Enjoying some self care

No one will quite understand this unless the are a SEND or LAC/post-LAC parent… but I’ve been a bit pong-y today. I’m now fresh out of an uninterrupted 10 minute shower, where I not only got to shave what could only be described as “manly” pits, but I also washed my hair, quite literally 3 times. 3. Why? Cause I liked the way the suds felt in my hair AND I had the time to… and I used a fresh towel to dry myself. A nice crisp clean one that no dirty hands had dare touch. And shortly I fully intend to thoroughly brush my teeth for 2 whole minutes, instead of the usual flick around, job done.

May seem disgusting or TMI to mention. May even seem so trivial and small, bordering unpostable, to some. But in reality to me, it’s pretty major. These simple things are often overlooked for primary caregivers of SEND or children in/from care. Unless you live it you don’t really see the sacrifices, not even as a parent of children who haven’t faced trauma, or don’t have SEND. So I thought I would post, to reassure those out there with compassion fatigue, approaching caregiver burn out, you aren’t alone, I stink and am too hairy most of the time too… and to take your moment when you can, to enjoy that 10 minutes if and when you can, to destink. You’re worth it.

Review: Wye Cottage – Penrheol Self Catering Barn Conversions

I booked to go here with another mum friend for a quiet weekend escape to celebrate a birthday (see here). We wanted a quiet place to relax, preferably without children, not too far from home with the luxury of an on site or nearby spa or a private hot tub. From the descriptions we could see (and the reviews) Wye Cottage at Penrheol seemed just the ticket. In a rural location just outside of the town of Builth Wells, complete with epic views of the countryside and hot tub it was perfect.

We had booked through Airbnb (as that’s where we found it) which was straightforward enough. Claire sent us a message with information on how to find the property, where to find the key on arrival etc. Claire’s instructions were very clear and (along with the post code being set in the Sat Nav) the property was very easy to find. On arrival, Claire came out and greeted us, gave us a quick tour, showed us how to use the hot tub and wished us well.

The accommodation was well laid out and equipped and very comfortable. Knowing it was 2 mums coming for a break, they had set the one twin up as a king room with the beds pushed together and an insert between the beds. All rooms were en suite accessible wet rooms (with seats and disability supports etc.) The spaces within the accommodation were bright and airy with modern decoration that tastefully incorporated the character features. A nice addition was the woodburner (complete with a basket of logs and some fire lighting equipment). It helped with the requirement to relax (I do love watching flames).

Some sachets of shower gel were available for use, there were plenty of towels and toilet rolls and there were extra blankets available. Some extra nice touches were the drawer full of DVDs and CDs below the TV, and the cupboard full of board games and books. In the kitchen, along with the house and hot tub rules (nothing too outrageous, just really respecting the property and neighbours), we found that we had been left freshly laid eggs, a bottle of soft drink and home made welsh cakes.

Outdoors, at the rear of the property, were amazing country views, a large garden with patio and hot tub complete patio furniture and a bbq and fire pit. At the bottom of the garden, behind some hedging is a gate leading to the children’s play area.

Wye Cottage was a brilliant place to stay. I wouldn’t hesitate to return here again, whether as a family, or as a grown up couple/group. Would highly recommend this place to other people. It is by no means a party cottage, but is most definitely a rural haven.

Up and about

Well, despite low levels of energy, Nanny and Grandad have been up with Max (my brother, whose been mentioned before – he’s 10 months older than Logan). They have stayed for the week, which has both helped and hindered the recovery (mental health is up some, but physical exhaustion is down low, the heat is not helping).

But we have had quite some time out of the house. The weekend should afford me enough down time to update, post reviews and generally get back on top of things.

But I thought I should come on and say how pleasing it is to be off the sofa! 😀

Getting better: it’s hard.

When you are ill or suffering from post illness chronic fatigue, it is vital that you rest. But it’s really hard because somethings in life don’t just stop when you are ill. You still have to get on with things, and when you are primary carer to 2 complex children the days are very much arduous like a full time, demanding job. So “rest” isn’t really rest. You have to be continuously on your toes.

However, I am slowly getting up and about a bit more. Trying to push myself to get out of the house for an hour or two here and there. But I get tired very, very quickly. And because the children are seeing my health waver up and down, it’s been made all the more difficult; when they see me not being strong their anxiety and therefore hyper-vigilance rises. In turn, out comes the emotional behaviour.

Anyhow. When we haven’t been out and when I have been sofa bound, I have been trying to distract the children by getting them doing bits and bobs. They have been taking massive pride in being able to help with chores. They have been asking to do academic worksheets. They have done crafts, cooking and letter writing. A particular favourite was making slime (as per these instructions). And most of it has been achieved at a distance.

 

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.

