Raising Seth

Seth gets a lie in

noreply@blogger.com (Unknown) — Wed, 05 Feb 2020 08:18:00 +0000

It's Wednesday morning and it's time for Seth to get up. His tv is already on and curtains drawn. He's sitting up in bed.

I remove the safety sides from Seth's bed and swing his legs round so they are dangling over the side. Seth grunts at me. I stop and look at him: he is quite pale. I ask him if he feels poorly and if he wants to stay in bed. In response he tries to lift his right foot back onto the bed, but it slips back. He tries, and fails, again. I tell him that if he can manage to get himself back into bed then he can stay in bed. Seth renews his efforts and manages to get traction with his right foot and shift himself fully back round onto the mattress.

I change his pad in bed and, at this, Seth gives a squealy peal of laughter: he knows he's getting a lie in. I know this means I'll have to take him into school myself, late, but it's so worth it.

The fragile path we walk

noreply@blogger.com (Unknown) — Mon, 25 Nov 2019 16:51:00 +0000

This morning I was getting Seth up for school and he had an absence seizure. He was sitting in his shower chair and he suddenly looked to the far left and went very still. He started working his mouth (like he's sucking on a sweet) and drool is just pouring from his mouth (which actually I'm grateful for because at least I know he's not going to choke). He stays still for roughly a minute and then folds completely over, asleep.

I now have a semi naked boy asleep stuck on a chair. I call to Craig who is getting ready for his first day of placement on his final year of being a student mental health nurse. He's already excited and anxious and I'm cursing that he has this to contend with this as well. Together we dress and carry the still sleeping child back to bed.

I switch into practical mode:
Call school transport and let him know they won't be needed.
Walk the dog while Craig is still in the house because if Seth isn't going to school this is the only chance I'll have to leave the house. I'm thinking about the shopping I was planning to do, Seth's medicine I had planned to collect, the jog I was going to attempt later.

Soon after Craig leaves, Seth wakes after being out for 45 minutes and responds happily to me asking if he wants to go to school. So we start the morning again and I take Seth into school just an hour late. All good, except that when we arrive he falls asleep again and I'm wondering if I shouldn't have kept him home.

I drive to the supermarket and park. As I'm walking to into the store it hits me: the tightening of the chest, the shortening of breath and the panicky feeling whirling inside me. I want to sob and collapse but the shopping still needs to be done so there's no time for that! I erect the steel exterior and make it back home intact. I actually stood staring at the donuts for a full minute until I managed to drag myself away! I crawl into bed and sleep for three hours. I lie for another hour unable to move, thinking about all the things I haven't done and the medicine that really has to be collected. This finally gets me moving and I'm up and getting on with things: Seth will be home in less than an hour and I don't feel anywhere near capable of cooking dinner and looking after him. But of course I do. He's tired but happy to be home.

I know objectively that the seizure this morning was but a blip for Seth. I don't know how it really makes him feel but it doesn't cause any long term problems and apart from a dip in appetite he was fine (although for Seth, a dip in appetite is quite a thing!!) But seeing him so vulnerable and broken never fails to flaw me. I know that other children have it a lot worse, as do their parents. But when it comes to your child, objective facts don't really come into it, do they?!

My Dad

noreply@blogger.com (Unknown) — Thu, 10 Oct 2019 20:03:00 +0000

Seth had a lovely relationship with my dad. Both my mum and dad loved Seth and spent many hours looking after him, enabling me to go back to work. They visited his school, were proud grandparents at christmas plays and were well known to his class. They called themselves 'Gramps' and 'Grumps' and in return Seth was always happy to be driving up to their house or hear their voices. On entering their house he would always look around the living room, showing interest at the pictures hanging on the walls. This was at a time when Seth didn't often respond to people or look up at all.

Then my dad was diagnosed with bowel and liver cancer, along with parkinsons disease. And their lives became consumed with appointments, operations and then chemotherapy. My dad didn't have the energy and ability to do so much with Seth and my mum was busy caring for my dad. Not that they weren't still in his life but they could no longer have such a hands on role with a growing disabled boy.

The liver cancer was too vigorous and my dad succumed to it two years ago. It's front of my mind at the moment because we've just passed the anniversary but also a friend of mine has just lost her dad.

At the time I tried to explain to Seth that he wouldn't be seeing Grumps anymore and it saddened me that he would no longer have him in his life. But it saddened me more that, whilst he enjoyed spending time with Grumps and had a special connection with him, I had no idea how much he would be aware of his absence. I still have no idea - but he still enjoys seeing my mum and she still loves spending time with her grandson.

