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Thursday, 28 April 2016

Emotional Rollercoaster of Autism diagnosis

I'm looking back again, to the early days of this blog, in the months after our girl was first diagnosed with autism spectrum disorder, aged 2 and a half. In fact, this post was written just over a year after we saw a paediatrician for the first time, and a lot had happened in that time even though back then it felt like everything was moving so slowly.

Steph's Two Girls
Sasha, aged 3 and a half, a year after diagnosis. Dressing up and face paints, two things she wouldn't generally enjoy these days.
We'd had to move Sasha out of the local private nursery (as they'd struggled to cope with her) and into the mainstream nursery attached to the primary school our eldest daughter was already at. It turned out to be a great move for Sasha, but I remember the worries over changing routine back at that stage. It could have gone either way. Luckily for us, the staff were accepting and understanding and offered all the support they could. It wasn't easy, for anybody, but it just about worked. As she moved into reception, we chose to send her to an autism specific pre-school called Tracks for a couple of sessions a week. Staff experienced in autism worked with her there and although it was a 40 mile round trip twice a day for me, it was one of the best things I've ever done for Sasha. 

In this post, I talk about the 'painful' statementing process - a Statement of Special Educational Needs was what a child needed in order to ensure the correct support. It's now called an EHCP (Education, Health and Care Plan), and I'll go into that in more detail in a future post. We had been turned down when first applying for one of these for Sasha - on the grounds of some information or other missing. Which presumably was a stalling process, as they had plenty of information, and could have just requested the extra anyway. So we only had to wait weeks, rather than the usual six months, to get Sasha's case looked at again and they then agreed to assess. Lots of meetings, lots of paperwork; nothing much has changed in the past six years on that front.

I also mention SALT - Speech and Language Therapy - and I've been left with the overriding feeling that this is an NHS service that could have done so much more for us, bearing in mind the difficulties with speech that Sasha had (and still has). Not sure what played the biggest part, lack of understanding or lack of resources, but either way it's not turned out all that well.

Finally, I consider the mix of emotions which goes on when you stop to think about the future if you have a child with autism. Hopefully we are all working together to make this world a better place, but of course there are still many hurdles to jump.

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School nursery is still going fantastically well for Sasha (am touching our wooden desk now!) and I really couldn't be happier about that. It was definitely the right move at the right time, even if it was one we hadn't originally planned. She is obviously happy and confident in her surroundings, and with the staff members - she comes out after lunch club most days with a huge grin on her face. She's then fairly happy and active at home, and hardly ever sleeps during the day now. Sleep used to be her opt-out method when she got particularly upset, so we're quite glad that doesn't happen so often. In fact she doesn't reach the same distressed state anywhere near as often these days.

So that's all great news, but that's not to say she's changed. She still has autism, her speech is still unclear (and as yet has still not been given any actual NHS SALT sessions, but won't go on about that right now!) and I think that starting the new nursery has really highlighted to me how far behind her peers she is with regard to learning some things, and with her social and emotional skills. When she was at the old nursery I guess I made a fairly conscious effort not to mix or get involved with many of the mums of her peers, as I already had a great circle of friends who are mums of Tamsin's peers, and Sasha was quite difficult to deal with, never allowing me time to chat anyway. I also knew that it was unlikely anyone from Sasha's nursery would go to her school, and that unless you meet a very good friend, your lives are then taken in different directions anyway and you have less chance to meet. However now I stand with all the other mums at the new nursery every day and watch all the other children coming out, and it is sometimes difficult to see the children chatter away or answer questions easily when I know Sasha just can't do that. Of course the sadness can't possible last as soon as I see Sasha's big grin - and of course it's not the other children making me sad, it's just the awareness of how big the gap is.

The statement process is inching along and we have submitted our final information/thoughts on what Sasha's needs will be for when she starts reception. Just now the mail has arrived, and in it a copy of the NHS SALT (Speech and Language Therapy) report which they were bound to provide for the LEA. They are suggesting Sasha should receive 10 sessions of 90 minutes duration across the year. This is to include observation, assessment, attending meetings, writing reports etc; the list goes on, 13 points in total of which 2 involve direct therapy with Sasha. Not really impressed to say the least - how bad does she have to be to actually get direct help?! The whole statement process is a tricky one though (not least getting to the point where they agree to assess in the first place). Finally getting to a stage where we all agree on what help Sasha needs in specific areas and what this translates to in terms of staff hours etc could take some time and a few headaches.

