That Doesn’t Work for Us

Being the people pleaser that I am, I have spent much of my life giving yes after yes to people who needed something or invited me to something.

If I ever couldn’t attend or engage, I immediately began over-explaining the very valid reasons why I was truly unable to attend.

And still, some people simply didn’t understand how I could give no for an answer.

I have been doing hard work with a therapist for a quite some time and boundaries, especially as a parent of multiple children with disabilities, has been a frequently addressed topic.

It is exhausting to feel like I need to say yes to others when I am depleted, my children are struggling, or for reasons I may not want to explain.

To combat this, my therapist asked me to start using a simple phrase with little to no explanation to follow.

The phrase is: “Thank you, but that won’t work for us.”

This phrase isn’t only reserved for times when we are too ill to leave the house or have a scheduling conflict.

I have the freedom to use this phrase anytime….and so do you.

However, I understand that it can be frustrating for those on the receiving end. It may seem like there is no reason for my turning down of an invitation to connect, socialize, or help-out.

I realize this and I ask for grace. I ask for you to know that I am learning the validity of reasonings I use to ignore.

I am learning to prioritize my family’s wants and needs and there isn’t always a way or desire on my end to explain such things.

When I say, “That doesn’t work for us,” I might really mean:

-My child is in too much pain to leave the house today.

-We haven’t slept in four nights and I am too tired to be around people.

-My child has a compromised immune system currently and we can’t be around foreign germs.

-We have had 16 appointments this week and one more scheduled thing is just too much.

-My child is triggered by you and we don’t know why.

-You say really insensitive things about my child, and I am too weary to stand up to that today.

-We finally have a day without appointments or procedures, and we just want to be home.

-Depression and PTSD are kicking my rear and I can barely make it through the day caring for my children.

-We can’t attend because of the lack of accessible toileting options.

-My child has some really embarrassing behaviors right now.

-I am feeling fragile and it hurts too much to be around people talking and bragging about their developmentally “normal” children.

-I can’t handle all the questions about how we are doing and what we are dealing with today.

-That location is really inaccessible, and my child feels self-conscious about being carried and positioned and fussed over so much.

-My child is healing from a surgery or procedure we aren’t comfortable sharing about.

-My child is waiting on a new wheelchair and doesn’t have a comfortable way to get out of the house.

-Not all my children will be able to participate in that activity or outing and I am not willing to leave some behind.

-We have really bad memories associated with that and need some time and distance to heal.

-I will use every last ounce of my reserve if I try to make that happen for my family.

-While that is an easy outing for your family, it takes immense planning for ours and we are just not up for that.

While this list may seem excessive, I could add dozens more reasons.

So please, be gracious when I turn you down.

Be understanding and maybe ask if there is anything you can do to make it work.

Don’t stop inviting us and just know we will give a yes when it works out the best for us and can be truly enjoyed for all involved.

Special needs parenting: Limited Edition

Did you know that this Friday, 30th April is Undiagnosed Children’s Day?

Did you know that approximately 6000 children are born every year with a genetic condition so rare that science hasn’t yet discovered what it is?

Did you know that many children remain undiagnosed into adulthood?

I didn’t. Well not until I had my son Brody.

Before he came along I didn’t know that being undiagnosed was even possible. I naively thought doctors had the answers for everything. That science had it covered.

No one really tells you your child is ‘undiagnosed’. You kind of fall in to this land of limbo. In our case I pieced together the lack of answers and global development delay label that my son had been given around the age of 3 and stumbled across the charity SWAN (Syndromes Without A Name) UK.

It was through SWAN UK that I finally found somewhere we fitted in – amongst other beautiful misfits.

Brody is 9 years old and has diagnoses of epilepsy, autism, megalocephaly and hypermobility.

He also has a foot deformity and unstable ankles.

The best way to explain him being ‘undiagnosed’ is that his doctors think that although he has these conditions and symptoms they do not explain the bigger picture.

He has no overarching diagnosis. Up until very recently genetic tests all came back ‘normal’.

This is the first Undiagnosed Children’s Day that we are closer to finding an answer.

They have recently found a gene change in his X chromosome that may explain his symptoms but it’s early days in researching it.

Geneticists in France have found half a dozen other males with the same gene change presenting similar symptoms to Brody.

One day, this gene change – ‘SLITRK2’ – might be Brody’s rare diagnosis.