My mum collected money at my dad's funeral and donated it to Seth's school. This modest sum was dropped into a much larger pot that paid for an extension and sensory room. I can't help but wish that 'Grumps' had been painted in small letters somewhere in the room as a lasting reminder of a devoted grandad.

Intensive interaction

noreply@blogger.com (Unknown) — Mon, 15 Jul 2019 18:26:00 +0000

A few years ago a very lovely community learning disability nurse helped us with Seth's communication. We were really struggling and she taught us to sit quietly with Seth for just a minute. If he looked in our direction that was him inviting us to engage with him so we should then copy his movements or sounds, allowing him to lead the play.

At the time this simple excercise was ground breaking for us. I learnt that I didn't have to keep thrusting toys in front of Seth to ensure he was 'playing' and being stimulated at all times. That simply sitting quietly with him was enough. He got attention on his terms and allowed him to take control and lead what happens. My relationship with Seth really improved and he became calmer and banged his head less, and in turn I became calmer.

These days I don't need to consciously think 'now I'm going to do an intensive interaction excercise with Seth'; it happens naturally throughout the day and our communication has improved exponentially. One afternoon after school I laid down next to Seth on the sofa and attempted to video us. It's rubbish quality and at the beginning I have to turn the camera round because I couldn't find the 'selfie' option but I still think I captured a lovely few moments between us.

My biggest fear

noreply@blogger.com (Unknown) — Sun, 02 Jun 2019 07:01:00 +0000

I was at a hen party this weekend and one of the games we played was 'truth or lie'; a lighthearted game where you are asked a question, you answer and everyone votes whether you were answering truthfully, or not.

I was asked what my biggest fear was. I made something up because the truth would have put a real downer on the mood.

My biggest fear is that my son will outlive us.

I've been told that it's likely he won't. Adults with learning difficulties have a lower life expectancy due to medical conditions not being picked up. Also his epilepsy could worsen as he gets older and be life threatening and he may develop scoliosis which would impact on his breathing. Of course, with his difficulties eating he could also aspirate and choke.

Cheery - and that's not my greatest fear. I mean that is pretty bad. If/when we can't care for him at home ourselves it's likely he will have to go elsewhere and that's when the odds start stacking up against him.

But the thought of outliving Seth is what really starts to get the panic growing in the pit of my stomach. With the latest reports of abuse in care homes being back in the news, it brings into sharp focus how vulnerable Seth is - with his biggest advocates gone who will be there for him, protecting him and loving him?

Yeah, I answered 'bees' to the question.

Seth is a champion walker for sports day

noreply@blogger.com (Unknown) — Thu, 16 May 2019 18:14:00 +0000

Today, Seth had his school sports day.

He had a go at everything and for most of it he was in his walker. We did the egg and spoon race, threw bean bags and played skittles. The bit he liked the most was going off for his own lap though.

Click on the image below to watch the video!

Thoughtful action

noreply@blogger.com (Unknown) — Tue, 07 May 2019 15:42:00 +0000

We don't normally stop and think about how amazing our brains are with their ability to process, make sense of all we see, hear, touch and feel, articulate thoughts and move our bodies. The signals that fly through our bodies at lightning speed are mind boggling and we take it for granted that we can act on our intent within milliseconds of formulating the thought.

Seth's brain simply doesn't work like that. Since he was born the damage to his brain has prevented those signals to move through the normal paths. For example, a large part of the brain that processes the images he sees, simply isn't there. That's why he is visually impaired. It's not that he can't 'see' but that he doesn't understand what he is seeing. It's called cortical visual impairment. But as with all things, practice and excercise can help. So being in a darkened room and encouraging Seth to follow moving lights, helps to stimulate his brain and I suppose works the muscles of his eyes too, keeping them active. Encouraging him to look at things will help him to understand familiar objects. He learnt to recognise his cup and spoon early on!

Seth never used to look at us in the face and would still at a sound, rather than looking towards it. But over the years, especially the recent few years, Seth has been looking towards sounds and towards us until now Seth will actively look me in the eyes and turn his head around to watch us walk into a room, or across it. For the first time at his last appointment at Great Ormond Street Hospital, last month, Seth 'tracked' a toy. Every eye appointment we've ever had, someone will hold a small plastic toy in front of Seth's face and move it to the left and right, and up and down to see if Seth will follow the object with his eyes. He never does. However, this time he did! He showed interest in something that wasn't food (!) and looked at it as it moved. I wanted to leap around the room with excitement.

