Exhaustion, advocacy, and overwhelming love: Starting School as a VI family

For years I saw pictures of cute 4-year-old boys and girls stood on doorsteps with comments from beaming parents about their first day at school. Never once did I think this time would be one of the scariest, overwhelming, heart-breaking periods of parenthood so far. But then I didn’t know my baby would be visually impaired.

Moment to moment, I am flitting between fierce lioness prepared to fight to the death in support of my cub, to complete resignation and despair, that this is only the beginning and school is going to be a disaster of which I will not be able to cope.

After almost 18 months, my son was granted an EHCP this week…  one week before school starts. I haven’t seen the plan, and will no doubt have to appeal the contents, but after so much administration, so many knock backs, and so many tears poured into the application, I was elated to have one granted. I guess that’s where I thought the hard work would stop.

But then came the rejections from the after-school clubs, that extremely politely suggested they get to know him for a term before they knew if they could make the any necessary adjustments. The care arrangements, that rang after the first half day to say he was having such a huge meltdown over a sensory issue that they couldn’t look after him anymore. And the long summer holidays of explaining his needs and trying to advocate for him whilst keeping him as regulated as possible in new strange surroundings and constant transitions.

Every document I sent to school, I meticulously scoured, unsure if sending it in would help awareness and support for my son, or whether I would highlight a need they felt unable to meet and cause more issues.

And then I turned to my tribe. A community of over 75 parents – lets be real – mothers, whose little ones have albinism like my son. Their messages flooded in with empathy and understanding. More solidarity than solutions. A consolidatory hand on the shoulder and a tissue passed from the other side of the UK to say I was doing my best. I know that this, like every other challenge, will pass, but it’s times like these when I realise the gulf between myself and parents of neuro-typical, sighted kids.

Feeling a little less lonely, and a little more hopeful, I sit down once he and my 1-year-old are in bed, and open my laptop, to start my night shift in all the necessary disability paperwork. Instead, I look through videos of my gorgeous, funny, bright, creative, imaginative, caring little boy and realise I wouldn’t change him for the world. I can’t take away how hard he finds the world at times, but I can continue to be his regulation, the one who sees the challenges before they escalate and dives in to help, the one who knows all the amazing qualities he has to offer and celebrates them.

By Becca Rawlings 

If you would like to visit Becca’s VI awareness and support Instagram page ‘My Baby Can See’ click here!