How does a child with PMLD enjoy literature?

We read to our children from very young age. Our daughter turned into an avid book lover, with an advanced reading age. What about Thomas though? Thomas has Profound and Multiple Learning Disabilities. He can’t read, and he has very limited understanding of speech, so can he enjoy books?

We continued reading to Thomas at bedtime, like we always had with our daughter. We used the same picture books we had with her. Over time, we found that Thomas was obviously recognising the books, and some words in them. With familiar books he’d laugh at the end. We also noticed he could anticipate parts. In his favourite, “The Monkey With the Bright Blue Bottom” there are two parts where a bear shouts in it. As we start to reach those parts Thomas begins blinking in anticipation of the louder parts.

We use an e-tran frame for some communication with Thomas, where he can make simple choices through eye pointing. We now have laminated cards for each of his regular bedtime books so we can offer him a choice of two books to be read to him.

Although Thomas is happy listening to any story, and enjoys familiar ones, his enjoyment of literature can be enhanced by the use of sensory and massage stories.

For anyone unfamiliar, sensory stories are short stories where a different sensory stimulus is usually used after each line. I discovered these when Thomas was two, after coming across Joanna Grace on social media, who has written many sensory stories and also written a book on them.

We got her story Cocoon initially, which tells the story of a butterfly emerging from a cocoon. You can see photos of Thomas enjoying the story towards the bottom of the page from Joanna’s website on the link above.

We’ve since bought a number of Joanna’s other sensory stories and two are particular favourites. One, Puddle involves putting ice in Thomas’s hand. Thomas has little reaction to putting things in his hand and his hands are often quite clenched. However, with the ice his hand moved out to the side and he opened it, dropping the ice. Now he laughs in anticipation at the line before.

At bedtime we have the story Dream. A lovely story about how I had dreams for Thomas before he was born. I have made a picture card of a red heart for that one and show it to him before we start. He smiles at it and often laughs. He can laugh throughout the whole story! I’m not sure that’s quite supposed to be the effect of it, but that’s Thomas for you. (For those not familiar with him, he laughs a lot!)

Thomas also enjoys massage stories, which I discovered a few years ago and bought him the Story Massage book for Christmas.

As Thomas can’t sit up unaided then I massage him on his chest when lying down. We use Twinkle Twinkle at bedtime, just before Dream, and he also enjoys Animal Friends, which he’s most familiar with. Again he laughs, usually as we get to the end.

I have written my own massage story to prepare Thomas for his bath time. He loves a bath and the excitement in him builds as I do the massage.

Massage and sensory stories are really useful for preparing a child or person with complex needs for something that may be about to happen to them. If they’re built into a routine they can make the connections between the story and the next step. Thomas doesn’t necessarily understand the words of his “preparing for bed” massage story but he certainly seems to know it’s time for a bath.

Thomas himself will not be able to read in the conventional sense. However, he has stories uploaded on his eye gaze equipment. When he looks at the box with the story it reads out that page. He can then look at a box which will take him to the next page. Sometimes he can fly though a few pages with all the right sequences. Other times it’s a bit hit and miss. His sister will often recite the first page of Finding Nemo, as she knows it off by heart now, given how often Thomas has read that page!

I’ve also put some of Thomas’s sensory stories on there including an autumn related one, as that’s our topic whilst we teach him at home at the moment. I’ve created those so when he reads the line the next page automatically comes rather than him having to select next page. However, this has proved to be problematic, as he is racing through the story, possibly to get to the marshmallow at the end!

Thomas may never become the top reader his sister is but he is definately a lover of literature like her and he has a wide variety of ways of enjoying it.

You can see Mary Atkinson from The Story Massage Programme explain more about massage stories during the online PMLD Conference in January 2022, which is organised by Joanna Grace. Tickets are only £5.

The importance of postural care in a child with complex needs.

Looking after Thomas’s posture is extremely important. If left with no support Thomas’s hips rotate to the right. If left to lie like this he would deteriorate and this would lead to further issues such as scoliosis of the spine.

I am grateful that I saw Sarah Clayton CEO of Simple Stuff Works and Postural Care Specialist speaking at a conference a few years ago. I saw her explain how back sleeping is the optimal position for a child like Thomas due to the issues other positions can cause. I therefore discussed Thomas with her.

The big issue has been that Thomas has slept on his side since he was very young. Due to his serious sleep issues and reflux we began putting him on his side to sleep. His sleep improved and we worried less about the risk of aspirating in the night when he vomited, which he did, every single night. I learnt from Sarah though that sleeping on his side could cause postural issues for Thomas. However, she obviously understood how we’d come to have Thomas sleeping on his side but if it was possible to help him learn to sleep on his back safely then that could offer Thomas significant benefits to his posture.

The NHS purchased Simple Stuff Works products to help position Thomas correctly on his back, which you can see on the photo on the right.

We tried in vain to get Thomas to sleep on his back using the equipment to position him correctly. However, when we left him for the night in this position he laughed for over an hour then eventually cried. We put him on his side and he went straight to sleep. This went on for some time until he just began crying as soon as we left him. So we gave up. We felt we couldn’t do anything and would just make sure we could do all we could position him well the rest of the day, as had been discussed with Sarah.

Recently I noticed something strange about Thomas. It’s hard to explain without showing it. This extra fold in his flesh had appeared near his right hip.

