A few months ago I attended FestABLE, an event dedicated to SEND and inclusion. I was so excited to attend, to meet friends, other parents, educators and professionals and I arrived with a mental list of the talks that I was looking forward to hearing. There was a lot going on and it was a large venue, but the detailed programme and map helped me make sure I knew exactly where to be, and when. After a few hours of meeting people, chatting and attending talks, I began to feel quite overwhelmed. I needed some quiet time on my own to relax and reboot, but one of the talks I was desperate not to miss was about to start. What if I went and sat outside for a while and then went into the talk? That was a scary thought because what if I disrupted it and all of those people turned to look at me? I was beginning to get more and more overwhelmed so I made a decision that I must put my needs first. I found my way to one of the smaller cafes which was empty apart from a smiley Lady behind the counter. I wonder if she knew I was anxious because she left me alone, which is exactly what I needed at the time. To my delight, inside the cafe, there was a large screen showing the talk which I had wanted to attend. I sat alone, drank some water, watched the talk, calmed and my day continued stress free.
This described what I and others did and provided, but what I’d experienced, I believe, was inclusion.
A teacher on Twitter, who I have great respect for, said she wasn’t sure if she actually achieves inclusion, but that she tries to. Knowing this teachers approach towards inclusion, difference & SEND in general, I felt strongly that they probably are, and that by questioning whether they’re achieving inclusion or not is really a positive thing. I’ve seen conversations from other educators who make big statements about how inclusive they are, but the thing that confuses me is that they rarely, if ever, engage in conversation around it. Achieving real inclusion is certainly something to shout about, its rare these days so why wouldn’t they want to discuss more? Share good practice? Is inclusion ever achieved to a point where we can sit back & don’t have to do anything else? Possibly for some, probably not for others. Therefore is it sensible to have more confidence in those who continue to question whether they’re inclusive and who engage in discussion to keep learning and developing ideas?
What is the first, or most important thing to consider in order to achieve inclusion for all? Are any considerations more important than others? I asked parents and educators on Twitter to share their thoughts. These are the key words used; management ethos, courageous leadership, attitude, strategy, solution focused, enablement, role models, culture, truth, individuality, belief, belonging, compassion, respect, feeling considered, integrity, awareness (that not every need is obvious) and the ‘will’ to make it work for all. Looking ahead, I struggle to believe that inclusion is something that’s achieved and can then be left. If its truly valued, then good practice would suggest it needs and deserves constant monitoring and review as needs adapt and change perhaps they increase or lesson and/or improve. On the surface, I appreciate that this sounds like a lot of work, but if we consider the key words above, if many of those things were truly present and prioritised in a community, monitoring and review would come naturally. It would happen all the time, everyday ideally to the point that we won’t even realise we’re doing it. It just ‘is’.
So what actually is inclusion? One formal definition is ‘The act of including and the state of being included’ but is this specific enough to use in order to start making an environment and community inclusive? It should be, but I’m not sure it is. Should we make sure that, although each situation will vary as to what is needed, the foundations, and more importantly the culture of inclusion are understood by all? For me, inclusion is not just about disabled children, it’s about all children, all adults and environments. It includes everyone & everything but it also involves everyone and everything. Inclusion requires action but it is fundamentally a mindset, a way of being at all times and in all environments.
After many discussions with children, young people, parents, teachers and professionals about inclusion, it appears that there are common themes and problems stemming from lack of inclusion. There are also common themes around good practice. The following ideas and suggestions are based on those discussions.
1. The community is a whole. It isn’t separated into categories such as SEND & non SEND. In a school for example, they are simply children with varying degrees of needs and skills. Obviously it’s important to recognise disabled identities and to be fully aware of, and understand individual needs, but an inclusive situation is one where many disabilities won’t impact involvement.
2. Adapting the environment for physical needs such as installing ramps and accessible toilets could be considered to be the more obvious adaptions that are made to include, but consideration of physical adaptions also need to be for those with hearing impairments, visual impairments, sensory needs, language, literacy needs and others too. An inclusive environment includes all and benefits all so adaptions to the environment are most likely required, however they won’t necessarily be diagnosis or SEND specific, they could potentially help many other too.
3. In addition to environmental adaptions, consideration of our actions and words are crucial. What do we do, or don’t do? What do we say or don’t say? Perhaps we should do and say more, perhaps do or say less, or maybe we should do or say things differently. Evaluation and monitoring of both words and actions I think, are very important because they not only encourage the correct culture by providing positive role models, but also in terms of including all who struggle with identified and unidentified difficulties such as developmental language disorder, hearing impairments, processing difficulties, mental health difficulties where our words, actions and the approaches we use can be either very helpful, or really unhelpful.
