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Friday, 29 March 2013

Easter cupcakes and birthday requests

Tonight I asked Sasha what she might like for her birthday this year.
Instantly she replied 'a house map. A magic house map so I can fly around with it'. 
Understandably, I was a little concerned that I might not be able to produce such an interesting piece of equipment, so I asked again.

'Four watering cans. So that we each have one and all water the plants together in May.'
Lovely, except her birthday is not until June, so we'll have to explain that one in a couple of months time...

'Anything else?' I asked.

'Some pens and pencils and crayons all for myself please'.

Ah, she melts my heart. Of course she can have these... but still I have no idea what to actually get her!

Ho hum. Before you go away to think of some great ideas for me (answers below please!), I just thought I'd share with you the Easter cakes I made with the girls for school this week. We had great fun!

Easter cupcakes 2013

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Thursday, 21 March 2013

Choice: Free School or Mainstream, what would you do?

So. The next big thing in my diary (how will it ever top Westminster I wonder?!) is that on Monday I will be attending a conference locally. It's all about schooling - specifically, schooling and education for SEN children (yep, those three letters again, Special Educational Needs).

Getting this education lark right for my children is my number one priority in life at the moment. After all, such a large amount of their time is spent in school and it really shapes who they are. Most parents worry about it, and some stress more than others - not always in relevant proportion to how their children are doing at school.

Parents in our town are pretty lucky as there are several good schools to choose from - and even the worst school isn't actually that bad. I wish our choice was as simple as that. 

We don't actually know what level of schooling will be suitable for Sasha in 5 years time, and we need to be prepared for any scenario. It's not being pessimistic, just realistic. What I am 99% certain of is that it will not be the relatively straightforward decision that we will make for Tamsin. I also know that I need to find a school suitable for Sasha - in my head and my heart I know that homeschooling will not be an option. So many parents are forced into homeschooling these days (although there are of course several families who homeschool through choice) because the school their child was at is just not doing it right, not doing enough for their child, not set up to cope with the 'different' behaviour.

I digress. Back to the conference. I have a dilemma and I'd love some advice and feedback.

There are two strands to the discussions. One will be about the possibility of setting up a Free School in the area to provide for 'our type' of children. This may be done in conjunction with the National Autistic Society who already run 7 other autism specific schools but who have now also successfully started a Free School for higher functioning autistic children in Reading (Thames Valley Free School opened Sep 2013. Another in Lambeth is planned to open Sep 2014). So this is not a pipe dream but a project waiting to happen if enough parents support it locally.

The other will be about the possibility of improving services for autism in current mainstream schools by pushing for 'Autism Bases' or 'Inclusion Units'. 

On the face of it, it sounds like an easy decision to make. Especially as we are in the position where we have an 'NT' (Neuro Typical) child who will definitely attend mainstream. I think a majority of parents would rather their children were included rather than sent away to a 'special' school if at all possible. We would love for Sasha to be at the same school as her sister. 

But what if it becomes apparent that the topic of inclusion units has been discussed with the local authority for years and years, with conversations going round in circles, and generally coming back every time to the lack of funding to make any great difference? On top of that, the 'whispers' that a decision was made to trial autism bases or inclusion units, but when local school governors were approached to see which schools could champion this, the idea was batted back by ALL of them with the refusal 'but we don't want that here'. 

As a Governor myself, I'd see it as a way to improve a school and offer something new. I believe that education should be all about the children and helping them all individually. I think the reality is that for most others not already involved in the world of Special Needs, it's seen to be a headache. Extra work. And what school wants to gain a reputation as being good with Special Needs, right? Then they'd just attract more of 'them'! A sad but true reflection of how things stand today.

So given that extra information, the choice now becomes less clear cut for me. Now though, I have to throw my energies into one route or the other, I can't hedge my bets. Both will have their own challenges, but one may have higher obstacles.Which path would you take?


Oh and if anyone would like to nominate me in the Britmums Brilliance and Blogging Awards, category Family, I'd love it if you clicked on the badge below and entered my URL http://www.stephstwogirls.blogspot.co.uk/ pretty please! Thank you :)


NOMINATE ME BiB 2013 FAMILY
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Wednesday, 20 March 2013

Westminster, eh? Chatting to SEN Minister Edward Timpson over a cuppa...

So what's Westminster like? Well, quite exciting really.  I was lucky to have been invited to join the Tots 100 Blogger trip to visit Edward Timpson, Minister for Children and Families, to discuss the changes to the Children and Families Bill which will affect our SEN (Special Educational Needs) children.

