The Key to the Door of the Labyrinth

This morning I was lucky to be able to attend a multidisciplinary workshop on the planning of diagnostic services for children with Neurodevelopmental Disabilities. I say ‘lucky’ because it was a 9am start which for many parents is impossible, but I was also lucky to live in an area whose key agencies, were welcoming of parents on such a topic and lucky that there is a PCF who are active in pursuing that welcome.

Image result for labyrinth

In attendance were senior health professionals, representation from local parent groups including @SENDFamilyVoice, @expresscic, and @AdhdRichmond and at least 3 Educational Psychologists. It was sad however to only have one teaching professional present.

Ken Wong, Clinical Manager across 5 Boroughs, presented an impressive picture of how referral times for diagnostic services had been reduced drastically and praised to an extent the pre-diagnostic triaging services. I did point out that focussing on reduction of referral times whilst forcing a pre-referral dance that for us has taken two years ought to be considered as part of this picture but a couple of professionals felt it was necessary to point out that this was what we were there to discuss. An ironic way of shutting down discussion.

The workshop moved on and a suggestion made that children with mild autism and severe autism require different interventions but if you are delivering high quality individualised data-driven evidence-based practice I’m not entirely sure why. However, the suggestions later that some children would be okay in mainstream with the right intervention gave the impression that Health do not understand that ALL children are required to be by law, if their parents choose it. But then one of the main themes from the group feedback was lack of communication and shared knowledge across teams within health and also with education. This frustration was shared equally by the professionals present and the parents but there was no indication of who or what was a barrier to this lack of cross agency information sharing. Funding, as always, was mentioned.

@AdhdRichmond presented an impressive summary of a solution developed by @ADHDFoundation however, which demonstrated not only the potential to meet needs locally and through co-production but in a way that could be self-supporting and raise funds. There was some excitement about the potential of this and there were discussions around creating local hubs of expertise pooling resources from both ASD and ADHD services. This model though has been asked for by @expresscic for a number of years though to no avail so it will need a real push and demonstration of support to become realised.

diagnosis doesn’t produce a golden ticket

There were many other presentations on some of the things professionals had been trying to do to improve services and confidence in families and it was clear there is a real desire to make changes for the better. Pilots and research was presented on things that were working well and suggestions for future direction to reduce waiting times and signpost to resources. There was a real recognition that diagnosis doesn’t produce a golden ticket to support but more like a key to the door of a labyrinth and there was some consideration of how pathways could be made less confusing.

It was concerning however to hear it suggested that both Educational Psychologists and Health Practitioners ought not to make recommendations for children of services that do not exist in some places (such as Occupational Therapy) as these raised expectations of parents and caused problems for professionals on the frontline. Surely the development of these services locally is entirely dependent on the evidence through these reports that they are required? And without such evidence parents are having their voice and their opportunity for coproduction in terms of the Local Offer removed. A strong parent voice enables those in positions of influence to better justify their demands for prioritising the funding for these services.

Overall it was a positive workshop. And there will be another. Already the organisers have listened to feedback about start times and promised a later start for families in future. This is an outcome and a good start. The attitude towards parents and families was respectful and welcoming and I would encourage the new voices of parents who are not affiliated to any organisation to attend and share their experiences and views. I would also suggest that ‘working together’ begin immediately and not wait until the end of the process, so that more educational professionals, particularly those on the frontline are aware of the workshop and facilitated to attend.

 

 

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Autism in Venice – and Education

I post a lot about the successes and achievements of Kipper, now age 10. Many of which Kipper’s Dad and I have taken most of the responsibility for, until recently, when we now include his school. This blog is different. This is where I give a snap-shot of two hours taken from a trip of a lifetime and the impact autism can have.

Let me start by setting the context and flagging my proud moments. We are on a road-trip in Europe. Kipper helped plan some of it, has had to cope with different bedroom arrangements, smells, noises, social expectations and cultures. He is on his own mission to eat as many different foods as he can. This is the kind of thing I post about. It has been hard work for all of us to enable him to manage and enjoy this level of flexibility. I am immensely proud of our and his achievements with this and the input from his ASD unit in his mainstream school.

