truly blown away by the response of parents. It’s good to know you’re not alone.

Be a Disability Gamechanger and sign our petition calling for a new Minister for Disabled Children and Families.

Looking after working and service dogs in the extreme heat

Amit Patel is a speaker for Guide Dogs. He’s guided by Kika – who has become *very* popular on social media.

Unfortunately, Kika’s been having a few problems recently, coping with the hot weather – so Amit writes about his experiences below, and adds some tips for keeping your dog cool in the summer heat.

We can’t control the weather

As a Guide Dog owner, I know full well that the weather is one of those things that you cannot control and can really throw your routine out of the window. Extreme weather is challenging, whether it’s really hot or really cold, it will have an impact on your dog and how they work. But you can prepare for it.

In winter, there is the constant worry of grit getting in a dogs paws (the salt can burn them) and snow covering the ground means that a Guide Dog cannot tell the difference between the road and the pavement or anything hidden underneath in the snow. And let’s not even talk about the black ice!

The past few weeks however have seen the opposite extreme – with temperatures hitting over 30 degrees in the city and trains and tubes getting significantly hotter than that, I’ve had to make some tough decisions to ensure Kika’s well-being.

A Labrador with guide dog harness sitting in the aisle of a underground train
Kika the guide dog rides on public transport

It’s hard to keep cool

Kika is a beautiful white Labrador, but that comes with a very thick fur coat, which, coupled with her leather harness, means that she gets warm quickly. As if the outside temperature wasn’t hot enough, the pavements also heat up and can burn a dogs paws easily.

I rely on Kika to keep me safe, but if she’s hot and bothered, or struggling in the heat, she may find it hard to concentrate and as a consequence, won’t work as well. I’ve also found that like any of us, if she’s made to do something that she doesn’t like or doesn’t feel comfortable doing, like working when its uncomfortably hot, she’s less likely to want to do it again in the future.

I’m dependent on Kika to be able to get out and about in London but recently I’ve had to adjust my routine to avoid peak time trains. I’ve been going in extra early when its cool and coming back early before the evening peak. I’ve also taken alternative routes which have been unfamiliar and which require assistance – this makes journeys longer than usual but can also cause anxiety due to the change in routine. I’ve consciously been taking things slower with plenty of breaks for us both throughout a journey because of all this.

In our experience, extreme weather exacerbates issues on public transport too. Somehow lots of trains have been delayed or cancelled, with more last minute platform alterations than usual recently. Some days it’s been too hot to even attempt the trains during the daytime so I’ve had to take taxis home – adding extra time and expense.

Father with his guide dog and son standing outside number 10 Downing Street
Amit, his son, and Kika, outside number 10!

We still have to work

Like most people, we have to get to work regardless of the weather. I’m fortunate that my clients have been very understanding, I’ve managed to juggle meetings and work from home much more which has meant that Kika hasn’t had to work as much in the heat.

For the days that we have had to travel into London, we start our day even earlier with a good groom for Kika – this helps remove the shed hair, allowing the skin to breathe and trapping less heat in the coat. Kika has a very pink nose which is prone to sunburn, so I also apply a little sun cream (dog safe, of course) to her nose. The challenging part of this is that she always tries to lick it off! I also make sure Kika’s had plenty of cold water before leaving and I carry ice cubes in her water bottle so that it stays cool for as long as possible.

I’ve found that most restaurants and cafes are more than understanding given the extreme heat and will always provide water and ice for your dog if you ask for it. Stopping somewhere so that Kika can cool down is a great excuse for me to also take a break and have a cold drink.

Some people ask why I don’t just leave Kika at home? After all, I have a white cane and I’m trained to use it! But it’s not as simple as that. Kika isn’t a pet, she’s my Guide Dog and she’s been with me 24/7 since we qualified together almost 3 years ago. As she’s a working dog, she comes with me everywhere – to work, restaurants, the hospital and even holidays abroad. She’s never been left home alone for this very reason.

Kika - the Golden Labrador sat between seats n a train panting
Kika on public transport

Amit’s top tips for keeping your working dog cool in the heat:

  • Avoid working your dog unless you absolutely have to – can you work from home or get other assistance to help you get to work, e.g. a taxi or support worker
  • Carry plenty of water for you and your dog
  • Go early when its cooler, come back pre rush – as trains and tubes are considerably warmer
  • Groom your dog more frequently to remove shed hairs which stops heat being trapped in their coats
  • Sun cream on the dogs nose
  • Paddling pool! Great for cooling down kids as well as dogs
  • Ice cubes – both in water but they also make great treats in this heat
  • If you feel that your dog is overheating or struggling to cool down, then hose them down with cool water or apply a cold wet towel to their underbelly and paws. If in doubt, please call your vet.

You can follow Kika and Amit on Twitter – we highly recommend that you do.