The brain damage means that Seth struggles to make his body do what he wants. It also means he takes a while to process what is being said to him and then respond. Forming words is so complicated that a noise has to suffice or he can try to sign or gesture. The natural pathways that these signals normally take are damaged in most areas so new pathways have to be forged. So for years nothing seems to change but then suddenly Seth is showing a greater awareness and actively responding. In comparison to others, this is a tiny incremental developmental step but for us it's huge. By continuing to talk everything through with Seth, give him opportunities to make choices, supporting him to move his body and showing him patient, loving encouragement we can see that he is very gradually gaining his voice and actively moving parts of his body with intent - whether that his eyes following a plastic toy or reaching to touch his cup to indicate he wants a drink.

Joy and privilege.....?

noreply@blogger.com (Unknown) — Thu, 18 Apr 2019 19:27:00 +0000

In my last post I said that being Seth's parents is a joy and a privilege and that is true..... but it doesn't often feel like that. Certainly recently it has felt more of a burden.

It's an ever decreasing circle. Yes the system provides us with support. But it only gives us the bare minimum it can get away with. 'Austerity' has ensured this. I see diminishing physiotherapy and occupational therapy support at school. At home we receive the mandatory social worker visits; she listens, make notes and leaves. For a year I've told her that we are struggling and need more support with Seth's care needs but they fall on deaf ears. I know that social workers in our county are stretched to breaking point and it's clear that we are left to our devices because we are 'coping'.

Seth needs help with every aspect of his life so there is no let up from when he wakes to when he goes to sleep - and often after that too. After eleven years, that takes a toll. In fact I recently saw a campaign by Scope raising awareness of parents being sent home with their new child born with clear difficulties with absolutely no emotional support. That was us! So not only are you dealing with being new parents but your dealing with the knowledge that something is very wrong with your child...and you are just left to sort it out. Yes, there are the medical appointments which, certainly in our case, left us reeling with increasingly alarming news, but no emotional support whatsoever.

This isn't a moan but a recognition. Back to this past year I've gradually found it more and more difficult to care for Seth without getting angry with him. I've resented my life and what is expected of me. I managed with the support of Craig and my friends (and my lovely dog!) but I think the death of my dad knocked me harder than I had realised as well. The balance tipped and one morning I simply couldn't get out of bed. I've spent all this time telling our social worker we needed help, but because we were still 'coping' nothing was done. I had to break for her to take me seriously. I called her, broke into tears and suddenly she was coming round to discuss 'our package'.

As I recognised my depression, even whilst I was feeling low and tearful, I felt how strong my love for Seth was. And the anti-depressants are working really well. I've been on them for two months now and I feel better than I've felt in a really long time. They've helped me put everything back into perspective. But to get the help Seth needs I have to dwell on all the bad stuff. Getting his Education, Health and Care plan (EHCP) updated ready for moving to secondary school in September I had to ensure that every element of his needs are documented and chase up all the professionals to write a detailed report to meet those needs. Then when he got his school place, I had to complete a mammoth sized set of paperwork again detailing all of Seth's needs. To get the social worker to take me seriously I have to detail how difficult our lives are. It's always dwelling on the burden. And it's an emotional drain.

But in reality, Seth isn't just his disabilities. And in my very low moments when I considered what life would be if we hadn't had a child at all, I realised that I am who I am because of having Seth. It's deepened my love for Craig because I know how amazing he is and made me appreciate the experiences that life brings. And I damn well appreciate every smile, every laugh, every development step and every time Seth looks into my eyes or responds to my presence. That is a privilege.

I'm back after a long break

noreply@blogger.com (Unknown) — Thu, 11 Apr 2019 07:06:00 +0000

Seth is coming home from respite today, officially now known as a 'residential short break'. Last night I was telling Craig how I missed him not being home, yet this morning I'm feeling the familiar dread of his return.

Seth is now 11 and my beautiful, full of laughter and wonderful character, son. He is also the growing child whose care needs are constant and whose moods can switch with no warning. I war with my dual emotions quite a lot!

I took a break from this blog initially because I found that I was feeling negative about everything and seemed to just be constantly moaning. Since then I've often found myself reflecting on experiences and writing a post in my head but didn't find the time to actually get in front of the keyboard with the 'headspace' to actually share it.

