To my children…

Going through my drafts I came across this. Written 297 days ago. In 297 days I’ve had the honour of watching these four wonderful individuals grow and develop and love. I’ve watched Emma become an even more beautiful young lady (even if she does play dirty when we play football!) who’s love for others is unwavering. I’ve watched Charlie suddenly turn into a gorgeous young man with a passion for ice hockey that is in every fibre of his being. Jack has started to come into his own and is one of the most interesting individuals I’ve ever met and Ava is growing in confidence everyday, becoming an even funnier monkey. I am blessed to have these humans in my life and I am so excited to spend the summer with them and yet again watch them continue to grow and develop. I love you always. 


2015…

To my babies,

It’s the night before school starts for the year and I can’t sleep. As you know, it’s partly due to fear. How will Jack manage? Will school let him down? Am I doing the right thing? But I need you to know that it’s more than that. It’s all of you and the tangled mess of emotion spinning tirelessly inside me. So many emotions, but two are always at the forefront. Yes, one is fear. But the other is pride.


I am so proud of you. Spending the summer with you, watching you, listening to you, just being with you has given me so much. How you all meet life head on with enthusiasm is such an inspiration. Your attitudes are always positive, everything is always fun. The people that you have become over the last year are just beautiful. I do feel sad that I’m loosing you to school for another year until our time over the summer clicks round again, but I’m so excited to watch you grow again. You’ll find “love you” notes in your bags and a smiley face on your banana; but don’t be cross with me. One day you will walk a step ahead and I won’t be able to catch you, so while we still walk side by side, let me love you xxx 

Some of you will know that a few months ago we took the decision to de register Jack from school. It wasn’t a decision that we took lightly but it was one that we both agreed on. There were many reasons but the final straw for us was that Jacks anxiety had gone through the roof. He was unwell with tonsilitis or ear infections on a weekly basis. I’ve never seen so much antibiotic pumped into someone. 

His anxiety was to the point that he refused to spend time with anyone but me. He didn’t see his dad for weeks on end. Things that once weren’t a problem were now becoming mountains that he couldn’t even look at, let alone climb. He insisted that we took an alternative route to the doctors surgery so that we didn’t have to go past school, we weren’t allowed to play on the park opposite school. In a nutshell, school wasn’t to be mentioned. 

Over the last 6 weeks or so I’ve seen a dramatic change in Jack. And so have the people around him. For the most part he’s happy. So very happy. I honestly can’t remember the last time I saw my child this happy. Of course he still has struggles and moments where he can’t cope but he’s really stable emotionally right now. His eyes sparkle, his fun has returned. He’s cheeky again and I’m realising just how much I’d missed my little monkey.

With that comes the realisation of just how much the education system was destroying him. His zest for life was almost non existent when he went to school. He was on edge all the time, closed down, in his shell. Stressed and aggressive. 

Jack is an individual with some really quirky sides to him. Jack is interesting and, more importantly, interested. He wants to learn, he wants to absorb information; he wants the freedom to just be him and to follow the path that he chooses. He doesn’t want to fit a box and in many ways he can’t fit a box no matter how hard he or I tried. Jack is Jack. 

Jack is blooming right now. His numeracy is beyond where it ‘should’ be, his play is coming along nicely (he now plays with toddler toys appropriately and,to a point, in an imaginative way!), his passion for knowledge is on fire. With him directing our learning (and making use of YouTube ) he’s telling me things that I didn’t know before! He’s a delight to be around. His literacy is coming along but he struggles in this area. He’s learnt to write and recognise mum, dad and his and his siblings names and we are working on some basic high frequency words. He loves having books read to him so I’m confident that when he’s ready developmentally that this too will click. It’s about going at his pace and not forcing things. 

When I look back, 6 months ago he was a wreak and I spent my days subconsciously concerned about how his day would be going. Would he manage to eat in school? Would his nappy be changed as often as it should be? Would he feel safe and listened to? Would his wishes be respected or would he have to fit that all important box? Was he happy? The list was never ending!

 The decision to home educate Jack has been the best decision we’ve ever made but it was emotionally difficult to get there. Pulling a child out of a system that seems to think that it’s the only ‘right’ way to educate a child was challenging. Teachers trying to change your mind, effectively telling you that they knew what was best for your child and you didn’t was very hard. Looking back, I can 100% say that the last few months have, for me, cemented the fact that I know what’s best for my child. Just as every other mother out there knows what’s best for her child. Im so excited to see what the next few months bring for my happy little chap! 

