autism

All posts tagged autism

When your child is different at home and at school – Jekyl and Hyde

Published November 30, 2018 by thefamilyof5

via Three things that happen when your autistic child is different at home and at school

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It all just got too much.

Published November 12, 2018 by thefamilyof5

I’ve noticed all of my blog posts lately are about big girl, she’s really still finding life very tricky.

Since starting at the new special school January things have got progressively worse. Sadly because she masks all of her difficulties in school, the staff have found it very difficult to proactively support her. We have had a few meetings, but it’s hard for them to see the big girl I describe when she presents so differently. It’s been the same issue in every school she’s been too.

We’ve had numerous occasions whereby big girl has come home from school in what I can only describe as a manic state, it often quickly turns to anger, more often than not developing in to violent outbursts. Sometimes the police have to be called.

It’s got pretty bad. Not only is she prescribed anti anxiety medication by Camhs but they now prescribe anti psychotic medication for use when she is struggling, or we know there’s something coming up that she will struggle with. My heart aches 😦

This weekend was another of those manic episodes whereby she was talking gibberish and clearly in a state of complete overwhelm. It’s so sad to see her like that.

She is finding all aspects of her school day stressful, everything from traffic in the taxi, music in PE and loud dinner halls to boys behaving oddly (flirting is my guess) and girls putting all of their emotions and worries on her.

Big girl created a fake persona when she started at this school. She made herself out to be socially able, confident, fun, giggly and a capable. She’s none of those things, in fact I’d go as far as to say she is the opposite. She doesn’t even really like people all that much.

I know why she did it, she wanted to fit in, to be liked. And for a few weeks, maybe a month or so, it worked. She made friends, she felt liked and she enjoyed those positive feelings.

But over time, maintaining this fake personality has taken its toll. She’s become somewhat of an agony aunt to the younger girls it seems. This is a girl who doesn’t understand her own feelings, never mind know what to do about them. The girls in her own class are obviously looking up to her also because they’re getting her to help with their boyfriend issues, and asking her for advice on sex and boys and bullying. Big girl doesn’t even know what sex is, let alone have the slightest interest in boys. So many emotions are being offloaded on to her by peers and almost all of them make no sense to her.

She’d rather play Vets with her sisters.

The fake persona doesn’t end on the playground either. The staff have been seeing her as confident and capable, I imagine they’ve spent time wondering why she’s even in their school especially as she is academically pretty average. They’ve been choosing her to represent the school at events, be the nominated speaker when visitors are in school, be the lead role in a group, she even nominates herself sometimes! The list goes on. And of course she’s done all of the things they’ve asked/expected of her, with a fake smile on her face, she’s a people pleaser, it’s what she does to keep herself safe.

Big girl feels overwhelmed by everyone’s ‘feelings’, their ‘expectations’ of her and of course she also feels ashamed that she is unable to be herself in school. She tells me no one in school has ever seen the real her.

So MrFO5 and I made a difficult decision the weekend and decided to put big girl on a reduced timetable. We are awaiting a date for a meeting with various professionals and school. Big girls EHCP hasn’t been updated since she was home educated, despite a review taking place at my request in July, so at the moment, the plan doesn’t even detail the support she needs in a school environment never mind reflect her needs. We hope a meeting will be arranged before Christmas and we can get big girl the support, or alternative provision that she needs.

I’ve tirelessly tried to support school to see big girl for the emotionally and socially 6yr old that she is, but they just can’t see past the facade of the confident 14yr old she’s pretending to be. So for now, she will attend only 2.5 days a week with full support at lunch and break times. The new timetable we’ve devised gives big girl a break between each day, giving her time to calm down and hopefully to stop her anxiety building throughout the week. The support for break and lunch times will mean she isn’t on the playground and can’t get overwhelmed by the other children’s drama’s and expectations of her.

It’s not an ideal situation. Big girl is in school because her attachment difficulties made home education too intense for her to manage so this extra time at home is going to be difficult for all of us to manage.

Today though, my big girl has enjoyed her 1st half Monday and played with her babydoll. We will continue to plod along this path and support big girl as best as we’re able.

Big girls struggles

Published November 9, 2018 by thefamilyof5

Here’s big girl, in half term last week, playing with her baby doll, her favorite thing to do.

When she goes to school, even though it’s a special school, she feels a huge amount of pressure to ‘be’ her 14 chronological years.

