Christmas and New Year 2018

A Christmas decision

Logan and Caitlin were very insistent that we have Christmas at home, which in some ways is great – it’s so expensive to go away and not be able to join in with anything for Christmas, due to the sheer volume of other people being about. However, being at home for Christmas has never been successful (we had had 3 Christmas days with the children before this one; the first two at home, the third at Bluestone). The only one successful in that time frame was the one spent at Bluestone. So we had to figure out what was different about being at Bluestone (aside from, you know, the obvious of being on holiday) that we could influence from the perspective of being at home. We came up with a couple:


People and expectations: In going away we had taken them away from family and friends and as a consequence lowered their social commitments and expectations. “Ok. We need to replicate that” we thought, so we arranged to have a Christmas Coffee afternoon – mid December. We would have our presents ready for everyone, if people wanted to exchange presents with us (which we discourage as the kids are easily overwhelmed, can’t let go of the stuf they have and don’t have room for more, and frankly, they don’t need presents, they need presence). We would bake a load of goodies and take them with us, setup mulled wine and mulled apple juice, and other drinks. People could just drop in and go off as they please, but we’d be there for like 4 hours. some activities for the kids and it’d all be great. So. That’s what we did.

Presents: Presents were spread out, family had given us presents before we left for Bluestone, we couldn’t take them with us, nor could we fit in ours from one another so we did that exchange before we went away. So Christmas Day was just presents from Santa only and was VERY low key. So we had to aim for that. So we arranged that any presents we had been given before Christmas would be opened prior to Christmas Eve. Then Christmas Eve we would exchange our household’s presents so that by bed time the only thing left would be Santa.

Christmas Eve

And actually – those two things were the only significant differences we could identify. So we did our Coffee afternoon, exchanged presents there. Then opened anything the children got there slowly over the course of the week that followed. We had a special early Christmas planned for Christmas Eve, whereby they’d wake up and get their usual Christmas Eve box (new PJs or an outfit, some new underwear and some hot chocolate ready for bed time routine). Then had a normal morning, followed by a special lunch and a treasure hunt (with picture maps) around our house to find presents that we had bought (and hid) for them – they would open each present in between the search meaning that they had time to run around looking for the next one reducing their anxiety and emotional behaviour. It really worked.

After exchanging presents, the children had a bit of free play time to burn off some energy and emotion. Then as they know I love Harry POtter and had bought me the Harry Potter Trivial Pursuit game, we play that and some other games until it was time to have PJs, get Santa’s treats ready and get up to bed. Every Christmas Eve we hide a new book under their pillows (a tradition we had arranged to hopefully have a little fun)… this year it was a tradition that was finally remembered by them and they were so excited to get through pre-bed time routine to get to their beds . Bed time went smoothly (with the exception of Caitlin feeling a little worried about someone coming into our house whilst she is sleeping… we reassured her that no one apart from us would be in the house. We reminded her that Mumma frequently does things like magic-ing things into a room and she has no idea how they are done, in a similar way her presents would be magic-ed into the living room but offered her the opporunity to sleep in Logan’s room on a mattress. This worked.

Christmas Day

Christmas Eve I had made it very clear to the kids, excitement trumps everything. So no time was too early to ask if it was time to get up on Christmas Day. They would either be told “no, not yet, a bit longer” or in most likelihood “hell yes!”. As I child I was always up at 4am persuading the youngest child in the house to go badger the grown ups to let us get up for Santa’s deliveries. And, anxiety was low enough. For the first year ever I didn’t give up at 8 and go and get them (already awake but too scared to say anything) up myself. They called up at 6am “Mumma, has Santa been?” my heart beated joy “Oh, um… I dunno, why don’t you go down and take a look?”

Santa had been, and he hadn’t left much of his treats on the plate…

The excited screams sounded their way up the staircase. I was worn out, but very VERY happy. I could have cried happy tears in fact “they are doing ‘normal’ kid stuff… what is this?”

