autism

All posts tagged autism

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? 🙂

 

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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!

IMG_20160112_1131173~2

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!)

IMG_20160112_1133330~2

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

I’m ONLY the mom!

Published October 19, 2015 by thefamilyof5

So things are not really going to plan at High School. My big girl is finding it very difficult and school are finding it very difficult to see past her fake smile and provide the support she so desperately needs, which is mostly free I’ll add, just a little bit of empathy and lot of understanding and a little forethought is really all she needs, We’re not talking laptops and 1:1 staffing here. She’s coming home tearful and sad and feeling inadequate, I preferred it when she was angry I think, at least she still seemed to have some fight left in her. In just under 6 weeks of big girl being at high school, communication between home and school has become quite strained. I’ve been labelled as the neurotic parent that makes shit up. Its all in my head it seems!

So, there is a meeting that’s been arranged by the Senco at high school. Its a very important meeting. Its a meeting to discuss how to support my girl I’m told. Everyone will be there, all the professionals. A lot rests on the out-come of this meeting. Among the lucky attendees will be the autism support services, the head teacher from primary school, our post adoption social worker, even someone from the local authority SEND team is going. Its going to be a big meeting I expect, they’re going to need a really big table, lots of chairs to I expect, probably someone on hand to make tea and coffee and serve the odd biscuit. Everyone will sit around together, work together and discuss my girl, her needs and how they can work together to best support her. Id imagine someone will take minutes, which is a bloody good job really because according to the Senco, I’m not invited, apparently its a meeting for professionals and as I’m ‘ONLY’ a parent, he feels it wouldn’t be ‘appropriate’!

Happy National Adoption Week Everyone! #NAW2015

Must it always be so hard!?

Published August 27, 2015 by thefamilyof5

I’m starting to buckle a little. You’ll have noticed that I haven’t blogged much lately and that’s partly because we’ve been having a great summer and partly because my head is so stressed out with things that are going on in the background that I struggle to focus long enough to switch my laptop on never mind actually type something.

So here goes, I’m going to off load. If you haven’t followed my blog for a while then this probably wont make much sense to you, If your one of those super bored people that has nothing better to do than read my dreary ramblings, then it will probably, perhaps, maybe, make a bit of sense. Hopefully. Or not.

At the beginning of the year our DDP therapist suggested we look in to having Big girls mental health assessed, her constant high anxiety levels are a huge worry and she may need medical support with this. So I made some calls. 46,799 calls and several letters later, having been passed back and forth between CAMHS and our local ASD service provider for over 6 months, CAMHS finally called today and agreed to see her, the ‘nurse’ is adamant she MUST attend the 1st appointment and is unwilling to see myself and our therapist in the first instance. So not only will this be even more anxiety for Big girl, and quite possibly unnecessarily as there isn’t anything she can tell them that I cant (in fact she wont tell them anything ‘real’ anyway), but the appointment will mean missing time off school after only having being there for a few weeks

The school we chose for Big Girl last year is not a local catchment school. Adopted children are given priority admissions to make it easier for parents to choose the RIGHT school to meet their child’s needs. So we did just that. However, what I didn’t know is that this did not come with provision to support a child getting to the school they need to attend. So I applied to our local authority for help with transport as the school run for all 3 girls is a logistical impossibility. I was told I had to wait until the school place was made official, so around March/April time. They turned down my application. The 5th of August I was advised to appeal. So I have. I’m still awaiting the results of that hearing. There is 2 weeks left until the start of school and I still have no idea how I’m going to get them all where they need to be for the right times. When I applied for an EHC plan for Big girl last year I mentioned to the worker that was completing the assessment that I’d applied for transport to get Big girl to the high school we’d chosen. I wasn’t informed that it could be part of the EHC plan. Instead I was left to fight another battle. Its now too late to get transport incorporated in to her EHC plan apparently.

The placing authority provide us with an adoption allowance, its a sum of money that ensure’s I’m available for the girls appointments and therapy. Its not a lot but given that the girls high level of needs have meant that I’ve been unable to return to work as originally planned, its been a huge help. Over the last 2 years the placing authority have reduced this dramatically, even though our household income has not changed and the girls needs have increased. I received a letter 2 weeks ago, they’re reducing it again, massively. Another appeal.

