Thursday, 14 May 2015

How I got carried away with a holiday memory book

We went on holiday 2 weeks ago. We got permission to take Seth out of school and went to Pickering, North Yorkshire.

Normally our holidays are fairly laid being holiday time for Seth he is normally flaked out. However, because this was school time and we had bigged up what a multi sensory experience the week would be for Seth we felt obligated to live up to that expectation.

So we went to York, Whitby, Scarborough, explored Pickering Castle, took a steam train ride and went on walks. It was great and apart from a couple of meltdowns, Seth loved it.

A day in to the holiday I realised that Seth should take back to school a memory book of what he had been up to, so I started taken photos to put in it. A day later I decided that if it is truly to be a memory book for Seth then a diary with photos would not be enough. So I started buying tactile items from the shops of all the places we visited; an orange rubbery penguin that lit up from Scarborough sea life centre, a leather, embossed keyring from York a wooden knight from Pickering Castle and, of course a rubber vampire bat from Whitby.  This idea was getting more expensive!

Then when we were on Scarborough beach I had the bright idea of recording the waves.

I followed this with a recording of the sound of travelling on the steam train. It was easy using my phone but how was I going to add them to the memory book? So I ordered a pack of small 10 second recordable switches, reasoning that they would come in useful one day.

A couple of days after returning home the switches arrived through the post. Then I realised what a monster I had created! It was all very well thinking up these great ideas but now I had to spend hours writing it up, sticking in the photos and working out how to stick the buttons into the book! I ended up using lots of tacky glue and selotape - it'll probably fall apart after a month! And how to write on one page when you've just stuck a lumpy penguin on its other side! Good grief - no one has ever said that being creative is one of my strong suits and yet I keep throwing myself into increasingly complicated projects. Like when I dressed Seth up as a pirate and tried to turn his wheelchair into a pirate ship.

Oh dear!

And so the memory book has been created and Seth took it into school to show it off. They were duly impressed. The sound is a bit tinny and only just recognisable, and you hear a steam train every time you close it! But hopefully I will be able to go through it with Seth and he will enjoy touching the objects and listening the sounds, and maybe remembering our holiday.

Saturday, 11 April 2015

Getting the balance right

Seth can walk if his upper body is supported. This means that as long as you are holding his hips or arms he can propel himself forward. Whilst using his walker at school he can take the lead when moving through the halls. His visual impairment means that he still needs a guiding hand so he doesn't go straight into walls though!

At home Seth has started being able to choose what he wants; a couple of times I have misinterpreted his body language thinking that he needs to go to the toilet. However, once being helped to his feet (which again as long you are standing behind him supporting under his arms he will bring his knees up so his feet are flat on the floor, push up through his legs and then walk his feet backwards so that he is standing up straight) and walking him out of the living room, he has stopped at the door, turned away and walked to his chair where he eats his meals, with me behind trying to keep up! The 2nd time this happened I had moved his chair and so he sat on the floor where it should have been. I helped Seth back up and asked him to find his chair. He walked around the living room until he came to it whereupon he lifted his foot trying to step up into it.

Seth is now so strong and confident on his legs but his upper body muscle tone is still letting him down preventing him from being able to balance. Every so often I test this though. I figure if he finally learnt to sit unaided he should be able to do the same when standing. So sometimes when it feels like he might be ready I let go of him. I'm ready to catch him as he topples but I want him to feel what it is like to give him the opportunity to find his own balance. And on Thursday during Seth's trampolining class he did it. For at least 10 seconds Seth stood completely unsupported. It was breathtaking. This evening I tried again and after a few failed attempts Seth again stood for several seconds alone. He even took 2 tiny steps forward before I felt he was going to topple and took back hold.

So now I have something new to work on :)

Sunday, 5 April 2015

Seth is toilet training me

We moved into this house over 2 years ago because there was a room downstairs that could become Seth's bedroom and a downstairs toilet. This is a fabulous old house full of character and we love it.

Slight problem has been that in the winter Seth's bedroom with its single glazed window and 3 exposed stone walls and a boiler that isn't powerful enough to fully heat the radiators in this furthest room is freezing.. In the summer on a hot humid night this is the best room to sleep in though! So Seth temporarily moves upstairs to his 'winter residence' sleeping in the guest bedroom/study.

The landlord finally agreed to fit secondary glazing last month and spring has arrived so it should be time for Seth to move back downstairs. We are even getting the downstairs toilet converted to a wet room next week so everything really will be set up for Seth.

And yet I have spent several days lugging his bedroom furniture upstairs and converting the other room back into a study. Why? Because last month Seth started calling out during the night. Not crying or talking but a definite  change of tone that at 4am was waking me, dragging me out of bed and causing me to carry him onto the toilet..... Where he did a wee! I was so proud and clearly so was he. This happened several more times and that was that. It's more important to have Seth close at hand at night and so the permanent move was made.

Since then of course whilst Seth has been calling out and I'm getting him on the toilet, he won't wee. So I'm basically going back to getting up in the night just to change his nappy! Seth thinks its all very funny. Sometimes the nappy is obviously freshly wet but sometimes its dry and Seth seems distressed. I'm sure on this latter occasion Seth wees once his nappy is back on. I'm hoping we get back on track so that its worth my bleery eyes in the morning.

I'm not sure what the long term plan for all this is though. During the day Seth is also communicating better his toileting needs. But whilst he can't stand or walk by himself then he is still reliant on someone noticing his subtle signs and then assisting him in time. 

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.