The Department for Education is in a large shiny new office, full of desks and chairs and meeting rooms. We were whizzed upstairs in the lift by Sarah, a lovely lady whose job it is to reach out to 'the public' and we were offered a cuppa whilst we introduced ourselves to the other bloggers present. 

There were 10 other lovely bloggers there, who have children with a range of special needs - between us we covered deafness, blindness, sensory issues, heart conditions, dyslexia, autism, Aspergers, and medically complex yet undiagnosed. It was very apparent as we all discussed our 'journeys', that we generally had a lot in common. Mainly, the fight to provide the best for our children.
SEN Bloggers meeting Edward Timpson to discuss Children and Families Bill
After 30 minutes of getting to know each other we were then informed it was 'time' to meet the man himself, and we all waited very politely outside his office whilst his previous meeting ran over time. He dashed out, presumably to 'freshen up', and then he was back with us, all seated around a large table, with his aides lurking in the background.

I'll admit I felt very important. Maybe that was because we were somehow made to feel like he was very important (which of course he is). 

We were invited by Mr Timpson to tell our (short) stories and come up with one question or point that we'd like addressed. I had three, but cleverly managed to roll them into one... My goal in life for Sasha is the same as that for my other girl, and just what most parents want for their children - to be able to achieve to her full potential. To do that, she is going to need just a little more help from education, health and social services than the 'average' child. I think there's a strange attitude in this country that seems to suggest we are being greedy in asking for that. I don't ask for that kind of extra help for Tamsin, as she plainly doesn't need it. However I do have to not only ask but generally fight for any kind of help for Sasha, and that just doesn't seem right.

I took notes of the key points as Mr Timpson listened to each of us in turn, and I can honestly say that every comment which was made was a valid one and ones that I think all parents of special needs children can connect with. Certainly all of us in the room were nodding our heads as if we shared the same experiences. Our worries and wishes were as follows:

Nurture groups. This came out as a best practise idea which has been proven to be highly effective. The idea would be to hold these groups within schools, to work on emotional and social wellbeing of those who need it most. If time is given over to these young children in the first place to fully understand their needs, which may not actually be driven by a problem with learning per se, less time will be lost from teaching and they are therefore more likely to achieve their potential. 

Culture change. As I touched on above, the local authorities seemed to be locked in an old-fashioned way of working, with attitudes of 'them against us'. The way forward is definitely person-centred, where the child with the needs should be at the centre of the circle and all parties should discuss together (child included, if old enough) what outcomes, small or large, are wanted for that child. To get everybody thinking like this will be a huge shift, and the example will need to come from top down as well as being fed from bottom back up.

Communication. There are too many areas currently which lead to misunderstanding. SENCOs (Special Educational Needs Coordinators) in schools are often not easy to get hold of, with many having full time teaching roles and therefore not available for those parents that need them. Budgets which are devolved to schools specifically for special needs are not transparent to those parents whose children could benefit from them the most. This links in with the previous point, and the situation could be helped by working in partnership.

Early Intervention and Early Support are key. Families are often, mostly in fact, turned away after being given a diagnosis with no real support services to turn to. Those who never get a specific diagnosis (SWAN - Syndrome Without A Name) are not offered anything at all. However those families who have children born with a disability are generally given enough support to make the difference.That brings us on to the next point...

Keyworking. For all these changes to take place, and for the load to be shifted off the back of the special needs families, an impartial key worker should be allocated to work with each family and with all of the services, to ensure that the child remains at the centre of the plan.

Statementing process. This is seen as adversarial at best currently. Parents of special needs children spend their lives fighting on top of what can be very stressful times just coping with those needs at home. The new Children and Families Bill is proposing a whole new process to replace statementing, and this process (the EHC plan, which I'll have to cover in another post) is currently being 'trialled' and 'worked on' by Pathfinder families (of which we are one, again to be covered in another post shortly) in various counties. We need to ensure that the new process is less of a fight, but also that it doesn't become more 'woolly' in that change.

As far as the Bill itself goes, we believe it's important that all 3 services - education, health and social care and involved in the new EHC plan - and held accountable equally. Currently it is still education-led, although the steps towards making the other services involved are appreciated. It is also important that the issue of 'timing' is addressed, to make sure actions are taken when they need to happen for the child (which is generally immediately). If no timescales are locked down, then parents can be left in a never-ending circle of nothing actually happening for a very long time - and seriously this could stretch to years, which is totally unacceptable. There's also a huge need to ensure there is enough resource to provide the service - in our county currently, I've heard from other parents that there is over a year's wait for certain CAHMS services. Can you imagine how much worse the behaviour, or family life, can get over the course of a year with no help or intervention?