4. There is a great deal of untapped knowledge and skills in communities and in schools. By involving parents, children and professionals, and by doing so in various ways, allows everyone to benefit from a collective knowledge and skills pool. It helps everyone to be involved in the discussion around needs, but also around solutions. By including families and looking at what works outside of school, solutions can be collectively and effectively problem solved. For example, is an autistic child at a disadvantage when they are in their favourite and safe space, not having to interact and only doing things of their choosing? Unforeseen situations could arise, but they’re probably not. Obviously it isn’t realistic to recreate every child’s bedroom in school, or to allow them to spend all day in playing xbox! However, by looking at factors in those environments and activities and noting skills which are and are not being used as well as those being avoided, it could reveal a great deal of information about needs and about how to adapt things to encourage inclusion in school.
5. ‘Support’ and ‘independence’ encourage vastly varying views and definitions. Inclusion absolutely can help children develop or achieve independence but the views of what is meant by ‘independence’ are as varied as definitions of what inclusion is and isn’t. For me, Independence means achieving things with as much or as little support as is needed. It doesn’t mean being able to do things unaided or without any support and support can be provided in numerous different ways. It isn’t always in the form of a piece of equipment, a printed resource or even an action from someone else. Support can be having some time away from the group, which is fine because we don’t have to be present continuously in a group in order to be or to feel included in it.
6. I’ve seen definitions of inclusion which only really describe a child being present in school or in a classroom either full or part time, but is this accurate? Unless that child is also fully included, happy, learning and achieving to their individual potential, and unless they are they a fully valued and included member of the community, then that can’t be inclusion, surely? Possibly a more important factor to consider is the degree to which they want to be included. A friend’s 8 year old disabled son wrote ‘I really really just want to be part of everything they are doing’, however another child might struggle with a class topic or assembly’s and need the option to leave. Whilst its important to include everyone, it is also ok to opt out sometimes and understanding and allowing this, is being inclusive.
7. Anyone who knows me knows that I don’t think its accurate or helpful to call rooms or units that segregate children, often for behaviour difficulties, ‘Inclusion rooms’. Going back to the key words, honesty is important, so if that child is there for their safety and the safety of others, or to avoid exclusion, even if the aim is to support them to reintegrate back into the community, then surely being honest about that drives focus towards the support needed in order for them to be fully included again? There are obviously countless reasons for behaviour difficulties, however in terms of inclusion, if a child is struggling with behaviour to the point they need forced seclusion or exclusion, it is certainly very likely that there is an issue with overall inclusion in their community and environment.
Working towards inclusion for a diverse community will undoubtedly take a great deal of thought, time, knowledge and perhaps training but the end results will benefit everyone. No parent wants their child to ‘cope’ in school and I’m sure educators don’t either. High expectations are vital but they must be based on inclusive foundations in order to enable all children, in particular children with SEND to thrive not simply cope.
Who to follow on Twitter for SEND advice
Here is some basic info about using Twitter. I think Twitter is amazing and I’ve reached amazing people I could never otherwise have hoped to, but it is important to be careful what you tweet and remember:
1. There is no Edit button
2. Anyone can read your tweets. Even if you restrict your account, there is nothing to stop someone taking a screenshot and sharing.
3. Deleted tweets do not remain deleted. They can be recovered.
Take care what you share on twitter. (This advice was written by another parent.)
This list isn’t definitive, these people can help to connect you with others.
Which adjectives come to mind when you think of a SEND parent? A warrior? Agitator? Tenacious? Unstoppable? Strong? Annoying? Unrealistic? Over anxious? Something else? The processes around SEND can bring out the best and worst in all of us, but behind every irate parent, is a child who is struggling. It’s our job and human instinct to protect them however we know best. The way we do this and react, is of course our responsibility, but it’s only fair to keep in mind what it really means to be a SEND parent. Here’s some of the things you need to know about us.
We didn’t choose this path.
As much as I wouldn’t change my children, and I genuinely mean that, who would choose to have to navigate countless professionals, appointments, appeal processes, legal jargon, LAs? It’s rarely our children who cause us the greatest struggles. It’s often everything else, especially accessing education, support and services.
We don’t get a day off.
