SEND reforms: Why working with parents means taking a walk in our shoes.

The new SEND system places an emphasis on teachers working hand in hand with parents as part of “Team My Child”.

However, this may be easier to say than to do. After all, it cannot be easy for an overworked teacher to find time to understand the lives of several stressed out parents of the SEN children in his/her class that s/he now has to work in partnership with, by decree of the Department for Education.

So how can that teacher make us feel a welcome part of the team?

There are plenty examples out there of how NOT to do it. We’ve all read any number of blogs with a variation on the theme of “Ten things never to say to a special needs parent”. Even on SNJ, one of our most popular posts is Debs’ Did you really just say that?

They’re popular for a reason – because it underlines how hard it is for someone – even another parent without a special needs child - to understand what it is like to walk a mile in our shoes before they open their mouths to say something that will make us feel like crap.

What I really need to say is…

So I’d like to say this to the teacher, the (former) friend, the relative or the health professional and even to the stranger in the street: I know you didn’t mean to be insulting, it was just the way it came out. I know you might even have been kicking yourself afterwards when you saw my face fall.

You wouldn’t want to upset me and I get that. You may actually not know WHAT to say or in what tone to say it – you may worry that your attempt at compassion will come out sounding patronising. You may be having a rubbish time yourself and not have the energy to choose your words carefully.

My message to you today is.. Take a walk in my shoes. Just in your imagination, of course. I’m going to give a snapshot of our lives. A brief montage so that when you meet me for that EHCP transfer review meeting or progress report, it’s easier to understand why I’m tetchy, edgy, intense, stressed or even a bit weepy.

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A flick through the photo album of my life

Once, I was just like you – a regular human being. Then I had my child and I became a “Parent of a child with special needs.”

It’s often said that we all either want to fit in or stand out. To be noticed or to just be one of the crowd, like everyone else. I didn’t really have a choice after I had my child.

When my son was really young and newly diagnosed as on the autistic spectrum, I was learning to deal with the kinds of behaviour I would never have imagined seeing in my son. He liked to lick people’s letterboxes, steal balloons from outside shops and, my particular favourite, pick up dried dogs faeces to sniff.

And the meltdowns… I certainly won’t forget those anytime soon. Actually, I can’t, as they’re still quite a regular happening. The most memorable (so far) was the full-on meltdown in a local shop because I wouldn’t buy him a box of multi-coloured pins. The shop was tiny, hot and packed with people.

My son was flat out on the floor oblivious to the scene he was creating. He was spitting at me and kicking out hard with his feet, delivering the odd kick, smack on my shins when his aim was on target.

The other customers in the shop gingerly walked around my son and I or carefully stepped over him (the shop was very small). Only occasionally did I catch anyone’s eye and by that point I didn’t give a stuff what anyone thought of our situation, although I caught a few sympathetic glances in among a couple of hostile stares.

Eventually I managed to get a grasp on my screaming child and escaped with him, vowing never to return.

To many of you reading this, it will be a familiar scene and you will know it wasn’t a one-off. For me however, it was the beginning of a change in my approach to life. I began to develop a thicker skin, to focus only on my current situation and to ignore the looks of others.

This became even more important as my son grew and the looks of sympathy were far more likely to replaced by looks – or words - of hostility and judgment.

As time wore on I became more selective with whom I shared information, so I could avoid hearing useless advice, teeth-gritting pity or seeing a blank look of horror at hearing my latest tale of family life. Some people would assume that because I talked about the difficulties we were encountering that I automatically wanted to discuss their ideas for solutions to the difficulties. I didn’t, I just wanted to share an experience.

On talking to teachers

When my son was in infant school, I was often told by his teachers that, “He doesn’t behave like that here…”

Oh really? I would think, furious at the implication that he was only autistic at home, or that I either couldn’t control my child or was making it all up.

Of course I understood that you would want to tell me how well my child is doing in your environment, how settled and happy he was there. How they follow the routines of the day well, are confident and seem happy. Well, he smiles all day so he must be… right?

But I also know that when you apply discipline to my child, it is in a very specific way that cannot be translated to how he lives at home.

‘We don’t behave like that at school’, or We don’t spit at school’ and another was Year Two boys don’t behave like that”

But my son can’t take environment-specific learning and apply it to another situation, such as at home. His ability to generalise his learning is significantly impaired.

I know you are well intended, I really do!

Don’t get me wrong, I am happy to hear of his successes at school or club or wherever he has been for a few hours. I’m really happy that my child can go into another environment and often hold it together and look like he is complying.