Mr Timpson listened intently to all our messages, and gave us all time to talk - so much time in fact that he didn't really manage to do much speaking himself! Crafty, these politicians...

Much better though, than if we'd have had to sit there listening to him wax lyrical about what he was putting in place without getting any feedback. I think there's always the nagging thought at the back of the average person's mind that these types of situation are just PR exercises. However Mr Timpson really did listen, and ask us a couple of relevant questions, and I left the meeting feeling very positive that at least some of our thoughts will be taken on board and help to shape the Code of Practice.
Timpson for Prime Minister, I say! Watch this space......
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Tuesday, 12 March 2013

What does Autism change?

One of my favourite bloggers, over at Life With An Autistic Son, recently posed us autism folk a question.

How has having a child with autism changed you as a person? 

Or, phrased another way, does parenting a child with autism change who you are? Or does it change who you may have become?

To understand the changes, you need to know what came before. Before children I would have considered myself easy-going, a 'sit-on-the-fence' kind of person who liked a quiet life and hated confrontation. I was extremely lucky with my lot, and coasting along nicely, thank you very much. I wasn't even sure I wanted children originally - I never felt I had that particular maternal instinct, wasn't sure what I would do with children or how to 'handle' them. I had a great life, good jobs (yes, definitely more than one...), plenty of holidays and work trips abroad. Of course I can pick some of the points out of the list below, and say that everyone who becomes a parent would say they are now 'more tired' for example, but in that case you can read 'More tired....and then some'.

Now, I am:
  • A whole lot more knowledgeable about Special Needs, but still not even half way there
  • More stressed
  • More determined 
  • More patient 
  • More aware of others’ needs 
  • More flexible – but mostly with relation to our ASD girl’s needs 
  • More understanding 
  • More aware that you never know what problems other people/families are facing 
  • More tolerant 
  • More paranoid about what others are thinking 
  • More busy (I think 'busier' may be grammatically correct, but it didn't fit the list smiley emoticons )
  • More tired 
  • More emotional
 I am also: 
  • My child’s greatest advocate 
  • A fighter 
  • An expert form-filler 
  • Keen to spread understanding of autism in any way I can 
  • Less judgemental
  • Less bothered by what others think (I know, I know, that's contradictory) 
  • Often in meetings concerning my ASD girl 
  • Getting used to the rollercoaster that life has become 
  • Less likely to take time for myself 
  • Less likely to eat out in restaurants – something I'd have loved to do with my family 
  • Working with a company who provide help to families of children with ASD/ADHD 
  • Wanting to help other families who are realising their child is different 
  • A keeper of lots of files and paperwork that I never imagined I’d have 
  • Keenly aware of how autism affects the whole family, particularly siblings 
  • Extra especially keen to make sure I am doing the best job I can with my non-ASD child 
  • Constantly thinking about the future and about how we can make it the best it possibly can be for both our children 

My blog has been an outlet of thoughts and hopes from the start; a way of letting others know how it really is, a way of trying to increase understanding. I am fairly sure I'd never have started this blog without our diagnosis of autism, so that is another way in which I have changed. Just think of all those TV programmes I could have watched instead of sitting here typing away! I've found such a huge great support network through blogging though, and for that I'm very grateful.
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Did you have a happy Mother's Day?

Just because..... I had a lovely Mother's Day; the photos say I did. 

OK, so maybe it was up and down, and maybe I felt a bit sorry for myself at times, but I'm glad I'll have these happy reminders of the day. There were definitely highlights. Cycling in the rain, painting the girls' hands and feet, having a lie-in.

I LOVE photos!!




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Friday, 8 March 2013

Sasha-isms part 3. Unusual use of language from our ASD girl.

Sasha, our younger daughter, is 5 but will be 6 in June. She comes out with phrases that amaze and tickle me every day, and I only wish I'd remembered to write them all down as we went along, as I'd have a book-full by now!!

'When we die, we change to a whole new world, don't we mummy?'
'Er... yes, I guess so darling.' (she's only 5, no need to go into too much detail yet....)
'Well I want to go to Pocoyo World then.'


'Wow Mum, it sure is busy in here tonight!'

