Seth gets a lie in

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

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

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

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

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

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

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.