Things parents of children with special needs knew before coronavirus

I am watching the world around me confront a new reality brought by the COVID-19 pandemic. Every life lost to this virus is a tragedy and the scale of loss is devastating to the entire global community. I realise the worldwide severity of this illness and I, in no way, would or could ever rationalise or minimise that devastation.  Today, on the 22nd of May, the number of lives lost is 333,000 with over 5.1 million people found to be infected.[1] One-third of a million families grieving a loss due to COVID-19.

I am watching this unfold in Scotland as a parent of one of the one billion people[2] in the world with a disability (and as a big sister to another). I have seen my life change dramatically as a result of steps our Governments have taken to limit the loss of lives and prevent overwhelming our NHS. For one billion people who were already coping with the challenges disability created in their everyday lives and their families, things have become even harder. Until this point, I have been fortunate enough not to have anyone in my immediate family become ill or lose their life to coronavirus. That is the one thing I focus on when people ask how my family is. Commenting anything other than “well” can feel indulgent. Despite the fact we are without nursery, therapies and clinics, not to mention the circle of supportive family and friends we usually have around us, it does not occur to me to complain. It’s no one’s ‘fault’ and we work around it.

I have observed how the people around me, and the wider public have behaved through the emergence of the virus and the lockdown. I have seen my own thoughts and behaviours metamorphise as we move through the weeks. I have been shocked, saddened, angry, moved, thrilled, delighted, bored, frightened, grateful and exhausted. Like many carers, feeling all of these things in a week is not that unusual.

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Parent or friend: can we be responsible parents and liked by our toddlers?

It was Sunday afternoon and I was stressed out. I was overwhelmed, and Leo was crying. He was looking at me like I had utterly betrayed him. I cuddled him and told him I was sorry, I was just trying to help him, but I had got it wrong. How had this dramatic scene come about? I had taken him to a baby swimming class.

Leo had not been swimming this year until we went to the hotel pool last month. He had been ill, and we had been busy at weekends. He hadn’t enjoyed the hotel pool – it was cold and noisy. I knew swimming was very good for him – the water would support him, and he would enjoy greater physical freedom than he is used to. I was determined that we would get back into swimming with him.

A visit to our local leisure pool went better and I was looking forward to the swimming class. It takes place in a hydrotherapy pool which is great for his muscle tone and there would be no older kids jumping around and shrieking. I had a vision of a lovely mother and son bonding moment in a cosy pool while Leo grew confident in the water.

The reality was 30 minutes of fast-paced activities, feeling like I didn’t have enough hands and a very upset Leo. I felt quite stressed trying to keep up and I felt very guilty that Leo was having such a rotten time. At the end of the class, the stress subsided, and I felt very upset. First of all, I felt very bad that I had put Leo through such a miserable time. Then I felt disappointed that I had failed to find the right class for him. Finally, I felt demoralised. I had acted with the best of intentions and I had upset my son.

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Prematurity is… Something which will affect us, always. So, what do you do?

Saturday was World Prematurity Day and the hashtag was trending. Seeing my social media timelines filled with images that reflected our experience of having a baby, as opposed to what is the more mainstream experience, made me feel part of a very special group of families when I often feel isolated.

It was a year since I wrote my first blog on Leo’s early arrival and I reflected how so much has changed since then. Last year, I didn’t share the whole story. We were still relieved to be at home and seeing our baby thrive. We were enjoying normal baby things. We had our First Christmas coming up. I hadn’t fully allowed myself to feel the anger and grief that was circling around my head and I was still very much in the ‘taking it a day at a time’ headspace thinking that eventually, our life would plateau out.

Earlier this year I shared the information I had left out in this initial blog; our baby had suffered a brain haemorrhage and his development may be affected. On World Prematurity Day last year, I was putting my fingers in my ears saying ‘la, la, la’ and still hoping for the unlikely outcome that Leo would not be impacted by the damage caused. In fact, ‘hope’ was the theme of the blog.

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Cerebral Palsy

I have had this post in draft for a couple of months. I was waiting for the right time for our family to share it. Lately, Leo has been doing so well and we are feeling positive. We don’t shout about Leo’s disability but we don’t hide it either. It’s just something about him. I have encountered ignorance about disability (and confronted it) for almost my whole life and I think the only way to counter it is to be open about the realities. If you understand someone’s journey then you will have more empathy. This morning I learned it was World Cerebral Palsy Day and I felt that it was the time to share this post. I am a lot less angry now than I was when I wrote it.

I know that people reading this will be from all walks of life, will do lots of different types of jobs and will have their own challenges to deal with. I hope that reading this will make them mindful that they don’t know what people are dealing with in life and that kindness should always be the default response when faced with someone different from you.

***

This summer, exactly a year to the day we were given the devastating news that our son’s brain scan was showing evidence of a brain haemorrhage, it was confirmed that he has Hemiplegic Cerebral Palsy. That means the right side of his body is impaired by the damage done to his brain. We knew this was a possible outcome but had remained optimistic. The signs over the last few months had been hard to ignore and my fears of these two words were realised.

Leo, the boy who had overcome all the odds to be born at 25 weeks and 5 days and not only survive, but thrive, breathing independently and requiring only dietary supplements on discharge from hospital three weeks before his due date. Leo, our baby who one week before his due date was undergoing surgery so a neurosurgeon could fit a shunt that would drain excess fluid that wasn’t been absorbed in the ventricles – another side effect brought about the bleeding on his brain. Leo, the amazing child who got through his first winter without a single bug. Fate was not yet done with Leo.

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