Jo's story

Jo shares her journey caring for her son, Jacob, and how lockdown affected her family 

Jo and family

I am Jo and I grew up in Dorset. From the age of fourteen I developed a passion to work with people affected by disability. I did this by volunteering at my local Mencap/Gateway Club and volunteering on holidays for people with disabilities, which I thoroughly enjoyed despite the challenges and hard work!

In 1993, I left home to start my nurse training in London. I qualified as an Adult Nurse and soon realised my passion lay within the area of Neurosciences, so was delighted to start working at Atkinson Morley Hospital in Wimbledon.

However, my main job is Mum. I have a son, Jacob, who is turning eighteen in December this year and my daughter, Megan, who recently turned eleven. My husband, Nathan and I have been married twenty years this year! We also have a Labrador puppy called Molly who completed our family last year.

If you look at my experiences you could perhaps take the view that they would put me in good stead to cope with the challenges that lay ahead when Jacob entered the world.

Our gorgeous son was born, dramatically, via an emergency caesarean section on 19 December 2003. He struggled to feed and was very floppy. From the second day of Jacob’s life it became apparent from the number of doctors visiting our bedside that things were not quite as we’d expected.  I remember my bubble of euphoria of having Jacob started to evaporate. Our little bundle of innocent gorgeousness with a full head of dark hair was scrutinised. My maternal instinct had kicked in, but the nurse in me was on high alert and I started to feel my heart sink. This was the beginning of a rollercoaster ride that our family had not agreed to and we are still riding it nearly eighteen years later.

It became apparent that Jacob was seen as an ‘interesting case’ because of his ‘dysmorphic features’ – a term I have always struggled to accept. No one wants to be that ‘interesting case’ but it looked like our new-born baby was fast becoming one. I remember shouting in my head “how can they say this about our beautiful boy?” I just wanted to bundle Jacob up and get home as quickly as possible, but it was a struggle to feed him, so I knew I had to hold tight and work with the team helping us. I had a wonderful midwife called Kelly who took us on whilst the maternity unit was incredibly busy. She spent time with us and ensured we were moved into a side room, which I was grateful for, but again it was an indication that things were not right, and I felt myself start to grieve for the expected ‘normal’ I thought we would have. Kelly assured me that we deserved VIP treatment and reminded me that I was recovering from a very difficult labour and surgery from having a caesarean, something I had placed on the back burner as the rollercoaster had shot off along the first rails.

Jacob as a baby

Once the chromosome results came back, we were informed that he did not have the life-limiting condition called Edwards Syndrome that they had convinced us he had. I realised then that it was time to take stock. My husband was devastated, as were the rest of the family, but it had made us all closer. Both sets of grandparents found comfort in each other in the hospital canteens and waiting rooms.

We came home in the car on Christmas Eve 2003 with Daddy driving and me sat with my Mum, Granny, in the back of the car. I remember seeing the Christmas lights and ‘Your Song’ by Elton John came on the radio as I held my son’s little hand.  The lyrics “how wonderful life is now you’re in the world” have stayed with me. I remember it during the most challenging times, and it reminds me how grateful we are that Jacob is with us and he came home. I soon learnt that despite all the training, knowledge, and experience nothing can prepare you for being the mother of a disabled child.

Now, as he is approaching adulthood, I am again learning and discovering it doesn’t matter what you try and do you cannot do enough to feel both strong and prepared for the challenges that this can bring. Physically, Jacob is growing into a very handsome and strong young man. He still has low muscle tone, long sightedness, glue earcleft palate, and developed epilepsy as a baby. He also has a cognitive level of approximately two years. A surge of testosterone means he is now incredibly strong and as tall as me. A combination of therapy orthotics and sheer determination has ensured that he has remained mobile. His inquisitiveness, determination, love of life, cheekiness and exuberance has placed him in good stead. Although he is non-verbal, we certainly have some interesting conversations. He wears pads and needs full care for challenging continence needs. Despite these difficulties and numerous investigations, hospital appointments and assessments, no specific diagnosis has been found apart from autism, epilepsy and a severe learning disability.

When I observe Jacob, I reflect that life to him is about being at the best party ever. His motivation is to ensure it is filled with fun, laughter, high energy, good food (especially if it includes macaroni cheese and cheese and onion crisps) music and dancing. It can get even better if he is able to indulge in his obsessive compulsive disorder (OCD) trait of autism. Shutting all doors, keeping lights on, making sure things are clear and tidy, which can mean emptying cupboards and throwing everything out of windows into the garden. He has arrived in heaven when he is able to go swimming, bowling, to the theatre, help with cooking or go out for a meal.

In February 2020, I was devastated to find out I had been made redundant from my role within a residential home for adults with physical and learning disabilities. I was given the opportunity to be redeployed within the restructure of the organisation to work as a nurse. Sadly, the hours could not fit in with my role as a carer for Jacob and would bring me over the threshold to claim the Carer’s Allowance. I had worked minimal hours in order to meet the needs of caring for Jacob, but as we could no longer find or pay for specialised childcare I’d had to look into claiming benefits, which included the Carers’ Allowance. Now Jacob is older, he cannot go to mainstream provisions as his needs are more specialised and so much more expensive. So, I accepted redundancy and felt quite despondent as to how I would be able to maintain my nursing registration and find a job that would work within our unique family needs.