It’s a rollercoaster having a child who is undiagnosed.

As the years have gone by, I have got used to the unknowns, but in the early days it was really difficult.

I just wanted answers and no one could give them to me. I’m not going to lie, deep down I’d still like answers.

After all, no diagnosis means no prognosis. But time teaches you that really no one has all of the answers, diagnosis or not.

And when you have a child who is undiagnosed the reason that they are is because they have a really rare genetic condition.

So if we are ever in the situation of science discovering what it is, we are at the very beginning of finding out what it means and in reality won’t know much.

The truth is Brody is much more that being undiagnosed.

He is much more that the diagnoses he’s been given and the symptoms that he has.

He is Brody – a happy-go-lucky, raspberry blowing boy who has taught us what’s important in life. He is our biggest teacher and greatest lesson.

He is a limited edition.

To the special needs parent…

You are very much surrounded by a community of parents that understand your life.

You may feel alone but know there is a parent out there in your situation that is standing with you in solidarity.

Whatever you are feeling and going through, someone else has or is going through it.

YOU are doing a great job. YOU are making a difference in your child’s life.

It’s tough. It’s hard.

Sometimes you just need to cry, scream and eat a giant bag of chips.

I’ve been there just like you. Celebrate all your child’s triumphs, there are so many people that are celebrating with you.

Fight like hell for what you think is best for your child.

YOU are the expert in your child.

Experience things with your child and enjoy them.

Be a mom when you can.

Be a nurse when you need to and be a therapist when you have to.

You are exhausted. You are drained emotionally and physically.

There are days you wish you had a different life. I hear you.

Sometimes you feel as though you are the only one advocating and researching to make the best life for your child.

You are working a full time job being a special needs parent.

I see you but remember you are doing a GREAT job.

Parenting isn’t easy, no matter the situation you are in.

Every parent has hard days, every parent has days that they feel as though they aren’t a good parent.

Every parent feels that they can do more. It’s NORMAL. YOU are normal.

YOU just may have more on your plate.

I see you. I hear you. I feel you.

Reach out if you need help or someone to talk to.

Find something for YOU something that will help fill up your cup.

Find a hobby, however small and take time for you as often as possible.

I know you often live in survival mode but remember to take care of yourself so you can be the best version of yourself.

YOU matter.

Bathroom Barriers and the Role YOU have

The length of the list of basic human rights I learn are denied to many never ceases to surprise me.

While I recognized a handful of these issues before motherhood, becoming a mom (specifically to children with disabilities) has caused both my awareness, anger, and action regarding these most important matters to grow exponentiality.

I am thankful for the parenting journey I am on and the situations I encounter because they grow my awareness of these injustices to a degree that never would have been reached had I not been so personally affected by them.

There are so many things much of the population takes for granted each day, often without even knowing it.

For instance, access to a restroom.

One of the frustrating barriers disabled individuals and their caretakers face is lack of accessibility to appropriate toileting accommodations.

While most of the world doesn’t think twice about the kind of bathrooms that may be available in public, my family and our precious children with medical needs must consider and plan around bathroom access each time we leave the house.

Easy access to toileting in a way that preserves privacy and dignity should not be something that has to be fought for. It should be common sense, automatic.

There should be no conversation to be had about it.

Yet, that is not our reality.

Many public places fail to have enough usable wheelchair accessible stalls if any at all.

Beyond that, there is the issue of space for changing.

As a mom to babies and small children, I have found myself frustrated by the fact that many public bathrooms don’t even have baby changing stations.

But at least I can usually lay my little baby or toddler across my lap or on a counter to have their diaper changed.

What about those who are older children, teens, and adults who use diapers, medical equipment, or physical assistance to meet their toileting needs?

While I know that inclusive bathrooms exist–offering adult-size changing areas, substantial room for wheelchairs, etc–I have never seen one in person despite having parented older children with disabilities for six years.

Rather, I have found myself changing and assisting my loved ones on the dirty floors of vehicles or avoiding certain travels and gatherings where I know accessibility will not be offered.

It seems that many businesses are hesitant or unwilling to do what it takes to offer truly inclusive toileting areas.

The need to use a restroom is not something individuals can simply choose not to have.

Every single person needs a safe, comfortable, usable space to take care of their toileting needs.

So why is the provision of such spaces not a greater priority to so many public places?

