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.

Joy and privilege.....?

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

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.