autism

All posts tagged autism

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.

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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 😉

Big girls first lesson.

Published March 18, 2018 by thefamilyof5

It’s been a really tricky few days here with big girl, it’s been building up for several weeks. She’s been gradually distancing herself from anything and everything family related. No interest in her sisters, or speaking to any of us, no interest in making the intricate models she’s grown to love, nothing. Her only interest has been school, and school homework/practise. Unusually, I had absolutely no idea why all this was happening. Usually I can identify a specific trigger but as this was a gradual build up (again unusual) I really had no idea what was going on.

A brief chat about something Tuesday quickly escalated to violence and aggression. It became super apparent that we were all still traumatised from big girls violence from last summer/autumn. We all crumbled under the strain quickly.

On Friday big girl came home from school in a state I can only describe as ‘manic’. I’ve never seen her behave that way before, MrFo5 and I were ready to call an ambulance as we were convinced she was having some sort of mental health breakdown. She was laughing hysterically whilst shouting aggressively, demanding me to ring a social worker to take her away, not making sense, incoherent speech, it was scary to see.

4hours I talked with her, and after 4 hours she was a little more like herself again whilst I resembled goodness knows what. It was an exhausting 4hours.

I now know what Overwhelmed looks like. She was completely overwhelmed. There had been an event in school and she’s found it scary and overwhelming. She told me about various other things that she finds difficult in school, noisy dinner hall, relaxed boundaries, and feeling a bit lost at break and dinner times were the most notable. She didn’t tell us before because she doesn’t need us now she has friends (she said). Saturday she remained hostile but was markedly calmer.

Sunday, today, I shared with her a theory I’d had at 3am whilst my brain was frantically still trying to process the previous 48hrs and some of the garbled nonsense she’d blurted out on Friday, particularly about peers talking negatively about their parents.

My theory was that big girl is now actually making friends, she’s socialising with other children, having actual conversations and social interactions, something she’s never experienced before. The friends that she’s socialising with, even though it is a special school, are still way ahead of big girl emotionally and socially. She may be leaps ahead of her class academically, but that’s where it ends.

So in reality she’s learning what its like to be a friend as a 13yr old, without having learnt to be friends as a 6yr old, or a 10yr old so she isn’t familiar with the friendship/peers/being a kid rules. All kids bitch about their parents at school, all kids make out that they have the worst family ever, but most go home, snuggle on the sofa, watch TV, chat, share some Pizza and just generally do the family thing. The bitching stuff in school is just showing off, bravado, but of course, big girl doesn’t know this.

She seems to have a friend that is particularly vocal about her terrible family and how awfully they treat her. Big girl likes her, wants to be her friend so she copies. She doesn’t know the rules though. She doesn’t know it’s just showing off and she has been convinced that this friend really hates her family, really goes home each day and has an awful time. So big girl did the same she said. Only she doesn’t have an awful family that treat her badly, she generally quite likes her family, but to ensure she is just like her friend and can be liked even more by her new friends, she continues the showing off game at home.

I shared my theory with big girl and after a little bit of thinking she told me about some of the other things this friend has said, and photos she’s shown her, that actually show that she is very much loved by her family and very much happy to be with them. She began to see that what the girl was saying, wasn’t necessarily true, just a thing that kids do.

Today she has been lovely, she has played with her sisters, sat with her family, laughed and joked and listened to music with us. It’s been a good day, the best for months.

I’ve encouraged her to begin a new trend at school whereby it becomes cool to openly like your family, because she does, I’m hoping the teachers jump on the idea and use it to bring more positivity in to the classrooms and playgrounds.

Here ends this lesson on ‘showing off’ for big girl, until the next one, there will be many more lessons to come I’m sure.

Looking back…..

