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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

Respite

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!

Saturday, 30 August 2014

Let down by Occupational Therapy

I'm feeling let down by Occupational Therapy. We had the same OT for a few years and whilst it always took a while to get equipment I always felt that our needs were responded to. I actually felt bad listening to other mum's who talked about the lack of support they felt and the equipment they didn't receive whilst we always got everything we needed.

However, our OT was seconded to support a different team and we were assigned a technician. She's very nice and says 'ooh' and 'ah' when she comes to visit but we've had the same crappy chair that is not fit for purpose and nobody seems to be doing anything about it. This chair, which is a Breezi-max, is a wooden chair. It was chosen because it has no wheels and it doesn't change height. This means that there is less movement to encourage Seth to bounce or rock when he's in it. So I get that. However, when it arrived it had no padding and so Seth would slam his head back against the wooden headrest. We complained, several times. It was very distressing for me to watch him hurt himself and they finally came and removed the head rest entirely. So Seth simply continued to throw his head back, seeing how far he could fling it back. This was equally distressing. He would throw his head back if we tried to leave him, when his meal was over, when he didn't want to be in the chair anymore, even, increasingly, during meals.

In addition, the tray didn't fit properly. There was a massive gap which allowed his food to fall into his lap when he ate. It was so big that if I tried to put a toy onto the tray, if Seth did play with it it would fall into the gap.

After several phone calls I was advised to stop using the chair. Useful! We had a couple of review visits with the Breezi Max sales rep and then, finally, months later a new, padded headrest arrived and padding that we could fix around the tray which filled the gap and made it more comfortable against Seth's tummy when he rocked (because he still rocks, even though he doesn't get the same feedback as he did from his previous chairs). But after a couple of months of use it just keeps falling off. By now we've had the chair for over a year and I've learnt to really dislike it. The lack of wheels means that I have to carry it if I want Seth to be in the same room as me, and it's a heavy piece of wood - even without Seth in it. If I try to drag it, it scratches the wooden floor. Either that or I have to leave him in the living room whilst I go into the kitchen. It doesn't hurt him to be alone every so often but how am I supposed to read his body language and voice tones to communicate with him if we're at different ends of the house? Plus, whilst it all being wood makes it easier to keep clean, I wouldn't want to sit in a chair like that for long, so how can I expect Seth to tolerate sitting in it longer than he has to?

I've explained that I'm really not happy with the chair and we need a proper review. So now they've just stopped phoning. I suppose it's time for me to phone and complain again!

On a positive note, today we played with some gadgets that Speech & Language gave us. They installed some software onto my laptop and a piece of hardware that allows us to use a switch, instead of  a mouse or keyboard. Here is a video of Seth playing with it :)




Sunday, 24 August 2014

I'm getting lots of cuddles from a very weary boy!

We're having a very quiet bank holiday. Seth seems to be growing a new tooth, although I can't see where. As he hasn't lost one it must be at the back which explains how much he is suffering.

Yesterday he spent the afternoon asleep after having a melt down at lunchtime. He was so tired but every time he took a bite of the sandwich he just screamed. I can only assume that his gums are hurting. Today I managed to get Seth to eat his lunch and then we had a lovely cuddle on the sofa where he fell asleep in my arms. I carried him to bed and again he slept the afternoon away. When he woke we discovered he'd had a poorly tummy and the poo had soaked through his nappy and trousers. Lovely! He wasn't bothered though and he even tolerated being showered which bodes well for the wet room we are hopefully having installed sometime before the end of the year.

It's a problem though because we've got the breathing excercises we're supposed to be carrying out each day, we've got all these speech and language toys that we've been lent for the summer holiday and we've also just been given these wrist splints that we are supposed to be building up his tolerance too. & he's just so sleepy and grumpy at the moment that we are spending a lot of time just cuddling. It's lovely but I feel guilty that we're not doing all this stuff. I know that's silly because if that's all he's up to then that's all we should be doing. But it always sounds lame when you get to the end of the holidays and you have to explain why you didn't anything! We have managed to fit in using some of the toys and actually just doing it for a few minutes is suiting Seth better and he's really enjoyed using a switch to turn a lamp on and to make a whizzy light toy light up.

We did manage to do the breathing excercises every day for over a month. But then Seth didn't want to lie still for them and it got harder to do. I really wanted to do them for the full 3 months so we could evaluate if they were having an effect. Certainly, I haven't seen any change and apparently even in that short space of time we should have seen something. I have to say I've become a little sceptical. It does seem a broad brush approach for such a diverse range of special needs children, including children with autism. I'm sure some children really benefit from it, and certainly my friend's child really seems to be enjoying and responding to the excercises. I would like to try to begin fitting them in again, though, so we can at least say we properly gave it a go.