The two hours I want to post about start on the way out of The Dukes House in Venice. Kipper’s sister, aged 8, and brother age 5 listened to aged-modified descriptions of the rooms. Kipper could repeat back if challenged to, but mostly he held the guidebook in outstretched hands and ‘drove’ from room to room getting cross when we asked him to keep down the noises he made for the sake of other tourists. We had to apologise a few times to those he got too close to.

Many interactions during those two hours had to include something about bananas. He would say the same sentence frequently. ‘Can you eat green bananas?’ and no matter how differently we answered him, the same question was repeated often. We would point to a clock for example, to show the interesting feature of a planet and he would look, nodding, repeat back and respond with, ‘Can we grow a banana tree in our garden?! Five minutes later when we asked him a question about the clock (that we had spent a good few minutes making sure he had processed and understood), he couldn’t even remember it. He gave a good performance of learning but had actually heard nothing, except, perhaps his own thoughts about bananas.

Despite the fact that his siblings were interested in learning about the Venetian Duke, I am not suggesting that Kipper must too, as this was very much an adult-led agenda. But if he is to learn in a state Secondary School, he will need to have either the skills or the support to be able to learn when it is adult-led like this. As we go through his EHCP transfer for Secondary this year,  I expect to be told soon that Kipper will need to learn how to learn independently without adult support and that he must not become dependent on one support assistant. I agree, but if I can’t get him to learn one small piece of information about a clock as a parent giving 1:1 support with a string of training courses and experience, then I am highly sceptical of the Local Authority preferred model of a several class teachers with several shared TAs being the solution to Kippers learning difficulties.

Independent Learning is a skill Kipper needs to learn through active specific teaching, with targets and measures of success and progress. It is NOT a skill he will learn through abandonment. Abandoned, he may learn all there is to know about banana plantations perhaps, and that may be useful, but he’ll never be able to write about them, or put them in historical context or get the other skills required for a job that involves them.

As we leave the Palace, Kipper mutters to himself ‘black black yellow’, black yellow, dark yellow, yellow, light green’ etc, as he categorises several colour stages a banana must go backwards over time.

Image result for green bananas

Walking along the Grand Canal we passed a park and Kipper pestered to go into. We tell him we’d like to see more of the Canal but when he makes loud ‘Grrrr’ noises and stamps his feet, his Dad allows him in for 5 minutes and tells him we’ll wait outside. We are confident he will not get lost as his navigation skills are good and so is his time-keeping. He comes stomping out. There are no banana trees in this park. We point out to him and his siblings, the bridges and the boats but he starts a conversation about wanting to stay up until midnight and go for a walk to hear crickets. This has been a daily theme too.

Stopping at a shop with postcards, Kipper asks to buy one. We give him enough money for a card and a stamp and he makes a successful transaction independently, able to use Euros, check the change and wait for a receipt. For the next 20 minute he walks oblivious to the sights around him, happily stamping and chanting all of the numbers on the receipt in the order in which they occur. He stops to wrap the receipt around an interesting curved handrail of a bridge and moves it backwards and forwards refusing to move on before he had completed the full bridge in this way. His younger brother took an interest and they made up a song together to accompany the movement using Kipper’s verbals stims ‘Bubb, bubb, bubb, bubb!’ He explains to his little brother that it is the Italian accent of the postcard shop-keeper.

We stopped at a water fountain to fill up our water bottles. Kipper undid his lid, filled up his bottle (both unscrewing tops and coping with the sensory experience of water spillage have been big challenges he has overcome) but then could not find lid anywhere. Asking where it was, was met with ‘How much do bananas cost in Africa? Can you get a whole bunch for 14p? As parents it is frustrating. We need to find the lid. We need him to be motivated to find the lid or at least not lose it. His future is at risk without these types of skills and attention. He continues the walk in a jerky fashion, pretending to be on the first 3 seconds of a 0-100 rollercoaster, causing people to startle and jump out of his way.

To give ourselves some respite from the crowds, their stares and intolerances we headed off the beaten track and down some of the narrow streets when there are fewer people. Here we are treated to the perfected palmas clapping, as kipper explores the different echoes of the streets. Romantic couples who are out for a peaceful walk give us dirty looks. I get a headache.