Maybe they have gotten by without it for so long they don’t think it matters.

Perhaps they truly have no idea how inaccessible their spaces are.

Whatever the reason, we must raise our voices and demand change in this area.

The voices of the disabled community are even more powerful when joined by other voices, by YOUR voice.

The more voices raised, the greater capacity we have to cause waves big enough to create true change.

We need YOU. So how can you help?

-Educate yourself.

One of the greatest causes of lack of accessibility is simply that people don’t know.

People who do not have certain needs don’t usually place themselves in the shoes of those who do.

Choose to be intentional about learning about the accessibility in public places near you.

Start taking mental notes of what places do or don’t offer appropriate accessibility.

-Speak up.

When you notice a business does not offer accessible toilet/changing spaces, mention your observation to the staff.

If you encounter a business that does offer accessible spaces, say something then too!

Make a point of mentioning how much you appreciate their inclusivity and tell others so the business can receive the support they deserve.

-Spread the word.

As you yourself come alongside disabled individuals as an advocate and ally, help make the issues known to those in your circles so they too can gain knowledge, understanding, and opportunities to advocate.

The fight for inclusivity and accessibility does not belong only to those needs are not being sufficiently met.

The fight belongs to every one of us.

When we battle on behalf of those around us, we become stronger as a whole and remind ourselves of who they are and who we are: simply human and simply kind.

Simply humankind.

Special needs parenting: Talk to us

As I stood in the queue in the coffee shop earlier this week, inside the children’s hospital that has been our home for over four weeks, my attention was drawn to the little girl sat with a lady.

She may have been her mum or she could have been an auntie, maybe even a guardian or a foster mum.

These people were strangers and I don’t know their story.

The little girl had a feeding tube.

A tube that is placed directly through the nose into the stomach or bowel.

I looked over at her, I caught her gaze.

The new way that society works with the use of face masks to protect us all from this deadly entity that has brought the world to a standstill for over a year meant that she couldn’t see the warm smile I sent over to her direction.

But it was there. It wasn’t a smile of pity. It was a genuine smile.

I wondered what her story is.

She seemed happy and she played with a toy on the table.

That’s all we want for our children isn’t it? We want them to be happy and healthy.

Of course we all want our children to grow up, become successful and who knows? Maybe even change the world.

But ultimately we want our children to be happy and healthy.

I wished I’d been able to go over and talk to them but due to a combination of lack of confidence as well as social distancing measures that are currently in place and that need to be respected, I felt I couldn’t.

I don’t even know what I would’ve said.

I wouldn’t have wanted to appear rude, maybe I would’ve just let her know that we share a common denominator in that my child too has a feeding tube albeit his is now in his stomach.

It might’ve just been an exchange of those few words or it could’ve led to a full blown conversation.

Who knows?

As I collected my order and was about to leave I glanced over at them again.

Lots of thoughts ran through my head.

The main thought being I hoped they didn’t think I was being rude.

I smiled once again behind my mask as I walked back to the ward where my child was.

Often I have walked down the street where I have passed people who have blatantly stared at us as I push Jaxon around in his wheelchair, his tube trailing round the back leading to his feeding pump bag.

Sometimes people have stared as I’ve tried to assemble his chair in the car park.

There’s been many situations where I’ve felt the scrutiny of strangers gazing at us when we have been out and about.

A glance is one thing but to stare is unnecessary.

I can’t speak for others but it makes me incredibly uncomfortable.

Whilst it wouldn’t be what everybody would want, I’d much prefer those who are staring to come over and talk to us, even at a distance if social distancing measures remain in place.

“Be kind” was the motto at the beginning of 2020.

Staring isn’t kind, it’s rude and unnerving. Glancing over, smiling and giving a brief acknowledgement isn’t rude.

A smile can change somebody’s day.

But to glare at somebody because they may look different, they may be more vocal than you deem appropriate or because they are disabled can make them feel incredibly awkward.

It can make an already difficult situation a million times worse.

This particular experience got me thinking about all the times we’ve experienced prolonged stares from strangers.

In those early days when Jaxon was a baby and the world of disability was so new, all I wanted was to feel some sort of normality.

Strangers staring at us in the street made me feel even more isolated from society.

I wish those who chose to stare would’ve come up and spoke to me, asked me questions and gave me the friendly smile that could’ve changed my day.

