autism

All posts tagged autism

Tired and Grumpy!

Published September 17, 2019 by thefamilyof5

Big girl had a very poor nights sleep last night, she tossed and turned for many hours, unable to switch off her brain, desperate for sleep, but unable to reach it.

Today she is tired and grumpy, unable to engage in anything, unable to regulate herself.

Can you guess why?

The safe guarding social worker came on a Tuesday, big girl, too scared yesterday to ask the question for fear of what the answer might be, went to bed worrying a social worker might be visiting today.

Again I ask, how is this sort of ‘help’ helpful!?

It isn’t, that’s quite simply the answer. It isn’t helpful at all.

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The trauma response.

Published September 11, 2019 by thefamilyof5

As expected, the girls all struggled to sleep last night. In particular, Big Girl, she had a very poor nights sleep.

I was greeted this morning with anger and irritation. She was tired and anxious. The visit yesterday had triggered a trauma response. She hadn’t been able to regulate herself and had felt increasing levels of anxiety through the night. She was already overwhelmed.

Me: help, she’s gonna blow again!

Post Adoption social worker: oh dear, not much you can do about the assessment though is there, just let the Safeguarding Social worker know.

CAMHS: increase her medication.

So much for help!

I asked for help last time because Big Girl becomes violent and aggressive when she is anxious. They made a safe guarding referral. I thought that would bring help, you know, like a crisis plan, an emergency call button, someone to bring me hot meals in the days after a ‘crisis’!? Ok that was wishful thinking.

But I asked them both for help! What they sent was an almighty shit storm disguised as a ‘Safeguarding Assessment’. The assessment that has triggering yet more anxiety in Big Girl. All the girls are now crippled with worries and anxieties, its left them anxious and insecure and wondering what the hell is happening in their lives.

There are many more appointments to come yet.

Last time, the trigger was the uncertainty around her education provision (we still don’t have answers from the LEA).

This time, the trigger is the ‘help’ they’re forcing upon her. She doesn’t want to talk to strangers and she doesn’t want strangers in her home. She doesn’t want an assessment or for people to ‘know her business’ (her words). She is scared. She doesn’t understand what is happening. She’s frightened. There is the shame, she feels ashamed when she see’s her sisters are also finding the assessment hard, when she see’s them crying and asking me ‘why?’ She feels bad.

How is this helpful exactly.

We’re heading for Rocky waters again I fear.

The first visit….

Published September 10, 2019 by thefamilyof5

So today was the first visit from the safe guarding social worker. I told the girls a short time before she was due to arrive to minimise their anxiety building up.

Big Girl and Middle Girl remained close to me, clearly watching the window anxiously awaiting the arrival. Baby Girl went to a different room, but sat in a position whereby she could also see the window/door, and read (pretended to) a book.

The social worker was pleasant, introduced herself and explained she was there to see how everyone was doing. The girls giggled quite a bit, hid behind their hair, and briefly engaged in conversations about hobbies and books and things like that. The social worker attempted to subtly find out what access to technology they have, how often they see friends and if they get pocket money.

I’m assuming the social worker could sense their anxiety, despite their outward smiles, because she only stayed for 30minutes (she’d told me she’d stay an hour or so when she called). She asked them if they’d be happy for her to come back next week and they all excitedly chirped ‘yes!!’.

I could see the anxiety, I knew that ‘yes’ wasn’t genuine. I reminded them that she was a nice lady here to help and they could say anything they wanted and she wouldn’t mind. Baby Girl piped up defensively that she was saying exactly what she wanted to say! Big Girl looked at me with a desperate look in her eyes and Middle Girls bottom lip was quivering whilst she smiled and nodded.

The social worker left. I asked them how they really felt. 1hr 45minutes later Big Girl and Middle Girl finally stopped crying and Baby Girl assured me she was feeling better also.

When the social worker left Big Girl had become angry, very rude and obnoxious. I can’t deny fearing she was going to blow again. I commented that maybe she wasn’t angry with me, like her behaviour suggested, but perhaps she was sad or anxious. She burst in to tears. She couldn’t tell me how she was feeling so eventually I asked her to try writing it down.

Middle Girl tried to tell me how she felt about the visit but the lump in her throat and the tears streaming down her face left her unable to speak. I also asked her to try and write how she was feeling.

Baby Girl lay on the sofa, peeled a sticker from a parcel besides her and put it across her mouth. I think she said everything she needed to in that moment.

Baby Girl ‘I don’t want to talk to a social worker’

Middle girl wrote that we was worried she would have to talk about what’s been happening with big girl, and she didn’t want to, she wrote it would make her cry.

Middle Girls feelings

Big girl wrote that she was scared she would say the wrong things to the social worker and she would write them in her report still and that scared her. She told me later that taking to the social worker again felt pointless because she wouldn’t tell her the truth. She wasn’t able to tell me why she wouldn’t be able to be truthful, but she did say ‘I never am with people I don’t trust’.