We reach a busy square and Kipper suddenly jumps, stretches out and then falls to the floor. I ask him why he did it but he refused to answer. Later he explains that he wanted to lie down a bit in sun and a bit in shade to see if the stones felt different temperatures. He couldn’t lie down in such a place though if he wasn’t tired apparently, so he had to yawn first and then fall to the ground.

Image result for parachute off zugspitze

A few minutes later he was talking to his sister. They both jump off a high step together and pretended they were skydiving. The next 10 minutes he is engaged in discussion about what he can see on the ground as if he were flying over a mountain range with a parachute. He and his sister pretend to communicate by radio. In their shared imagination, they’d jumped off the Zugspitze, the highest mountain in Germany which they’d seen in real life a few days before. His younger brother is following a pigeon with his arm held out pretending to walk it. For that 10mins we feel like a ‘normal’ family. All three children were then involved in ‘acceptable’ non-engaged activities.

We had to walk through an outside bar in a VERY narrow street which meant lots of cigarettes sticking out of unaware hands at a level unsafe for the children. I call the kids together to explain the danger. I had to say Kipper’s name 6 times to get him to respond, and then repeat a further 3 times the information I wanted him to have. He was still, in his head, in the air with a parachute. And then we are back to the clapping.

Quiet clapping this time with one hand above the other and elbows out, and always done within in inches of another person, chosen for proximity and not discriminated by whether or not they are known to Kipper. It’s a habit/stim that winds me up. It is irritating as his mum, but my fear is that it puts him in easy range of being hit. In my head I start to plan an intervention to stop it, but I’m too tired to think.

Image result for Pigeons in Venice Italy

When we return back to our rented flat he wants to show us the photos on his camera.  Picture after picture after picture of pigeons. He explains fat ones, thin ones, ugly ones, dwarf ones, discoloured ones and labels them all with different personal attributes he has learned never to direct at people. No towers. No boats. No bridges. Just pigeons. We have a discussion about homing pigeons and he seems interested. We try to support his interests as we notice them despite slight disappointment about what he has taken from the trip. In hindsight, we got it wrong though. He wasn’t interested in pigeons but in the personal attributes he has been drilled never to direct at people due to their social consequence.

The pigeons were a clever way for him to explore a topic he was interested in, which when you’re tired, and have spent a fortune and substantial energy on trying to give your child an experience of a lifetime, is hard to accept even when you understand. How will Secondary School teachers who only see him for an hour twice a week manage?

We explain that communication technology has moved on now and ask him to suggest what we now use. A ridiculous question to ask given his rigid thinking. Again, if we are making such fundamental mistakes how will his Secondary school teachers get it right? He was quick with his reply. ‘Parrots?!’

 

The grateful SEND Parent and a cup of tea.

Jacksons of Piccadilly - 12 Compartment Box Filled (Image 3)

I wrote this for Whole School Send.

Yesterday I learned that my 10yr old autistic son, who attends an ASD resource base in a primary mainstream school, has been selected to be next year’s Leader of the School Orchestra. This is wonderful news for his confidence and self-esteem; it’s wonderful for us as his proud parents, too; and it’s a true testament to the inclusive nature of the school he attends. When I first heard the news from his teacher, I was in tears. Many parents would cry tears of joy at such news; however, parents of children with SEND would more likely cry tears of gratitude, as I did.

Why be grateful though? I know he has the talent for it. I know he has the skills for it. I know he has the commitment and I know he deserves the honour. What he doesn’t have, however, is reliability, or punctuality. His orchestra rehearsals begin at 8:30am and as a consequence of the lack of local provision, he is entirely dependent on Local Authority transport to get him to the nearest school that is properly resourced for ASD. His transport, however, is only required to get him to school for the start of the school day, at 8:50am. Thus, he arrives late for every single rehearsal, disrupting the teacher, disrupting the children and, for a child with ASD, placing a high demand on him to transition and to ‘slot in’ to a lesson that has already started.

That the school are willing to overlook these things and still promote him says wonderful things about the school, their understanding of how to make zero cost reasonable adjustments and their understanding that life chances can be improved from such extra-curricular opportunities.

However, is this reasonable adjustment required because of his disability? No. His ASD doesn’t make him unreliable or unpunctual; in fact, it does the reverse. In fact, this reasonable adjustment is only required because of other failings in the SEND system. The school staff showed such flexibility but will they understand the difference? Will they have thought about it?