The Logan and Caitlin don’t like anyone being left out so Bruce and I have to make each other a stocking and the children had won a stocking at a Christmas Fair so we “had” to fill it for the dog… of course.

The day was very low key, after opening presents, we pulled out the sofa bed and chilled watching the 1940’s version of A Christmas Carol. Then had some breakfast and mostly did a lot of nothing. It was perfect. And ate some glorious food in between. It was perfect. We pulled off a Christmas at home. We know what we need to do now.

New Year

Normally for New Year’s Eve, we have an evening all prepared, we put the clocks forward 3 hours so midnight arrives at 9pm (much more manageable in this house). But actually, some friends were going through a hard time. They came and stayed over. The kids all played together. The adults all played board games and laughed. The kids fell asleep early. We got no photos. It was just immensely fun. A welcome break in the midst of a very stressful time. We loved it.

Review: Sea Legs Puppet Theatre

We are a bit late reviewing this as, well…. Winter in this house is just so difficult… but it’s important to me that we do this. So here it is, better late than never hey?

The children were absolutely desperate to have a birthday party, but it just wasn’t feasible; they are coping better with parties, but not with being centre of attention in groups. So I was trying to come up with a SEN/sensory friendly alternative. I came up with the idea that a story teller/puppet show would be a great alternative. A little bit of research and some questions asked in the correct direction, and Sea Legs Puppet Theatre was one of the companies shortlisted. A brief email exchange filled me with the confidence I needed to decide “yes, this is it!” So, it was decided that they would come to our gathering to perform “The Selfish Giant”.

Rob was very approachable from the outset and was understanding and accepting of the needs any of the children may have. And very clear about what we could expect on the day, 2 hours to setup, 45 minute show, 15 minutes to meet the puppets afterwards and then up to an hour for take down. He brought along some rugs, and had already suggested we setup some chairs for the adults. We brought along a load of scatter cushions too for added comfort.

The set was really quite spectacular, the puppets were exceedingly intricate and the show was very well thought out. Everyone loved it, adults and children alike. Since the party, we have had so many comments over how different, but great, it was to attend a birthday celebration where even the adults were able to be involved, entertained and happy to go back and repeat the experience. 25 3-14 year olds, all of whom were fully engaged for the entirety of the performance. They were all very excited to have the opportunity to meet the puppets at the end. All the children have since expressed how they loved it (all of them), and several have asked when the next show is. Which is entirely a possibility for the coming year.

The light never goes out…

… you know the one at the end of the tunnel. It’s still there, it’s just that the length of the pathway, the obstacles in my way and the stability of the road aren’t clear. And at the moment it feels very unstable and full of obstacles. Relentlessly so. I’m quite literally treading water with my energy, my body, my health. And I keep thinking “oooo, just gotta do x, y and z and then I can recover a little….” but then the list is scuppered by major dramas. Just to list a few to give an indication:

  • Major roof leak (on one section of the single-storey part of the house only)
  • Car drama – headlights stopped working, intermittently, couldn’t recreate scenario at the garage. Eventually got something sorted.
  • Logan’s sleep saga continues… although now we are back (begrudgingly) with Melatonin and this time we are actually seeing some more benefit than last time; it definitely hasn’t fixed the problem, but we are seeing more “good” nights (where there’s a more solid chunk of sleep).
  • Caitlin’s muscular issues have been fluctuating, and where we have had a more steady constant stream of physical activity, I am less able to predict what’s going to be too much (I am sure our super steep stairs do not help, some visitors actually get anxiety about coming down them).
  • Colds and Flu – I have SOOOOOOOOOOOO not been on top of our immunity routine. And although we have a very good diet, it just hasn’t been enough. Cue a series of colds, and what we think was the flu on the last batch.
  • Bank drama – 6 months after moving (5 months after no access to old house/address change) the bank decided to “accidentally” post some of our account details to an old address (I had been into the bank to change it personally as they wouldn’t do it over the phone/couldn’t online). So needless to say I am changing banks.
  • Therapy – each session seems to actually be leaving the kids feeling vulnerable afterwards and having an impact on behaviour for a week or two afterwards now. Which is good in some ways (it’s working, but it’s exhausting).
  • Uni – has started back up again, and I may have bitten off more than I can chew all things considered this year, but I’m the kind of person that makes things happen. I always have been.

