What is advocacy? Taking action to create a change.
- This could be a change in attitude – the hardest thing, which often happens through first hand experiences!
- A change in a system – an amendment to a policy or protocol.
- A change for your child’s access to something for a specific time – education, swimming class, Beavers, a flight… whatever!
Where and with who?
- Schools – it is very common for SEND students not to have all their needs met because of a range of circumstances, such as:
- differences in quality of teaching varies from teacher to teacher and SENDco to SENDco.
- Lack of an EHC Plan; you may even face barriers in referring or evidencing for one.
- Lack of school resources and capacity for required provision; there may be unhelpful comparisons of where needs lie within a classroom or school. Every child deserves the learning environment in which to meet their potential.
- Organisations or companies – such as, travel companies, events companies, restaurants, social clubs, local authorities’ sports centres etc.
- The age-old SEN parent hack of 360organisation!
- Be prepared, call in advance take a contact name, follow-up with an email, take a screenshot or print out so you have evidence of raising a need beforehand. Be clear and specific on needs and required adjustments; talk to the right person.
- Wear a lanyard and when travelling abroad, I carry a medical summary of G’s needs from his pediatrician, it can help in some situations such as queuing and gaining access to quiet spaces.
- The age-old SEN parent hack of 360organisation!
- Friends and family – hopefully you won’t need to do this, or if so that it will only involve low stakes reminders and subtle adjustments.
- Your family love you and will love your child, they care for you, so where small misunderstandings creep in address them swiftly so they don’t deepen.
- “We didn’t need to do this for you” is a classic loaded comment/moan, address it with kindness but directly. Society generally has a much healthier approach to child development today and there is a wealth of advice out there not just from your own childhood experiences.
- To be honest I find comments such as “they’re all like that aren’t they at his age” and “he’ll grow out of it” more unhelpful. Perhaps because in the past, I actually thought they may be right. But no. No he won’t grow out of it. He is autistic, he is very different, which is fine, but please don’t gaslight his need in the moment. This is a thing, and we are living it, he won’t just “magically grow out of it” in a few years.
- Society – I try to pay less attention to the random and unhelpful comments, they are exhausting to take on board and for what, often these ‘well meaning’ members of the public have entrenched generational views that are not for moving:
- “What’s wrong with him then?” “Why is he doing that?” “You should stop him doing that” etc etc. I deal with them differently as and how my capacity of the day allows, sometimes I select planned ignoring, sometimes I seek to educate and explain on the go. If I get a sniff that an attitude is for turning, I am like a red rag to a bull trying to share the impact inclusive understanding can have on every neurodivergent and autistic person.
So, there will be much advocating in different ways. Always try and make the change if you have the energy in the moment. But for now, I’m going to focus on schools because that’s where shockingly it can be challenging to have a voice, and where advocating that can make a huge difference, not only to your child, but others too.
How to advocate effectively?
- Speak to experts, experts can be SENDIASS, Local Authority Support Officers, Autism advocates, GPs, teachers (that are trained/ understand):
- Have a clear purpose and know what you want the outcome to be.Listen to the experts, take all guidance on board, and then decide which is the most useful and sound it out with a partner or a friend, or family member.
- It is ok to disregard some experts take, use the advice from experts you trust.
- Know your facts:
- Collate the evidence and present it clearly:
- Keep emails in specific folders so they are accessible in your inbox.
- Keep all paperwork from practitioners that are useful, such as play and speech therapists, autism nurses, class teachers and Learning Support Assistants.
- Highlight key points across all the evidence – group into points by colour.
- Then write out your points separately in bullet points you can tick off throughout a meeting.
- Collate the evidence and present it clearly:
- Use your support network:
- These are people that you can sound out your argument, intentions, methodology and aims with. Ask what they think and listen. If they play devils advocate that is good, you can see both sides and think about the alternatives.
- Practice saying what you will say – in the early days I couldn’t communicate without crying, in frustration, because of the disbelief and sense of injustice. Practising ‘my piece’ got tears out of the way and gave me confidence I could speak it to authority.
- Communicate effectively:
- Write to the decision maker.
- Keep emails concise.
- Suggest a follow up action, such as a meeting, of so ensure you give a date and time.
- Provide a time scale in which you expect a response.
- Provide a broad view of your challenge, or point of advocacy so that the meeting is focused, if you feel the need to provide an agenda keep it to 3 points.
- In meetings take notes, send a follow up email and write down what your key takeaway was. Leave all communication on a positive note.
- Create a verbal picture of your child’s needs, write it down and practice saying it. For example, our struggle is that G presents as a successful communicator for his age because of his excessive range of technical vocabulary and his ability to recall precise information on certain areas. Some adults are impressed with his knowledge and articulation and don’t understand his communication barriers.
- Explain what they are missing clearly: for example, I would suggest to listen to him and highlight 1) there is never a ‘two way’ conversation; 2) he struggles to build and establish relationships with peers; 3) he has a one-track mind which means any topic out of his interests presents a challenge; 4) he struggles with everyday concepts such as money and 5) he can’t see the grey areas in social communication such as rules.
- With our input the SENDco developed 5 ‘dos and don’ts’ for how to communicate with G and it has certainly had an impact with support staff who may not be as well versed on supporting autistic children. We also share this with other people outside of the school.
Whenever you lay out the challenges your child faces in any circumstance you will feel guilty about presenting them in a negative light. Don’t. It is your job to explain the internal struggles that lead to their anxiety, and you must lay it out clearly so there is no escaping from a problem that could be avoided with their support. Turn the problem into a solution, suggest what they (e.g. school/ teacher/ LSA) can do to help and focus on the keeping these under review so you track success. One thing we have noticed is that small successes go unnoticed and therefore some strategies fall by the by, rather than saying, there hasn’t been a meltdown for a while because of these strategies, they are working, so you must keep them going.
Continue to advocate for your child and do it in a way that will create a change for them and for others. Share your experience, do not hide behind the fact your child once they are ‘are sorted’ – I know so much this will never be the case, but you know what I mean they have additional support or access to resources. If something works highlight it to the school, give positive feedback too. This feedback is so precious and helps them support others and to know what is working. For every child that ‘is sorted’ there is also a parent nearby pulling their hair out wondering how to start the process of advocating for their child that is struggling in school. I have been there; I know so many people that have been there. Organisations, systems, and professionals are certainly intimidating. Keep true to your gut instincts and write down your journey, this will help you identify the small wins, which you can then celebrate and share.
Finally, give gratitude to the wonderful people that help you to be the advocate that your child needs you to be; you will find them in the most unexpected places, and together we can contribute to a more inclusive and tolerant society.
