A little update

So I know it’s been obvious I have been trying to get on top of things both at home and on the blog, and I kind of feel like I have been achieving that. But I thought a little overview of what is going on would be great.

Well, after months of having way too much on my plate, life has started to slow up a little. Unfortunately as I slow down, the months of doing too much has started to catch up with me, and if I thought I was exhausted before, BOY was I wrong?!?!

But it means I am getting onto more “normal” stuff. Like the fact that I am noticing we haven’t been drinking enough water. Stickers are always a good incentive for my children, and so we have made some weekly sticker charts – each day we have to put up a sticker per bottle of water we drink. It’s just to make us more aware that we need to drink… but so far it’s working. We have been advised about 2 litres a day/adult, 1.5litres for Logan and 1 litre for Caitlin, so we are working off these guidelines.

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We are also prepping “normal” stuff like factoring in international competitions – like the World Cup, realising this starts today we have setup our wall display, done a draw to see which team in each group is “ours” and are ready with our wall chart to keep a track of the scores. It’s not so much about the football, it becomes a talking point for cultural differences, a flag identification game and a responsibility to keep track of something. But it also becomes a way of learning healthy competition, these two don’t deal with losing very well and some of their reactions make me wonder what the encountered in their birth family. But this takes the competition out of our control, so we can’t be held accountable for the win or loss, and yet we have fighting talk and fun.

On the normality front, we have also been able to get to the opticians. Caitlin has never had vision problems but Logan and I wear glasses. On the way in she’d made a comment about hoping she needs some, which I didn’t think about… but when it was confirmed that Logan needed new glasses and we’d sorted his, she had a bit of a wobble about wanting some herself. In short, she refused to leave the shop until she had found some. I explained that she didn’t have bad eyesight so didn’t need some, just like Logan doesn’t need a wheelchair and she does – that wasn’t good enough. She was very adamant. So I had a little chat explaining money and how £65 just because she wants something isn’t really within our capabilities, let alone something I would teach her. However, if she’s feeling that left out I would see if I could find some without prescription online. That settled her, and here they are. They arrived yesterday, she has only taken them off to shower and sleep.

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On Monday we are going to be heading to a therapy retreat to do some intensive work as a family. We have no expectations of what we’ll get out of it, but hoping for some positives.

30 Days Wild – Day 11

Due to Caitlin’s aches and pains today, we have just been at home. We did manage to finish the painting of the playhouse porch (we laid a new floor on it). And managed to sort the toys to go in the playhouse. So the kids now have a play area outside, that is fully operational! WOO… we just have so make it safe for them to take the walk up and down.

However, we did look out at the garden for a while and watch the birds coming and going in the shrubbery lining the fence (the neighbours have suet balls there). It’s a rubbish photo as it’s taken through our extremely dirty window (cleaning them is on the list, but I only have 1 pair of hands).

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We also spent some time quite amused by a fly who refused help, guidance and encouraging comments in getting out of the house, and instead proceeded to seemingly get fed up with flying into the same door frame on repeat.

So today, our widlife has been birds and flies.

Aching muscles, processing pain.

It’s hard for Caitlin to understand pain. Well, her and Logan both in all honesty, but her more so. When she first came to live with us I remember her being jabbed with 2 needles and not even knowing if it had happened. She genuinely asked me if they had done it yet. Or when she fell over, she might cry as a shock reaction, or even have a panic attack if it triggered a violent body memory. But she never could express, or recognise the pain.

Slowly through melodrama, lots of plasters and overreactions on her behalf, and lots of sensory input about soft touch. She’s started to recognise these things. So, when she was younger, and her mobility and muscular issues were still an unknown problem, she wasn’t able to alert anyone. However, she’s able to tell us about her aching muscles a little more now. Not always in time for us to be able to prevent her getting too bad, but significantly more than previously.

