Wednesday, 25 March 2015

Taking the time to notice the little big things

Its been quite a while since I last posted. It hasn't been for a lack of anything to say, but rather a lack of time. Giggles Play started in January after a year of planning and fundraising and I've been rushed off my feet.

But my need to document and share my experiences with Seth hasn't changed so I am going to work hard to keep this blog going and post regularly.

Seth has been really looking and using his hands. Also his balance when sitting unsupported is improving; he can play with a football, rolling it around his feet and legs whilst sitting on the floor. When it rolls slightly away he tracks it and shuffles round to it so he can carry on playing. I watched Seth do this the other day and it was the first time I have seen him actually move towards something to carry on playing with it! The whole time he kept his arms and hands up close to his body out of the way.

When seated in a supportive chair or cuddled next to me on the sofa as in the photo, Seth is finding it easier to use his hands to play, like popping bubbles on his iPad app. Today when I helped him stand his arm flailed and his open hand rested on my face. I assume it was accidental but the feeling of his relaxed open palm was still a gift.

Such smalls things that are actually immense!

Wednesday, 24 December 2014

That's teamwork

When Seth was born Craig and I became a team. We didn't consciously do it but we grew more dependent on each other and became tied by even stronger bonds than as a couple we had had before. We got married a few years later and had the mightiest of celebrations of that partnership.

When the three of us are out we have a choreographed dance; for navigating doors/ pavements/ people, responding to Seth's needs and sharing a meal with Seth. I especially like how when eating out we will take it in turns to eat so that Seth's food is chopped up, cooled and then given to him without one of us getting too hungry. Obviously, we have enough times when the dance turns into more of a battle but more times than not we are in sync.

But the team falls down when we are all ill! In fact these past few days I've been trapped under a duvet with my head full of feverish thoughts realising that we've been going about things wrong. We were so happy to strip away the level of equipment support as Seth needed it less but we've missed a vital point. That we should plan for the worst contingency, not the best. Because this week I haven't had the strength to carry Seth around but, being poorly too, he's refused to walk and in fact been pretty much a dead weight. We don't have a chair that we can move Seth around in the house anymore so there is no alternative. And carrying Seth upstairs for a bath at the end of the day?! Ha!

It has made me acutely aware of how dependent Seth is on us. If Craig or I don't get up out of bed in the morning then Seth doesn't move. It doesn't matter how tired, ill or worn out we are - Seth can't climb out of bed, he can't reach for a drink, he can't do anything but lie in a nappy that he's worn all night, trapped in a room alone.

Well we are getting a wet room hopefully February and we are getting a replacement chair. Our lack of suitable chair for Seth has been holding up our respite and so a replacement has been rushed through but with no consultation from us. I've been so busy I was almost tempted to let that happen given our need for respite but this week has reminded me how important the equipment we have is and there is no way we should allow a new chair - something that Seth and us could be very reliant on at times - to be chosen without any input from us. Even a month's delay to our respite will be worth us not being saddled with another rubbish chair for the next two years!

Sunday, 14 December 2014

Seth turns 7 and has his Christmas Concert - but it's a frightening time for young people with learning disabilities

I read an article on the Mencap website, on Friday. It was how a 23 year old man with a learning disability died because his care plan wasn't followed by the supported living service he was, unhappily, living in. Nico was born with cerebral palsey and later diagnosed with profound and multiple learning difficulties. Nico was moved because his local authority stopped funding his school placement because they "deemed his care package to be too expensive", even though his family and experts in the field warned that the alternative placement could not meet his complex needs.

According to Mencap in research they conducted in 2013, over 1200 children and adults die across England every year because they are not getting the right healthcare.

Seth turned 7 two weeks ago. We had a lovely party and I'm so proud of how he is growing up. He stands much straighter now, showing off how tall he is. He's starting to move his arms and hands in a new way and is able to hold onto items now. We have frustrations with some services and equipment but on the whole the system has worked for us and for Seth. Hi school in particular - Friday was the school Christmas Concert and he was a star on stage bopping to the music in 70's garb (yes that is a dancing reindeer behind him!)

But what happens when he turns 16 and leaves children's services? Most of the time I don't think about it - it's a long way off and why worry about something that's not relevant right now when there is enough to worry about that is? But everything I do now is with one eye on the future - I'm terrified that Seth will be reliant on others for his basic needs. I'm trying to teach him to feed himself and I'm trying to potty train him so that he will have some control over the very basics of his life. When his older I want him to be able to experience leaving home and live in a community where he is with his peers, continuing to learn, having fun and stimulated. I know at least one place in England like this but I imagine its places are hotly contested and expensive.

The description of Nico in the Mencap article reminded me of Seth and exemplifies all the fears I have for Seth's future. Entirely vulnerable to the whims of the Local Authority budget and a system that continually fails the most vulnerable.

Tuesday, 11 November 2014

Trips to the hospital and lovely cuddles

The other weekend Seth came into bed with us for a lie-in.

He started off sitting between us and then snuggled down and rolled into Craig. It was so lovely! In the past when we've tried sharing our bed with Seth so that we can enjoy a lie in together he hasn't relaxed at all and mostly just got upset wondering why we weren't giving him breakfast. It hasn't been an enjoyable experience at all. But he's grown up quite a bit since then!

In fact he has seemed particularly sharp these last couple of weeks; being more helpful when getting dressed and, at bedtime, lying back and opening his mouth when I tell him it's time for his medicine. He's really listening and responding. And he's being very interactive with Craig and me. It's a real joy.

