Monday, 22 April 2013

Colour Splasherz Carry Case product review

Over Easter we were lucky enough to receive a new product for both girls to try out - the Colour Splasherz Carry Case.

I'm not quite sure you can tell instantly from the name what it is, but the packaging certainly made it look exciting and both girls were keen to have a go. 

The case consists of several beads and 2 main pendant 'stones' which fit neatly into a holder/setting. This setting can then be threaded onto cord (which has a safety catch) to make a necklace. The beads can either be added to this or put onto separate cord to make a bracelet.

The exciting part of the product is the fact that you can make different designs on the beads and pendant stones by dipping them in water. The case itself opens up into two halves and has a fancy tray insert which can be used for placing the beads on. You then fill one side with very warm but not boiling)water and the other with freezing cold (note the ice cubes, they definitely helped), and lower the beads in. Or else just use your fingers to dip, which is mostly what my girls ended up doing!

The girls had great fun with this and spent a good long time dipping and changing the colours for different effects. They were then happy to show off their finished products:

This retails for around £12.99 and I'd say this is a great gift for the 5-8 age range. One thing to be aware of though, is that the patterns will disappear overnight and the beads return to their original colour... fortunately our youngest hasn't realised that yet! And as our older girl said, it means you can start having the fun all over again!

We were sent the above toy for the purpose of this review, but have not received payment. All the views expressed here are our own.

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Sunday, 14 April 2013

Reasons To Be Cheerful, April, Week 15 #R2BC

There's a lovely Blog Hop that has been going for some time, started by the lovely Mich at Mummy From The Heart entitled 'Reasons To Be Cheerful'. I've always wanted to take part, as I can always think of at least one thing to be cheerful about, but I never quite manage to find the time to type. However, I persuaded myself that there's no time like the present...

My reasons for being cheerful this particular week are all to do with the fact that we've enjoyed 2 weeks of lovely Easter holidays. I did have to go to work myself, which is not ideal, but I can be cheerful about that as it's only a bit of part-time work, and it's good work!

My lovely parents were supposed to be visiting us for Easter, but at the last minute my mum got a call to say they were ready to do an operation on her chronic sinusitis, and she's been waiting 6 months for that. So whilst I was of course sad that my parents couldn't come after all, I was on the other hand happy that my mum would hopefully get much better soon.

The unexpected lack of childcare (alongside the pleasant company) whilst still having work to go to did mean some pretty impromptu juggling of events, but I can be cheerful about that as a) I have lovely friends who helped out, and b) Sasha went to stay and play at someone's house that she's never stayed in before, and she behaved impeccably! Smiley We also had a couple of playdates with new friends at our house, and it was lovely for me to be able to catch up with these new but as-if-I've-always-known-them friends. 
Right in the middle of the holidays I was able to enjoy a special treat with our eldest girl... a trip to the O2 to see One Direction *squeals!!!*. Obviously this was all for her benefit and nothing to do with my long standing love of boy bands, ahem.... thought I'd throw in a couple of action pics for you to smile over:

After that excitement, as arranged, the girls went up to stay with their paternal grandparents for a few days, so that I could go to work in the second week of the holidays. Whilst I didn't really want them to go as I knew I'd miss them so much, it did mean that I was able to get on with some very important paperwork in the peace at home after work (along with all the usual laundry, ironing etc). So I can be cheerful that the pile isn't quite as big as it was before... Smiley

On their return, I had my biggest reason to be cheerful of late - I'd also managed to use the peace and quiet to get some internet shopping done (only for the girls, of course!) and so when Sasha had settled back in, I was able to present her with several pairs of shoes in different styles and sizes. I managed to catch her at a good time, and she tried them all on quite happily in one go with no fuss, and we managed to agree on a pair of pumps, a pair of sandals and a pair of party shoes! So summer is all sorted as far as Sasha and feet go, which is a weight off my mind.

Finally, today has been 'glorious'
(my mum's favourite word) down South and we've actually been able to make it to the park WITHOUT coats! It's a miracle! Definitely another reason to be cheerful. Come on, join in if you can!

This is a blog hop:
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Saturday, 13 April 2013

Undiagnosed Children's Awareness Day.

Today is Undiagnosed Children's Awareness Day. These children are sometimes referred to as SWANs - Syndrome Without A Name. There's a brilliant website which I'd love you all to take a look at -

Did you know that it is actually quite common to have an undiagnosed genetic condition? Had you ever even realised that there might be families out there struggling, because no-one has ever been able to give them a name for the condition/illness/characteristics their child has?

