Being a deafblind parent: expectation Vs reality

Before my daughter was born, I thought I had a clear idea of what parenthood would look like. Like many parents-to-be, I had plans. But becoming a deafblind parent showed me that reality doesn’t always follow the plans we carefully make

Being a deafblind parent has been the most rewarding yet challenging journey, completely different to what I could ever have imagined. Like a lot of parents, I had ideas of what parenthood would look like; for me this was a world where my child would always eat healthy food, not watch too much TV and not have chocolate until they were at least one! I am a planner and an organiser, and as a deafblind mother, I felt that I had put some good plans in place – I had started planning about two years before my daughter was born by looking at how I could do tasks like changing nappies, going out for a walk with my child, and generally working out how I could do everything else that other parents did.

I was an independent woman with a professional job, and even though I had to put much more effort into tasks than the average person, I didn’t doubt that I could overcome any obstacles that came my way. What I didn’t realise at the time was that the first obstacle I had to overcome was myself. I had been brought up in a society where I was taught to tell people that I was ‘registered blind’ or ‘visually impaired’ but that I could and must achieve everything that people without a disability could achieve — I just had to work harder. The ‘norm’ at the time was never to complain and to ‘just get on with it’.

I very much had the belief that I had to prove myself and prove to myself and others that I was just as good, valuable and capable as anyone without a disability. Whilst I agree that working hard and having a positive attitude are good values to have, I have learnt that balance is needed. I had lived my life up until that point not fully accepting that I had a disability. I would tell people that I was ‘visually impaired’ but I didn’t really understand what this meant for me as a person or how this fitted into my identity.

I strongly resisted asking for help and support and I remember proudly telling a lady on the bus who asked me what support I had that I didn’t have any support. I was on my way into town with my young baby daughter. I was using a white cane as I was on the waiting list for a Guide Dog at the time, and I pulled the pram behind me.

Applying for a Guide Dog was a huge step forward for me, as in the past I hadn’t wanted anyone to notice that I was ‘visually impaired’ unless I felt I had to tell them. As a family member pointed out to me, having a Guide Dog would actually mean that people would know I was visually impaired. This had put me off applying for a Guide Dog in the past.

So, at that point in time, when I was on the bus with my daughter, I had already taken a significant step in my journey by applying for a Guide Dog, but I was still very proud of the fact that I felt I did not need any support from Support Workers. I was determined to be independent and ‘prove that I was just as good and capable as anyone who didn’t have a disability’.

Due to the bus times in our area, a round trip into town would take around five hours. With a young baby this was exhausting. On top of this, my vision and hearing loss meant that I had two unreliable senses that were trying to rely on each other. My brain was trying to put a jigsaw puzzle together every time I would hear or see something, but with fragmented, unreliable information. I was exhausted, and this was also very isolating as I never really knew what was going on around me.

This was the ‘norm’ for me as I was born deafblind. I had tried to tell someone a few years before that I was exhausted, but they told me to ‘get over it’ and that ‘other people are a lot worse off’, or words to that effect. So I did. I just got on with my life.

Having my daughter completely changed my perspective. It wasn’t just about me anymore and I would do anything for her. I can’t describe the love and the strength of that love that I felt for her, and then for my son when he was born. It was completely different from anything I’d ever experienced. I knew I was a very strong person but I didn’t realise how strong and resilient I was until my children were born. The love I have for them changed me. I wanted them to have an amazing childhood, and I was willing to do anything to make that happen. My identity had now changed. I was now ‘mum’ and it felt right, it felt amazing.

When my daughter was a few months old, I joined a Facebook group for blind mums, which was the first contact I had had with other blind people since school. Through being in that group, I realised that other people had had similar experiences to me, and I found people who I could relate to.

I had been trying to get the bus times increased through my MP when my daughter was around three months old, and I thought that would be the answer. However, from being a part of the Facebook group for blind mums, I found out that other people who were blind received support.

Maybe it was ok after all to ask for help? Maybe it didn’t mean that there was ‘something wrong with me’ or that I was a failure?

That realisation marked the beginning of a new journey — one where I would start to question what independence really meant, and whether accepting the right support might actually help me to be the parent I wanted to be.