Boo's Closet Life

It’s been a stressful year, and it hasn’t gotten any easier. I hadn’t wanted to write about it, as everything had been so depressing, and we just didn’t have the emotional energy after all the constant bad news.
We were told that once Boo aged out of school in July, that there were no adult services in place to support him, that he would be left to his own devices.
Reasons being, he didn’t fit any of the specialty teams, too bright for one, not enough mental health needs for another etc.
And that officially, mum and dad do everything that’s required, so there was no further support needed within the family!
His school have been fighting too, and they finally got feedback last month, that the council had also shut them down, and that there was nothing in Boo’s future.
But then at a parent session we attended, we met his former career’s adviser. She was able to recommend a local college, and we visited today.
Just WOW!
It will be a class of five, with support staff. He will learn basic life skills, social skills and help to prepare him for future independent living away from us. All the students are autistic, with other challenges, so he will be with other people who get it.
I’m not saying he’s going there, yet. I now have to begin the fight for a place, and funding for a year. We will have to prove again his dependency and care needs, but we have a great bunch of people behind us, who love and support Boo. And who all want him to have the best chances in life possible.
Wish us luck, we always need it here

Wow!
I hadn't realise just how long it has been since I last did a post about Boo's closet life and chaos.
I'll have to sit and write a proper update this week, but I thought I'd let everyone know we are still around.
Boo is still being crazy, and making us laugh and stress all at the same time.
Me and his dad have been a bit overwhelmed for the past few months, things aren't any better on the official Boo front, and I'll update on what is happening, and why in the next post.
But we are happily plodding along as a family, Boo hasn't destroyed the home yet, the cats are still demanding biscuits and I have to work on losing all those covid lockdown pounds.
I will say, the change from child services (the dreaded CAMHS) to adult services has been a nightmare and a waste of time. We are now in the no-man's land of being extreme special needs, without a single shred of support available via the community.
Our one spark of shining light has been his school. I cannot say enough how much Ysgol Y Deri has a life saver for us. He is about to start his last year of sixth form, and I dread the end of it. Because at present, there is nothing for him in a year. And I am already battling to get something sorted.
We are a hidden family, one of many screaming into the void. Parents to a child who is officially an adult, but due to his needs, still needing as much support from us as he did when he was little. The system says that because we are doing such a great job as parents, there is nothing they can offer us.
But as parents, we are hurting, burning ourselves out to care for our adult children. what will the system do when the parents finally break?
His care needs didn't change from age 17 to 18, and won't for a very long time. But there is no system in place for parents like us, and it is heartbreaking to think of the future. In twenty years, I could be gone, and what will be his life then?
I'll not stop fighting, but damn, I wish the Ginga would win the lottery, it would make it a bit easier to fight and get what's needed lol

This is the real life of a parent carer.
And it was brought home by Boo's latest assessment from adult services as they plan his transition from CAMHS.
The report basically summarised his care needs with the phrase, that while he has major support needs and requirements, and will for the rest of his life; mum and dad have it covered and there is little additional support they can offer him or us!
Too often, parents become trapped in a horrible catch 22. To be a good parent means we are seen as not needing any help and we have it all sorted.
But if we visibly struggle and it's clear we need help, or even dare to ask for support, then we are judged as failing, bad parents or sometimes worse!
To my fellow parent carers out there, I hope you have a peaceful week, and that you know you aren't alone.
Our family life has been extremely challenging lately, but my personal Facebook looks happy and bouncing. I am really just plodding along every day, trying to keep afloat, and I know I'm not the only one feeling that way.
I have no shame in it, and the more we shout out loud, the less stigma is attached. You are not an invincible superhero, you are an amazing human being, but you only have so much energy.
Be kind to yourself, and may we all fight the good fight and survive.

