First week

I know there is some controversy over the term ‘special school’ and so far when referring to Pudding’s new school I’ve been careful to use the official term specialist provision instead. But do you know what? After his first week there I’d like to say it IS special.

To be fair, most schools are special places, full of amazing teachers and hope for the future. (When they are not being destroyed by funding cuts, the need to teach irrelevant grammar, endless curriculum changes, etc, etc, but I won’t go off on a rant about that. Promise!)

But this place feels even more special to me. As I’ve said many times before, I’ve been so happy with the way Pudding’s mainstream school has done their best for him, welcoming him and all his ways into the school community. Yet, now I feel he’s in a place where he truly fits in. At mainstream, he would always stand out as being different and be treated as … well… a special case. But now, he’s with other children who have the same or similar needs.

Pudding in white school topIt is hard to describe the relief I felt on getting the first letter home describing what his class was going to get up to this half term. I no longer have to deal with the heart-sink of reading ‘this week we’re going to be looking at number bonds to twenty’ when my son can’t even count to two. Instead I read about an emphasis on mark-making, sensory play and grouping objects. They work on self-care and regulating emotions, do dance and explore stories in amazing interactive ways. It’s exciting watching this new future unfold in front of him.

His first day was unsettling of course – waving him off in a taxi and knowing that I wouldn’t get to speak to his teacher directly at pick-up like I’m used to. But as the week went on, we got into routine. Pudding happily looked out for the taxi each morning, and climbed into it looking very proud of himself. And in the afternoon his welcoming committee (me, T, Niece and Nephew) waited impatiently at the window for the first glimpse of his smiling face. We have a home-school communication book to pass messages back and forth. And pictures are regularly added to an online account so that I can see what they’ve been up to in class.

school

One of the biggest changes for me is the school run. I’m used to looking out the window first thing to check the weather, decide if we need the buggy cover. I’m used to getting boiling hot with the effort of pushing the buggy and stripping off layers by the time we reach school. Yet now, T and I saunter along and I could even have the luxury of an umbrella if it’s pouring. But oddly, I miss it. I miss other kids saying hello to him as they head to the nearby secondary. And I miss Pudding – even though I only see him for about an hour less each day. But it makes his greeting when he does get home even more special.

Apart from that, I literally couldn’t be happier. And Pudding seems pretty happy too, so win-win all round.

 

Moving on

In amongst all the negative stuff about antibodies, trial and so on, it is a pleasure to have some good news for a change.

Way back in September 2015, Hubby and I were looking at schools for Pudding and trying to work out what would be best for him. It was hard making a decision because of course we couldn’t see into the future. We had no idea what the next few years were going to bring. We didn’t know whether he had the severe version of Hunter Syndrome that affects the brain (he does), whether he would get onto the clinical trial that might help his development (he did), whether he might improve enough to start catching up his peers a little (he hasn’t).

Pudding smiling widely in his red school shirt.We already knew what the local primary (which T attends) was like, and we also went to look round the nearest specialist provision. (The term ‘special school’ still makes me wince a little, though there isn’t really an easily understood alternative.) It was lovely there but in the end we chose mainstream. I thought it would be good for him to be rooted in the local community and good for others too, to have some understanding and acceptance of those who are a little different to them.

I will never regret that decision as there have been many positive aspects to Pudding’s time in mainstream. However, going into Year 1, I knew that the challenges for everyone would get greater. Whilst his peers were all learning to sit nicely and be taught more formally, that was never going to be easy for my little whirlwind. We tried, and failed, to get a split place between the mainstream and special schools. I had found reaching that choice a very emotional journey, and even harder to then be turned down.

But a place has now come available and Pudding will be starting at the special school after Easter.

I know he will be missed in mainstream – for a start there were three devastated faces when I sat T, Niece and Nephew down to tell them the ‘good’ news! His TA will have significantly less bruises but will miss him awfully. And the rest of the school will probably seem oddly quiet for a bit.

One thing I hadn’t expected was the reaction of our SENco. She was quite emotional when she told me how hard she had found it to paint a less than positive picture on Pudding’s EHCP – that it made her feel that she had somehow not done her best for him. Yet this couldn’t be further from the truth.  In fact, by being honest about the limitations we were working under in mainstream she has helped him find a place where I hope he will be able to flourish. I would hate her to think she has failed in any way as she has done so much to support both Pudding and I while he has been at the school. She has coordinated people, resources and reams of paperwork. As well as catching up at her SEND coffee mornings and at formal meetings, she has also been known to email me out of hours when I’ve had bad news. I’ve read so many accounts from other people who have never had anywhere near this level of commitment from their SENco, so I hope she knows she is one in a million.

I know I’ll be an emotional wreck on Pudding’s last day in mainstream but I am truly excited to watch this next stage of his life. Onward and upward!

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?’

Pudding smiling widely in his red school shirt.

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.

Sleep (again)

So, any regular readers will have been waiting on tenterhooks for an update on how Pudding’s move to his own room went and whether we’re getting any sleep. Or, more likely, will have completely forgotten about it….

After a massive clear-out of the office (which has now taken over our bedroom), Pudding moved in just before Christmas. The change didn’t seem to phase him at all, though I discovered that with his door directly opposite ours he sounded even louder at night. We waited until after Christmas though to take the cot sides off, and I am very glad we did.