But what for me is so hard to bear is when it seems to be delivered with a slightly pitying tone in your voice, or a slight change in your body language. It might be almost indiscernible to most, but I notice, and I know what it means because I have seen it so many times before. I then feel that my parenting just isn’t good enough. That hurts, it hurts a lot.

I know you probably don’t intend this, haven’t even considered this might be the result, but that’s because you haven’t walked in my shoes.

You are possibly only trying to convey information and are even looking for me to congratulate you on a job well done. And while I am less defensive than I used to be, there is still work to be done and I need to be learn to be less sensitive to nuance.

But this is my little boy, to whom I gave birth, nurtured, watched grow and day by day began to realise that he was not the same as his peers. I have wondered every one of those days… is this my fault?

I already feel bad and I’m tired. Sleep is a luxury in our house most of the time, and even when I do get to lie down, I find myself wondering what I could have done differently that would have helped. ‘What did I miss?’

So, when we meet, how can you make me feel welcome and part of the team – Team MY son?

It’s easy…Strap on my Jimmy Choos (Okay, my trainers) and walk this way...

Think of what I have said and imagine that was you. Really imagine.

And then think about how you would like a teacher to greet you and talk to you about your child. Empathise. Perhaps try, “That must be really difficult.” Or “I’m sorry to hear that.” Or, best of all, “Let’s work together so we can try to make life a bit better?”

Preconceived ideas of what works for children with autism, or focusing on just one potential solution aren’t the way forward unless you are thinking of my son as an individual and not as a problem that you need to solve.

However, offering a range of ideas, something like ‘That sounds tough, how can we can support you?’ or understanding that sometimes we don’t need anything more than to be heard. I know you’re not my therapist but if we are to work together, understanding our experience is a great start.

I once suggested a buddy scheme for the SEN class my son was in with parents of children in an older year group offering support for children entering the school, such as a coffee afternoon or similar, but this was not carried forward. I thought of this because I had walked in the other parents’ shoes and I knew what it felt like to feel alone and not know where to turn for support or advice. What I had learned in those two years since had been invaluable but had taken a lot of time and effort and heartache and I could have shared my knowledge to save a new parent going through the same thing.

Giving the idea a go would have shown that the school understood the issues faced by new parents and wanted to help overcome them.

So, please, walk in my shoes so that we can step forward together to help my son be the best that he can be.

Have you developed a good working relationship with a teacher or, if you're a teacher, with a parent? Share your knowledge and ideas in the comments so we can spread what you know works well.

Angela Kelly
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  1. Vague

    Well, it has taken a letter to get the school to work with me. I have had two “pathway plans” delivered to me, fait accomplis. The targets of the first were not reached, and the targets of the second were therefore lower targets. Example, the first one had a target to complete all her work in all her lessons. Now the target is more like at least do some work! She throws books, hides under tables, walks out of lessons….There does not appear to be a visual timetable for her anywhere in sight, despite my suggestions, and I wonder if they really know what one is. Just getting her into school is hard work, but I see that as a sign that things are not right for her. When she is genuinely happy and settled in school, she will go in just fine, because she won’t panic at the thought of it any more. They are trying, they mean well. The head has even been on a (one day) ASD training course, so has a teeny, tiny idea of it. But they don’t get it, and still say stupid things.

    Oh, as for shops, my worst one was dragging (literally) a screaming, kicking, biting child all the way through the shopping centre in Woking. From the back of Toys’r’us all the way to the car park. The only person who approached us did so to give me her shoes, which had fallen off. He seemed a little disapproving. Staggering, really….

      1. Vague

        As far as I know, my local authority is using the term “Pathway Plan” as a replacement for an IEP. That is what it appears to be, from p[revious experience with my other ASD child. The school are currently looking at calling in outside agencies, starting with Behaviour support. However, I am sure they are well versed in fobbing off, but I also feel, having looked at the information, that Surrey has raised their criteria for what qualifies children for an EHCP. Since their criteria are not actually anything to do with the legislation (and indeed their previous criteria were not in line with the then legislation), I shall ignore it. My daughter ultimately needs to be in a specialist environment, and I will be applying for a Statutory Assessment in the near future if school shows no signs of doing so and if they show any signs of trying to fob me off. We have a meeting after Easter and I will move forward after that, if necessary without the school’s support. I want an EHCP in place by the beginning of yr 5 at the latest, so assuming at least 2 appeals, I will get started in September. Currently my son is being moved from a Statement to an EHCP, and I may have to fight over that, so one battle at time. I don’t have a barrister on staff the way Surrey does.

