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Educate Yourself, Fight for their Rights

by Trudie Graham

My name is Trudie Graham I am 50 years old and I am a mother of two beautiful boys Theo age 19 and Ruben age 13. I am a qualified hairdresser by trade and have been a Deputy Care Manager for the charity Sense, supporting people with sensory loss and complex needs for 22 years.   

From hair to care

I left school with hopes to become a hairdresser and successfully gained City & Guilds in hairdressing at the age of 17. I moved into barber work and built up a relationship with a regular gent that was hearing impaired and used British Sign Language as his first language. I managed to cut his hair to his liking but I always felt a sense of frustration trying to communicate effectively with him. This motivated me to go to night school and study British Sign Language. I found that I was quite a natural communicator and was flourishing. Within two years I was a competent Level Two signer.

I then felt the urge to seek a career using my BSL skills and came across Sense. Working with Sense allowed me to support people with sensory loss and continue to progress with my signing.

I then had my eldest son, Theo in 2001. Due to child care needs, I started to look at other roles where I could work around child care. I was fortunate to get a promotion as a care manager and went from supporting hearing impaired people with complex needs, to managing a staff team and recruiting staff that were hearing impaired.

Fight or flight

In 2007 I gave birth to my youngest son Ruben and thought this would be my complete family. I was very happy and content even though I had suffered a terrible birth. But then a mother’s worst nightmare started to unfold. My son was not focusing; after several visits to the doctors and constant conversations with my midwife, I was told that everything was fine and that I may have postnatal depression.

At about 8 weeks, I knew that Ruben was responsive but he was not looking. I went to see my GP again, and after an emotional plea I was referred to a children’s hospital. This is when I was presented with the devastating news that Ruben had visual difficulties but the extent was unknown. My whole world almost fell apart and I felt completely alone.

It was a long 7 months later that I managed to get a referral to Moorfields Eye Hospital in London where Ruben was diagnosed with a rare genetic condition called LCA (Lebers Congenital Amaurosis). This is a condition that causes total loss of vision. I was told to take Ruben home and raise him as a blind child.

Following this I was beside myself. I could either let myself drown into a deep depression or pull myself together and fight for my baby and get the best support available.

Efforts at coping

I set up a blog which helped me to cope mentally day-to-day. I also started networking with other families whose children had been affected with this awful, incurable disease. At this moment in time, I was extremely vulnerable and open to predators that would prey on parents that thought there was a cure.

I was researching possible treatments around the World. At one point I was ready to sell my house and take Ruben abroad to have gene therapy, which I was told would restore his sight. Thankfully with professional support from the team at Great Ormond Street Hospital, I was convinced that this was not going to be an option and I had to accept that it was highly unlikely that a treatment for Reuben would be found within my lifetime.

I continued to network and came across many families in similar situations. Although I was a very proactive parent, there did come a time when I hit rock bottom and ended up with post-traumatic stress when Ruben was around 7 years old. Not only was I struggling, but Ruben was also struggling with school.

Reuben was in a mainstream school with resources for visually impaired children. He initially seemed happy but in Year 1 we started to see changes in Ruben’s behaviour. The school was unable to meet Ruben’s needs and things were going from bad to worse. Ruben was labelled as a ‘naughty child’. 

I was desperate to find another education provider that could meet Ruben’s needs. I had to fight for several assessments, both in Birmingham and further afield in London. Within a year Ruben was diagnosed with Autism. Eventually he was moved to a specialist school where he is now thriving.

The Impact on family

I know my experience has had a massive impact on my family.  My eldest son Theo was 7 when Ruben was born. All the years of fighting for Ruben, travelling to medical appointments, dealing with behavioural difficulties, and learning to understand Autism meant Theo has lost years of my time.  He had to grow up fast and I never realised at the time how this may have impacted him. Thankfully, Theo has grown into a mature young man. The stresses and strains also had an impact on my relationship with Ruben’s father and we separated when Ruben was 10.

My life experience has most definitely made me a stronger person and helped me in my current role to become an expert by experience. It also has given me an understanding of how other parents and siblings feel when having to place their children into the care of others.

My advice to anyone who becomes a carer for a loved one is to not give in. Research, educate yourself, fight for their rights, be heard, reach out to friends and family and other support services. For me, it’s a privilege to have my sons.

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