Some did come and talk but occasionally their remarks would be less than helpful and leave me feeling utterly despondent about our life.

Some would ask questions, not intrusively, just through curiosity.

They were my favourite encounters and I’d welcome them going forward.

I’m very much a people person.

I have a page on Facebook where everything is laid bare when it comes to talking about my experience of parenting a child with complex medical needs.

I’m not afraid to share the ups and the downs.

I’m not afraid to publicly declare the pride I feel on a daily basis for my little human.

I definitely wouldn’t be afraid to share our story to a stranger in the street if we were approached in a kind manner.

So as the world does slowly return to the way it was before and in the future when social distancing is a thing of the past, if you see somebody who doesn’t quite fit your idea of normal, don’t just stop and stare.

Glance over and give them a smile.

If you feel confident enough, talk to them.

You never know, it could change their whole day.

Special needs parenting: Finding Resources

Have you ever spent time researching something?

Most of us have spent time researching one thing or another.

For some, like my dad, it’s a way to kill time, a relaxing thing to do after a long day, a way to answer those “I wonder” questions.

For us (parents of special needs) it’s an arduous and often frustrating process.

Special needs equipment is so expensive and also hard to find.

I have talked to many parents that adapt their own equipment and “hack” things to help their child.

Why does it have to be this way? It’s frustrating!!

Firefly has given us so many options.

They have given us the Go To Seat that helps Sawyer sit in any seat and even a shopping cart!

We have the Scooot that helps Sawyer scoot around the upstairs as well as provides a wheelchair that he can move on his own eventually.

Don’t even get my started on the endless opportunities of the Splashy seat.

We have used it at beaches, pools, showers, bathtubs and even in the snow! Sawyer has been able to enjoy his sprinkler with his friends outside in the summer.

Now, the biggest question, why did I have to find out about this amazing company through a friend?

Why aren’t more doctors and therapists privy to this company and others like it (if they exist).

I know that many who are reading this are familiar with Firefly, but what if this blog is shared to someone who isn’t familiar?

What if this changes the life of a special needs child like it did ours?

What if, just what if, this blog reaches a parent that is feeling defeated?

I want to make sure you understand that I DO NOT work for the company.

I’m a special needs parent that has tried all the equipment. I am a Firefly user and advocate.

I have every product and look forward to more that come out.

Now, for the most important part: use your community around you.

What I mean by this is USE other special needs parents.

Use the ones in your community and the ones outside of it.

Learn from parents who have been there and share successes or things you have found that has helped.

We are a large but tight knit community, use it.

On The Same Team – Why Working Together Wins!

We are always stronger, better, more focused and more successful when we’re working together than when we are working apart, and that includes when families, schools, medical and social care professionals, everyone involved in the life of a child or young person, has a shared passion and vision for them.

This is especially true for children and young people with special needs or disabilities, where working together can have significant lasting benefits for everyone.

Here’s just a few examples of why this can be the case…

Working together makes us more successful in supporting our child

We’re all human, and that means all the good, bad and ugly that goes with it.

Whether we admit it or not, we respond better, act better, do more, for people that we get on with and can work with than people that we don’t.

It’s the same for all of us, whether we are family members, professionals, whatever role we have in the life of a child.

As family members, we can be used to fighting for everything, going into meetings with our boxing gloves on, and where we need to, we still must.

But we should also be aware that people, even on a subconscious level, label us by our actions and if we are always the ‘difficult parent’ or ‘confrontational’ then whether we like to admit it or not it can do harm to the chances of our child getting the support they need.

We might feel it’s the only way to get what our child needs, but working together, finding a way to work in harmony, can help create even more successful outcomes.

We need to change ‘them and us’ to ‘us together’.

Better ideas come from collaboration

When we work together, new and better ideas can emerge that can help our child.

Collaboration encourages creativity and in putting new exciting ideas into practice we can see positive ways forward opening up for our child.

Neither families nor professionals have all the answers, even if we think we do, but together we are greater than the sum of our parts.

We bring different skills, knowledge and understanding together that can spark some groundbreaking thinking if we learn to collaborate well. 1 + 1 really can = 3

A unified approach improves focus and means everyone learns together

When we are working in harmony, family and professionals working with common goals, respecting each other and recognising that together we have more to offer than we do individually, we can focus on the main reason we’re working together which is for the benefit of a child or young person.

