I’m strong like a warrior. I can fight like a warrior.
Allegedly, I’m shielded by a team of professionals around us who meet and collate information to make sure, as a family, our needs are met.
They also have the hard task to integrate our child into a mainstream setting and one of the biggest battles always reverts back to the educational handling of a condition few people know anything about.
And one of those unmanageable tasks is actually what happens outside of school and in particular with the use of social media – I guess it almost magnifies the lack of control we have as parents.
So, I did the school run yesterday, having woken up on a relatively good morning. Here was my first mistake: I was relaxed and behaving like a ‘normal’ mum.
I smiled and passed exchanges with parents en route.
Then I found out something that sent me into an unprecedented state of panic.
I didn’t have my armour on and my emotions were exposed just enough to send me over the edge.
A group of parents had used an online forum to exchange views and versions of behavioural incidents that had happened at school involving my child.
Not only did they debate what could be ‘wrong’ with her but assumed that maybe she had ADHD or was it Autism?
Or maybe it was just down to the parent that they had seen on the playground who had no control of the child?
So parents began to ask their children what had happened earlier in the day at school and then the name was dropped of the child that had done it.
Yes, my child.
In black and white for a whole class of parents to discuss in a secret forum.
Parents had been shocked and angered by the severity of the incident forms that had come home and needed to vent.
I understood that part – I had felt the same thing too. I had also broken down in tears about it only nobody knew about that.
I had called the school and discussed that these were written with such detail and without further support which would inevitably typecast us further into a bad family bracket. The headteacher said there was nothing she could do about it and I hung up the phone, overwhelmed and flooded with tears of rage.
We were actually vulnerable and suddenly my worst fears were playing out before me.
Prior to this, I had been desperately approaching parents on the playground in order to explain behavioural incidents further and that my daughter had additional needs.
I felt like a person campaigning to explain, to be understood, to not be judged. I just didn’t get to these parents in time.
If I didn’t care or was a bad parent then maybe it would have been easier because I could have just carried on.
But I couldn’t.
I would never condone violence or accept my child to hurt others.
In fact, that is why I never let her out of my sight. I am run ragged always watching to protect not only my daughter but others she comes into contact with.
I think I hit rock bottom yesterday and I got scared. I lost all control.
I felt so angered, saddened and frustrated that I lost it in the street.
I came home from the school and began screaming, crying, grunting then finally kicking the fence. I became feral as I began uttering sounds – it truly was the last straw to send me over the edge.
It felt completely out of my control what was being written about us and I felt so heartbroken and victimised.
My eyesight was hazy and I was unaware of onlookers.
My dad found me and put his arms around me, picked me up and ushered me to the car. He used calming tones to reassure me things would be ok.
I had lost the sense of reality and the fog of frustration had descended on me.
I have never experienced something like that before.
My poor father, who had been concerned lately of my fragile mind, had tears in his weary eyes as he uttered “your pen is your sword.”
He was right.
In that forum somebody had stepped up and put the gossip to a halt.
That parent referred the group to my blog and explained the condition to the best of her ability.
It shed some light on the situation.
These words on these pages paint a different story.
One of tragic sadness, one of desperation and one of what life is like with a hidden disability.
It may also highlight ‘that’ child who has been so fraught with anxiety in the past that she was unable to go to the toilet for days because her whole body shut down and she could not follow daily tasks.
A beautiful child who cannot control a condition she has and wishes she had a different brain.
And of a mum who cannot guarantee that her daughter will be able to live independently as she grows into adulthood.
If they had of asked me in the playground then I could have told them all about these things.
All of my sadness and grief of having a child who is not just like theirs but of a daughter who I am often very proud of for overcoming daily obstacles.
I want to shout from the houses that she can go to the toilet now – what an achievement!
My estimations have changed – I don’t mind if she can’t read like her peers, or do multiplications or recite the lines of a favourite poem.
I simply want her to be able to integrate into society.
I am truly sorry that my daughter attacks, it is her response system. It is not an excuse, but an explanation.
I am also embarrassed by my own performance in the street – my meltdown. I can guarantee that my daughter feels a range of emotions about her own behavioural responses.
And here I am, writing another blog. I am fractured, admittedly, but I’m not fully broken.
I will put my armour back on to fight another battle. And I will use the cathartic route of writing as my weapon.
I’m strong like a warrior. I can fight like a warrior. I will write like a warrior.
So sorry you’ve had to experience that. People can be cruel, especially when they don’t take the time to listen and understand. Writing is a great way of educating. Hope some of those who were so unkind now manage to offer you some support xx
Thank you for the support xx
Oh how horrible. You are such an amazing mum please don’t let anyone make you think otherwise. Sometimes I think we need to hit that low before we can get back up with that extra strength. I hope those mums will learn and think twice before rushing to conclusions in future. Thinking of you. Lots of love. Debx
Thank you Deb, onwards and upwards xx
Thank you Deb, it’s just as frustrating as you feel as nobody was listening for so long. Onwards and upwards xx
The playground can be the loneliest and most judgmental place on earth when you have a child who is unable to conform to all the ‘norms’. I felt such relief once I didn’t have to face it twice a day anymore. I hope some of your message reaches the right ears!
Such a lovely comment thank you so much 😊 x
I feel your pain! My poor child has just had 2 friends parents tell the school he needs to stay away from them. He is heartbroken and so am I!
Stay strong it’s such a hard journey for them and us
What an awful situation, your poor son needs understanding not further mis-treatment. I wish you all well and thank you for reading/commenting x
What a truly awful situation. Thanks for being brave enough to share it. There are of course many of us who quietly understand from our own experience and empathise! What an amazing Mum you are!
Thank you so much for the kind comment and for reading. I hope your own situation is ok too x
The biggest disability in our community is sadly ‘ignorance’. I blog to save my soul. Not for others to read it as such but for therapeutic release.