I’m uncertain. In reality, my gratitude and recognition of what they have done prevents me from making any further demands of them or advocating for my son on an issue that is actually to do with his disability. Why, then, do I not raise my concerns with the Local Authority Transport department given that, through no fault
of their own, children with SEND are being excluded from participation in before- and after-school activities as well as community events. Again, that is down to gratitude.

Having experienced inconsistency in timings, drivers and escorts; and having gone through the complaints process countless times, when you finally get something that doesn’t leave your child distressed to leave the house you become grateful for the inflexible but just-about-working arrangements. Yet, for inclusion to work in society, it’s essential that these children and families be facilitated to participate on a par with others. This means being active and seen in their local communities but also active and seen at professional and policy events.

On 14th June Achievement for All held a conference titled ‘Every Child Included’. It was held at Newbury Race course and the content included a wide range of talks and perspectives and did include parent voice. However, the price to attend was prohibitive for parents, and parents, as a group, were not listed as expected delegates, and yet we know that parent engagement and involvement in their children’s education is fundamental if outcomes are to improve.

When I raised this with Sonia Blandford, CEO and Founder of Achievement for All, it took less than an hour to receive an offer of free tickets for any parents to attend who wanted to; within 24 hours, the website had been updated to reflect this and to express the value of parent voice. This was impressive action and demonstrates that the will is there, if we can just challenge gently and raise issues that may simply not have been considered.  Attending the ‘Every Child Included’ Conference, gave an opportunity to me and other parents to raise questions from different perspectives and to have informal chats with stallholders about parent engagement and voice.

Nevertheless, the parents who attended were likely to be the only people there who were not paid for that day, who had to juggle complex childcare arrangements with no salary to cover it, and had to meet their own transport costs. So why am I unbelievably grateful for the kindness of Achievement for All to ‘let’ parents attend for free? Is it kind? Should I feel grateful? I think I should, at least in our current climate, for those willing to listen to feedback and act upon it.

On 22nd June, I was invited to contribute to a session at the Telegraph Festival of Education. Jarlath O’Brien, Headteacher of Cawarden House school and author of ‘Don’t Send Him In Tomorrow’ had worked hard to increase the representation of SEND amongst the talks. As part of that effort, Jarlath asked Emma DalrympleSteph Curtis, Matt Keer and I to attend as panel members on the topic of parents as untapped resources. As VIPs we got to drink posh tea from a posh tea box. I took my mum on my guest ticket to ensure we had someone to speak to; but there was no need. The room was of modest size but full and the people attending had chosen to hear, against a number of competing talks,  what parents could contribute. We were delighted to find people coming up to us at the end to ask further questions.

This was significant. What it shows is that, at individual level and on the frontline, there is a real willingness to improve the lives of children with SEND and their families and that there is a recognition of parents’ contributions to this. In fact, this was demonstrated later in the day through the latest research presented by Loic Menzies of LMKCo in his talk entitled ‘Who cares about SEND anyway?’ And Sarah Driver from Driver Youth Trust, Tania Tirraoro and Barney Angliss from Special Needs Jungle and I had a similar experience at the Whole School Send Summit in February when hosting tables on parent involvement.

It is incredible to me that, despite the negativity about how the SEND reforms are panning out and the very real challenges they present, when you speak to people on the ground (especially when they are out of their working environments) there appears a positive desire to change and improve. I hope this means people like Simon Knight, the new Director of Whole School SEND, are able to realise one of his priorities for the sector to ‘find effective ways to bring society together to support better life outcomes for those with SEND’. I have been lucky enough to work with Simon and know that he will focus on outcomes but also action feedback. I am grateful for people like him who work in SEND.

After the Festival, we panel members thanked Jarlath for both the opportunity to speak and the fact that he had raised the profile of SEND and of parents. He challenged our expression of gratitude and insisted that what he had worked hard to arrange should simply be a given. He’s right. An education Festival without SEND would be nonsense. As parents, we really shouldn’t be grateful for this or any of the above. However, we are.

Next year perhaps they’ll consider not hosting the SEND talks in the only inaccessible building on the site, – and perhaps one day they might order more inclusive tea.

