10 More of the Most Positive and Supportive Things Said to Special Needs Parents

We posted about all of the lovely things you shared, which you can see here.

Here are even more of the most positive and supportive things that have been said to special needs parents.

– Remember…her first diagnosis is Sarah.

– Focus on the little things he has achieved not what he can’t do.

– She is exactly the same person she was before the diagnosis, but now you know what you need to do to help her.

– Expect him to do everything, just give him a little extra time.

– Google is not always your friend.

– You are doing a good job.

– Forget milestones, remember happy memories.

– You can do this.

– He will write his own story.

– I am here for you.

If you have any positive messages that have stayed with you over the years, let us know!

Changing Places: My Proudest Achievements

You can read about them here.

During the course of our research we asked Tony Clough MBE what his proudest moment was a campaigner.

He couldn’t narrow it down to just one so we thought we’d tell you about his top 7 picks.

In no particular order:

1. Morrisons

‘I’m choosing Morrisons because it was my first Changing Places toilet in a supermarket. Others have since followed but we still have a long way to go before retailers realise the importance of including bench and hoist equipment as part of their toilet provision.’

2. Montreal Airport

‘This was my first non-EU airport success. Unfortunately I didn’t get over for the official opening. But I know that it is making a massive difference to people with disabilities travelling to and from Montreal.’

3. Road Chef

‘Because it was a bloody long time coming. They got there in the end.’


‘The first non-supermarket retailer to include a toilet with bench and hoist provision. This is my most recent success and I’m confident it’s the start of something big.’

5. Arsenal Football Club

‘The very first Premiership Football ground to install a Changing Places toilet. It was a while ago now but it felt like a major coup at the time.’

6. Lichfield

‘This one has to be on the list because it’s my home town.’

7. England & Wales Cricket Board

‘I am currently working with the ECB and we recently confirmed that Mobiloo – the mobile Changing Places toilet will be available at 9 Champions Trophy Cricket Matches at the Swalec stadium Cardiff and Edgbaston.

Mobiloo will also be at no less than 7 England International fixtures at Lords this Summer Including two 5 day Test matches. As well as the Women’s World Cup Final at Lord’s.’

Tony was awarded an MBE because of his work campaigning for Changing Places and Space to Change toilets.

Tony’s motivation for campaigning is his sister Julie.

These toilets provide changing bench and hoist equipment to meet the toileting needs of people with a wide range of disabilities and medical conditions when away from home.

10 of the Most Positive & Supportive Things Said to Special Needs Parents

This is what you told us –

– Focus on the ‘inchstones’ instead of the ‘milestones’.

– After diagnosis I was freaking out and saying ‘What are we going to do?’ A friend said, ‘What do you mean? You’re already doing it, you’ve been doing it for 8 years!’

– Don’t focus on what he can NOT do, always focus on what he CAN do.

– He can do anything and everything, just not yet – he needs to learn his own way.

– No matter what the doctors say, she is gonna be able to do everything they say she couldn’t.

– Zachariah is Zachariah, not his diagnosis. He will lead his own path and that is OK.

– Celebrate every new thing. Don’t wait for just the big.

– Welcome to the warriors club.

– Take each day at a time, try not to get to ahead of yourself.

– You’re a good mom.

12 Songs Loved by Special Needs Moms

‘Would love to hear what songs are close to people’s hearts and the lyrics that pull at your heartstrings!’

– ‘Everything’ by Michael Buble

I found myself washed away with the lyrics and emotion of the song because it really reflected how I feel about my little superstar.

One particular line that hits a nerve.

‘In this crazy life, through these crazy times, it’s you and it’s you, you make me sing.’

– ‘I’ve got stamina’ by Sia

– ‘Don’t you worry child’ Swedish House Mafia

This song always makes me think of my son.

I’m not even sure I believe in heaven but I have to believe there is a plan for him.

– ‘You are so beautiful’ by Joe Cocker

The lyrics are simple but strong, ‘You’re everything I hoped for, you’re everything I need. You are so beautiful to me.’

-‘Roar’ by Katy Perry

– ‘Godspeed’ by the Dixie Chicks

My song for my son.