When T graduated from the cot we did all the usual things. We chose new bedding, we talked about how he was going to be in a ‘big boy bed’ now he was growing up. It was an exciting time. But with Pudding it was different, as of course everything is.

When a child has communication problems and little understanding it is far more difficult to prepare for a change. I had no idea whether he would take it in his stride or whether it would throw him completely. Turns out it was the latter.

I suppose that having been in a cot for almost 5 years, apart from a few nights in a hotel room with me, it was quite a reassuring space. To suddenly have that security taken away rocked his world. He understood straight away that he could climb out of bed, and he did, finding it far more distressing that he was going to be left in the room by himself.

Every so often, like when we have the hour change in spring or autumn, he has found it more difficult to settle at night. At those times we’ve simply had to stay in with him until he fell asleep, only for a few nights, and I expected this time to be the same. It was a much slower process though: sitting by the bed with him on my knee to read stories, turning the light out, persuading him to get into bed, staying close by and talking or singing until he was fast asleep. Time consuming but totally worth it to save him from as much stress as possible. Gradually, gradually this has changed and I can now get him into bed, look at a book, turn the light off and go straight out. (On nights when it is Hubby’s turn, Pudding still has him wrapped firmly around his little finger though!) Dropping nap-time completely has helped too – he often can’t keep his eyes open much past six thirty now.

His distress was of course tough to deal with. What mother enjoys seeing their child in tears? However the worst aspect was that it brought on a period of separation anxiety at the start of the school term. Whilst previously Pudding had run in laughing to give his TA a hug, all of a sudden he was clinging to me and crying. This I found very hard and was one of the contributing factors to my low mood last month. But again, with the help of his TA (who became very good at pretending to hide from him) we’ve got through it and out the other side.

Strangely enough, the thing I was most worried about – him getting out of bed at night – hasn’t happened at all. As long as it’s still dark, he has stayed in bed for his nightly partying. We’re not taking any chances of course; he has a very stiff door with a stair-gate on the outside of it.

I’m just not looking forward to those summer mornings when it starts getting light really early…  Knock, knock, knock. ‘Mum-meee! Muuuuum-mee!’

 

 

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.

 

Progress

I am finally allowing myself to believe that this clinical trial is working for Pudding. Although I have seen the results that other boys have achieved, I have until now always had to remind myself that:

a) a trial is exactly that. A trial. What works for some may not work for everyone and that is why they have to test it out.

b) at the time of testing Pudding had almost the lowest possible score that would still allow him to go on the trial. With results that unpromising I had no idea whether this would effect what we could expect from the drug.

The natural course for those on the most severe end of Hunter Syndrome is for progression until some time around age 4 or 5, and then a time when skills plateau before being gradually lost. This is because the normal enzyme replacement therapy that Pudding now receives weekly doesn’t cross the blood brain barrier to work there. In the hope of stopping this regression, every  four weeks we make a trip to Manchester for a concentrated form of this enzyme to be injected into his spinal fluid to break down waste products in his brain.

Since very early on, Pudding has always continued to develop and improve, albeit very slowly compared to others in his age group. Lately it feels like his rate of progress is making a little leap, and as he gets closer and closer to his fifth birthday we have to see that as a good sign.

Most of his achievements might not seem very much to another mother of a four and a half year old, but for us they are massive. As well as continuing to add to his vocabulary, his understanding is continuing to improve. For instance, when playing ball the other day I told him to ‘Stand further back’. I had to work SO hard not to accompany it with a gesture as I wanted to check whether he understood without. And he did.

IMG_8134He can now almost finish this set of jigsaws without any help; he picks out all the bits correctly and only struggles with putting together the three-piece police helicopter. (He is also often very insistent that the policeman drives another vehicle, but I’m not going to argue about that one!)

His ability to compromise is also improving. Rather than just stubbornly demanding TV he can now sometimes be encouraged to help tidy up first.

He has got used to lots of new routines at school and has even in the last few days been able to pick out his name from amongst all the other children’s. (Not something I’ve been able to recreate at home, but again we can’t have everything!)

So I should be feeling nothing but pride in his achievements and relief, right?

Well…mostly.

Part of me (a small part) doesn’t really want the trial to work. I can hardly believe I’m actually writing this. What an unnatural parent I must be to wish away my child’s chance at life. But much as I feel bad for this I can’t brush my emotions under the carpet and pretend I never have them.

The truth is, if the trial doesn’t work then I won’t have to live with the fact that we have this chance when others don’t. Others who didn’t pass the screening, or for whom it came too late. Others like Ethan who I was so happy to meet only a few weeks ago but who is currently having a hard time of it. Other mothers’ sons all around the world who deserve a chance too.

I know that allowing my child to suffer will not alter the suffering of others, so of course we will continue on this path. I hope it is proved to work. I hope the NHS will accept it as a treament. But I will continue to feel guilty about it.

So I ask of you, please celebrate with us when things are going well, but don’t forget the rest of our MPS family. I’m grateful for this trial, I truly am, but it is only a stop-gap. A far from ideal solution. We need a cure.