Paperwork and assessments

Paperwork. Every SEND parent’s favourite thing. NOT!

Endless pages of assessments that never really become easier. The joys of having to answer ‘No’ to question after question about everyday skills that any unaffected five-year-old could do with ease.

When Pudding first entered the clinical trial his DQ (development quotient) score was 56 (so 56% of what another child his age would get). That put his abilities at around half his actual age. Two years later I don’t know what it would be now. He’s nearly six and I often describe him as functioning like a two year old, but although that’s true in some respects it is way off in others.

The last few weeks I’ve been filling in information for the Imagine ID project. This large-scale study aims to collect data from families on how genetic conditions affect development in children. I’m not complaining really, because it is something I have chosen to do – research is important. But I must admit it doesn’t always put me in the best of moods having to face up to the realities of Pudding’s abilities.

Some of it was pretty straight-forward – other questions not so much. For instance, it’s pretty difficult answering a question like ‘Does he blurt out answers in class more or less than other children his age?’ when he is non-verbal! And I’m not quite sure it’s worth getting him to do the ‘fun drawing task’ as it will just be a scribble.

Anyway, I’ve now had the report through and it confirms (if I didn’t know already!) that he scores high for troublesome behaviour, attention difficulties and sleep.

And then we have also had the review meeting for Pudding’s EHCP (Education and Health Care Plan). This is a document that sets down what a child needs to have put in place to help them succeed at school. It is certainly more positive than some forms (yes, DLA form, I’m looking at you!) as it looks at what he has achieved alongside setting targets for the next year. For instance, this time we were able to put a tick next to ‘Can take his coat off’!

But again, it can be a bit brutal facing reality. The educational psychologist had been in to assess him and I was asked for permission to change the way Pudding is described from ‘moderate learning difficulty’ to ‘severe learning difficulty’. The teachers did apologise when asking this, as they were concerned about how I would feel. Looking at the descriptions though, I know it makes sense. When Pudding was first diagnosed he was at playgroup and his differences weren’t quite so obvious. As time goes on, he is progressing but at a far slower rate than his peers, and that gap is widening and widening. So that’s another label he’s acquired.

And on Tuesday it’s our next trip to Manchester with …guess what… the psychological assessments again!

But of course, none of these assessments will ever truly give a picture of Pudding is like. They can tell someone that he is non-verbal, prone to violent outbursts or that his DQ is hitting new depths. But they can’t tell anyone how gorgeous his smile is. Or how he does a funny little dance when he’s excited. Or how much we love him.

Which is why I’m getting better at looking past those forms and reports. And instead I keep in my mind pictures and memories like this morning when T went upstairs to get Pudding up. I watched on the monitor as my big boy sat on his brother’s pillow and gently stroked his head, telling him that he’d put his cereal out ready. I watched him bend down and kiss Pudding and help him turn the duvet down. And I knew that these little moments are what life is really about.

 

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School’s out

So here we are – last day of the summer term, and Pudding has done a whole year in mainstream.

This time last year I was anxiously waiting for September and wondering how things would go. There have been a lot of emotional ups and downs since then, but right now I’m facing the future with calm.

In reading other blogs from the disability world, I’m well aware that schooling, as with many other services, is a lottery. I feel very lucky that we somehow managed to get hold of a winning ticket. So many parents face discouraging messages: ‘we don’t feel we can meet his needs’ or ‘perhaps your daughter would do better somewhere they have more experience’. Yet at our local school I have only ever heard ‘How can we make this work?’

For inclusion to succeed there has to be the will, throughout the school, to enter into it wholeheartedly and there are many reasons why this year has worked for Pudding. A headteacher who believes in inclusion enough to have a member of staff dedicated to SENCo (Special Educational Needs Coordinator) work three full days a week. A SENCo who holds regular coffee mornings for parents to discuss areas of concern. Teachers who welcome difference into the classroom and explain it to other children. And most of all, a teaching assistant who throws herself into learning Makaton, developing resources, teaching and caring for Pudding as if he were her own.

 

And I have to mention the other children – one of the benefits of mainstream which I never expected is the way Pudding has been taken to heart by the whole school community. To watch the Year 6 children scramble to give him high fives has been such a joy to me.

There have of course been some negatives. There was the nativity which didn’t go quite as I’d have liked.  On days when Pudding was in a bad mood I would dread hearing that he’d badly injured another child when throwing something. Perhaps the most difficult thing, again unexpected, has been emails from the class teacher explaining what phonics or maths the children were learning that week. I’m afraid I just stopped reading these regular reminders of how far Pudding is behind on ‘typical’ development.

