Published on 12, July, 2020
I sit here after a night of no sleep worrying about my son and how we will ever move forward with school.
My son is a bright, determined, unique thinking young man who has autism and finds the world very stressful. This leads to what I am sure you are all familair with. A fight or flight response to minor difficulties. Shouting, swearing, threatening to harm himself, running off, occasional pushing and shoving. But these behaviours do not define him. These behaviours are a symptom of his unmet needs. Of a world that refuses to recognise these needs and respond differently.
There are times when he is almost settled in school, or so they think. He manages to comply. Manages to hold it all in. We see when he gets home that it is not so simple. I am sure that is a story you are all familair with. We have moments in school. Of course there are times when it all gets too much. When he shouts or refuses to do what he is asked. When he is 'rude'. The school's response 'a red card'. he must learn these behaviours are unacceptable. of course he must but what are you putting in place to help him regulate? What are you doing to make the world less chaotic and confusing? To reduce his anxiety?
We had a meeting weeks ago. The school wanted to refer him to CAMHS (Child and Adolescent Mental Health Services). He was threatening to harm himself. These instances typically occured when school repsonded to emotional distress withs sanctions and escalation rather than de-escalation. CAMHS turned it down. School had not done enough. School agreed to lots. I beleived them. I did not want to be a difficult parent going and checking.
So it is the week before Christmas. A tricky time indeed. Out goes the routine. Excitement and uncertainty is high. Anyone with an ounce of training in Autism would know this week is likely to be difficult. Monday. Red card for swearing (had been rude to a staff member and the staff member used sanctions rather than deescalation which led to escalation. Tuesday. Red Card. Swearing at a peer and an adult. At this point I could not hold it in any longer. I asked what had been implemented since our meeting 8 weeks ago. The Headteacher was going to check. I asked about the NAS resources I had sent on deescalation. I asked about the check ins with the Mental Health Champion and about Circle of Freinds, about the emotional regulation input that had been agreed. The Headteacher was going to find out. Why did she not know? Why was this not being considered at the first red card? The only thing she could tell me that had been done was the teacher explaining to the class each day how the day would run. This is a boy they wanted to refer to CAMHS and this is their reasoable adjustment? This is their additional to and different from?!
I expressed concerns about the church service the next day. I asked if some support could be redirected. It was agreed that an adult would walk close to Phoenix. They did not agree anything else. I saw him walking to chruch. No adult nearby. I saw him in the Church, pulling on his neck and hair, speaking his part inaudibly. He was stressed. I could see it. i wished I had taken hm home right then. But he had another service and would not have wanted to go. he wants to fit in, to be liked.
Wednesday pm Exclusion. My son had allegedly 'launched a child into the road', 'endangered his life'. These were in fact the words used when they explained to the other parent. Told the other parent that if a car had been coming they would be ringing to report her son dead. What an emotive thing to say? And based on what? I am waiting to find out? I think it is based on the account of the adult who did walk behind him on the way back. But apparently she leapt and grabbed the other child, so that he did not go in the road, so that does not make sense. Then my son was compliant to be led away by an adult apparently? He would have run for his life in fear. My son told me he grabbed the boy after a disagreement about the xbox where the boy said the only reason my son was good at games was behavuse he was fat and had no life and just sat playing games all day. Apparently the adult did not hear this, even though they were close by. But they will not admit this. they will say my son is a liar. That this did not happen. That the adult's words in a heiightened and stressful situation are most accuate. An adult who my son has been rude to in the past and has made sure action has been taken. Her perception is fact and not opinion in the eyes of the school. My son's voice is irrelevant.
What of the fact that they had failed to address his needs? What of the fact that he is vulnearble and has low self esteem and this exclusion could lead to a spiral of negativity towards school? What of the impact of the emotive language used by school upon people's perception of my son in the lcoal community, with his peers?