We've been heads down, surviving life for the past few months.
But things have still been happening behind the scenes for the Boo.
Boo is about to age into adult mental health services. So we've been attending sessions with a social worker (adult team), so she could assess Boo, and work out his needs.
It should only have been for a couple of weeks, three months later and we've finally finished stage one!
He's been unable to talk through most of it, could only tolerate half hour maximum on a good day, and quite a few times just walked out when he's had enough. That's my boy, working on his limits and going no further. I'm proud he's doing that now.
But we had a CAMHS phone appointment today. What a shock! They admitted they forgot about him, his care needs and proposed treatments, for the second time!
It's no wonder we have no faith in the system.
Our boy is classed as significant care needs, and complex diagnoses. That means he is entitled to the bare minimum at least, but the system hasn't even bothered with that.
He is 18 in just over four months, there is no point CAMHS attempting anything now, one, because they won't have the time to actually do anything, plus why force him to deal with yet another bunch of strangers who will do nothing, but confuse and upset him?
The doctor admitted they've set the bar so low on what we can expect from any mental health team, it's not surprising we have no trust in what he'll be offered by the adult team.
Thank god for his school, they have helped him so much.
But I was shocked when the CAMHS doctor said she could see how much he's regressed again, from even last year. And it's true. Hearing it from an outsider has highlighted how far Boo had come in his healing after the big break, and how much has been lost this past year.
And she agreed it's why his PTSD and anxiety is the priority. They are the powers controlling his life, and should have been supported by CAMHS. By being ignored and forgotten, the PTSD has increased his anxiety and he's shutting out the world more than ever.
We don't want or need any treatment for ADHD or autism. He is perfect how he is on a neurological level.
We just want our boy to be happy, living how he wants to be, and in a safe environment where he can thrive.
Is that too much to ask for?

Aargh!
the one day we are actually out of the house, and it all goes wrong.
Boo was a bit wobbly this morning, he's desperate to let his body clock flip, he's had a busy week as Mother's day meant spending time with family, then school Monday morning. So he's tired, and a bit fragile; but he wanted school.
We had to go half hour from home, to pick up our new car, and we thought Boo was safe in school while we quickly did the trip.
NOPE!
While out on a class walk, the poor kid was touched on his back, by a stranger, without warning. A totally innocent gesture, with no harmful intent.
Unfortunately it triggered a horrible PTSD flashback to the assault in Pencoedtre and he had a meltdown and froze. The team looked after him through it, but felt it best for us to collect.
It's Sod's Law, that the one time in a lockdown when we are actually away from home, and the poor kid needed us.
But hats off to Ysgol Y Deri, they looked after him perfectly. In the past, in old schools, he's been collected in a catatonic state, unable to move without guidance and totally shut down.
Today, he wasn't his best, but he enjoyed nosing about the new car, talked to his teachers at handover, cracked a joke on way home and chatted.
Anyone who tries to say that boy hasn't got PTSD, is talking rubbish. I'm just very grateful that he's with people trained to handle it, and understand how to support him.
Boo is now in bed, in the dark. He'll stay there for the rest of the day probably, and possibly tomorrow too. But we expect that, and let him decide when he's ready to emerge.

This isn't about being militant, nor extremist.
We don't support Autism Speaks as it encourages bad, abusive treatments, as they believe you can cure autism, and that autistics need to be changed and managed.
Nope, not in our house matie!
Autism is as much a person's identity as being left or right handed, being short or tall. It is your genetic make up, and shouldn't be messed with.
Yes you can force a change, but it is stressful, damages the psyche and causes additional harm to the person.
Boo is perfect as he is, he is who he is, and as a family we will never accept anything that tells us otherwise.

You’ll notice we use a lot of computing terms to describe how Boo is feeling. It makes sense to him, he can describe it better that way, and most people know what he means.
He crashes, he sometimes needs to be left to reboot. If overloaded he has a full shutdown etc. It doesn’t dismiss his feelings, nor does it mean he is a robotic person at heart. He feels, he loves, laughs, rages the same as anyone, but he lacks the ability to understand what each feeling actually is. So it’s great we actually have a communication language the he and others can understand and share.
There is a common belief that autistic folk are cold, emotionless, withdrawn or unable to love. That is rubbish. The truth is, as a spectrum, you may find some people who are, but you will also find some who care too much. Some are very empathic, others not.
I can’t read faces, or understand body language, so I can’t tell how another person is feeling without verbal clues. Boo struggles to understand what the emotions are inside his brain, but he feels them. The most basic feelings are the strongest, so extreme joy, sadness and rage are easier for him to identify.
But I love my family deeply, and I know it. I know boo loves us all too. We may show it differently, using a different love language, but don’t assume we don’t care.