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However, despite all the drama and exhaustion, we now have someone coming in to do the deeper clean of the bathroom, en suite and kitchen. And a volunteer from a wonderful charity called Home Start coming in to just give me a bit of human interaction once a week (and eventually we are hoping it’ll lead to respite for me, when the kids are able to trust her enough to listen to her whilst I am out of the room for long enough for me to just go read a bit, or soak a bit), and access to regular groups where the kids can just be themselves without me having to care.

AND on top of that, I actually got some me time. with a friend… a mini spa day (by mini I mean, no treatments just use of the facilities and a relax for a while). It was at the St Pierre Marriott Hotel and Country Club. I will not waste my time with a review – I will just say: we arrived to find staff talking about their desire to “get out of there” and travel and work cash in hand on the fly as they do, with little interest in us actually checking in/any queries. The facilities were tired and outdated. When we got in the jacuzzi, it was hard to relax for all the unregulated children running around screaming, and when they finally left I had a headache and couldn’t be bothered any longer. Got out to try and have lunch, and despite the bar being less than 25% seated, they told me food would be at least a 45 minute wait. Don’t even bother going. It wasn’t all to waste though, as I went by train so I got to enjoy listening to music on my MP3, whilst alternating between reading my Kindle and checking out the views!

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Regardless. I am here, plodding on, taking the obstacles as I come upon them. Some days life feels like it is moving forward. Some days it feels as if the weight of the world is against us (or rather me) and that I am fighting against it alone. But now it feels like we are balancing out a bit more, like the days moving forward are happening more. Still largely over shadowed by fighting and grief, but with a more constant presence of underlying peace and happiness.

 

A new page… and our summer so far

So, many reviews have been going up – I have been concentrating on getting those up to date – so it’s clear we are up and about, though still not back at full energy capacity. However, whilst the summer holidays are in full swing, we are making use of friends and family being out and about to actually see people. After all we have had so many months of stress, illness and mundane priorities. Time for some fun.

I think, from the reviews it’s clear what we have been up to on the trip-front, but at home things have been a little different too. We have been doing less sorting and more fun, family tasks, learning and getting more into a fuller routine. We found a cleaner to try and take some pressure off me… yay! I don’t need to clean our bathroom and en suite any more – that’s so much pressure removed, and strangely just the removal of those jobs has expanded my capability to get back on track enormously. Plus, after some more regrowth in the garden, we are slowly getting back on top of things.

 

That said, shortly after moving in, we found out that part of the roof (covering the part that’s connecting the main house to what was an out building) is not fit for purpose. It’s just glass that has been tar painted (and cracked) with plasterboard underneath. The longer we have been here, the more its weakness is displayed in terms of leaks – with each rain fall we find that we have new puddles inside, in the direct vicinity of electricals and their outlets. But thankfully, a roofer has been arranged, and we are on our way to having that fixed.

 

In the interim, we have been trying to have fun, trying to establish more of a routine and doing less menial tasks (such as sorting/emptiyng boxes, clothes etc.) and more fun tasks like baking we actually have an oven that can bake through without burning the outer! YES! And things such as crafts like sewing and also using the Spielgaben.

 

Which ultimately leads me to our new page. As we go about the daily challenges of family life and home education, we encounter various different bits of equipment, kit, objects etc. that we use. I decided that (when searching for these and coming up short on reviews for some) that I would start making reviews of the new bits we get. It is here.

