'I'm the mum of a disabled little boy – these are the things I want you to know'
Ivor Washbrook loves climbing trees and singing and dancing with his sisters. He also has a syndrome that will affect his whole life
Sarah Washbrook with her son Ivor who has Angelman syndrome
(Image: Sarah Washbrook )
Sarah Washbrook's little boy Ivor is funny, his smile is luminous, and he likes climbing trees and singing. He loves laughing and dancing with his sisters and is, his mum describes, "utterly and simply excited by life".
The five-year-old also has Angelman syndrome – a neurogenetic disorder affecting about 1 in 15,000 people and approximately 500,000 worldwide. People living with Angelman syndrome have a genetic difference on their chromosome 15. In Sarah's words, it's normal to have two copies of chromosome 15 – one from each parent – but Ivor has two 'dad' copies of chromosome 15 meaning there is one small but important gene not functioning as it should.
That is the gene which controls a protein involved in brain functioning that helps us walk, talk, and perform many other everyday tasks.
People with the syndrome have significant intellectual disability, balance and coordination issues, motor impairments, and often experience debilitating seizures. Disruptive sleep and behaviour are serious challenges too. Some never walk and most are unable to talk. For our free daily briefing on the biggest issues facing the nation sign up to the Wales Matters newsletter here.
Sarah, from Monmouthshire, already had two daughters – Bethan, now 11, and Olwen, now seven – when Ivor was born and she knew early on that something was different for him. He missed every milestone but she was repeatedly told it would be fine.
Yet from the point of Ivor missing his expected first milestone of rolling she knew something was wrong.
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Covid played a part in the delay of getting answers, because there wasn't the medical contact for mums in that period as there would normally be, but she had to fight for three years to get a diagnosis for him.
"My heart was breaking," she said. "Something was wrong with my beautiful child. Some days I was hopeful – hopeful that perhaps he was just a late starter, just slow. But the reality was starting to crush down upon me even before we had a diagnosis – suffocating me, blacking out my world. Life as I knew it was crumbling around me."
Even when he was diagnosed she felt unsupported. As she left the consultant's office having been told the name of the syndrome she was given a tissue in one hand and a leaflet in the other. She had no idea what would come next in terms of for her son, or how to cope, or what help she could get.
Fighting for that diagnosis was tough and Sarah admits she went through a "deeply dark time". "I'm quite a strong woman but I was on my knees," she said.
"I knew something profound was up, something really serious was at play, and I didn't know what it was. I felt helpless," she said.
All that was while trying to maintain a sense of normality for her two daughters.
She has struggled with a sense of grief after his diagnosis but the reason has changed over time. First it was for her daughters and how their lives would be affected, how they wouldn't get a "normal upbringing".
Then her fears turned to Ivor and then to herself.
"The strongest grief, and it sounds really selfish, but I felt really annoyed my life was going to be so different," she said.
"Ivor is a really happy little boy. He has no medical problems per se – he's just built differently.
"He doesn't know what is going on, but me? It's really, really hard.
"When you have a child you think when they're 18 they'll go and you get your life back. When they're five or six you can read the paper again on a Sunday.
"But Ivor needs everything doing for him and always will.
"I get choked with fear and worry about how I am going to deal with it," she said. "It frightens me the sense of responsibility I will have on my shoulders but I worry about letting go at some point because I can't physically do it.
"I am quite strong, physically able – I run and cycle most days. I can move him and manoeuvre him when he's trying to pinch me or pull my hair but am I going to be able to do that in 10 or 20 years?
"I'm going to have to let someone else into my life to help with my child and that pains me more than anything," she said.
Ivor is now five. He can walk, but not far or fast, and he struggles with his balance and coordination.
He is non-verbal and frustrated when he can't communicate so lashes out physically sometimes. He is a terrible sleeper, which has repercussions for his family too.
"Ivor still keeps me awake now like a newborn and he probably will forever and that's a really hard thing to come to terms with," Sarah said.
Sarah is a property lawyer as well as lots of other labels – a wife, a runner, a mum, a friend, and more. Her life is the ultimate mum juggle.
She is speaking as part of international carers' week to shine a light on what people caring for others do on a day-to-day basis.
Ivor with his sisters. Bethan and Olwyn
(Image: Sarah Washbrook )
Sarah wakes at 6am to work for an hour before her children rise and then she must get them out of the door to school.
She specifically does daily press-ups so she can be physically stronger to carry her son.
Once the kids are up she gets them all to school – including Ivor, who is at a mainstream school.
She said: "I press shutdown on my work laptop as the children pour off the school bus – then it's round two.
"Doing things that Ivor can't – which is pretty much everything – and pedalling backwards as he pulls the books off the bookshelf, yet again, empties the cereals over the kitchen floor, draws over the table. Entwined with more appointments, meetings, forms, calls. Being there for Ivor's sisters too. Holding everything together.
"Everything is so much more complicated. We can't just pop into the supermarket. We can't just jump on the bikes for a family bike ride. Everything requires extra thought, more stuff, more money," she said.
"I often question whether I can carry on working and caring but I know that there are huge benefits for me in working – a space outside Ivor in which I can be me.
"I have no spare time for anything though. What about that survey or consultation?
"What about Ivor's blue badge application? What about those endless DLA forms?
"What about getting my discretionary trust in place? What about charity and advocacy work?
"What about fighting for some respite? What about carving out precious time for Ivor's sisters?
"I can go for days without even looking at my husband. And me? I'm afraid that's at the bottom of the list.