Being “just a mum”: pitfalls of friendships

I find myself, quite often, in this situation where I am “just a mum”. As you have likely already read, I home educate and am a carer to my adopted children. They rely on me 24/7, and in the past 3 years I have perhaps had around 20 breaks. I don’t mean holidays (although considering how much we travel as a family…), I quite literally mean just being able to take time out from being mum. I am counting those times I have been able to have a lie in and my husband has done everything, or I have already done everything and I just go grab myself 5-10 minutes of freedom. I don’t mean breaks like “woo, night out” although there have been a few of those included in that total, not many though. Which even if I totaled up as entire days would still barely scrape 1.8 percent of my life in the last 3 years.

I mean, even when the children were at school I was rushing to and from meetings about their education, health and welfare. Often not even having enough time to shower, or even eat. I was denied basic self care through the needs my children had, and the time I was required to commit to them and the lack of support that was available (I quite genuinely mean required here… I was asking for, and fighting for help, but if I refused a meeting I was being difficult and therefore clearly didn’t need the help).

But I just keep getting told over and over, “being a mum IS hard, we all feel tired”, or “Yeah, I barely get 5 minutes to myself!”, “oh you should just do some exercise, it’ll help you feel more positive”. I don’t feel tired, my body is failing me because of how neglected it has been, and how exhausted I am. I don’t barely get 5 minutes to myself, I quite literally don’t have 5 minutes to myself most days. Exercise is unlikely to help considering that extra trip up the stairs that I didn’t need to do can sometimes wipe me out entirely; or that I am either pushing a wheelchair or carrying a 6 year old with a toddler carrier when I am out shopping or walking anywhere, not just plodding along leisurely.

It’s not that simple. I am not just a mum, doing just the mum thing and then moaning about it. I am a mum, a carer, a therapist, a teacher, a life coach, a student of experience-psychology (by that I mean, being taught by what I experience about the psychology of children who are traumatised). I provide 24 hour care, I barely get any sleep, even if I get a child free bed because I am listening out – the children CAN NOT ask for help at night time. Night time is dangerous. They must take cover and hide and await the safety of morning. If they get too scared, we could have a wet or soiled bed, or worse, we could be dealing with trying to reverse the damage of self harm. I am on high alert 24 hours a day, trying not to transfer that to the children, but also trying to be prepared for everything that’s going to happen, could happen, has happened and is causing consequences.

It’s more exhausting than just parenting. It’s like working 5 different jobs that cover the entirity of your week where you don’t get pay, personal space (not even for toileting mostly, because one child finds it that hard to separate and the other child will cause harm to self or others if out of eyeshot for literally the length of time it takes to race unrination, pull up pants as you flush and wash hands).

But also, it’s lonely. Because everyone just gets fed up of you trying to vent out your frustrations, or because you talk about the kids (when actually that’s the only goddam thing you have done and known for months). Because of isolating yourself from the people who talk you down and make you feel like crap. Of just deciding that, no matter how tired you are, you are just going to do everything you need doing yourself (on the most part) and avoid help from certain people if you can help it because help often comes at the cost of degradation. Being told you most certainly are not ill, that the person helping you is so much worse (because you are on your feet and trying). Being told you are lazy (when your husband has said “no, you have the kids to look after, take care of them, they are anxious, keep them away and let us do the physical tasks here”) so you aren’t helping people move things, dig things, build things.

My job as a mum to these two children is mentally draining, physcially overwhelming and very strenuous. I wouldn’t change it for the world. But I would happily change the people who are supposed to be there for us in a heartbeat. And that thought plays over and makes me feel physically sick, and fills me with guilt for having thought it. But it’s true. People just aren’t there for us, like we have been there for people. Because they don’t understand. They would if they just listened, but they don’t. They talk over me/the children, lessen our problems, minimise our stresses and strains and say it’s normal. I lose faith in humankind almost daily.

And before anyone says I am depressed. No, I don’t really think I am. I may be suffering with compassion fatigue somewhat. I may be overwhelmed with how much is expected of me at times. But I am not depressed. I am reacting to the experiences I am having. If you are treated like rubbish daily, you either fight back, avoid the situations in question or accept feeling like rubbish (I don’t have the energy for the first all of the time, and the latter has never been an option for someone quite as justice fighting as I). So I avoid, not in a depressed manner, but in a self preservation manner; I save my energy for what matters: me, my children, my husband, my household.

Some hope is redeemed though when I see articles, blogs, posts pop up on my news feed of people helping other’s out and changing lives. Not those “oooooo look I tricked a homeless person into giving me their money just to prove they have better morals than the rest of society, I just so happened to record it too look…” If you can’t read it in my tone, I hate those “social experiments”. No I mean, in cases where people have gone out of their way to help someone, but not posted anything for credit – instead the person who has been helped shares their side of the story. One of those I read this morning gave me hope (Scary Mommy’s post about Sheila O’Mally).

That’s what goes on in my head. That’s how I feel.