On Sunday we delighted in the annual Singing Hands Summer Show which is always an absolute highlight of our family’s year. I have written blogs in the past about the benefits of Makaton and other communication aids for Jenson and for other children who have communication and learning difficulties.

But Singing Hands embraces so much more than just signing and singing. When you attend a Singing Hands concert, you are swept up into a bubble of wonder, magic and warmth. The feelings of belonging, acceptance, and mutual joy in a room full of similar families, is simply mesmerising.

Suzanne and Tracy are the founders and performers of Singing Hands, and over the past 23 years have been tirelessly delivering a platform for families of children with additional needs to come together through music.

They sound and look as fabulous as they did two decades ago, and their passion shows no sign of waning.

The ladies’ beautiful harmonious tones are just a small part of what makes this pair exceptional individuals. Through their own first-hand experiences of having young children with additional needs, they identified an opportunity to develop a platform of bringing music and signing to other families who may be experiencing a similar journey.

Suzanne and Tracy have remained at the epicentre of Singing Hands throughout its long lifespan, tirelessly developing live shows and workshops, CDs, DVDs, books and educational resources. They are now the icons of thousands of households across the UK and beyond; their smiling faces and melodic tones appear throughout homes, televisions, YouTube and Spotify daily!

At a Singing Hands show, you can expect familiar and engaging songs, bright costumes and props, surprise guests, playful characterisation, sensory accessories, immersive and interactive touches like bubbles and snow, and most importantly, the opportunity to express yourself to your heart’s desire. You can meet and chat to the crew, and have your photo taken with the iconic ladies, who impressively remember and recall your names!

What a total breath of fresh air it is to be welcomed into a fold of acceptance and mutual understanding, where our children can exhibit their inner emotions with no fear of judgement.

Knowing that those around you will encourage and embrace you and your child.

Singing Hands has not only given us a host of wonderful family occasions to enjoy, but also a platform to meet up with our cherished Chromosome 18 family on a regular basis. Spread across the country, we rarely get together with our small community, but we have developed a tradition to meet up each summer and Christmas. The appeal of Singing Hands has facilitated this for us, and no doubt for many other groups of families across the country.

And let’s not forget the siblings!

You might expect Coby to prefer to be out on the football pitch or doing a similar six-year old’s chosen activity, but he was equally rapturous throughout yesterday’s show as his big brother. Joyously jumping around to the music and signing along, he was engaged in the production and was over the moon to be reunited with his buddy Charlie, another young sibling.

Like so many families, we struggle to find events that the four of us can attend that works for everyone. While we do try to visit the theatre, panto and family shows, the societal expectation of how children should behave is something that is omnipresent in any mainstream setting.

There is an expectation to remain silent, and laugh/clap/interact at prescribed moments only, that can cause parents huge anxiety, and sometimes embarrassment. Even just the act of queuing, access and toilets, or overwhelming crowds or noise, can be too much to cope with in a mainstream environment. Singing Hands goes above and beyond to address and eliminate such issues.

Tracy and Suzanne with all their humility, probably have no idea how much of a colossal effect they have made on so many people. Thank you, Singing Hands, we cannot wait until the Christmas show!

Recently, we took the Dude off to Birmingham for a weekend. It was meant to be a treat for him, a chance to spend precious time together after a recent hospitalisation and him having to miss out on a few things he’d been looking forward to as a result.

We booked into a Holiday Inn so we could spend two days in the city visiting attractions that he would enjoy; here I absolutely have to say that the hotel and its staff could not have been more amazing. Having called ahead so they were aware that our young man is a full-time wheelchair user, our room was set out to maximise space so we could easily move him around. There was no issue for them to store his blended meals that we brought with us in their freezer and for them to reheat them when we required. Even when other guests were rather noisy shall we say (not excessively), the staff made sure our boy was ok and not overwhelmed.

Safe to say, such care shown to our son made an impression.

Despite living in Staffordshire, this was the first time we had actually visited Birmingham city itself with the Dude since he was tiny… to say it was a shock is an understatement. Accessible it is not. A lack of thought in the planning processes is painfully apparent, as there are steps almost everywhere, disabled access routes are not always clearly signposted and often require you to go far out of your way because no-one thought to put in a ramp for example.

A lift, specifically for disabled access by the canal, is apparently switched off ‘when not in use’… hardly helpful when you’re in a wheelchair and need to get to the upper levels (there is an intercom that needs pressing, which is out of reach of some wheelchair users). The final straw was that while we were there the Great Birmingham Run was taking place… not an issue in itself, except that the route blocked access to every major carpark in the city. In turn, blocking access to the vast majority of accessible spaces. Let’s face facts here, there are already disproportionately fewer blue badge designated spaces than there are standard spaces. Blocking access to every single major carpark so that there is nowhere safe to help a disabled passenger disembark?

Not a good look, Birmingham. Not a good look at all.

The biggest frustration faced by families like mine is that the majority of the issues we face in accessing public spaces are often easy to resolve with a little bit of forethought and consideration. The issue with the carparks not being accessible due to road closures could easily have been avoided if communication had been better and diversions clearly in place.