Big Girls feelings

Baby Girl told me later than she is worried the stress of the social worker visits is going to make big girl ‘kick off’ again.

I didn’t tell her of course, but so am I.

Note: Thank you to everyone that’s messaged me, commented, tweeted etc recently, I can’t tell you how much I appreciate your support. ♥️

Asking for help.

Published September 9, 2019 by thefamilyof5

I asked for help, I begged for it actually. I cried real and genuine tears down the phone to people and asked them to help me keep everyone safe.

No help came. No one came to keep us safe or check we were ok. Ring the police was all they could say.

They did however arrange an appointment some 21 days after big girls episode first started, more than a week after her final violent police incident and only a day after we finally felt we’d come out the other side. Big girls ‘episode’ lasted 21 days in all. That’s 21 days of everyone in our home feeling scared, anxious, stressed to the max and on lock down.

Today is day 26. Day 5 of feeling it’s safe to leave the house. Day 5 of the aftermath. Day 5 of the healing process.

The appointment consisted of 2 safe guarding social workers, 2 post adoption social workers, 2 ‘crisis prevention’ workers and our contact from CAMHS. Oh, and me and MFo5 of course. It was very clear from the outset that every single professional person, around that table, felt that MrFo5 and myself needed ‘parenting classes’. Regardless of the extensive list of training we told them we’d had, that was their only solution. Parental blame. Child to Parent violence is clearly the fault of the parents in their eyes.

No consideration or understanding of early trauma.

No real concept of attachment.

No real appropriate training.

MrFo5 and I were probably the most trained, well researched and experienced in the effects of neglect, abuse and early trauma. Yet we were being told WE needed parenting classes! ‘Introduction to the teen years’ or something like that, and even then, that was only because we’d already completed the NVR they initially suggested. The NVR they explained was ‘new to them’ and they were ‘still learning themselves’.

So tomorrow begins the first visit from a newly appointed safe guarding social worker who will be completing a 40 day child social work assessment. I didn’t have a choice I was told. She’ll be visiting to ensure my children are safe and happy and their needs being met apparently.

Not only does it leave me feeling extremely anxious about what they’ll decide and what experience and knowledge they’ll be basing their assessment from, but when the girls find out tomorrow, there’s the huge potential of their early trauma being triggered by such visits. They were removed from the scary violent birth family home by safe guarding social workers. I’ve spent 9 years working hard to ensure they all know home is a place they can feel safe. A social worker will visit tomorrow (and various other days) and potentially undermine all of that. In the very least it will add to everyones anxiety levels, more worryingly, big girls. Anxiety being the trigger for every single ‘episode’.

I’m unsure how my child attacking me because she is unable to manage the pre-adoption trauma she hides inside, warrants an ‘investigation’ of this nature. It feels like an investigation. Helping me keep her and us safe during her violent episodes, was all I needed help with. That’s why I asked for help. It certainly wasn’t so I could feel vilified and bullied by people who have never met my children and don’t know the first thing about their ‘needs’.

It’s unlikely I’ll ever ask for help again.

This isn’t help.

This is intrusive and blaming.

Masking

Published August 30, 2019 by thefamilyof5

Big girl masks everything, she very rarely expresses a need or hurt. She keeps everything tightly locked inside.

It’s an absolute tragedy that masking isn’t more understood. If it was, then when the professionals saw her outward behaviours this last 3 weeks, especially at the start when she only allowed a small piece of her inner self to be seen, they’d have realised that what she was feeling was 100x’s more than what they were seeing. She needed their help.

Today Big girl seems to have turned a corner. Yesterday there was a promise of a new prescription in the post today with new medication. When I told her there was an instant wave of relief wash over her. She stopped screaming at me and telling me she would fight me for the door keys. She stopped glaring directly in to my eyes and making threats. She stopped trying to intimidate her sisters. There was a slight smile and a few questions. It seems that was enough for her to be able to see an end to her pain and relax enough for her adrenalin and cortisol levels to subside. She knew help was coming. An end was in sight.

She woke today like a completely different child. Like nothing had happened. Her new medication starts Monday.

Today MrFO5, Middle girl, Baby girl and myself can all start to process our trauma and begin to heal our broken hearts.

Crisis

Published August 29, 2019 by thefamilyof5

We’ve been in a crisis situation here since Thursday 15th August. We didn’t know it was a crisis situation until a few days later though.

Something happened that day, I don’t know what and I’ve wracked my brains to try and figure out what. But something happened and the downward spiral for big girl began.

We increased her medication on the Saturday as we could see whatever was worrying her was getting too big for her to handle, but it was too late, by the Sunday she was trying to escape and climbed on to our conservatory (flat) roof and stayed up there, in all weather’s, for 3.5hrs. She was volatile and aggressive. This behaviour continued to escalate.