I sought Sarah’s advice again and was advised Thomas’s chest was twisting. Sarah referred me to her colleague, Steve for an assessment via video. Again we discussed Thomas’s sleeping position. I explained how we hadn’t had success in getting Thomas to sleep on his back. I was advised by Steve to try moving Thomas after he had gone to sleep. It was worth a try I thought but really didn’t hold out much hope. I knew that he’d probably wake when we moved him from his side to his back and then we’d be in the same position as before.

We gave it a go though and first night…. success! He did wake when we moved him but stayed in a sleepy state and went to sleep. An hour later though dad went to give him his medication via his feeding tube and forgot to unclamp it after. The alarm went off, Thomas woke and he wouldn’t sleep until we moved him to his side again. Aaargh!

Since then though we’ve had more luck. It’s been a week and one night he managed three hours before he woke and cried out to be moved. The others it’s been around two.

I do curse myself we didn’t try this sooner but at least we have now. Thomas still spends far too much time on his side but we will keep persevering and hopefully he’ll sleep longer and longer on his back until maybe he makes it for a whole night.

We are so grateful to Sarah, Steve and Simple Stuff Works! We’ll get there!

For more information and free resources see the Simple Stuff Works website and check out their YouTube channel for loads of helpful videos on postural care.

You can also catch Sarah presenting on postural care, along with Rachel Wright of Born at the Right Time at the online PMLD Conference in January 2022

Will the pandemic ever end for us?

When the Covid-19 pandemic began in early 2020 I feared for us all, but especially Thomas. Everything was so uncertain but a virus that could be fatal for anyone was certainly going to be high risk for him.

Initially we locked down completely, having no carers in to care for Thomas at all and coping ourselves. We didn’t go into shops and relied on online shopping and the goodwill of neighbours. I spoke to professionals and hunted for information, as Thomas wasn’t sent a letter telling him to sheild but nobody could give me any reassurances either. In the end the GP issued a shielding letter to be on the safe side.

In June with no end in sight and with our daughter struggling we gave in and had one carer back in to give us respite two days a week over the summer holidays.

Since then we have still kept ourselves very limited, whatever the restrictions. Thomas went to school but I only allowed him to go on the understanding he did not mix with other children and PPE was worn by all staff near him. For a short period last Autumn, when they were not having contact with others, my parents came into the house for visits but wore a mask around Thomas and we kept distanced from them.

Early this year we began to see some light at the end of the tunnel as vaccinations began. We became fully vaccinated in March, and whilst we did not totally relax, as there was no confirmation this meant we could not pass Covid on to Thomas, we began to have hope.

Now though we do not. Latest reports show vaccinated people can still pass on Covid-19 as easily as unvaccinated people.

Thomas can’t be vaccinated as he’s too young. He would fit the criteria for vaccination for those 12 and up, having Profound and Multiple Learning Disabilities, but he’s not yet 11. For months we weren’t clear how at risk Thomas was. Covid-19 affects the respiratory system but we are lucky in that Thomas doesn’t get chest infections (he had one age 18 months). It also doesn’t affect children as badly as adults. However, given the death rate of Covid-19 is eight times higher for those with learning disabilities and his are profound, then we had every reason to believe he is at very high risk of serious illness or death, despite his age. The vaccination criteria for those aged 18 months older than Thomas confirms this.

Yet to many the pandemic is considered over in all nations of the UK. Whilst they all have slightly different restrictions now there are basically none. We ventured to shops when we had to when face coverings were brought in but now we are back to fearing that again. (In Wales masks must still be worn in retail settings but this is difficult to enforce and many visitors from England aren’t aware of the different rules).

We have not even had close family in the house, (except for my mum to care for Thomas with PPE) because they now mix with others.

Days out, visits to the cinema, a meal in a restaurant are all far too much of a risk. These don’t even seem possible any time in the future right now.

This all gets even more difficult when we have another child to consider too. We could not keep her home to avoid her mixing in school. It would be too detrimental to her mental wellbeing, as well as her education suffering. It’s therefore been a risk we’ve just had to take. When everyone else was more restricted then I felt some reassurance. There were also restrictions in school and masks worn in class. These may all be gone from September. The next year terrifies me.

We’ve been told we just have to live with Covid as it’s not going away. This comes from people who are either vaccinated or choose not to be though. Those who maybe think having their social lives back is a risk they feel is worth taking. That’s up to them. They are taking that risk for themselves. We would be taking risks for our son.

Ironically a few months before the pandemic I wrote about being scared that Thomas would outlive us. I don’t want him left on his own. I said then though that the alternative is equally scary and here we are, living that reality every day. (Read the blog here )

For us it doesn’t feel like we’ll ever have freedom and the pandemic will never be over. I’m certain Thomas will get Covid at some point. It’s just a matter of time.

Why I’m a carer to my child as well as his parent

Whether we plan to have a child or it comes as a surprise we all know we will care for them for around 18 years, and care about them for the rest of our lives. So what makes someone a “carer” for their own child?

When we decided to have a second child our daughter was just over 18 months old. I’d read that up to 3 years was the maximum age difference to have siblings who could play together. I fell pregnant soon after. I’d anticipated with two young children I may take a career break for a few years until maybe they were full time in school. I knew I had that option and I could return to the job I loved. Instead I became a carer and gave up my job and career altogether.

What is it that makes me a carer then instead of just a parent to two children, which is a pretty full on role in itself?

According to the NHS England website “A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.”