I started singing to him the first time he was in the hospital and now it’s just his song.

– ‘You’ve got a friend in me’ Toy Story

– ‘Wires’ by Athlete

Very emotive for any parent who’s had a child in NICU, especially over Christmas.

– ‘I won’t give up’ Jason Mraz

– ‘Dog days are over’ by Florence and the Machine

There’s mixed opinions on the true meaning of this song but for me it’s about finding happiness again.

I first started listening to it while when I got back to running which marked a major milestone for me after my son’s birth.

– ‘Safe and Sound’ by Matthew West

– ‘Upside Down’ by Paloma Faith

Though not specifically applicable to my children exactly but because we don’t quite live our loves the way typical families do but I’m more than ok with that.

What song is close to your heart?

Accessible Toilet Campaigners: 10 Famous Faces

This is especially true when it comes to campaigning for the provision of accessible toilets.

And we don’t just mean toilets that are large enough to accommodate a wheelchair.

We mean toilets that provide two key pieces of equipment – a height adjustable changing bench and an overhead hoist.

Campaigners up and down the country have faced every excuse possible as to why venues CANNOT provide these two key pieces of equipment.

Yet, they don’t stop in their endeavours to ensure that their children’s and relative’s toileting needs are met away from home. Not just benefiting their loved ones but the hundreds of thousands people who need these two vital pieces of equipment.

Campaigning doesn’t always mean taking to the streets with placards and megaphones. For these campaigners it’s more about the effective use of social media, endless emails and phonecalls, shared experiences and photographs lots and lots of photographs.

It’s their tenacity that has resulted in some of the biggest wins in bench and hoist provision in toilets up and down the United Kingdom and for that they should be applauded.

So here’s the low down on the famous faces in the world of accessible toilet campaiging.

1. Sarah Brisidon 

Sarah is based in Southampton and is mum to twins Hadley and Erica.

Hadley has cerebral palsy and through their blog Hadley’s Heroes, Sarah and Hadley campaign for bench and hoist equipment to be included in public toilets as well as recognising venues that already do as a Hadley Hero.

Two of Hadley’s most recent heroes are Longdown Farm and Portsmouth International Port.

Check out the Hadley’s Heroes website or follow them on Facebook.

2. Laura Moore

Laura is better known as Mum on a Mission and you can catch up with her here or follow her on Facebook.

Laura is mum to William who has cerebral palsy and is passionate about the fact that disabled people shouldn’t have their access to the world limited by the barriers non disabled people have put in place.

She has featured on Channel 4’s No Go Britain, the Huffington Post, Daily Mail and Daily Mirror raising awareness of the need for bench and hoist equipment.

At present she is focussing her efforts on Marks and Spencer and Next.

3. Rachel George 

Rachel hit the headlines in 2016 with the remarkable transformation of an existing disabled toilet into a Changing Places toilet in Cornwall Services.

The willingness and speed at which this toilet was provided marked Cornwall Services as a standout example of what can be done.

Rachel blogs about her campaigning and life with her son Adam at Ordinary Hopes.

4. Lorna Fillingham 

Lorna’s Change.org petition has almost 35,000 signatures. Her motivation for campaigning is her daughter Emily-May.

She has focussed her efforts on making the provision of Changing Places toilets mandatory in buildings mentioned in BS 8300:2009. This includes:

a) major transport termini or interchanges, e.g. large railway stations and airports
b) motorway services
c) sport and leisure facilities, including large hotels
d) cultural centres, such as museums, concert halls and art galleries
e) stadia and large auditoria
f) shopping centres and shopmobility centres
g) key buildings within town centres, e.g. town halls, civic centres and main public libraries
h) educational establishments
i) health facilities, such as hospitals, health centres and community practices

Lorna is a familiar face and voice on media and you can catch up with her on Twitter @LornaFillingham

5. Vaila Morrison 

Vaila is passionate about inclusive design. Her experience as special needs mum and as an architect has led Vaila to focus on raising awareness of the need for a better use of space with architects and building planners.