  
It’s been a funny few weeks for this little dude. The level of anxiety rushing through his body has been (and still is) unreal. All he’s wanted to do it stay home, refusing to spend time with his Dad and on the odd occasion when he has he’s come back seeking approval and comfort. Clearly an emotionally confusing time for him and also for me. Watching as the light of my life becomes clingy and unsure is very hard. Trying to figure out why is even harder. 
For months now his temperature has randomly spiked, usually riding at 40•. Trips to the doctor bring the usual words (that every parent loves) “it’s a virus”. Sore throats, temperatures,  leg pains, night sweats that now require a towel and more recently tummy ache (and dreadful nappies) are par for the course at the moment. Maybe that’s why he’s off balance? Maybe not? Having a child that can’t communicate emotions and feelings is dreadful. Unsure of whether they need the doctor, you either find yourself there all the time, just in case, or not until it’s apparent that they are really poorly. Either way as a parent you feel bad.

As I’m writing this he’s told me that I’ve been good today, so I can have a marble in the jar (a reward system they have in school), so I must be doing something right! I’m sure that I’ll figure out what’s throwing him off soon but until then, I don’t suppose that anyone out there can read minds?! 

Time..

I had a chat a few weeks ago with a lovely girl from the Young Carers Team. We were talking about my eldest and how she often helps out with Jack and what things would make her life easier, more enjoyable, more normal. One of the things that came up was wanting more time with me when I wasn’t doing something. And so we got on to the subject of NHS services. Before anyone jumps down my throat, I love the NHS. It is thanks to the wonderful staff and incredible equipment that I have my children by my side. Everyday I am thankful for the amazing job they did and realise how blessed I am. But. There’s always a but isn’t there?! 

Every service that Jack has to access is a nightmare. From arranging routine appointments (why so difficult to organise?!), chasing people who say they will put things in place (who seem to be all talk and no action),  chasing what should be regular deliveries (that never are or if they are then they are wrong), to spending 3 hours on the phone to access a simple collection service, actually attending his appointments (which are always hugely behind schedule),  having meetings with school; they all take time. 

My eldest has been classed as a Young  Carer and will be taken out on trips with others in a similar situation. Which is lovely and a great opportunity for her to chat to people who understand how she’s feeling. But what she really wants is my time.

 I know it’s a simple view but if more money was being put into the NHS perhaps I wouldn’t have to spend 3 hours on the phone being passed from pillar to post when trying organising a special waste collection. Or maybe our regular deliveries would be correct meaning I wouldn’t have to spend hours chasing someone down who can sort it out only to be told that the quickest way to sort it out is to go down to the depot and collect it all myself. Maybe our appointments would be closer to being on time, meaning that I wouldn’t be so late home that I miss having dinner with her.

 Maybe if services were a bit more effective then all parents and siblings of disabled children would have a slightly easier ride. It can be a tough one at times and having to chase someone who still hasn’t done what needs doing, even after the 100th time of asking, makes it tougher. 

Maybe if things worked properly then the need for a Young Carers programme would be reduced slightly…Maybe if things worked properly, everyone could have their needs met…

Darkness…

I lay here night after night, staring into the darkness, willing the tears to stay hidden. The tears that feel as if they would never stop if I allowed them to fall. A feeling of heaviness inside. Slowly the weightlessness of my spirt feels as though it is leaving. I feel defeated. Sleep dances further and further away from me each night, mocking me as I desperately try to catch it. Mental exhaustion is evil. There’s no magic off switch for my brain and so our challenges swirl and crash like a storm raging in my mind. When sleep does come, it’s restless and broken. Woken with a jolt. Was that a dream or real life? It gets hard to tell some nights and so I fall back into a disturbed slumber. A little hand slides across my body, a nose touches mine, a sleepy smile. He’s awake. I hold him tight, breathing in his life and his love and I know that I will do it all again today and be his voice. I would die for him. 

We don’t fit…

This evening we attended a group. A group for children with additional needs and disabilities. I’ve toyed with going for months. Almost a year actually. I’ve wanted to go, but then, I haven’t wanted to. It’s been a funny thing to get my head around for some reason. So this evening we went, after I made  a promise to a lovely lady that we would. 

