Fight Club. The Rules of Literacy and Angelman Syndrome.
Updated: Nov 11, 2022
If you would rather skip the blog and just watch the video, AAC SIG have shared mine for free, please click here for link. If you are in any way interested in literacy, I would highly recommend paying the £10 for full access to the AAC SIG. You get all the recordings from the day, previous years and another two study days this year. For the same price as a decent bottle of wine. Buy the wine too, I am not suggesting a sacrifice, just a comparison! Just to confirm, the content of the video, blog and slides are all slightly different for those who want to see all the platforms!
The ever excellent Jane Farrall was presenting all day. I suspected my element would be literacy at home, something I have experience of. However, Tina Voizey had other ideas; could I discuss the struggles that we have had and even use the word fight in the title? I paused. Could I do it and still make it acceptable if people who knew us saw it? I could try to inject humour. So I decided to compare it to Fight Club, the 1999 movie. Although it did strike me later as ironic. The first rule of fight club is you do not talk about Fight Club. The second rule is YOU DO NOT TALK ABOUT FIGHT CLUB. This is true of trying to get comprehensive literacy instruction for your child. Sure, you coax, talk, coerce even. But, above all you need to not be seen to fight. After all, your child is in that system for many years. It doesn’t do you any favours to fall out with everyone. Much as it can be frustrating. So here we are, still members, 2 years to go. Am I ready to lay my whole hand out bare? One of my own rules was you have to believe, and you have to be prepared to fight. I set myself up for this…
It doesn’t start as a fight. It starts with discovery, enthusiasm, an awakening. There is a way my child can improve communication and literacy skills! Imagine the possibilities this could open for her. And it is not even difficult! It makes perfect sense. So off you go buoyant and ready to change your child’s experience and those around them. After all, who could not want a better education for your child. But hold on, you are about to tell some professionals that you know how they should be doing their job. Not only that, but that they have been failing the children that have gone before! Perhaps not as easy a conversation as it first seemed. And so sadly, all too often you get pulled into Fight Club whether you want to be there or not.
Here are the original movie rules.
And Literacy Fight Club Rules
1st rule: You do not teach literacy to children with learning difficulties and complex communication needs.
2nd rule: You do not teach literacy to children with learning difficulties and complex communication needs.
Sadly, there are very few educational establishments teaching literacy well for children who have complex communication needs and learning difficulties. Sometimes children do better in mainstream in the early years. But often other difficulties crop up and often children end up in a specialist setting. The main problem in specialist settings is they think they know how to teach children with disabilities. And they think that should be different than how we teach everyone else. Tasks are broken down to such an extreme level that it is exceptionally difficult to progress. Children don’t learn, and everyone thinks it is the fault of the child and the disability.
Here is the actual truth. Until we teach the children, we do not know what they are capable of. It’s not cruel, it’s certainly not detrimental to them. Do you know there are a band of people now calling those with PMLD “sensory beings”? How condescending. Whilst we are at it, can we just get rid of the term PMLD. How do you know at diagnosis what someone is capable of learning? This is just another excuse not to teach. Let’s ban it.
3rd rule: Everyone yells "Stop!", the fight is never over.
Just when you think things are going well. Child doing well, a good team of support staff. Finally they have proven themselves. This is it this time. It can’t go back from here, look at all this fabulous work. BAM!! Change of staff and suddenly you are back to letter of the week… And so the cycle goes on and on.
4th rule: Divide and Conquer : Only one child and maximum two parents, but many professionals in the fight (and never ever anyone else’s child (otherwise known in Scotland as “hauners” (to have one’s friends provide support in fisticuffs)).
As parents you are invited last to meetings; you know that there has been discussion about you and your child that you have not been party too. It may not surprise you to know that I am not intimidated by meetings. Equally, I am fortunate enough to never have been spoken to in the way that some of my friends have. Being condescending towards and dismissive of parents is never acceptable. Their eloquence and education levels should never detract from the fact that they are the most knowledgeable and qualified person in that room. Unless, of course, their child is there. And don’t even suggest that another child’s situation (or even an entire group of them) is comparable and perhaps even sensible to be taught as a group.
5th rule: Multiple fights at any time.
Here is another reason to go easy on parents. Of course, I advise every parent I know to be calm in meetings and to keep it friendly. It is not in the child’s best interests to have the significant influences in their lives at loggerheads with one another. But I was once at 4 meetings/appointments in 24 hours. The last meeting was a complete waste of my time and energy, with a so-called professional who had nowhere near the knowledge that I had gained by that point. I held it together, but I think I could have been forgiven if I hadn’t. Any professionals out there with kids, it’s exhausting right? We are so pressured to do everything perfectly. That is hard when we are an imperfect species. Then you go to work and these disabled kids you are dealing with are really hard work too. Yup, it’s tiring. But what if you reversed that? What if you had the kid that didn’t sleep, had multiple appointments a month. Different schools for different kids. Plus you are trying to figure out how you do everything differently for this disabled child, because everything has to be different right?? No, but that’s a different blog post. The point is cut the parents some slack. In fact, cut everyone some slack. If someone snaps it is not personal, that person deserves empathy, not anger. The chances are the parents you see are more exhausted and have more fights than most.
6th rule: No teaching, no accommodations.
Please, please, please just adapt comprehensive literacy instruction. You can use any books, topics, whatever you like to fit it into your school. Until you do this, and all teachers are actually teaching every day, the individual accommodations cannot possibly be known about. Think of the shared workload, the shared understanding. Teachers who know what they are doing and kids who are learning more. Why is every school not just doing this???
In my talk I mention some of the accommodations specific to Leia, but I promise I am going to write a different blog on that.
7th rule: Fights will finish as soon as school is over.
It your child is still in Primary Education, look away now. Seriously, this is stuff that will keep you awake at night and you don’t need that right now. Just in case Leia is reading this, don’t get excited darling, I will keep you learning until you retire. If not beyond. I am still learning literacy skills (just ask my husband), so you don’t get off that easily. But, what is absolutely unacceptable is that pupils leave school with no real options to study. They can attend a course, but it does not further their education in the same way mainstream courses do. On the chat during the presentation someone asked me what the alternative should be. The alternative should be that no matter the level of education you leave school with you should have an option to improve on that. The qualifications required for mainstream courses should be reconsidered. The assessments could be altered. In short, people with disabilities should be able to study for interest and to improve their education. We have many establishments offering education. The just need to make them more accessible.
8th rule: If you believe, you have to fight.
No-one should ever feel guilt when they were working with the information they had at the time. I know that is hard. I can be stopped in my tracks when I think of things I have done. I can feel physical pain. But it is not helpful, and I cannot change it. What I can do is learn from it and move on. Burying your head in the sand and pretending that you are doing a good job is compounding to your guilt. And please, for those of you doing the good work, shout it from the rooftops; share, share, share. We so desperately need to hear these stories. Parents should never feel like they are the ones providing all the education for their children. Okay I took it to the extreme with a complete career change. But I was perfectly happy in microbiology. . I am not suggesting everyone needs to go to my lengths, but we do need this to change. If you know about comprehensive literacy and you aren’t acting on it you are part of the problem. You are denying people their human rights.
Here are the new rules. Let’s make it happen.