Why take the barriers down?

For 9 consecutive years I gave up 8 full days at Christmas to volunteer at a shelter for homeless people. ‘Gave up’ is a commonly used term for such apparent altruistic behaviours but the truth is, as for most people, my behaviours were reinforced by the rewards I reaped from being part of an project that seemed to really make a difference to a group I genuinely cared about.

I chose the same shifts each year. 3pm until 11pm. The action shift. The drinking shift. The dinner shift. The awake shift. The quarrelling shift. The A&E shift, at times. After a couple of years, I progressed to take on more responsibilities during the week. A ‘Key’ volunteer, with a radio, who was called to either help with a difficult situation directly, or divert likely causes that might escalate, and help ensure that volunteers and other ‘guests’ were kept safe.

There were other strategies for this. Metal ‘event’ barriers could be seen distributed throughout the shelter and volunteers were posted in groups on various exists and entrances areas, as security. Guests were searched upon arrival and items considered potentially dangerous were confiscated. However, I was lucky enough to have the opportunity to follow the lead of someone who wanted to change things.

His view was that the barriers, security and searching contributed to the number of incidents. He suggested it enabled the people who used the shelters to abdicate a level of responsibility for their own behaviours. He spoke of the creation of a ‘them and us’ attitude where we were all in fact, on the same side, wanting solutions to the problems these vulnerable people faced. His views were not popular, at the start.

Over the following 7 years that I volunteered he would direct, upon the start of the shift, the barriers being taken down. He insisted guests were served their dinner at a table by the volunteers, respectfully, and not made to queue or bow their heads at a servery to have their basic needs met. He changed the radios from the handheld ‘security look’ to discrete ear-pieces. However, at each new shift we would find the barriers had been put back up by the previous shifts and guests had been queuing for their other meals.

The leap of faith I had taken in his leadership paid off. Over those years, the number of incidences did indeed drop significantly, the ‘them and us’ feel to the shelter became less apparent and the trusting relationships that developed enabled more vulnerable people to access services they may have been unwilling to before. The other shifts, full of equally caring and committed volunteers, changed their practice to copy ours. The guests were no longer searched on arrival. These changes had no cost to implement but significant tangible benefits for not just the guests but the volunteers as well.

I stopped volunteering when I became pregnant with my first child, who was later diagnosed with classic autism at 2yrs 3 months. It was then my turn to experience what it was like to be kept behind a barrier for the protection of those there to help. It was when I learned that I needed to bow to a servery to have my and my child’s basic needs met. It was when I learned that people had overt communication systems they would use to attempt to keep the peace at the expense of our relationship. It was when I learned I must now always wait in line as the things that are most important to me are controlled by someone else.

As is the case for many parents of a child with SEND, I have sadly had plenty of cause to be disruptive and challenging. These barriers I describe are effective for the mostly very good people who control the system, as they were in the example I gave of the shelter, but what if they could be removed? What if we gave parents more responsibility for their behaviours by taking them down? What if relationships were more important than policy? What if access was given to the currently guarded entrances? What then? Who could possibly benefit?

As a parent of a child with SEND I and other SEND parents have about as much power to implement such a suggestion as one of our vulnerable homeless people would have had. If we are to see change such as this is HAS to come from teachers and those who work in Education. Who is willing to take it on?






There is nothing like having a child with SEN to acutely contrast lightness and darkness. I’m no Robbie Williams. I can’t write lyrics and I don’t have much talent for words. I tend to sell this as having a preference for plain English which usually lets me off the hook. But I have been struggling to express something for quite some time and I just don’t think plain English will cut it, so I’m going to challenge myself now and have a go.

In the UK, being a parent of a child with a disability means you are forced on a journey. This is not the journey of acceptance, which though tough, is shortened by the much bigger journey to ensure your child has the services and provision that will enable them to reach somewhere near the level of their potential. The journey is a long one and will change your life. It won’t necessarily make it better, or you a better person, and for many, it will last for the rest of their lives.

During the journey there is incredible despair and desperation. Just surviving it can cost you your savings, your home, your job, your pension, and though I have escaped this one so far, your marriage. You can be caught up in a web of systems that are not compatible with each other and though often created with good intentions had no oversight and no engineer. In addition, there will by mythical provisions you are believed to be accessing because they existed once, in a pilot study, 45 miles away, 5 years ago.