At no point do I think my son's behaviour was acceptable. i do not but I am angry at his demonisation by the school. At the sobotage of hope and opportunity. At their inability to acknowldege their failings but instead to cover their backs.
Let's blame a vulnearble child entirely, let's not look at what we did not do.
To them I am just an unreasonable parent, always defending her child.
How can we recover from this?
I have found information/ammunition is a great thing to have when dealing with these sort of issues. To start, before simply looking at the behaviour have they looked at the antecedent (the trigger), what caused the behaviour. Shame on the school for not handling this properly and reacting to the behaviour without examining the trigger, which is just as important. This helps with strategy to be put in place to prevent these behaviours. It is shocking that this sort of reaction by professionals is still happening and they love to push the phrase ‘we are inclusive’ but when coming to being actually inclusive they fail.
Funny a friend of mine suggested martial arts but I thought my child would not be able to cope as this is a large group session. But reading your post I am now thinking maybe I should try. We have been kicked out of cubs so I was worried but I will try again.
Thanks.He is year 6 so don't really want to move him. But I agree some schools are definitely better than others.
Thanks for your kind words. I have complained to the governor's but I know they are likely to collude with the school.
Did it work out well for your son? My son had his reintegration meeting yesterday. He was so anxious and the school wanted to just wash it all away. I felt a strong urge to take him out of there.
AngelDust said:Handi-andis stated that “you can lead someone on the spectrum to the neurotypical world but you can not make them accept it or join it”. But I think it is equally apt (if not more so) that you can show a NeuroTypical person the world of NDness, but sadly you can’t always make them see it (or want to see/understand it.)
very true
i think you are very correct the saying works equally well the other way around too. As there are two bell curves with only a small overlapping area, so both make perfect sense. The question becomes whether it’s possible to increase the area of overlap or not and if so how? As that’s surely what things come down to for all of us, a greater understanding of the other planet.
Well as the spectrum is a curve then you may well be on it, particularly given the prevalence of autism running in families. So what have you got to loose by running the AQ-50? In fact, might be worth getting the head teacher and teacher to go through it too in order to show them that everyone is on the spectrum to some degree or other. Just a thought and I’m sirry martial arts didn’t work out as I’ve seen some very good results with it.
Hi,It sounds very similar to an Independent Schools Admissions Appeal I heard last year, where the current school just didn't carry out anything they'd promised to put in place for a high functioning child who was awaiting ASD diagnosis (but currently didn't have an EHCP), but just kept sanctioning. The school being appealed for seemed to have far better at dealing with ASD children. I let the parent spend an hour making their side of the appeal, more or less without interruption. I strongly suspected that the parent also had undiagnosed ASD, but it was not correct for me to suggest it, nor would it have been correct for me to suggest that 'It's possible that your child might even, once they grow up, become chair of an Appeals Panel".I guess what I'm trying to say is: Are there any other schools in the area that you could transfer your son to that may be better suited to dealing with a child with ASD? Although all schools should be able to make appropriate provisions, some are just so much better than others.
Hi NAS24582,
I really feel for you. It is extraordinarily painful and utterly frustrating to watch your child suffer in school, understanding where they are coming from, knowing what could really help them, knowing they need extra support not punishment, receiving endless ‘wonderful promises’ from staff who can talk the talk during meetings…
For nothing positive to then actually happen, no positive approaches actually taking place, no actual positive or tangible differentiation or adjustment actually happening in ‘real life,’ and for the child to then be repeatedly punished/sanctioned/blamed/excluded instead, regardless.
Words are meaningless if nothing positive/different is actually taking place for the child in the real world, in their day to day lived experience.
It’s enough to make you feel unhinged, as if you have parted company with sanity at times.
I have been where you are in the past and I just wanted to offer a big hug.
My only ‘advice’ to offer would be to keep a full journal of these events, people, meetings etc. in case you decide to take this further, such as through the schools complaints procedure, writing to the Governors, or approaching your Local Authority Disability Advisor with a view to exploring whether the school is acting unlawfully/discriminating.