Published January 6, 2018 by thefamilyof5

Those of you that have Facebook will know all about the ‘on this day’ function. It’s a feature that reminds you of posts from ‘on this day’ over the years. Today Facebook reminded me of a photo I took of the girls at a family party, it was about 6 months after placement. They were settled, happy and attached so going to the party seemed a great idea. This party was our first big family gathering, we bought new dresses and shoes and were excited about being seem out as a family of 5.

I remember commenting on what a lovely time the girls had, they’d danced, enjoyed a buffet and smiled a lot. I remember the journey home, it was very late but none of the girls slept, they were just so excited I remember thinking. They were so well behaved the entire night. I felt so proud.

Then Facebook showed me a photo from the party. Their fake and forced smiles, the look of terror in their eyes, their body’s ridged and wary. I feel ashamed for now seeing it.

I realise now that even after 6 months of being their mommy, I didn’t know. I didn’t know their faces well enough to be able to truly read them, I didn’t know their body language enough to be able to understand it. I thought we were settled, attached and out the otherside. After 6 months of being a family, we were all still strangers, and they were still terrified, I just didn’t realise that at the time. 

That was over 7 years ago, we’re still getting to know each other today, they do now thankfully feel safe with us and we know them well enough to know when they’re not ‘ok’ and they know us well enough to know we won’t hurt them, but attachment, that thing that I naively thought we’d mastered in a couple of months, well, that’s still a work in progress. 

Hello, is there anybody there?

Published November 20, 2017 by thefamilyof5

Its been a while eh, I’ve so much to update you with, especially if you haven’t been following my Facebook page, or Instagram.

So. I’ll break it up in to two parts.  Before July & since July.

Before July

Things were brilliant. The girls were calm, I was calm. They were enjoying their tuition and learning. We were making some lovely memories. Our DDP therapy had mostly stopped, a few sessions with Big girl, but sessions mostly just involving me with the focus on giving me a space to reflect therapeutically. They were attending a dance class and a cookery class and had joined our local ParkRun community event.

Baby girl was really benefiting from having me near, her attachment getting more and more secure. She was also beginning to show signs of maturing. Still clingy, but growing up socially. She was having deeper thoughts that didn’t just revolve around herself and food. She remained adamant however that she would never be going back to school. Ever. Hmmm we’ll see young lady!

Big girl was plodding along. Her difficult ways remained, our attachment was still an issue, especially in respect of school work/home education, but overall things were pleasant and she was happy to work for the tutors. She even found a new love of maths. The issues we faced were simply with regard to her education, she was resistant to do any work for me. It was just like the homework difficulties we faced when she was in school. We decided it was time to look at getting her back in to formal education. She hadnt really ‘grown’ as much as we’d hoped and a more formal setting with social opportunities she could manage, in an environment that understood her was what we felt she now needed. She hadnt grown enough to manage mainstream education as we’d planned so that left us with special school’s. I spent a few months researching local SEN schools and found the one I thought she could manage. I let the SEND team know of our request towards the end of June.

Middle girl, well, what can I say, she has absolutely thrived since we removed her from school.  She’s grown way more confident, her speech is brilliant, in fact some days you cant shut her up, she’s been enjoying imaginative play, messy play, she’s been dancing and singing and being funny, she’s funny, who knew!? She has really started to open up, trusting me with some of her feelings, trusting me to say ‘yes’ when she wants something, trusting me not to reject her, our attachment really beginning to blossom.

Since July.

Late spring the therapist and I agreed that the DDP hadnt been as beneficial as we’d hoped, especially for Big girl. We agreed that some 1:1 basic life story work might help her move a few obstacles that would then allow her to engage in the DDP work later on down the line. Big girls attachment was a big focus, always had been, and the root to all of the small difficulties we were facing, including her reluctance to receive an education from me.

