Guide Dogs have a number of services available to children and young people that offer help and support families.
When Aggie and Robert’s little boy Max was six weeks old, they were told by their health visitor to expect a smile soon. Weeks went by and still the smile did not materialise.
Aggie says: “I had that weird feeling that my child was in a world of his own, somehow behind glass and he was not ‘seeing’ me. I didn’t think he wasn’t actually able to see me, that didn’t cross my mind at this stage, but I did feel as though he was somehow unreachable.”
A few months full of uncertainty went by before Max could see a paediatrician. On examining Max, the paediatrician noticed his involuntary horizontal eye movement and subsequently Max was referred to an ophthalmologist.
Upon meeting with the ophthalmologist, Max was diagnosed with Congenital Idiopathic Nystagmus.
Aggie and Robert sought out any information and support they could find. Through networking at an event specific to Max’s condition, Aggie met with a Guide Dogs staff member and was given the number for Guide Dogs children and young people’s services.
Guide Dogs’ advice line for parents of a child with a visual impairment offers information, advice and guidance ranging from general family support to advice on education, mobility and independence skills training and access to technology and grants to specific guidance for families with a recent diagnosis of a vision impairment.
At this point, Guide Dogs put Aggie and Robert in contact with another parent of a child with the same type of Nystagmus and invited them to various Guide Dogs Family Days Out events.
Guide Dogs Family Days Out events are a great way for parents to meet with others in a similar situation, while children and their siblings have fun and socialise. There are trained members of Guide Dogs children and young people’s services at every event to give advice and support
Aggie says: “I soon realised there was so much support available to us. It was uplifting and gave us hope. I met many families with far more complex needs then Max’s and found them absolutely inspirational.”
Right now, Max’s vision is gradually improving. Aggie and Robert work to give him as many opportunities to stimulate his sight as possible.
She continues: “Max has become more and more curious about the world around him. There is nothing stopping him now. He has the most precious smile.”
Aggie and Robert know there are a lot of challenges that they could face in future, but Aggie says: “We are determined to never let him feel different or in any way disadvantaged than any other child.”
“It was a relief talking to somebody who could fully understand me, that could (and still can), guide me on this journey.