Her aim is that the provision of toilets that include bench and hoist equipment on the agenda at the earliest possible stage in the design stage because architects and planners are fully aware of the need.

You can catch her blog Inclusive Home here.

6. Laura Rutherford 

Laura lives in Scotland and blogs about life with her son Brody who has an undiagnosed genetic condition at Brody GDD and Me.

Laura’s writing has featured on a number of high profile blogs and newpapers including The Mighty, The Huffington Post and Mumsnet. She is a regular contributor to the Firefly Community Blog.

She also runs a campaign calling for retailers to sell nappies suitable for older children.

7. Martin Emery

Martin is the only special needs dad featured in list and is best known for his United Discriminate Campaign which seeks to highlight some of the issues disabled football fans face when trying to get to watch football especially in terms of their disabled toilet provision.

Martin, a lifelong Manchester United fan was motivated to begin his campaign when he was told that he would be unable to sit together with his 3 sons, one of whom, Jordan, is a wheelchair user as there was only space for one personal assistant.

During the 2015/16 season, Old Trafford has seen the introduction of a family area to accommodate wheelchair users and their families, as well as the installation of a Changing Places toilet facility.

Martin Emery won the Social Justice Award in the SMK Campaigner Awards 2016.

8. Samantha Buck

#dontpassthebuck is a familar hastag amongst special needs campaigners and can be attributed to well known campaigner Samantha Buck.

Samantha campaigns on behalf of her son Alfie who has cerebral palsy. Samantha campaigns for inclusion in every aspect of life including toilets, sport, education, and family fun.

You can follow Samantha and Alfie on Facebook. Samantha also has a Change.org petition which you can support here.

9. Karen England

To Pee or Not to Pee is one of the most recent campaigning pages and belongs to special needs mum Karen England who started her campaign after realising that a major redevelopment of her nearest shopping complex did not include a toilet that provided bench and hoist equipment.

Vital equipment to meet the toileting needs of her 13 year old daughter Tamsin when away from home.

10. Tony Clough MBE 

Last but by no means least, Tony who was recognised for his campaigning successes by being awarded an MBE in 2016. Tony’s main motivation for campaigning is his sister Julie and he has had too many successes to mention.

Tony is known for NEVER giving up and telling it how it is.

Are you a campaigner? Get in touch and share your experiences!

Tilgate Park provides, “Space to Change”.

Tilgate Park, situated in Tilgate, South-East Crawley, is already a popular park amongst families.

However, provision of a, “Space to Change” toilet will most definitely bump it up the list of places to be visited by special needs families living locally and visiting the area.

The Space to Change toilet is a retro fit of an existing disabled toilet to provide a bench and hoist – two items essential for children and adults who require this equipment to meet their toileting needs away from home.

The toilet is now available for use.

The refit was carried out by Clos-o-Mat.

Are you planning to visit Tilgate Park shortly? We’d love to hear about your experience!

Visitor Information for Tilgate Park.

Swedish Home-Ware Giant Provides a, “Space to Change”.

This is a fantastic development for special needs families like mine who live in Southampton and those that travel from afar to visit the retailer to stock up on quality homeware, soft furnishing and nifty gadgets.

It feels like a major step forward in our campaign to make bench and hoist standard provision in toilets in everyday places the general public visit.

A step towards understanding that children and adults with toileting needs don’t just go to day centres, community facilities, or public buildings.

That they want to visit everyday places that the rest of us take for granted will provide a toilet that meets our needs.

The Space to Change toilet is a refit of an existing disabled toilet to provide bench and hoist equipment.

It is already renowned for being one of the most family-friendly retailers globally with breastfeeding areas, baby and toddler food provision, nappy packs and childcare to name but a few.

But now the furniture giant has taken a major step towards meeting the needs of special needs families with the addition of a Space to Change toilet.

It’s not likely that we’ll be visiting the Southampton store anytime soon so I spoke briefly to a special needs mum and campaigner Sarah Brisidon who lives nearby. This is what she had to say,

‘This is fantastic news for special needs families and people with disabilities. So much of our lives are planned around toilets.

‘Toilets that include a bench and hoist to meet the toileting needs of my son Hadley who has cerebral palsy.