Think about a Tribunal process, when everyone involved gets to go home at the end of the day and ‘switch off’. We don’t. We can’t. Can you imagine how terrifying it is to feel like you can’t cope, but the fear of judgement, stigma & perhaps even social services, stops you from asking for help? Would this happen if the child didn’t have SEND? As soon as SEND is mentioned, it’s often assumed that is the problem and It’s often not the case at all.
We don’t enjoy fighting.
Tribunals, Judicial Reviews, formal complaints are tiring. They often leave scars and take away so much precious family time. Who would choose to spend their weekend studying the CoP for an upcoming Tribunal over spending time together and having fun?
We’re not stupid!
SEND parents are often the most informed on SEND Law and their children’s rights and those who aren’t, often ask others who are. I was easily convinced that unlawful practices were great ideas in the early days, but when I saw the damaged they caused, learned about my children’s rights and appealed, it ruined relationships with the SENCO and teachers. So much precious time was wasted when small, mostly cost free, reasonable adjustments would have made a huge difference. The result was a disability discrimination Tribunal, and them needing costly specialist placements, so assuming this is ‘cost saving’ is simply wrong.
Work with us. We can help.
Our children are the experts on their needs, but we know our children best. We’ve often had to work out strategies to support them in countless ways, so why not tap into that knowledge as valued partners? I don’t want to ‘participate’ with professionals in my children’s education & development, I want it to be a partnership.
We respect honesty.
If you don’t know, please just say that so we can work things out together. This applies to all areas of our children’s SEND. As a parent, I have a lot of respect for people who admit what they don’t know. Those who obviously don’t know, but insist they do can be very harmful towards our children.
Understanding and real support goes a lot further than sympathy.
We don’t need sympathy, we may need empathy, but we mainly need to feel like a valued member of our child’s ‘team’.
It’s not uncommon to feel overwhelmed by noise, movement etc, but for children with sensory processing difficulties, this can impact their ability to function, focus, and learn. When we refer to sensory processing, we don’t only mean sight, taste, hearing, touch, smell. It includes numerous other senses such as vestibular and proprioception. Autistic children, and those with ADHD often have additional sensory needs, however it is not limited to autism and ADHD. Also children without any additional diagnosis can have SPD.
‘SPD is a neurological condition that interferes with the body’s ability to interpret sensory messages from the brain and convert those messages into appropriate motor and behavioral responses.’
Sensory difficulties manifest in a variety of ways. Some children are over responsive, taking in too much information, and some under responsive, not receiving enough. Some are a combination of both. Some of the ‘behaviours’ we see are; banging and crashing into things, finding it impossible to focus, displaying aggression towards themselves and others, withdrawing from activities, seeming constantly lethargic and numerous other things. To find out more about sensory processing and ways to help, I’d recommend ‘The Out Of Synch Child’ and ‘The Out Of Synch Child Has Fun’. However, the best source of learning comes from the child, with guidance from an Occupational Therapist and parents.
Here’s my top 10 tips for helping children and young people who do, or might have sensory processing difficulties.
1. Look for triggers. I found the best way to do this is to keep a diary or log of events. Write down what you are seeing but also take note of what is happening around the child. What is the environment like? Is it noisy? Busy? What has just happened? Have they recently been active? What is about to happen? Are there changes coming up? Look at the information you’ve gathered to see if there is a pattern.
2. Environment is key! Reducing sensory input and providing specific support can really help. I always think of a reception classroom when I mention this, because it has pretty much every ‘sensory’ area covered! Displays everywhere, things hanging from the ceiling, lots of children moving about, noise, movement etc. If they need to focus on structured tasks, think about removing as much as you can from the environment, or providing a separate space free from additional sensory input. This could be a bare workstation or a pop up tent.
3. Some children crave noise, but can also cover their ears at noises too. This is because it is often its specific noise they crave, or can only cope with noise which they have control over, or which they are making. Children who are over sensitive to sound, often benefit from ear defenders. If they don’t like these, try in-ear headphones with quiet music playing. It can actually help them to focus.
4. We are all unique and individuals. What works for one child might not work for another and can make things worse. For example, weight can help calm senses if the child is over responsive, but weight for a child who is under responsive can make their ability to engage, reduce. Vibration works in a similar way, in that it could help an under responsive child become more alert, but for an over responsive child, it could make it even harder for them to engage.