I pulled my youngest ND son out of high school when he was in Year 9 in favour of electing to Home-Educate, for a plethora of different reasons; some of which was because we had grown bone weary of meaningless words, needless barriers, and not being heard or understood.
Although it is true that there are some truly inspiring and deeply caring teachers (individuals and professionals) out there, it is folly, in my opinion, to believe that schools are anything other than a machine of sorts, based entirely upon an NT worldview/needs/normalcy, and within which 'different shaped cogs' can (still) too easily get mangled.
Handi-andis stated that “you can lead someone on the spectrum to the neurotypical world but you can not make them accept it or join it”. But I think it is equally apt (if not more so) that you can show a NeuroTypical person the world of NDness, but sadly you can’t always make them see it (or want to see/understand it.)
Best of luck.
Funnily enough I have always felt much more able to work out the thought processes of my son with autism than my neurotypical one. If the autism spectrum were a bell shaped curve Im not sure where I'd be. Maybe that is why the school don't see what I see?
Does emotion coaching work? Lately it does, perhaps it has not alwsys. I notice an immediate relief when I say simple words like 'I can see you are getting stressed'
Comic strip conversations work well too.
We did try matial arts a while ago. At the moment he has a strong musical identity so hence the drumming. He's also the age where he just wants to fit in and be liked. He told me he wished he didn't have autism.
Its hard to see such little everyday things being such a big problem.
What I found worked with my own daughter and I know others have found useful to is martial arts. Sounds completely wrong but the repetition of drills, clear rules, an outlet for energy and the discipline it brings can be transformational, but obviously won’t work with all.
Your post makes a lot more sense now that you give the back ground in my humble opinion as some of the frustration felt would appear to be professional as well as parental. Schools not making parents aware of their approach to discipline is something I’ve found to be pretty much universal and there is a lot more that could be done to educate parents as to how schools are dealing with things as a whole.
Before I ask the following question please take it in the positive way it is meant and not as a criticism. How often do you take a step back and ask yourself whether your coaching is helping or or hindering? I know my own daughter, as I do, only learns from her mistakes and trying to coach or give advice can wind up or be infuriating particularly if it doesn’t tie in with some small logical detail from a previous piece of advice. Also rules can get way too many and too complex and there can be too many exceptions, the reason I can’t learn foreign languages but can learn new computer code easily. To help an autistic person you have to think like an autistic person and not s neurotypical person. Everything we do is driven by absolute logic from finding a dark quiet space to running away, from putting trousers in a freezer to then cool our legs to only eating certain vegetables. Or to put it another way “you can lead someone on the spectrum to the neurotypical world but you can not make them accept it or join it”.
A final thought, I’ve always found writing to a school and stating that your next letter will be to X the head of the education department tends to get them to sit up and actually listen and implement.
Many thanks. I absolutely want other children to feel safe around my son. I just know as a parent and professional that it is teachers who can make the difference.
I think it would be really helpful for the school to have training. I think if they understood my son better they would be able to recognise hid anxiety and respond early and help him recognise and regulate his emotions like we try to at home.
Thanks for your response.
I realise in my initial post I may not have given 'thete other side' but it is something I have contemplated.
I am not sure what you mean by formal assessment. If you mean a diagnosis then yes and I would not have said my son with autism otherwise. If you mean an education health and care plan, the answer is no.
I am a former teacher and my current job actually means my day to day role is supporting schools in these situations. My last job involved specialising in autism delivering training to parents and professionals. I think I am fairly qualified around what a school should and I certainly understand it is not easy.
Perhaps if they would even acknowledge this it would have been easier.
It is in the new sen code of practice and the teaching standards that ALL teachers are teachers of SEN. This means that even though it's tough then it is a part of every teachers job. Schools also get delegated budgets if £6000 on top in the £4000 for every child which is address targeted needs without an EHCP.