I saw our GP in July. I requested some urgent help for Big girl for ‘girl stuff’. She received an urgent Pediatric gynecology referral. The referral was ignored. I chased it up. It was ignored some more. Finally we got an appointment for next week (late, but kinda perfect because it was before she goes back to school). I had a letter today. Its been cancelled and re-scheduled for the middle of October. Apparently 4 months is urgent!?

I discovered the other day that the Key worker, at the new High School, that’s been assigned to Big girl as part of her EHC plan has also been assigned to another child who also has a high level of need. So each morning this ‘key worker’ is supposed to be greeting my super stressed compliant daughter and another child who’s needs are displayed far more outwardly (I know this because I’ve met the other child). So my super compliant Big girl who should be starting her day calm and making a connection with a trusted adult, will instead no doubt end up soothing the worries of another stressed out child alongside ‘her’ key worker, whilst her own fears go un-soothed and her day begins with anxiety. No one at High school is currently available to clarify things or reassure me that this isn’t the case and that the Key worker assigned to big girl will in fact be able to offer her undivided attention as I was led to believe. They probably wont be available until the day before school starts.

The day before school starts we get to meet Big girl’s new tutor for the first time. Someone in their infinite wisdom thought it was a good idea to put Big girl in a tutor group with a tutor who was going maternity leave in July. So the extensive transition plan that we worked through for months and months, couldn’t involve meeting her tutor. I honestly am not making this stuff up!

Then there’s the worry about how Middle girl and Baby girl will settle back in to school with their new teachers with the knowledge that Big girl is somewhere else.

Its also time to review both Middle and Baby girls ‘working diagnosis of Autism’, and given how much I upset the local ASD service provider trying to get Big girl some help, I suspect they’ll be wanting get me off their books and out of their hair. It certainly felt that way when I called them today to make the appointments.

Then there’s the possibility that I’ll be applying for an EHC plan for Middle girl soon, really not wanting to leave it till year 6 like I did for Big girl, year 6 is stressful enough I think.

And my cat is poorly. Again. She’s a sickly thing but I do love her so.

This is just the stuff in my head.

Then there is ‘life’ with 3 traumatised children to manage.

Why does everything have to be so hard. I just want to be a mom.

Photo Challenge #FO5photo Day 21

Published December 11, 2014 by thefamilyof5

Today is day 21, the theme for today is ‘Reflection’.

Been an awful day. My morning started with a tantrum from big girl before school.

Then a very draining meeting with EHC co-ordinater that involved me spending 2 hours telling her about all the awful things that big girl endured during her time living with her birth family, and then again in foster care, and then describing the effects that all this has had on her and in-turn the effects it has on all of the family. Thinking about, and talking about so much trauma and heartache is more draining that I thought.

Then tonight, after school, another 2 and half hour tantrum from her.

So this is my feeble contribution, the reflection of light on my chocolate (self care) wrapper………………

My tea tonight.......... :(

My tea tonight………. 😦

 

 

My little book of worries…………..

Published December 10, 2014 by thefamilyof5

Inside my head I have a book, it contains all my worries, it seems to be rapidly growing!

I have an appointment tomorrow with the lady co-ordinating the EHC plan for big girl, I must remember to tell her everything!

I have an appointment with the pediatrician next week about all 3 of the girls anxiety levels and the knock on effect its having on their sleep, which seems to be getting worse with age! I need to write an email to the pediatrician so she/he can have all the sensitive information without me having to say it all in front of the girls.

We had a letter today notifying us that middle girls teacher is leaving and a new teacher will be taking her place in January, I knew this was going to be happening, I just didn’t know exactly when. So I need to ensure that school, sometime over the next 7 school days before they break up, do some work with middle girl to prepare her for this transition. Perhaps a photo of the new teacher and an informal meeting with her before school recommences in January!? Middle girl is already worried, ‘what if she shouts’ she asked me tonight. I’d also like them to pass to the new teacher the information (letter to my teacher) that was given to each of the teachers at the start of the school year so that she can also ‘know’ about Middle girl before school commences.

This new teacher (if staff/classes remain the same) might also be Baby girls teacher next September which means they will also need to be thinking about supporting her next year with that transition. I’d also like some thought in how the year 5 teacher (again assuming there are no changes) will support Middle girl next year as I’m not sure the approach she had with Big girl last year, will work with Middle girl next year.

