Welcome to Jon’s Mum who has written a Guest Blog 🙂
I looked up at the kitchen clock, it was almost that time again. It was the same every weekday at 3pm and I’d have that awful lurch in my stomach. Not that I was wasn’t looking forward to picking Jon up from school, but it was the five minutes before in the playground that I dreaded. It just petrified me. That sounds ridiculous doesn’t it? But these feelings I endured for around two years because of my son’s unsupported disability.
These feelings I used to protect myself bear the scars today, as I will explain later.
One day I went out and bought a new coat. My only requirement was a big hood. It didn’t matter what the weather was but school pick up meant I had to have the hood up. It protected me from the ‘rays’.
I would often feel the rays burning into me from different parts of the playground. These rays you see, were directed at me from the eyes of parents. I would stand in a ‘safe’ part of the playground away from the other Mum’s, avoiding the cliques.
I recall the day it began – when I say ‘it’ began, I mean the fear and the avoidance of other parents. Jon had been diagnosed with Autism about a week before. He was in our local mainstream primary school and there had been frequent incidents.
On this particular day, I was waiting for Jon to be brought out with his class. I was aware of an incident that had happened in the toilets the previous day. It had happened once before.
I was literally confronted by the mother in front of other parents. It was humiliating. It went something like this:
‘’I thought Jon was friends with Amy so why would he do such a thing?’
A reasonable question to say he’d wee’d on her (I’d be a little upset too).
‘’I’m really sorry, I really am. He does like Amy. When I spoke with him about it, he told me he wanted to make her laugh. He has just been diagnosed with Autism and he gets things wrong when he is trying to play’.
This was the first time I’d told anyone about Jon’s autism. I felt really bad like I was using it as an excuse. It didn’t feel right but parents deserved a reason and Jon was vulnerable, not that this Mum was bothered. I was shunned and suspected she told other parents. Things like that make up the playground gossip.
Most of the incidents naturally arose at playtimes. Each day as the children were reunited with their parents and skipped off towards the school gate, I was met with by the teacher saying, “Mrs Smith, could we have a word?” I knew it was coming, but worst of all, so did the other parents.
As Jon went through primary, nothing changed. Jon didn’t change but as his peers matured, he stood out more. He liked other children but didn’t know how to interact with them. He’d run around the playground like an excited puppy, skittling children that got in his way. He would throw things impulsively and playing tig meant pushing to the floor.
The Head Teacher at the time called us into her office one day. She started by saying, “In all my career, I have never said this to a parent before, but have you considered Ritalin for Jon?” He was five or six years old and it was also the first time I’d heard the phrase ‘Whirling Dervish’.
It wasn’t until Jon had left that school that he also got a diagnosis of ADHD (amongst other things including sensory processing and modulation disorder). It explained a lot!
I look back now and see a small child with complex needs and no provision or intervention to support him. He was illegally excluded eight times before the new Head started recording them. It makes me incredibly sad.
School applied twice for high needs funding, and despite exclusions, it was turned down both times. School weren’t supported by the Local Authority, so neither could Jon be.
I’m not sure whether parents were talking about us. I may have developed some kind of paranoia, I just expected they were and assumed awkward glances were directed at me.
The mother I first spoke about went on to threaten me with physical harm. We crossed paths in the school stairwell, she was extremely unpleasant and caught me unaware. It went something like this – If my son ever touched her daughter again, she would hit me. She pointed her finger right into my face. I could see her anger and it really frightened me. I didn’t respond except for saying I didn’t know what she was talking about. I really didn’t. School hadn’t told me anything.
I heard the Head Teacher’s voice. He was just coming up the stairs and had heard everything! He asked her to his office but she marched off. He reassured me he would deal with it. He did. She was phoned and warned that if any threatening behaviour was used in school again that it would become a police matter and she would not be allowed on school premises.