‘It’s great to know that we can now add this to our list of venues to visit. Who doesn’t love a plate of meatballs or ice-cream?

‘I’m sure we’ll be tempted to buy something even if we didn’t even know we needed it.

‘Well done.’

Store information

5 Reasons To Go Shopping With a Child With Special Needs

Something to be avoided at all costs!

But every day we hear from parents who are loving the opportunity to take their child shopping because of our GoTo Shop trolley.

So here are our 5 reasons why shopping can be fun with kids with special needs when you use a GoTo Shop Trolley.

1. Sensory Experience – the supermarket can provide a great opportunity for a sensory experience. There’s so much going on with lights, colours, sounds, textures – so many opportunities to introduce your child to new sensory stimulations.

It’s a good idea to introduce this new sensory experience slowly with short visits during quieter times before building up to longer visits at busier times.

2. Participation – the GoTo Shop trolley allows you to get your child up close to shelves and counters.

Why not involve them in the task by helping them or encouraging them to choose the items you need or by asking them to make choices between two different items.

You could even get your child to help with directions, as they become more familiar with your local store ask them to point in the direction of the frozen items for example.

3. Face to Face – if your child is a wheelchair user so much of their time is spent facing away from you.

Take a minute to enjoy this 1-2-1 time away from home.

It’s a great opportunity to work on maintaining eye contact, communication and turn taking.

4. Motor Skills – because the GoTo Shop trolley provides great head and lateral support, your child will not have to worry about working hard to sit up straight and support themselves in a standard trolley.

As you are right in front of them this is a great chance to work on some motor skills.

You could encourage your child to hold the shopping list and pen.

Depending on their abilities, they could mark off the items.

Or simply work on holding items smaller than your child is used to or textures that are unfamiliar or strange.

5. Community Involvement – supermarkets are now very much a part of local communities.

They hold family fun days, promotions, charity events –

the GoTo Shop trolley can help your family enjoy these activities!

Families have also reported that as they become regular visitors to their local stores, staff have become more accustomed to understanding their needs and providing additional support.

The GoTo Shop trolley is available in the UK and Ireland in Dunnes Stores, Tesco, Asda, Morrisons and Sainsburys.

Visit the, “Firefly Finder”, to locate your nearest store.

It is worthwhile phoning in advance to check where the GoTo Shop Trolley is stored.

The GoTo Shop is also available for distribution in the US, Canada and Europe.

Contact us to get involved in the campaign!

Confessions of Special Needs Parents

1. On weekends, my daughter often gets her meds and breakfast late, because if she wants to sleep in, there is no way on earth I’m going to get out of bed, let alone risk waking her up!

2. I make sure school does her therapy routines religiously, but I’m a bit lazy about doing them at home.

3. On occasion I’ve been known to use my daughter as an excuse for skipping or leaving early from social events, when in fact, it is just me.

4. We have a pair of AFOs at home that she hasn’t worn in probably 2 months or more…

5. When he got his walking frame – I said I would take it everywhere. It’s only been out of the house twice 🙁

6. There are many times that I now let things slide at home, as I know they’ve focused hard on them at school or therapy.

7. Sometimes it honestly feels so good to just cuddle and watch cartoons with my girl!

8. Our son’s wheelchair has been in the garage all winter.  But guess what?  He is LOVED beyond measure and he knows it.

9. Snuggling with mama and sissys is therapy for all our souls! Real childhood is valuable too.

10. I do sometimes feed my son, even though he’s 8, and even though you have impressed upon me just how much I am undoing all your diligent hard work by doing this.

I do it because it’s quicker when we’re in a hurry trying to get ready for school (and it’s been proven children who have breakfast concentrate better), and sometimes just because I can’t bear to see him leave another meal uneaten rather than struggle with a knife and fork.

11. My son’s power wheelchair sat in the garage all winter – at this rate he’ll never learn to drive it independently..

12. I regularly use my child as an excuse to not go to things when in fact I probably could quite easily

Are you ‘guilty’ of slacking off the house work, turning down invitations, not using equipment or giving therapy a miss?