Need to know: Becoming your child’s best advocate
You have probably concluded that for your child to succeed in school, in extracurricular activities, in the community, and in accessing healthcare, you have to become their greatest advocate. When your child has neurodevelopmental differences or a learning disability, advocating for their needs becomes an essential part of your role as a parent. As an advocate, you have the power to make a significant difference in your child’s life, ensuring they receive the support, understanding, and opportunities they deserve.
Why it’s important
The processes, systems, and structures of our world are not always built to support or accommodate individuals who are neurodivergent.
Although change is happening, we have a long way to go in two key areas:
- Education – most teachers have had little training on the adjustments and accommodations that can be put in place to help neurodivergent students succeed. Old-fashioned methods of punishments and rewards are often detrimental to neurodivergent students, who by the nature of their neurology are not able to meet certain expectations.
- Healthcare – not all clinicians and allied health professionals have the training and experience to address the needs of neurodivergent children. Further, high-quality care can be difficult to access, costly, and not always up to date in the latest research and how it intersects with lived experience.
You are your child’s best advocate, and that responsibility to become knowledgeable and proactive can feel overwhelming. There are three components to becoming an effective advocate:
- Search for knowledge – the adage, “knowledge is power” is a fundamental pillar of advocacy. Read widely and ask questions, you will find different information and alternative pathways in support groups, online, and in books.
- Focus on relationships – whether it is building rapport with teachers or connecting with specialists, relationships are incredibly powerful in influencing the change you want.
- Willingness to collaborate – working together with those who hold power over your child’s circumstances is always the most effective approach. There might be times when the individual you need to collaborate with is not a willing party; if this is the case, engage directly with their leader.
Tips & strategies
Educate yourself – begin by thoroughly understanding your child’s neurology and how it affects them as an individual. Learn about their unique strengths, challenges, and the support they need. Reliable sources such as books and professionals specialising in neurodevelopmental differences can provide assessments and valuable insights. You might find however that there is conflicting advice about therapy, parenting strategies, and medications. Do your research and don’t pursue anything that does not feel right for you or your family.
Build a support network – seek out advocacy groups, online communities like ADHD/Autism + Parents Support Group, and local organisations that cater to parents of neurodivergent children. Connecting with other parents who have faced similar challenges can be a source of comfort, guidance, and encouragement.
Collaborate with professionals – collaboration between parents and professionals is vital for a child’s success. Engage in open and regular communication with your child’s healthcare providers, therapists, and teachers. Share insights using the Keywell app about your observations of your child’s progress, challenges, and any changes in their wellbeing. Develop a strong partnership where you work together to create an individualised plan that meets your child’s needs.
Be respectful – it is hard to keep emotions in check when we know our child is struggling. Avoid taking conversations down the path of personal accusations and instead focus on the support your child needs and steps to get that in place. If you are concerned about a meeting and feel like you need additional support, go ahead and ask a partner, friend, or family member to attend with you.
Be prepared – before going into a meeting, write down all your questions, the key issues you want to address, and desired outcomes – be brief and specific. Each meeting is an opportunity for you to resolve your concerns, don’t leave without either another meeting, an acceptable resolution, a plan, or a contact person who can help you move forward.
Establish an Individual Education/Learning Plan (IEP/ILP) – for school-aged children, an IEP/ILP is a valuable tool for ensuring appropriate accommodations and support in the classroom. Start the process by emailing your child’s teacher, you can use this sample letter as a basis for your email. If your child has ADHD, download and give the Supporting Students with ADHD Booklet to your child’s educators. Familiarise yourself with the process at your school, attend meetings, and actively participate in discussions about your child’s educational goals. Advocate for necessary modifications, additional services, and accommodations that will optimise your child’s learning experience. A psychologist’s report will usually include recommendations that you can use to help you advocate. Some schools can provide WISC, WIAT, and other learning assessments to further inform a student’s education profile – ask if this is an option for your child.
Document everything – maintain a record of meetings, assessments, observations, and communications related to your child. Where possible, aim to summarise actions/agreements and distribute them to stakeholders via email so that you have proof of what was agreed with the relevant dates. Documenting important observations about your child using the Keywell app, can help you recall information accurately and provide evidence of their progress or setbacks. These records can also serve as a reference for future discussions and decision-making.
Know your rights – familiarise yourself with the laws and regulations that protect the rights of children who are neurodivergent. These may include your country or state’s version of the disabilities education act, government education department, and advocacy network websites. You can start with a few key sites:
- For Australia see Disability Acts for Education and Information products for students with disability and their parents and carers and Education Standards – Adjustments and Disability Standards for Education and Disability Law – Tools to get the support you need at school
- For America see Individuals with Disabilities Education Act and Center for Parent Information Resources and National Center for Learning Disabilities and Council for Exceptional Children and Special education law and advocacy for children with disabilities
- For United Kingdom see SEND: guide for parents and carers and Independent Provider of Special Education Advice (IPSEA) and Special Educational Needs and Scotland Children and young people – national neurodevelopmental specification: principles and standards of care
- For Canada see Understanding Education Rights in Canada and CanChild Parenting Matters! and Inclusive Education Canada
Understand your child’s entitlement to appropriate accommodations, therapies, and educational services, and be prepared to advocate for their rights when necessary.
Encourage self-advocacy – as your child grows older, empower them to become their own advocate. Teach them about their neurotype in an age-appropriate manner, and encourage them to express their needs and preferences. Foster their self-confidence and guide their self-advocacy skills, gradually promoting independence and self-determination.
Finally, it’s important to remember that at the centre of advocacy is negotiation, and there will be times when you won’t get the solution you want, but that doesn’t mean you can’t negotiate a comparable outcome.
