This is an old post, my how far we’ve come since this was written, Lewis is now diagnosed with ASD, elements of ADHD and SPD with significant anxiety levels. I still find it amazing to look back at past posts, to a former me, not knowing the future. Thank goodness for this blog, my safe haven, my sanity…. [11.05.17]

 

It’s 04:19 and I can’t sleep. I’ve just come down and fired up the laptop in defeat. The only way I know how to get this elephant off my chest is to type…and it’s been a while now since I did.

Okay, so this blog and website is predominantly about the gluten free baking that I do for my 11yr old daughter and therefore for the whole family, but in truth the blog (or rather an earlier from of it in Blogger) was about my journey towards getting better, stronger and more positive in order to support my family in the ways a mother and wife should.

Life’s a drama, gluten free doesn’t have to be….well, here’s the drama bit;

………’Wish I could turn back time,

to the good old days’………

That’s the sound that rang out from Beth’s phone in her room on charge. It was 03:27. After gathering my thoughts and trying to decipher whether I had dreamt it or not I heard movement from the next room. On investigation Beth had also woken and thankfully so, she’d had a hypo in her sleep and was soaked through. Change of bedclothes, stripped bed, hypo treatment and Beth was tucked back up in less than 10 minutes, Think that’s a PB! After eight years this kind of thing just comes naturally now, so why the elephant on my chest when I returned to my bed?

You’ve guessed by now that this is not a real elephant I hope? As pets go, we’ve had a few oddities but I draw the line at elephants. I’m talking about the actual pain in my chest at the moment. It’s crushing at times. No need to call 999, don’t panic, it’s not life threatening! I’m talking about anxiety. We have a lot of it in this house at the moment and quite frankly I think it’s a crying shame you can’t harvest the nervous energy it produces, we could easily power the house for a year were that possible!

The previous night it was Lewis’ turn. He came in just gone midnight; ‘I’ve had a bad dream’. I asked him what he’d dreamt;

You know me and Dad were smashing open the coconut today? Well I dreamt about that about two weeks ago, in my dream a piece of coconut shell hit me in the eye. Today when I hit the coconut a piece of shell came up and hit me near my eye. I often have dreams that come true but sometimes they’re not as bad as the dream.

Interesting, I though. But where’s the nightmare part? He went on;

Well just now I had a dream about going to PGL and I was at the top of the zip-wire and I fell off and broke my neck and died!

*stunned silence in a pitch black room* …

My mind just went blank, I’ve been starring at the screen for minutes, I either cannot remember what happened next, my body has just realised it should be in bed right now and temporarily rebooted my mind or, and this is the more likely scenario, I went into auto pilot on hearing Lewis’ dream. I vaguely recall a conversation about how Lewis normally loves the zip-wire and that he’s going to have a fabulous time on the school residential trip, and the next thing I remember is tucking him up in bed and kissing him goodnight!

If you’ve read the About Us page and seen some earlier posts, you’ll be aware that Lewis suffers with anxiety too. An inheritance from me that I hate to have passed on. Lewis has a challenging time ahead of him, he finishes Year 4 in the summer and will be moving up to Middle School to join Bethany. I can feel my shoulders and jaw tighten as I type this bit. This is going to be a massive move for him, to leave behind the security of a personal teaching assistant and possibly the most supportive school this borough has to offer. They were excellent with caring and supporting Bethany and they’ve surpassed expectations in supporting Lewis. Thanks to CAMHS, Lewis is medicated (I know there are opposing views on this and I’m fine with that, I can see it from both sides, just be aware that this was the last resort after my little boy started to hear voices and was threatening to kill himself) but recently, the medications effectiveness seems to be waning as the pressure in Lewis’ mind builds.

Friday was not a good day! We had an appointment to see the psychiatrist to review medication and have a catch up. Normally I don’t tell Lewis about these appointments, I simply come and collect him, this way he cannot fret about it and tie his nerves in a knot. On this occasion I tried a different tactic. I wanted to give Lewis the chance to think about what he might want to say at the appointment. To articulate, as I know he is only too capable of doing, what is going on in his little mind. That idea backfired dramatically.

To be fair, it was due to circumstances out of our control.

As I raised my finger to buzz for entry at the school reception. I got a call on my mobile. It was the psychologist whom we were also expecting to see. I was told that the psychiatrist had been called away on pressing matters and that the appointment would have to be rearrange unless we wanted to see him on his own. I sat down on the doorstep to the school and we talked for a while about how Lewis was getting on and concerns that I had and we agreed that it was be a shame to take Lewis out of school now and to rearrange.

I stood up and buzzed at reception.

On speaking to staff I felt that the best option was to let them tell Lewis he was staying in school for the afternoon. That way, he wouldn’t want to come home with me when he saw me. On my exit the headteacher, whom I have a great deal of respect for, asked if I thought Lewis would be okay with it, I shrugged my shoulders, smiled and said ‘fingers crossed, maybe see you soon’.

It was just 20 minutes before I had a call from the school. ‘Sorry Rebecca, he’s gone over again’. Lewis had clearly not reacted well and jumped the school gate. It’s been a while since he’d done this and we thought we’d conquered this panic behaviour with drastic measures by calling the police to talk to him about leaving school property. The two officers had been wonderful with him and despite the tongue wagging that had ensued from parents who didn’t understand or care it had had the desired effect. But now, Lewis was back over the fence.

I drove to the school, at the legal limit!!! To find Lewis sat on top of a goal post on the green next to the school, his TA and Headteacher were lurking in the bushes! It brings a smile to my face thinking back, and it must sound bizarre to someone else, but there’s very good reason for this. Legally the staff are not allowed to pursue Lewis, a child in this situation does not think, they act, and knowing Lewis he could bolt at any moment straight into the path of a moving car. Instead, this way, Lewis just sits, or paces until I arrive. You see once he’s over the fence he has no intention of going anywhere, it’s a knee-jerk reaction, on the other side his panic subsides and he’s left with regret and a whole new bunch of emotions he has to deal with, one of them being…how do I turn this around and get back into school?

I’ll cut to the happy ending but not until I divulge the reason Lewis broke his promise to the police about not going over the gate again.

I’d been preparing myself all morning to go to the meeting and then YOU cancelled it

Okay, so something had been lost in the message and Lewis had thought I’d cancelled the appointment but the point is, he couldn’t cope with the knowledge that he had an appointment in the first place and he’d built up enough nervous energy to fuel a rocket. Once his TA told him it wasn’t going ahead…he exploded!

The happy ending, Friday is cinema night in our family, this means pizza, a weighed out bowl of sweeties so I can carb count for Bethany (the pick n mix method was tried and tested and didn’t work out!) and a family film….and lots of cuddles on the sofa.

…It’s 05:33, time to put the kettle on. The elephant has shrunk, be gone anxiety, back in your cage!