You will be expected to accept these ineffective good intentions and mythical provisions gratefully. Not doing so will put you in receipt of emotive communications that come with the expectation you will display guilt and cease all challenge or face a consequence. Money will move around in your child’s name that you will never see or even know about. You will face the devil.

But there are Angels too.

I often take some time out to go through them in my head, ones I know now and those of the past who have spurred us on. They can touch your life with a helpful piece of information, advice, unexpected praise or simply kindness. Some of them will take great risks themselves to aid you and those on your journey without expectation of pay-back and some will simply retweet or comment on a post that is important to you.

Many of them show you that they are willing to fight so that others behind you see much less of the devil, or so you may see less in the future. They shine a light on your words, listen to and believe your stories of darkness so they may be brighter still. I have seen them. I have met them. I know this to be true.

This week the light has shone particularly brightly for me. I have been lucky enough to have seen a number of Angels at work. Some with little recognition, some with great recognition. I believe that regardless of the darkness or the outcomes of their battles, whilst their work and their passion shine through, there will always be light.


Thy Meetings Come

Today I had a twitter exchange with a couple of tweeters I have come to respect for their passion and contribution to Early Years Education. They told me that they were valued by the schools they support and that their provision was good and I have no reason to doubt that from what I have witnessed them discuss.

But the discussion brought back memories of my experience of Early Years Education. The mismatch between what these posters believe they are delivering and what I felt my son received was stark. In short, I felt we received a generic patronising service from the services that purported to deliver essential ‘early intervention’.

8 months after my son was diagnosed with ASD and at 3 and a half yrs of age, (after an extremely tough battled for a statement of SEN), we had weekly SALT, weekly Autism Advisory Service, an EP assessment, and 80% of 1:1 in preschool. I have since learned that this kind of provision is but a dream for many, and yet in what I can only recall as the darkest of days of a true understanding of what ‘support’ actually entailed, I wrote this:

‘Our LA, the Armageddon,
Shallow be thy name
Thy meetings come, nowt will be done
Except CPD on expenses in Devon
Give us this day our daily dread
And forgive us our PECSesses, as we forgive those who laminate against us
Lead us not into visual timetables
And deliver us from unmeasurable targets
For thine is the budget, the power, and you’ll surely
Fail my child again and again.’

To read this back made me cry. It’s not that I didn’t want to be grateful in those early years. It’s that I just couldn’t be. You see, nobody could explain to me one single outcome that resulted from their involvement and I asked, at the first and last ‘Team Around the Child’ Meeting.

The professionals metaphorically held hands, and despite having the question 3 weeks in advance, announced that they had agreed amongst themselves that outcomes were a joint effort. But sadly, no-one could give me even a joint-effort outcome either, at least not a measurable one, or even a vague one I could agree I had witnessed.

The question I put to them is no doubt a question of a ‘nightmare’ parent. But even so, should not the professionals (paid for at quite considerable expense to the tax-payer) be able to answer it?

Not being able to answer this, offered us absolutely no hope for our child’s future, or for the ability of services to meet his needs.

Building bridges with disengaged teachers

tunnel miss

On Thursday I read this article by Tracy Townrow on ‘Building bridges with disengaged parents’. It was a good article but it made me uncomfortable nonetheless and highlighted me the very real power differences between the two key agencies that are supposed to be working in partnership for the best interests of the child. It reminded me very much of the Channel Tunnel memes that were circulated during its development where the French and the English sides had worked hard on the tunnel from their perspective ends, but completely missed each other.  In response, I wrote the following:

I work as an unpaid carer for a child with Autism, who attends an ASD resource in an Outer London Primary school. At age 9, this is his 8th Educational Placement. I am often asked, how I engaged with teachers through such challenging circumstances.

It’s a common question, and one that needs greater focus, because so much of a child’s education is affected by their school situation.

Ensuring an appropriate environment is a concern for a lot of parents, as is attitude and experience of the type of inclusion that sees children with SEN as equal amongst their peers. Incidences of bullying and projected rational for behaviours by staff as well as unofficial exclusions have a massive impact on a child’s ability to concentrate in class.To make things harder, many teachers were not taught to be teachers of SEN and have a lack of confidence in their ability, and some feel it should not be within their remit.