Her personality completely changes, she goes from being the calm, gentle person she usually is to someone violent, hateful, angry. Everything changes, her mannerisms, her voice tone, she makes eye contact (intimidating), becomes threatening, volatile etc you get the picture. My big girl is completely taken over by rage.

Tuesday 2 post adoption social workers arrived whilst she was trying to fight me for keys. I’d forgotten about the appointment in the midst of the chaos, they were due to complete the assessment of needs I’d requested back in June. They witnessed her behaviour, stayed a short while and then left. MrFO5 had to come home from work.

Then, by Wednesday (so almost a week since the initial trigger) she was wild, desperately trying to get out of the house and using violence to try and obtain the keys. She assulted me, her Nan and her dad (who had to come home again). The police were called at 11am. I asked my mom to take baby girl and middle girl to her house as they were utterly traumatised by the whole ordeal.

The police decided to call the paramedics for assistance after a while, and then both teams worked hard to try and find a resolution. CAMHS had been informed and were trying to also figure out how to keep everyone safe. Big girl masked her emotions for the entire 7.5hrs they were here, controlling the attention around her by showing them her colouring skills, shells and special stone, she even performed a makaton song for them. By 5.30pm the police and paramedics were forced to leave. Big girl instantly escalated her behaviour, the ambulance was still in sight that’s how quick she escalated.

At 7.30pm an AMP (I think that’s what it’s called) team arrived with paperwork to section big girl. Once again she masked her behaviour, told them all the things they needed to hear so they decided not to section her but would instead prescribe medication to calm her the following day at an appointment.

I asked my mom to take the younger 2 again for the day, the appointment Thursday went as expected, big girl masked, presented as calm and no medication was provided. I cried a lot.

Big girl continued to escalate. We worked hard over the bank holiday weekend to not make any demands of her.

Tuesday of this week she escalated to dangerous levels again, at the first opportunity she got, she ran out of the front door at 1.15pm. She was found almost 4hrs later, running in and out of traffic at a busy motorway junction 7.5miles away from home. It took 2 police officers to stop the traffic and then catch her and detain her kicking and screaming in to their vehicle. This is a girl that won’t walk to the shop alone, insists dad stays in the building when she attends her dance class, openly says she doesn’t feel safe outside of the house.

I requested that she be taken to a place of safety because I felt I couldn’t keep everyone safe whilst she was so angry. She was returned to home and the police stayed for a while. Id spent the day being passed from pillar to post on the phone from one crisis service to another, as well as completing missing persons reports and telling officers that my 15yr old daughter didn’t have dentures or any tattoos! It doesn’t bare to think about why they needed that information. The absolute highlight of my day was when the local crisis service told me ‘we’re not a blue light service ring 111’. No one would help us. The police left at 7pm. Big girl was still very unregulated and in desperate need of help. The 111 GP called at 11pm and told us they couldn’t do anything other than ring an ambulance or calls CAMHS.

Yesterday CAMHS visited first thing. Big girl was still angry and tried to escape while they were here, despite the huge blisters on her feet and swollen ankles from running 7.5miles in flip flops. I had to removed baby girl and middle girl from the house and my mum collected them again. A safeguarding referral was made. Big girl ranted she was being starved, despite her continued refusal of breakfast, she told CAMHS she’d already planned her next route. I questioned why big girl hadn’t been given the calming medication as planned last week, it could have prevented her running away. I was told the consultant who was part of the AMP team denied saying he would prescribe anything. I will be making a formal complaint about this. His words were witnessed by the rest of the AMP team. CAMHS managed to calm her, told her they’ll be doing some work with her around emotions and feelings and asked her to remain in her room until the safeguarding team arrived, they then left with a promise to follow up regarding the calming medication and instructions to call 999 if things escalated.

At 3.30pm 2 ladies from safe guarding arrived. One of the first things they said was ‘we’ve been told you don’t want big girl to live here any more’ (in ear shot of big girl) I corrected them. The rest of the appointment went the same, they saw big girl, saw she was unregulated. She was angry and making demands about her mobile phone which had been removed, she ranted that she liked the freedom on her 7.5mile adventure and wanted more of it, she ranted her sisters never want to play with her (that in itself is a sign of her mental age, she wants to play with ponies and dolls and ‘vets’ and ‘hotels’ and dressing up) they told her they wanted to give her all the things she wanted ie tech, and to prepare her for adulthood.

They asked MrFo5 and I if we’d had any training (this was when it started to feel really annoying) I reeled off the extensive list which included NVR and I was told they wanted us to work with them, in the home, on ‘better’ NVR training!? I asked them if they’d received any training in attachment or the long term effects of trauma and neglect. They hadn’t. I wasn’t surprised given their actions and advice so far.