We had a meeting in school 8 weeks before the incident. The school agreed to put a lot in place but did not do do. They wanted a referral to children's mental health services. This was declined on the grounds that the school had not yet implemented anything.
Funnily they did not talk to me about their use of behaviourist approaches which are nevt going to prevent anxiety driven behaviours.
What do I do? I encourage my son to scouts and drum lessons, I invite friends over. I have taken my son to numerous clubs and activities whenever he has shown an interest. Often the clubs are not structured so he becomes stressed. I do a lot of emotion coaching and work with the zones of regulation. I listen to my son. I try to keep calm. Things can't just be done at home as children with autism struggle to generalise.
I'm not perfect. No parent is.
Hi Andrew can I ask who's post you are trying to it has come in my inbox and wasn't sure as I haven't posted this and it seems like you are replying to me? Sound advice though! So thanks for that
Hi
I am sorry you are having difficulties but there are always two sides to everything. Integration is meant to mean that all children are treated equally and that is what appears to be happening in line with government policy. Teachers can also not be experts in all areas, hence it is quite normal that a teacher or head teacher wouldn’t know about specific methods, in addition they may have already considers other things. The other problem to be aware of, is that the way children behave in school and at home is often very different, and the description of an incident from different individuals perspectives will also be very different. Any child needs guidance, boundaries and rules, they help in the short and longer term, hence the school will be using a rewards and sanctions based policies in order to encourage behaviours that are acceptable within agreed boundaries.
One thing you do not say in your post is whether your son has a formal assessment or not?
Please remember teachers are responsible for the safety and education of twenty to thirty children at a time with very little help. Hence, they do not have the time and resources to concentrate on looking after one pupil and any unsafe behaviour has to be dealt with swiftly in order to safeguard the group. If the foot was on the other shoe and someone pushed your son into a road how would you feel?
What are you doing to help your son increase his circle of friends? What activities does he do outside of school? As a school is there to educate and can not force kids to be friends with each other. What jobs does he do around the house to increase his independence and confidence? How are you helping him develop as that’s your responsibility and not the school’s?
An autistic dad, of a likely mildly autistic daughter, who until recently was a single dad, now married to a teacher who has done a lot of autism training in the past.
Andrew
Dear NAS24582:
Of course we're unreasonable parents always defending our loved ones! And truly, why wouldn't we be? We often know our children better than schools or other community members, particularly when they have special needs. The one caveat tho is knowing just what goal we have for our kids & drawing in the support necessary to help them achieve it. Perhaps a perspective change like that might help? Approaching school & church with a goal & helping those organizations to provide appropriate support might help in the long run. So perhaps the goal for church is say, remaining in his seat quietly for 10 minutes of the service: would using "fidgets" help him do that; would a peer mentor help; would you sitting w/him help; would taking him out exactly at 10 minutes when he's successful, rewarding him & then returning him for 10 minutes more help? These folks don't have children with autism & even if they do, don't have your child so perhaps shifting to goals & a perspective that you need to help them help your son would work? The same in school might go a long way too. As another parent of special needs children & a former teacher, I get the frustration all around. If your boy acts out physically, my child may be injured or very frightened; as a teacher, I may not know exactly how to keep both your son & others safe. Ultimately, our job is to help our kids learn to get along in their communities. It's far from easy & we have far from just systems in place, but it helps me to approach each step as a limited goal in which I'm helping others help my children & modeling success for them in the process. Hope it helps & best of luck.
Thanks kerri. I have been in touch with a few different organisations and written to the school to say I feel they have acted in a discriminatory and also failed to make a reasonable adjustments.
Think they just think I'm being difficult :-/
I am sorry to hear about your difficulties with your son and his school.
You may want to contact our Education Rights Service who provides information, support and advice on educational provision and entitlements. Please see the following link for further information: http://www.autism.org.uk/services/helplines/education-rights.aspx
Regards,
Kerri-Mod