5. Occupational Therapists often recommend join compressions and body brushing. This might sound alarming, but I can assure you if the children need this input, they soon learn it helps & come and ask for more! It is a way of allowing them to know ‘where their body is’. That might sound odd, but if you imagine having a numb leg, you possibly instinctively stamp your foot until you feel it in a normal way again. Although this isn’t about numbness, it’s similar in that you might find these children bumping into things, hitting themselves or numerous other things in order to gain the information their body needs. They could try doing joint compressions themselves by doing wall push-ups, lifting themselves off their chair with their hands whilst seated, hugging themselves, putting their hands palm to palm and pushing as hard as possible 5-10 times.
6. Sensory circuits are brilliant, but they need to be carried out in full. They involve an ‘alerting’ activity, then an ‘organising’ activity, finally a ‘calming’ activity. It isn’t always helpful to recommend ‘running off spare energy’ because many of these children are already overstimulated, they will need a reduction in sensory input and calming, rather than more. That’s not to say structured exercise won’t help, it often can. Be led by the child, get to know what works for them. There is more information about sensory circuits and ideas for activities online if you google ‘sensory circuit ideas’.
7. Consider what you see, to be a clue to what the child needs. For example, if the child is purposefully running into things or people, they may be looking for a way to alert their body. If this is the case, ‘deep pressure’ activities could help. The OT might recommend joint compressions, brushing, using a hug-jacket or weight, or you could try putting a few heavy books in a rucksack, asking them to carry heavy items from one place to another.
Sleep is often another issue, but strategies can be included in night time routines to help. Nice smelling baths, soft lighting, different coloured light bulbs (UV ones are fab!) Rolling them up in their towel to provide deep pressure, tight PJ’s etc.
8. Many children don’t want to feel ‘different’, so they might avoid or refuse support. You can try disguising them as ‘helpful tasks’ such as pushing a heavy box across the floor, carrying the shopping bags in, doing the hoovering or other housework tasks. Cycling, climbing, running etc are helpful. Provide them with a rough sponge to shower with in the morning and/or a rough towel to dry themselves on. This will get a form of body brushing into their day. Buy them tight vests to wear under their clothes. The key is to be creative, get them onboard and follow their lead.
9. Have fun! Try using songs and rhymes along with joint compressions or brushing. Set targets or goals in sensory circuits to make them more motivating. Do the activities with them and/or in groups so they don’t feel singled out. Let them try them out on you first if their anxious. Allow them to be in control at all times. If they don’t want to try something, get creative and think of other ways to provide the same input. Teeth brushing used to be a big battle, you can’t really allow them to choose not to brush their teeth, but you CAN make it fun. Sit in front of a mirror so they can see what’s happening, (if a child has issues with body awareness, the mirror can help. It can also help with a feeling of control). Sing a silly teeth brushing song and take turns for 5 seconds saying ‘your turn, my turn’. Try an electric toothbrush and various toothpastes. The flavor can be a big no-no for some kids! Clothes can cause big problems, so take them shopping with you, or order a few choices online to try at home. Let them feel the textures and try them on (if possible). Get seamless socks (Primark sell these) & be prepared to cut all labels out of clothes.
10. Sensory processing differences morph, and this can happen a lot! Just when you think you have it nailed, their needs change and something they loved last month, is now the root of all evil! (The exact terminology my son used to describe his *very expensive* vibrating cushion, just 1 month after he begged for one ‘just like the one at school’). This is why I wouldn’t suggest spending lots of money on various sensory equipment unless recommended by a professional of course. There are ways to make or use cheap alternatives and still get the same input.
I hope this is helpful in some way. I couldn’t possibly cover all the possibilities, but please ask if you need ideas for a specific problem. I might not have the answer, but someone will and I’m happy to ask on your behalf.
When we talk about headaches, people say “I get like that all the time”. We can empathise, share a common problem, suggest solutions etc. It’s not the same with neurological differences, yet it still happens.
If we talk about ADHD simply in terms of attention, it seems to prompt people to comment “I’m a bit ADHD”, “I often get distracted” or “I find it hard to pay attention to….” Is that because people understand ADHD to be simply- struggling to pay attention? Possibly, but It’s not as simple as that, and that is what has made me want to write this blog.
I’ve read numerous life stories of adults with ADHD and the very real struggles they’ve been through. Reducing it to an ‘attention problem’ somewhat dismisses all that they’ve experienced, especially when most of their struggles were due to a lack of early diagnosis, understanding and support.
These are some of the topics covered in the ADHD life stories:
-A teenager, living in a big city with no danger awareness.
