A Parent Perspective: Interview with Emma

This is my latest interview in an occasional series – A Parent Perspective – with Emma. I first met Emma when her son, Ted, was very small and we lived near each other. Baby Ted reminded me so much of baby Ben. Since then she has moved out of London, had another child, Ted has blossomed and our families have become friends.

My son, Ben, is 12 and I knew very little about disabled people when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences and I hope you might too.

Could you describe your family?

There are four of us: my husband, Rik, and me. Ted is my oldest child who is nine now, and my daughter Dilly is six. We often have a carer with us too. We live on the Wiltshire-Somerset border but we’ll be moving to Somerset once we adapt a house there.

How would you describe Ted and what does Ted love doing?

Ted is a very happy, smiley boy. He loves being around people and in the thick of it. His favourite place to go is a supermarket – he literally whoops with joy when he realises that we’re going there. He also loves slapstick comedy, silly games, fart noises, all of that kind of thing.

He has cerebral palsy from a catastrophic brain injury at birth, which affects his whole body. He requires a lot of support with everything in his life so we have a lot of help from carers.

Ted goes to a brilliant school in Bath. He used to really hate goodbyes and would wail as we waved him off on the school bus in the morning. They’d always text 10 minutes later to say he was fine, but it was awful. Then we had this gruff, Scottish driver who’d joke with Ted and now he gets really excited when the bus comes.

Did you know from the moment Ted was born that his brain injury was going to going to have affected him?

He was in a very poor state when he was born and he was whisked off into NICU. That night the consultant mentioned the words cerebral palsy. We were taking each day, each hour, each minute at a time. Once he moved from NICU into Special Care, I think the naive part of me was hoping for a miracle – one of these people whose life support was almost turned off but now they’re six foot and play rugby. There were lots of signs that wasn’t going to happen – feeding difficulties, physios saying he was very stiff, nurses giving us a knowing look with a slight tilted head. We had a diagnosis of cerebral palsy at about three months. Ted cried all the time in those early days.

There were some forums that I joined that I quickly stepped back from because it was just terrifying to me at that point – people’s children were passing away or having terrible seizure disorders. Life seemed very medical and very difficult. At that point, Ted needing a wheelchair was the worst thing I could think of. Now I know that Ted not walking is the least of our worries. I was asking myself if Ted was going to be constantly unwell? Was I going to be in and out of hospital wondering if he was going to make it through the night? At the beginning you don’t know what is going on, you feel like you’re upside down half the time. It’s a lot to deal with.

What was helpful in that early period?

Realising I could say no. There was a physio playgroup at 9am on a Tuesday and I found it stressful getting out of the house that early to get the bus. When I got there, I don’t know what I was supposed to be doing. Everyone else seemed to have a programme to follow or children that could play. The day that I said, ‘I don’t want to go to that, I’m not finding it useful,’ felt really big because I felt like my baby belonged to a system. He wasn’t really mine. He belonged to the hospital, social care, and health care systems, so it was good to take back some control.

I felt very different to other mums and like Ted was very different to other babies when he was tiny. But actually I realised that he didn’t really look any different to anyone else. One of the people I’d met in antenatal classes was persistent in inviting me out for a coffee and we went to baby massage, and that was really helpful. A little normality was what I needed. I learned to accept help from friends. I tried not to hide away and to do some fun things. They were all quite tinged with sadness though, because it was a traumatic time and the antithesis of what I expected having a newborn to be like.

How did you make decisions about having another child?

We always wanted more than one child but there was fear and anxiety. I knew it was very unlikely for the same brain injury to happen again but once you spend some time within those Facebook forums you hear awful stories. I didn’t know if I could do that again, but I knew that we did desperately want another child. I wanted to experience what it might be like to have a neurotypical child and have a non-traumatic birth. Ted was three when Dilly was born and was having a bit of time at nursery. He still had his moments, but he was generally happier about things, a bit more comfortable in his body. We’d resolved some of the feeding issues (he still wasn’t tube fed at that point). It felt like a good time, and it was brilliant.

