Toilet training when you can’t sit or speak

We’re getting to an age where it is unusual for a child of my son’s age to still be using nappies. He was 4 in October and will be starting school in September but he is a full time nappy user.

You see my boy has complex cerebral palsy and as much as I would love to ditch the nappies he can’t physically sit on a toilet or potty.

There is equipment out there that would support him to use a toilet if he is capable of a) holding his urine and bowel movements and b) communicating when he needs to go.

However, it is not always practical outside of the home, and the number of full changing places featuring a hoist are still woefully inadequate.

So even if we do get to a point where toilet training is a possibility he will still need to use nappies or pads on a regular basis.

So now he is 4 our Health Visitor sent out an incontinence nurse to deal with our referral to the incontinence team at the hospital. She takes some history and then rather sheepishly confesses that as per protocol, before she can make the referral she is required to give me toilet training advice and then give me time to try it out to see if it helps.

We both know this is a waste of our time, but you know, policy. So she doesn’t actually go as far as to try and give advice but says she will just put the referral through in 6-8 weeks time for us.

I couldn’t help but be a little bit frustrated I’ll be honest.

At the beginning of the month I received a letter from the incontinence clinic to say that they had received our referral but that before they would make an appointment they needed me to keep a diary for 3 days showing his fluid intake and nappy output on an hourly basis.

My heart sank when I saw this. It looked like a big administrative task and my assumption was that it was to rule out underlying health issues relating to urinary or bowel output.

So it felt a bit pointless when we know his bladder and bowels work just fine.

It really felt that the system wasn’t used to dealing with kids as disabled as my son.

This isn’t the first time I’ve felt like this.

Filling in the dreaded DLA renewal forms really highlight this as well, I answer most questions with “My son requires full adult assistance with all personal care tasks” while ignoring the tick boxes which just don’t apply to him.

So I queried how necessary this was with my Health Visitor who queries it with the clinic on my behalf.

I had a very long phone call with them where they maintained the information was still useful without really explaining how but did agree to make an appointment without the diary.

They then dropped the big bombshell, they will only provide 4 nappies/pads a day. I don’t know about you but I don’t fancy sitting in my own urine and faeces for up to 6 hours at a time!

It’s not too much of a problem while he still fits in supermarket brands, they’re very cheap to buy, but once he’s into specialist products it looks like it will cost a small fortune to top up the meagre supply from the hospital.

No wonder families with disabled children spend on average an additional £581 a month to enjoy the same standard of living as families without a disabled child, with almost 1 in 4 families paying out over £1000 more.

Birthday Blues

As we embark upon my daughter’s second birthday I am filled with the familiar and bittersweet emotions of her first.

I was hopeful that the feelings would have somewhat faded with time, but I’m starting to believe that her birthday will always signify more than just a milestone of another year passing, but also serve as a memory of the most life altering day of our lives.

My daughter was born deprived of oxygen and a heartbeat for 17 minutes due to a placental abruption.

It left us with a lot of uncertainties and, ultimately, a diagnosis of hypoxic ischemic encephalopathy (HIE) and quad cerebral palsy.

The months that followed her birth were nothing short of surreal and absolutely traumatizing to our family. I have never experienced such an extended period of stress and exhaustion in my life.

I feel like I have come so far emotionally, but I would be lying if I did not say a lot of my approach is a “fake it till you make it” method of dealing with things.

I’m not sure how healthy that is, necessarily, but it has always been my way of coping with hardships.

It’s kind of my emotional survival mode. Rather than shying away from typical families, I go out of my way to expose myself to them.

Being vulnerable to these feelings is my way of desensitizing myself. This is not to say I do not envy them.

I would love nothing more than to see my daughter not have to struggle through life with so many things people take for granted.

I’ve just tried very hard to not become a bitter person, and to understand that we are living different realities.

Neither right nor wrong; just different. We have traded play dates for therapy sessions and toys for medical equipment.

But, comparing my life to theirs is of no benefit to us. That does not always stop me from doing it, though.

Another realization I have learned through this journey thus far is how powerful words can truly be.

As a person who lived a fairly privileged life, I previously looked at the hyper sensitive and “politically correct” nature of people’s reactions toward word usage from a cynical view point.