They do say you shouldn't really think about the future, as no-one knows what is going to happen. That is true for everyone, but lately it has been difficult not to think ahead, and I already know there will be much tougher times to come for us as a family. For now, Sasha is blissfully unaware of the differences, but how will we explain it all to her when she does begin to realise? It would be so sad if she lost her gorgeous sunny disposition and the independent character she has now. School can be a difficult place for any child, but particularly so for those who are different I imagine. Last week I was almost in tears during school assembly, when a young boy with some difficulties (slightly more obvious than Sasha's) went out to the front to be awarded a certificate along with other children his age. It was seeing all the heads of the children turn to watch him walk back to his place which brought a lump to my throat. Children don't generally hold back from saying what they feel, although hopefully at this young age it's not laced with malice. One of Sasha's extra chatty peers told me recently that Sasha ignores everyone, and to be fair he's mostly right, although at times she can be the most friendly and sociable child I know. It's just not always at the right times. It was tempting to say to the boy 'she can't help it' or 'she's not doing it on purpose', but of course it's not so easy to explain in a few words. She's just different. It's a shame that our society doesn't really welcome that as a whole about lots of various issues, not just autism. Awareness and understanding have definitely improved over the years though, and we just have to keep up that flow of information to be able to help everybody.


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For more information on autism please do visit www.autism.org.uk and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit www.pdasociety.org.uk.


For Day 1 read: A is for April and Autism Awareness

For Day 2 read: AAA Day Two

For Day 3 readAAA Day Three

For Day 4 readAAA Day Four

For Day 5 of our story please read: AAA Day Five





read more "Emotional Rollercoaster of Autism diagnosis"

Tuesday, 26 April 2016

Young Driver experience - Review

Have you heard about the Young Driver experience?

Our 10 year old girl has driven a car. A real car. She's only 10! What an amazing opportunity, and a day she won't forget in a hurry.




Apparently, two out of every ten newly qualified drivers will crash within six months of passing their test. Sadly I can corroborate this, as I was part of those statistics, back in 1989 when I first began driving my Mini to school. Luckily for me, it wasn't a 'serious' crash (although the fact it almost took more money to repair my car than it had to buy it months earlier certainly didn't cheer my parents up I'm sure...)

Experience counts for such a lot on the roads - there's a reason why insurance for young drivers is so high. Second guessing what other road users are about to do takes up a lot of thinking time. That's why I totally support the idea of introducing children to cars in a safe environment as soon as they are able, and Young Drivers does just that.

Children from the age of 10 up to 17 are able to have driving lessons on specially designed courses across the UK, in real, dual-controlled cars. Instructors are of course fully qualified and CRB checked, and the youngsters begin to learn the same skills as they would at the age of 17.

Tamsin was eager to set off; while we worried about whether she'd be able to reach the pedals, she was more concerned about the colour of the car... nah, just kidding. She wasn't at all anxious, she was just excited, and pleased to be doing something that no-one else in her class has done yet (at the age of 10, it's all about the firsts. Even the braces on her teeth were considered an achievement in that respect!).


We were amazed as she seemed to start smoothly and take the first bend onto the driving course with ease. Surely she couldn't be doing that herself? There was of course some expert tuition in the car, but she confirmed afterwards that she had been in total control of both speed and gears. You can see in this video clip that they were travelling at a fair speed for a first lesson, and in amongst other young drivers too:


Research shows that children in their early teens absorb safety messages more than the know-it-all driving age teenagers. It also suggests that encouraging children to learn over a longer period of time halves the likelihood of them having an accident shortly after they pass their test. So what are you waiting for, go book that lesson now! Sasha can't wait.... which might not be as crazy as it sounds, as Young Driver does also cater for disabled drivers, including those who are unlikely to drive alone on 'real' roads.

The scheme is sponsored by Admiral, SKODA and Goodyear and operates at over 40 venues in the UK (we visited Milton Keynes). You can book 30 or 60 minute lessons - a 30 minute lesson is just £34.95 currently, or how about organising a party for your child to really get in the 'cool parent' list (she says, proving I am anything but....). £109.95 will get you a party for six young drivers.