Big girl goes to High School next year (hence the application for an EHC plan), there’s been a lots of talk about supporting her with the transition but I think I need to know more, like how and when etc

With big girl changing schools, Middle girl and Baby girl are also going to need a lot of support with this. It will be a big step for them to be in a separate school. The bad dreams about ‘sisters getting lost’ have already started for Middle girl and I’m convinced this is linked to her knowing that Big girl is going to be changing schools.

Then there is all the other day to day stuff, like Christmas Plays, Sats, Therapy, IEP reviews, Letterbox contact with birth family, what to cook for tea!

Oh, and its Christmas soon……………..

I hate being THAT mom!

Published December 4, 2014 by thefamilyof5

I hate being the mom that struggles to find something positive to say, but its getting harder and harder.

Stress levels are soaring here right now, the girls and mine.

I think the trigger (this time) is ‘School Plays’. I’m not sure why these have become an issue the last couple of years, at the previous school they all managed the school plays (minor roles) without a hitch.

Baby girl pulled out of her play altogether last year, at the last minute, this year she’s given some notice and decided again not to participate finding a background (helper/off stage) role more manageable. Big girl has managed to participate in her plays but this year has asked to be excluded from the ‘bows’ at the end as she finds them too overwhelming. Middle girl has told me she’s happy to participate in her play but feels frightened when she’s on the stage.

But in reality they’re not managing……….

Big girl is stroppy and stressed and not sleeping, doesn’t sound any different to any other day but its a bit more intense at the moment, particularly on days after they’ve ‘practiced’ their plays. Tonight she stamped her feet, banged her door and shouted ‘I want to kill myself’. (overwhelmed)

Middle girl had a therapy session today (which is slow going but they seem to be managing it fine), I collected her at lunch time from school, I hadn’t even turned the car around before she was refusing to speak to me (control). I hadn’t bought a medal she wanted to show the therapist, she hadn’t asked me too. She then spent the entire session rocking manically and refusing to speak (dysregulated).

Baby girl, well, tonight she’s stood with her arms folded in a mood, stamped her foot and given me the death stare (control) whilst telling me she’s rubbish and everyone one at school hates her (low self esteem), even though I reminded her that she came out of school this evening chatting and laughing with her 2 friends. She also told me that she’s been participating in part of her play because she thinks her teacher will shout if she doesn’t (insecure). (her teacher wouldn’t shout, this is just an example of how unreasonable her ‘thinking’ is when she’s stressed). She also said the story line scares her, its A Christmas Carol (immature/dysregulated).

They practiced their school plays this morning.

Each morning we’re greeted by a lovely teacher who’s working so hard to help the girls. Every morning I find myself having to tell her about some sort of crisis or drama. Today it was that middle girl is terrified when she’s on the stage and to ask her if she can perhaps give her a little thumbs up, tap on the shoulder, check in with her etc. Tomorrow it will be to tell her that baby girl has been staying on the stage after putting the apparatus in place (her job) because she thinks her teacher will tell her off for sitting back down afterwards. I’ve no doubt Monday there will be something else. There is always something…………..

“Middle girl is worried because her p.e. day has changed and she doesn’t know why, baby girl is worried because she has fallen out with her friend and thinks she has no one to play with now, big girl is worried because someone shouted in class today and it hurt her ears, middle girl is worried because she doesn’t know why there was no science yesterday, baby girl is worried because someone told a dinner lady she pushed them but she didn’t and she thinks she’s in trouble, big girl is worried about the book your reading in class, middle girl was hot in class yesterday and came home angry because no one noticed, baby girl is worried because a man came in to school and she doesn’t know who it is, big girl is worried because she didn’t understand her homework, middle girl is angry because the girls wouldn’t let her join in at lunch time today, baby girl is worried because she thinks she’s going to see a real volcano next week and might die!” This is probably a good representation of a couple of days worth of ‘chats’ I have each morning!

I hate being THAT parent!

In reality it is all anxiety, lots and lots of anxiety about anything and everything and it seems to be getting worse as they get older and I’m not sure why, maybe because they understand more, or maybe because they’re expected to understand more and don’t. You only need to search the word ‘stress’ on my blog to see this is a common theme. Is this Autism? Attachment/Trauma? both?

Its that old chicken and egg question, are they not sleeping because they’re anxious or are they anxious because they’re so tired.

What I do know is that this level of stress isn’t sustainable, for any of us.

I’ve linked this post up with #WASO over at The Adoption Social!

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