Big girl was still unregulated, making demands and manipulating them. They suggested I run her a bubble bath and watch a movie with her. They had no understanding of how trauma was driving her manipulative ways or how traumatised and emotionally empty I was feeling. They suggested we took her for a walk as she’d expressed wanting to escape. I reminded them of the risk and they said ‘well if she runs we’ll deal with it’. Big girl, who could hear this conversation walked past us to the back of the house, threw herself to the floor and began crying. She said her feet hurt so much that she was unable to stand, walk, crawl. Eventually MrFO5 had to carry her upstairs. The safeguarding team left. Big girl began stomping about in her bedroom instantly. The reality is, she’d heard them suggest the walk and didn’t want to leave the house, I guess because she knows she’d feel compelled to try and run off. What the safeguarding ladies failed to understand was that, she’s trying to run from something that’s inside her head, she just doesn’t know how to manage whatever it is that’s upset her, she just wants to escape from it.

Today she is continuing to rant about wanting to leave and threats to fight me for the keys whilst hobbling about on her clearly very sore feet. She’s asked to speak to CAMHS, apparently she wants to tell them she doesn’t want to live here any more, she’d rather live on the streets apparently.

We’re all on our knees right now.

Oh, and we still have NO idea what caused this or how it will end or when I’ll see my gentle kind big girl again.

Loss

Published July 2, 2019 by thefamilyof5

At big girls special school the year 11’s left last Friday. Big girl told me Thursday night. (Last year the first I knew of it was an email from school telling me she’s cried the entire day, and then she came home and raged).

A quick e-mail to school and I was assured by the head that big girl would not be involved in the leavers assembly and she could be taken somewhere quiet instead. I explained how the themes of loss would be too much and likely to trigger her own feelings of loss. I also explained that as the day was likely to be tainted by themes of loss they’d need to keep a close eye on her. I asked them to move her to somewhere quiet if she showed any signs of upset during the day. I explained that it was unlikely she would be able to explain how she was feeling and would likely misplace any feelings of sadness to the ‘leavers’. I was assured this would be fine and staff would be made aware to keep a close eye on her.

I got an email late Friday to let me know big girl had been upset most of the day and was still upset when she’d left school. I replied instantly to check they’d moved her to somewhere quiet as agreed, but no reply came.

Shortly after I received the email, big girl burst though the door. Dysregulated and clearly overwhelmed. It wasn’t safe for me to ask her about her day. It wasn’t really safe for me to engage in any communication at all.

Until Sunday.

Big girl told me that on Friday she’d expressed feeling sad to her teacher. So it was then decided that because she was ‘missing out’ on the leavers assembly, they’d make special arrangements for her to attend the leavers party instead!!

So Friday, in an already unregulated state, she was taken the leavers party, for almost 2hours, with music, sugary foods (we have explained to school the issues big girl has with food and why it’s important she isnt given food treats/rewards in school) and dancing, in fact, all of the things that she hates and finds utterly overwhelming, with an extra huge helping of ‘loss’ to go with it.

Explains our difficult weekend!

Mr FO5 and I explained to big girl that we were concerned by the actions of school and as such she wouldn’t able to return. She was instantly a much happier child. Like a huge weight had been lifted. I asked her to grab a pen and paper and write down exactly how she was feeling at that very moment.

So now I await an explanation from school about what happened Friday and why.

I also received a phonecall Friday from our local authority who advised me that they’d reassessed big girls EHCP and decided that the current provision could meet her needs. I can’t repeat my response but I can tell you it’s unlikely they’ll ever telephone me again! In fact, I followed up the conversation with an email and requested they keep all communications in e-mail from now on.

Given the on-going issues over the last 18 months, we’ve requested tuition that takes place outside of the home i.e. local library or some type place. This will mean she isn’t home full time, which we’ve already discovered doesn’t work for her, and it will give her an opportunity to eventually, independently, travel to her place of study which would be a huge step in boosting her self confidence and independence skills, of which at almost 15, she has none. She will be able to attend social activities with us meaning she isn’t constantly overwhelmed by peers. Big girl isn’t really very sociable when it comes to peers. She much prefers adult company or to be with very young children/toddlers.

I received a draft copy of the EHCP yesterday, it makes for difficult reading, it’s very clear that big girl struggles with all aspects of a school environment. I’m not sure what the panel within the LEA read but it can’t have been the same as what I read.

So I now have big girl at home which means she’s super happy but it’s super hard for everyone else, I have to appeal the draft of big girls EHCP and get the LEA to agree a school setting just isn’t right for her, oh and I still haven’t heard a single word about the safeguarding referral that was made 4 weeks ago!

I’m tired of everything being such a huge battle, I’d really like to be able to get on with being a mom to ALL of my children. I just need professionals to take the time to understand my children and their needs.

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