Said on Halloween, shopping in Marks and Spencers at 5pm when it was probably the quietest I've ever seen it....

Her 3 favourite expressions: 'Busy, busy, busy. You know me mum, always busy, lot to do!'
'How COULD you?!'
'hey, what's the big idea?!'


'I'm going to trick on you!' 
(think this means play a joke on you/make you laugh!)

Me, whispering, 'go and say thank you and Merry Christmas to her then'.....
Sasha bounds back into the room and shouts 'Gracias! Feliz Navidad!' (and no, the person she was thanking doesn't speak Spanish!) 


Sasha has greeted all her classmates with 'Hola, Freddie*' (*or name of whoever she sees) for several months now. One of the children today saw her coming (literally) and shouted out 'Hola Sasha', so Sasha paused for a millisecond, then retorted with 'Ni Hao, Suzy'!! ('Hi' in Mandarin, in case you were wondering...)


At bedtime, Sasha said 'Mummy, I don't want to do swimming lessons any more. All my swimming energy has gonned away'.


'I don't like the Numbertaker' (current obsession at this particular time = Numberjacks on YouTube). 'He's just too Numbertaker-y'.


Just randomly, out of the blue, whilst sitting in the back of the car, Sasha exclaimed 'oh dearie me!'. About nothing in particular, apparently. It's not a phrase I ever use... where does she get them from?! It did make us all giggle though...

Tonight, as I tried to explain to Sasha how it wasn't good to try and be in charge all the time when she's on a playdate, because that would make the other person sad, and if she makes everyone sad, she'll have no friends, she looked forlorn and said 'that makes my tears already come mummy'. Which of course made my eyes prick. This is going to be the biggest issue for us going forward, trying to teach her social interaction in a positive, non-controlling way....
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Wednesday, 6 March 2013

Justin Bieber. Yes or No?

OK, it's late, and maybe my brain isn't working quite as it should.

Justin Bieber. Good or Evil?

Being one of the biggest boy band fans ever (TT rule!), I would have thought he'd be right up my street. OK, OK, I know he's not a band... well maybe a one-man-band?! Maybe I'll just have to come clean and admit it's the baby faces I can't resist (anyone shouting Cougar rather loudly?!).

I think way back when 'The Bieber' first appeared I was temporarily interested, but shortly after I discovered he was only 16 and definitely not legal. His music was OK (don't judge me), but not really enough to hold my interest. Tonight, whilst doing the ironing, I've just seen him on my recorded Let's Dance For Comic Relief (how fab is that programme?!), and you can see the pop star oozing out of him. Cocky and confident, sickly smooth... but hand up, I did actually love the song he sang, and I believe that boy has talent. It's nothing to do with the way he looks, he's not really my cup of tea (honest).

I saved the recording to show my 7 (nearly 8) year old, but then I wondered if that was a good idea. Is he the kind of role model that I should be letting my daughter swoon over? In the news lately I heard that he had come on stage late for one of his concerts, at 1030pm - extremely late in my view for a concert where there would be lots of young fans. No real reason given for the lateness that I heard of, though to be fair I could have just missed hearing it. If One Direction did that (listen up, boys) for the concert I will be attending with Tamsin, then I would be furious. I'm not sure they could take the media outcry to be honest.

So how has good old Justin got away with it? Does he have so many fans he just doesn't care? Or is it that everyone loves a bad boy really?

I'm just not sure I should be deliberately helping my little girl to join the followers of such a mass entity (although obviously I'm powerless to stop her catching him on some kiddy channel some time soon). Somehow I'm not quite sure that Ed Sheeran would have the same pull though. Over to you, love him or hate him (Justin I mean - surely everyone loves Ed...?!)?
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Sunday, 3 March 2013

Sponsored Silence for Comic Relief and #TeamHonk

I'm so proud of our big girl, Tamsin. She has decided, completely of her own accord, that she would like to raise some money for Comic Relief.

 Her idea was a Sponsored Silence - for a whole hour! Believe me, that's a long time for a 7 year old girl who likes to chatter.

She is in the middle of it right now, so I've signed her up to join #TeamHonk's page (they're good you know, they've climbed Snowdon this weekend!). She doesn't know about this yet, and I'm not going to tell her mid way through else she might break the silence and squeal with excitement. 

She approached close family members directly to ask for some sponsorship, but I do know that she would be SO SO SO SO chuffed if even one person who is not close family could sponsor her online..... just £1 would do, and every single penny counts towards Comic Relief.

