I recently “met” this week’s #MumdayMonday , Emma, in rather excruciating (for me) circumstances on IG. She bravely challenged me about language that I had used in my post Advice you really need. I was horrified by my insensitivity and instantly apologised but she had really got me thinking. I am a total geek when it comes to words and where they come from and yet I had not given a second’s thought as to the origins of the word I so casually tossed out there to describe someone who had annoyed me. I had hurt someone’s feelings, deeply. And I had disrespected someone else. How many times are mums like Emma offended on a daily basis because the world doesn’t understand, or just doesn’t THINK about the challenges that are presented to her as the mother of a son with severe Special Needs? How many times are children like her son, Ted, disrespected and devalued? So this week, Emma is The Mum on a Mission. What is her quest? To challenge the language we use and to make Ted’s life as full and meaningful as she can.
Emma has recently won the third prize in a writing competition with @motherlandnet where she wrote an “astonishingly beautiful piece” about mothering a disabled child. Emma also writes a blog called Treatment for Ted , and you can follow her on Instagram @mrs_emma_haines .
I used to work in women’s magazines before I left to care for my son. I say ‘care for’ as it’s more than just regular mumming. Ted is three and a half and, thanks to a brain injury (HIE – Hypoxic Ischaemic Encephalopathy) at birth, is severely disabled. He needs 24-hour care, as all kids do, I suppose, but, like a newborn, he is totally dependent on us for everything he does. Ted has quadriplegic (four-limb) cerebral palsy, caused by a prolonged lack of oxygen at birth. It affects the muscles of his whole body, broadly meaning he is either too stiff or too floppy, sometimes both at once, and has issues with swallowing, eating and drinking. He also struggles to control his body and has a lot of unwanted movements, so he needs a lot of help with everything he does. He is unlikely to ever walk or talk.
There are many challenges to parenting a child with disabilities but generally speaking the biggest one was the mental adjustment of accepting that our child was going to be disabled, facing multiple life-long challenges and we were powerless to do anything about it.
Getting that diagnosis was nothing short of devastating. The neonatologist who delivered the news didn’t sugar-coat it and it was a slap in the face to realise Ted wouldn’t be that ‘miracle child’ everyone tells you stories about. The one who defies all odds and somehow fights back from a devastating brain injury to be completely unscathed.
In the beginning, that’s all I wanted. It was very black and white: complete recovery was the only place I could see myself and our family being happy. The guilt was enormous and all pervading not just because of the overwhelming sense that I had failed him by not keeping him safe in labour, but also because I was lucky that he had survived, yet here I was wanting a different son, a healthy child. I felt guilt that my sadness seemed to suggest Ted was somehow lesser than a ‘perfect’ baby, that disability made him less loveable or less wanted. But it’s a grieving process. I needed to mourn the child we thought we would have before I could fully love the one we were given.
As time went on, we began to see him as Ted, not as a bunch of labels and diagnoses. As we couldn’t ‘fix’ him (I know how awful that sounds, but subconsciously I wanted to), we had to find a way to be happy.
As I got to know Ted over his first few months, I began to see his struggles as part of him, much like personality quirks. Once we loved and accepted him for who he is, not who we wanted him to be, life was easier. That’s the same for any parent I think, we grow and shape our children but ultimately we cannot control who they are or how they live their lives and that can be a challenge.
Despite all of the challenges, I will never tire of the sound of Ted laughing. Sometimes the most unexpected things will make him giggle – watching someone jumping into a swimming pool, people arguing on Frasier – but it is a sound to melt the iciest of hearts.
Since moving from SE London it is other simple things that I really enjoy. I do miss London and my community, especially as I now realise loads of my favourite Instamums live in my old manor. Plus, there’s A LOT more cool stuff going on there than there is in Wiltshire. But the slower pace of life has been good for us all. I love just pottering around the garden at home or having little days out as a family, especially involving walks and good coffee and cake.
I did briefly return to work after maternity leave but between juggling appointments with all his various therapists and recovering from the trauma of this life-changing event, I found it hard to focus on work, much less care enough about fashion and beauty to actually do my job to the standard I used to.
