Allergy Bullying led to Home Education

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June 18, 2017
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Allergy Bullying led to Home Education

Anonymous

What I love about home education is that there is room for each and every one of us, in all our glorious uniqueness. We have the freedom to work out what is the best educational fit for each individual and family, rather than trying to contort that individuality to fit into a normative system where one size is supposed to fit all.

We each have our own reasons and story about why we have chosen this unconventional path. Some have chosen it for positive reasons as an obvious and best choice for them and their family, and others have come to it as a last resort. My son and I have come to it from both points of view, and while we prefer to focus on the positives because we refuse to be victims, the fact remains that Tim was severely victimized during his seven years in the school system.

It is incredibly hard for me to write this, to drag up the fear and anger, the hopelessness and despair that I experienced as a mother, the ways in which I was bullied by other parents as I tried to advocate for my child, so I can only imagine and weep over what it was like for Tim to actually experience these things. As a brief background, he has ‘extremely severe allergic disease’ including multiple episodes of anaphylaxis when exposed to mere traces of peanuts, eggs, dairy and horse dander. He has a long list of other allergies, many of them severe, along with severe asthma, high-functioning autism and, as of this week, officially diagnosed learning difficulties that were never picked up on in school despite my repeated questioning.

While things were never good, for brevity’s sake I need to skip over the early years and my opinion on where the other children learned their negative attitudes towards Tim and his allergies. There were some very nice parents, who were supportive, kind and inclusive, but mostly they left the school because of the increasingly toxic social environment.

In grade three, Tim contracted a really bad case of whooping cough. We had to take him to hospital for breathing support, and I ended up removing him from school and doing Distance Ed for a whole term while he was at his worst. It actually took an ambulance trip to hospital many months later for the experts there to realize he had been living with chronic pneumonia and severe asthma.

So, when I did try to send him back to school, Tim was still weak, unwell, and had difficulty breathing. The teachers knew, and promised to keep an eye on him. There were two boys who ‘played’ with him in free play times, and they developed a new game where one, who was twice the size and weight of him, held him in a headlock and the other threw dust in his face to make him choke, then they let go and laughed at him.

When I contacted the school, I was told that Tim was part of the dynamic, and needed to stand up for himself, not ‘play along’. (Seriously? Like an autistic kid is going to have the social skills to deal with this without serious support?!) Other kids also laughed at him when he was coughing and wheezing, and some of them threatened to drag him down to the chook shed and crack eggs on him. This was the point at which he told me one night that he wanted to kill himself, just to get it over with. Heartbreakingly, he wanted to kill me too, so I could be with him in heaven, as I was the only good thing in his life and he didn’t want to leave me behind.

We needed help before this went from despair to action, so I informed the school he was only going to attend part time so he wasn’t exposed to the ‘playtime’ over lunch, and got in touch with a highly recommended child psychologist. Tim was such a mess that for the first six months he hid under a chair and hissed at her while we tried to sort things out.

Through the following year we worked with her and the school, trying to build his resilience and social skills. Meanwhile, children were putting pictures of eggs, dairy and nuts in his face, and threatening to smear them on him, or put them in his food. The teacher kept talking to them about the need to care for each other, but parents were still on the warpath about food restrictions and things kept getting worse.

For a brief, golden moment at the start of grade five there were three new children who liked him and formed a group with him, and for the first time he had kind friends who stood up for him against the majority. However, they were also just children, and one now says they were told that for as long as they defended Tim, they would be treated the same as he was, so one by one, they crumbled, and two of the three were so unhappy they left the school.

This was when the bullying started to get really bad. One afternoon I watched a concerning incident from the car park as some boys crossed the oval. Two of them were trying to snatch the bag from a boy who had a carton of eggs in there, and were chasing Tim so they could smash them on him. Luckily I saw and intervened, and went straight to the teacher. She spoke to the parents, and they apologized to me, and spoke to their children, who said also sorry – but didn’t change their behavior.

Another incident that still makes me weep was when a teacher decided to reward the class with games, one of which was to get the children to wear a blindfold and use a knife and fork to cut a block of chocolate. Tim didn’t want to participate, but she had a strict rule that anyone who refused her activities was given detention, and he is one of the rule-following Aspies who had never received detention for personal misbehavior. Even so, he gathered all his courage and said he didn’t want to because of his allergies, and she dismissed him and said as long as he didn’t eat it, he would be fine, and he knew the rule….? So he did as she asked, but was so incredibly distressed that night that he started bashing his head against the door and windows of the car when I picked him up, and couldn’t actually tell me what had happened for a few weeks.

My final straw however, the catalyst that made me realize that we just could not stay and persist in school any longer, occurred at the start of term four. Now, my biggest advocates had been his teacher and the first aid officer, who had arranged for all of Tim’s teachers to have annual training in first aid, the epipen, and his very specific allergy management plan. He organized a morning of training, and finally got two teachers who had previously always been ‘too busy’.