So please, if you can find it in your hearts to make one big small girl very happy this bright Sunday morning, we (and Comic Relief) would be grateful from the bottom of our hearts.
Here's the link you'd need to click if you can spare £1... https://my.rednoseday.com/sponsor/Tamsin


and not wanting to detract from this, so I'm putting it v v v v small, Mr Curtis is running the London Marathon on behalf of the NAS (National Autistic Society) this year.  His donation page is : www.virginmoneygiving.com/ChristopherCurtis.

Today he's about to set off to go and run theSilverstone Half Marathon... Good Luck Mr C!
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Friday, 1 March 2013

Changes to Children and Families Bill for #SEN children

I'm very excited. Thanks to Tots100, in a couple of weeks time I will be having a cup of tea with
Edward Timpson, the Minister with responsibility for special educational needs (SEN) and disabilities. I'd have gone without the offer of a cuppa to be honest (and it's not often I say that). 

We will be 'chatting' about the changes being proposed in the Children and Families Bill, which is currently going through parliament. More specifically, we will be focusing on what those changes mean to children with Special Needs, and giving our opinions on how the law needs to be changed. 

If you have a spare few minutes (ha!), the Bill can be found here and SEN is in part 3: Children and Families Bill.

I will have to admit that despite considering myself to have been fairly well educated, I struggle with any kind of political and legal jargon. I guess they have to produce it, but I sure don't have the time to try and fathom out what it all means. Luckily, there are some other great websites around which do a great job of simplifying the information.

IPSEA is a national charity providing free legally based advice to families who have children with special educational needs. All their advice is given by trained volunteers, and they do a great job. You can read their thoughts on the SEN changes here: IPSEA Key messages
They are also writing a blog with answers to frequently asked questions on the proposed changes - see http://ipsea.blogspot.co.uk/.

According to the NAS (National Autistic Society), the changes, which are being introduced as part of the Children and Families Bill, include:
  • replacement of Statements with new Education, Health and Care Plans (EHCP)
  • new duties on local authorities and NHS bodies to work together to commission services
  • extension of the system to cover young people in further education up to the age of 25.
Our family has recently become a 'Pathfinder' family. This means that our council is one of a handful around the country who are currently testing out these new methods and feeding back on what has worked. Today I'm about to go to our annual Statement Review for Sasha, and this will be followed by our first meeting about the single EHCP plan (Education, Health and Care). 

My first impressions are that the new paperwork is much more user friendly, but we need to be able to ensure that actions on it are followed through, and for that we need the words in this Bill to be SMART - Specific, Measurable, Achievable, Realistic and Time scaled. 

Currently the words in the Bill mean that only the education part of the plan will be enforced. There is no legal requirement for Health and Social Care to be involved so there are limits to what can be achieved. It is noticeable that Social care have offered us nothing and Health has given us minimal support - assuming SALT falls under health, but I am never quite sure. In any case, I'm not actually sure I could testify that SALT have given us much support anyhow.

There is also a glaring omission with regards to fixing timescales - timing is so key for parents who need to know that 'something' will happen by a certain date, rather than being left in limbo and going round in circles trying to gain help for their child.  

Our SEN diagnosis is autism, but there are many other SEN children with a different diagnosis who are also affected by this bill. I wonder how many of them have heard of Early Support - a great government initiative which only seems to have been taken on board and used properly in certain counties (certainly not ours). In their words 'Early Support is the central Government mechanism for achieving better coordinated, family focused services for disabled children, young people and their families across England.'  

To me it does seem as if there is a fair amount of thinking going on (albeit sometimes directed by and for professionals, rather than for the families involved), but very little of it is joined up and actually going anywhere - does that describe Government as a whole though?!


I'll admit to liking the sound of Edward Timpson's original words on this matter:
The Bill will…give children and young people with special educational needs and their families better co-ordinated support, and more choice and control over how that support is provided.
Every measure in the Bill is driven by one simple objective: our determination to improve the outcomes for all children and families in our society, whatever their start in life and whoever they may be.
His heart may be in the right place.... his words are easy to say, but are they easy to put into practise? Can he back them up by adding the right words into this Bill? I'll be asking him that, and how he is really gong to make a difference, and I'd love to take along any of my readers' comments. I think it's incredibly important that these politicians listen to real life issues, and not just work on where they perceive the problems to be. So please leave me any questions you have for Mr Timpson and I'll do my very best to get you an answer.

 
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