Parents often find that when they do try to help, they are met with; ‘Leave it to us, we’re the experts’. I find that respect, understanding, patience, caring and listening are often inadequate methods to win teachers’ trust. But even so, here are some of the strategies I have used:

Meet and greet in the mornings
Most mornings smile at the people you are handing over your child to, in an attempt to build a relationship in a non-threatening way. Try to get to know the names of the teachers and chat informally to establish a common ground. Once familiar with seeing you, some teachers will build up the courage to approach you to ask about strategies for your child or get some advice. Most won’t.

School visits
Always attend IEP meetings (if offered. If not, request one but expect to be refused). This shows that you consider yourself a partner in your child’s education. If a teacher raises an issue, ask them what solutions they have tried or are attempting. Allow them to talk freely. If they have no strategies, thank them for their honesty, offer to think about it and get back to them or suggest that it might be sensible to get input from an outside agency.

It is important that actions are agreed on both sides. Your role as guardian with legal responsibility for your child’s wellbeing and education, is to ensure schools follow through with these.

During the visit try to get as much information as the teacher is willing to share: this means using open-ended questions about the topics you have agreed to discuss. For example, when discussing attendance, your opening could be: “We’ve agreed that Bob’s attendance has slipped recently. Let’s see if we can work out together what might be causing this. Talk me through the class morning routine?” This requires more than just a yes or no answer, and allows the teacher to share likely stress or behaviour triggers.

Experience has taught me though, that teachers will rarely open up about much more serious issues once you have shown you are willing to help with something more minor. But it is a good start and worth trying all the same.

Prove you are not a threat
What do you do when they don’t communicate with you, or tell you they can’t make a meeting, or don’t need your help? Well you can try patience and persistence but if teachers try to put you off either by avoiding you or telling you they don’t need help, then it is no good seeking them out in the playground and sharing positive information about your child’s progress over several days. You will be accused of harassment. The truth is you are a threat to their time and their budget in a way other families are not.

Agree on a plan and stick to it
Once it is clear what needs to change, it is important that actions are agreed on both sides. Your role is to ensure schools follow through with these and to challenge them if they don’t. Gentle encouragement can work – but most of the time you will need to take a firm stand, with written reminders. Do not give these daily or you will be accused of being vexatious and communications will be cut off. If there are attendance issues, you can remind the teacher that you are looking forward to their implementation of the agreed strategies and speak to them at the end of the day. If this doesn’t have the desired effect you cannot contact the teacher in any way half an hour before as you will not have any direct contact details for them. If you involve other services to make sure school gets the right support, don’t expect the school to automatically follow the expert advice or allow you to accompany the expert on the first visit.

Top Trumps and Heads Up
Generally, you will have absolutely no idea whether your child is being worked with one-on-one for provision their statement or EHCP binds the school to. They will have policies, written and unwritten that make difficult for the teacher to go against such as ‘We believe one-to-one stifles independence’. If your child has social communication difficulties they will be unable to tell you about this and as such they are at a huge and unequal disadvantage compared to their peers when it comes to parental advocacy. Use of resources can help a little with this. The card game Top Trumps is a favourite and while playing you can talk to the child about any issues affecting them and how they’re getting on. Because the focus is on the game and not their language difficulties, children feel much more relaxed and are less anxious about their language performance.

Keep logs and records
Information recording is key so that every communication or promise that is made about your child to you is recorded, with date, time and with the name of the person who communicated. Ideally, a follow-up thank you email (if you are allowed the address. Most primaries do not give this to parents.) or letter to clarify what has been promised or agreed, helps schools to stay focussed. If you have any concerns or queries, these are also better done in writing, and all meetings should have minutes that you have signed as an accurate record.

Offer children a safe place
Offer your child regular protected opportunities to feedback to you about their experiences at school. This is a safe time where vulnerable children or children who may have experienced traumatic situations at school can get a bit of nurturing. You can start by sitting at the table, colouring in different pictures while chatting about our likes or dislikes, maybe what we did at the weekend. While chatting sometimes a child will make a disclosure. There is absolutely no point in raising this with the child protection officer if your child has SEN or communication difficulties. It is also true that what might be termed as abusive for a child without SEN, just isn’t considered in the same way for children with SEN. You have no choice but to consider removing your child from the school and finding an alternative placement or to Home Educate.


I am lucky to have met some truly excellent professionals during our journey to what is currently, in my opinion, outstanding ASD provision. Those who accept inreach from  parents as well as offering outreach, who do give out their personal phone numbers and email addresses and who have a genuine open-door policy and an expectation that families take ultimate responsibility for the education of their children and provide the information and communication for them to do so.

