Explaining death to a child with additional needs

*Trigger Warning: Discusses death*

At 100 years of age, my Granda sadly died recently surrounded by his children in his own bed free of pain or distress. It was what I would consider a “good death” as both his granddaughter and a trained nurse.

It was such an achievement to live to 100 years old and he was an extraordinary man who lived a very interesting life.

I’m Mum to 8-year-old triplets who lost my paternal Nanny in 2019 when they were a little bit too young to understand the “finality” of it all.

When their Great Granda died, it was definitely more deeply understood by Ben and Chloe, although Jacob struggled with the concept due to his brain injury (acquired hydrocephalus secondary to spina bifida).

I reached out to a child bereavement charity who offered excellent support and suggested books and other resources to help explain what it all meant

Sadly, Jacob didn’t really seem keen to engage with any of it and seemed quite disassociated with what was going on. They were given the choice if they wished to go to his funeral or not, and they chose to go.

On the day of the funeral, I explained to Jacob especially that there would be a coffin there. He inevitably asked what that was and meant, which entailed further discussion.

It is really so hard to know how much detail is appropriate for a child of 8 years old, never mind his added learning disability. He seemed to have a degree of understanding but became quiet when we entered the church.

He held my hand through the whole service and was just so quiet.

Anyone who knows him would laugh at that since Jacob is very rarely quiet!

When the coffin was taken out and we all went into the next room for refreshments, Jacob burst into hysterical tears.

It went on for what seemed like a very long time and my heart really ached for him. I think seeing the coffin, and understanding the significance of that, finally hit him.

All I could do was sit with him quietly and be there in case he wanted a hug or to talk.

He eventually calmed down and became his usual bubbly self, but I think sometimes there is a temptation to hide the reality of death from children, especially those with additional needs.

While it is every parent’s choice how much to tell their little ones when big things happen, I try to always be upfront and honest with my three.

I obviously censor things to a degree and have to alter how I tell Jacob at times, or repeat the message until it sinks in for him, but I’ll keep doing that because I truly feel that it is teaching them all about the full range of human emotions

The Identity of a “Medical” Family

How do we identity ourselves? I think constantly about identity and how we are perceived. I pay probably too much attention to wondering about the perception of complete strangers. What do they think about me when they see me?

I know that ultimately it doesn’t matter what a stranger thinks, but I think what eats at me is the very incorrect perception that families like ours are given everything on a plate and don’t have financial constraints and are in some way freeloading.

It is far from the truth and I always feel on the defensive even when I know the majority don’t feel this way. I have this constant need to feel understood and instead of stares or pity I just want for all of us to be equals, on a level playing field for all, and to be treated with kindness and not judgement.

Our identities are said to include our values, beliefs, and our personalities.

It also encompasses the roles we play within our families and in society. It includes our hobbies and our interests and many other things. I often feel that for families like ours – a lot of this is sort of lost.

Our priorities are a little different. Our perceptions of life are likely somewhat altered by our past experiences and our current challenges. It can entirely change you as a person, for better and for good.

We may have just spent a week in hospital – all plans cancelled, our worlds upturned. We may be exhausted from the 10th consecutive night of broken sleep. We may actually be perfectly fine and just wanting to live as “normal” a life as possible.

We are like shape shifters, adapting to whatever is thrown at us next; often with no warning. I always think that when I am out with Amy they will see a “disabled child” and a “parent carer”.

I have read before that carers very often feel they lose their sense of identity

The role of carer is severely underpaid. There is no annual leave, there are no sick days, there is no special pension scheme. It’s easy to feel undervalued and underappreciated. A depleted self-worth can affect how you feel about yourself and your role in society.

My life is very much Amy centric. I think for most parents their child is their main focus in life, or at least one of them. When your child has high medical needs and relies on you for 24 hour care it is hard not to let that role define you.

I remind myself regularly, I am not just “mum” (as I am so often referred to by many grown adults!), I am Ceri-Ann. 

I am a parent carer, I am mum, but I am Ceri-Ann first.

Amy is Amy. Yes, Amy has a disability and various diagnoses. But before she is a “disabled child”, she is a child. She is her own person.

Identity is so often defined by what you do for a living. I disagree with this wholeheartedly. So many people work a job to pay the bills and don’t necessarily do something that they are passionate about.