Thomas spent his first 3 weeks in hospital, initially with an infection and investigations carried out into the cause of his small head and brain and also had emergency bowel surgery in that time. (See my earlier blog The Path to Diagnosis). We knew then from the beginning our experiences with him would be very different to that with his sister but we didn’t know quite how much.

As a baby then we were aware Thomas may have difficulties but once he recovered from his surgery he was almost like any other baby for a short while. Except he did have silent reflux and slept terribly. Before long though we had the input of therapists such as physiotherapists, speech and language therapists and occupational therapists. Thomas didn’t gain head control during the typical time frame and he had signs of spasticity. We also noticed he didn’t track objects and his eyes were often nearly closed. He was registered sight impaired at 6 months old.

From nearly the outset then things were different, with many specialists involved in Thomas’s life. This has meant for me, attendance at hundreds of appointments over the years and liaising with all the therapists and specialists.

So where are we now? With Thomas at 10 years old why am I his carer as well as his mum?

There is not typical day or week although some things are routine. Thomas attends a special school full time and a lot of his therapy takes place there. However, there has to be liaison with us and we certainly want to be aware of what has been advised. Communication has to be the same at home and at school so I have to work closely with the Speech and Language Therapist, his school teacher and teacher for the visually impaired. Recently, as Thomas has had yet another Speech and Language Therapist, everything had been reviewed and I’ve taken a lot of time to update his eye gaze equipment and created laminated cards for Thomas to use with his e-tran frame for eye pointing.

There are additional appointments outside of school such as at the hospital, including the specialist children’s hospital, which is a 2 hour drive away. Thomas has had various operations there. Thomas has also been there in the last year to see his neurologist, for an MRI of his brain, for an ultrasound, and for an appointment with the physiotherapist from the orthopaedic surgery department. These take a whole day, with the travelling.

Day to day then what makes me a carer? How does life differ with Thomas to his sister? As mentioned, Thomas is in school full time, except for appointments. His sister, at his age, would have been getting herself ready for school. Thomas needs everything done for him. Often I have to wake him. He has been on a tube feed, via pump overnight so that needs stopping, and disconnecting. The feed is then packed to go to school to finish during the day. Thomas then has two medications via his tube and his tube is flushed clean with water and disconnected from him. Thomas is incontinent so he needs a fresh pad and cleaning up then I dress him. He is then hoisted into his wheelchair and positioned correctly. He wears splints on his legs and these and his shoes need to be put on. He also has hand splints which need putting on. Then to brush Thomas’s teeth and he’s ready for school.

After school Thomas does have respite care two afternoons a week and sometimes his Nanna looks after him. He needs someone with him basically all of the time. He also needs three medications before bedtime. We do different activities each day but the routine one is his daily bath. Obviously Thomas needs someone to prepare him and his bath. There’s therefore the obvious things like taking off his leg and hand splints, hoisting him on to the bed and taking off his clothes and pad. As well as the practical things he also enjoys his “Bedtime” story massage to prepare him then stories afterwards such as massage and sensory stories.

To prepare for going to bed Thomas has his feed set up on his pump and it needs connecting to him. The site where Thomas has his “button”, which the tube connects to and which goes into his stomach, needs daily care and cleaning. The “button” is kept in place in his stomach by a water filled balloon, which needs the water changing weekly. This means holding it in place, taking out the water through a port with one syringe then filling it with another. Before bed Thomas then has the third of his afternoon medications.

For bed Thomas sleeps on his side. We have tried and failed to get him to sleep on his back, positioned with equipment to aid his posture, which is used when he lies on the bed for stories etc. Instead he is aided by other equipment to position him correctly on his side. He goes to bed at 6.30pm, which seems early for his age but he settles down then and often still needs waking for school in the morning!

Thankfully, Thomas sleep has improved and he doesn’t wake too often. When he does, he is turned onto his other side and repositioned. He does require medication in the night, at about 8pm and 10pm. He has historically vomited often due to reflux or his pad leaks and we’ve had to strip the bed in the night on some occasions and many mornings.

It’s exhausting sometimes having to do all these things for Thomas and to think about doing them forever. I had no medical background but I’ve had to learn nursing, physiotherapy, speech and language therapy, occupational therapy and a lot more besides. Then there’s all the paperwork – the form filling, the letter writing and emails.

So many families like ours have had one parent give up work. It is very difficult to hold down a job. I have only just returned to work and it’s a big juggling act with my husband and his work plus the respite and my mum. It’s not possible for many.

For the carers who can’t work then the alternative provided by the government is £67.70 per week Carer’s Allowance. For that you have to be caring for over 35 hours per week. That’s £1.93 if it is only 35 hours a week. Most carers will be doing much more. If you work and earn more than £128 a week you can’t claim, even if the rest of your time is spent caring. Carers who want to work find it very difficult to find a job that will work for them.

I didn’t sign up to be a carer. I had no choice. I sometimes wish I could just be Thomas’s mum, but then I know that I’ve learnt so many skills and had so many good experiences as his carer too, that it’s shaped who I am today. It’s made me a better person. I just wish society valued us more.

This week is Carers Week. Organisations such as Carers UK, Carers Wales and the Carers Trust support unpaid carers. #CarersWeek

Living in limbo

This is my first post in some time, as there just hasn’t been time to write. However, a Facebook post turned out too long so I’ve adapted it to a blog. I had a very up and down day today, which I think reflects some of our experiences this last year but crammed into a day.