The only trouble is, they are likely to want to go back. But I reckon one or two a year while they're young is well worth it. 

For more information please see the website www.youngdriver.eu



* we were asked to review this experience for no charge but all opinions are honest and our own.

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Monday, 25 April 2016

Some basic facts about Autism

Going back to the early days of my blog again, and considering what was going through my mind at that time shortly after the autism diagnosis. This post shows some of the early facts that I came across when researching autism, and most of them stand true today (six years on).


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These 'top facts' about autism were sent to me by another mum as a good starting point to try and spread understanding.

Parents of children with autism quickly discover the top autism facts. But what about in-laws, teachers, friends, cousins etc? Few people outside the immediate family really want to read pages and pages of in depth information. Here I have tried to present some basics for a quick read. These are not all my own words but words I have picked from many different places but I believe they are words that help raise awareness. Please feel free to add to it, send it on to as many people as possible, change it etc. Thank you!!

What do these people have in common?

Thomas Edison, Albert Einstein, Michael Jackson, Woody Allen, Mozart, Bethoven, Gary Numan, Dan Akroyd, George Orwell, Bill Gates, Michael Palin, Alfred Hitchcock, Isaac Newton, Jane Austin, Hans Christian Anderson, Charles Darwin, Thomas Jefferson and Michelangelo di Lodovico.

They are all believed to be or have been (as some are dead) on the Autistic Spectrum.

Autism Is a 'Spectrum' Disorder

People with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal and autistic as well as locked in their own world, non-verbal and autistic. The most significant shared symptom is difficulty with social communication (eye contact, conversation, taking another's perspective, etc.).

Asperger Syndrome is a High Functioning Form of Autism

Asperger Syndrome (AS) is considered to be a part of the autism spectrum. The only significant difference between AS and High Functioning Autism is that people with AS usually develop speech right on time while people with autism usually have speech delays. People with AS are generally very bright and verbal, but have significant social deficits (which is why AS has earned the nickname "Geek Syndrome").

People With Autism Are Different from One Another

If you've seen Rainman or a TV show about autism, you may think you know what autism "looks like." In fact, when you've met one person with autism you've met ONE person with autism. Some people with autism are chatty; others are silent. Many have sensory issues, gastrointestinal problems, sleep difficulties and other medical problems. Others may have social-communication delays - and that's it.

There Are Dozens of Treatments for Autism - But No 'Cure'
There Are Many Theories on the Cause of Autism, But No Consensus.
At present, most researchers think autism is caused by a combination of genetic and environmental factors - and it's quite possible that different people's symptoms have different causes.

People Don't Grow Out of Autism

Autism is a lifelong diagnosis. For some people, often (but not always) those who receive intensive early intervention, symptoms may decrease radically. People with autism can also learn coping skills to help them manage their difficulties and even build on their unique strengths. But people with autism will be autistic throughout their lives.

Families Coping with Autism Need Help and Support

Even "high functioning" autism is challenging for parents. "Low functioning" autism can be overwhelming to the entire family. Families may be under a great deal of stress, and they need all the non-judgemental help they can get from friends, extended family, and service providers. Respite care (someone else taking care of the person with autism while other family members take a break) can be a marriage and/or family-saver!

There Are Many Unfounded Myths About Autism

The media is full of stories about autism, and many of those stories are less than accurate. For example, you may have heard that people with autism are cold and unfeeling, or that people with autism never marry or hold productive jobs. Since every person with autism is different, however, such "always" and "never" statements simply don't hold water. To understand a person with autism, it's a good idea to spend some time getting to know him or her - personally!  

Autistic People Have Many Strengths and Abilities

It may seem that autism is a wholly negative diagnosis. But almost everyone on the autism spectrum has a great to deal to offer the world. People with autism are among the most forthright, non-judgemental, passionate people you'll ever meet. They are also ideal candidates for many types of careers.

Autism has nothing whatsoever to do with the way parents bring up their children

Children and adults on the autistic spectrum are funny, quirky, frustrating and unique. With 1 in 110 children now being diagnosed there is an excellent chance we will all be touched personally by autism in our lifetimes. Hopefully with raised awareness of this issue we will have more understanding of people with autism as well as the effect it has on a family. I would like to think that when people witness a child having a meltdown in public they will be compassionate rather than judgemental.

