“We searched the world for a miracle, but we found the answer at home”

Guest post from Reza Ataie, a volunteer befriender who runs our Face 2 Face dads’ group in Brighton. He’s sharing his story for Fathers’ Day in support of our Brighton fundraising appeal – we need to raise £120,000 to keep the service running for another three years.

My twins Nikki and Sara, who turned 18 recently, have severe autism and learning difficulties, they also have sleep problems and seizures.

Our children are a handful and a joy. Our life revolves around them, and we can’t imagine not having them for a minute. For our family the glass is always half full, and we’re always happy for the small things.

But when Nikki and Sara were very young, we went through a difficult time.  Even a lot of professionals didn’t know much about autism, and we felt very isolated.

We had a different style of living when the twins were born. I was chief executive of an international company; I travelled a lot and I had a teaching post. I now work in a different role, and I’m very lucky because I can work reduced hours and from home, but my earnings have reduced considerably as a result.

Searching the world for answers

We have videos of Nikki and Sara from their first birthday and they were talking, communicating. But then suddenly, almost overnight, their development turned back.

With the realisation of what was happening to the twins, my wife had to give up her job and eventually I had to stop too. It came to the point where I realised I couldn’t carry on – the sleep deprivation was tremendous.

When they were diagnosed, my wife and I started looking for a miracle. We started doing a lot of research into autism ‘treatment’, and this took hold of our lives.

As a parent, the most difficult thing is to accept and come to terms with your child’s condition. You hope it’s temporary. Autism is a lifelong condition, but we were fighting with every ounce of energy not to accept that.

We travelled a lot – from Russia to America, we went anywhere research was being done.

Finally, when the twins were nearly seven, our fantastic GP called us – he was the only person who knew everything we had been doing. He asked, “Are you tired out? Have you done enough?”

We looked at each other and said “Yes. We’re ready to accept it.”

Getting our lives back together

The first step was to start getting a routine back. We found the right school for the girls, and that was a major turning point. They started settling down and learning in their own ways.

We’ve always done charity work, and I got introduced to a local support group for parents of disabled children. When I started working with them, I realised what a difficult time we’d gone through and what it must still be like for younger parents.

I met Amanda Mortensen, whose daughter Livvy has autism and severe learning difficulties, and she told me about Scope’s Face 2 Face befriending service in Brighton, which she manages.

I did the befriender training course with Scope, and it was fantastic. There were 12 of us, but I was the only dad!

Starting a dads’ group

After the training, Amanda had difficulty finding a dad for me to work with. They tended to be a bit more reserved, and found it difficult to open up.

So I suggested we start a group just for dads. My reasoning was that if it’s difficult to get fathers talking one to one, maybe going to the pub as a group and having a drink would help.

Eight dads showed up for our first meeting in January 2014, and then word spread – we have 32 dads on our contact list now, and we’ve had up to 22 people come to each meeting. A running group has started on Saturdays, and people meet up socially with their families. I’m still amazed about how easy we have found it to talk to each other.

Fathers can feel very isolated – often they feel they can’t talk as freely about their problems. The group gives us a sense of belonging.

Can you support our appeal to keep Brighton’s vital Face 2 Face service running? Find out more about the service and the parents it supports. 

“Shopping with my son and wheelchair in tow is a challenge.”

Claire is a mum to Daniel who is six. Daniel has profound and multiple learning difficulties. Claire has discovered a great solution for taking her son on their weekly food shop and wants everyone to campaign for better trolley access.

As a mum, taking my son to the weekly shop is a really common thing. But, shopping with my son and wheelchair in tow is a challenge.

I really struggle with both the standard and disability trolleys that are available in most supermarkets. Neither provides my son Daniel with the trunk support that he needs. It is also impossible for me to lift him in to a standard trolley. He’s just too heavy and tall now.

This leaves me with very few options. I could do my weekly shopping online, leave Daniel at home while I go shopping, or settle for buying what I can carry as I push his wheelchair.

I am sure that this is a familiar story to many parents of disabled children up and down the country. All of this changed for me when Sainsbury’s rolled out the GoTo Shop trolley to 650 of its larger stores.

The GoTo Shop is an adapted trolley for disabled children that provides extra postural and head support and a secure five-point harness. The GoTo Shop Trolley keeps Daniel safe and secure on our weekly shop.

The GoTo Shop Trolley has been a revelation for us, it makes life so much easier and Daniel actually really enjoys our shopping trips.

I think every family with this a disabled child should have the opportunity to use a GoTo Shop Trolley, this is the reason why I became a GoTo Shop Trolley Champion.

I am very lucky I have two Sainsbury’s stores near to me, but I like having choice. I love collecting my Tesco Clubcard Points, you can’t beat the Asda Mother and Baby Events, Marks and Spencer for little treats and Lidl fruit and veg every time. So you see, I’d like every supermarket in the UK and Ireland to have a GoTo Shop Trolley.

If you’re looking for a supermarket with GoTo Shop Trolleys, you can use the Firefly Finder App.

How to get involved

If like me you’re a parent of a disabled child, who would love to have the option of shopping where and when you want to, then we need to work together to tell every supermarket about the difference a GoTo Shop Trolley can make to our lives.

All you have to do is print out and add your name to this leaflet (PDF) and hand it in to your local supermarket managers.

Let’s raise awareness of the challenges we face in our daily lives as parents of disabled children. By showing how simple solutions can make a huge difference to families like ours we can encourage all our supermarkets to provide GoTo Shop Trolleys.

If you’re not a parent or carer of a disabled child, don’t worry! You can still get involved. Support the #GoToShop Trolley in #EverySupermarket by using our ‘Friends of’ leaflet (PDF).

You can read more about the Firefly Garden GoTo Shop Campaign on their website.