I've been told by people that they valued reading my blog posts because I was sharing feelings and experiences that many other parents have and they enjoyed seeing them shared 'out loud'. Others gained an insight into what it's like to be a parent of a disabled child. But mostly I'm blogging again because I've been suffering with depression and anxiety and I've now succumbed to anti-depressants. I need this blog to articulate how I'm feeling and get it off my chest. When I share how I'm feeling it lifts from my shoulders and makes it easier to keep standing upright - because being Seth's parent is a burden that Craig and I carry. However, it's also a joy and a privilege and I am so proud of him.

I'm not ok

noreply@blogger.com (Unknown) — Thu, 16 Jun 2016 22:05:00 +0000

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.

How I got carried away with a holiday memory book

noreply@blogger.com (Unknown) — Thu, 14 May 2015 09:18:00 +0000

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.

Getting the balance right

noreply@blogger.com (Unknown) — Sat, 11 Apr 2015 21:45:00 +0000

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 :)

Seth is toilet training me

noreply@blogger.com (Unknown) — Sun, 05 Apr 2015 07:00:00 +0000

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.

Taking the time to notice the little big things

noreply@blogger.com (Unknown) — Wed, 25 Mar 2015 00:03:00 +0000

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!

That's teamwork

noreply@blogger.com (Unknown) — Wed, 24 Dec 2014 00:45:00 +0000

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!

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

noreply@blogger.com (Unknown) — Sun, 14 Dec 2014 22:20:00 +0000

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.

Trips to the hospital and lovely cuddles

noreply@blogger.com (Unknown) — Tue, 11 Nov 2014 23:02:00 +0000

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.

Respite

noreply@blogger.com (Unknown) — Fri, 10 Oct 2014 18:09:00 +0000

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?!

A week of extremes

noreply@blogger.com (Unknown) — Sat, 27 Sep 2014 14:35:00 +0000

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!

Seth sees colours!

noreply@blogger.com (Unknown) — Mon, 15 Sep 2014 11:25:00 +0000

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!

Let down by Occupational Therapy

noreply@blogger.com (Unknown) — Sat, 30 Aug 2014 21:18:00 +0000

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 :)

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

noreply@blogger.com (Unknown) — Sun, 24 Aug 2014 22:04:00 +0000

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.

Eye tests at the Great Ormond Street hospital

noreply@blogger.com (Unknown) — Tue, 15 Jul 2014 19:46:00 +0000

Today we went to Great Ormond Street Hospital. It was a referral we had requested for more detailed eye tests. Seth has had annual eye tests since he was was born virtually and he was officially diagnosed with 'immature' eye sight, as part of his global development delay. However, these tests haven't told us anything really useful and are really only intended to show any change year on year. We know that the problem lies with the brain damage Seth suffered at birth and how the signal from the eyes is interpreted by the brain. The tests did tell us he had stigmatism and the glasses were diagnosed to help with this in the hopes it might help him see a little. & we think that they have improved his focus.

Seth's eyesight is definitely intermittent. He uses his vision more: he will look for sounds, rather than just stilling to listen but he will often still turn his face away from sounds so that he can focus on his hearing. He looks into our faces loads more and we get lovely eye contact very often, but similarly sometimes Seth will appear to completely ignore us, not even vocalising in response.

Anyway, today we spent the afternoon at GOSH. The specific test we were after was a bit like his EEG's, in that they glued electric sensors to the back of his head and a couple on his face. They then rolled a big tv up in front of him with Something Special playing on it. On reflection, maybe I should have got them to move it closer because as I told them, he doesn't watch TV at home, he listens to it. The TV programme continued to play as they overlaid the picture with different patterns, and flashing lights. The sensors then recorded what signal was being sent back to the brain from the eyes. It can tell how good the signal is and whether one eye is stronger than the other. It was really hard to get Seth to look at the screen at all (which is pretty telling in itself!). We literally had to hold his head up with another woman shaking noisy toys in front of the screen to try to get Seth to look at it. Seth looked up only enough for them to get a basic reading. Not enough to be able to go into the detail of which side was better than the other, but enough to show that the signal that is getting through is really not good at all.

We now have a proper diagnosis that Seth is severely visually impaired and we will be getting a certificate in the post to prove it. On the plus side, I think this means we can claim for a free tv license. Also, rather more importantly it also proves that when we told the CDC (Child Development Centre) that the cognitive tests they carried out when Seth was almost two were ridiculous and their conclusion that his cognitive ability was of a 3 month old was not taking into account his visual impairment is now vindicated and his cognitive ability could well be pretty good. On the not so good side, we've just done this Aided Communication course in the hopes that he will learn to eye point to signs in order to communicate, and maybe one day use eye pointing technology to speak for him. & it's unlikely he can actually see the detail on the signs.

