When my eldest son James started school, my youngest Harry was a baby. James has a severe learning disability and complex needs. He was to go to a MLD school about 3.5 miles away from our home. There was no question that I would take him to school myself.

Driving James to school was just part of mine and Harry’s daily routine. As he got a little older, I remember how we sat in the car waiting for James at the end of the day, Harry had learnt all the company names on the mini buses that came into school and we’d play a game, which of us could correctly guess the next bus to drive into the gates.

In Sept 2004 all that was to change. Harry was to start at the local infant school himself. It was just a 10-minute walk from our house. In the interim period James had changed schools. He was now attending a SLD school approximately 2.5 miles from home.

I owed it to Harry to be there for him.

It wasn’t only that, yes, I wanted to be the one to walk him to school just like his friend’s mums did. In In all honesty, I wanted it for me too, not only Harry. It had all been so different with James.

So, when Harry started school that September, I experienced the normal emotional turmoil that parents go through. But that year I had it doubly hard as for the first time James had to go off without me on the school bus. I remember that first morning anxiously putting him on the bus with the driver, escort and children we had never met and waving him off. He was absolutely fine. It’s often us parents that find it harder.

I loved mine and Harry’s little walk to and from school.

It was 10 precious minutes just the two of us. He’d tell me all about his day. This was a whole new experience for me too, chatting with the other mums in the playground while we waited for the children at the end of the day. It was all just so normal.

Fortunately, James’ morning pick up time was early enough that I could get Harry to school on time but the end of the day was more difficult. James would arrive home at just the time I was meant to be picking up Harry. James could walk but only slowly and so I’d wait with his wheelchair and as soon as he arrived, we’d rush off battling our way through the oncoming pedestrians to pick up Harry. Very often we’d arrive to find Harry sitting alone with his teacher long after the other children had gone home.

The teacher was lovely but I felt so awful being late for Harry.

We continued like this and then once well established at Junior school, which was even closer to our house, Harry could go alone or with a friend. Until that was, Harry started secondary school when it all became much more difficult again. Harry’s secondary school was further away and he had to be driven there as the local public transport wasn’t up to much.

For the next few years, I was very lucky that Harry’s friend’s dad would give him a lift in the mornings. By now James used to go straight to a carers house for a couple of hours after school just two days a week. On those days I’d pick up Harry and his friend. On the other days he’d get a lift home with his friend’s mum. They helped me out so much during that time.

Aged 19yrs, James left school and went to day service. Harry left school a couple of years later and went to college even further away, again with no way of getting there himself and so it all began again…back on that merry go round!!      

Life has changed considerably for my family in the last three years. At the end of April, it will be three years since my then 24yr old son James moved into supported accommodation.

It would be fair to say that since James’ birth, life has been an emotional rollercoaster. With the sleepless nights, open heart surgery, stomach surgery, other minor operations, behavioural issues and seizures to name just a few of the life events we’ve had to negotiate.

However, from the very beginning of the process of looking at a long-term home for James through to moving in day (and some-time after) I shed more tears than I had done at any period of my life.

James moving out was the most difficult decision my husband and I ever made.

When James was very young and the future seemed very far away, we discussed that when James reached his mid-twenties, we should be looking for a permanent home for him. In the end it actually came about by chance because a supported accommodation house was being renovated near to our house.

To cut a long story short, the accommodation on offer there wasn’t suitable for James but the lady who manages the company who run the home invited us to look at another of their properties a little further away. Actually 22 minutes door to door from our house to his.

A couple of months later after several visits to the home and many meetings with all the agencies involved in James’ care, we had to give a definitive yes or no.

The flat we were looking at in a communal home was in great demand. Due to covid, meetings were being held online. One August afternoon in one of those meetings I stated that yes, we wanted to proceed.  I was home alone and at the end of the meeting I turned off my laptop and I cried…and I cried some more….and I didn’t stop for months.

It’s a complex process to get all the funding in place not to mention the whole transition process itself for James and preparing his flat too. It was complicated by covid and the actual moving day was pushed back twice due to lockdowns. I really didn’t mind as it meant I got to keep James with us a little longer.

I will never forget how I felt the day I walked away and left James without us in his new home.

Of course, there have been some hiccups since James moved in. Nothing is ever going to be perfect but between myself and James’ staff we work them out. Life has taken on a new routine. We see James at least twice every week, he comes for tea on Tuesdays and we see him at the weekend.

I look forward to seeing James and enjoying quality time with him as I am no longer permanently exhausted. When he is at our house, I spend virtually all my time playing with him and he comes for regular sleepovers too.