Now, after having gone through this experience, I have learned a hard lesson on just how soul crushing a harsh word can be.

I still have to catch myself, at times. Using people first language and erasing words like “normal” in casual conversation are still new concepts for me, but I’m learning.

This is all new to me too, but I still understand the importance. Being on the receiving end of painful words has given me a greater understanding of the impact the language we use can have.

At the end of the day, being considerate of other people’s feelings is really not that hard.

Another thing I have learned recently through this experience is that intense amounts of positivity affects me emotionally almost as strongly as negativity.

It’s not a quality about myself I particularly like, but it is my truth.

Inspirational videos of kids defying all odds does not bring me comfort. Realistic expectations bring me comfort.

This comes off as negativity sometimes, but I promise it is only me finding peace in my situation for what it is.

I have learned that hope and expectations must remain fluid, changing often as we get a clearer picture of her future.

Keeping grounded is sometimes the only sanity I have. Strangers offer me words of encouragement, and anecdotal accounts of miraculous “cures”.

I can’t relate with blind optimism though. It does not resonate with me. I end up getting frustrated and dismissive, but I’m trying to learn patience.

This is a foreign territory for them, and I realize that sometimes it’s all they can offer. Honestly, prior to this I’m not entirely sure whether I handled similar situations in the exact same way.

With all this being said, I must state that none of this is coming from a place of discontentment of being a parent.

In fact, I often wonder if every parent shares the depth of connection I share with my daughter.

When you go beyond typical parenting and become their every move, you feel like they are a part of you.

These are just some of the many emotions I feel; which mostly consist of joyous ones.

It’s just sometimes I feel like the narrative in our community is so strongly rooted in the motto of “kids with disabilities create superhero parents,” though a lot of times we feel so far from it.

We often feel exhausted, unheard, and alone. I feel as though this thought process leaves a lot of people feeling more alienated than ever.

This is an unrealistic portrayal of the battles we face, and I feel as though it minimizes our experience.

As time passes, I have learned to acknowledge all of my feelings, even the less appealing ones.

I know we will have so many amazing experiences in our toddler years to come, just like the years prior.

There will also be many challenges and hardships along the way. But, that’s okay too.

The grief in parenting a medical fragile child

Just in case anyone was in ANY doubt, I absolutely adore my son. He is the most remarkable, beautiful, perfect little human.

But that doesn’t stop the grief that comes from parenting a child who is, simply put, medically fragile.

I remember the day of Sam’s first seizure vividly; the smell of coffee, the sound of music playing next door, the moment when my instincts suddenly screamed that something was very, very wrong.

24 hours later, our world shattered as his first of many diagnoses was gently given to us. But we dared hope that medication would stop the seizures.

I have never come to terms with seeing my child have a seizure and feeling utterly helpless to do anything. And they’ve never fully stopped.

Day to day, I’m happy and bubbly, chatting away to anyone who’ll listen, with at least 4 different projects in progress at any one time.

It’s a defence mechanism; if I stop, I’ll likely as not start overthinking and descend into the abyss of anxiety and depression.

As someone who already has an anxiety disorder (OCD), and a family history of anxiety/depressive illness, I’m right up there at the top of the ‘high risk’ group for relapse.

Over December 2019, I took time out to rest. I went to bed as me, and woke up a totally different person. Barely able to get out of bed, unable to eat, consumed with anxiety, grief and pain.

Grief for the life we may have had, the milestones my baby hasn’t reached. The many times I’ve held my sons hand and desperately wanted to put myself between him and death, to just give him a chance to live.

The way you feel your heart breaking as you hold your child still for a painful procedure as they fight to get away, pleading with you to let them be.

It’s how when my son is in a seizure I only notice that I was holding my breath when he starts to breathe again.

Its grief for the strain my marriage is under, continuously. Constantly being on high alert for the next emergency leaves little time for being a couple, and I miss the time we spent together when life was less complicated.

Is it any wonder SN parents often struggle with mental health?

Grief, anxiety and depression are a triad of cruelty. Parents of medically fragile children are engaged in battle on a daily basis for services, support, equipment, acceptance.

Sam’s birth remains the greatest experience in my life; he reminded me why life is precious and I knew from the moment he arrived that there was nothing I wouldn’t do for that little boy.