What I’ve been considering blogging about is how anxious I feel about things seemingly returning to normal when, for us, the danger is still lurking.

Last night it was announced a further easing of restrictions in Wales, that increases the mixing of people quite substantially, it feels. As it already seems like most people appear to consider the pandemic pretty much over, and are very lax over restrictions now, then it does feel like now anything goes. Whereas, we still severely limit our contact with people. We have not formed an extended household as rules allow, and we have still avoided meeting others for activities such as running. We wouldn’t dream of going into a cafe or restaurant. For us, the risk to Thomas is too great. That includes doing things without him, as, whilst we are vaccinated there is no certainty we can’t transmit Covid to him.

The day began with a chat with a GP, following on from me enquiring about Thomas being vaccinated for Covid during a consultation last week. I raised the easing of restrictions, and that we feel families like ours are forgotten as the attitude of the public appears to be that anyone vulnerable must have been vaccinated now, so it’s all over and they can relax. We discussed the information we’d both found and the GP was really understanding and supportive of our position. I’d love for Thomas to be vaccinated, being confident it’s safe and the best thing for him, but at 10 years old nothing is approved for him. It was left that Thomas would be placed on a list at the surgery of those to monitor for receiving the vaccine and we’d keep in touch as more information comes to light.

Then, later in the day news that the Pfizer vaccine has been approved in the UK for those aged 12-16. This is a positive move for us, I felt, as we can be reassured it is more likely to be considered for Thomas, as he’d only be 18 months younger than the minimum age, and we can discuss the possibility of vaccinating him with medical professionals and push for it if we decide it’s in his best interests.

This afternoon I saw an organisation that supports families of disabled children had posted this news and there were many negative comments along the lines of it being akin to child abuse to vaccinate children against Covid. This is difficult to read. Of course parents all have to make their own decisions for their own children and some people are concerned about the vaccine and, given the mimimal risks of Covid to children, don’t feel they would wish to give them a vaccine that is so new, that they don’t have confidence in. However, for families like ours the risks are different and it feels hurtful to think people may judge me if I choose to seek the vaccination for Thomas.

A little later and I see further news reports on the Pfizer vaccine. This being that it may not be resistant to the Delta variant that is now prevalent in this country. Not only is that the vaccine that is a slim possibility for Thomas but it’s the one we, his parents have had.

I therefore find myself at the end of the day again feeling that this is in no way over for us and that we have been forgotten.

So what now?

We’ve spent 11 weeks shielding Thomas from a virus we fear may kill him. Thomas hasn’t left the house in that time. We have left only for exercise.

We’ve watched as around 40-60,000 people have died around the country from Covid-19, leaving families devastated. Some that we’ve known who have not been able to grieve with extended families due to the government restrictions. Yet our area has so far remained relatively unscathed. I don’t know of anyone personally who has had it fir certain locally, though I’m sure there have been some. The figures for our health authority show a very sharp rise in cases recently though so it very much feels like it’s out there to us. I feel we are still coming to a peak.

We could discuss the political decisions all day. I don’t intend to get in to the rights and wrongs of policy decisions but it’s not possible to ignore them. It’s especially complex here in Wales, as we have a separate government (as do Scotland and Northern Ireland) but only some matters are devolved. Health, social care and education are devolved so the Welsh Government creates policy in those areas and therefore has laid down the the Coronavirus rules and regulations for Wales. The Welsh Government intended to remain in step with the UK government but when the UK government loosened restrictions, when Wales was still seeing an increase in cases, the Welsh government took its own path. However, it can’t make decisions on supporting employees, with the furlough scheme coming from the UK government who have control of those matters. This and other reasons means they can’t completely go it alone in their restrictions and they have recently made changes allowing some meet ups in outdoor spaces but stricter than in England.

The situation with devolution has led to huge confusion, especially as the UK government and press relay decisions made by them as if they are UK wide. Even people living in Wales don’t always understand and think what Boris Johnson announces applies here too so it’s understandable that people living in England don’t appreciate the difference.

Thomas is enjoying life and remains blissfully ignorant to any risk

What we’ve therefore seen in the outside world is a relaxed attitude to the virus. People once again meeting up and even packing beaches and beauty spots in some areas. It seems many think the risk is over or that they weren’t at risk at all anyway.

The latest decision in Wales is that schools will open on June 29th, less than 4 weeks away. As I said, in our area cases are still rising. I won’t be sending Thomas. I very much doubt I’ll send our daughter but they can’t stay home forever.

That means we’re in the position I anticipated we’d be in when I wrote my last post. This isn’t going away. Many argue that was the UK government plan all along: allow the virus to pass through and hope for herd immunity. As I said we could argue the rights and wrongs of that all day. It’s irrelevant. The fact remains that this is where we are.

Covid-19 isn’t going to be stopped. It will keep going in it’s current form or mutate like the flu. Most people will experience it and not get seriously ill or die but not everyone will. I really don’t know where Thomas fits in. We never received a shielding letter from the government, though the GP provided one, agreeing Thomas was extremely vulnerable.

We, and others with extremely vulnerable family members are left wandering a path on our own. It feels very much like we have been abandoned. The responsibility is on us. A shrug of shoulders from the governments.

Sometime my daughter will have to return to school. She really isn’t doing well at home. Sometime my husband will have to go into the office. Sometime I’ll need a break and need a carer or family to come in to give me some respite. I also have a job offer. Sometime I have to start that job.