Sasha is still very young and has a lot of developing to do of course like any child of her age, so we have no idea what her characteristics are going to be. At the moment we can say she is loving and lovable, doesn’t really seem to have an issue with affection or eye contact for example, but does struggle to focus on activities or take direction from others (i.e. she likes to do just what she wants to do – like many toddlers!). She has delayed speech and limited understanding of some concepts, such as time, but is intelligent – she could count to 10 in both English and Spanish at a very young age, and knows when she is asking for chocolate when she shouldn’t be! That’s just a snapshot of course :)

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For more information on autism please do visit www.autism.org.uk and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit www.pdasociety.org.uk.


For Day 1 read: A is for April and Autism Awareness

For Day 2 read: AAA Day Two

For Day 3 readAAA Day Three

For Day 4 readAAA Day Four

For Day 5 of our story please read: AAA Day Five




read more "Some basic facts about Autism"

Wednesday, 20 April 2016

Siblings at Center Parcs ~ April 2016

So this is where our siblings were on the 15th of the month of April this year - at our favourite place to holiday, Center Parcs!


It's only ever a short Friday afternoon to Sunday weekend away for us, but we've been to three different Center Parcs for six years running now because we always know we are going to have a fab experience. This trip we went to Elveden Forest, and my parents joined us there for their first ever visit to any Center Parcs. I think they were impressed; it was a brilliant weekend for us, as always, and lovely to share it with family.

One of the main reasons we choose to return regularly is because Center Parcs is a familiar place for Sasha, and she knows what to expect when we get there - oh, and because she loves swimming. The Subtropical Paradise is where we head every day when we're away, and we spend three or four hours at a time in the amazing water facilities.

Over the years, Sasha has progressed from not wanting to put her face in the water to her first ever full trip down the Rapids during this most recent trip. Lots of small steps have definitely led to an amazing achievement, and a girl who is very confident in the water. Sasha even had a go on one of the small slides there, so who knows, she may eventually decide to try the bigger ones in the coming years. The Rapids were definitely her favourite this time though and I reckon we must have been down them more than 50 times over the course of the weekend!

Elveden Forest
Sasha coming down the rapids and Daddy and Tamsin on the fast white slide at Elveden Forest
Our eldest loves the water too of course, and it's a case of the more slides the merrier for her. Elveden Forest has our favourite waterslide - the Tropical Cyclone. Sitting in a raft, you set off sedately down a huge chute until you swirl into a vortex and then drop down a 45 degree slide. I'm very proud to say that my parents very bravely gave this ride a whirl with us, and they also tumbled their way down the rapids more than once. I think they deserve a medal too!

There is so much to do when you're at Center Parcs - we chose roller skating this time, but have done everything from tree trekking to climbing to sailing before now. There are great restaurants, and plenty of outdoor play areas, which we really enjoyed:

Elveden Forest


Plus there's the gorgeous spa of course.... and I can't not mention the wildlife. We were visited by squirrels, ducks, rabbits and even a very tame deer who wasn't even scared off when we opened the door.

Elveden Forest

Even the rain on the first day couldn't dampen our spirits. We love Center Parcs (and no, I'm not being paid to say that!).

Elveden Forest

Elveden Forest

Elveden Forest




“Our


The Me and Mine Project
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Monday, 18 April 2016

Early post-diagnosis thoughts on PDD-NOS and PDA

Picture is of Sasha at an amusement arcade; fingers in ears to block out the noise. On a good day, this can work for short periods; on a bad day we'd have struggles persuading her out of the house in the first place.
Today's recap of the early days after our girl's diagnosis of autism looks at some more examples of behaviour of our 2 year old and how she differed from our older girl. It was a difficult time, as a lot of the behaviours seemed similar to those that might occur with any toddler - at that age, meltdowns and tantrums look fairly similar and it can be difficult for outsiders to distinguish them. I could always tell the difference though - my way of describing it was that Sasha's emotions were just more 'extreme'.