It’s a difficult one for me because I am privileged to be Amy’s mum and carer; and yet I do yearn for that “normal” life (if there is such a thing.) I miss being able to clock out at 5pm and be rid of my work responsibilities for the day until tomorrow.

I am on the clock 24/7. She could be at respite, school, the hospice, anywhere, but I need to be ready on a moment’s notice. I am like the 4th emergency service… but to just one person.

I miss the camaraderie of office life. The brew runs. The pointless “this could have been an email” meetings. The social aspect. Even back then, I didn’t identify myself strongly with my work.

Whilst I was passionate about doing my job well, it didn’t define me.

And yet as a “medical parent” or whatever I am; this seems to be my whole life. I think non stop about the next Amy related thing I need to deal with.

I think constantly about advocating and what I can do to raise awareness of accessibility and make a small, positive difference in what can sometimes be an incredibly frustrating world.

I must remember that above all of the admissions, admin, phone calls, appointments, meds, therapies, interventions etc I am also loving girlfriend, nature lover, animal lover, rock music lover, gamer, coffee enthusiast, pizza lover, tree and plants lover, reader, writer, podcast addict.

I am so many things. I am caring, anxious, a bit exhausted, a bit silly, an overthinker, a rambler, a bit of a complainer (sorry!).

Don’t lose yourself

Behind the role of nurse, doctor, physio, dietician, speech therapist, etc you are your own valid, amazing, hard working person.

Amy is determined, hard working, feisty, cheeky, clever, funny, caring, sweet. She is so many things. She is a nursery rhyme lover, lover of the outdoors, lover of songs, lover of toys, lover of interaction.

She is all of the superlatives – I am biased of course. She is complex and not just in her health. She is not to be ignored, not to be written off, and just as important as everyone else.

So yes. You may look at us. You may pity us, empathise with us, stare at us, or maybe just outright not understand us. But we matter, we are important, we contribute, we are valued, we are a multitude of things.

We are not what we appear to be on the surface. We have many layers. We are all complex. We are all human. We are all fighting for our place in this world. We all want to belong and be equal and accepted.

What I’d tell my past self

I recently supported an old friend through some worrying hospital tests for her child. They were similar to ones we’d gone through for my daughter who has a rare and severe form of epilepsy and a learning disability. I found myself offering reassurance; not that everything would be ok with the tests (we did not know that); but that she would cope, whatever the outcome.

In the early days of my daughter’s diagnosis, I remember thinking I would not be able to cope with parenting a disabled child. That was when I was imagining what life may be like and what we may be dealing with. In fact, the day to day reality has probably been even more extreme and challenging than I could have imagined. Perhaps the most surprising thing then, is that we are ok.

Life is good, we are happy.

It can be hard for anyone not in the SEN world to imagine that a life with daily seizures, hospital stays, emergency ambulance trips, cognitive regression, and some seriously challenging behaviours to manage could be a happy one. But our life is happy. Sometimes I find myself looking at other families, families who do not have a disabled child, who on the face of it have the ‘perfect’ set up and still find myself surprised that they seem no less stressed than us, and no happier.

I now know why; it’s hidden in something that those in the non-SEN world will never get to experience

In our world, we get joy, happiness, elation even, from things that others wouldn’t even notice.

. I find myself walking to work with a spring in my step as my daughter has not had a seizure that morning; I call my husband in excitement as she just signed ‘home’ for the first time since losing her speech; one of our fantastic carers arrives and we have a giggle about something. Many things I used to worry about don’t get a second thought now.

I remember reading on a parenting website in the early days, a comment from someone that said having a child with a disability made them no less happy. I thought that was nonsense, although tried to take some comfort from it. I get it now. I feel lucky to be in the same position.

Here’s the bit where I say I wouldn’t change a thing. But I would. I’d kick epilepsy to the kerb and make sure my daughter never had a seizure again. But the rest of it, the rest of the alternative life, my daughter’s incredible energy, happiness and carefree spirit? That I wouldn’t give up so easily. Nor the person it has enabled me to become. 

A bus driver, a life lesson and a random act of kindness

My ten-year-old, Jenson, adores buses.  A day does not go by without his bus obsession cropping up in some form or other.  He will happily watch buses on YouTube for hours on end.  He has bus-themed reward charts at school and home.  His teachers use bus numbers to teach him mathematics, and ‘creative’ bus advertising to help with his reading.