We’re therefore left wondering: so what now?

Life in lockdown – caring for a complex child during a pandemic

It’s only a matter of weeks since I wrote a blog about being afraid both of Thomas dying and the alternative me dying before him ( and since then he’s been diagnosed with epilepsy, which I expressed a gratitude he didn’t have, and now we’re in the middle of a pandemic.

Since the signs showed that Covid-19 was likely to reach pandemic levels I’ve been anxious for Thomas. For me that began the first days of March. I admit I initally dismissed it when a friend raised it with me but that was in part due to dismissing anything certain sections of the media consider a concern and feeling that as it was all out of my control at that stage then I shouldn’t overthink it. A few days later and I was nervous.

Maybe my friend and I were worried earlier than others as much was said about how only the vulnerable were at risk and we both have sons with medical needs. However, despite all Thomas’ needs we haven’t received any correspondece from the NHS or government to say he should be shielded. Yet Thomas has serious brain conditions, which have resulted in epilepsy, cerebral palsy and Profound and Multiple Learning Difficulties. Initially it was suggested that those who needed to shield were those who qualified for the flu vaccine for health reasons, which Thomas does. Then guidance referred to “extremely vulnerable”. The latest guidance on who is “extremely vulerable” doesn’t now apear to include Thomas’ conditions at all, yet the other day it referred to “diseases of one organ” and “neurological” was one example.

As his parents we can’t see how Thomas can’t be anything but extremely vulnerable in this situation and so we had difficult decisions to make very early on. I asked my husband to consider working from home from the second week in March and I talked about keeping both children at home. However, our daughter had already missed the best part of 6 weeks of school due to her own illness and we’d already had a letter from the Local Authority about her absence, despite them all being authorised. She’d only just started going back to school with reduced hours.

My husband initially wasn’t concerned about working from home and said there were no signs of the virus in his office but he spoke to his manager on the 12th March who agreed that he should work at home from then on. A few days later two colleagues reported they had symptoms. Thankfully my husband has been fine and I feel grateful he stopped going to the office when he did. We decided then we’d restrict our contact with people and from the 17th March we kept both children off school. I went in to collect Thomas’ standing frame and other items like his feeds the next day. It broke my heart that we made a sudden decision and Thomas never got to say a goodbye to his teacher, one to one support and others. Well, more that they didn’t get to say goodbye to him, because I knew his absence wouldn’t be brief.

We decided then we’d have to also stop having carers coming into the home and have no respite care at all. We decided this both for Thomas and for other families to limit who the carer had contact with just in case we carried the virus and spread it. It was apparent to us that despite guidance about isolating once you had symptoms that the virus was spreading from infected people before they were aware they had it.

We had our after school care for the last time on the 18th March. I wanted our carer to be able to say goodbye, as she’s the one we’ve had consistently for nearly 7 years. I felt like we were taking a chance, given we had felt we shouldn’t have contact with anyone now but with no reported cases in our area we knew it should be OK.

Since then we’ve had nobody else in the house and no respite care or support. Thomas was due a hospice stay over the weekend of 28/29th March, as we were supposed to run the London Landmarks Half Marathon after I got a place in the ballot. The event was eventually postponed, although we’d already ruled it out and we cancelled the respite stay. He’s due another in May but I can’t see that happening either. Whatever the government decides I can’t see we’ll come out of isolation for many months.

A typical day now for me is to do Thomas’ initial care when he wakes up about 7am – position him on his back with postural support, turn off his feed and flush his feeding tube, give him his medication, change his pad and dress him. I then get myself organised and get some jobs done, leaving Thomas with a story CD. If I’m awake early or he is late then I try and do a yoga session.

I can deal with the mornings a lot better. I do Thomas’ physio sessions. This is when I get a chance to interact with other people, as I can hold my phone whilst doing some of the stretches. After lunch I feel a bit lost. I have so many things I know I can do with Thomas but I feel he’s fed up with being home now and he doesn’t seem to respond that well! We have options of him going in his standing frame or going on his eye gaze. However, he seems to have stalled on his eye gaze and is pretty much only interested in his YouTube videos grid where he’ll predominantly watch my song for him, “Rule the World”. Even I can have enough of it after 2 hours! Though it’s amusing when he does it for his dad at weekends. I swear he does it to wind him up! He puts it on and looks at Dad and grins then laughs when he responds “Not this again Thomas!” or similar.

I feel a permanent guilt at the moment. I feel I don’t do enough to stimulate Thomas, as I’m thinking of what else needs doing and seeing to washing and dishes and trying to get some shopping etc. Shopping has been a big issue. We’re too afraid to go to any shops but online orders are like gold dust. I now have a collection for next weekend after I placed an order at 2am.

When I organise these other things then Thomas is happy and content in his chair with his switch and a switch adapted toy or something else to take his attention but I still feel it’s not enough. It’s hard to motivate myself to try other things when I feel I get little reaction from him though. I do feel he’s bored of me!

I feel guilty towards my daughter as I don’t feel she gets our time but, to be honest, she’s at that age where it’s fairly normal to hide in her room anyway. Certainly she says she’s fine and doesn’t want anything when I ask her.

I get out once a day. My husband and I take it in turns walking the dog when it’s his lunchtime then the other one of us goes for a run when he’s finished work. That person then cooks whilst the other has been getting Thomas ready for bed.