Dilly’s birth was super easy in a birthing pool but feeding was not smooth. I decided I was going to make breastfeeding work, but it was four months of absolute agony before we found our groove. It was difficult deciding whether to keep going or move to formula because I’d had to do that with Ted. I’m glad I persevered – I fed her for four and a half years in the end and it gave us an incredible bond. Having Dilly made me really appreciate what it’s like to raise a neurotypical child, but also understand everything that Ted had struggled with.

They are completely different children, and you have to accept them for the child they are rather than the child you want them to be, or that you think they are. Regardless of disability. I realised that I had to fully accept Ted as he is. I had to embrace every aspect of him – feeding difficulties, missed milestones, a body that didn’t work as it should – as much as I accepted that he had brown hair and brown eyes.

How have you approached therapies with Ted?

I definitely went through a stage of thinking if I just found the right combination of therapies, I could make Ted do these things that he was clearly never going to do. We settled on ABR therapy which we’ve done since he was six months old. When we first went he was very tight and angry, and I don’t think it’s necessarily given him much more functionality but it’s brought him a lot of comfort within his own body. I focus on the physical therapy, and could probably do more in terms of communication. Ted’s very bright, sociable and clearly understands a lot, but we don’t know where his cognition level is and we haven’t found a good system of communication beyond eye pointing and smiling.

How do you think having Ted changed the kind of parent you are?

I think I appreciate every little milestone of Dilly’s in a way I probably wouldn’t have done if I’d had a typical first child. I think it’s been a real blessing having Ted because he suits who I am as a parent – low key! I don’t feel pressure to make sure that Dilly is attending Mandarin classes or whatever. We prioritise experiences and family time over formal learning.

Before you have children all you know about is sleepless nights and ‘terrible twos’. You don’t feel the love, or see how angelic your children look when they sleep, or know what it’s like when they write you cards saying, ‘I love you’. From the outside you just see the difficulties, but you can’t know the amazing feeling when I make Ted laugh.

How have you found having carers to help Ted, and how have you made it work for your whole family?

I’m extremely grateful for the help that we have. It ebbs and flows but I have a good life and if we had to do all of the 24/7 care, would I be as resilient and upbeat about it? We’ve had carers since about 2016, including some nightcare, and it’s strange sharing your house with other people. For the first time recently, Rik and I were bickering in front of the carers because our house is not particularly big. I think it was making them feel quite uncomfortable, but I can’t wait until 8pm on Friday to schedule an argument with my husband. Having carers in the house is really helpful but there’s not a lot of privacy. It does mean that I can do the fun things with Ted and pass off the boring tasks. I can focus more on Dilly and I’m able to work and do some things for myself, which is incredibly important. It comes with a fair amount of guilt for people that don’t have what we have.

What helped change your thoughts about Ted’s disability, since the period after his birth?

Having talking therapy and processing the emotions was helpful to a degree. Meeting you was really helpful – someone who was a little bit further down the road than you are, modelling that it’s okay. Reading Andrew Solomon’s book, Far From The Tree. Listening to podcasts. Listening to disabled people, partly on social media, and unpicking internalised ableism.

Realising that we’re all different, and different doesn’t have to mean bad. Our life is never going to be how it is in our head. We’re never the mothers that we think we’re going to be because our children come along and are their own people. That’s irrespective of challenges. I looked at what I want from life and how I could go about getting that, and none of that involved taking away Ted’s disability. Before I had Ted, I definitely had times where I felt like there had to be a bit more to life. I wanted a life with more meaning, and that’s exactly what I’ve got. Going through difficult times makes you appreciate the better times.

When Ted was born someone from work sent me a card which said (I think it’s a John Lennon quote) that everything will be okay in the end, and if it’s not okay it’s not the end. It’s really hard to see that in the beginning, when I thought ‘okay’ was a miracle recovery. That’s not what happened and it’s more than okay. You can come out the other side of the difficult times and it can be brilliant.