Big girl is a 6-7yr old in a teenagers body, what you see is just a facade. People see a teenager and interact accordingly. The girls in her class assume she can handle their friendship woes and talks about their teenage worries, they even ask her for advice. The boys see a pretty girl and flirt, expect an appropriate reaction when they flirt with her despite her not really know what flirting is, or what it means. The teachers see an academically able, smiling teenager and wonder why she’s in their school so they load her up with expectation and responsibility.

She’s crumbling under the weight of other peoples expectations and pressure.

She so desperately wants to fit in, and her mimicking skills give her the drive to respond as expected. Thus creating the illusion, and with it comes increased expectation and pressure.

Life overwhelms big girl constantly. She is unable to manage her emotions. She doesn’t understand them. She can’t verbalise them. She can’t self regulate. She erupts. Violently.

In an ideal world she’d have stayed in primary school forever, I even remember expressing this view when the time came to move. Primary school age is where she has always been most comfortable and she has never progressed from this. Yet she is academically able.

She came home from school today a jibbering wreak of psychotic hyperness. Laughing manically, high pitched voice, strange gestures and mannerisms, not making any sense. It quickly moved to anger.

I don’t know how you help a child who can’t cope with the life society expects of her which then makes her expect it of herself?!

The numbers just don’t add up.

Chronologically 14

Academically 12

Emotionally 5

Socially 6

Where does someone with those numbers feel like they fit in?!

You and your walls!

Published November 1, 2018 by thefamilyof5

I have 3 children, not just 1.

I’m just reminding myself, but mostly others.  I’ve spent 8 years fighting for support for big girl, but there are 2 other equally special little girls that also need support, and a Mommy that isn’t preoccupied and exhausted with school appointments, support services, CAMHS, medication, trauma and violence.

Those people that make it so difficult for big girl to get the help she needs, also need to know that the walls they put in place effect all of my children, my entire family in fact.

Hope you guys sleep well at night.

Ground Hog Day

Published October 4, 2018 by thefamilyof5

Do you remember when you child was 5? Or 6? Or even 7?

Do you remember how hard parenting was (and how you thought that was the worst bit and then they became teens)?

Do you remember all the ‘why?’ questions? Supervising tooth brushing, making sure they’d washed their faces before bed and their hands after visiting the bathroom, picking up the dirty washing from their bedroom floors and tripping over the toys left strewn about. Opening the toy cupboard and everything falling out, the toys that got ‘accidently broken’ and the ones that mysteriously appeared after school, or a play date (or visit to the shop). The endless pile of mini figures and plastic animals.

The talks about how the story from that weeks children’s TV programme wasn’t real and pigs couldn’t really wear boots and jump in puddles. Or the times you listened to them telling you how their best friend was mean because they played with someone else that day. When their understanding of the world was so limited. When they didn’t have the ability to tell you how they felt so they just chucked some toys about instead. When you had to read between the lines to spot the bad behaviour was because they were feeling unwell. Reminding them not to talk with their mouths full and to blow their hot food. Using sports bottles because cups got knocked over so much. Reminding them to sit in car safely and watching as they wave to the police man as he passed on the other side of the road. Having to supervise them around the fire or the cooker so they didn’t get burnt, having to remind them to stop look and listen when crossing the road and to pause at commas and stop at full stops when they read their books.

And then they had a birthday and a new year of new challenges and milestones arrived, but you knew it was ok, because it wouldn’t be forever.

Well it seems these have been stuck for 8 years. I don’t have to tie piggy tales any more (they’re almost taller than me) but I still have to remind them to brush their hair, tie their shoe laces, wash their hands, not to touch the hot oven, look before crossing the road etc etc I still have very young children, but they’re now in teen size bodies with all the other complexities that come with hormones and adolescence. It’s been like ground hog day, every day, for years.

I’m really exhausted.

Big girls bag of worries.

Published April 11, 2018 by thefamilyof5

Big girls been struggling this half term, she’s very hyper, manic even, and not sleeping.

I managed to establish with her yesterday that she’s worrying about going back to school because she’s finding break times difficult. She often doesn’t have someone to talk to, or play with and finds being alone uncomfortable. She doesn’t want people to see her looking sad or alone so she finds herself running about, bouncing like a bunny (her words) and generally appearing busy. She tells me she doesn’t like acting like this (it is all very out of character behaviour for her, she’s not one for silliness really). She says it makes her even more anxious pretending to be enjoying herself and still worrying that people will be ‘looking at her’. We had a chat about it and I explained that I’ve been speaking to her teachers who will be trying to support her better at these times and also how she could go and stand by a teacher when she is feeling left out. We also talked about what she could do to feel less lonely and with nothing to do. She gathered a colouring book and some loom bands to put in her school bag and seemed happy with this idea. I thought, I hoped, that might be enough to reassure her.