Of a weekend, we can often be found in our local high street, bus spotting, bus riding, hanging out at bus stops and talking to bus drivers.  While his younger brother and dad spend every weekend playing football and riding bikes, he and I spend most weekends on, or around, buses.

Last weekend was no different. 

Jenson and I were hanging at his favourite spot in the high street, deciding whether to keep watching or to take a trip.  A new favourite of Jenson’s, the number 23, pulled up, and the bus driver got off the bus to take a short break. 

He was one of those people who as a parent, you immediately feel comfortable around, he engaged with Jenson and chatted about buses.  He then invited Jenson onto his empty bus to ‘test the bells’ to which Jenson happily obliged, followed by a sit in the driver’s cab.  Jenson was thrilled, as was I. 

The date was Sunday 13th November, and that morning, the local community had organised a Remembrance Sunday parade down the high street, incorporating the two-minute silence.  The driver asked me if we had just been taking part, and I answered no. 

I explained that Jenson finds it difficult to stay silent; he can’t process the instruction, and doesn’t understand the gravity of the occasion.  Therefore I tend to avoid such occasions, for fear of drawing negative attention due to his inappropriate behaviours.

The bus driver then really surprised me, with the incredulous look that came over his face, and his words that followed.

He exclaimed “What!! Why not?!”.  I was taken aback, and attempted to repeat what I had previous said to justify my reasons.  He persisted: “This is crazy!”. I must explain at this point, that despite his terse and direct words, our new friend was clearly a gentle, caring man.  Although he was challenging me, his intentions were clearly borne out of a belief in equality and fairness, as was demonstrated by what next left his mouth. 

“Who cares what the world thinks?  The world needs to learn more about differences.  Who cares if he is not silent, just because they tell you that you should be silent?  The world needs to understand and embrace differences.  The world needs to be more understanding, and they need people like you and Jenson to show them”. 

Feeling a little like I was being told off by the headmaster, I was at a bit of a loss as to what to say next.  I sheepishly concurred that I agreed with him, but that I still have trouble being brave enough to put this into practice, due to many examples of negative attention that we have attracted on past occasions in similar types of situations.  At this point, it would have been easy to reflect and conclude that no-one understands a day in the life of a parent like me, unless you walk in those shoes.  However, there was something about my new bus-mate today, that made me stop and think.

Dissatisfied with my answers, the bus driver continued to give me a stern talking to; encouraging me to never mind about other people.

His tone was kind, but firm, with sentiment and compassion. After about five minutes, his break was over, and the next thing I knew he was ushering us onto the bus to sit down at the seats nearest the front.  He started the engine, shouted “Let’s go for a ride”, and we were off!  Before I had a chance to resist, we were taking a 20 minute round trip to the terminus and back.

Unfamiliar with such random acts of kindness, I was taken aback but I soon relaxed into our impromptu journey, with the driver chatting away, and Jenson chatting back, much to the amusement of the other passengers. I took a moment to savour the pleasure and excitement that Jenson was experiencing, and I found myself speaking more loudly and excitedly to Jenson, as we chatted about landmarks that we were passing.  I was deliberately heeding the bus driver’s advice about throwing abandon to other people’s perceptions.

Rather than hush him, and keep my voice low, I did the opposite, and it felt great!  

I noticed that Jenson was responding to my more relaxed demeanour, and my ease was having a very positive effect on his own behaviour.

On our return to the high street, we had another lovely chat and I learned our new friend’s name, and he told me a little bit about his family. 

We have since met up a few times with Laslo, and taken a trip on the number 23.  Jenson is happy that he has a new friend and I am happy to have experienced a random act of kindness that has definitely lead to a positive change in my own behaviour and outlook.

In Laslo’s words, “The world needs to be more understanding” and “Who cares what the world thinks?”  I am now trying to adopt this mantra every day, thank you Laslo!

Across The Years: Housing for your Child with Special Needs

Most of my blogs are geared toward those of you who are just starting out on your journey with your child/children with special needs. This one is no exception and may be one of the most important, I feel, so far.  

When I was young and found out my baby had some things wrong, I was devastated. No one knew how things would progress for her. I was trying to live and enjoy my baby, but there were so many things to consider for her life and her future. One of those things, which is one of the most important, never occurred to me….her housing.

