So often on SNJ we talk about the difficulties faced when getting SEND help. But if you're new to the area and you've only just discovered that your child might have a special educational need, this might all be a bit overwhelming.
If your child has a clear or suspected disability or need from birth, you may have been alerted to this while you were still expecting, or soon after birth if it wasn't picked up in routine screening. The good news here is that you should be offered support and information (in theory at least) before you even leave the hospital with your baby. Of course, that may not be for some months, if they need stabilising or immediate treatment is required.
If you know your baby or child has additional needs from a very early age, and you haven’t had access to Portage, please check out The Portage Association website Some Portage services start from birth and there should be no cost. Find your local Portage service here. Additionally, our columnist, Hayley Goleniowska, has written about her experience of Portage for Natty here.
Emerging special needs
But this article is not focusing on children like these, although many will still find the tips useful. It’s more about those children who get to school before a special educational need begins to be suspected. The acronym used for this is SEND, which stands for "special educational needs and disabilities".
You may have had a niggling feeling that your child is somehow 'different' before they started school but without being able to put your finger on why. I remember asking our health visitor when my eldest was only 19 months old, if she thought he was.... autistic? I didn't even know what that was really, or why I thought it. But although he was an early walker and talker, and advanced at doing puzzles and so on, and despite the fact I was a first-time mum, I still had this feeling that my overly wilful son was not the same as his fellow toddlers.
Even after his diagnosis, first with ADHD at six, then with autism aged seven, if you'd asked me to describe his autistic traits I would still have had trouble putting them into distinct sentences. Often, other people and even relatives would say, 'well they all do that, don't they,' but no, not in the same way they don't.
What should I be looking for?
I could write a list of traits or behaviours that might indicate your child has SEND, but they would be traits seen in many children. The difference is when those behaviours disrupt the child's "normal" functioning. For example, lots of children have sleep difficulties, but a child with SEND might have long-standing issues with falling or staying asleep, or might wake at 3am and be done with sleep. Every night. For months or even years.
They might have eating problems and, of course, lots of kids are finicky eaters. But it's different when they have meltdowns when different foods touch each other or only eating a small range of food, or food that's a certain colour, or refusing to eat certain textures, or refusing to eat much at all for long periods of time.
The same can be said for all sorts of developmental milestones from toileting to social play, to being able to focus or talk or write or read. There is a wide variety of what comes under the umbrella of 'normal' and sometimes, it can take a long time to convince anyone else that what you are seeing with your child is not within these boundaries.
Other worries can centre around talking and listening, physical skills or a child's emotional or mental health, or their behaviour. I mean what exactly is normal?
He's just a naughty boy, isn't he?
No, he probably isn't just a naughty boy at all. Children are not born 'naughty'. Behaviour is communication, and frustration, particularly when a child doesn't have the words they need to express themselves. They probably don't know themselves why it's so hard to sit still, or why they feel like there is an engine driving them to run around the room when all the other children are sitting calmly on the carpt at circle time. They probably don't know why certain smells or textures or lighting or noises upset them. They probably couldn't tell you that it was the almost inaudible buzzing of an overhead light that led to a meltdown. They almost certainly don't know why other kids don't want to play with them or think they're weird. What's more, their teacher may not know either. With a busy class to supervise and educate, the first the teacher knows about it is when they see the result of the behaviour.
Now, you may be lucky enough to have (or be) one of those diamonds of teachers who, despite the pressures of educating 30 other children, has noticed that your child is 'triggered' by certain things, or that they have an unusual gait while running or a unique way of holding a pencil. Or perhaps they've spotted a spiky learning profile that says something is off; maybe the child is a great reader but can't write, or maybe they're very bright a maths but can't spell at all. Or maybe they've noticed your child falls over their own feet and is constantly away with the faeries, when they should be paying attention. If so, they may be the ones to come to you with a concern and you can discuss it together.
But the chances are, they won’t spot those things and, as they see a wide range of abilities, they may not realise that your child's apparent capabilities are nowhere close to what you, as their parent, know they can do. This may be particularly true if they are very bright but their grades are average. A busy teacher may think these marks are not unusual or they are just slow at picking up new things. As their parent, you see them much more clearly at home so are in a better position to see what they can do when they are relaxed and engaged.
What to do? Some ideas to help
My concerns about my eldest’s differences slowly mounted up. From insisting on the same colour plate and cup every day at pre-school or refusing a snack, to charging around, (or more likely, through) other kids during play, to the unforgettable Ikea meltdown incident, to being given a "behavioural chart" within the first few weeks of reception. Each incident by itself could be shrugged off. But when you paid attention, they became a pattern. And patterns become evidence to use when seeking further advice.
I decided to offer to help at my sons’ primary schools, not just to be helpful, but so I could see what went on and how my child compared to others when it came to dexterity, attention, behaviour and so on. Helping in class and on trips outside school enabled me to see for myself that the things I had been concerned about were real, not the product of a worried, inexperienced mother.
First, it's a good idea to get a take on your worried from your partner, parent or close friend. They may not have noticed much immediately, but if you go through what you've noticed, they may understand what you're saying. Even if not, still listen to your inner voice. Do some research online using the search facility on this website, check out Contact (they also have a helpline) and lots of other information; it's a brilliant site.
Next, speaking to your child's class teacher should be the first step outside the family to see what they think. Make an appointment though, don't just charge in before or after school and expect them to be in a position to speak to you. Write down your concerns methodically beforehand so you can talk them through.
Your child’s teacher should alert the school’s special needs coordinator (SENCo) and you can ask for a meeting with both of them. Take along your notes, of course. You may wish to ask them to seek external advice from the local authorities' speech and language therapist, or educational psychologist though both of these are in short supply. You can also ask them to call in the local autism outreach assessor, if appropriate. These people can give expert opinions and help the school set up intervention programmes. You may also want to visit your GP with your concerns if you think a paediatrician's appointment could be in order.
If they agree that there is an issue, your child may be put onto the lower level of SEN help called SEND Support. This has a process called "Assess, Plan, Do, Review" which is exactly as it sounds and you can read more about it here and here. This is supposed to be a process that involves the parent, so make sure you remind them about this. You can also read about SEN Support in the SEND Code of Practice, published by the government. Your child's school must also have SEN information on its website.
You should also now be gathering evidence in case your child's progress indicators or behaviours are signs of a learning difficulty or medical condition. You will need these if they do not improve at the lower level of support and a greater level of intervention, in the form of a legally-backed Education, Health and Care Plan is needed.
How do you get the evidence? You will probably end up with mounds of it. Not just your own notes about your concerns, but take notes at every meeting you have with school, therapists, doctors and others. Scan and electronically file or at the least photocopy, every medical report, school report or letter, referral and email. Make notes of phone calls as they happen. Keep a note of interventions tried and their outcome.
Finally, other than SNJ, you can find tons of support on Facebook groups and you should also check out your local authority’s SEND Local Offer (they are of variable quality) and your local SEND Information, Advice and Support Service which is on the website for the Council for Disabled Children
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She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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