Community Tips for Navigating School Support for Disabled Children📚️✍️

Mary_Scope

If you could go back in time to when you first started navigating school support for your child, what’s one piece of advice you’d give yourself?

And if you're not a parent but navigated the education system as a disabled young person, what’s something you wish someone had told your family that would've helped you get more support in school?😊

Mary_Scope

Mine would be…it is totally okay (and usually necessary!) to ask for something more than once, whether that is a meeting or a reasonable adjustment etc.

SaraC_Scope

Mine would be: To ask for a different way to partake in PE or sport. And to not feel guilty for taking longer to complete work.

mark141175

If I could go back, the one piece of advice I would give myself is trust your parental instincts, know your child’s rights and never be afraid to challenge the system when your child’s safety, mental health and wellbeing are at risk.

When I first started navigating school support for my daughter, who is autistic and has an EHCP, I genuinely believed schools, professionals and the local authority would work together to support her, protect her and ensure she received the education she deserved.

Unfortunately, my experience has been very different. My daughter has experienced two school placements where, despite my repeated concerns, she was not adequately protected from bullying and harm. I watched her mental health deteriorate to the point where I had to make the difficult decision not to send her back into environments I believed were causing further harm.

Rather than receiving the understanding and support I expected, I found myself facing attendance pressure and warnings about potential fines. I refused to be intimidated into sending my daughter somewhere I genuinely believed she was unsafe.

I’ve learned that having an EHCP doesn’t automatically mean your child’s needs will be met or that professionals will always make the right decisions.

My advice to other parents would be to document everything, communicate concerns in writing, understand your child’s legal rights, question decisions you disagree with and never accept promises of support without evidence of action.

Most importantly, listen to your child and recognise what professionals may not see. A child who appears to be coping in school may be masking enormous distress, which only becomes apparent when they are safely back at home.

I have spent years fighting for my daughter’s safety, education and wellbeing when I should have been able to rely on the professionals responsible for supporting her.

No parent should have to choose between their child’s education and their mental health. Every child deserves both.

If sharing my experiences and what I’ve learned helps even one parent recognise their child’s needs, understand their rights or feel more confident challenging decisions, then something positive can come from what my daughter and I have been through.

Mary_Scope

Thank you for sharing @SaraC_Scope, feeling not guilty for taking a bit longer is great advice! Do you have any tips on how to stop feeling guilty?

Thank you for sharing too @mark141175! That is some brilliant advice, parent instincts are so important. How are you and your daughter doing at the moment?

SaraC_Scope

@Mary_Scope It took me a long time to understand that asking for help in school and in life wasn't something I should be ashamed of. I carried that guilt of being seen as different and a problem for many years.

But then I met a group of people from the epilepsy and cerebral palsy community who showed me asking for help is not a sign of weakness. I'm not defined by my disabilities, I just need additional time to process information or access to visual resources to refer to when needed.

We need to change other people's perceptions of disability and make school and social settings a more inclusive space.

Mary_Scope

Me again @mark141175. I've just created a new discussion about fines for school absences that you may be interested in😊

forgoodnesssake

A simple thing really but proved incredibly useful, time and time again and it was advice given by another parent of a slightly older disabled child: keep a journal/log of all significant meetings, phone calls etc with dates and names. yes it can be a little bit time consuming but even just header points will be a very useful resource. We kept 2 notebooks, one for education and one for Social Services.