After our meal we spend time with our daughter. I have been craving documentaries or serious films. I think I’m lacking mental stimulation and want something to exercise my brain in the evening. The problem is nobody else does! I make do with a bit of reading in the evening then I get to sleep too late.

It feels like a treadmill and I can’t see an end. I’m trying not too look to far ahead, as what’s the point? It’s so uncertain. What I do anticipate though is difficult decisions ahead again. I strongly suspect that schools will return before we get to a stage where everything is safe. We then will be faced with deciding whether we allow both children to return or not. From the outset I was anxious about Thomas’ sister transmitting the virus, despite what was said about children not suffering badly from it or there being evidence they transmitted it without symptoms. I know from bitter experience that children can be asymptomatic and carry serious viruses to others. It’s probably why we are where we are with Thomas, as his conditions are caused by CMV (see my previous blog “In the beginning – the path to diagnosis” However, keeping our daughter off school could harm her education and mental health and the issue could continue for months, even years. Everyone hopes for a vaccine but even that could take a year or more. There’s no guarantee she’d be fine with the virus either though seeing as a child a similar age to her (without any health issues) has sadly died, so both children and ourselves could be at risk. It’s just so overwhelming.

This will be my last blog for some time I suspect as there’s just no time to write now. It’s only the Easter break that’s given me a chance.

Stay safe everyone.

Any other day

As we pass Christmas and start a new year I start to think about how it will soon be Thomas’ birthday and I feel a mix of emotions.

As any follower of this blog will know Thomas is profoundly disabled. He has no mobility and his understanding is very limited. Developmentally he’s around three months old in all aspects and will not advance much further. He’s classed as life limited but does not have a specific prognosis. He is however, the happiest little boy in the world. He is constantly smiling and laughing. He brings us so much joy.

Birthdays are hard, however. He has no idea it’s his birthday. He doesn’t register he has presents or cards etc, and he is tube fed so he doesn’t eat cake (a little mashed up with custard maybe but that’s it). The celebrations mean nothing to him and they’re a constant reminder to me of how he is different. Also, after his birthday there are the anniversaries of all the events that came after his birth, and it stings. 

I also know that for the following three weeks or so after his birthday I’ll feel emotional, remembering what happened nine years before.

My pregnancy and his birth were quite unremarkable, save that Thomas arrived on his due date, for which there is a 5% chance. After his arrival I felt my family was complete, he being a brother to our two and a half year old daughter. Nothing prepared me for what was to come next.

I expected to go home the day after Thomas was born. He was born at 8:30pm. Instead he was taken to the neonatal unit due to a rash, which blood tests showed came from an infection. He was placed in an incubator and was attached to wires and monitors. I don’t remember when, but at some point he was put on oxygen. Later that day a consultant came to see him and remarked his head was small, which could indicate that his brain was not developed. 

Thomas spent a total of three weeks in hospital. His infection cleared up in a week or so but his oxygen saturation levels were up and down so he didn’t come off oxygen for two weeks. It was concluded he was fine, his levels were fine. In the meantime he’d undergone various attempts at an MRI, eventually having one successfully at 10 days old. The following day, we were given the results. It was confirmed Thomas’ brain had failed to grow properly. At that time we were told it was so severe he’d only live a few months.

My world fell apart. I cannot begin to describe the pain I felt for those next five days.

We ended up seeing a neurologist as Thomas was rushed to the specialist children’s hospital at 16 days old. We’d actually been making plans to get him home for the end of the week, as he’d come off oxygen. Although we expected to take a medically fragile baby home, whom we could lose at any time.

Thomas had other ideas however. He’d vomited all night and it was found his bowels were twisted. He had an emergency operation that night after we’d signed the consent forms, all the risks being outlined. Just before he went in to theatre we saw the neurologist, who’d seen Thomas’ MRI scan. He explained that things were not as severe as we’d been told. Thomas had microcephaly and polymicrogyria. He explained he could have some learning disability or be severely disabled but that he was not at immediate risk of dying. 

Thankfully, Thomas recovered well from his operation and he came home five days later but we had no idea what to expect for him.

In the few weeks after Thomas’ birthday I am reminded of his first difficult few weeks and the rollercoaster we went on until we got him home.

I absolutely adore Thomas and having him has enriched my life so much. His birthday is special, as with any child, as it marks the day he arrived. But it is also tinged with sadness, I feel we go through the motions and it’s lost on him. To him, it’s just like any other day.

This is an updated version of my blog originally published by Family Fund in 2017.

Why I’m scared I won’t bury my child

No parent should have to bury their child, but we’ve known since Thomas was a matter of days old that he isn’t expected to live beyond early adulthood. For a few days we were actually told he’d only live a few months, then a neurologist’s analysis of his MRI scan revealed it was no so drastic as that. We spent 5 days though holding and looking at our baby believing he wouldn’t survive the year. I’ve never known pain like it. I understood the feelings behind self-harm that week, the thought that maybe physical pain could take away the emotional pain (I didn’t try it). I can therefore anticipate what it may be like when the time comes.

We’ve been told now that Thomas is life limited, that his life will be shorter than it should have been due to his conditions. Nobody has given us any time scale though. He qualifies for care at the local children’s hospice, which is for children who aren’t expected to live beyond 25 years old but I really don’t know what to expect.