This weekend, she tested her climbing frame, she had a few falls, she was running back and forth, we have steep stairs. It all adds up. I look at it like someone on a diet – if you have had a fat slab of cheesecake, you can’t really get away with a sneaky glass of wine and a bar of chocolate, hips don’t lie! 😉 For her, each activity would be representative of food. Walking on the flat, whilst wearing supportive shoes and her orthotics is relatively low impact. And whilst she cannot walk on the flat indefinitely, it’s not the most taxing. Going up and down stairs is like a having something out if a box of chocolates, in moderation is ok. Rock climbing, soft play, the park… These things are all like the fat slab of cheesecake, you can technically have the other bits with them but “hips don’t lie” (in this case her muscles) and so she’s woken up today on the wrong end of activity binge.

This morning we have had tears, screams, drama. Today is going to be low activity, low impact. Wheelchair restricted when out, sofa/bath restricted at home. These are the days people don’t see. That people say I exaggerate for my “life of luxury”. I’d give up any of the things to not have to see her suffer, to watch her be included at the same level as her peers. But for today, I’ll just give her what she needs. Rest and nurture.

A new baby – not ours

We get very excited about babies. Very.

And news came to us, just before we were moving house, that a new baby was coming. Well, the news came the day we exchanged contracts in fact. So it was a memorable day for sure.

Anyhow, we like to make stuff, so the kids set to work on what they wanted to do for the new bundle. They made a felt picture each, in a photo frame, for the baby’s room.

I, being me… home education, children, uni degree, house move, blog, health issues, therapy commitments. Clearly not satisfied I have enough on my plate, commit to constructing a quilted blanket. The children were heavily involved in the quilt in its process, from choosing and pairing the fabric, to being my fabric/thread assistant, or even to just getting me a drink (we have a Tassimo machine, they are happy to make hot drinks roughly every 3 seconds of the day).

Well, eventually we ended up with a quilt, many blisters, very dry hands, sore fingers and a sore bitten lip… but a quilt nonetheless. It may have some wonky stitches, but it was a labour of love and excitement, and I am hoping valued more than something shop bought. It was definitely not a cheap option either, I could definitely buy something for a third of the price, but it’d have less thought and effort put in. And, at cot bed size, will be perfect as a play mat for now, and if it lasts, could be utilised as a quilt on a toddler bed.

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Adoption Support Fund and Therapy

Well. 2 years of fighting. Lots of energy wasted on professionals sending us around in loops. Lots of damage added by not having the correct support in place and we finally got funding approved. Intervention offered: Intensive family therapy.

It was approved at the end of February, we had the whole course of therapy approved (8 sessions,  year’s worth of sessions). Fantastic! But there was a catch. The funding is only applicable for that financial year so… as close to a year’s worth of therapy as we can fit into one month as possible please…

It was an intense month. A very intense month. Very exhausting, even just the sessions themselves. Take away from it that it had emotional repercussions, that I was trying to sort out a mortgage, a complaint through the Property Ombudsman and home educate to highly needy children.

But it’s over, we’re moved and we’ve been informed that this year’s funding is approved and we have funding approved for further assessment with regards to their sensory needs too. It’s looking like life is finally moving in the correct direction for us (not always in a straightline, sometimes zig zagging) but going forwards and not mostly staying still or moving backwards.

The Bank Holiday Hangover

This phrase has a slightly different meaning to me than it did before. Before it had obvious roots in alcohol and late nights. But nowadays, here, it has to refer to the post-change-in-routine behaviours that are so abundant the day after.

Unlike the change in routine that occurs around going on holiday, the Bank Holiday weekend sees us staying at home and avoiding the crowds that seem to amass everywhere. It’s like, being Bank Holiday weekend means people have to act like it’s a stay-cation and they become tourists in their own area or just a little further afield. Which is great, people bringing money into the local economy can only ever lead to positive growth for the local economy, and with growth comes security and development right?