Interestingly, it was at this point when I obviously first started thinking that Sasha didn't quite fit the 'typical' autism diagnosis (if there is such a thing). It was only a month after the first suggestion of autism, that I already felt the label wasn't giving us all the answers. In my post at that time, I talk about PDD-NOS (Pervasive Development Disorder Not Otherwise Specified). This is also sometimes called Atypical Autism, and it is occasionally given as a diagnosis when the child's behaviour pattern fits most but not all of the criteria for typical autism. Pervasive Development Disorder is actually the official term for Autism Spectrum Disorder; the latter is what is now more commonly used.

It made sense that Sasha wasn't diagnosed with Asperger's Syndrome, as a distinguishing factor for that was early, advanced speech (Sasha's speech was delayed). However she also didn't show many classic autistic traits - no flapping or repetitive play for example, and she was quite sociable. At a later date, which I'm sure I'll get to with my recaps, we came across the term PDA - Pathological Demand Avoidance. The characteristics for PDA described Sasha almost perfectly and it was our 'lightbulb moment' - something experienced by several parents whose children don't seem to be classified very well by the terms Asperger's Syndrome (AS) or High-Functioning Autism (HFA). More of that in future posts of course, but for now I'm going to use the words of the National Autistic Society to try and explain the difference between AS and HFA, as they cover it much better than I can:

What's the difference between high-functioning autism and Asperger syndrome?

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.
Gillberg and Ehlers (1998) identify four main areas where controversy over the difference in diagnosis still exists.

LEVEL OF COGNITIVE FUNCTIONING

The view that Asperger syndrome is autism without any additional learning disability is helpful from the diagnostic point of view as it is fairly easy to make a distinction in these circumstances. However, Asperger himself said that there might be unusual circumstances where a person could present the symptoms of Asperger syndrome with additional learning disability. It is widely recognised that high-functioning autism cannot occur in someone with an IQ below 65-70.

MOTOR SKILLS

In recent years the view that Asperger syndrome can only occur when there are additional difficulties with motor skills has become more prominent. Certainly Asperger himself was well aware of the prevalence of motor skill problems in the group of people he tried to describe. It seems likely that most children with Asperger syndrome experience poor co-ordination and difficulties with fine motor control. However, many children with higher functioning autism will also have difficulties in these areas.

LANGUAGE DEVELOPMENT

This is the area that probably causes the greatest controversy. Both ICD-10 and DSM-IV1 state that for a diagnosis of Asperger syndrome, spoken language development must be normal. Children with high-functioning autism may have had significant language delay. However, Asperger's original descriptions of the condition stated that speech and language peculiarities are a key feature of Asperger syndrome. Often diagnoses of Asperger syndrome are made when a child is quite old and they or their parents may have difficulty remembering the details of their language development.

AGE OF ONSET

A diagnosis of high-functioning autism and one of Asperger syndrome can be made in the same individual at different stages of development. Occasionally a child has been diagnosed with high-functioning autism in early childhood and this diagnosis has been changed to Asperger syndrome when they started school. Some diagnosticians are clearly of the view that Asperger syndrome cannot be diagnosed before a child starts school. However this is largely because areas such as social skills deficits may not become apparent until a child spends a lot of time in social settings.

To summarise
  • Both people with high-functioning autism and Asperger syndrome are affected by the 'triad of impairments' common to all people with autism.
  • Both groups are likely to be of average or above average intelligence.
  • The debate as to whether we need two diagnostic terms is ongoing.
  • However, there may be features such as age of onset and motor skill deficits which differentiate the two conditions.

Hoping that gives a small insight; below are my posts from that time where I start to wonder how we can best describe our girl.

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I am wondering, given the past week of good behaviour, if people think I make things up about Sasha - in fact I sometimes wonder if I'm imagining things myself! Makes me feel a bit alone to be honest - no-one else really sees her for as much time and as constantly as I do, and her behaviour is obviously different towards different people, especially if she thinks I'm not around. What am I doing wrong, or is it just that all children know how to play their mums?! However the books I've read on the subject do suggest that improvements come in spurts rather than consistently, and this is probably how it is for now.

Sasha has quite a few good phrases now, even if the language isn't all that clear - including 'there he/she/it is' and '1-2-3-wake-up' if we're pretending to sleep. 'home sweet home' is my favourite phrase of hers though, I love to hear that. I did laugh a lot when I went to collect her from nursery on Friday and they said she had resolutely refused any tea, pushing it away (something she has eaten happily several times before!) but instead had sat there singing 'twinkle,twinkle,chocolate bar' (instead of little star, obviously). She does that at home also, generally at the top of her voice, and that's another thing that always makes me smile. When home last weekend she happily sang 'happy birthday' to her nana, and even quietly went and got the bag of presents to give to her of her own accord! The fact she wanted to open them may have had something to do with it though....