Thomas is currently 8 years old and we’re so lucky. He is remarkably healthy given his conditions. He has a serious brain condition that has left him profoundly disabled in every respect. Yet he doesn’t currently suffer seizures. I know parents of children with epilepsy and it looks such a frightening thing to have to deal with. As every year passes and Thomas remains seizure free I breathe a sigh of relief. I don’t know how much I can relax though and if there’s still a chance he could develop them. For now though it’s a trauma we don’t have to deal with.

Thomas is also very healthy in other respects. Not being mobile means he doesn’t run around and exercise his heart and lungs like healthy children. He also lies flat a lot more that healthy children. Children like Thomas are therefore more at risk of infections, particularly chest infections. As he has reflux Thomas is also at risk of aspirating (vomit and saliva going into his airways) which can cause issues such as chest infections. He’s only had one chest infection in 7 years though and wasn’t too ill. The last overnight hospital admission due to illness was for bronchiolitis when Thomas was under a year old and many healthy babies get that. He is quite remarkable.

Thomas’ good health though leaves me in the paradoxical situation that I’m terrified I’ll die before him. He’s so healthy it’s so hard to think of him dying in the next few years so what if I and my husband go first? We’re only in our 40s now but who knows how healthy we’ll remain and how long Thomas continues to do so. Then there’s obviously the chance of sudden events like accidents.

I have absolutely no idea what would happen to Thomas if something happened to my husband and I. We have wills prepared and my parents listed as guardians for Thomas and his older sister. We made our wills when he was a baby and were advised to add a Letter of Wishes to go with it. This isn’t legally binding but gives your preferences for things like care for your children. I have only just done it though because I didn’t know what to say. I have just tackled it with my parents who have reassured me the children can live with them. I was so scared of talking about it for years, as I was afraid they’d say they couldn’t do it as they couldn’t cope. I would have totally understood if they did but I still didn’t want to hear it.

Having these thoughts and feelings recently has prompted me to seek advice and review our wills. I’ve been advised we need at least one other guardian, someone of our generation but I can’t think of who I can ask. As I said above it’s a massive responsibility for anyone, especially as those who have their own children and responsibilities even if Thomas didn’t live with them so I don’t know who to ask at all. Imagine how difficult it would make a friendship if I ask someone and they said they couldn’t do it. Whilst I’d understand I’d feel awful for having asked them. So it’s on hold because I don’t know what to do.

The biggest fear is therefore both my husband and myself dying but even if it was just me that’s scary too. I’m Thomas’ main carer. I’m the one who deals with all the professionals, who does the research on methods of communication and so on. My husband works away with a long commute so whilst he is wonderful with Thomas (and Thomas loves his Dad so much) then he’s less involved and less aware of everything. He’d have to give up work and take it all over but going with me would be tonnes of information. I’m sure my husband would be more than capable but I know how lost he’d be for a long time.

I don’t know how much Thomas would be aware. He certainly recognises us and has his favourite people but I don’t know if he’d notice if I was gone. In some ways that’s a blessing I suppose. In others it breaks my heart.

I haven’t forgotten my daughter here. I just can’t bring myself to think about the effect on her in any circumstance. It breaks me.

This whole thing is something that comes to me occasionally but I’ve forced it into a box and I daren’t open it. I know when I’ve lifted the lid on it, it hurts so much that I have to force the feelings back in and put the box away. I therefore find myself in a situation where I am terrified I may not bury my own child because the alternative seems so much worse.

In the beginning – the path to diagnosis

Thomas was less than 24 hours old when we first knew there may be an issue. “We’ve noticed his head is very small” the consultant said. “This could indicate a problem with his brain.” Terrifying. “But it may be you’re just a family who have small heads and he’s inherited that.” So, measurements were taken of our heads. Thomas’ head was on the 0.4th centile and his height and weight were between the 25th and 50th. Me, I was on the 96th, leading to much teasing ever since. My husband was on the 50th. So it wasn’t that we were a family of small headed people.

To me my little boy looked perfect. He was in the neonatal unit due to an infection but he’d been born on his due date and was a healthy weight. The infection was a short-term problem I thought. He’d get treated and be home soon. Not ideal, as I hoped to take him home to his sister the day after he was born but it won’t be too long. Then this. A possible problem with his brain. Probably my worst fear. Less than a year before we talked about adding to our family and I said “But what if we have another and they have additional needs, how would we manage?” I asked my husband. Those words came back to haunt me.

He was 11 days old when we got the results of an MRI scan. We entered the room and sat down with the consultant. We’d never met him before. Thomas’ had gone on holiday the day after raising the fact that he had small head. Since then we’d seen the duty consultant, so someone different every day, who the next day would refuse to answer our questions, as they weren’t the duty that day. A nurse from the ward came with us. She sat on a table, whilst my husband and I sat on a sofa, the consultant opposite. “I have the results of the MRI” he said. “I’m sorry but Thomas’ brain isn’t developed properly. He has lissencephaly. This means he’ll only live a few months.” I’m sure he said more than this but that’s all I took in. I just recall the nurse, sat on the table, swinging her legs back and forth, not a care in the world. We were then just left. The consultant went to carry on with his work and the nurse hers. She remained on the ward, taking care of Thomas, but not a word to us. Maybe she was a fantastic nurse to the babies in her care but for us, there was no care or compassion. We were alone.

