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: Birmingham Museum and Art Gallery (and Dippy the Dinosaur)

Knowing that Dippy the Dinosaur (the diplodocus skeleton normally resident in London’s Natural History Museum) is on tour around the UK (currently at Birmingham), how much my children love dinosaurs and how easy Birmingham is by train I decided that this was a must this summer… so a day trip was planned with my little brother (Max, only 10 months older than Logan).

We were surprised to find out it’s all free. Not just the exhibition to see Dippy, but also the entry to Birmingham Museum and Art Gallery. So that was a bonus. But I must say, having never been there before, and knowing it’s a free museum, we were pleasantly surprised not only of the quality of the exhibitions on offer, but also the interactivity layout and presentation of the place. It was fantastic. The regret we have is not having planned more time there. But knowing it’s free and easy to get to, I expect there shall be a return visit at some point.

There were various different permanent exhibitions, from Ancient History through to the history of Birmingham There were many artifacts on display, quizzes, electronic interactivity, models, example clothing and fashion as well as sections for the children to play on something related, for example the 1930’s kitchen in the above picture gallery.

Then it was time for Dippy, although it is free entry, you have to book in for your time slot to enter online here. It was a big hall with Dippy being the central focus. Some dinosaur related information and displays around the outer sections of the hall. And then towards the back the children were given the opportunity to write on a brown label, with a message for Dippy to take on tour with him.

The museum itself was about a 5 minute walk from the Snow Hill rail station, but surrounded by a lot of building works. It wasn’t that hard to find as it’s quite centrally located. However, using google maps on my phone for directions we ended up facing the task of getting a wheelchair up a enormous amount of steps. Luckily, Caitlin can walk, so she could get out and be supported up the steps whilst her wheelchair was carried. However, on exit we found that if you enter the museum from Edmund Street this is much more accessible. The Museum itself does have lifts, though the one at the beginning of the museum was the only one in use whilst we were there, so you had to walk back through the exhibition to get back to the lift to go down… or find a way down the stairs. Toilet facilities were good and clean, though had run out of toilet paper by the time we used.

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.

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 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.

Please stop using your children as weapons.

I have been biting my tongue on this subject for freaking ages. But you know what, in the last month alone 4 people close to me have been in the middle of these type of scenarios and frankly it’s frustrating the absolute hell out of me.

Whether you decide to have a child with someone, or things happen and you are unexpectedly welcomed into the parenting world, you have a child and a responsibility to ensure that child has the best opportunities in life.

Now, you can consume yourself in the breast vs bottle debate, or argue parenting styles ’til the cows come home. But what isn’t up for debate is that the child had NO choice in being welcomed into the world, and the child deserves to be no part in the disputes you have with the other half of their DNA.

Yet, repeatedly I am seeing parents chanting their parenting mantras as gospel and declaring they are the best and everyone should follow suit, yet on the flipside denying the other biological entity any involvement, or fluctuating involvement based on how they are getting along as adults. Or even just denying any responsibility for the child.

THE CHILD IS THE ONLY ONE THAT MATTERS.

What part of that is unclear? If the child is safe with both parenting parties, why is it wrong to give them contact? And even if there are concerns we have contact centres… there are solutions.

Is it not our responsibility as parents to go out of our way to ensure they have everything they are entitled to? And speaking from an adoption background where little is known, knowing who your birth family is and having regular contact is key to being able to accept your identity, the very integral parts of who you are.

Hell, I know that none of these people who are having issues has done anything half as bad as what my children have been through, and yet I still prioritise making sure our letters are sent to birth family (not just the birth parents I may add, extended family too), not just once but a few times a year, and not just letters, but personalised art work for each recipient too. And that is prioritised above anything else in life besides the children’s immediate needs. If I can do that, and have to fight for everything else I can, knowing what I know about life events, and put my thoughts to one side for the sake of the children being able to have their identity accepted, I am positive that not a single one of you holding your child to ransom has a leg to stand on.

It genuinely makes me feel physcially sick.

I don’t care who is offended by this. I have, in all honesty, fallen out with friends who use their child against their ex. I won’t stand around and watch it happening. It is disgusting.

Stop it.

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.