It’s been a while since I updated, so a belated Happy New Year.
We’ve faced some difficult times over Xmas, as we lost his beloved Grandad, and Boo caught COVID, and while not majorly ill, he had a nasty cough that killed his sleeping pattern. He struggled for a couple of weeks, trying to understand what he should be feeling, worrying he wasn’t doing grieving right, and being ill too. But we explained that nobody grieves to a set pattern, and as long as he feels OK inside, it’s the right way for him.
He missed the first two weeks of online school due to family stuff, and he was happy at that. He dreaded going back online.
He loves school, and enjoys being in his sixth form class. But he just cannot cope with online learning. So we knew that when he started back, he would struggle. But he tried.
Unfortunately, he can’t learn online. So a standard lesson causes him to shut down, and if he tries to push too far, he ends up crashed in bed for a couple of days to recover. He isn’t able to cope with any form of online learning, and the modern method of Zoom, MS-teams etc. is very difficult for many to master, let alone a boy with special needs.
So I spoke to his teacher about the difficulties and she came up with a great solution. Rather than focus on trying to do the school work, let’s focus just on the social part. Boo has achieved the ability to actually be online, with a camera on him. He is able to play games with his class, talk, shout and enjoy being with his friends online, when the pressure is taken away.
He actually turned around and said he misses school so much, and can’t wait to go back. To hear him say that made my heart sing. It makes the world of a difference; to have such a supportive team look after him, and who take the time to communicate with us parents too.
Lately he’s face some personal challenges and beaten them. He was able to feed himself one night. He cut his own bread, and portioned out his meal parts. This has triggered meltdowns in the past, and he would normally rather go hungry than face that. The working out how big a slice to cut, is it too big or small? Does he need more than one slice? Should he have this meat topping or that? We take decisions like this for granted, but for some it’s impossible to work out. Then he panics what if he wastes food, or is still hungry etc. It becomes an overwhelming loop of panicked questions, which feed into the stress.
OCD and anxiety are difficult conditions to manage, as they feed into each other, and it can be so hard to break that thought cycle. Usually he has to be taken away from the situation, and allowed to calm down. But this time, he felt the stress build, but he could work out what he’d been allowed before, what felt right today, and know even if he wasted food, we would be proud he had tried.
We are grateful for every little challenge that he faces and beats. He has even moved from reading manga comics, to choosing proper novellas. He is healing, growing and becoming the young man he should have been, and will be again one day.

People have asked why do I fight so hard, it isn't that important. Oh yes it is, as it is the rest of Boo's life!

a lot of adhd and autistic folx don't like the Christmas and New Year stuff. too many changes, too bright, too much decoration, and definitely too many people.

Understanding that ADHD and autism affect males and females, and that women and girls are often overlooked as we have different symptoms and behaviours, is a challenge for some.
Things are slowly changing, but it can be hard getting support for women, as we are deemed less likely to need it

Throughout December I’ll be posting our very own Autism Advent Calendar, where each day I’ll be revealing a little something that the world needs to know about autism 🎄⁣
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Day 11: Girls are autistic too⁣
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Currently, more men and boys are diagnosed as autistic than women and girls. This is largely because many girls have gone undiagnosed over the years.⁣
Attitudes towards gender and autism are improving, but even now, many autistic women and girls struggle to get the support they need.⁣
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**A lack of diagnosis can be for many reasons. In the past many professionals believe autism was only present in boys, meaning many girls were misdiagnosed or ignored.⁣
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Diagnostic criteria has been changed over the years, and it was discovered that some autistic females have characteristics which don’t fit within the original profile.⁣
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Women and girls are also better at masking, where they are trying to fit in, and do so by imitating the behaviour of others. This could be hiding behaviour which might be seen as socially unacceptable, forcing facial expressions and eye contact, and mimicking behaviour. This can lead to their social challenges going unnoticed, and their diagnosis being missed ❤️⁣

Boo's happy clap is the most wonderful thing to see, his joy is visible to the world, yet it is rarely seen