It was my health visitor in the early years of Jacob’s life that emphasised the importance of working, and looking back I can see how valuable her advice and support was. We were one of her last families she visited before retirement and she shared her wisdom as to how important it is to maintain a separate identity from being a mother/carer. Still to this day I have been shocked at how difficult it is to do this – not just because of the constant juggle of life, but because of the lack of support, legislation, and bureaucracy. As stated by Carers UK: “The system can be bewildering. The emotions can be shattering.”

Jacob with his walking frame

We are immensely proud of Jacob, but no one can prepare you for the battles that we face constantly. Only carers will know and understand that the role brings isolation, exhaustion, and despair amongst a range of other emotions. However, that changed when the world started to experience the consequences of COVID-19. As restrictions and lockdown took hold, I strangely found myself feeling less lonely as a carer. It was strangely comforting knowing that society as a whole had joined the rollercoaster of emotions that I felt for the last 17 years. Unfortunately, these experiences of comfort found through solidarity only lasted a short time.

Lockdown life has resulted in many people’s lives and interests having to change, but Jacob’s reaction to this made us quickly realise that when the rationale for change does not make sense to a person, how much more difficult this can make the consequences of lockdown. Along with all schools and colleges, Jacob’s school for severe learning disabilities and autism closed which meant no respite in the day, care support, education or therapy. He could no longer attend his after-school club on a Thursday at Mencap. He could not go to his overnight respite provision which had only just been increased by two nights a month by our local authority, and our family and friends could no longer visit. This is when we realised who our real support networks are. Jacob could no longer do activities that he loved such as swimming, going to the theatre or the cinema. We learnt very quickly to be grateful for what we had such as good weather and a garden and we got through each day hour by hour. We tried not to think too far ahead and only dipped in and out of the news headlines. I learnt to make a mental note of anything that cheered us up on YouTube.  Soon we became reliant upon shows and films such as ‘The Muppets’ and ‘Minions’. Watching these would get us through some of the darker days, along with some impromptu kitchen discos, wrestling and playing with Molly dog! Although the arrival of Molly dog was planned long before the days of COVID-19, her timing could not have been better. She brightened up 2020 in words we cannot describe.

It is not often openly talked about how being a carer can affect your identify and impact on your self-esteem. You would think that being a carer is one of the most worthwhile and fulfilling roles to have, so why should it affect how valued you feel as a person? When both parents are together (something I have often been told is rare within families of disabled children), it can be difficult for roles to be identified within the family unit. The bread-winner is also a carer as they try to offer support to everyone. The full-time carer feels guilty and upset that they are reliant on the bread-winner to help them, so they don’t crack – especially when they are not in a position to contribute financially. In our case, my husband Nathan was torn between supporting his severely disabled son, young daughter, and wife as well as holding down a full-time job, meaning all financial pressure weighs heavy on his shoulders. As the full time carer, I miss the opportunity to have an identity outside the family home and freedom to come and go. How can you expect your partner to help when they are tired from a long commute, let alone a full day’s work? However, a particularly challenging day with no break, recognition or thanks can make a commute to work start to look appealing. Thoughts such as “at least you get time to read a book and sit down” start looming.

Lockdown created a different world where if you were lucky and your job meant you could work from home, family life changed hugely. My faith was restored when I started working on the Helpline at the Brain & Spine Foundation in June 2020. I was able to put my nursing experience to good use – something you would think in a middle of pandemic would go without saying! Through this role I have been able to use my nursing skills and knowledge of neurosciences to help provide information and support for people living with neurological conditions. It is a privilege to have found a position where I can offer time and expertise to people to discuss their worries and concerns. This is something that is not easily available in a clinical setting. My unique family has allowed me to share empathy and understanding to people who been affected by neurological issues. I find this very rewarding, and it is very fulfilling to be part of the Brain & Spine Foundation team. The job also means that I can carry on caring for our children within the home. Nathan and I currently work remotely and have a better work/life balance. We are in a much better position to support each other which has certainly contributed to us surviving the last year. We want this to continue but are aware that our lives will continue to get harder as Jacob becomes older. This has escalated due to the severe shortage of respite care and social service support. We continue to experience delays in the recommencement services of our “agreed” package of care provisions that we fought so hard to have in place. Jacob’s special school do not currently have the resources to ensure their children can receive a full week of schooling. We are fearful that Jacob, who will be eighteen in December, will need to go into full-time residential care. We have reached crisis point as we have no care or support available.

I hope that through sharing my personal story it will help other carers become more visible and valued as we celebrate and recognise carers together.

Jo, Specialist Information and Helpline Nurse, runs Neuro Carers a group dedicated to people caring for someone living with a neuro condition. You can sign up to the group here.