Keeping our focus there will improve the chances of other frequent causes of disagreement, e.g. finance, being lessened; it changes the narrative.

As we work together in harmony, we learn more about each other and how we can unlock the potential of a child or young person together.

Supporting children together can mean we’re stronger at supporting everyone

The lessons learned from working well together can be used beyond the immediate benefits for the child or young person we’re focused on.

New strategies can be passed on by a family to other families on a similar journey; professionals work with many families and can share the fruits of successful collaboration with others.

The ideas we’ve helped to shape can positively influence the outcomes for many children.

Working together makes sense for everyone, but as we’ve seen it can have really significant benefits for children and young people with special needs and disabilities and their families.

It can be hard, it means that many of us need to put aside negative feelings we may have acquired through bad previous experiences, to try to build relationships again, to reach out in new ways even though we’re exhausted, but if it can improve the outcomes for our child, it kind of asks the question, why wouldn’t we try?

Working together wins!

Peace, Mark

Complex Health Needs and Lack of Sleep

Tiredness. Sometimes I feel it’s all I ever harp on about.

Someone will ask “how are you?”, my answer? “I’m fine, just tired”. The person usually responds the same.

It’s a good answer to have in a way. It’s better than not being okay, or being outright demoralised and depressed.

Okay implies a sense of normality and routine that is not afforded to families like ours when in hospital for example.

“I’m okay” and actually meaning it is a luxury for me.

It’s better than “my anxiety is crippling me today”, “I’m so fatigued it has entirely debilitated me”, “my back is really hurting and I don’t want to move”, and other choice phrases.

The reality is, my child is 7 and doesn’t really sleep.

Some nights she will sleep fine and we are all surprised.

I find on those nights I’m still on edge, waiting for a medical emergency or for her to cry out.

It’s exhausting.

It reminds me of when you’re pregnant and everyone around you jokes “get used to having no sleep for a few years!” and “oh those night feeds!!

I don’t miss those.” Well fast forward 7 years, and feeding is a 24 hour thing here.

Feeding pumps don’t mind about waking you in the night.

Amy has no other way to communicate than to cry and shout.

So those nights of constant ups and downs are still very much a reality for us.

Most nights it appears to be a neurological reason she is awake.

Sometimes her brain just pings into on mode and gets stuck there.

We see her wrestle against her involuntary movements getting frustrated that her own body won’t let her sleep.

She is on a whole host of medications that I am convinced would knock out a whale.

Yet here we still are.

Other reasons can include seizures, retching and needing suction, stuck in an awkward position, tubes tangled round her, feeding pump occlusions, entire outfit and bedding change needed due to leaking pump or full nappy.

Every time you enter the room you’re not sure what you’re going to be faced with.

Some days I pray to whatever out there that she isn’t stuck upside down, sometimes my back just can’t take swizzing her back round.

Amy’s doctor recently said to me “find a medicine or cure for children not sleeping and you’ll be a very rich lady!”.

Medicines help her get to sleep, but even then we can endure hours of seizures, hair pulling, lashing out, kicking and hitting before she is able to arrive in the land of nod.

It’s frustrating for everyone involved.

She goes to bed really early.

We have tried so hard to keep her up, we’ve tried everything.

But come 6pm it’s like someone has flicked a switch.

It’s quite isolating at times as it means that in non pandemic times we aren’t able to go out as a family in the evening.

Any attempt at doing this would result in self injurious behaviour, meltdowns and seizures.

It does make me sad.

I love being home but I would also like the option to go to firework displays, or the cinema, or just anywhere everyone else gets to go in the evening.

It’s easy to become resentful and depressed about it.

I have to remind myself constantly that this isn’t what Amy wants either.

No one actively seeks to be unhappy. 

Recently more so than ever we have felt the effects of the lack of sleep.

This morning Amy’s eyelids were swollen and under her eyes black with exhaustion.

She sat in her chair rubbing her eyes and looking generally unwell.

We haven’t had overnight respite at the respite centre in over a year.

It makes me realise just what a difference those nights made for us.

People would ask “what are you doing with your overnight hours?” and I’d laugh and say sleep. 

I do hope that one day things somehow improve. Sleep is so important for everything.

You can do all the exercise, all the healthy eating, all the mindfulness and meditation – but without sleep life is so much harder.