That pretty much concludes our update for now. I summary, we are up and about ;things have been straggling in the house (and we need a new roof); we are doing crafts and bits; we have a new page.

Adoption: why does it create burnout?

As per my previous post (Burnout) my body is so burnt out that a cold turned into a chest infection. 2 weeks later I’m still getting over it and knowing my body well and how it feels I can see I’m going to be battling chronic fatigue now. This is the result of secondary trauma, compassion fatigue and a support system that doesn’t work. Adoption isn’t hard because of the kids. Adoption is hard because of a system that’s too weak to support the children’s needs.

They are only entitled to basic medical needs on NHS (if they needed A&E through accidental, or if they had a medical problem like anaemia or asthma etc.) Anything mental health, sensory, behavioural and developmental must be done through the Adoption support (because the NHS won’t even look into until they know it’s not ado[tion related). Which means, £5000 is their cap on therapeutic support and specialist equipment. £2500 is the cap for assessing. Meaning they can be assessed once in a year. If one of them needed a specialist car seat (which we are on the border of needing) it costs £2200+. So we’d have the option to self fund that £2200 bill, or to halve our current therapy which is only 8 sessions per year as it is.

Adoption is not hard because of the kids. Adoption is hard because of the fights you have to go through to get their basic needs met. Because of the circles you run in trying to prove whether their needs are medical or adoption related (don’t even go there if the two overlap – dyspraxia/DCD+ attachment related development and sensory issues).By the time you finish the fight, there’s pretty much nothing left for the children who need all of your energy and attention to help them heal. Do you fight, and neglect them whilst you fight? Or do you not fight, and neglect them by not getting them what they need? Either way, they are left neglected in some form. It’s not right.

The children are being removed through experiences of neglect, and in turn they are being setup to be neglected in some way shape or form. Us adopters aren’t robots or machines. We have a finite amount of energy. Things shouldn’t be made so difficult for us to help the children. I made the selfish choice to adopt, to become a mum. But I did it not knowing they’d be refused all they need. It is torture to watch. Exhausting to live. And isolating.

Things need to change. Not just for us as a family, but nationally, as I know we are just one in a picture of thousands of families in similar situations. We didn’t mess our children up, we are trying to pick the pieces up, unsupported. It’s like trying to push toothpaste back into a tube that’s still being squeezed. It’s not working.

Burnout

So as you could potentially fathom from my last post followed by my subsequent silence, I’m quite burnt out right now.

This is what happens when you are primary carer to one, or more (our case obviously two), highly traumatised children. When there is no relief, when they cannot be in school and cannot cope with you away from the home. When the “early intervention” hasn’t happened and you have been left unsupported. When you have been pushed to send them to school to find out retrospectively, that your gut was right, you now have professional input stating they “really cannot even begin to cope in a classroom right now, let alone learn in or socialise in a school environment”.

I had a cold 2 weeks ago, it developed and turned into a chest infection that I am still in the process of getting over. Caitlin had it and struggled for approximately 12 hours. I promote a really healthy diet that means their immune systems are very good (as she suffers with glue ear, and when she’s ill goes deaf and as a consequence gets anxious and self harms).

When you are burnt out as a carer, literally the smallest cold can completely topple your world.

I had to take a step back from everything. Even parenting right now is borderline too much activity in the day. I will be back, but more rest is required. I am on the up now, which is why I have had time to write.I have not disappeared and the chaos family isn’t disbanding. I am just exceedingly burnt out and ill as a result.

Back soon.

I don’t want to mum today.

Almost a week of this stupid bug, kids with anxiety so high that even just trying to get to breakfast is an exhausting battle, and having to get through the trauma of the nights (nightmares really high again for one child, crying/defending self in sleep, the other just flat out refusing sleep or help).
 