Ramps are usable by everyone, but not everyone can use steps. It’s easy to forget if this isn’t your life on a daily basis that disabled children will grow into disabled adults – however those individuals are very often just as capable of living full and active lives as anyone else. They want to be able to work and travel around their own cities and towns without being faced with obstacles that are really very simple to factor out with good planning and a bit of consideration. Our experience at the Holiday Inn shows how easy it is to make life easier for disabled people, their actions made us ALL feel valued. The same cannot be said however for the City of Birmingham.

Dear Dad

I try to remember to tell you that I love you every day, but on Father’s Day, I didn’t just want to tell you, I wanted to tell the whole world.

I think I ditched ‘Daddy’ and started calling you Dad about two years’ ago; Mum says this is quite symbolic of how I’ve grown up quicker than most six-year-olds.

Being you is a hard job but you make it look easy.  I know that you love me the same as you love my big brother, but you have to give him more of you.  I know you wish this was different and I know you feel the daily pangs of guilt for wishing this so. 

I understand that for every football match, tennis lesson and play date you take me to, you suffer the worry and pain of leaving my brother with mummy who has to find exciting things to do with him alone. 

I’m sorry that sometimes I get frustrated about how my brother isn’t like other ten-year-olds.

I try not to care when other kids ask questions or say mean things.  You have taught me to be strong, brave and proud.  I know we are the lucky ones to have such an awesome dude in the family.

I see those looks of despair and upset that you and mum give each other, at the times when my brother is not agreeing with the world around him.  I understand that sometimes we have to change our plans and cancel things I was really looking forward to, and I try not to show my sadness. 

I try my best to be good at those times when you really need to focus on him, and keep him safe and happy.

Sometimes I get hurt by a flying toy or a scratchy finger, but I don’t mind, wounds heal. 

Sometimes I don’t get heard, because there is a louder and more important noise for you to deal with, but that’s ok because I know you’ll sit with me later, when the house is quiet, and listen to everything I want to talk about. 

Every meal-time I have to watch the same episodes of the same programmes because it’s what helps my brother focus on eating; this used to annoy me but now we join in and sing along, it’s fun!

I see the wonderful joy you give my bro at every opportunity, and how you’re always looking for new, fun ways to make him smile and laugh.  I know Mum isn’t happy with all the trains, cars and buses you buy him, but I know you just want him to have the same fun as other kids. 

You are constantly seeking and creating new ways of bringing the world to him in a way that makes him happy.

I know my life in this family is very different to my friends’ lives.  Although I sometimes get a little bit sad about things, I would not change you, or my brother, for anything.

Every day you give me another piece of the puzzle that is helping me to build a picture of the world around me.  And every day you give me another reason to love you even more.  You are giving me all the ingredients to becoming a good person, and one day hopefully, I’ll be a wonderful dad, like you.

Love from Coby, age 6.

School holidays for families with a disabled child can often be anything but a break. I remember the huge shock I had when it came to the first school holidays, with six long weeks stretching out in front of us. Over the years I have created our own coping strategies. Here’s what we do, it won’t be for everyone but it’s helped us hugely. 

1. Planning.

Having respite support in place helps the holidays feel less stressful. It’s no easy task to recruit, train and manage people, but for us it is worth it for the support. We are lucky enough to have a respite package in place (I know we should not feel lucky, this is a basic entitlement, but society has somehow ingrained in me that I must exude gratitude for having access to support. I also know many families are not getting the support they need and deserve.).

If you don’t have a respite package in place and feel you need it, speak to your local authority. It’s often referred to as direct payments or social care support and can be used to employ a PA or enabler to help with your child.

2. Dialling down expectations

It has taken me a good few years, but I have pretty much stopped comparing our family to more typical ones. A classic summer holiday day for us will never be cinema and a meal out, or a day at the beach followed by a peaceful fish and chip supper on the pier, let alone going abroad. We may manage a chaotic beach trip but actually a day at home, paddling pool out (we are very lucky to have a garden), and some yummy food can be far more fulfilling. 

3. Curate social media

I am an old fashioned Facebook user. I like it because of the various support groups relating to my child’s condition. A long while ago I rebalanced my feed to up the amount of childhood disability blogs, charities and support organisations I follow, and to subtly hide posts from contacts showing ‘perfect’ family moments. This helps me a lot, I now have a feed dominated by people in the disability community and I feel more comradeship and empathy; less envy and comparison.

4. Mini breaks.

I don’t mean popping to a spa for a weekend, I mean half an hour here or there where I can go upstairs and chill, go for a walk or run or just muck about on my phone (the latter is by far the least fulfilling but I’m including it in the spirit of honesty). Often half an hour is hard to find, but when someone offers to help I now ditch the niceties and hand wringing and say a keen ‘yes please’ before bolting off to recharge. 

5. Accept boredom.

By this I mean I am kind to myself when I feel boredom looking after my child. My 9 year old is about 18 months old cognitively and a fun play to her looks like building a pull along train and me then walking around and around with it for what feels like hours. I have never been good at this kind of play, I get bored easily and I know I am not alone in this. While many families move on from this play and leave it behind in the toddler years, I still have to do this. It bores and frustrates me, and that is ok. I no longer feel guilt for feeling this way.