After another sleepless night I suggested she spent some time really thinking about her worries. Breaking each part down and looking at what it really is about. I gave her some ideas on how to do this such a story, write a diary, design a poster etc. It really is something she needed to work through by herself. Big girl spends all day avoiding her thoughts by keeping busy and filling the quiet with noise. I suggested if she processed her thoughts and came up with some ideas and solutions that she felt might help, then she might do less ‘thinking’ when she’s in bed each night.

She disappeared, and reappeared about 20 minutes later looking pleased with herself.

Big girl: mom, I’ve just realised, if I can tell my teacher I have a pet hamster then I can tell her I have no one to talk too as well can’t I!

I really hope it’s as simple as that and she is able to remove her mask at school and let them see her struggles, or in the very least this simplified idea affords her some sleep tonight.

Brains, RAM and virus protection!

Published March 28, 2018 by thefamilyof5

I’m a pretty organised person, I’m one of ‘those people’ that starts Christmas shopping in January, has birthday gifts purchased weeks in advance and has a collection of varying sized and varying coloured envelopes for all eventualities. Yup, I’m one of those people.

Well, I used to be. Yesterday I suddenly realised it’s Easter Sunday THIS Sunday! I’ve no eggs for the Easter bunny to hide in the garden or gifts for the girls (because they’re lucky enough to get many many eggs from friends and family). I’m thankful for my Amazon Prime account right now.

So whats happening to me?! Have I broken?!

No, well, not yet. It’s a distinct possibility for the near future though if I don’t clear out my busy head. My head is so busy that when I try and think, some kind of whirling spinning motion begins in my head with thoughts flashing past so quickly that I can’t even see what they are.

I know I know, I’m a mom, I’m supposed to have a busy head, I’m supposed to be planning tea, mentally keeping an eye on the washing basket, remembering to load/unload the dishwasher, feed the cat (Oh and our newly arrived Hamster), water the plants, iron the shirts (that’s literally all I iron, life’s too short for ironing!!), do the shopping, pay the kids club fees, keep the kids (and husband) alive.

Simple eh!

No, not simple, my brain isn’t doing any of the above because it’s too busy doing all the other crazy shit that is my life.

Always having to stay one step ahead of three ‘not to small any more’ people, always having to pre-empt what their reactions to things will be, reminding them to wash their faces, ensuring they’re brushing their teeth, checking they are wearing appropriate clothing for the day, sniffing hair as they depart the shower to make sure it was actually washed, keeping an eye on footwear, does it still fit? They won’t tell me if it doesn’t, constantly having to keep plans in my head until the last minute so they don’t get anxious, listening to everything they say as well as everything they don’t say.

In my head right now I’m keeping a hair appointment for Friday a secret, a trip to Nanny and Grandads for Easter dinner Sunday a secret, an optician appointment for big girl next week a secret, a day trip with grandparents in the holidays, a visit to see cousins next week a secret, even plans to visit the farm for Easter dinner supplies and possibly lunch in the cafe tomorrow has to remain in my head until tomorrow. I can’t even reveal that we may go out for dinner bank holiday Monday whilst Daddy is off work, as much as they’ll enjoy it, they won’t manage knowing this stuff before it happens.

Then there’s the longer term stuff, holidays, meetings, birthday parties, weddings, which incidentally are a nightmare, imagine trying to keep an upcoming event a secret whilst simultaneously ensuring everyone has an outfit to wear, nightmare! Preparing for a meeting with all this stuff in my head is also a nightmare, I’ve been trying to refresh my brain on everything attachment lately for the meeting with big girls school (which was rearranged for the end of April) but as soon as I pick up one of the new shiny lovely smelling books that I bought, my brain starts thinking about something else ‘is our gas and electric on the right tariff?’ Or ‘have we got enough milk for tomorrow’s cereal’ or ‘why did big girl mention xyz eleventy billion times earlier, is it a problem?!’

Honestly, my brain has no filter, my filing cabinets are full and my virus protection is failing, the blue screen of death is fast approaching. And I still have no eggs for the Easter bunny to hide!

Consider the blog my ‘to do’ list, I’m hopeful I just freed up some disk space 😉

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