I need to go and do some more reading now, in preparation for our next meeting with the paediatrician (lunchtime on Thurs). I have in my mind something about PDD and how that might be Sasha - here I'm copying directly from the NAS website...

A dad once observed that his son didn't have autism but PDD-NOS: Pervasive Developmental Disorder Not Otherwise Specified. "I just wish he had something I could pronounce," he added wryly, "something someone has heard of. " Such exasperation is understandable given the somewhat cumbersome and commonly misunderstood acronym, PDD-NOS, which describes a specific pervasive developmental disorder.
A child may be diagnosed with PDD-NOS if he or she shows some behavioural features of autistic disorder but does not meet the full criteria. All of the listed PDD are part of a spectrum of overlapping conditions. To illustrate this, a child may begin with a diagnosis of PDD-NOS, develop more autistic features with age, and be re-diagnosed with autism or another pervasive development disorder; conversely, a child with autism may improve and be re-diagnosed with PDD-NOS.

As Sasha does seem to recognise and show emotion, and can interact very well with people she doesn't know all that well (when it suits her), I'm wondering if this is how she may be diagnosed. My worry at this stage is still that Sasha is not 'bad' enough to get help which she may well need desperately when starting school, and I'll do everything I can to make sure that start will be as smooth for her as it was for Tamsin.

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So, a long time again since the last post - not unusual in the world of blogging from busy mums I'm guessing.
There has been so much I've wanted to write about, but never really feel I have the time to do it - in fact, I never really feel I have the time to do anything at the moment, I feel constantly pressured about everything there is to think about and do!

Had another lovely weekend away, with old friends, and all went fairly well, apart from the occasion when Sasha decided she wanted to leave the park early, before everyone else was ready to. I can imagine other people thinking 'why don't you just make her wait', or 'try and distract her' but sadly it's just not that easy - once she's made her mind up about something, that's it and there's no amount of persuasion can work. In this case she had just walked off and kept going, barely looking round, and if I hadn't followed her she would have just kept on going anyhow. There would have been no point picking her up and coming back, as that would have led to a tantrum - not particularly what I wanted on Mother's Day! Restraining her is one thing guaranteed to distress her. It may be true that that is similar for a lot of toddlers, but the difference is that with most others you can talk them round, explain it and offer distractions etc, but with Sasha once the mood is upon her there is no way she would listen or be reasoned with, or learn from the experience.

Having said that, I have of course plenty of experience of Sasha's moods being 'up and down' - she can seem inconsolable one minute and then be her usual happy, funny self the next. The main problem with that is the inconsistency and the not knowing what exactly is going to upset her. I can see Tamsin struggling with that too, although she is learning (we all are) some of the things that will set Ssaha off - being shouted at for example, or being told no!

I had a meeting with her nursery this week to update her IEP (think that stands for Individual Education Plan - something done for Special Needs children but maybe also other children with learning 'challenges') and it did dampen my mood slightly (was on a high after the lovely sunny, warm weather). They are very good, and helpful, and pro-active, but they said her behaviour has become more 'noticeable' now she's in nursery for 2 whole days, and following a more structured day. They did kind of floor me by asking for my help/advice on how to deal with Sasha when it came to calming her down from the 'flashpoints' (as they called them, quite a good description I thought). It was then I realised just how much time I spend trying to avoid getting to those flashpoints in the first place. It can be a bit like walking on eggshells, but I think I'm so used to it now that it doesn't stress me out all the time, only on her particularly bad days where nothing is good enough for her and she doesn't really know what she wants herself, despite me offering everything. I make sure, for example, that she is constantly topped up with food and water, as being hungry or thirsty is something I've noticed will definitely affect her mood. But it's so much more than that, and very difficult to explain. I don't spoil her as such (well no more than I do Tamsin!), and I don't let her get away with any deliberately naughty behaviour, but then she is rarely deliberately naughty, and doesn't do anything with malice. The 'Naughty Step' idea just wouldn't work for Sasha because at this stage, however much I explained it, she just wouldn't 'get' the concept. But I can't help feeling that most other parents will just look at me and say I'm not being strict enough. I know I'm not a strict mum, but I hope people see that Tamsin is growing up to be a polite, well-behaved little girl anyway; I think it's somehow ingrained and to do with genetics in a similar way to autism!