The old adage ‘one day at a time’, really kicks in for me in the holidays. The thought of the stretch of care that lies ahead can feel enormous if viewed as a whole. Taking it hour by hour sometimes is what helps. I am often surprised at how much I then find myself enjoying the days. Just book me in for that spa break in September.   

School holidays are different when you have a disabled child. I know it’s not just me that has to muster a tight smiled response as other parents are saying things like “only a few more days to go and we can chill” / “no more school runs for a bit” or even just, “almost the weekend” as I am gradually being flooded with a sense of dread and predicted exhaustion.

While I love spending time with my family, school holidays are HARD. One of the things I feel that is most misunderstood by those not in this world is that, in many cases, when you have a disabled child, especially in specialist provision, school is not just school.

It is a place of care and respite; it is the only thing that enables us to function day to day. My daughter is cared for beautifully by an awesome group of people who are professionals, who give it their all. This provision allows me to work, take the rest I need, and ultimately retain my own identity, knowing my daughter is receiving a brilliant education.

If a day of school is taken from us we are floored.

Be that through strikes (I sincerely hope the teachers and teaching assistants receive the pay rise they so obviously deserve) or through the lockdowns where so many families with disabled children were simply abandoned. And so it follows that, rather than being a beacon on the horizon, school holidays often feel like a looming threat.

As a parent, this is a painful truth to process; especially when ‘everyone else’, every media outlet, business or community group, is shouting about all the fun things there are to do. Sharing opportunities and family days out; 99% of which we could never dream of doing, or certainly not without an eyewatering level of planning and a big team of people.

I used to fight against this, to try to keep up, to try to make our days fit what we ‘should’ be doing in a school holiday; but not anymore.

I have discovered that going with the flow, for us, is the only way. There is a surprising freedom in this; once expectations are gone and I find myself saying a clear but polite, “thank you but that won’t work for us” to offers of days out, the pressure evaporates.

I was in the supermarket recently and we had an experience that I think illustrates this well. Our local supermarket has introduced the cutest little trolleys for children to push. I wanted my little girl to have a go I thought she’d enjoy it and, if I am honest with myself, we may feel a glimpse of what it is like to be a ‘typical’ family. But my little girl is uninterested in what she is supposed to do. She instead found her way to the freezer aisle and determinedly opened each freezer drawer and leant inside, feeling the cool blast on her face. She did this for at least half an hour. In days gone by I would have fought against and discouraged this, encouraging her to do the fun thing she was supposed to do (the little trolley).

I have now learnt to embrace her choices, tune in and even join in.

Turns out that an icy blast on your face on a hot day is quite a nice feeling, sort of like a reverse facial, I am sure it must be good for the pores. The payoff here is vast. It delights her to have me in her world. I have learnt more about this by reading about Intensive Interaction as a technique for engaging with children with learning disabilities. It makes a lot of sense.  

I am taking this learning and applying it to the holidays this year. We may find ourselves with our heads in freezers, but we will connect, relax and have some fun among the work and chaos. And that for me, is a success.

I was with a good friend recently when she was sharing some difficult things she was going through. Quite soon into the conversation she said ‘but of course it’s nothing like what you have to deal with’ and then went on to apologise and say her problems were trivial in comparison. She felt she had to stop and acknowledge how difficult my life, as a parent carer of a disabled child is.

This is a really common experience for me, and I am going to guess that every parent of a disabled child has encountered a similar conversation with a friend. It is well-meaning and from a place of kindness. It happens so frequently to me that I have said to all of my friends that I never want them to feel they cannot speak to me about their problems because they feel I have ‘enough on my plate’.

For me it works the other way, and I suspect this is the case for other parent carers too. Our lives can be extremely hard, we weather meltdowns, seizures, appointments, medications, therapies and sometimes emergency treatment when the big storms hit.

Hearing that other people are having a tough time too is often somewhat of a relief.

In the world of SEN parenting it can often feel like other ‘typical’ lives around me look perfect, easy, happy every day. When of course that is not the case. This feeling of difference can be compounded if friends stop sharing their day to day difficulties or choose to share it with others that have ‘less on their plate’.

In being considerate and not wanting to burden us with more, I wonder if it may be having an adverse effect. I wonder if what might be happening is parent carers, and anyone going through ‘Big Life Stuff’, are getting a false impression that everyone else is ‘fine’. When of course they are not.

For my part, I want to hear it all.

It doesn’t need to be big stuff but if my friends have had a rubbish day at work topped off by the cat vomiting then I want to hear about it. Come and moan to me. I want to be able to return the kindness my friends show to me day in day out. Being able to support someone else, to help and to give, can feel empowering and uplifting. Parent carers often have a hefty old toolkit of coping mechanisms as well and may be able to offer some helpful advice.

I will be sharing this post with my friends and reminding them that I am here to talk to. If they need any more persuading, do it for me and help me know that I am not alone and that life throws up challenges for everyone.