The rewards and joy that come from being his Mum are stratospheric, but the anxiety and grief are always just under the surface.

No matter how good the good times are, there is no denying that the lives we are living could not be further away from what we dreamt they would be.

Last years version is enough

I struggle with New Year as a celebration.

Don’t get me wrong, I like a glass (or two!) of bubbles as much as the next person and often more than them. But living alongside a progressive disease like Duchenne means living day to day.

It’s tough to think too much about the future, and in many ways it is tough to look back too much too.

My survival, and it’s been a big learning curve, is based on trying to live in the present. Occasions that bring both future and past into sharp focus bring unwanted sadness and fear.

It’s also the “new year, new you” bit that I find hard.

For many reasons, 2019 was a hard one. I did everything I could to keep myself going.

I think many of us live at the limit of our coping capacity every day and personally I have to work hard to forgive myself for the many, many times where I feel I should be doing it better, working harder, finding better solutions, being a better mum, carer, wife.

When it gets to New Year, the pressure is on to think of all the ways you can improve yourself, add things to the list of things you should be doing.

It plays on all my insecurities, makes me list all the things I need to do better.

Basically, I feel I need to add things to my “should” list, which frankly is long enough.

When Sebastian’s diagnosis came along, so may things were added to my role as his mother that I often feel overwhelmed and as though I’m not up to the job. And suddenly everyone is talking about eating cleaner, exercising more, improving their lives, working out how to be a better version of themselves.

And I forget that I have been trying my very best, doing everything I am capable of, and that maybe, just maybe that’s enough.

So here’s what I want to say. This year’s you doesn’t have to be thinner, fitter, better, more patient, a better spouse, a better parent.

You don’t have to take on new challenges and you don’t have to feel like you need a personal overhaul for the coming 12 months.

Because all of us are doing the very best we can.

I don’t mean stop trying. But I do mean don’t add things on to the reasons that you’re not good enough. You are enough.

Perfection is unachievable, even on the 1st of January.

Just you doing your best is enough.

Who’s path am I on?

Do you ever feel like there are things you should be doing or are expected to be doing because your child may share the same diagnosis of others?

My son Oliver was diagnosed with Spina Bifida and we are in an amazing Facebook group of other families who share the same diagnosis.

Because of this, we are able to always reach out for tips and see what progress other children are making or what they might be going through at the moment.

There is a lot I find myself comparing my son’s own progress to, or feeling like I may not be doing enough for him.

For instance, therapy dogs. I always find families looking to gather information on this so they can adopt one for their son or daughter.

This is no cheap nor easy task, and was once a hope for us, but honestly only because I felt that this is what we were supposed to be doing for our son.

He is only five and uses his wheelchair independently at locations such as when he goes to school.

I could not fathom a reason why at such a young age, it would be beneficial, and maybe it would or wouldn’t be, but I looked into it either way.

We actually ended up spending a hefty amount for what we read was one of the best types of breed for children with disabilities, a goldendoodle.

Hypoallergenic and blessed with a calm temperament that was very easy to train.

Unfortunately for us we soon realized Oliver had a fear of dogs. And I am talking to the point where he would cry and not want any interaction with the little puppy.

Understandably, this puppy was a child too and only wanted love and someone to play with.

His licks and nibbles meant no harm to Oliver, but was just too much for him. He was overwhelmed and we adopted her out to a loving family.

This path was not for us, but I felt like I should have been doing it because it was something everyone else was looking into for their children.

Time has passed since the puppy event, but here I am again with a type of surgery I see many families getting for their young children.

A surgery that has great benefits and would lead to so much independence in the bathroom for them.

But it is no small feat, and would require some pretty serious recovery time.

Not only that, but I just feel like although it would create so much independence for him, I don’t know what he may think of the decision I made or did not make years down the road.

Years down the road when he may be intimate with someone and have to explain that because of this surgery, he caths himself out of his belly button instead of through the ‘normal’ genital location.

This is something that should definitely be discussed with the child’s physician, which I will do, but sometimes I feel like I would never be in the position if it was not something I felt like “I should be doing” for my son because everyone else is doing it for their own children with the same diagnosis.

And this may just be something I will learn comes with the diagnosis.

Because our children share the same diagnosis and side effects, things we go through are similar given the physicality of it all.