I have to admit, I had no idea. Just as I knew nothing about autism four years ago, as little as two years ago I had never given a thought to what other parents without a diagnosis might be going through.

Back when Sasha was first diagnosed at the age of 2 and a half, we didn't have to spend a long time in limbo, wondering what it was that made her speech not develop. It probably took just six months from us referring her for speech to receiving her diagnosis of autism, and in those months life just carried on as 'normal'. We weren't tearing our hair out, we were just learning how to build a happy family life at home. The diagnosis came as a surprise, but in a strange way also a relief, as it gave a reason for some of the difficulties I was facing which I hadn't had with our first-born girl.

In the year or so after diagnosis I'd heard from many other autism parents who were still struggling to get a diagnosis - they knew what their child was like, but the professionals were not keen on putting pen to paper and actually admitting it. I went back and thanked our paediatrician from the bottom of my heart for her quick and professional judgement. Conversely, during that time I also heard from parents who had seen professionals about their child, but who were not at all keen on the idea of giving their child a 'label' - after all, what would a 'label' do except single that child out as being different from all the others?

The 'label' helped me enormously. It helped me understand different parts of Sasha's character that I hadn't even really been seeing, it helped me know how to help Sasha and how to teach others to help her, and most importantly, in a very short space of time it helped me come to terms with how and who Sasha 'is'. It has also enabled me to tick boxes and fill in forms easily, because autism is of course a recognised condition. We all crave and expect answers constantly in our lives so we know what to do to keep moving forward - no-one likes to be blindfolded (literally and metaphorically) and told to get on with it, right?

Imagine then, if you could see there was something different about your child, if others could see that too, but nobody could actually tell you what 'that' was, or what they could do about it, because they just didn't know? Those professionals are meant to know everything, right?

Well, sadly they don't. Some families they just can't help in that way.

Through blogging I have met and made an inspirational new friend. She has three children, and her youngest boy is what she describes as 'medically complex'. She has to carry on with the 'not knowing' day after day. She is truly amazing and her writing is out of this world - I challenge you to go over and read her blog and not to leave with tears pricking your eyes. Not in pity, but in pure emotion at her honesty and her take on the world, after what she has had to experience, and what she has to go through every day. Try The-difference-between-you-and-me or Undiagnosed-childrens-awareness-day-2013 or The-unfixable. Or maybe all of them. 

And what do I want from this? I'd just like more people to think more about others and how they can help. Those 'others' may be in the street next to yours and you don't even realise it. It may not be physical help they need, it may just be emotional support. Or maybe, just a little more understanding from the world around them.
read more "Undiagnosed Children's Awareness Day."

Wednesday, 3 April 2013

Statement of Educational Needs and Free Schools.

Recently we have received Sasha's amended Statement of Special Education Needs following our recent statement review. I think I've mentioned before that the statement is very wordy, and states things like 'small group work' for Sasha, but she doesn't actually get additional support in the form of a full time permanent extra assistant in school. We have been extremely lucky with our Infant school, and they have been very flexible, helpful, and understanding as far as Sasha is concerned. In some ways though, her path has been slightly eased by the fact that all the children around her are also so young still and therefore show a wide range in ability and behaviour. The move to Juniors will involve several new challenges for all of us, but we also feel confident that the school will work with us and do their best to help Sasha.

We have always felt the Statement was at best our passport to choice of secondary school for Sasha (by law you are allowed to state the school which you feel will best suit your SEN child's needs, although you may end up going to court/tribunal with the council if they don't agree). However it has now become clear to me that the statement doesn't actually help a right lot as far as schooling goes, if there is indeed no suitable school to send her to. I have no desire to be sending Sasha out of this county to a school, especially when her sister will be local - I think most parents would much rather their child was in a school nearby. That's probably why a lot of children with autism end up being home schooled - but that's a whole other topic.

With our statement we received the schools information. This includes a sheet showing the special schools - a choice between learning difficulties, moderate learning difficulties, emotional and behavioural difficulties, hearing impairment and physical impairment; 25 in the whole county. There's also a single sheet showing mainstream 'units' or 'bases'. Seven of these are primary only (none in our town, funnily enough), 3 are for hearing impaired, one for physical impairment, 12 for speech and language, 4 for specific learning difficulty and one for visual impairment. Then we also get a 16 page list (double-sided) of all mainstream schools in the county. This irks me somewhat, as I see it as a massive waste of tree - there's not actually any chance at all that I would send my SEN girl to an average mainstream in say, Bishops Stortford, or Borehamwood, so why do I need that door wedge?!