Throughout December I’ll be posting our very own Autism Advent Calendar, where each day I’ll be revealing a little something that the world needs to know about autism 🎄⁣
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Day 9: Stimming⁣
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Stimming (self-stimulating behaviour) is a repetition of body movements, sounds, or the movement of objects. It’s really important to let an autistic person stim freely without judgment. Stimming is a coping mechanism, helping them to self-regulate, lower anxiety, and sometimes even a way to show joy ⁣
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We all indulge in self-stimulating behaviours , whether we’re autistic or not. Biting our nails, twirling our hair, rubbing our face, tapping our foot, are all examples of repetitive movements that we might do in times of stress. But these are seen as ‘socially acceptable.’⁣
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For an autistic person their stim might be seen as strange, for example, flapping their hands, rocking back and forth, spinning objects, or repeating sounds. But it has the same effect.⁣
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Unless it is dangerous (in which case finding a replacement stim might be effective) stimming is something that should be accepted and embraced ❤️

The cutest description yet

https://pipistrellus.tumblr.com/post/168037580799

These are just amazing.
Some are so Boo, a few are me!

This is what Boo does.
People think autistic and adhd meltdowns are like temperature tantrums or full of violence.
Nope, there are many versions, its why it's called a spectrum!

Here’s an update on Boo and his new life attending school.
He loves it, though it’s still unsettling at times. We struggle with his sleeping pattern as he wants to live on a 26 hour day, but it works overall.
Even though Wales had a two week shut down, Boo didn’t. He had Amelia Trust during half term, and it was brilliant! He was very nervous about going as it has been a very long time since he could last visit. But the staff looked after him, he had fun, and couldn’t stop talking about the different animals he had handled and seen, including a snake, geckos and others. He even tried to convince us that he deserved a pet gecko, but not just yet!
As his school is a special needs set up, he was still able to attend during lockdown. A big relief, as routine is so important. He did have school cancelled on the Monday as the deep clean staff had tested positive for COVID and needed to quarantine.
He even managed an eye test at Asda. I was petrified about this, as Boo can’t wear a face mask, but he looks so grown up. I was worried people wouldn’t understand or be tolerant as to why not. He was questioned by the security guard at Asda, politely, but his dad explained and there were no issues. But it was a struggle and Boo wouldn’t have coped with the question if his dad hadn’t been there.
Funny story of the week, Boo has had a few changes in his class, a new student, different staff and a new staff dealing with him today; all which he hates as he can’t handle any change or lack of routine nor strangers at short notice. We warned the school that he has a very dark and sarcastic nature when he’s comfortable, and that he will speak out honestly and brutally.
So today he was introduced to a new member of staff, a bubbly and cheerful lady. In front of two classmates he turned around and said “I don’t like you, I can’t handle bubbly personalities and to be honest I don’t think we are going to get along!”
Oh dear! Result was one very upset staff member, friends saying he’d been a bit too harsh and Boo struggling to understand why being honest isn’t always a good thing. You have to love autistic bluntness, there is no better truth.

Wow!
Some of these hit home for not just Boo, but myself too

Hello strangers.
It's been a few weeks since I last posted, and life is good.
Boo has decided to start all day Wednesday, and mornings Monday and Friday.
Unfortunately he can't cope with that so Mondays are falling by the way, as he totally flips and recovers from his week but he's doing his best.
Wednesdays are special, in the afternoon his class plays dungeon and Dragons, and he is loving it. He plans his whole week to make sure he is able to cope on Wednesday.
He is enjoying school, it's been the right choice and now he's settling into his new routine, I have to start the preparation for the next stage.
Thanks to COVID, his PTSD therapy and getting his white noise hearing aids has been postponed, as both need to happen in close proximity and it isn't the right time.
But I'm currently getting his sleeping pattern logged, as another query is about his sleep quality. He seems to function best on a 26 hour plus daily cycle. But as you can imagine, it doesn't work well with normal life, as he soon slips into a different sleeping pattern to the rest of the house.
So he is wearing a watch every bedtime to log his times, quality and quantity of actual sleep. He doesn't sleep the best (he's lucky to hit 70% on quality level), but I really hope we can get some support next year, when clinics resume.
But until then, we keep him safe, help him to do the stuff he loves, and nag him to eat and drink when he forgets. So normal times!