So the work began in the first week of July. It immediately became tricky with her first meltdown less than a few days later. We’d seen nothing like this since she was in school. A few more sessions took place and the meltdowns returned, each time increasing in severity. She became violent again. Always towards me. Baby girl and Middle girl were scared again. And angry that this scary behavior from big girl had returned. No one could understand it, not even big girl. She was being swept under a wave of anxiety that she wasn’t expecting, didn’t understand, and didn’t know how to escape from. She was fighting to control the waves but they just kept coming.

The application for the SEN school slowed down because of the end of year and then of course the school holidays. I went to a meeting to talk about her needs and let them know the importance of her moving to the right school. Especially now, the return of her violence reminded me of how difficult things had been when she was in mainstream school and not coping. We couldn’t afford to get it wrong again. None of us would survive that again.

It was around this same time that our replacement post adoption social worker was assigned to us, our previous one had retired at the start of the year. It felt like she had come just at the right time, had she been assigned to us a month before, we’d have sent her packing, but instead, just like Nanny Mcphee, she was there just as we needed her. Id like to say that she made everything better but I cant. I wont go in to details but needless to say for the first time ever I felt judged and blamed for big girls difficulties. So much for Nanny McPhee!

Things got worse, my bruises got bigger and new ones began appearing before the old ones had time to heal. She was bigger than last time, stronger. Baby girl and middle girl were totally traumatised and big girl had succumbed to the darkness. She was feeling more and more unreachable as every second passed. She was angry, putting her self in danger, defiant, obstructive, self harming, arrogant and generally just bloody awful. We’d opened Pandoras box inside her head, she didn’t know how to close it, she wouldn’t let us help her close it and each therapy session served only to open it more. She wasn’t ready. She was completely overwhelmed, filled with hatred and anger I’ve never seen in her before, she was barely recognizable. By September we were all on our knees and we needed real help.

Our therapist was reluctant to believe that the therapy was the cause of all the violence and aggression, since they hadn’t apparently discussed anything difficult yet, so she wanted to continue. She nor the social worker were able to accept the impact that the volatility and violence was having on baby girl and middle girl (never mind the rest of us), nor did they seem to understand that we had no respite options and very limited child care. we needed help. It was really 24/7. During a meeting with the post adoption team and our therapist they all apparently agreed that the issues we were having were simply ours, nothing related to attachment or trauma, we were simply struggling to parent a typical teenager and needed generic parenting advice. There was nothing they could do. In other words, we screamed for help and they put their backs against a wall and blamed us. Case closed. A referral was made to a generic parenting support team and we rang CAMHS in desperation.

We had the usual difficulties getting access to CAMHS, because big girl has a diagnosis of Autism everything is instantly blamed on it and we get told ‘its normal autism behavior’, this is before they even meet with us, never mind with big girl. We protested and they agreed to meet us to talk through the difficulties. They agreed after lengthy discussion and a few tears from me that it sounded like big girl was in fact overloaded with anxiety and would likely benefit from some medical support. We would need to wait for another appointment.

The SEND department have agreed to a SEN placement for Big girl (she has no idea yet) but do not agree that the school we chose is the best one to meet her needs. Our nearest generic SEN school is adequate they feel and as such will not provide transport to the school we need for her. Without transport she cant go. She wont last a week in the generic school they’re proposing. So we’re stuck. We need to find a way through. She needs an education. She wont accept an education from me. We know the consequences of putting her in the wrong school. She’s too fragile for us to get this wrong. Things have become even more difficult with her at home and at this rate we’ll need a residential school or foster care. This now needs to be sorted out fast but no one seems to be in a hurry.

Since the start of the life story work in July, big girl has either been angry or manically happy. Neither is pleasant. Whilst she’s never been easy, she has always been respectful, kind and gentle. Never one to break rules or be cheeky really. We haven’t seen the big girl we’re used to for many months now. She’s still in there though, I haven’t given up hope of that.

This weekend, after another long week of her anger brewing and tensions increasing things reached a peak. She hurt us and then she put her self in danger by climbing on to a roof, we were left with no alternative but to call the police for help.

