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Saturday, 2 July 2016

Thursday, 16 June 2016

I'm not ok

This morning I wheeled Seth to the school bus, came back inside and then cried so hard I wretched.

I get Seth ready for school in the mornings: carry him to the toilet, or assist him to walk there, and encourage him to use it while I get him dressed.  Then I carry him downstairs, or assist him to step down himself, to the kitchen where I feed him his breakfast in his wheelchair. His patience has improved and being in the kitchen helps so that I can talk to him as I'm microwaving his porridge (with added maple syrup and cinnamon), pouring his squash and drawing his meds.

He's really good at reaching for his spoon and I help him bring it to his mouth.  Sometimes he'll randomly slam his head back between mouthfuls.  Sometimes he'll let it all dribble back out but for the most part we enjoy this time together.  But once it's over and I'm trying to syringe in his epilepsy meds or offer him his drink then the real shouting and head banging often begins.

And I don't know why. I've tried getting him out of the chair for a cuddle but most of the time that just means he's screaming in my ear. I've tried leaving him to calm down but his head banging just gets harder until he's crying more because he's hurt himself. I've often got the door open to keep an eye out for the school bus and goodness knows what the neighbours think I'm doing to him!

The worst time is when he stops midway to chuckle before resuming his tantrum. Today wasn't the worst morning but it was the straw that broke my back. Literally - I actually pulled something when I was coughing and it's niggled all day.

This behaviour isn't confined to mornings, or me. Craig has it when Seth comes home from school.  And it wears away at him, too.

Normally I just shove it away and get on with my day, but this morning it stayed. I have felt sick, shaky and tearful all day. The recent harrowing events in Orlando and now in Yorkshire are not something to be shrugged off either.

And then I realised how important this blog had been for me and what an emotional outlet - therapy no less - it was. So I am going to make more effort to post regularly and lift some of this sadness that is weighing me down.


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 back...it 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!