You can find Emma on Instagram here, and on Twitter here

Sister Molly

Ben and Max’s sister, Molly, is four weeks old. We have survived a month with three children, something which feels like no mean feat.

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That seemed unlikely after our first family outing one week in, when we made it just 100m from our front door before Max broke the rules about how far ahead he was allowed to go on his bike, we shouted, he started crying, Ben started crying because Max was crying, and we all went home. Since then we have managed a family swimming trip and some less eventful local walks. So we might actually be capable of leaving the house as a family of five.

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Both boys have been unbelievably sweet with Molly, and very tolerant of the disruption and imposition involved in having a new-born sister. Through a combination of James having a month off work, numerous carers and family members helping us out, and a baby that sleeps a lot, we have been able to keep things as routine as we can. Ben has shown once again that he can cope with a lot of change and take it in his stride, while Max has been demonstrating his capacity to be both a kind big and little brother. We have all had a lot on, but we’re doing okay

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We do not approach birth lightly. Ben’s disability is because of problems during his birth and we therefore know too much about the risks of things going wrong and having lifelong implications. Max was ill immediately following his birth and had to be admitted to NICU. We sort of assumed that our third baby would end up in NICU, even though a neonatal consultant took the time to explain to us how (very) likely it was that we would have a totally healthy baby.

One of the people who really understood our concerns about the birth of this baby was the obstetrician who we saw throughout this pregnancy and who had previously delivered Max. She is someone we have huge respect for, whose judgement we trust, and who had successfully guided us through my second pregnancy when we were at our most anxious about having another child.

This time we knew in advance that she would not be able to deliver the baby because the elective caesarean was booked during the Christmas period when she would be on holiday. Another obstetrician would do it, it would be fine, we told ourselves. As we prepared on the morning of the birth, getting in to gowns and talking photos of my puffy face, we were calm but nervous. And then she popped her head round the curtain to say hi. Dressed in jeans and tshirt, she was officially on holiday but had come in specifically to do my caesarean section.

That, there, is an emotional moment: the joy of knowing we were in her hands (literally in my case), that our baby had the best possible chance of therefore being fine, that someone so thoroughly understood how difficult this all was for us and had come into work especially.

And then Molly was born, screaming before she was out of my womb, to be immediately declared, with a thumbs up, totally and utterly healthy by the neonatologist we had demanded be on hand to check. No resuscitation, no breathing difficulties, no-one at all worried about anything. She breastfed immediately and, following the facilitation of the obstetrician who knows we spend too much time in hospitals, we were able to go home the following day. You would not believe how uninterested everyone is in a healthy newborn baby – barely any observations, no-one came to check her overnight. If you hadn’t had experiences like ours you would have no idea of the anxiety and stress lurking just across the corridor in the neonatal unit.

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We have now had four weeks of admiring and nurturing little Molly and she is a delight. Third time lucky, we had a baby who didn’t need a canula in their head, or a tube in their nose. She immediately breastfed and sleeps like a champion (just not always at night-time). We take none of this for granted – it is luck of the draw whether you have a baby that does the basics easily or not.

We have not lost and will not lose sight of what a privilege it is to have her here with us, healthy and thriving. Nor what a delight it is to share this baby girl with these boys of mine. We are all lucky.

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Ben is 6!

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Ben is 6! Like every year, the actual day is full of mixed emotions. While we are joyful that we are celebrating six years since Ben joined us, on the day I am also mindful that this time six years ago Ben was being resuscitated then being transferred on his own in an ambulance to a different hospital, and that our lives changed forever.

But it gets easier every year, as the memories are less immediate, there is more to celebrate and Ben is more engaged in birthdays.

As is now our annual tradition, James made a video to summarise Ben’s year. I won’t post it, partly for reasons of privacy but also because of self-indulgence; while most parents will happily watch a ten minute video of their own child, no-one I know really wants to watch a long video of someone else’s child, even if that child is the subject of a semi regular blog they read. It’s surely the modern equivalent of being made to sit through someone else’s holiday photos.