When we arrived I was pleased to be there; proud that I’d pushed myself out of my comfort zone and Jack out of our usual routine with no fuss. We were warmly welcomed by leaders that we know and trust. 

The children settled quickly, clearly sensing the love and acceptance in the building.  When I looked around I saw loving, amazing parents and fantastic children, but I realised that I was sad.

 I felt that we didn’t fit.

 I could give you a thousand reasons why I thought that. I still thought that when I started writing this post, but putting it down has made me realise something. We did fit. I’m a loving parent looking for support and my child is fantastic. We might not live with the same disability, we might not face the same struggles everyday, but we all face struggles every day. We might have different questions that professionals can’t answer but we understand the pain of not having those questions answered, or the pain of help being refused when we knew our child needed it. 

So instead of ending this post by saying that I’m still searching for our ‘fit’, I’m going to say that although we might not have found our perfect fit, I think we’ve found a perfect place to start working on the heartache that our journey into the unknown sometimes brings. 

He feels left out…

I don’t know how to start this post, nor do I know what to title it, but I’ll give you the ramblings of a mother who feels sad and lost right now. 

Jack started reception at the beginning of this month. Full time. Long days, leaving me with a void, a huge gaping hole where the light of my life once spent all his time. My life with just one at home had become easier than I imagined. No constant demands that changed with each second that passed. No screaming. No nappy changes. The ability to get things done. 

I thought he was happy at school. We are having major issues getting him to eat and drink in school and are getting no where fast, but I thought he was happy. I thought that he’d been accepted by his peers. In many ways he has and that brings me so much joy. He was star of the week this week and stood up in front of the whole school to collect his certificate. I was more proud of the standing up in front of the whole school thing than him being star of the week. But then last night he started to talk about school. 

He won’t eat or drink because he’s aware that he does it differently. He told me stories of him waiting until the dinner lady isn’t looking at him and then him sneaking out of the dinner hall, having eaten nothing. Hiding his snack in the classroom so they think he’s eaten.  He told me that although his teachers understand his speech, his peers do not. And then he crushed me. He feels left out. 

We’ve really tired to make mainstream work. Questioned the suggestion of a special school as we didn’t think he saw himself as disabled. But maybe it’s time to really think about that one. He feels left out. Those words will haunt me for a long while. 

Sibling love…

   
It’s a funny thing, sibling love. Take the two cherubs above. A day spent loving and hating each other in equal measure; but when one gets wobbly about something they band together, thick as thieves. Even in their deepest sleep, when one has been wobbly the other wants to be there.  It’s a constant, a sibling. An unspoken safety net. A link to your past, a companion, a trusted advisor, a secret keeper. But what happens when a sibling relationship grinds to a halt? Can time, and effort erase the void? How do you restart? 

I’ve found myself in this situation. My sibling went away when they were 11. Boarding school (through choice, not banished!) I was 14. Both of us just on the cusp of going through a period of development and change. We had very little contact during the 17 years they’ve been away. Partly down to life being busy, and on my part, kind of through choice. I’m the kind of person who would rather have no contact. Telephone calls and letters only remind me of who I’m missing. I find it easier that way. It’s probably very selfish of me but it’s my way of self preservation. 

My sibling returned to my life full time a little over a year ago. It was a welcome return filled with nothing but excitement and joy. They brought with them a spouse and a child. Two very special and welcome additions to my life. Two brilliant additions to my children’s lives. My relationships with the spouse and child have been easy, there was no history and so it’s been a clean page from which to start. My relationship with my sibling has been a little more difficult. 

17 years is a long time, people grow and change and suddenly we aren’t two children playing anymore. We are fully fledged grown ups, with responsibilities and lives that bring challenges and demands. The desire to be two children playing is still there. But how to re-establish a relationship with someone who is no longer the child that you remember? When I wasn’t looking my sibling grew up. And so did I. Two individuals with voices and opinions and very clear cut likes and dislikes. 

It’s been tricky. It is tricky. It’s going to take a while longer until we really find our place with each other. I’m sure that along the way we will bicker and butt heads but there was once a fierce friendship there. One that can be rediscovered and dusted off so that it can take pride of place again.