"It's clear I'm at max but I find it so hard to ask for help. My husband is desperate to take the weight off my shoulders but even then I struggle.
"It's complicated. I feel a deep sense of responsibility as a mother – a profound maternal need to protect and support my children in any way I possibly can. I would cut off my arms and legs and if I thought it would help.
"Maybe I can't let go, maybe I can't admit that I sometimes can't cope, and then there's the physical challenge. Ivor can walk but not far or fast – and only if he wants to – and he struggles with his balance and coordination.
"He's heavy, even as a five-year-old. I do press-ups every morning so I can carry on lifting him just for a bit longer. What will I do after this? It scares me.
"He has a very short attention span so he never stays in one place for long – I can't take my eyes off him.
"He can't follow instructions and doesn't understand the word 'no.' And there's much frustration because he's non-verbal so he pinches my face, pulls my hair, and sometimes bites me.
Sarah is speaking as part of international carers' week to make people aware of the reality of being a carer
(Image: Sarah Washbrook )
"Ivor is a terrible sleeper, which is a big part of Angelman Syndrome. It's the worst possible thing. Last night Ivor was awake for three hours and I have no idea why. When I sleep I can cope. When I don't I can't – it's as simple as that. All in all I'm pretty exhausted."
The hardest thing of all isn't any of that, she said, but the grief she feels as the mum of a profoundly disabled child.
"It still tugs painfully at my heart when I see Ivor's school friends launching into new life – such a stark contrast to my little boy.
"Then there's the confusion and worry. This big new world of disability – how do I navigate it?
"What do we need? How? The endless feeling that I should be doing more.
"Ivor is so vulnerable and dependent – that weight of responsibility sits continuously and heavily on my shoulders, driving me to fight harder, and of course the bitter anger: 'Why me?'
"Goodness knows what the future holds – it's so horribly uncertain.
"I know I'll be caring until my last breath but I don't know how. I certainly don't want to feel that I'm fighting all the time – I don't want to be that person with a chip on my shoulder.
"It's utterly exhausting but will I ever be at peace with the card I've been dealt?"
It is not, though, all bad. "There are many golden moments when I think: 'I can do this – the colour and crazy joy, perhaps it's all happened for a reason'," Sarah said.
"Ivor is an incredibly happy little boy, so utterly and simply excited by life, catching the funny side of everything, which helps us tremendously. He loves nothing more than social interaction whether that be laughing and dancing with his sisters or cuddling his way around a café.
"Of course he can't do what other five-year-olds can such as climb a tree or sing a song. But he has a very good go at it.
"Left to his own devices and with gentle pushing from us it's amazing what he can achieve. He has walked up Sugarloaf mountain near Abergavenny and scaled the steps of the Senedd Welsh Parliament to raise awareness of Angelman syndrome.
"He started at our local mainstream school in September.
"Whatever struggles we face I'm determined that Ivor's disability won't hold him back. I want our family life to be as normal and vibrant as possible, to carry on doing the things we love," she said. People will see her in Monmouth, holding his hand, as they do their shopping and will think one thing. But the reality is a mum, a carer, who is exhausted.
She hopes there will be greater understanding of what being a carer means. "There's hundreds of thousands of us across the country but it's just not talked about," she said.
The impact on her daughters was one of the biggest worries for mum Sarah
(Image: Sarah Washbrook )
Being a carer has, she said, changed her life beyond recognition. "It's given me new friendships. Slowed me down. Made me appreciate the beauty of life, the simple things.
"Stop. Look into those eyes. Hold that hand.
"It's made me more compassionate, more focused on what's important to me, and it's also given me a real purpose. I live for my children – my most important job of all.
"If we don't talk about it – the triumphs and the challenges – nobody will understand what it's like to have Angelman syndrome or to be a carer of somebody with Angelman syndrome. I don't want sympathy – well, maybe a bit – but I do need understanding.
"I need people to understand why Ivor is the way he is. Don't back off when he touches your face, don't stare at him when he shouts.
"I need my friends to understand why I'm too tired to meet up, that I'm not logging off at 3pm to go and have a cup of tea, why I can't answer work calls in the evening, why I'm so hopeful for treatments for Angelman syndrome, why I'm fighting for the recognition and support that parent carers deserve.
"I'm also hoping that my words will resonate with many parents and carers out there. Nobody understands better than somebody going through the same thing.
"I just have to look at another Angelman mum, to understand, without even the need for words. This shared experience is crucial. We need to work together, help each other.
Ivor has global developmental delay. Now five, he has the mental capacity of a child aged around one
(Image: Sarah Washbrook )
"It's this community strength that will help us achieve good things. Support. Knowledge. Education. Inspiration. Hope. Life-changing medical treatments for Angelman syndrome. This is all within our reach. Together we can do it.
"This journey as a carer and mother is not like that and it never will be. There are huge challenges – some that I've faced already and I know many more to come. One step at a time.
"Life is spinning off in a new direction. I'm determined to embrace that, to turn it into something positive and do everything I possibly can to make sure that it's as brilliant as it possibly can be.
"It's so complicated yet Ivor makes it so simple.
"I cry but he makes me laugh. I feel like my wings are clipped yet I feel energised, determined to use my voice where Ivor can't, poised to fly.
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"It's certainly a life of extremes with huge joys every day and that's what keeps me going. With strength, love, and a smile everything is possible."
To find out more about FAST UK (Foundation for Angelman Syndrome Therapeutics) go here. Carers' week runs from June 9 to 15 and you can find out more here.
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