 

 

 

tea 2

It’s easy to get a diagnosis of ADHD for your child

I received a copy of a letter to my son’s GP today, dated 9th May 2017.

It said:

Dear Dr X,

Thank you for your referral of Kipper to the Local CAMHS triage team. We have now received all the screening questionnaires back from the family and the school and these have been reviewed.

Having considered all the information presented to us, the evidence across the home and the school environment DOES NOT support the need for further ADHD assessment at this time.

The Connors’ questionnaires completed by the parents and Kipper are significant for ADHDH concerns, although the Teacher Connors’ questionnaire reports concerns that are significant for inattention but not hyperactivity and impulsivity. The school observation form suggests attention can vary and organisation is good unless unfamiliar routine. However, the Educational Psychologist gives more evidence of distraction and attention difficulties in the context of ASD i.e. difficulties understanding language or sensory overload rather than additional ADHD symptoms. Therefore overall the evidence does not appear to be consistently significant to warrant further assessment into ADHD. We will therefore be going ahead and closing Kippers file to CAHMS.

Yours sincerely

CAHMS Nurse Therapist.

Problems with this letter:

  1. Kipper is in a phenomenal provision in an inclusive school. His needs are met not just every hour, but every minute. There is an exceptional plan to keep his motivation and attention high. He has been in 8 educational placements and previous ones have suggested I ought to seek for him, an assessment for ADHD (presumably with the aim of medication). I refused to do so until the provision was right.

  2. Kipper hasn’t seen an Educational Psychologist. They made an assumption on the basis of the exceptional quality of the report the school had written for Kippers’ annual review over a year ago. He had been there only a few months and they rightly focused on the aspects of his ASD.

  3. That parent/child questionnaires differ from school reporting is not unusual, and doesn’t mean the child not have ADHD. This should always warrant further assessment/investigation in my opinion.

  4. The school is actually in favour of an assessment for ADHD and I believe will now support my request for a further look into this by submitting further written information.

  5. If ADHD is not assessed now (in year 5) despite Kipper himself articulating well his very clear ADHD symptoms, he is at risk of hitting a crisis in Secondary and during puberty that will take considerable time and resources to resolve. We are not seeking medication at this time (unless Kipper specifically asks for it), but he will need to access it quickly if he needs it later.

I will now (And have started already) be pursuing an appeal/collection of further evidence and attempting to persuade CAMHS to change their minds. At this stage all that we are requesting is an assessment. I have school backing, but I know that is unusual.

Please don’t tell me, or any other parent, seeking and getting a diagnosis of ADHD that it is either easy or done for excusing behaviour. Neither he, nor his Primary School teachers need an excuse for his symptoms. All are doing their absolute best and I’m incredibly grateful for that.

 

‘The Primary school cycle’

(This is written from memory from a time-limited thread on a popular social media parenting site. It was put together in 2015 by a group of parents of primary aged children with Special Educational Needs or Disabilities.)

o   Each year, we find out the new teacher so close to the end of the Summer term there is no time to contact them to tell them about what our child will need to be able to start positively.

o   September comes, and the teacher won’t meet with us because they want to ‘see for themselves and give the child time to settle in’ We wait willing our child to not fall apart until half term but see them struggling.

o   We wait a week after half term to allow settling in again then we contact the teacher. They agree to see us in the next couple of weeks. When we get the meeting, we are told that the issues our child is experiencing is because of the excitement in the run up to Christmas and the changes of routine.

o   We wait until January and by then are really frustrated. We give it a week to avoid being told they are settling back. We are so wound up by then that the teacher agrees to observe and speak to the SENDCO.

o   The SENDCO meets with us and agrees additional support which will start after half term. By then, half the school year has gone.

o   After half term our child gets support but we don’t know what that is. It is called ‘nurture group’ or ‘a few hours of TA support’

o   After Easter, the support is patchy as all additional adults are involved in last minute SATS coaching.

o   By Summer half term we all give up hope and look to the next teacher with hope that things will be better.

o   <Repeat>

 

A survey of Teacher Prejudice?

CABLE CAR RESCUE PRACTICE

This morning I woke up to news that GL Assessment had published a report that stated a large majority of the 810 teachers surveyed, (57 per cent) thought there was a misdiagnosis of SEN, and over three-fifths of teachers (62 per cent) thought those children with genuine need were missing out because resources were being diverted to those who didn’t really need help.