Which is a nice counterbalance with how poorly he's been these last few weeks. I'm not sure if he picked up a bug over the half term week but he definitely was struggling. He didn't want to walk at all and when sitting on the floor would start to fall sideways! He also had a rather explosive bottom! The dentist also told us Seth is cutting two adult molars at the moment so whether it was a combination of factors but despite the medication he's on Seth had a fit at home the weekend after half term and then last Thursday school called an ambulance because he was having clusters of fits. Apparently today he has fitted again as well.

Obviously, the drive to school last Thursday was quite stressful - Seth hasn't had clusters of fits since he was 3 and so I was slightly panicking about it's implication. The ambulance technician had to give Seth diazepam to bring him round and that's never happened before. The worst bit though was when, in A&E, they tried to take blood from Seth and after 3 different failed attempts to draw blood they then stuck a needle into Seth's wrist and kept wriggling it around trying to find the vein with Seth squirming and complaining clearly in pain and increasing distress. After getting more and more anxious trying to hold Seth still I made them stop. I shouldn't have let it even get that far - I know now that I will make them wait for a paediatric specialist if we are in that situation again. We made it to Paddington assessment unit but by then Seth was completely fine and eventually we simply went home. No one there felt it necessary to take any blood thankfully, as it is Seth's left hand and arm is covered in bruises. Although they don't appear to bother him.

I'd forgotten how utterly draining the hospital experience is, although that is something to be thankful for - that it is infrequent enough that I can forget.

Friday, 10 October 2014


We are meeting our potential respite family for the second time tomorrow. They've been arranged through Family Link and we've already been to their house once. We've been offered 2 nights a month and it will replace the 3 hours a week we were getting from Direct Payments.

We have been so conflicted about getting respite. On the one hand we asked for it because of the lack of sleep; Seth frequently wakes in the night. Sometimes he will just chat to himself, sometimes he will be laughing and sometimes he will be very upset. I think that since it's been realised that he has fits during the night and is on medication, his sleep has improved but it can still be quite unsettled. So, getting a couple of nights decent sleep - even the potential of going away for a night - is amazing. More than that, it's the idea of having a morning to ourselves. To be able to eat breakfast without having to feed and care for another person at the same time. Wow! We get really excited about the prospect.

But, leaving your child with another family? Especially a child so vulnerable is ridiculous surely!

This couple has been offering respite for children for years and they are experienced with children with a range of different needs. I was a little put off when I was told that they would only offer us a family who had downstairs accommodation and this couple were the only couple who had downstairs accommodation (so not much choice for us, then. You can say no to these but we don't know when anyone else suitable will come along!). However, they seemed really nice and we felt reassured.

So, now they come to us for a second visit. We've started properly thinking about what we can do with a night without Seth. But the reality? How do you do that?!

Saturday, 27 September 2014

A week of extremes

Last Friday Seth came home with a certificate from school assembly. He had received the most stars for his work than any other child at school for that week. Very proud! But we suffered for it at home. He was shattered and at home he was struggling with the simple things - he was too tired to eat breakfast so we had to send him into school with his breakfast packaged up several mornings. We are only a couple of weeks into the new school term so hopefully he will adjust soon!

Giggles Play, the sensory and soft play centre I am setting up has been a lot of work as well. We've received some funding to purchase equipment and insurance, including £5,000 from Northamptonshire Community Foundation, which is fantastic. I have more applications pending, including a £500 grant from Skipton Building Society's Grassroots Giving. We are shortlisted and now it's down to public vote. If you haven't done so already, please vote for us by visiting our profile page. We also had a fundraising swish on Thursday and raised over £200 and it was a really fun night.

The most important news is that Giggles Play has launched a crowd fund project to raise the money for a van. It's called 'Van for Giggles Play' and if you read this blog then please visit the site and pledge. We've got £10,000 to raise in 4 weeks and if successful it will put the 'portable' in 'portable play centre'! I've had a bit of a crisis with PayPal not working properly, so I've gone from being so excited to complete despair. After I've published this post I need to go back into PayPal and work out what I need to fix. I think I'm going to have to post documents to prove we're a real organisation! In the meantime, please support us and pledge!

Monday, 15 September 2014

Seth sees colours!

Seth and I were playing with a shape sorter. It's a lovely wooden toy that a friend bought for Seth a couple of years ago and every so often it comes out of the toy box. If Seth is on form he really enjoys playing with it but often he objects to it so I pick my times carefully.

Yesterday, he seemed very happy to be sitting in his chair so I brought it out. I did the usual, scattering the coloured shapes onto his tray and asking him to choose one. He then moves his right arm to nudge one and I post it into the sorter for him.

This time, however, I realised that the colour he chose was the same colour as the side of the sorter that was facing him. I praised him and turned the sorter over to show a new side. He then, in turn, chose the correct colour shape that matched the side that was facing him! At one point he even lifted up his left arm, which he rarely uses, and landed his hand on the yellow shape - correctly selecting the correct colour.

We went through it twice and I was so excited before Seth seemed to get weary of it and then ended up sleeping most of the afternoon so it obviously took it out of him. But it was amazing and he has never before shown so clearly that he can distinguish between colours. Coming after the 'severely visually impaired' diagnosis, it does show how cortical visual impairement is so changeable! I wish I had video footage to share but I wasn't going to stop playing to mess about with my camera! We'll just to do again soon!