I created this page to log the fight for Boo's diagnosis, and his education.
And today is the final day of that battle.
He is off to his induction morning in a couple of hours, ahead of his first formal day of sixth form on Monday.
Almost seventeen years of age, and we are finally at the point of giving him the proper support and education plan that he needs and deserves.
One that will cater to his special needs, while allowing him to heal, and also gives him the chance to be taught the skills to become an independent adult.
I am hoping today will be the last time I have to post about his current journey, other than for happy updates, and I will probably start an honest exploration of our past journey (warts, depths and all).
So today we are celebrating, we are the proud parents of an amazing young man, who has suffered, but never given in, and his reward will be McDonald's breakfast followed by a giant cinnamon bun from Tesco, his favourite cake.

Happy Anniversary
a year ago today, the system began supporting us

I've been working on Boo's story of his special needs history, covering his school issues, diagnosis journey and mental health battles, and it's been tough to write. So I've been out of the loop a bit.
But this past week has blown every gloomy cobweb away and brought the sunshine out!
Last Wednesday, we had the call confirming Boo is receiving a statement, and it is proposed to send him to Ysgol Y Deri Sixth form. I was told to look for the email on Thursday with the details.
Thursday I had an email saying that his paperwork was too big a file to email, and that I would have to wait for it via snail mail. Doom and Gloom, as I am the most impatient person ever, and the thought of waiting was a killer.
Friday I had a fantastic gift from his youth support team, they had a voucher to pay for his school uniform needs, and he will be able to see physical proof of it all, when we buy it. Then I had a phone call from his new school, the deputy head rang us to confirm his place in September, and a parent welcome pack is in the post for us.
Saturday, his statement paperwork arrived, and I can see why it had to be posted, the entire pack is huge!
Me and his dad sat and read the lot, and it was emotional. It is comprehensive, and some of the quotes hit home. It is clear in pinpointing how special our Boo is, but also states what is needed to help him have the best future. From how the constant bullying he's faced has been recognised for the damage it's done, resulting in PTSD. How he thinks and behaves.
There is a set of reports I hadn't seen before, which are now added to his file.
Monday (today) he agreed to letting me book his uniform fitting appointment, so tomorrow we are off to buy his two hoodies, zipped, not pull over, and to view the polo shirt, though he doesn't like the photos.
Life can be harsh, but sometimes, after a major battle where you think you've been broken and exhausted, and have nothing left to spare, suddenly it is revealed that you've actually won the war, and can finally rest (for now lol).

Exciting times are here!
Boo has specific clothing needs, which thankfully are usually fluffy jogging bottoms, and long sleeve T-shirts, without collars. Thankfully his new school allows this, or we'd be in trouble!
Quick order done, and he loves them. Boo was actually excited about the idea of school, and questioned me on when we'd be getting him the official school hoodie. He's even willing to sort school trainers, which normally he hates doing.
**
Yesterday he came downstairs and said he's actually getting decent sleep. This is an immense result. Boo has terrible sleeping issues, he can be awake two days straight, then sleep 15 plus hours to recover. He can be exhausted, his body shaking from the strain, but his brain will not shut off to let him relax. It's an awful cycle to witness, and it is beyond our control.
We had a chat, and knowing that his wishes are being met, that things are happening to help him, which he can actually see, has helped his anxiety levels. He feels a bit of control over his life is returning, and he needed that. Knowing that he is going to a new school, with supportive staff, and that he will never have to go to mainstream again, has released a lot of fear, as he knew he would break again if forced back.
**
Support has been discussed, and people will be arranging trips around Barry, and dad is going to be taking Boo for little drives back and forth Ysgol y Deri, to get Boo used to the travel. We can't plan official transition events yet, but we can make sure he is able to cope with meeting people, and travelling first.
I loved that the support trips are being planned around the food available. Next week Boo is going to Barry Island, dad will drive him there, and his support team will chill with him (social distancing of course). But the highlight is doughnuts, ice-cream and a bag of chips.
Got to love my Boo!