‘As our survey of teachers makes clear, there is a widespread feeling in schools that there is a misdiagnosis of SEN and that parental anxiety, however understandable, doesn’t always help with an objective evaluation. It is not that teachers think that SEN is an inflated problem, rather that some children who deserve support are not receiving it because it has been diverted to others who do not need it. At a time when school budgets are under pressure, this misapplication of resource should not be allowed to stand.’

It is interesting to note then, in a poll in 2016 of almost 600 members of the Association of Teachers and Lecturers (ATL), that 49%  of teachers have been unable to access support and training to help them meet the needs of their pupils with SEND and over 70% believe that the current system in England does not enable all children with special educational needs to be identified in a timely fashion.

Could it be then, that lack of training/knowledge is responsible for the above figure of teacher opinion of misdiagnosis? Well it is very hard to say.

However, given that a medical diagnosis must be given by a medical professional it does strike me as rather odd that teachers are explaining diagnosis in terms of parental behaviour. It also does seem rather odd that the Government would seek out this opinion from teachers on this in the first place. Would they seek the opinion of medics on children’s maths provision? What could possibly be their agenda at this time of failing SEND reforms when both exclusions and appeals to SENDIST have increased?

Yesterday I attended a conference run by Whole School SEND (You can read a good account here) which was attended by over 200 delegates from all over the UK, all with an interest in improving outcomes for children with SEND.

I was fortunate enough to host alongside Sarah Driver, Founder and Chair of Trustees of Driver Youth Trust ,a series of 6 roundtable discussions on the topic of ‘Working with Parents and Carers’. Delegates would come to our table and we would share good practice and ideas. What was extremely clear was the genuine desire of professionals to work collaboratively with parents but an apprehension with regards to how to make it manageable and beneficial.

Of the issues raised two stood out to me the most. One was that of differences of opinion between teachers and parents on a child’s potential Special Educational Needs. And the other was about being afraid to admit lack of knowledge when there is an expectation of expertise on ALL SEN (an impossible ask).

Sarah’s eminently sensible suggestions, in my opinion,  were to meet with the parents to look at and share the evidence-base for any raised concerns. This takes the ‘personal’ out of the equation as well as demonstrating a commitment by both parties to accountability. We also agreed that asking parents for suggestions of information sources could help bridge any knowledge gap and improve understanding of parental concerns.

Sarah was also able to share that Driver Youth Trust resources are FREE, for schools and parents/carers to use with children who find literacy difficult, and I was able to make some suggestions of inexpensive good practice I have experienced from the perspective of a parent who has a  child with SEND who has been in 8 educational placements. For both of our suggestions, the diversion of support away from children who might be perceived by teachers to ‘need it more’ are minimal. And where a child’s needs are being met, there is a much reduced need for a parent to seek out a diagnosis to secure support.

Towards the end of the conference Simon Knight, Director of Education at the National Education Trust, made two highly relevant statements to this blog focus:

There is no alchemy about good SEND practice – it is just very good practice

and

Very often there is not a learning difficulty, there is a teaching difficulty -a barrier for one is a barrier for the other

If you are mindful of these things within the school, a diagnosis is going to make very little difference to the quality or quantity of support, except perhaps to provide a little more understanding, surely.

I do have to thank those professionals who came to our table at the Whole School SEND conference though. Their honesty and their openness, but above all their very obvious willingness to get their relationships with parents right, was a great experience to have to bring to my reading of the GL-Assessment report. I learned an incredible amount from them and that they came to a parent-led table at a professional conference means they are determined professionals indeed. Some of them had even attempted to arrive by cable car in the middle of hurricane Doris.

 

Pushy SEND Parents – Hallelujah

hallelujah-pic    Christmas can be a time of huge anxiety for children with SEND, (especially those with autism) and their parents. Not only are there timetable changes and demands that are little understood and often poorly communicated to the children, they are often poorly communicated to their parents who are then unable to counsel their children through the Season.