The policeman arrived, lovely he was, very gentle and kind and understanding. Whilst the Sunday roast, that I’d popped in the oven in an attempt to maintain some normality, roasted away in the oven, he tried to calm down big girl, reason with her and ultimately diffuse the situation. She finally came indoors but she wasn’t calm. He stayed for over an hour, almost long enough to join us for dinner. He apologised that there wasn’t much that he could offer by way of practical support. He could see she was a child struggling with her emotions. She remained rude towards him the entire time. He made a ‘referral’ which he said should bring help, or at least get us some much needed attention. Baby girl and Middle girl, whilst they still found the entire ordeal traumatic, they coped surprisingly well. He left. We ate dinner, she chose to eat in a different room to the ‘stupid idiots’ otherwise known as her family.

We’re all still feeling quite shell shocked today unsurprisingly. Big girl hasn’t really been able to reflect or even really calm down, we’re all still ‘stupid idiots’ (worst words she knows) but she isn’t hurting anyone, for now. She’s angry at the bruises to her foot and hand that she sustained whilst kicking and punching the (unlocked) double glazed door. She’s annoyed that we removed her from the house, to the safety of the back garden (nearest place), to stop her from hitting, kicking and biting us more. She doesn’t really even understand why we’re expecting her to say or feel sorry. She isn’t able to acknowledge her own actions at all or look at me for fear of seeing the fresh bruises she left on my skin. Again. She is feeling ashamed I think, but doesn’t understand that feeling. She knows only anger or happiness and she isn’t feeling very happy right now. None of us are.

The lady from the generic parenting support place is due tomorrow morning, we might actually terrify her. If she brings a sticker chart god help her!

Despite the events of this weekend, CAMHS are unable to see us any sooner than the already scheduled appointment next week they say.

So that’s us. Hows your year been? 🙂

 

How are you feeling today?

Published January 16, 2016 by thefamilyof5

Emotions and feelings is something that middle girl and big girl really struggle with. Outside the safety net of ‘happy’ and ‘sad’ their emotional vocabulary is very limited. They also struggle with recognising emotions in others as well as themselves. Baby girl on the other hand knows all the different types of emotions, but sometimes isn’t able to put them in to the right context and is pretty oblivious to the idea that anyone else even has any feelings.

So I thought we’d incorporate some work around feelings and emotions in to our learning, The girls had great fun making these flip books and colouring them in.

We had a little play with the books and looked at all the different emotions we could make with them. Then I set them a task, I asked them to make a face each, decide what emotion the face was showing, give the face a name and then make up a story to go with it, they had to think it all up in their heads, no help, no sharing ideas.  It took a few attempts but we got there.

They  then shared their emotion/person/story with everyone else. It was so much fun, we laughed a lot!

Baby girl made Bob, Bob was soooo angry because he’d made a special trip to the lego shop and when he got there they didn’t have any lego!

This is middle girl, she made James, James was shocked because he went to his bedroom and found that his little sister had taken all of his toys!

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Big girl chose Liam, Liam is feeling sleepy and happy apparently. He’s happy because he’s going to a party today and sleepy because the excitement kept him awake all night! (The face she pulled to demonstrate sleepy and happy was toooo funny, I wish I could show you!)

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We’ve kept these books, I intend to re-visit this regularly with the hope of improving big girl and middle girls ability to recognize and express their own, and other peoples, emotions and hopefully baby girl will start to realise that actually, she isn’t the only person on the planet with feelings!

Ive linked this up with #WASO over at The Adoption Social where you’ll find loads of really great adoption blogs to read 🙂

*edit I found the idea here : http://blog.theautismsite.com/smarty-teaching-emotions-booklet/?utm_source=aut-autaware&utm_medium=social-fb&utm_term=010916&utm_content=link&utm_campaign=smarty-teaching-emotions-booklet&origin=aut_autaware_social_fb_link_smarty-teaching-emotions-booklet_010916

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