Meet number three in the Sen bloggers. This is Charlie and she blogs over at www.ouralteredlife.com
A little something about you…. (including your disability!)
Im Charlie, 39 year old Sagittarius, sarcastic, realistic and cheeseaholic from Stoke on Trent. Im also mum to twins Oliver and Harry who are now 13 years old.
A little something about your child and their diagnosis…..
Harry was born with a rare craniofacial condition called Goldenhar Syndrome which means that he had no eye, eye socket, ear, nostril and a short jaw. Hes also autistic, non veral (although hes a real chatterbox in his own way) and has global learning delay so although hes a teenager he functions around 3 years old most of the time.
What would you wish the world would know about you or your child and or yours/ their Disability?
Lots of people know about Autism (although there are lots of misconceptions) but facial disfigurement is still a huge taboo and something that people very clearly feel uncomfortable with when they see someone who looks different. I try to raise awareness of the boy behind the face so that people stop seeing Harrys differences and see the gorgeous boy he is and the brilliant personality he has. Then, people realise they have more in common than they would have otherwise thought.
If there was one thing you’d change what would it be?
If I could change anything at all I guess I would give Harry the ability to let me know when he is hurt or upset. At the moment he cant do that and I hate the feeling of not being able to help him.
Do you think having a child with a disability (or yourself) has effected you ? Your family? Siblings ? If so How? If it’s yourself do you see it as a disability the same way as others who have children may see it.
I definitely think Harry’s diagnosis have changed me. I’m more tolerant, understanding and determined as Ive had to fight for some of his basic rights at time. Having Harry has taught me so much about who I am as a person and that perfection is a myth. My heart bursts and breaks often with love and fear for him (what will happen when I die?) but I wouldnt change him as hes such a funny and loving boy. Harry’s twin, Oliver has grown up with quite a lot of anxiety but has the most amazing heart. Hes compassionate, loyal and so very kind. I dont know whether he would have had such amazing qualities had he not had the relationship he does with his twin brother.
What’s the one thing you love about your or your child’s disability? ( Everyone always posts the negative stuff to raise the awareness !)
I love that Harry has helped me to find the beauty in everything. He makes me appreciate the little moments as well as the big ones and I love being the person who introduces him to the world and showing everyone how proud I am of him .
You can follow Charlie over on