So, here’s the executive summary. It is unashamedly positive. Let’s ignore the tiresome stuff for now.

In Ben’s sixth year he:

  • Enjoyed ice-skating and went round the rink quite a lot faster than grandpa;

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  • Went down a zipwire, swung from a sports hall ceiling and went kayaking at the Calvert Trust;

  • Did a lot of triking;

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  • Was a lovely older brother to Max, letting him wear his lycra suit and clamber all over him;

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  • Moved house (again – his fourth since he was born);
  • Got a new wheelchair-accessible car (which is great but unfortunately turns out to be one of the cheating VW emission scandal cars…);
  • Got his own eyegaze computer to use at home and used it to tell us knock knock jokes;
  • Went to the House of Commons and met an MP;

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  • Lost four baby teeth, swallowing at least one;

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  • Did a lot of trampolining;
  • Went to a summer playscheme for the first time and made a biscuit the size of his head;
  • Went on holiday to the Cotswolds and Cornwall. Next year places beginning with D. Suggestions welcome;

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  • And last but not least, left one wonderful school and started at another, settling in quickly.

Ben had a lovely birthday. Over the years we have learnt what works and what doesn’t. We are less concerned these days about what a typical six year old birthday party would be like and just do what we think he will enjoy – small family celebrations, lots of presents and balloons, ice-cream cake which he can at least taste if not eat.

If I do say so myself, we have done particularly well with Ben’s presents this year. It’s tricky to think of things he will really like beyond yet more books, but he is really enjoying a puppet theatre where we put on shows for him with hand puppets, a lightbox that we can spell words on, and a teddy bear that will play Daddy’s voice (from Kuwait this week) or anyone else who records their voice via an app. So satisfying when all of the thought I have put into presents he will like pays off.

The coming year will involve more change for Ben, not least with a new sister and another house move. His somewhat relentless life will continue with the usual levels of complexity and endless appointments, but he has continued to prove that he can take it. It feels like he (and we) are more resilient and happier than ever. We will inevitably have some blips. I am certain the arrival of a third child will throw us all off course, he’ll get the usual winter bugs and we will face unexpected challenges. But, but… if I had been able to see how well we are all doing six years on from the awful day of his birth, maybe I wouldn’t have been quite so sad.

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Five years old

Ben has just turned five.

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A birthday means the anniversary of his birth, which was a mixed bag.

But loads of good things have happened since! Each year we make a list of what Ben has got up to over the previous 12 months; achievements noted, developments made and skills gained. Parents of disabled children often talk about ‘inchstones’ rather than milestones. Early on, it became clear that the gross motor skill developments that characterise a typical child’s life were going to be hard for Ben so we had to adjust our expectations and targets accordingly, but success rewards the patient and if you look in the right places there are wonderful things to be found.

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In the year between his fourth and fifth birthdays Ben has done a lot, including:

  • left nursery, started school full-time (settling in brilliantly)
  • learnt to enjoy the affections of his brother and realised Max can be funny
  • used an eye-gaze computer regularly, playing lots of games
  • learnt to look at Yes and No symbols regularly
  • stopped having any formula milk, eating only home-made food
  • adapted brilliantly to having a night carer
  • discovered his love of the hot tub
  • started getting the bus to school
  • learnt loads of letters
  • reliably recognised the numbers 1-10
  • starting riding his trike
  • met Michael Rosen!

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Ben has really thrived over the last year – he has been healthier than ever and had a lot of fun. We were looking forward to celebrating him turning five with a tea party and a family video of the past year’s best bits…

… and then he really pulled it out the bag!

We have known for a while that Ben recognises most letters and Granny has been diligently teaching him to read. His school has also been working on phonics with him and recently he has been using the eyegaze computer in his classroom to do some work with letters. The day before his fifth birthday, Ben came home with this message from his teacher:

‘Ben used his eye gaze [computer] to independently word build. I asked him to spell out bat and several other ‘-at’ words at the end and he did so no problem!’

If that isn’t a bloody milestone, I don’t know what is. Love that clever boy.

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