Anyone who reads this might protest ‘but we mean disengaged parents, not parents like you who clearly aren’t’. Well we have been disengaged, and to the extent that we left the school system entirely. What won us back wasn’t professionals telling us what was good for us, but professionals who listened genuinely to what we told them was good for us and who compromised to try to deliver that. We compromised too, of course!



Driving to Oxbridge

I took my Driving Theory Test today. I passed. I started learning the syllabus last night. It would have been pointless learning it any earlier as the subject matter has no context for me, as yet a non-driver.

I do not know what a breakaway cable is but I do know to attach it if I ever tow a caravan. I do not know what aquaplaning is but know to steer into it, (though having never actually steered I do not know how to do this). It doesn’t matter. I got 100%. Clearly I am Oxbridge material.

So successful has this way of ‘learning’ been for me, I am thinking of starting a campaign to reform the driving education system and then set up a competitive practical driving school where you are drilled by a computer and then tested in a mock car. Who is with me?

Incidentally, I have also learned that if your mobile phone goes off whilst you are driving you must stop in a safe place to answer it. Ignoring it is simply not an option.



Children are not dogs

Yesterday I taught Kipper (Age 9 with a dx of ASD) to knit. Can dogs knit?

Kipper has been asking me to teach him for a long time, but I myself cannot knit.  He asked me to use the chicken-shaped dog clicker I purchased after a friend suggested it might help when I struggled to teach him cursive handwriting after deregistering him from a Special School (that also struggled and had informed me he would probably never write fluently and would need a computer or scribe).

The early Home Education days were hard. I spent a lot of time frustrated but trying to patiently explain how to hold the pencil, reminding him not to slip back into the thumb-wrap hold and form his letters with accuracy:

‘no, not like that, move your finger up, Daddy finger sits next to Mummy finger, not on top of her, keep your circles round, make sure your sticks come all the way to the line like I’ve told you, why is the bottom curve way below the line now, watch that thumb…….’

Way too much language for a child with ASD and most of it negative.

Introducing the clicker cut out language completely and gave very clear positive feedback of broken down steps that were built upon. At first Kipper worked for the extrinsic positive feedback of the clicker. In fact, as it had been such a negative experience up until then I had to provide further extrinsic motivation in the form of ipad minutes, just to get him to attempt handwriting again (let’s face it no-one is going to choose to write a page of ‘a’s for its intrinsic reward), but as steps were achieved and success became incremental, he worked hard for himself and the clicker became merely a guide. We then worked on fluency and accuracy together by charting, and ‘beating our time’ and now he is back in school he continues to produce beautiful fluent cursive writing simply to please himself and his teacher (intrinsically or extrinsically rewarding?). And yes, we have also taught him to type too.

So knitting. We watched several YouTube videos together. Kipper seemed to grasp how to do it, but simply could not replicate it himself. His solution was for me to do it, with him using the clicker to mark when I got it right. We did this for some time. Then we swapped and I clicked him, using 4 clicks for the basic moves, and refining and becoming more picky in what was clicked to establish better practice. He grasped it in less than 10 minutes. Neither his ASD or expressive language disorder proved to be a barrier to his learning in this way.

But here’s the thing. Clicker use for children with ASD, is generally frowned upon in education. In fact behavioural techniques are considered unethical, manipulative, normalising,  despite the fact that they are used routinely for typically developing children when reinforcing ‘wanted behaviour’ in school (stickers, HT awards, attendance assemblies, climbing/descending pegs).

And yet it was my son who requested the clicker was used, and it was he who wanted to learn how to knit (it absolutely wasn’t my idea, I hate all things crafty).  He was impatient to learn well and learn fast.

If I was ‘normalising him’ or training him to conform through dog training techniques, then you can be sure that knitting would not be the first thing that occurred to me to teach a 9yr old boy with ASD who cannot tie his shoelaces.

Ethical decisions in education are surely much more to do with ‘what?’ is taught and ‘why?’ (i.e. should valuable teaching hours be used teaching for the SPAG test? or should I have persisted with handwriting at all?) The ‘how?’ ought to simply be about efficiency and effectiveness (i.e. is the this the most effective use of a learners limited time, for them, and can they learn faster with improved techniques?). It appears to me that in the current education debate, the ‘what?/why?’ and the ‘how?’ are switched.