This post is a risky one. I think I'm at risk of offending many parents. But I feel this is an important message that needs sharing. It's my message and my opinion. The term Autism Warrior, or Autism Warrior mum...Autism Mama Bear..all these terms that we have given ourselves over the years. I understand why. We have to fight. We have to fight from every possible angle for our children. We fight against schools; schools who dismiss our concerns, schools who dismiss our interventions and strategies and schools that dismiss our children. We fight against professionals, professionals who let us down, professionals that cannot be found for months on end and professionals that promise support that doesn't come into fruitition. We fight against judgement. Judgement from strangers, from friends and even family. So I get the reason for the term warrior. And I think we should be proud of what we achieve on a daily basis. These are things that parents of NT children would never dream of having to fight and the fact that we have the ability to do this day after day is something to be proud of. Our resilience as SEN parents is amazing and should be recognised.
However - the term warrior. It also gives this perception of someone who is strong. Capable. Up for the fight. Someone who doesn't break nor falter, who believes in themselves at every turn.
And that, in my opinion, is where this term is wrong for SEN parents. It gives the wrong message. That we HAVE to be strong. We HAVE to know the answers. We have to believe in ourselves. It doesn't allow us to be vulnerable, to be helped, to be supported. It gives the impression that we shouldn't be low or struggle or not believe in ourselves.
I work, day in , day out with parents and I have spread this message before. Parents who are so focused on their children that their own physical, emotional and mental health is being pushed to the background , most of the time without parents even realising. I have spoke about the importance of time for yourself, time to be YOU and the fact that if you are not well, your child won't be.
But, what I haven't mentioned, is its OK to NOT be OK. This fight is hard. Its exhausting. And most of the time, you don't know how to help. You can't help. You don't have the skills, the knowledge and you don't know where to turn. Your managing this on little sleep, and no thanks or appreciation.
I recently conducted research on co morbid mental health and ASD / ADHD and guess what mental health condition came out of that research? Or rather whose mental health came out top? You guessed it - YOURS. The parent. Parent's of SEN children in Hertfordshire are suffering. Their mental health is suffering. There is grief, trauma, PTSD, depression and anxiety. Because this shit is HARD. And that - that is the truth about SEN parenting. I appreciate that this may not be the experience of every SEN parent in Hertfordshire but from my research this is the message. And yes, you are warriors for your children. You get up day after day and you fight for what your child deserves. But internally, the fight is detrimental. And that's OK. You don't have to be strong all the time. You have the right to be vulnerable, to be lost and to be traumatised. And so do I.
I don't have it all together. Which, in my work, is quite difficult to admit to my clients and prospective clients. I don't have all the answers for Noah. Just once I would like to go to an appointment and not hear bad news. I survive on little sleep and far too much sugar, and sometimes, very little fight left to battle the next meltdown or sleep terror.
So I don't like the term autism warrior - because I don't want SEN parent's to think they have to be strong. I want the message to be different. I want the SEN world to know that its OK to not be OK. And that's my message for the SEN community. Be strong for your kids, you know whats best for them and you fight for that all day long. Be proud of your resilience and your achievements. But don't feel like a failure , or a bad parent for finding this all too much some days. Don't feel like you have to always be strong. Don't beat yourself up for not having your shit together. Because that's the reality of SEN parenting. And its about time that that message is screamed from the roof tops.