-A child at school, so impulsive, that they say the first thing that they think of, but upset and offend all their peers in doing so.
-A teenager always ‘daydreaming’ and forgetting homework, so they’re constantly in detention & being told off.
-An adult needing a better job to support their family, but can’t study because they’ve no idea how to start.
-A person with all the answers & bucket loads of knowledge, but a brain that makes them dart around 1000 different things before they can access it. There is no direct route.
-A body and mind so exhausted it needs rest, but a brain that simply won’t allow it.
-A person trying hard to focus, but with every sound and movement it gets so much harder.
-A person with huge ideas, but no ability to structure them, let alone finish them.
-Huge emotions (good and bad) and little ability to regulate or process them.
-A child trying so hard to stick to the rules & blend in, but getting constant negative feedback (sit still, stop rocking on your chair, put the pencil down, stop fidgeting)
-A lone parent who has such problems with organisational skills, that they can’t manage the families finances.
-A person who has experienced so many failures & negativity, that they have serious mental health problems or a mental illnesses.
This is what worries me. If we reduce ADHD to ‘an attention problem’ we ignore the impact ADHD can have on lives. If we don’t challenge comments like ‘I’m a bit like that too’ what does that say to the people living with ADHD?
Any parents of children with ADHD reading this, it’s not all bad (and no, I’m not just saying that to add some cheer!) This isn’t a list of what your child will experience. If they have a diagnosis, then you’re reading this because you want to understand. That’s half the battle won. Living with real understanding (and in my case, taking medication) can change the direction in which life travels. Understanding we’re not ‘faulty’ we’re different, and to be completely accepted as who we are, is so powerful. It can turn lives around.
Would I cure my ADHD? No, It’s part of me and suggestions that we should normalise differences, goes against the diversity of what it is to be human. Would I want more people to be able to harness and understand it? Absolutely, but to do that we first need to understand ADHD as a neurological difference and the first step, I think, is accepting that it’s not just about attention.
I wanted to point out the impact ADHD can have on lives, but also what it brings. ADHD gifts include, limitless and non stop ideas, no boundaries, thinking BIG! Humour, hyper focus, huge positive emotions, loyalty and loads more. Real understanding can help to harness these gifts. This is why challenging stereotypes & dismissive comments is so important.
The following website has lots of blogs, information and videos, made by people with ADHD to help explain ADHD. It’s awesome!
All images in this blog can be found here: Credit: Caroline Kee
- Parents push for incorrect diagnoses
- Children are diagnosed incorrectly
- Parents are rude & aggressive towards teachers
- Parents need to discipline their children
- Parents are never happy with SEN support
…… you get the idea.
When teachers make comments or write blogs which contain such big statements, they immediately alienate parents, the very people they are trying to work ‘with’. Why? What possible good can come from that?
Now insert the word ‘some’ into those sentences and I’d imagine many parents would agree that these things are possible.
I’d like to take this opportunity to say that I’ve never ‘pushed’ for a diagnosis of anything. Some may think I’m lucky, some might think I’m lying, nevertheless that’s still our experience. All of my children have been diagnosed via multi-agency assessments and I’ve ensure they have been thorough assessments (even checked the qualifications of some of the professionals involved!). Personally I think this is the best way to assess and diagnose, but that’s my opinion. Teachers haven’t always agreed with the diagnoses, and in a few cases this has caused my children harm, but that’s not what this blog is about.
I’ve never raised my voice or shouted at a Teacher. Even during or after 4 educational Tribunals, 1 Judicial Review and taking one school to a 5th Tribunal for disability discrimination. They were all extremely stressful experiences, but I don’t think that shouting or threatening anyone, let alone the very people I was trying to work with, is any way to behave and it certainly would’t have helped.
I don’t hate Teachers, I genuinely admire and respect the vast majority of them. I see they are trying to do a very difficult job under a huge amount of pressure with very little support……doesn’t that sound familiar though? *SEND parent*. I’m over the moon with the support my son gets in school now. Yes it’s been a long and often bumpy road, but his current Teacher is brilliant & he’s thriving.
SEND parents often have a very hard time navigating their children through education. We often have to fight very hard for our children, and as a result may well be expecting the next battle, but that doesn’t mean we are blinkered to the wider problems, or that we don’t want to help. Some parents have professional experience, expertise and skills that can really help problem solve issues.
So Teachers, please don’t alienate the very people you need to work with in order to make your job easier. Please insert the word ‘some’ into your statements, bring us into the discussion and let us try and help.