There are some negatives come with it… things like litter but I’m teaching the children the right way to deal with that (dropping litter is only acceptable in Mumma’s car, if Mumma is driving and you can’t safely reach the car bin – everywhere else is unacceptable). Or traffic/noise pollution, but hey, without better public transport you’re not gonna change traffic, and with fun often comes noise but it’s not permanent or long lasting so…

But the biggest negative for us comes with the children. Busy places, loud places, public alcohol consumption and boisterous groups. All of these things anxiety triggers for the children. And whilst anxieties like this will need to be worked with in the future, right now they can be avoided and the children have so much they are working on, so we will avoid them, or only have them in small and controlled doses.

But the hangover. After 3 days of “hiding” we get the repercussions of our choices. The built up tension of being stuck in a confined area with one another for more extended periods than usual. Perhaps it’s the release of anticipation of something bad happening (and not coming to fruition) mixed in a bit too. As well as the overwhelming surge of emotion that comes with a sudden realisation of freedom.

Either way, the Bank Holiday Hangover involves no alcohol for me (I couldn’t handle a traditional hangover on top). But is just as physically draining. And I know we are not alone, I hear the same things from other adoptive parents and parents of children with additional needs.

Raw, unfiltered, unedited: Sleep deprivation and manipulation.

Another night of no sleep with a child refusing to, in order to manipulate and control. A fear response. They aren’t in control, they are not safe, an adult cannot provide safety.

So manipulate adults in to getting what you want (note, the want and not need there). What they need is sleep… not this strained and stressful rubbish night after night. What they need is a sense of security in the knowledge that it’s safe to hand over control to an adult, not maintaining control and manipulation. What they need is understanding, compassion and time.

How as a human being can you be expected to provide a constant source of nurture and attention, patience and tolerance, empathy and understanding when you are so utterly and completely burnt out?

I don’t know the answer, I search for it daily. I wish I knew it. I want to be that person. But I feel you have to almost be a robot to not get weighed down by the exhaustion of the lack of sleep. The mental exhaustion of having to untangle these levels of trauma daily. The physical exhaustion that comes from the mental exhaustion of the day. Then the exhaustion that comes from other people and lack of understanding or compassion (or even will to understand the situation, or accept your words at face value). You can’t provide that nurture as a robot though. So in short, you can’t provide it. So you are setup to fail surely?

There is a term “good enough parenting” the name of the person it belongs to escapes me, I’m tired and I have no energy to search… This is an “in the moment” post. Raw, unplanned and developing with my thoughts, but the name Winnicott comes to my mind. Effectively you don’t need to be perfect, you can be flawed, be human, and not provide more than they need. But I do question it in our example. I mean, I’m confident that you don’t have to be a perfect parent to be the best type of parent… But it appears that even if we are perfect 99% of the time, the level of trauma our child has experienced means they ignore (or can’t retain) what you HAVE done, just what you haven’t. And it gets stored up and we’re held to ransom over it.

Would have helped if we’d had early intervention with therapy. But the Adoption Support Fund application wasn’t forthcoming, or rather the application process was not only not forthcoming but convoluted and shrouded in politics that it took ages to get approval once we finally did get it underway. I can see how therapy may help. But, it’s quite late in the day to start. I for one need to go in fresh and motivated. I’m barely motivated to poop when I need to, cause “effort”, let alone attend 3-4 hour intensive and exhausting therapy sessions. But hey, that’s the state of Adoption & Mental Health Services these days right?

And self care could help with the motivation I’m told… Well, if so many professionals hadn’t messed up consequently leading my child to see, even though they can’t trust me wholly, I’m definitely the person that understands them the most, so keep them feeling the least vulnerable and the most safe. Perhaps I’d be in a position to separate and go fill my cup up. But, alas, here we are.

In the meantime I’m left like a tyre with a slow puncture, after almost 3 years of deflating I’m more flat than inflated. But I get a little bit of air added now and again, not enough to fill me back up, but enough to just keep rolling a little bit longer, sometimes depleting that top up and a little more before the next lot. Rolling onward, focussed on the destination and ignoring the miles still to go. (Cause I would just explode if I had to think about it).

Anyhow. This is how it is to think and feel when living these moments. My raw, uncut thoughts and feelings. In my exhaustion. Just here trying to provide a little insight (not complain) over what it means to parent a child of complex needs and such trauma.