I cannot stop crying today, I have just had the telephone call that will define the rest of Boo's life.
The decision has been made to issue a statement for Boo, and to offer him a place at the sixth form of Ysgol Y Deri, hopefully to start September. No timetable as yet, as COVID makes things complicated, but the principle is agreed!
This is going to put Boo on the path to having a life as an adult that he will enjoy. He is finally going to be back in education, in an environment that will support his needs, and let him heal and recover.
The funny thing is, he's been at his Grandma's for two nights, as we had major work done downstairs, new hall and dining room flooring. So he's back home this morning and is currently more focused on how weird the floors feel and that the house smells funny.
We still have things to sort, and some fine tuning of the paperwork, but he's going to sixth form!

Life has been on a back burner, as it is for many.
I had managed to meet all the deadlines, sorted the paperwork, chased reports and was told to wait until May for a decision.
But the goalposts were changed, what a surprise!
First I was told that there was a delay getting a report from adult speech and language therapy, which surprised me, as they aren't part of his diagnosis or treatment plan. His mutism is stress related and managed, and forms part of his autism.
Then when I chased up asking what was happening, I've been given a new decision date, 13th July!
This left me so frustrated, as council departments close over school holidays, and that would leave me with less than a week, to get a decision, and if necessary start the fight for an appeal. But hey, why does that matter since they delayed the process for a year already, grr!!
Then I found out that the actual delay was because the official paediatric report from CAMHS was sent to Cardiff Council, a body we have never had dealings with, have no reason to associate with us and god knows why they had it. That council then kept the report for an additional two weeks, before forwarding it to the Vale Council, where it has finally been logged onto Boo's records.
But they denied any delays and none of this was discussed openly to us, when questioned.
I hate the lies, tactics and stress, the constantly changing rules and deadlines, and the ever constant failure to tell us anything. After all, we are only his parents and the primary carers.
As ever, the bureaucracy and procedures are designed to wear parents down, to make it so difficult to access the most basic of education and support that a special needs child is entitled to. We are supposed to know what forms, which departments and what entitlements are needed, but nobody ever actually talks to the parents to help guide us through this, and every area has it's own procedures, with different methods across the country.
But they will learn, they are messing with the wrong family here, I am fed up, worn down, but I will never, EVER give up!

What an amazing week regarding Boo’s case and his medical needs.
After the statement call on Monday, we had a mega amazing Friday!
The telephone call with CAMHS was a revelation! It was one and a half hours long, just taking his history, and a summation of his special needs. During the discussion the doctor apologised for how he had been abandoned and that his case should not have been closed by CAMHS, and that he should have been supported over the past year. To finally have acknowledgement that he has been badly let down after his breakdown has helped me, as it confirmed that I was right to never back down, even though I have doubted myself many times, and worried that perhaps I am making things worse.
It has been agreed that PTSD is a definite possibility, due to the prolonged bullying incidents, cumulating in the final incident in December 2018. Plus that he has not healed from his breakdown as expected, and still remains in a fragile mental state. We were meant to touch base in two weeks, but the doctor called back later the same day to confirm his new treatment plan, as it is now a priority.
He has been referred for EMDR therapy (Eye Movement Desensitisation and Reprocessing), and his case is being rushed through as he’s been left untreated for so long. Our first session will be by telephone on Thursday 21st May. This will be primarily discussing in detail the major bullying incidents, which have formed the foundation for his PTSD, including the gun saga at Barry Comprehensive, and the teacher incident at Pencoedtre. How his further treatments will progress is unsure, due to COVID19, but they are working on procedures for clinics.
When discussing what Boo’s plans and future are, the preferred choice of three years at Ysgol Y Deri, followed by a year at a special unit at a mainstream college to integrate him into formal education was mentioned. As we felt it would be a very long term project to help him through therapies, support him and help him heal to the point of thinking about his future. The doctor agreed this sounds ideal and that it is clear that he will not be able to cope with mainstream education for a long time.
I received the paperwork this morning (Tuesday 5th May), acknowledging our discussion and a form on EMDR. We have been told to research it, and prepare ourselves, so we know what will be happening at his meetings.
So there we are, Boo’s case is as always complex and constantly evolving, and yet another avenue of treatment and support is now open. We are watching the calendar and counting down the days until the statement decision by the council is made, so we can work out the next step. If it is a no, an immediate appeal will be launched. A yes will mean a placement request to YYD submitted, and once lockdown is lifted, the school will discuss transition options to prepare him for September.