It's Carers Week this week and when I first entered the world of being a parent carer in 2021 after my son had his first seizure, I was overwhelmed and felt very alone. The initial shock of his epilepsy diagnosis quickly propelled me into research mode, and every day since I strive to understand his brain whilst navigating the rollercoaster that is being a parent carer. If you are at the start of this journey, like I was four years ago, here are some key insights and tips to help you effectively advocate for your child's rights and support.
The Importance of Understanding Sensory Needs
Children with sensory processing differences often experience the world in unique ways. These differences can significantly impact their daily lives, learning, and interactions. As parents, understanding your child's sensory needs is crucial. It not only helps you to create supportive environments but also equips you with the knowledge to advocate for their needs effectively to school and other professionals you meet with.
When my son started showing signs of sensory processing differences, I knew I needed to gather as much information as possible. Over the years I began by collecting all relevant documentation related to his needs, including assessment reports, medical records, and previous educational plans. If you're at the start of your journey, you might not have a lot of documentation yet. In that case, try writing down a day in the life of your child, detailing everything you do to support them, such as using visuals for morning routines or specific tools to help with sensory needs.
Building Confidence in Advocacy
One of the most challenging aspects of being a parent carer is advocating for your child's needs and it is this constant chasing and fighting to get his needs supported that has taken the biggest toll on my mental health. I remember feeling worried to disagree with what others said and unsure of how to approach teachers and other professionals. However, gaining confidence in advocating for your child is essential. It ensures that their needs are met and their rights are upheld.
A critical step in building this confidence is familiarising yourself with SEND law, policies, and guidelines governing the provision of special education and support services. Understanding your child's legal rights and entitlements, including access to assessments, accommodations, and educational placements, empowers you to speak up effectively. Organizations like IPSEA offer valuable resources and training. For example, I’m currently doing Level 2 in SEND Law, which has been incredibly beneficial.
Effective Communication and Record-Keeping
Maintaining regular communication with individuals who spend time with your child or influence decisions about their support is vital. This includes teachers, SENCOs, school administrators, activity leaders, and local authority representatives. Don't hesitate to be 'that parent' who consistently follows up to ensure your child gets the support they need.
Keeping thorough records of all communications, decisions, and agreements made regarding your child's education and support is another vital aspect.
I have a folder set up in my email and on my computer with all the correspondence related to my son, including medical appointments, school emails, and local authority communications. This documentation is invaluable if you need to dispute a decision, which, unfortunately, happens more often than we'd like.
How the "Be a Strong Sensory Advocate" Programme Can Help
At The Super Sensory Squad, we want to take as much stress, overwhelm, and confusion out of discussing your child's sensory needs as possible. Our brand new programme, "Be a Strong Sensory Advocate," is designed to help you understand sensory needs, develop regulation strategies, and build the confidence needed to advocate effectively.
Throughout this transformative 4-week programme, you will follow a simple process to help you get a clear thought pattern, even when you might be feeling triggered. Week by week, you'll receive recorded training sessions to watch at your convenience, along with practical tools needed for that week.
The live sessions with Kate Grayson, an experienced Occupational Therapist, and myself, Nicole Bateman, an Educator, Author, and Mum of a child with sensory processing differences, provide an opportunity to connect with other parents and discuss your learning and findings. These sessions will help you individualise the knowledge for your child's sensory preferences, enabling you to share it with family members and professionals for a holistic, proactive approach to support.
Practical Tools and Support
Participants in the programme will receive a wealth of practical tools to use straight away, including:
Email templates to personalise and send to school
Sensory regulation cards and a sensory zone schedule with examples of calming, alerting, and organising activities
Sensory checklist and reasonable adjustment sheets
Communication log and Excel spreadsheet for organisation tracking
Advocacy plan tailored to your child’s needs
These resources, combined with live input and recorded training, will help you feel empowered to discuss your child's sensory preferences with anyone.
Join Us and Feel Supported
We want you to be supported every step of the way and come away with concrete steps and a thorough plan to move support for your child forward at school. Our "Be a Strong Sensory Advocate" programme starts on June 17th for only £97. Join us and become a confident advocate for your child's sensory needs.
Remember that you don't have to do it alone. Connect with other parents, gain practical strategies, and build the confidence you need to ensure your child's needs are met. For more information and to sign up, have a look here.
Together, we can make a difference in our children's lives.