None of these schools are likely to suit Sasha - she does not have a learning disability, she is not physically, hearing or visually impaired, her speech and language has pretty much caught up to her peers and is in any case not her main issue, and she is most definitely not your average, mainstream child. 

It's probably the sheer increase in numbers at mainstream secondary schools which would cause Sasha the greatest problem - the noise, the confusion, the managing different timetables and different teachers every day, the lack of individual help. These are all issues which the average child may also struggle with, but the majority of them can cope with it, even if they don't enjoy it. For Sasha everything is an extreme. We could consider trying to place her with a full time Teaching assistant, but in reality this seems to single special needs children out even more as being 'different', leading to more bullying and less integration.

The alternative could be to consider paying privately for education, as class sizes there are guaranteed to be smaller. However I'm not confident this would be an option for Sasha - sadly her special needs are seen as just that - needs. She would be considered a drain on resources (which she would need if she were to hit the high academic targets that these schools are held to), and most likely not welcomed by those parents who are paying the high price for their own child's education.

So for me, it appears that a specialist school, where people will actually understand and care for Sasha, is the only option. There is no such school in this county currently. Therefore, I am 100% behind the opening of a new free school in this area and will do everything I can to help regardless of whether it turns out to be the best option for Sasha or not. Other parents deserve it too - and there are plenty out there who do not have the energy to fight. I'll do it because it's right for parents to have the option to provide the best and most suitable education for their children.

read more "Statement of Educational Needs and Free Schools."

Tuesday, 2 April 2013

World Autism Awareness Day. What is Sasha really like?

Hello! Did you realise it's April 2nd today? It's World Autism Awareness Day (which handily falls within World Autism Awareness Month).

I'm fairly sure that all my nearest and dearest know by now what Autism is, but I just thought I'd do a little refresher for anyone who has come across my blog recently.

According to the NAS (National Autistic Society),

 'Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. People with autism have difficulties with everyday social interaction'.'Autism is a complex developmental disability involving a biological or organic defect in the functioning of the brain'.

Historically there have been sub-categories within the Autism diagnosis - Classic Autism, then High-functioning Autism or Aspergers. Again according to the NAS:

High-functioning autism and Asperger syndrome are both part of the 'autism spectrum'. The main difference between the two is thought to be in language development: people with Asperger syndrome, typically, will not have had delayed language development when younger. 

We believe Sasha falls under a third sub-category, called PDA (Pathological Demand Avoidance*) and we have been referred to GOSH (Great Ormond Street Hospital) for a visit this summer (on my birthday!) for a more detailed analysis of her condition. The NAS description of this is:

People with pathological demand avoidance syndrome (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.

There is a move about to happen, to take away the subcategories and just give a diagnosis of Autism. I agree with this on the basis that to increase understanding, we should focus on one word/name rather than confuse people - and as the popular saying goes, 'If you've met one person with autism, you've met one person with autism'.

However, on the other hand we believe there are some slightly different strategies for PDA which are more effective for Sasha - for more detail please see my footnote.

Sasha was diagnosed with autism, or ASD (Autistic Spectrum Disorder) as it is also known, when she was just 2 and a half years old. She will be six in June and I'd like to share with you what autism means with regards to how Sasha is now.

Sasha's speech was delayed, and that was the reason we were first referred to a paediatrician. We didn't have many worries about her behaviour back then - we knew she was strong-willed, but so are many toddlers, right? 

Now she has pretty much caught up to her peers in terms of speech. She can have a conversation with you, although she is prone to going off at a tangent or steering the conversation round to what she actually wants to talk about. Her sounds are not totally clear - she struggles with 'S' and 'f' for example, and her grammar can be a little unusual - most past tenses have extra 'd's on the end, like gonded instead of gone, sitted instead of sat and 'I maded it happen'. Gone are the days though, when she used to call Tamsin 'Gah-woo' (probably due to her difficulty with 'T' at that time!), and when she constantly mixed up 'he' and 'she'. Recently she has taken to saying inappropriate things a little too loudly at inopportune moments - like 'look, there's a little mummy!' within earshot of a fully grown woman who just happens to be slightly shorter than most, or my personal favourite, when she was in the pool changing rooms with daddy, and standing next to a boy her own age with no clothes on, 'look, there's something popping out of his bottom!' with her finger pointed directly at and only centimetres away from said object. For more of Sasha's funny expressions, see my previous posts Sasha-isms, Sasha-isms part deux and Sasha-isms Part 3.