I suffer already with anxiety and insomnia some nights and find myself angry that she is asleep and I’m not.

Last night, just as I had got to sleep, she woke up.

So today I am sporting one of those tension headaches that feels like a tight band around your head. 

There is little support really for lack of sleep.

There are medications for everything, though I am learning that it isn’t an exact science.

You can have epilepsy and still seize on meds.

You can have muscle spasms and still experience intense pain on muscle relaxants. You can have sleep meds and still be awake all night.

So much of our life is laced with this hypocrisy and desperation to achieve a more bearable normality.

Each issue we tackle, a new one will pop up and replace it.

No sooner have we resolved some complex gastro issues – and an epilepsy themed issue will emerge.

It’s a constant cycle of trying to manage these very complex health issues whilst also running on empty.

Amy presently can’t communicate what is bothering her and once upset it is very difficult to reason with or placate her.

I sometimes envisage myself in her position.

In bed, unable to sleep, and two people appearing at her bedside oblivious as to how to help but are her only option to get what she needs.

She must get so angry and frustrated with us as we bumble around querying pain meds, is the room dark enough, maybe there’s too much background noise, maybe she has an itch she can’t scratch.

Maybe she just wants to be alone? Or maybe she wants to be held?

Do we stay or leave? Whichever option we select usually involves failure and her continuing to cry if not gets even louder. 

It’s easy to beat yourself up over it and blame yourself for not being able to meet your childs’ needs; I just hope that Amy knows that everyday we are trying our absolute best.

I’d love to look back on this piece in years to come and have found better ways to help her communicate and to have got the bedtime routine to be a less traumatic experience.

I’d love to sit by her and read stories together, or for her to have a little kiss on the head and drift off into a sound sleep.

But for now that isn’t our life, we just have to keep trying.

Special needs parenting: “I chose you”

Have you seen the film on Netflix called “The Willoughbys”?

It is our six year old triplets absolute favourite (this week anyway!).

It wouldn’t have been one I’d have thought they’d enjoy because it has what I feel are quite “mature” themes, including the absence of parental love.

In saying that, they think it is absolutely hilarious and when chatting to me casually about it I was able to see that they have most definitely grasped the overall messages.

It’s funny isn’t it, how children’s films can appeal so little to adults yet be absolutely spot on for the kids!

Our little man who has spina bifida, hydrocephalus, epilepsy and learning disabilities in particular really enjoys watching it.

His favourite part is the song that goes along with it, called “I chose you”.

Jacob is naturally drawn to music and uses it to communicate with us if he is having a seizure or he is struggling to express himself.

Music will generally bring him out of a non epileptic seizure and sometimes even the bigger epileptic ones.

If nobody else is around to have to endure my “singing”…we will sing it together and he always makes sure to look right into my eyes and say, clearly, “I chose you”.

That’s pretty much the point I have to hold back the tears and pretend like I’m not a soppy overtired mama!

What a perfect opportunity though to discuss his disabilities with him!

He has asked me in the past if I hate his spina bifida and I always say “no”.

To me, hating that is hating a part of my child who I love unconditionally.

Jacob without his medical conditions is not MY Jacob, and I wouldn’t trade my superstar for anything.

So I tell all three, often, “I chose you” and make sure they know I will always choose them exactly as they are.

Given his behavioural difficulties that mimic ASD in a lot of ways, I use a line “Now I found the strength, to make a change, look at the magic I’ve found” to gently remind him that sometimes change can lead to beautiful things.

It sounds really silly, and I can understand that to other people it probably is.

It works for our family though so I’m not worried about how it looks on the outside.

Another great one he likes is “Ohana means family, family means no one gets left behind or forgotten” from Lilo and stitch.

We actually have a decal on our wall of this quote and family pictures around it.

If we are out for a walk and Ben and Chloe want to do something that would exclude Jacob e.g. climbing trees, we compromise and set a time limit to it.

Then we come back together and Jacob will happily say “Ohana” and move on.

For a child with learning disabilities, it is remarkable to me that he can retain and genuinely understand the sentiment behind these things!

Despite being a complete musical flop myself, it feels so precious for me to have found a way to communicate with Jacob that is relaxed, informal and great fun!

We now do music as part of our daily routine and will sometimes have kitchen discos!

Thankfully for our neighbours, we live in a detached house….