Parents often seek to redress this by presenting their frustrated selves to schools and others in order to glean that one piece of information that can ensure a successful concert, performance, participation or simply the survival of it for their child, the school’s one child of many. They know it won’t make them popular with the school and it may risk the relationship especially if they and the school don’t have a shared understanding of their child’s needs. They know that regardless of the risk to their relationship with the school, their child’s success of otherwise this year can move them on or set them back by months. The strain and anxiety this can cause parents can be beyond measure and for a little time they may even lose it completely. This is my experience and I know I speak for many others.

But, for me, this Season so far has been quite marked by the absence of anxiety.  When your child is finally in a placement that is so good at understanding needs, so committed to working with parents, and so determined to give the children the skills they need to not just cope with changes but enjoy them, well what a extraordinary effect that can have on a family.

Just a year ago, Kipper had an opportunity to sing in the Youth Scratch Messiah at the Royal Albert Hall with his club choir. He would have to be there at 10am for rehearsals, have a packed lunch and £3 for a programme, and perform at 2-4:30. There were many other choirs there. The day was fraught with problems and the sensory environment can be overwhelming:

  • The noise both when not rehearsing and when all choirs sing together is incredible.
  • The proximity you must sit to your neighbour can be a challenge.
  • The coordination/planning required to get your coat and bag off and on a peg where you won’t lose it and follow instructions as to where to keep and retrieve your packed lunch.
  • What to do with your £3, and how to know when and how you must exchange it for a programme.
  • How to plan so you won’t need the toilet half way through the concert.
  • How to know which choir is yours when you have face-blindness and the room is full of children.
  • How to ensure you have spotted your parent watching at the performance.
  • How to know when to stand up and sit down and not lose your music.

None of these things are any kind of disaster if you get them wrong or need a break EXCEPT if your disability means you lack the skills to address them or rationalise them in your head. EXCEPT if your lack of flexible thinking skills means you can’t eat one of the teachers offered sandwiches because you’ve lost yours, or be happy to peak at a neighbours programme/music because you dropped your squash over yours. EXCEPT if you are so overwhelmed by the sensory environment that you just have to stim and stim now. EXCEPT if your inability to locate your parent means you are convinced they aren’t present. EXCEPT if you lose your £3 and spend the next 5 hours terrified you’re going to be punished. EXCEPT if you have a toileting accident at age 8 because you hadn’t planned for a long performance or because you were too anxious to use the strange toilets at the venue. EXCEPT where the agreed 1:1 support has decided the mother is overanxious and is nowhere to be seen.

success this year was down to the high expectations of the school he now attends

Well this year he got to sing at the Royal Albert Hall again and the difference in the whole experiences for us as parents was incredible. Some of the success this year was due to having completed a successful day a year ago, set up by his pushy SEND parents and supported by the wonderful choir staff who managed to ensure strategies were in place to make it so. But mostly, this success this year was down to the high expectations of the school he now attends coupled with a commitment to resource those high expectations and ensure he is equipped with strategies to be flexible and ask for help.

This time round I was sat in the cheap seats right up at the top where Kipper had little chance of confirming my attendance, rather than in an expensive box we couldn’t really afford with a huge flag and a torch to attract his attention. I gave him a £5 for the £3 programme and told him he could keep the change if he didn’t lose it. I made him sandwiches because they were convenient for me (he hates sandwiches but, tough). I knew if he lost his coat he would tell an adult and attempt to find it or plan to wait until the end so I could help. No adult was seated near him nor did I ask for one to be. Tonight he is in another concert at a venue he’s never visited before. I plan to get there late and enjoy my new found right to sit at the back and not have to queue early with anxiety.

Hallelujah! indeed.

This morning though, I attended my 4yr old’s 9:30am Christmas performance and went straight to the hall after I had dropped him off.  I thought I was early, but there, sitting right in the centre of the front row was a parent of an autistic child. At first I was surprised, and wondered what magical powers she possessed to get such a seat, – and then I remembered.

they put their child before even their relationships with other parents

So to all settings during this Season, if you find yourself with pushy SEND front-row parents, please be kind to them! You don’t know what anxieties in their child they are addressing by being there, what emotional journey they had to go through in the days leading up and how they put their child before even their relationships with other parents who would probably have liked to have been at the front too. Please also consider what you could be doing for their child this coming year that would make those parents feel more comfortable and able to take a back seat next time. They really would prefer to be seated at the back without the anxiety.