My daughter and I would have benefitted greatly if someone would have been in our life then to tell me what steps to take for future housing. You see, at age 23 most of us are not thinking about 20-30 years in the future. Especially when we are scared and not knowing how to live in the current moment.

I told my daughter I was having some difficulty coming up with a blog for this month, and she told me to write about “our house”. She is speaking about our future home that is as real to her as it is here now. She and I both believe in our future home; we just must wait.

As Emma got older, I started to attend many educational seminars to help me feel more confident in making good decisions for her. I am a single mother and did not have anyone to bounce ideas off. I believe these things are even difficult for married couples who have each other to talk things through. These seminars are what gave me what I feel is the best plan for my daughter’s future.

These are true stories of other parents who helped me tremendously.

The first parents I heard from decided to move out of the family home that their son had always lived in, and they moved a roommate in with him. Then there are other families who bought homes to provide safe housing for their disabled children. They also put roommates in the home. I know another single lady who started a home of six men, one of whom is her brother.

So many ideas were available to us other than a group home! A group home in which I would have no say or control over who comes in or out, who lives or works there. That does not feel safe to me.

Right before COVID, I received a decent mortgage approval that would have provided us with a good home. Enough to give her her own place with at least 1 -2 roommates. Emma loves this idea.

This is very much her dream as well as mine. Unfortunately, as we all know, the housing market has not been doing well for the last couple of years, which has put our home buying on hold.

I have faith, and I do not want anything God does not want for us, but I feel this is a calling in my heart. I believe this is still yet to come. I want to make sure Emma is in a nice home, with nice roommates, and with proper care while I am still young enough to make sure of all of this. I would like to wean away and give her her own life.

There is obviously much more to this process and many things to plan for and consider.

This blog is to help all of you awaken to what plans you need to put in place for your child. Especially saving money so you know your child/children are well taken care of.

Starting these things while your child/children are at a young age can, and will, make a huge difference over the years. If you follow a strict savings plan for these specific needs, I can promise the money will add up very fast. Starting at your child’s young age will make a major difference in their life, as well as take a weight off you. That weight can be very heavy at times.  

It is our duty as parents and caregivers of other humans that cannot take care of themselves to make sure they are taken care of. For my daughter and me, I put God first because I know He will take care of everything for us. He always has and He always will.

I am trusting in God’s timing and very excited to see what the future holds for us. I hope this helps you so you can plan a future that provides peace in your hearts.

‘But he looks so… normal…’ and other unhelpful comments

Uuugh. It hasn’t happened often in recent years (the wheelchair/oxygen cylinder/suction machine kind of give it away) however it was a phrase we heard a lot when he was little. How exactly are you supposed to look with life-threatening epilepsy might I ask? Even now photos can be really deceptive. 

The photo on this post is an old one, but a favourite – he was so, so proud of himself for managing to sit unsupported next to his Dad. To look at him here, he looks like any other happy healthy kid.  In truth, this, like all photos, is a snapshot in time – a moment when he found his balance perfectly.

It lasted a matter of seconds, you can’t see his Dad’s hand carefully placed behind him ready to catch him as he lost that balance, seizures rapidly took over and he slept much of the afternoon away, protected by our friend’s wonderful dog (who along with us didn’t leave his side).

Then there’s the other extreme

. Those who see my boy and fail to see the clever, cheeky boy who can communicate, is a demon at boardgames, loves swimming and LEGO… instead focusing on the issues.

They see a disabled child, and miss all that he is and is capable of. It is entirely their loss as he won’t give them the time of day… he has a slightly evil habit of kicking people who talk over him in the shins then looking as innocent as possible. Can’t say I blame him. Assumptions about his abilities are a plague my son faces almost daily but he will never face them from those who love him

The only thing that will limit him is his imagination.

His most loved Aunty nicknamed him Spaceman (he loves stories about space, rockets and flying amongst the stars), his teachers continue to push him to achieve things he currently finds difficult and we will continue to cheer him on.

One of the greatest disservices anyone can do to another person is to write them off before they’ve even had the chance to try, able bodied or otherwise. Children with disabilities have enormous potential just like all others, they just need someone who believes in them and who will give them the confidence to spread their wings and learn to fly.