Spoke to another mum of a child with Aspergers recently, and she did say how you have to develop a thick skin - I really do have to accept that people will be disapproving and leave them to it. Of course we have lots of great support and good friends which is lovely. I read a great saying in one of the books I've been lent - 'those who mind don't matter and those who matter don't mind'. Think that will have to become my mantra!

So off now to make a million phone calls (so it seems) to chase - for the actual written confirmation of the diagnosis (not yet landed on our doorstep), speech therapy information (when and how much), information on various courses and groups and see what I really need to be doing to help Sasha - and us as a family.

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For more information on autism please do visit www.autism.org.uk and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit www.pdasociety.org.uk.


For Day 1 read: A is for April and Autism Awareness

For Day 2 read: AAA Day Two

For Day 3 readAAA Day Three

For Day 4 readAAA Day Four

For Day 5 of our story please read: AAA Day Five





read more "Early post-diagnosis thoughts on PDD-NOS and PDA"

Friday, 15 April 2016

Has Autism or Is Autistic?

Regular readers will now that our youngest girl was diagnosed with autism over six years ago, and that's when I first started my blog. As this month is autism awareness month, I'm revisiting the early days of my blog to look at the emotions we went through shortly after diagnosis. These posts were written just four weeks after we first saw a paediatrician; in the first we have just received the official diagnosis and in the second I am trying to give a basic idea of what autism is. 

Here's a picture of Sasha in June 2011, on her 4th birthday. A rare one where she is looking at the camera.
Can you tell from this photo that she is autistic?!
Having read my old posts over, I have to say that I definitely don't agree with some of these thoughts now. For example, today I would prefer to say that Sasha 'is autistic' rather than Sasha 'has autism'.

My views on that have changed due to the fact that I've processed a lot of information over those six years, including several blogs written by autistic people. And in the main, they prefer to be called autistic, as that is who they are. Of course they are also individuals, Sarah, James, Chloe, whoever, but they acknowledge the difference that they have. They (and I) don't feel like it should be seen as a disease; we generally say people 'have measles' or 'have cancer' but we don't say people 'have blindness'. It's just a difference.

Of course once Sasha is old enough to decide for herself how she would prefer to be described (I'm guessing that'll be as 'just Sasha') then we will of course follow that path. For now though, it makes more sense to me to say she 'is autistic'. That's not to say that I'm offended by 'has autism' or even that I don't use that myself on occasion - it might all depend on who I'm talking to and why I'm telling them. So please, don't be afraid to say either - I'd rather people said what feels comfortable to them than avoid the issue altogether. I also talked about 'mild' and 'severe' autism - of course knowing what I do now, I'd say that links into the high versus low-functioning debate. It's very difficult to categorise the effects on one particular person.

There's also much more recent research, and new links on the NAS website, to clarify that it is now thought that the ratio of boys to girls with autism may be quite different, due to the fact that girls are much better at 'masking' (meaning they generally learn how to copy others better so their autism is not so 'noticeable'). That's a whole other post!

 Anyway, onto the posts, as they were originally written:

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So today we went back to see the paediatrician, and after asking Mr C and I what we thought, she confirmed she would be giving Sasha a diagnosis of ASD - autism spectrum disorder. Although it's a spectrum, they don't actually state where on the spectrum a child is at such a young age, as there would still be so much to develop at this age anyhow. It seemed as though she had already decided on that after our last meeting, but was not wanting to rush in and hurt our feelings, which is fair of her. As she must have experience, there's no need for us to doubt her thoughts.

So although it's not a shock, and it doesn't change anything on a day-to-day basis, it is of course a bit sad for the poor wee soul. The next step is that her report gets sent off to the Autism Advisory service, who should then contact me in 4-6 weeks to offer some support - although what exactly that will be we're not so sure of!

