Nicki and I are both parents of children with special needs and are part of a supportive online community with others who really ‘get’ each others different lives. Today though Nicki is sharing a different aspect of her life. I’ll let her explain…
My Story ~ An interview with Nicki Perrins
Thanks very much for agreeing to be interviewed for the website. Can you start by letting the readers know your name, age and where you’re based please ?
Hi I’m Nicki, I’m 35 and I live in a small town in Worcestershire.
Fab. Thanks Nicki. Everyone interviewed on the site has some connection with facial disfigurement/ visible difference. Can I first ask which term (if any) you tend to use and what connection you have?
I’ve used facial disfigurement for as long as I can remember, I was born with Facial Palsy.
And what does that mean to people who have never heard the term before?
I was born without a facial nerve in the left-hand side of my face, this means that my left-hand side of my face is weaker than my right side, my mouth drooped down more as a baby and into childhood but, muscles became stronger as I reached adulthood. The biggest problem I have is that I do find it difficult to smile. I may be really happy inside by due to my facial palsy (or paralysis) I often am told to “smile” or in the past “why do you look miserable all the time?”
OUCH! Who would ask that?? A little ray of sunshine I bet ?.
I get asked quite a lot “have you had a stroke?” And I have to explain that I was born with Facial Palsy
My mum took me to a facial disfigurement clinic as a baby but there wasn’t a lot of information back in 1982 when I was born. More research has been done today. Anyone wanting to know can read this link as it’s such clear information.
Do you think it had an impact on you as a child?
A huge impact, I didn’t hold my head up to look at people directly as I feared they would stare at me and judge me, the other kids, even at the age of 5 used to ask me “what’s wrong with your mouth?” I was bullied as a child and into my teenage years ? other children used to mimic the way I smiled ? I was also ‘selective mute’ at primary school as I didn’t want to draw attention to myself, I only spoke at Home where I felt safe
Oh Nicki thats awful. How did you cope with that? Did teachers help at all?
I stayed silent a lot of the times, I was too afraid to tell anyone as I thought I’d get bullied more. I can remember my mum going into my primary school a few times to explain that children had been calling me names.
And what was the response? Did it help at all?
Sadly it carried on, in the 1980s/1990s there wasn’t as much awareness or acceptance that there is today of differences. And it only got worse in high school. I would try and get off school saying I was ill to avoid going into school to avoid the bullies
Did you have any close friends to rely on or to make you feel included?
I had a very close friend from the age of 9, and she protected me from the bullies and used to tell them to back off! She’s still my friend now and is actually now also my sister in law!
Aaaaaahhh I love that!!!
I was a lot taller than the other kids in high school, I had my facial palsy and also a very bad case of acne. I was also undiagnosed as autistic, I didn’t get my diagnosis until March ‘18 at the age of 35, so I felt I stuck out and was an easy target for the bullies. I also had a lot of paranoia around my nose and wanted plastic surgery from the age of 14
Wow so you had a really rough time. Other than having an awesome friend to count on, can you think of anything else that you did that helped you to cope and get through those years?
I loved my art and craft work, the art room at school was my sanctuary. It was like my therapy and relieved a lot of stress for me. I also loved childcare and this led me to my 13 year career in working with early years children. I really liked my childcare teacher she was really kind to me. I loved babysitting my younger cousins and children in the village where I lived. I have always found that children don’t judge me, they just wanted me to interact with them ? at the age of 18 I started working in a local garage and started to give eye contact. I built up a lot of confidence when talking to the locals. I also went to University at the age of 18. This was my biggest challenge but also a huge confidence builder as I met lots of different people from different backgrounds and found that people just accepted me for who I was ?
That’s brilliant and I love that you say you started with eye contact and built up from there. Did you find that you thought less about your nose as your confidence improved or was that still something you wanted to change?
It’s when I left university and started my full-time job in a large primary school, I was so busy that I slowly forgot about changing my appearance. The biggest thing for me was having my 2 girls as I no longer fixated on my appearance, my 2 girls love me for who I am and I don’t feel so paranoid since I’ve had my girls
So a place of inner peace has given you some self acceptance now?
Definitely, I didn’t let my paranoia take over me, as I learned that I could lead my life and reach my goals no matter what I looked like.
Brilliant! So fill me in on the hubby! How did your best friends brother become your boyfriend and how did you feel about a relationship when you were so self-conscious?
I’ve always struggled with confidence in relationships, but it was my best friend and her boyfriend that set me up on a blind date with his brother! I was nervous with it being a blind date and did feel a bit paranoid when I’m nervous I talk a lot! So I talked and talked and talked! And I must have made an impression as he asked for a second date! Paul is extremely accepting of me and so understanding, we understand each other so well, we both struggle with confidence in social situations, Paul has moderate learning difficulties so he also went through a lot so we just ‘get’ each other ? we’ve been together 8 years this October ?
I think it makes a huge difference to find people who ‘get it’ and your situation. So your best friend married his brother? And you’re the closest 4some in the world? ?
Yes ,that’s right, We just clicked from the first time we met ? yes they got married in 2016 and we’re getting married in 2020 ? Exciting times!!
As you have got older have you accessed any support from groups or others with facial palsy?
I was amazed to find a Facebook group specifically for those who were born or developed childhood Facial Palsy. I’d never spoken to another person with Facial Palsy before. There were so many members of the group who I could identify with. There are a few groups for ‘Bells Palsy’ but this is different in that anyone can develop Bells at any point in their life, whereas my type of Facial Palsy was present from birth. I’ve also learned a lot from the charity ‘Facial Palsy UK’
Just to clarify, facial palsy is always congenital and bells palsy is acquired? Or can you develop facial palsy when you are older?
Here are all the causes of facial palsy :
Viral infections such as Bell’s palsy and Ramsay Hunt syndrome.
Surgical causes: for example during removal of a facial nerve tumour.
Bacterial causes such as Lyme disease or following a middle ear infection.
Neurological conditions such as Neurofibromatosis 2, or Guillain-Barré syndrome.
Traumatic injury such as fractures to the brain, skull or face.
Birth trauma: for example caused by forceps or facial presentation delivery.
Congenital conditions such as an abnormal development of the facial nerve or muscle in the womb.
Rare genetic syndromes such as Moebius syndrome or CHARGE syndrome.
Stroke: although a stroke can cause facial palsy it is slightly different in that the problems are not caused by direct damage to the facial nerve. The paralysis, in this case, is caused by brain damage and the messages not being transferred properly to the facial nerve.
Ok wow! Loads of info there. Thanks
If you could go back in time to your younger self now, what would you say?
Great question! Be yourself! Don’t not let what others say or think of you define you. And to celebrate your differences. My mum used to tell me as a child “if we were all the same, the world would be a boring place,” so I’ve carried this throughout my life ?
And what would your top tips be for anyone now who is struggling to be accepted because of a visible difference?
However hard it is, not to suffer in silence, tell someone close or a teacher they trust.
– to find a safe place, this is one thing I wished I’d had at school. Somewhere I could go if being on the playground got too overwhelming.
– to find your tribe! To find those people who will accept you for who you are
Fantastic advice Nicki! Thanks so much for your time. What’s the best way for people to get in touch with you if they want to?
Thank you. My email address is firstname.lastname@example.org and I blog over at www.spectrumgirls2.com