Chris Jenkins, Author at Firefly Blog

Reaching out to your employer for support

I am fortunate that my son Joey is so well thought of by my family, friends, and colleagues. I said in my last article about reaching out. This one is about challenging your energy in the right areas. Joey is blessed that the people who hear his story reach out and say, ‘hey how can I help’, ‘what can I do to make life that little bit easier for you’.

Having an understanding employer

The company that I work for have supported me through many difficult times. When my HR manager, Becky reached out to me and said she wanted to help fundraise for me and Joey I was thrilled. My work has been flexible with me as they understand that I need to attend multi-disciplinary meetings, hospital appointments, meetings about Joey’s progress in school and dealing with the exhaustion of caring for Joey and working full time.

Having a strong support network

They also know I have challenges being a dad that has no government support and is often lost in the system. But they don’t ignore me, they are there to support me and that means the world to me and my wife Ceri (Joey’s step mum). My line manager has also been there as great support and the owners of the business have just been brilliant. I couldn’t wish for a better professional support network. They have been there for me every step of the way. So, please do reach out to your employer and discuss the journey you are on. They won’t know the difficulties if they aren’t aware of them. As the saying goes, a problem shared is a problem halved.

Becky has said to me despite her own health issues that she wants to help Joey. It blows my mind that even someone going through a hard time wants to help and support Joey, it is just amazing. It just goes to show that there are some truly wonderful people in the world. So, Becky is running two half marathons to help me raise money for Joey’s Day to day needs, equipment, and sensory play.

A problem shared, is a problem halved.

The main takeaway from this blog, it is that if you are working and finding things difficult personally, reach out and speak to your employer. Also don’t be afraid to ask family and friends for help. They aren’t mind readers and will be unable to help if you don’t share your troubles. And then, if you are as fortunate as me, someone like Becky will step in. They will give you hope about how great people can be. It is, of course frustrating when the support needed for Joey isn’t fully available. But challenging my energy into positive fundraising is so more worthwhile.

Reaching Out For Help

Being the parent of a child with additional needs, while trying keep on top of everything can be very difficult. I have recently been involved in setting up a ‘lads and dads’ group. As talking to others, reaching out and getting support is so important in anyone’s life. Unfortunately, I don’t get any financial support, so I must do what I can to fundraise for his day-to-day needs . Sometimes this is hard, but I’m lucky to have a group of friends that I can lean on for support.

Challenges I face

Having a child with severe disabilities comes with lots of equipment. Boxes of medicines, feeds, incontinence pads and much more that is required, to make sure that their life is a fulfilled one. The challenge I faced was that my house was becoming more and more cluttered with these items. It was difficult to find space where I could put all the things that I needed to for my son Joey. Ideally, I needed a storage unit that could house all of Joeys equipment.

Like I said before, sadly I don’t get financial assistance through any of my son’s benefits. So, I reached out to a charity, Tree of Hope and they helped me fund the storage shed! I managed to acquire one that fit perfectly at the side of our house. However, I struggled finding the time between working full-time and being Joey’s carer to build the shed.

Reaching out for help

So, I turned to the lads and dads’ group. A group of people of which I am a proud committee member, stepped up and said, “don’t worry we will help”. So, 3 guys, who little more than 2 years ago were total strangers. Came around and built this for me in their spare time, knowing that it would be life changing for our family. It may sound silly that a storage unit could be life changing… but for us, it isn’t. It has freed up room in the house and in my son’s room.

The main takeaway point from this, is please don’t be afraid to reach out. If there are local support groups in your area, please contact them. And if there isn’t, be a leading force in your community and set up a group for people to help and support each other no matter what you’re going through. I am lucky to be part of such a group who look out for me, my family, and my son. And I know they will be there to help if I need anything in the future.

5 Things We Can Do To Make Life Easier

Christmas seems a distant memory and the throws of being a carer and holding down a full-time job is in full swing. It feels like Groundhog Day with Covid still haunting us all and our every day lives. But there must be some positivity, right?

Yes, there is! I, along with lots of others need to look at 2022 in a more positive way – what are the little things that can be done to make life easier and more bearable. I am going to break this down into five things that I hope most can be done by all of us.