Two days later, one of these teachers had organized an afternoon tea for the parents where the children had to use their second language skills to serve tea and cake. She and I had conferred about what was and wasn’t safe, and how to manage things and include my child. However, at the last minute, that second recently-trained teacher came with some fresh cow’s milk, and they decided it would be nicer for everyone to use it. They spoke to my son, and told him if he just stayed away from it he would be fine. This was already underway by the time I realized what was happening.

So we had parents and children who have been in the same class as my son for seven years (it was a small regional school), happily drinking their dairy-laced drinks, some without thought but some, I have to believe, with a degree of malicious enjoyment. A pair of girls took their feast to my son’s desk which, according to the management plan, had been placed separately to prevent it being contaminated, then spilled their milky tea on it! He freaked out, and I cleaned it for him, but at that point we’d had enough and we walked out after explaining why to the main teacher who was very apologetic.

That night, co-incidentally, was our parent-teacher night, so I went along with my ex-husband, who was furious when I told him what had happened. I was upset, as I don’t do anger very well. When we brought it up, the responses were mind-boggling. Not one parent went, “Oops, sorry, I just didn’t think!” Some just rolled their eyes, or picked their nails. When we brought up that kids were still threatening him with his allergens, I was told, “They all tease each other, you’re just taking it too personally!” When I replied that if my child ingested any of his allergens it could actually kill him, another mother (who was also a teacher at the school) said she knew it was selfish but she didn’t want her child’s innocence tarnished by anxiety over my son’s anaphylaxis, and given that nothing had actually happened, I really was just over-reacting.

So home I went, so shocked and upset I was almost numb, to put my child to bed. He told me he didn’t want to go back to school the next day because one of the children had, that same day, threatened that he “could take him out – all he had to do was hold him down and force him to eat the chocolate he was carrying in his bag.” This was another ASD kid, and I did speak to his mum who was horrified and talked to him about it. Her boy didn’t really understand, and said he was just being like all the other kids in the class.

There are just some days in life when things are so intense they create a natural divide in your life. This was such a day for us, the day I realized and accepted that my child could no longer continue at school. It wasn’t just the risk he faced every day that was insupportable, but the constant omnipresent fear and the way that was shaping him. No child should be scared for their life every day they attend school. I acknowledge that my child’s circumstances are extreme, and also recognize that his school did the best they could, but this is why we NEED the option of home school, and why we need to be able to withdraw our children without waiting for 28 days, or getting permission from the school. My son’s school never gave up on trying to get us to stay, and remain convinced that because he never experienced anaphylaxis at school they were meeting their duty of care.

On another note, I just want to mention my son’s actual academic education, which is the overt and stated reason he and other children are sent to school. When he was younger, part of his ASD assessment included psych profiling that, now I re-read it with more understanding, indicated that he was likely to be twice-exceptional, with areas of great strength (99th percentile) as well as areas of great weakness (16-25th percentiles). At school, my rule-following Aspie tried his little heart out, and managed to be about average in a class that he describes as trying harder to annoy the teachers than to actually learn anything. He’s bright, and was seen as ok because he was achieving around the lower average result, when he could have done so much more!

When we started home education, I had spent a summer using my professional teaching skills to design a wonderful curriculum that was appropriate to his grade level. It became obvious almost immediately, however, that he was incredibly patchy. There are areas where he needed a great deal of remedial attention, and others where he was succeeding at a close to VCE level. I gave it a year to see if these would resolve in a less stressful environment, but they didn’t, so we’re currently going through yet another assessment process that has already identified that he has dysgraphia, dyscalculia and dyslexia.

This brings us to the proposed changes to regulations and the new requirements for reviews. My child has a highly complex and unique set of needs including medically, socially, and educationally. These require a complex and unique curriculum that cannot easily tally with AusVels. I am hopeful that because I have official diagnoses I will be able to negotiate a solution with the VRQA in terms of what I teach, but I am deeply concerned for other home educating parents who have either chosen not to or, as is the case for so many, been unable to afford to pay for these extremely expensive assessments. We need protection. We were not protected in the school system, so we had to leave, and now we’re starting to feel threatened in this safe area that we have so recently discovered. Please consider how important it is to respect and allow for different ways of educating children with significant differences in a way that is responsive to their individual needs.

 

 

2 Comments

  1. Concerned Supporter says:

    This is sickening and heartbreaking 🙁 Sadly, it’s not an uncommon story. The new regulations will be very dangerous for these kids, among others. It beggars belief that people do not see this, and think the regulations are purely about accountability. The regulations do NOTHING to improve education outcomes, but everything to harm vulnerable kids.

  2. Sarah Nicholson says:

    I am so sorry for what happened to you and your son, but I am so glad you wrote this story. My son doesn’t have anaphylaxis or an ASD diagnosis yet we encountered the same flippant and heartless attitudes to his allergies and his needs in a school which promised it would take care of him. It is appalling. Thank you for writing this. I used to wonder if I was being overprotective but now I know I’m not. I’m being an advocate for my son aka a mum.

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