Thoughts on screen-time for special needs kids

Up until recently, the TV or a video held absolutely NO attention for our daughter Brielle.

She is 8, with very limited vision in her left eye only, is deaf with cochlear implants and has other health needs/disabilities relating to her extreme prematurity.

She has LOVED listening to music, especially nursery rhymes for quite a few years now and will go through phases of a favourite song (in which the rest of us are pulling our hair out as she requests the same song all the time and we invariably comply!)

Before when we would try Mr Tumble or Barney or anything like that on TV and sit her close, she’d quickly lose interest.

We put this down to her very limited vision. Like naturally she loves to listen rather than watch.

Until very recently, the last several months, she has discovered Cocomelon cartoons and nursery rhymes on her iPad, on the screen on my desk, and youtube on the TV. OBSESSED!

She has a new little armchair her size she got for Christmas and she’ll happily watch Cocomelon for quite some time (Wheels on the bus is the favourite at the minute).

She does all the signs and gets really excited. We find ourselves using her iPad more and more for this.

Strangely, we’ve noticed her little temper flare up more that usual recently too and wondering if there’s any correlation to her watching more videos/increased screen-time?

Does anyone else have any thoughts or experience with screen-time/devices and their special needs child and their behavior?

Also I’m not sure we should be letting her watch/listen to Wheels on the bus everytime she asks but we usually do if we can ie. if it’s not smack in the middle of dinner or something like that.

I just feel I don’t want to pander to her every want but at the same time I want to acknowledge that we know what she’s signing and asking for, and give her what makes her happy!

Any thoughts from other parents would be welcome… and here’s a picture of the madam herself with her pink iPad 

Your choice

Something I have learnt since having children is that not everyone actually cares about you and your children.

They often care when it suits them or when they can gain something from the friendship.

Having a disabled child has taught me that in a much harsher way.

People often want to be associated with you for the way it makes them look or for the personal reward it gives them (whether that is likes on Facebook or others thinking they are a good person).

But the bigger lesson I have learnt is that when these people show their true colours, you have a choice – to allow them to continue to use you, or to put your own needs, and the needs of your children first.

Trying to make everyone else happy is impossible and comes at the expense of your own mental health.

After 18 months of therapy with a mixture of psychologists and psychiatrists, and a further 6 months of personal development, I have stopped listening to the wants of others.

The change I have felt has been incredible, I no longer worry about what others may think of the choices I am making, the only consideration I give is to the needs of my children and my husband.

They are the most important people in my life, so why should I make decisions based on what others want?

I stopped bothering with people who only contact me when they want something from me, or my children, and it quickly became clear who mattered and who didn’t. I cut away the toxic people in my life and felt myself and my children flourish.

As a result of that, I have been called every name under the sun- selfish, spiteful, ungrateful… I could go on.

Yet none of this bothered me, because the people who have said all of this are the ones, I needed to cut out to find my own happiness.

Life is too short to pander to their needs.

I live in a city where the only support system we have consists of work colleagues and incredible women who work at our children’s nursery ( a city I love and a support system I wouldn’t change for the world); I have a highly stressful job, and young twins- one of whom is severely disabled.

Why would I want to deal with additional, unnecessary negativity?

Finding my own happiness has been a long journey, yet now I have it, I’ll never sacrifice it again.

I will make sure I raise my children to know that their own happiness and mental health is worth far more than the wants of others.

No one else will put you first in this world and the negativity and stress of toxic people will never change.

Happiness is key so always make sure your comes first.

Politicians just don’t get it

There’s an election coming soon for our island of Ireland. There will be politicians knocking on doors hoping what the say to us will ensure our vote.

I don’t know much about the politics of politics.

I am aware of the importance of politics and what the right party in power can actually achieve.

I am the kind of person that can’t believe every politician is out for themselves despite our current government ensuring that they have extremely high wages and pensions; I refuse to believe that those up and coming politicians think that’s ok.

This isn’t a political post as I have already stated I don’t know enough about politics to debate it.

All I can write about regarding elections is what I have experienced in the past.

Confusion – when a politician is standing at my door and I tell them about the lack of services for children like Ethan.