Go for a walk

Even if it’s a short 15–30-minute walk with your children. I enjoy taking my son Joey, who has a life limited condition, for a walk whether this be around the local area, by the sea – he loves the sound of the sea and feeling the wind on his face makes him giggle. The little pleasures that we take for granted can add so much to a child’s life.

Get in the garden

I spent 20 minutes in the garden in Joey’s ppod, wrapped him up warm and just listened for the sounds of the natural environment whether this be the sounds of birds, the odd plane going overhead or the beep of a car. The main thing is we got some fresh air and he loved it.

Spend time with the family

Family time is so important whether it be a quick walk with Grandma or a visit from the cousins/aunties/uncles/brothers/stepbrothers and sisters/ step mum. My aim is to try and get that interaction up and organise some nice activities to look forward to – in the summer that could be a trip to the beach and in the winter an early showing in the cinema or a walk in the country park. We went to see Clifford the big red dog recently and Joey and his brother Jaxon had that time together with me, which is something that they don’t get enough of.

Being in the now

I am desperately trying not to think about the future and what that holds as it can be scary. Living in the now is my goal – what can I do now to live life as positive as I can with the challenges we face and spend the time with Joey loving life and laughing more. He is a wonderful boy whose smile brings much joy to everyone he meets.

The Next Junction

In my last blog I talked about how people step up when times get tough and how others unfortunately fall by the wayside. I love the quote from Michelle Obama “when they go low, we go high” – I call this blog the next junction as for many years I’ve had to motivate myself every day to get through the tough challenges that were faced by my son and my family.

Whether that would be going to work or heading to the next multi-disciplinary meeting and have more support withdrawn. Can you believe a senior nurse not understanding my son’s condition saying, “It’s just epilepsy”. Epilepsy so severe my son can’t do anything for himself, epilepsy that has robbed him of any sort of normal life. That nurse who looks after the care team really didn’t get the turmoil in our lives and the unknown future we have. Another senior member of that team also asked can Joey call out for help in the night… my son can’t talk by the way or communicate for help!

This is what happens when health boards change and don’t understand complex needs.

I would speak to my bosses in work who would look on in horror as the world that I was part of was so far removed from normality. I would bounce from speaking to a customer to dealing with how do I get my son the right standing frame or the right equipment for the house. I would be met with the disbelief of my work colleagues who would say I don’t know how you do this, how is this right, why does this not get provided.

I can do this because of my wife, my family and friends. My wife Ceri (Joey’s step mum) has been an absolute rock through this, seeing me go through the battles for my son and literally picking me up off the floor when things just don’t go the way they should for him. It is a world that she has entered and despite being utterly shocked by what Joey and I go through she is there every step of the way.

As a parent who has a special needs child and one whom represents a non-verbal child you become their voice and no matter what, backs against the wall you fight for their every human right. No matter what is thrown at you, you dust yourself off and go again. The energy required is something I would never have thought possible. I often use the words “they didn’t teach this in school”.

I have a smile on my face when I say this because I just didn’t realise this world existed just 7 years ago and each and every one of you who fight for your children’s needs over your own. I have so much respect for you. What I would say to those who are feeling defeated, please keep going. Take a break from some of the battles and when you muster the strength go again but please do talk about it.

Despite having limited support from the disability social team and the agencies that hide behind red tape and bureaucracy I have recently found support from Bridgend carers who genuinely care about me and my blended family and I can’t thank Davina, Karen and Joanna enough for their emotional support in the past 12 months and looking out for us as a family. They care about what my daughter is going through, what my stepson and stepdaughter are going through and also provide emotional support for me and my wife. I have had counselling over the years to deal with life’s challenges and I am proud to say that this is ok, no one should make you feel like it isn’t.

If you need support then that’s absolutely fine. It’s ok not to be ok.

Recently the grocery aid charity has kindly given myself and my wife (Joey’s wonderful step mum Ceri) a break in Newquay camping for a few days. Far removed from New York where we would love to be but to have that support for a few nights break was lovely for us to re-charge from a difficult year. Despite the lack of recognition of what Joey’s needs are by social services and some health professionals there is a network of people out there that can help outside of these – please do remember that if you are in the same situation.