I’d never entertained the idea of self-harm. I still didn’t get that far but I can remember walking back to the neonatal unit after having been out to get a drink, or lunch, or something, and I remember seeing the doors to get in and getting the feeling that if I hurt myself somehow it might take away the pain inside me. It would be a distraction from the overwhelming emotional pain inside. It’s not something I can fully recall now and I don’t think anyone can grasp it unless they’ve felt it. I didn’t know how it was ever going to go. I was grieving already for my baby boy and he was still with us. We had no idea how long for. Yet it seemed so unbelievable. He was still on oxygen but he was over his infection and the oxygen was only on a very low level. We just couldn’t seem to get him off it as his oxygen saturation levels (his SATs) were erratic. Turn the oxygen up and his alarm would go off as his levels were too high, but when the nurses turned them down, he’d alarm through being just too low.

It was late Friday afternoon we got the MRI results. That same day I was told I could no longer stay on the ward, as the room was needed for a family who were preparing to take their baby home. I had been allowed a room as I was breastfeeding. Thomas, like his sister, had taken to it naturally, although he had to be woken up for a feed often as he could go about 5 hours without one. I was shown round some student rooms on the hospital site as an alternative. It was all very unclear if someone was already staying there yet there was a mouldy orange on the worktop. I opted to stay at home. Thankfully we lived a stone’s throw from the hospital. It was probably a good thing. I lay with my head on my husband’s shoulder, his arms around me and I sobbed.

On Monday we asked if the duty consultant that day could go through the results of the MRI again. We didn’t expect different answers, and we didn’t get them but we wanted to be clearer. We met with the consultant who came to be Thomas’ consultant for the next two years. He didn’t refuse to deal with us for the rest of the week. He helped us make plans to take Thomas home. We asked for him to take on Thomas, and he did.

In that meeting we ended up with the same nurse. She did the same. She sat on a table and butted in, asking the consultant to clarify things. Things we’d already heard and didn’t really want to hear again. It’s not like she asked so she could understand some more, to help us, so I don’t know why she felt the need to ask. It was intrusion. That was it then again though. No other support and each time we had to deliver the news to family and friends.

A couple of days later and we hoped to take Thomas home by the end of the week. I had got a bed on the ward again and I was woken early to be told Thomas had vomited all night. There were concerns with his bowels. An X ray later confirmed they were twisted and he was rushed by ambulance to the specialist children’s hospital, an hour away for an emergency operation. As we waited for him to be taken to surgery the neurologist came to speak to us. He had a brief chat about Thomas’ MRI and the impression we got was that things weren’t as dire as we’d been led to believe.

Thomas was taken for surgery about 8pm. We decided that neither of us would go with him whilst he went under the anaesthetic. It’s something I feel some guilt about now, but only one of us was allowed to go and I was so terrified of being on my own and we knew at 16 days old Thomas was none the wiser. We then had an anxious evening waiting for Thomas to have his surgery. 3 hours later we were informed that the surgery was successful and we could go and see him. The next 5 days are a blur. I know from Thomas’ operations since that the wounds need monitoring and possibly stiches being removed. I don’t remember any of that. I mainly remember trying to re-stablish breastfeeding. I’d begun to give up, as the pressure for him to eat increased the day I managed to pull out his drip when it got tangled round the chair. It just felt so important to me to establish it again seeing as I had been breastfeeding. Also, I know breastmilk can aid brain development and my little boy needed all the help he could get.

Somehow, we managed it. Thomas began breastfeeding again, and when he was 3 weeks old he came home. Before that Thomas had a CT scan and we had a meeting with the neurologist. Thomas, he said, had microcephaly (meaning small head) and polymicrogyria (meaning small folds). He also had calcium deposits on his brain. Essentially Thomas’ brain had not developed properly. We were told this could mean he could be severely disabled or he could have mild learning difficulties, or anything inbetween. Given what we’d previously been told this was really positive and we felt we could deal with whatever life gave us.

Once it was apparent Thomas had some issues efforts were made to learn the cause. Blood tests were taken and all proved negative. We had to give blood samples and spoke to a geneticist. Before we came home a urine sample was taken. A few weeks later we received a letter from the neurologist saying Thomas’ urine had tested positive for CMV (cytomegalovirus). That was it, apart from a remark about how he couldn’t understand why the blood test hadn’t discovered it. What families like ours did without the internet I don’t know, because we’d never heard of CMV. What we learnt was that it is a flu type infection and it can damage the development of the baby if a woman catches it for the first time whilst pregnant.

Thomas’ consultant called us in for a meeting the next day. He apologised for us receiving the letter with no more information and that’s why he’d got us in as soon as he could, He explained that I had likely caught CMV early on in my pregnancy given the damage it had done to Thomas’ brain. He also said that with the brain conditions and also the calcium on his brain he was “highly likely to have significant problems”. I’ll always remember those exact words. I was crushed again. But we vowed that we’d take each day as it came and treat Thomas likely any other baby until any differences became apparent.

That was nearly 8 years ago. The start of a very long journey. It didn’t take long for the differences to show and we realised Thomas was at the more severe end of the spectrum. I do feel quite bitter about the lack of support when Thomas was diagnosed. The consultant we then had permanently after Thomas was discharged (until we moved out of the area) was brilliant and really empathised but didn’t know where to direct us. He did his best though and we really appreciated that.

We’ve learnt a lot these last 8 years and I wish I could go back and tell myself then that it will be tough. It will be hard at times to see how different Thomas is to other children and you’ll have battles to get him what he needs but Thomas will bring you joy and happiness and he will light up your world.

For more information on CMV see CMV Action