Sasha's strong will is probably what sets her apart most from other children. It's an extreme of behaviour that can be really difficult to cope with. Often her reactions are driven by sensory issues - too much noise, too many people, physically uncomfortable places or clothes will all cause her to withdraw herself or meltdown. Fortunately the meltdowns happen much less frequently these days, and we believe that Sasha is becoming more aware of issues which will cause her problems. A lot of the time though, it is either her fear of a situation or the lack of control which drives the extreme reactions. Her inability to be like all the other children and just join in with group requests is definitely the autism in practice.

She is sociable, but doesn't understand the rules of being social. In the playground she is happy if she is leading the game and others are following her rules, but she is not happy to be directed or led by others - 'give and take' is still an ongoing lesson for her. Likewise, in the classroom, she is happy to stand up at the front of class and give the other children orders, like 'put your coats on children, and remember to do the zips up', but she is not happy to be one of the pack and listen to others giving orders. Yes, there may be other children in the class who are not happy with that either, but the difference is that Sasha will noticeably refuse, or withdraw, or become agitated. She likes routine - but only if it is of her choosing, and on a good day she is fine even with unexpected change, if it is explained to her. She has been described as having 'subtle control' in the classroom.

Sasha is our bundle of joy - quite a big one these days! For breakfast she has a mini pepperami, followed by Weetabix then 'mummy toast' (toast with just butter as opposed to marmite like daddy has!), then a banana (which has to be green, not yellow). Then she'll follow that up with her lunch of 'four cheese sandwiches, 10 crisps and chocolate please' at about 10am when at home - I've no idea how she manages to hold out for school dinner. For the rest of the day she will declare she's hungry at regular intervals but rarely eats any hot food other than chips. She is definitely a creature of habit as far as food goes and it's a long struggle to get her to try anything new - although, in a 'typical child' kind of way, she will eat brown bread or all the crusts on her sandwiches if at someone else's house or a party. Still, her food inflexibility at home doesn't seem to be doing her any harm!

She is happy nearly all of the time, she is very loving, she is always polite and helpful, she is curious, she is not materialistic, she has lots of energy, she loves using different languages, she is caring and she is often extremely funny. We never have a dull moment with her around and we love her to pieces. Autism is not a bad thing, it's just different. Different, not less.

*A further excerpt from the NAS website describing the characteristics of PDA:

People with PDA tend to have much better social communication and interaction skills than other people on the spectrum, and are consequently able to use this ability to their advantage. They still have real difficulties in these areas though, usually because they need to control the interaction. They often have highly developed social mimicry and role play, sometimes becoming different characters or personas.

The main features of PDA are:

  • obsessively resisting ordinary demands
  • appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
  • excessive mood swings, often switching suddenly
  • comfortable (sometimes to an extreme extent) in role play and pretending
  • language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
  • obsessive behaviour, often focused on people rather than things.
Often in cases of PDA there will have been a passive early history, but this is not always the case. It is believed that there may be neurological involvement in some cases, with a higher than usual incidence of clumsiness and other soft neurological signs.
The main features of PDA are described in more detail below. Other children on the autism spectrum can display one or more of these features but when many occur together it is helpful to use the diagnosis of PDA because things that help people with autism or Asperger syndrome do not always help those with PDA.
People with PDA can be controlling and dominating, especially when they feel anxious and are not in charge. They can however be enigmatic and charming when they feel secure and in control. Many parents describe their PDA child as a 'Jekyll and Hyde'. It is important to recognise that these children have a hidden disability and often appear 'normal' to others. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges.
People with PDA are likely to need a lot of support into their adult life. Limited evidence so far suggests that the earlier the diagnosis and the better support that they have, the more able and independent they are likely to become.

read more "World Autism Awareness Day. What is Sasha really like?"

Monday, 1 April 2013

Schooling choices for SEN children. What are they?

So on Monday I attended the 'Inspiration for Implementation' conference organised by the local Parent Carers group. 

Although cleverly named, this was in fact a big discussion around schooling options for children with Special Educational Needs (Autism and Downs were the focus but no-one was excluded). It was a resounding success; 90 parents and professionals attended and I know of several others who would have liked to have been there. The County Council needs to be aware..... Schooling for children with special educational needs is a top priority in Hertfordshire.

I've heard talk of mainstream schools with autism bases before now, and specialist schools for autism, but I assumed they must just be a well kept secret in our county until you are classed as 'needing to know'. It would seem however, that our county does not actually have any of these. Bedfordshire has several, apparently. 

There are supposedly autism units within a couple of the special schools, but these special schools are all MLD or SLD schools - for moderate or severe learning disabilities. I'd wondered why I just 'had a feeling' that Sasha isn't going to fit in anywhere... it could just be that there is nowhere for her to fit into. Sasha is in some ways on the same academic level as her peers and so is not classed as having a learning disability; however her autism can definitely be a barrier to her learning, in all aspects of education - socially as well as academically.

