My daughter Chloe has had a really tricky year nine. A number of different factors including a lack of specialist, and trained support staff have impacted her ability to access her learning and since the beginning of the year attend school full time.
It has caused her and the family an enormous amount of stress and a sense of powerlessness.
As a parent watching your child suffer, withdraw and know that she cannot be accommodated at school has been really tough.
Life for our children who have a low incidence disability with a huge impact can be hard. 80% of learning is visual, lessons, homework, school systems and procedures are not set up for partially sighted or severely sight impaired children.
It can feel like we are spending so much energy trying to change things, raise awareness, and ask for what our children are entitled to, to absolutely no effect whatsoever.
At the LOOK Parent Carer Support Group, the same issues tend to come up for families- exam access, inaccessible lessons, and reliance on TAs which young people struggle with the older they get.
Lack of understanding of our children’s needs, not enough Qualified Teachers for the Visually impaired or Rehabilitation officers to work with our children and young people who can open doors and give them the access to education and social opportunities they need.
We listen to each other and offer support and advice but there is a general feeling of tiredness and overwhelm at the moment which is hard to shake.
Guide Dogs #AllThingsEqual campaign.
Being part of such an important campaign, talking to MPs who had taken time out of the day to meet the dogs (and their families) was really empowering.
I was so proud as I listened to Chloe sharing her story with MPs. Her favourite was Marsha De Cordova who as a visually impaired person has her own lived experience and could identify with what Chloe said.
Will Quince (Children’s and Families Minister) came and met Quince the buddy dog, his family and others in the room including Chloe and myself.
His speech to the families that came to share their stories, Guide Dog staff and the MPs present included the importance of support for low incidence disabilities and encouraged us to respond to the SEND review.
This is key if we are going to have any chance of changing things for children and young people with visual impairment going forward.
Our children’s experience is so far removed from most of the MPs we met but I have hope that hearing from children and young people at different stages of their education had an impact.
Hearing about the frustration, isolation, and discrimination faced across the country hopefully brought things to life just as seeing Chloe’s braille timetable, highlighted for the people she shared it with, how many adaptations need to be made in order for her to access school life.
There was an incredible spokesperson at the event who I have no doubt made a lasting impression on everyone in the room. Lauren, a visually impaired adult, who has just completed her degree, spoke about her own education experience with such honesty and bravery she had everyone hanging on her every word.
I and other parents had tears in our eyes as we recognised so much in Lauren’s story that is reflected in our own children’s experiences. This is what we need to share with the SEND review.
RNIB is conducting a survey looking at how the Government should improve vision impairment education support in England. Click below to access it.
Small but mighty.
I realise this community may be small but I know it is mighty.
Guide Dogs are hoping to hold some focus groups to gather more stories in the next two weeks which will feed into the review.
It will be a chance for Visually Impaired Children and Young People (13 and over) and their parents and carers to have their say.
One of the most valuable parts of going to London and meeting the other families was that our children compared notes and understood they were not on their own.
The focus groups will be a chance not only to share your story as a family but to listen to others.
Let’s make sure we are heard!
To book onto the GuideDogs focus group click below.
Be a part of LOOK’s supportive community.
7th June Talking Parent Support Group with special guests from Guide Dogs UK.
Come and meet other Parent Carers of Children and Young People with a Visual Impairment at our Parent Carer support group.
We will be welcoming special guests from the Guide Dog Policy and Campaigns team.
Have your say about the SEND system at the moment
This is an opportunity to discuss parents’ views of the SEND Green Paper by reflecting on your experiences of the system at the moment. Areas that will be discussed are:
1. Experiences of learning being made accessible
2. Experiences of getting support for pre-school age children
3. Experiences with staff in education
As well as some of the suggestions that the Government has made in its paper. Please come along and share your experiences with the team who are gathering stories to feed into the review. Penny and Helen want to make sure your voice and the voice of your child/children are heard.