Or the lack of suitable disabled toilets or the fact that my son hasn’t showered in his own home in over three years and that I have to carry him up and down the stairs to bring him to and from bed- they all respond the same way.

They tell me how horrible that is.

They tell me how they plan to change things.

They tell me how wonderful I am – which by the way, politicians, is a platitude which I don’t care for.

They tell me that they will get onto the city council and help get funding for an extension as clearly it is a health and safety issue for Ethan and I, if we carry on this way (no shit Sherlock)

They tell me it is a basic human right to have access to a safe space to sleep and wash (once again, no shit Sherlock)

They tell me that a ‘changing places’ idea is fantastic and maybe I could get back to them about that (I give them firefly website address and tell them all the information they need is on there knowing full well they won’t even google it.)

They remind me that I too can campaign for wheelchair accessible beaches.

They agree that I probably don’t have much time since I am an overworked, underpaid, under appreciated Carer but maybe I could start something and they will of course help, when they can.

They agree with me that the homeless crisis is terrible (while empty vacant houses are never too far away)

They take my contact details and say words like – “I’ll get onto this as soon as I can. It’s shocking” (I know they will get on to it, but once that vote has been casted they tend to come back with the same line as I got from the powers that be)

They agree with everything I say. They assure me that with their help we can at least get someone to help with our housing or change the system for kiddies like Ethan to make it more accessible and basically better.

The confusion for me comes after we have had this conversation.


Radio silence.

When some of them do come back to me, and some do, they inform me about the ‘red tape’, the ‘waiting lists’, the ‘embargos’ and of course the ‘budget’.

They tell me the sh1t I already know.

So what is a politician?

A politician is defined as – a person who is professionally involved in politics, especially as a holder of an elected office.

Who elects the office?

You and I.

While I admit I don’t know a lot about politics, I do know that without us, the voters, they can’t get a seat at the table.

So this election season I am going to have my questions ready,my knowledge about local politicians up to date and I am going to take my time casting my vote.

I’m tired of raising the same issues over and over again.

I’m tired of living in an Ireland where the elderly are left on trolleys in overcrowded understaffed hospitals, where homelessness is the ‘norm’, where disabilities are seen as something to overcome, where wheelchair users still can’t get a fecking train without notifiying the train station in advance. where children like Ethan are being left on endless lists while no one replaces the therapist that had decided to change career, where carers and those living with disabilities are treated as second class citizens and a burden on society…the list is endless really.

I just want a change.

I want staff shortages to be addressed and staff replaced.

I want access to my city while I am bringing my son around the city.

I want to be able to bring my son to the beach!

I want the elderly to be treated with respect – we will all be elderly at one point.

I want our disabled community to be able to get out and about without having to let the likes of a train station know their plans!

I want our government to stop – stop increasing their own wages and pensions. One pension is enough for anyone, yet most of them have two.

And, I want our politicians to remember that they work for us, the public.

Change takes time but it is time for that change now.

Please cast your vote well this February.


Sometimes families of children with special needs tend to isolate themselves. And it could be for a lot of different reasons.

But I find the number one reason to be because they don’t feel like their family is included.

I myself have never experience this with my family or friends. But my family has become one of those isolated families lately.

We’re usually invited to everything and Jaylen is always included in whatever it is. Because they know if he’s not included than we will not partake in it.

It’s just lately we been spending a lot of time home. My friends and family do come over to spend time with us because I’m open with them as to why we stay home.

But for those who don’t know they often get offended when we don’t come around.

They assume we feel like were better than them or we just don’t have any time for them anymore when it’s not the case.

I must admit that being home all the time get very depressing especially when I want company, and no one is able to come over. But I can’t expect everyone to stop their lives for us.

Raising my son has become challenging but knowing his diagnosis has helped us to find the resources we need to help him as well as us. And right now, the safest place for us to have him is home.

In our home we have things we need to keep him safe and we can’t expect everyone to Jaylen proof their home just for us to come over.

I never expected it to get like this for my family, but it has been our reality for a while now. And although from the outside looking in people say things can’t be that bad.

But its honestly our reality no matter how good we make it look. And to be honest it took a lot for me to accept it for what it is.

That include talking to other families that have been through this and had to isolate themselves to get through it as well.

I’m thankful that I have the support I have as we get through this. And even more thankful to have people I can talk to.