I don’t want to be a mum today. I just want to hide. My body is in agony. No one sees this side, everyone just sees my “charming, well behaved, polite and compliant” children. I apparently make up their struggle, or exaggerate it to my own end. “How could they possible be as bad as [I] say they are”. Trauma that’s how, they hold it together in front of everyone else to protect themselves. But at home, in the place they feel safest (not safe, just safest, they still don’t have any reason to trust me to be the mum they need me to be). 
I am burnt out. Caitlin had the same cold as me. For her it lasted 12 hours. For me, a week later it’s still going strong because my body is too exhausted to fight it. So yeah, once again I am sat here, out of energy, depleted of the patience and tolerance I need to get through the day and it’s not even 9am yet wondering how the hell any of us are still going to be breathing at the end of the day. 
I hope I can turn it into a positive day, despite knowing right now I don’t have much hope. But I thought it’d be worth sharing this in the moment because these are the times no one sees.

30 Days Wild – Day 23

Well, it was a bit hard to take in nature and wildlife yesterday, as we spent a large majority of our day on motorways and major A roads. Caitlin has jumped from being just under 17kg to 18.7kg in amongst this house move drama. This means that she’s too heavy for her car seat harness, so would either need to go to being secured only with the seatbelt (but she can’t even stay up right in a chair due to her posture), or a seat with a harness that goes up to a weight capacity higher (25kg/36kg).

So, knowing this day was coming I had searched some things (but had been holding off in the hopes that the OT report would be through as they were supposed to be making some recommendations). But clearly we weren’t meant to wait.

We booked in with the Disability Specialist at the In Car Safety Centre in Milton Keynes. We were lucky enough to manage to get a same day appointment, within a feasible driving time. We were greeted well, they had a little room the children could play in at the side, and the shop floor was clean well presented and inviting. And the assistant knew her stuff, and didn’t push for u to get the highest priced seat. We wound that the seats were a little higher in price than we could have found them by shopping around. But the service we received, and the knowledge that we were going away safe not “sold”, more than covered the difference. (They do not know I am writing this so, no I am not writing positively for any benefit, reward or compensafftion).

Anyhow, it was hard to enjoy the sunshine whilst we were sat on a motorway with it beating down on the car. And by the time we got home it was a bit late to be getting out and about. However, we do have the Collins Michelin i-SPY books, so we were looking out for animals, birds and trees.

30 Days Wild – Day 22

Yesterday was one of those awful days where nothing seems to go right, a chain of one after the other incidents leaves you feeling at a loss… and it was only 9:45 by this point – culminating in me swallowing a lip bar, which really was the tip of the iceberg. We had had wet pants (and carpet because there was just so damn much) meltdowns and arguments, stubbed toes… the works by this point.

So when we’d finally eaten breakfast at 9:45 I got the children to clear the living room and get out sheepskins, blankets and cushions, and we grabbed the Magic Faraway Tree Collection, which frankly has been sat on the shelf for ages waiting for the right moment. I used to read them to Caitlin at bed time when she first came to live with us, but aside from that, they’ve not been read. After a chapter, or two, the kids had a nap (much needed) and I sorted some jobs out.

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But afterwards, we collected ourselves, set off to the garden and enjoyed leftover past from Thursday night for lunch, and headed out to listen to the sounds of the wind against the trees.

 

 

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And then proceeded to play in the sandbox whilst I read a few more chapters of The Enchanted Wood.

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Whilst enjoying the sunshine and listening to the sound of the breeze on the tree above…

30 Days Wild – Day 21

“Our birds”.

It’s kind of strange, having only owned our new house for only 2 months, actually 2 nights away means we really appreciated the sound of being woken by “our birds”. I don’t mean, we have birds as pets… we don’t. I mean the birds that visit our back garden (we really should make an effort to identify them) but they have their own song, and it seems to have settled into us. Being woken by them this morning was so much more gentle and inviting than being woken by the foreign sounds of the nature at the campsite.

They are officially “our birds” now. No other bird song can suffice. We love you birds. Keep up the good work.