We have been ‘broken’ by comments and opinions or the blatant cold shoulders of other parents and worst of all for my son we as a family have been ousted from the school altogether.
I braved a brief encounter only a month or so ago with an acquaintance who had literally started crossing the street when she saw me. I waited until we did not have the children to enquire what it was that I had done to offend her. Blimey. Was I not ready for the response? I’m utter shock I flew into my first full scale panic attack. Unable to breathe she reached out to me uttering “oh I’d no idea it was so bad for you”… really… what do these people think happens when we are behind closed doors? If another person’s child has been scared by my son I’d want to help. To help educate the parents so that they might educate their children about disabilities but also so that I might help my son build bridges and allow their child to meet the other side of him. If parents choose to hurtfully discuss these things without coming direct to us, they simply further isolate a struggling family, create damaging inaccurate gossip and fuel fires that massively impact on children’s wellbeing. My son was excluded and we have been told they will not have him back. I have always believed that their justification for this needed challenging until this parent informed me that she and many other mums had approached the school requesting that my son be removed to protect their children. Guess I know now why he won’t be going back. Just wish they had a view on the devastation this has caused. But luckily for the ‘community’ out of sight out of mind and the problem has been moved on.
Please do not feel alone. There is a stronger warrior community of parents who can empathise, not judge and offer reassurance, support and encouragement. A mummabear meltdown is sometimes needed. It’s a release. And then you put that armour back on. I’m proud of you and grateful that you reminded me to find the armour once more. I’m going home to polish my armour now ♡
Thank you so much… I read your blog about crumbling and how bad did it have to go to get somebody to listen. I loved the one also about starting the day off with the wrong expectations – I could so relate to that one. I feel for your older sibling too. I’ve been meaning to message about the blogs but never got around to doing it! 🙉 please keep blogging they are great to read xx
I’ve just re-read this blog… And my comment… And somehow I’m confused about how I now feel about this. Can our mental health survive with just armour? Is this very armour a double edged sword; our defence and a barrier? I’ve been pondering the ‘support system’ both in terms of parenting a child with a disability and managing a mental health condition and it strikes me that those plodding on ladened with armour but nevertheless presenting as ‘coping’ are in actual fact doing themselves (and their child) a disservice. Nobody will ‘help’ those who are doing OK. Wrong as it may be, we may first have to break to access a higher level of intervention, proportionate to the needs of our families. To break we may have to attend meetings without the armour. We may have to risk being more vulnerable? In doing so, I’m predicting we might also feel as though things get worse before they get better but eventually there’s a chance we could become more accepting, comfortable and confident in being ‘just who we are’. Far healthier to be content with being good enough. What do u reckon? A day without carrying the armour, what would that bring to u?
You are so right and things have to hit this bottom to get some help. The blog got passed around in the background at the time and started to cause a stir. In TAF meetings I’ve pushed to tears for anyone to start to listen. My armour can’t always be on and at times I question my mental health. My dad confided to his mum and brother he had felt I was on the edge of a nervous breakdown. It’s so sad this is reality for so many SEN parents like ourselves xxxx thank you for re-reading xx
I’m not yet brave enough to connect my blog to my real world identity. If anything the blog is my armour, my mental health protection. I’m so scared about revealing myself for potential scrutiny. My #virtualvillage really is my life saver x
I can understand that and I go through waves, one minute I want to shout to the world and other times crawl away and hide. I feel like each time I post and each day that passes I’m becoming more resilient to the judging. I hope your armour can carry you through too. I hope one day we get to meet at a blogging event or a PDA conference, I feel there may be warmth from the start xxx
The school should help with this. As a Head in a school where we have some children with extremely complex behaviours, if we get a whiff of gossip about any of the children in this way we approach the parent of the child with needs, and ask if it is OK to share with relevant parents the difficulties they are facing. So far, all parents we have asked have readily agreed, and this has halted such parental unkindness virtually immediately. We are obviously very careful about what we share. Unfortunately some people can be extremely unkind about things they don’t understand and are very quick to judge. This approach over the last few years has really helped.
Sending you hugs x
I’m so so sorry you had to experience this! It’s awful when the jungle drums start beating. We experience playground looks and whispers and we have just been though something similar here at home. Its soul destroying! Our son made his first friend in our street. He is 4 years younger than him. This friendship last 4 days. The little boy would come to our house to play (watch Minecraft on youtube) then he asked if our son wanted to play at his house, we were anxious but let him go. He came back about 20 minutes later in a full panic attack. Screaming “im not a weirdo” over and over again. This child mother called him a weirdo, shouted at him and told him you are never to come here again and to stay away from her son. She Put him our the house and slammed the front door on his face. All he did was get over excited when he saw a Minecraft plush toy, he picked it up and like anything soft he rubbed it on his face!! So now we get dirty looks from the family, it’s now became street gossip and all but 2 of our neighbours are still talking to us. She has gone as far to take he child into the house when my boys are playing foot ball in our drive. Our next door neighboura are now doing to same!! And out little one is in bits.
It makes me so angry and hurt. I want to knock on every door and set them straight about what it like for him but I know I would be as well talking to a brick wall!
Oh my what a horrendous experience, is warrior parents get met with so much ignorance and damage that we have to repair. Your son sounds very lucky to have you in his corner… I’m going to search your blog xx
It’s just pure ignorance! Our little one is so hurt and as parents we always hurt for them. I’m so bloody angry that he had to experience this, he is a logical thinker way beyond his years but he IS not good socially, this has really put him in a spin, he really likes adults, way more then children and he can’t work out why an adult would say those things to him, he thought it was just children who would do that. It’s a life lesson he really didn’t need at 9 years old 😔