Can I not just divide myself into several persons?

NB, This was also written before my laptop broke so posting retrospectively

Breakthroughs, transitions, ups and downs… busy chaos. Pleasant and shifting. Time consuming and exhausting. But sometimes, glimmers of the things that could be closer to the “normal” we dream of, and hope for.

Our life goes like this at times, we just have no contact with the outside world as home life spirals into a chaos-at-home rather than a generally scheduled-up-so-extremely chaotic. In fact, I only wrote the words above before I had to stop. Apparently, caterpillar shaped balloons can produce more hyperactivity than Skittles (or Rowntrees Randoms – they are a good example actually, these two are not allowed those… ever again!!). Anyhow, it means they are currently running around my bedroom whacking each other with the balloons, ultimately leading to a trip up and fall… and a knee being rammed into the wood of my bed.

And… then I stopped again for a full 24 hours. We played several games with the balloons and laughed til we fell off the bed (not even exaggerating – me and both children, several times). Then suddenly we realised it was just before “home time” for Bruce, and I am not sure how it got started, but the kids love hiding from him just before he returns home… but there is a catch – the three of us must hide together and giggle whilst he is looking; in the last week alone we have hidden in the shed, on the high sleeper, under the piano and in my wardrobe.

We try to find our fun in the moments we have, and that is sometimes the reason for my absence here. Not just for all the madness and stress. But to actually take some time to enjoy the good. I get stuck trying to overcompensate for the negativity that can sometimes erupt here. But it is exhausting, especially when so much falls to one person. To me. I sometimes sit here wondering when/if it will be possible to split myself into different pieces, with each piece spawning into a full sized version of me, controlled by my mind (the place that will remain whole, and undivided); to divide and be able to conquer the sometimes overwhelmingly impossible task of parenting the trauma my children have endured. And then I remember, if I divide myself for the menial and troublesome, I also divide myself for the positive… and those moments I want for myself.

It’s not a competition!!!

I really struggle with how competetive people seem to think life is.

The whole idea of pitting kids against each ther in school. development and achievements. The competivity between parents/carers of “oh, well ‘x’ was doing that by the age of ‘y’…”. These aren’t anything to do with ensuring your child gets credit for what they are doing. This is about the parents saying “check out my parenting skills”… “this is what I did…”. And this is bad enough, but when someone is struggling, rather than having empathy there seems to be a need to display how their problems aren’t as big as your problems.

We are human, things happen we struggle, we vent, we get down. But is that a reason to be all “well, I don’t know why you’re moaning… everyone has issues and quite frankly mine are worse”?

I don’t think it is. I think it’s about time the parenting community just stop with this idea of better and worse. Not least because it doesn’t example good behaviour to the kids, or consider that everyone is different… but also because really, what does it achieve? Do you feel better putting someone down? Does it make the person feel better? Does it solve any issues? Nope, I can’t say that it does.

When I see people going through it this is my contingency:

  1. Is there anything I can do to help?
    • Yes – offer the help
    • No – go to point 2
    • Perhaps, I  am not sure – tell them you are there and ask if you can do anything to help
  2. Would it feel awkward, like you are just being nosey, if you were to tell them you are there for them?
    • No – well tell them then, don’t downplay their problems, don’t say “it’s normal” or “it’ll pass”, offer them something supportive and tell them you know you can’t help, but you are there if they need you.
    • Yes – just shut up and pass on by…

You can’t help in every circumstance, that’s for sure. But what is certain is that you have a choice to not make someone feel worse.

Even if you think you know what someone is going through, consider that you don’t and be kind. Just remember that suffering and endurance really are relative experiences. And just because you have travelled the same path, doesn’t mean you’re carrying the same weight, experiencing the same weather conditions, fighting with the same energy and motivated with the same levels of support.

Let’s stop this hate. Let’s stop this judgement, this competition, this downplay of suffering, this isolation. And let’s instead spread compassion and unity and empathy and empowerment.