What I do know is that I had total control over where James moved to. When I slip out of his life which one day I will, he will be secure in his home.

He will not be uprooted and moved miles away from everything he has ever known. I have seen this happen and this is what motivated me, this is what got me through those tearful difficult days. I did not want that for my son. When I am no longer here, his life will continue…….just without me in it.

There is a day to celebrate our siblings and our relationship with them. This year it is 10^th April. I have just one sibling. A sister. Two years older than me as I frequently like to remind her.

As I imagine is the case with most siblings, we don’t always agree on everything, we are our own people and have different views. When I reflect on my childhood though, I remember always having my sister to play with whether it be with our Pippa dolls on the lounge floor or going to the local park together.

As we got older, we’d go swimming or walk to the bakers to buy lunch in the school holidays. She was always there.

As teenagers we grew apart and had our own friends and boyfriends. As adults our lives took us on different paths and for some years my sister lived further away. We were in contact but each busy with our own lives.

Many years later and now in our (late!!) fifties we live barely a mile apart and whilst our lives are still quite different, we are probably closer than we have ever been.

I Have Two Sons.

My eldest James is 27 years old and has complex needs. He is non-verbal and has a severe learning disability. Harry is 24 years old. Their sibling experience has been very different from mine.

James was three and a half years old when Harry was born. Due to the severity of James’ developmental delay, Harry didn’t have a sibling to play with in the same way as I had. James wasn’t always able to do the things that Harry wanted to. There were some times when they were able to do things together that they both enjoyed.

I remember we had two child toy buggies. They would run around the house laughing and chasing each other. My door frames still bear the scars! Harry would stick cardboard boxes and yoghurt pots together to make instruments and James would think it hilarious and entertaining when Harry ‘played’ them.    

It wasn’t long before Harry’s abilities surpassed James’ and he wanted to play different games. What he wanted most was someone to play them with. We played with him of course when time allowed but it wasn’t the same as having playmates his own age.

When Harry started nursery and then infant school he loved to play with the other children. Such was his enthusiasm I think he often came over a little over zealous, even bossy and boisterous when in reality he was just desperate for them to play with him.

Once at secondary school, having friends back to our house could be difficult for Harry. James would go up to them and kiss them or sit on their laps. As a teenage boy Harry sometimes found this embarrassing then there was James’ meltdowns to contend with too, especially difficult for Harry when out in public.

Harry later joined a sibling support group at the hospice we attended with James.

This gave him the opportunity to go on days out with other children in his situation. Whilst he enjoyed them, I don’t think they really spoke much about the impact having a disabled brother or sister had on them. When James was 18 years old he could no longer attend the hospice so that finished for Harry too.

At times I felt sorry for Harry, conscious that his mates had their siblings to go and kick a ball about with or play their computer games whilst he had no one. The amount of time I spent looking after James severely impacted Harry. I wasn’t always able to take Harry to scouts or to a party because James was asleep in bed on his feeding pump. They may seem little things to other people but to a child they’re important when you don’t feel part of your peer group and the same as everyone else.

Many years on and the boys are now young men. James lives in supported accommodation. They don’t spend nearly as much time together. Harry keeps a listening ear on what’s happening in James’ world though, he has strong opinions and lets me know if he feels something isn’t right or James has been dealt a disservice. He will call me from work to check how James is if he is unwell or had an appointment. He’s not involved hands on in James’ care but he likes to know everything is ok for his brother. 

When I was pregnant with my first son, I was in a job I enjoyed and I had no reason to think that I wouldn’t be able to continue in that role after my baby’s birth. Other women in my workplace had reduced their hours when they had children and that’s what I had planned to do.

When James was born it gradually became clear that he was going to have some ongoing additional needs. We had no idea to what extent. That didn’t become apparent for some time. As planned, I returned to work part-time, just two days a week. I found a lovely child minder, a mature lady who had no other children to care for when she had James so she had lots of time to give him the attention he needed.

Leaving James was hard, he was so tiny. It was good for me to be back at work although sometimes I felt exhausted from the demands of looking after James and a severe lack of sleep. I was lucky to have a very supportive boss and staff team around me.

Uncertain Times.

Just a few months after my return-to-work James had to have open heart surgery and so I took a period of six weeks off to care for him. During the months that followed he began to have seizures and was regularly in and out of hospital having various tests and sometimes for longer admissions as he was failing to thrive. If James was in hospital, then I was always with him. I was at home or hospital more often than I was at work sometimes.