Another time was just incredibly sad. I had picked Jon up and as we were leaving school a little girl was saying, “Mummy, Mummy, look! There’s that naughty boy!” She had her arm extended and was pointing to Jon. There was no mistaking it. That wasn’t the worst part. Her mother exclaimed, “Oh yes he is!” Reinforcing the little girls belief. I cried our way home with my whirling dervish racing ahead towards our house, blissfully unaware.
The confrontation, the number of incidents and my paranoia that everyone hated me and my boy caused me to deliberately isolate myself from other parents. I was frightened that if I became friendly with other parents, it would be terribly awkward if Jon did something that put us in a difficult position. So, the solution was quite simple really. It really didn’t hurt quite as bad that Jon wasn’t invited on play dates and parties if I wasn’t in the clique. It was a good way of protecting myself.
It was terribly isolating. With the relentless exclusions, I found myself crying down the phone to my Mum who never judged and would listen. My husband was usually at work so was protected from my daily nightmare. It was Mum I turned to. Even then, my sister asked me to stop ringing Mum as she’d had Mum crying on the phone. My burden had passed on to her without me realising, I felt very guilty for that. I soon realised that this was going to be something I just get on with on my own. Eventually I just became numb with it all. I learned to switch off emotionally. It helped.
I’m pretty sure, like PTSD, my avoidance has become deep rooted. I’m afraid of new friendships but that must sound odd to those that know me because I could talk the backside off a horse! But it’s all very superficial, I also don’t have a big network of friends any more. Not ones that invite me out for a drink or call for a chat. I blame myself for distancing myself. The old friends died off because I sounded like a broken record, constantly justifying behaviour and trying to figure out why Jon did the things he did. It became boring. Everyone else seemed to be getting on with life, going away for the weekend, going to concerts, having babysitters etc. I couldn’t do those things. I had nothing to talk about. My life as a SEN mum was all consuming. It was just about surviving.
Ten years on and thousands of pounds later. My almost 14 year old is in an independent specialist school for academically able children with social communication difficulties. It is an hour from home and an arrangement that works is that he is a part time residential boarder there. He was awarded full week boarding but we wanted him at home with us, this arrangement gives Jon respite from the travelling and transitions between home and school.
He has had three maintained failed school placements before being awarded an appropriate placement with provision package for his complex profile. Because he was ten years old before getting any Speech and Language therapy, some opt out behaviours have become hard wired. The damage has been done and it is going to take years to undo it. The Local Authority are under resourced meaning the criteria for services like OT and SLT are incredibly narrow. Jon never met them. Yet on assessment, the evidence is that Jon has huge discrepancies in his profile. He scores on each end of the centiles meaning his gaps are huge and very disabling. The judge couldn’t believe that the Local authority had ignored his obvious needs. Of course, there is no accountability.
A clinical Psychologist met Jon and assessed him. He said that without the independent specialist school and provision they had, Jon would not become an independent adult.
Jon has friends now for the first time, I mean real friends and a sense of belonging. He is developing into a lovely young man. He can’t tolerate swearing at all, he wouldn’t dream of damaging property and he is has a great sense of humour. He is completely obsessed with Doctor Who and likes animated films that are aimed at younger children. I can’t tell you how much he has grown into such a lovely person. We are so proud of him.
A little bit of me is smug because the daughter of the parent who shunned and threatened me was at a party (a few years after primary) at someone’s house. Jon was invited as I had stayed in touch with this parent. The girl’s behaviour was dreadful, she was throwing food onto the carpet during a film. S he heckled through the film and had no manners when she was given food. Jon however, watched the film, ate his food and didn’t join in with food throwing. His manners were impeccable and he didn’t need reminding. I feel a little bad about my smugness but I deserve it don’t I?!!
I’ve managed to avoid most parents with both my children being on SEN transport for the last few years. My youngest has now made so much progress that we’re willing to try the local maintained secondary school and he has just started scouts so that he can hopefully make some links with children that will be at his new school.
I have to drop off and pick up but still I feel that same fear. I still go at the last minute to avoid standing with parents, just in case they have an issue with my son’s behaviour. I know it’s silly but I still feel I have to protect myself….ten years later. Now, where’s that coat with the large hood?!
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