International day of dance

noreply@blogger.com (Unknown) — Sun, 29 Jun 2014 13:14:00 +0000

This weekend we went camping. It wasn't wholly successful; we went to the Peak District and of course I've never been in the Peak District when it wasn't raining and it didn't disappoint.

We arrived quite late Friday evening, Seth was overtired and couldn't wind to sleep for hours. Then he woke up at 5 and I don't think he went back to sleep. So he spent the day very tired and grizzly, so much so that after tea time I was so worried about a terrible night that we packed up and came home. I don't know, given that all he wanted was sleep it might have been fine but I wasn't sorry to wake up in my own bed this morning.

Seth chills out in the tent

Despite how this sounds we actually had a fun time. The rain actually held off in the afternoon and we went into Bakewell. And that was when we discovered it was International Day of Dance. At least that's what the signs said and every corner we turned, there was different styles of music and random groups of people dancing. Naturally, Seth loved the music. The first group we encountered were line dancing, the second were swing dancing and the third were a group singing South African songs. Seth had a good bop and I found myself dancing my way round the town.

We haven't been put off camping. We've just learnt a few more lessons for next time. :)

The importance of breathing

noreply@blogger.com (Unknown) — Mon, 23 Jun 2014 12:42:00 +0000

Last week we spent 3 days in East Grinstead, Sussex, at the Advance Centre learning the Scotson Technique. I learnt about it from a friend, who in turn learnt about it from a friend. We camped near by using my parents campervan at Sumners Pond Fishing & Campsite and I heartily recommend them. Fab facilities, 2 disabled showers and really friendly staff.

At the centre we learnt about how the respiratory system develops in a new born baby and how children with neurological problems suffer with underdeveloped systems, especially if they need to be on ventilation. If a child isn't mobile their already suffering respiratory system suffers further as the normal small, movements that a 'mainstream' baby makes slowly builds their lungs and diaghrams. So a child born with difficulties falls further behind in a vicious circle; not getting the oxygen supply around their body they need to their brain and joints, not having as much energy to move and so not increasing their oxygen supply etc etc. Their underdeveloped diaphragm can be seen in physical abnormalities and posture; flared ribs, sunken chest and high shoulder blades.

So the science I understand. Seth has these physical attributes. They took photos so we have a benchmark later. Linda Scotson has a son with cerebal palsy,she developed the Scotson Technique on her son and she attributes his ability to not only walk but run marathons on the work she has done with him. She says that it will help posture, speech, mobility and eating. Linda also explained how the diaphragm aids digestion. The technique is gentle, slow rhythmical pressure on different parts of the diaphragm. You use a rolled up flannel so that it is soft and prevents you pressing too hard. It needs to be done every day and takes over an hour to complete the routine. We have to go back in 3 months to review Seth's progress and learn new elements to the routine, and we do this for the next couple of years. A charity paid for the cost of our first sessions and we have to apply to another charity to pay for the rest.

It all sounds pretty amazing and there is anecdotal evidence of real improvement for children after treatment. The big question of course is 'was it this that helped, or would they have improved anyway'? It's the 6 million dollar question, isn't it! Linda is completing a PhD on her technique which is due to be published and peer reviewed but this is the main problem with any therapy like this. You don't have a base group to compare findings against to be able isolate this therapy as being the cause of change. I do think that Seth is making enormous leaps forward at the moment. I think this is because of the epilepsy medicine either helping him to sleep and so giving him more energy in the day and/or calming his head so he can concentrate more. He's also loads more mobile; he uses his walker to get to and from the school bus and we try to walk with him round the house as much as possible. This is turn will be improving his lung capacity, blood and oxygen circulation and energy. We will just have to take note of where he is now, and again in 3 months and take a view whether this new therapy has caused improvements then.

On that note, I have 2 videos of Seth walking up and down our stairs to and from his bath. Unfortunately, I chose to wear a dress on this day and had to hitch it up to walk back down the stairs with Seth- I apologise now for the ungainly view of my legs you are forced to endure!

Anyway, I'm not advocating the Scotson Technique but it's worth checking out. Linda reckons that it is helpful to all children who were born with difficulties, can be started at any age and is also helpful for children with autism. After all this, on Friday we had the second day of our communication course. We practised using aided communication and discussed how we could use it and develop it with our children. Another useful day and by the end of this week my mind was blown and I was knackered.