Our move to Wiltshire was influenced by my desire to focus on Ted’s therapies and while it’s the not the most exciting town, we have amazing family support and life is good. Rik still goes to London for meetings and events and has a huge shed to work in so he’s pleased. I am mainly just tired, but that’s what almost four years of broken nights will do to you. We also have a six-month-old daughter, Bedelia, who’s currently not helping with the broken nights thing. Everything about having her is different to Ted – she’s breastfeeding, crawling, eating properly solid foods… It’s beautiful and lovely, but exhausting in its own way.
Maybe it’s the sleep deprivation, but there are so many things that make me angry these days. I get completely incensed by other people’s lack of respect and understanding for the disabled. I have a strong sense of needing to do the right thing by those less able to fight their own battles. It’s giving me a reason to be more assertive and speak my mind so I guess it’s a good thing. I feel like I’m starting to find my voice and get my advocate’s hat on.
Able-bodied people parking in blue badge spaces makes me SO mad. The amount of times I see it is unreal. I was at a garage recently and decided not use the space because I wasn’t getting Ted out of the car, but two fit healthy people, IN WORKOUT GEAR pulled in there instead and hopped out to go to the shop. People seem to have the attitude that it’s OK because they’ll only be a minute but that’s no excuse! If you don’t have a badge, don’t park there. That ‘minute’ could be the exact one that a disabled person needs the space. I’ve had to ask a couple of the mums at nursery to move as I need to park there. I try not to be confrontational; I just feel it’s my duty to point out that they are using a much-needed space. It’s not gone down well so far..
While life is undeniably better than it was even 20 years ago for people with disabilities, there is still so far to go. I’d like to see the tide turn against words like ‘spazz’ and ‘retard’. Often words have been around so long, we don’t think of what they actually mean when we say them, I get that, I really do. I’ve done it myself. But now, as the mother of a ‘spastic’, I see how important it is to think about our language in order to stop perpetuating discrimination and making vulnerable people the butt of jokes. Anyone with any sense of decency wouldn’t use racist language or label something ‘gay’ when they want to be derogatory, so I’d like ‘retarded’ to attract the same disdain. I know in the US it gets used much more and ‘getting retarded’ is another way of saying getting fucked up on drugs and/or booze. As our language becomes more Americanised all the time, I hope we don’t follow suit here. It’s a deeply offensive word to me and I’m not afraid to point it out to people. Well, actually, I am afraid but I’m learning to do it.
I’m also learning to not be afraid of the future and to live in the moment. My dad is an eternal optimist, which isn’t always helpful when you are feeling all the feels, but when he advised me to take each day as it comes and not to look into the future, he was right. In the early days I would fall into a black hole of worrying about Ted: seizures, surgery, wheelchairs, hospital admissions… It made the future feel like a horrible scary place. But as no one knows what’s in the future, worrying is wasted energy. I just try to not look too far ahead and deal with problems as they arise.
Over the last three and a half years I have received all kinds of advice, however, that I would like to file under ‘F’. Anything along the lines of ‘God gives special kids to special people’ or ‘you only get given what you can handle’ Er, no. My birth went wrong and my child’s brain was ruined. That doesn’t make me special. It just makes me the mum of a kid with special needs.
If you find yourself with friends or family in our position, the advice I would give to you is 1. Avoid saying any of the above but also 2. Offer to help on a practical level. The most useful thing my amazing friends and family do for us is taking the kids for a walk so I can have a sleep. I appreciate it when they help us to be as normal as possible. Respecting the way we parent is important, although I know our parents don’t always understand why we do certain things, which can be difficult. That goes for what we do with both Ted and Dilly. We also need them to respect our therapy choices and Ted’s routine. It’s really unhelpful if that gets messed up by people dropping round or phoning at inopportune times. He needs quite a strict schedule, which is easily thrown out by well-meaning visits, causing more upset than you might think! Boring but true.
Nowadays, when I look back at the beginning of this journey, I want to tell myself that all of that fear, sadness and pain in your heart doesn’t need to be there. The future is not black or bleak. Things will get easier. You won’t have the family life you imagined, but you WILL be happy. Ted will be happy. His life will be full of joy and love and fun. He will surprise and amaze you and just because he can’t say the words, you will know how much he loves you and nothing will ever break that bond.