So, back to the conference. First up to talk was Mark Lever, the Chief Executive of the National Autistic Society (NAS - we love acronyms in the world of Special Needs you know). It was a thought-provoking and very interesting speech.

He gave us a few statistics, and there's a handful I'd like to share with you:
  • there are 88,000 children with ASD (Autism Spectrum Disorder) in education
  • in a recent NUT survey, 44% of teachers said they do not feel comfortable teaching children with ASD
  • 43% of children in autism specific education are sent out of their county for schooling
  • 32% of parents of children with ASD are called to take their child home early
He then went on to talk about the Children and Families Bill - that very same issue I spoke about with Mr Timpson at Westminster (for a fuller picture on that, read my previous blog post here). He explained how the NAS has three main areas of concern - timing (as in, the Bill needs to pin down timing so that parents are not left in the never ending cycle of nothing happening), the inclusion, with accountability, of health and social care (the new EHC plan is still very education driven), and the fact that the Local Offer (which local councils are being made to produce), is simply turning into a 'wish list' rather than a statement of what they will actually provide. All is woolly in the current draft of the new Bill, and needs stronger force to ensure issues are dealt with appropriately.

Mark (we're on first name tweets) also answered the question 'What is a Free School?':

'Free Schools are all-ability state-funded schools set up in response to what local people say they want and need in order to improve education for children in their community.'

The NAS has its first free school due to open in Reading (Thames Valley Free School) this September, followed by a second in Lambeth (Vanguard Free School) the following year, and a couple more in talks. They are schools specifically welcoming children with high functioning autism, although from what I understand, the Reading school will also have an autism base for children with more complex needs, with the aim of integrating them when possible. 

Mark was very honest about how difficult it is to set up a free school though. Money is the first obvious big issue. There's a reason why special schools are more expensive than mainstream; there are less pupils to bring in the money, coupled with a higher staff to child ratio. Site and staff are the next challenges. He explained that skilled resource is a necessity, with the Head Teacher needing to be an entrepreneur and good at building relationships - a new free school is in fact a new business, not just an education establishment. He also stated that evidence of a longer term need is required in order to sustain a new school. 

A question was then asked which I'm not sure anybody knows the answer to - 'does the LA (Local Authority) really know all about the young people with autism in their area and what their needs are?'. More research need to be done, and quickly - but surely someone should have this data already? I do sometimes wonder what is actually achieved by all the people working on these issues; it often seems as if there are more of 'them' than 'us' but I doubt that's true.

We are told that placing a child with special needs in a specialist school out of county costs an excessive amount of money. For the council, it would seem that money in the short term (as in saving and cost-cutting), and not the children, is the priority. I can of course understand that there is a limited budget, but a) is it being spent effectively and b) it seems ridiculously short-sighted to not have plans in place to avoid the continuing need for these expensive out of county placements for SEN children in the future.

Jane Vaughan, Director of Education for the NAS, led a very interesting afternoon session about Free Schools. We were given more detail on how the NAS new free schools have been set up, and were then set the task of discussing where we felt gaps in educational provision in Hertfordshire were. Some of the gaps identified included lack of autism specialist resource bases in mainstream schools, post 16/further education provision for those with autism, and specialist autism nursery/pre-school provision*. By far and away the biggest gap of provision agreed upon though, was for those children with ASD or additional needs, who would not be able to sustain or even begin a mainstream placement, but for who special school was not an option due to the fact they have no learning disability.

A separate discussion group held that afternoon was looking into the possibility of developing more provision for special needs within mainstream schools. I do see this as an urgent need and high priority also; however, as mentioned before, I know this is an area other parents have been campaigning in for many years now and nothing much ever seems to come to fruition. If anyone has any concrete ideas on how to push this forward, I'm all ears of course!

It was an extremely interesting conference, and the best use of my time I've felt in ages. It has given me hope that these issues may be addressed in enough time for a positive outcome for Sasha, and I'm definitely looking forward to the follow-up.

*I discovered this week that there are in fact only 2 specialist autism pre-schools in the whole of England. The one which Sasha attended in Stevenage, TRACKS, is one of those. It was quite frankly a lifeline for us in the early days, and a place which helped develop Sasha immensely. They always need funding! Early Intervention is a term bandied around a lot by the Government, but there seems to be no follow-through on that promise.

read more "Schooling choices for SEN children. What are they?"