![\"An](\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/03\/Ben-Sense-Friendship-83-1024x684.jpg\")
Having confidence in myself as a mother<\/h2>\n\n\n\n
From the moment they were diagnosed, isolation and discrimination became part of life. People were much more closed-minded about disability then, even health care professionals. They didn\u2019t see their abilities, just their disabilities.<\/p>\n\n\n\n
This was also a time when it wasn\u2019t acceptable to disagree with your doctor. So even though both my sons had been born with their sensory impairments, it was a long struggle to get the right assessments and diagnoses. <\/p>\n\n\n\n
The first year of Luke\u2019s life was an absolute nightmare. I knew there was something wrong \u2013 he cried incessantly. But the hospital treated me abominably and I wouldn’t take my concerns seriously. I remember being in the children\u2019s ward on a Saturday and the consultant told me, \u201cThere is nothing wrong with your child, you\u2019re just a neurotic mother.\u201d<\/p>\n\n\n\n
It was really hard. I used to wake up in the morning worried that Luke would be dead. It wasn’t until he was 10 years old that he was identified as deafblind.
With Ben, he was identified as being profoundly deaf at age 2, but his eye condition wasn’t spotted until he was a teenager. <\/p>\n\n\n\n
Finding Sense was such a relief. They gave me reassurance that my sons did have additional needs. But also, that there was so much they could do.<\/p>\n\n\n\n
Using my experience to help others<\/h2>\n\n\n\n
In the mid-1990s, I joined the Sense Council so that I could give something back to the organisation that helped me so much. It was here that the vision for Sense International was first shared. I wanted to get involved because I felt that I understood the discrimination being faced by families in other parts of the world.<\/p>\n\n\n\n
When the first overseas conference on deafblindness was set up in India, I was asked to go. I knew my experience of being a mother to children who were deafblind was important to share.<\/p>\n\n\n\n
I wanted to help parents understand their power, to have confidence in their influence to make life better for their children. Never give up.<\/p>\n\n\n\n
With Sense\u2019s help, I also felt that I could give parents a chance to see their children as children again. Sometimes, we work so hard to support them that we stop appreciating those special years.<\/p>\n\n\n\n
My advice for new mothers<\/h2>\n\n\n\n
This is sort of an extension on the last point, but I found it hard to let my kids be naughty. I\u2019d been so focused on their difficult behaviours, wanting them to be good and be safe. It wasn\u2019t until Ben was an adult, when I saw him and his sister-in-law messing about with an electric recliner, that I realised I hadn\u2019t always let him have those moments of play as a boy.<\/p>\n\n\n\n
And I would encourage all mothers of children with complex disabilities to learn about your rights! I think Sense can help people here.<\/p>\n\n\n\n
Need advice? Talk to Sense.<\/strong><\/p>\n\n\n\n Contact us for free and impartial information about living with complex disabilities, including deafblindness.<\/p>\n\n\n\n