I reached out and wonderful people stepped in. I have had people climb mountains, run marathons, make blankets for raffles and other raise money through their companies charity because they want what’s best for Joey. Ty hafan the children’s hospice in Wales have also been a great support, what a wonderful place it is and staying there for one weekend a year is one of my highlights because the people there care for my son’s welfare.

My friend Markos Orphanides read my last blog and said what can I do to help – I know I’ll run an ultra-marathon to raise money for his day to day needs and he is doing it next month! Another friend Neil said I am here to help – let me see what my company can do. I have had friends raise money for my son’s ppod and a company called gallaghers help convert his room to be more disabled friendly.

I can only thank everyone who has helped me when my back has been against a wall. Liz, Drew, Polly, my whole family, Tree of Hope, Stuart, just everybody that has helped me there are so many more names I could mention over the years. Joey, myself and my family just say thank you from the bottom of our hearts. You give us light when sometimes it can seem so dark and remember the next junction could be hugely positive.

Living Without Care & Help

My son Joey is 7 and has medicine resistant epilepsy which is controlled by a VNS (a pace maker for the brain) he has had a fundoplication to protect him from aspiration, is peg fed as he can’t swallow safely and is on anti-epilepsy medicines and movement disorder medications. He has cortical visual impairment and severe global development delay. Joey has an unknown condition that is life limited.

Up until last year Joey had overnight care and had a direct payments package – now despite his serious condition he has no support from social or from continuing care. His condition is still the same but the health board changed and despite having a life limited condition and medicine resistant epilepsy (he has been on over a dozen anti-epileptic medicines in his life has never walked, talked or being able to do anything for himself), care was wiped away, nothing not even one night a week.

I have shared care and have had many battles to have my son in my life – this is still one of them.

Juggling a full time job and then caring for Joey overnight when he is with me is incredibly tough and Joey also doesn’t have access to his disability living allowance when is with this side of the family either. I try to sleep next to him on a put up bed when he is with me and monitor his heart rate with a pulseguard which alerts me to seizure activity so I can be treating him as soon as I can. His condition is constantly changing and he is need of a respiratory study now to see why he is often gasping for breath at night. As you can imagine my sleep is deprived massively so I function on little sleep as I have to be on high alert.

Joey nearly passed away twice early in his life and his condition was so bad great Ormond street said to palliative care him and he wouldn’t be with us very long. There was no cure, no magic formula, he was the unknown, no-one like him in the world and they just gave up on him. But his neurologist in South wales didn’t give up he said one last roll of the dice and he got sign off for the vagal nerve stimulator to be fitted.

That was when he was just 3 years old, he is now 7 he has started to babble, bash things and is a cheeky little chap. Unfortunately he can’t do anything for himself and requires 24/7 care. His seizures are mainly controlled by a VNS and despite having between 50-100 seizures a day – mainly ones you can’t see his quality of life has improved, he is so much more aware and interactive with the world…

Despite the challenges there are huge positives, a wonderful community, my friends, my wife (Joey’s step mum), my whole family, my workplace, my hospice dad mates they all love Joey and go the extra mile to make sure he doesn’t miss out, despite all the odds against him and the odds against shared care.

Dads just aren’t recognised in the system and separated dads have to fight every step of the way.

Joey gets no financial support from his disability living allowance so my friends and family fundraise to make sure he doesn’t miss out. It is important to reach out and share your feelings and gain support. I am part of a lads and dads mental health support group whom have supported raising money for Ty Hafan and are also just a message away from listening and supporting me when times are tough. What keeps me going is the smile on my son’s face when he sees me and the impact my son (against all odds) has on everyone who meets him. He is my hero.

Good people step up massively in your life, I have been in touch with people who I lost contact with from school because they want to help my son have the best life. Get support emotionally if you can, it took me awhile but it has helped me open up and try and deal with the situation. I still get down days but who wouldn’t.

I have had to grieve for what my son could have been but celebrate who he is, an amazing boy “Joey the superboy”. I keep a Facebook page where I capture memories for all of the family and support network because you just never know when the last memory could be. I love Joey with all my heart and whatever it takes I will make sure he has the best possible life.