Much as I have loved the positive experience we have had in reception year, I did start to worry what Year 1 would be like. Whilst his peers move towards more desk-based work, Pudding still struggles to sit and concentrate at anything for long. In an open-plan environment I had visions of him becoming more and more disruptive. We took the difficult decision to apply for a split placement – requesting that he stay in mainstream for 2 days a week but then have the other days in a special school.

I say a difficult decision: logically I felt it was the right thing to do, but emotionally it was another big step on the path of acceptance. I wanted to give him the best of both worlds – keeping him rooted in the local community, but also having the chance of more specialist teaching with other children on his own development level.

Our request was turned down, due to lack of space in the special school.

I won’t deny that this decision really upset me.

But once again, Pudding’s current school stepped up to the mark. Almost immediately I got an email from the SENCo asking how I was, and reassuring me that they would put in place whatever was needed to make things work. And they have already. The children all move up to their new class three weeks before the end of term, so Pudding has now been in Year 1 for three weeks. In consultation with the special school they have set a personalised timetable for him and found a room where he can go to do focused 1:1 work. He has regular access to play resources and plenty of interaction with his classmates. And so far the results have been really positive.

None of us know what the future holds. Even with the intervention of his trial meds, the gap between his abilities and that of his peers will continue to widen. We may need to apply for a full-time place in special school for the next year. But for now, I know he’s in a great place.

And he’s happy. At the end of the day, that’s really all that matters.

Nativity

Ah, the school nativity play.

That time where parents struggle politely for the best vantage point to watch their sweet child parade onto the stage with all the others. The tinsel, and cobbled together costumes. The angel so busy looking out for her parents that she carries on walking and nearly trips over a shepherd. The child who says their words so quietly that no-one can hear. Another who shouts down the microphone making everyone jump. Teachers scurrying around organising everything yet trying to stay unobtrusive as this is the chance for the children to shine. It’s guaranteed to set off the happy tears in all but the grumpiest of Scrooges.

I so wanted this to be a positive post. I was looking forward to the nativity and watching Pudding join in with his peers in his own fashion. I pictured him smiling and waving, going in the wrong direction and making us laugh.

img_6929He had been cast as one of the stars and we’d agreed beforehand that his special chair would be brought in to the hall. This meant that he could be strapped in safely when waiting rather than having the danger of falling off the stage. I knew this would make it very obvious how different he is from the others but decided it was for the best. His difference was highlighted even more when he wouldn’t allow his star costume anywhere near him, so was the only one in school uniform.

It was clear from the off that he wasn’t happy. Bribery with food worked for a while as it usually does. He did enjoy ringing bells at the end, and joined in the dancing very briefly. But as I watched him pulling another star’s costume and hitting the TA behind him, I was crying and it wasn’t the happy tears. I don’t like being hit by him myself and I love him. While I sat up there in the audience powerless to do anything about it I felt worse and worse. How long would others put up with that treatment before they say ‘enough is enough’ and ask politely whether this is the right place for him?

Having a child with additional needs is full of ups and downs of course. And those moments when it is hit home to you quite how different they are from other children their age are definitely responsible for many of the down times.

Thank heavens for others who understand. Later I bumped into someone else who has a child on the school’s SEN register. I told her that I had cried at the nativity and not in a good way, and she instantly knew what I meant. Though our children’s diagnoses are not the same, we share many aspects of experiencing difference in a ‘normal’ world. It was definitely a silver lining in that cloudy day and helped me put things back in perspective.

Pudding’s TA told me the next week that it hadn’t worked out as well for him as the team had planned and how bad they had all felt. But I didn’t blame them at all. They’ve done a fantastic job at making him included – including using Makaton during the performance to wish everyone a Happy Christmas. If anyone I blame myself. He had been off school the previous two days because of a cold, but I thought he was ok that morning. Now of course I have to ask myself whether I really thought that, or whether it was just because I wanted him to be. If he’d been feeling more himself he’d probably have revelled at the chance to perform and show off to an audience, but as it was he just didn’t want to be there.

When Pudding first started school I insisted that I wasn’t sacrificing him on the altar of inclusivity. If mainstream wasn’t right for him then we’d look at other options. What I need to remember is that this applies to the little things too. Inclusion isn’t always the right thing. Not if it makes him unhappy. I have my own hopes and dreams for him, but ultimately I want him to be happy. And if he is, then I will be too.