I was employed by Social Services in a Family Centre. I worked with families who needed some support with parenting their children, some had challenging behaviour, some parents had anger management issues or addictions. Sometimes I was required to supervise access visits and write reports and represent the county council in Court. It was varied. I did a lot of inhouse training in my role and had every intention of going on to do my SW qualification at some point in the future.

I enjoyed being part of a team at work. My time at home with James was often very isolating. My husband worked long and unsociable hours and I spent very little time with friends as their lives with their children felt very different from mine. Fitting in a trip to the shop was difficult enough between James’ two hourly feeds and bouts of vomiting and even more so when his seizures started too.

Then There Were Two.

My youngest son Harry was born when James was three and a half years old. It was then that I made the decision to remain home full time. Both boys had significantly different needs and finding appropriate childcare was going to be challenge and not financially viable. I missed my colleagues, some of whom have become long term friends but my priority was very much my boys.

As the years went by I never did return to work. James’ needs were complex and we were always at medical appointments, assessments or meetings. For many years I felt that my only identity was as ‘James’ Mum’. I didn’t resent it because I’m very proud to be known as James’ mum.

As James got older my roles of mum and carer blended together. I was neither just one or the other, I was both. There may have been times when I felt I’d lost something of myself along the way but given the same situation now I’d make the same choice all over again.

When you look back time goes so quickly, my sons are both now young men 24yrs and 27yrs of age. I wouldn’t have missed a moment of that time I spent at home with them…..maybe a little more sleep would have been nice.

I’d somehow managed to reach the ripe old age of 30 years old without ever having reason for feeding tubes and gastrostomies to register on my radar. Until that is, I was faced with the situation of my tiny son being repeatedly admitted to hospital ‘failing to thrive.’

James was born full term weighing only 4lb 10oz. We were unaware at the time that he was later to be diagnosed with a rare genetic condition called Wolf-Hirschhorn Syndrome. His syndrome was in fact going to be the defining factor in James’ weight and growth over the coming years. His birthweight was also due to ‘growth retardation’ within my womb, also a significant feature of his later diagnosis. Retardation…. I’ve always found that to be such a hideous word, especially when being used to describe my son.

James Struggles.

At 11 months old James was found to have a large hole in his heart and so shortly after his first birthday he underwent surgery to correct this. We had hoped that this may improve James’ ability to gain weight. Unfortunately, it didn’t. Along with this James had severe reflux and much of his feed invariably ended up over me and everything within a couple of metres radius!!

During one of his now all too frequent admissions to hospital it was suggested that James needed some supplementary feeding via a nasal tube. I was taught how to insert these and how to boost his limited oral intake with feeds down his tube.

It wasn’t easy, as tiny as he was, he was a fighter…quite literally. I was often on my own inserting the nasal tubes as my husband was working ridiculously long and unsociable hours. I had to swaddle James in a towel and straddle him to get the tube down and stuck in place before he could wriggle an arm free and pull it out again.

Sometime following this James had a PEG fitted directly into his stomach. A PEG is one of many different types of feeding tube. However, the benefits were limited all the time he continued to have severe reflux. Unfortunately, his reflux was unresponsive to any of the prescribed medications. James still struggled to keep food down and to put on weight. It was heartbreaking. I’d spend hours feeding him and cleaning him after episodes of vomiting and still he would lose weight.

More Surgery.

There was no other option than for him to undergo a procedure called Nissans Fundoplication ….in layman’s terms, the juncture between the oesophagus and the stomach is tightened to prevent reflux occurring. During this surgery James’ PEG was changed to a different type of feeding tube, a Button.

It was slow progress at first but as James had finally stopped vomiting and we had a way of getting extra nutrition in him via his Button, he did gradually start to grow and put on weight. James currently eats a soft mashed diet but at 27 years old he still cannot consume enough calories to maintain his weight. He still continues to have a bolus feed in the morning and a 5-hour overnight feed via his button.

James’ growth and weight are very much determined by his genetic status but he has remained at 138cm in height for many years and he fluctuates between 38-39kg in weight. James is very cooperative with his gastrostomy feeding. He lifts his shirt and allows you to do what you need to do. I guess it has just always been part of him and he doesn’t know otherwise. At times when he hasn’t eaten it has been a relief to know I can get something down him through his tube. He’s also often reluctant to drink so it has been an absolute boon to know I can keep him hydrated particularly in the hot weather. As for getting medication down, its great for that too.

I know many people will have reservations about having a gastrotomy and will have not had the positive experience we have but I look back now and see it as a really positive turning point for James.