6 Top Tips for Maintaining Good Mental Health

Here’s what they had to say:

1. Exercise

Without regular exercise I know that my mental health would suffer.

Periods of my life when I didn’t make time for exercise are some of my lowest.

It’s not just any exercise – I need to get my heart rate up, feel a sweat and be out of breath.

That doesn’t mean I have to go for a 60-minute run or hit the gym for a long session.

A 15 minute HIIT session, some skipping in the back garden or even a quick fast/slow run up and down my street makes the difference.

2. Medication

It took me a long time to accept that I needed medication to help me with my mental health.

I refused the prescription on a number of occasions.

It was only when a friend said, ‘Now if you had a heart condition or an infection you wouldn’t hesitate to take the medication prescribed.’

She was right.

It took a number of tries to find a medication that worked and only a short time to see a massive difference.

3. Cut Down on the Alcohol

It was a long time before I realised that I had developed a bad relationship with alcohol following my child’s diagnosis.

It sort of crept up on me.

Although I was never drunk, I realised that I began to crave or even rely on my evening glass of wine to help me relax or wind down after a chaotic day.

Weekend wine, became everyday wine and one became two glasses – I was not on a good path.

Now I very rarely drink and have taken up some hobbies instead.

I’ve got back in to sewing which was my pre-children passion.

4. Cognitive Behavioural Therapy

I was very lucky that I was able to access CBT through the NHS after a fairly short wait. I know others aren’t so fortunate.

My therapist really helped me take a step back and re-evaluate my situation and make better decisions. So for example I can now say no, it’s not my role to be everything to everyone.

5. Diet

So simple but so effective.

I used to forget to eat all the time.

So busy sorting meds out, rushing to appointments, fitting in therapy, picking up prescriptions.

Then I’d find myself absolutely starving so I’d grab the nearest bar of chocolate or fizzy drinks.

Sugar high, followed by sugar slump.

I knew this couldn’t continue. I wasn’t setting my kids a good example for a start.

At particularly stressful times in life, I find even the smallest things difficult to cope with including PMT.

I never realised how following a good healthy diet would not just help my body but also my mind.

Having a good diet has made a massive difference.

6. Friends & Family

Being around people has always been important to me.

I’m part of a large family.

Following my child’s diagnosis.

I did cut myself off from others.

I didn’t know how to answer their questions.

I didn’t always want to see their typically developing children or hear about their ‘normal’ lives.

The downside of this was the loneliness which had a major impact on my mental health especially as I was such a social person.

I took it step by step – starting going to some family occasions or friends get togethers for very short periods.

I’d pop in for 30 minutes eventually building it up until now I’m glad of the support of those closest to me.

What are your top tips for maintaining good mental health?

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.

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?

Lidl trialling the GoTo Shop Trolley in the UK

Will Lidl be the next big retailer to roll-out the GoTo Shop trolley?

Tesco, Asda, Sainsbury, Dunnes Stores and Morrison’s are already making shopping trips easier and more enjoyable for special needs families living in the UK.

This latest trial in one store could see Lidl be the next big retailer to really make a difference for special needs families.

The GoTo Shop trolley is an adapted trolley that provides adjustable lateral and head support together with a five point harness and an open front for easier transfers from wheelchair, car seat or special needs buggy to trolley.

If you’d like to see Lidl ‘roll-out’ the GoTo Shop trolley across all its stores then download the campaign leaflet and hand it in to your local store.

Did you know? 

The GoTo Shop is now available in the United States! Join our US campaign by downloading this leaflet!