        Currently I have a fight every morning to get my daughter into school, literally being kicked, bitten and scratched every step of the way. Until my daughter is in the right place, this will not stop. It is a panic attack. School say she is “fine” when she is there, but that is far from being the case, ort there would be some work in her books instead of a lot of pages with only a date, sometimes a heading, but no actual work. Clearly they are not meeting her needs, and there is no way they can unless they get in a highly trained and experienced 1-1 and find a suitable space in which she can work. She needs OT and SaLT assessments as well, and a proper EP assessment. I shouldn’t imagine the school asking “behaviour support” for advice is going to produce anything the least bit useful. Several times I have taken her in either naked or in pyjamas, wrapped in a blanket. In any other situation I would be accused of child abuse, but since it is for getting her into school it seems that torturing her on a daily basis is just fine.

        Can you tell I have been bottling up my rage a bit? Sorry. But no, as far as I know this is the new IEP, not a proxy for an EHCP.

    1. elucidation_inc

      If by Pathway Plans you mean a One Page Profile then this shouldhave been done by co-planning with you. Targets which are medicalised such as you have stated are meaningless for your INDIVIDUAL child. I would’ve strongly suggest if your child has a statement and has not yet transferred to EHCP you ask for the annual review to be brought forward and when you are asked who you want to attend get someone from the LA and talk about how her needs are NOT being met. How do the school use the funding and where are examples of reasonable adjustments being made in the school to meet her needs! Good luck.

  2. Nicky

    This is really helpful, thank you! I work with children who have SEN, and even when they have had a good day, I always say (when parents think a good day means they are obviously bad parents). “this is how it often is. They cope in school ok, but let it go when they get home, because they are safe to do that there”. How do I know? My son has mild ASD. Actually, I feel bad because it is mild. I don’t fit into either group properly. And he certainly doesn’t exhibit the more extreme traits (all the time…). So yeah, I felt like a really rubbish parent at times, when I was tearing my hair out (or he was doing that for me), at home, and in school pretty much ok. So I can say with confidence to those parents, “you are doing a grand job, it isn’t easy. I get to go home at the end of the day, you are doing it all the time, so don’t feel bad about yourself. If your daughter does have a wobble, I have got other people to back me up. You are doing a brilliant job, and the fact she ‘copes’ in school is a testament to that. I am simply privelledged to work with you, supporting your child.” (The quote marks on cope are because I know that actually sometimes, the child holds all the anxiety inside and then gets home and let’s rip over something very little like “pick your bag up” because, “you don’t care that I have had a bad day at school” because he cannot explain that to me before he explodes over something else). Thank you for sharing.
    Tonight I am deciding on the pros and cons of putting peas into dinner. He might be ‘okay’ and simply pick them out, or we might have a meltdown.

    Apologies if that is all poorly phrased. I think as you say, the key is partnership. I know the parent is the expert on their child. And that all children are individuals. What works for one, doesn’t for another. The key is seeing the world from the child’s point of view.

    1. Angela Watts Kelly

      Hi Nicky thanks for your comments. It’s so great to read how you can share the highs and lows with parents and from my experience it means so much. I hope the peas weren’t too traumatic..

  3. Romany

    Partnership is key. More and more I hope to see parents as part of ‘professionals’ training workshops. I’ve done a couple (as a parent of two asd / adhd teenagers) and you can see people’s eyes widen and their understanding of what it is like to walk through the playground whilst the ‘red sea’ of parents parts before ye…
    Had a small victory recently. It’s about ‘the letters’. In so many parent groups, we’ve had the conversation of what it is like to receive ‘the letters’. ‘the letters’ are the statutory letters you get from a school formally informing you of some ghastly misdeed your child has done. This is after you’ve talked to someone on the phone, had a (hopefully) perfectly pleasant conversation about the ghastly misdeed (offered to pay for the damage if applicable) and thought that was that. There’ll be a consequence, a sanction… but we’ve worked through the ghastly misdeed and agreed steps forward. Then you get ‘the letter’ written in admin speak and cold. Every time… it’s like being punched – again! I’ve spoken to parents who have a fabulous origami habit, others have a spike in their kitchen, some make aeroplanes.
    So, what’s the small victory? I went to see the Headteacher of my son’s secondary school and explained the above – in much the same terms. The Headteacher explained the need for ‘the letters’ and acknowledged the affect they could have. So… now there is a phone call in place, from the school to the parent, that ‘the letter’ is coming and that the parent should expect it, and if necessary ignore it! This doesn’t apply to all parents, as there are some who do not have children with SEN, and the impact for those families will be, and possibly should be, different.
    Still, at least being warned about ‘the letter’ is more humane that it just arriving unannounced.

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