From all I've read so far, this is really just the start of a fairly hard slog for me to get the right kind of help and support for Sasha. I've already heard about parents' evening and groups and even day courses to go on - all of which take up extra time of course. Then there's the minefield of so called 'intervention programmes', of which ABA seems to be a fairly new but recognised one - but also fairly expensive. And of course the speech therapy is the most important in my mind, I'm really hoping that can start as soon as possible. I almost cried this evening when she was sitting on my knee at bedtime and she hopefully said the same phrase to me 3 times, but I couldn't understand at all what she was wanting (nothing part of the usual routine, so maybe it was a roundabout request for sweeties!) and so that made her upset.

So it looks like time and money is what we need now to help our little darling. One thing I think we could benefit from is some parenting course to help us discover how best to treat Tamsin through all of this - I don't want her to start resenting Sasha in any way, but it's a bit much to expect her to understand everything going on at her age.

So good job I was sitting about twiddling my thumbs before all this news ;). Will just have to cram twice as much into our everyday lives now - anyone know of a good, cheap nanny??!!

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Just a quick one today, as it struck me that I haven't really said much about ASD/autism yet. We've read a couple of really good books and can't exactly summarise them in a paragraph here, but for those who know nothing (like me just 3 months ago) I can pass on some info as I understand it. 

First, we would generally say Sasha is diagnosed with ASD or has autism, rather than she is autistic. That's because saying she is autistic kind of implies that's all she is, whereas in reality she has autism, but that isn't the whole of her, she has many other skills and qualities. 

ASD is Autistic Spectrum Disorder - so called because the behaviours can range from mild to very severe - and I'm sure most people would understand it to be about the severe cases such as those that have been televised. Characteristics such as repetitive behaviour, lack of social awareness and the like can all be shown to varying degrees. 

The National Autistic Society (NAS) explains it as follows: 

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. 

In the 'olden' days, people assumed that autism was caused by parenting - so a lack of discipline for example would lead to bad behaviour. Nowadays thankfully a lot more research has been done, and this idea has been totally thrown out. Autism is complicated and down to the genetic make-up of a person, so you are in fact born with it. As per the NAS,

'Autism is a complex developmental disability involving a biological or organic defect in the functioning of the brain'. 

The statistics now say 1 in 100 children will have autism, and it is amazing how many friends of friends who have children with this diagnosis have now been mentioned to me. I'm sure I will make some great new friends who share some of the same daily challenges as me - but then everyone is different, in the same way that some of my old mum friends will not have had the same food battles with their children as me but may have had worse child sleep problems. 

There is no proven reason for the increase in diagnosed cases, although it follows that some of this is down to increased understanding of ASD as a condition. Two facts from the NAS, with links to their web page: 

Over half a million people have autism in the UKBoys are four times more likely to develop autism than girls. 

There are no cures for autism, it is not something that goes away as children grow up. 

There are various methods in practice, and developing all the time, to improve behaviour, but what works for one child may not for another. 

Again according to the NAS: 

'Autism is a lifelong developmental disability with no cure. Children with autism grow up to be adults with autism.' 

And there ends today's lesson. Just a quick intro, I'm sure I'll pass on more information in the future!

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For more information on autism please do visit www.autism.org.uk and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit www.pdasociety.org.uk.


For Day 1 read: A is for April and Autism Awareness

For Day 2 read: AAA Day Two

For Day 3 readAAA Day Three

For Day 4 readAAA Day Four

For Day 5 of our story please read: AAA Day Five


read more "Has Autism or Is Autistic?"

Wednesday, 13 April 2016

Denial and the V-Word

Continuing now with recaps of my blog posts in the first couple of months after the diagnosis of autism for our girl. The writing in blue below was only five weeks after we had seen the paediatrician, and it describes a trip away to visit family which went better than expected. 


Sasha having fun during our family trip away in February 2010, 5  weeks after diagnosis. She was never really a fan of looking at the camera and smiling...
At this point in our 'journey' (apologies to all those who detest that word), it seems as though I was still questioning everything, and trying to find reasons for Sasha not to be classed as autistic. Much like the mum in The A Word this week. 

If you'd have asked me last month, six years on from diagnosis, I don't think I'd have recalled that time when I almost doubted the diagnosis. For most people though, there is generally a denial stage before moving on to acceptance. 

I think if parents are being honest with themselves, most of them wouldn't say that they were happy that their child is autistic. Not in a way that autism should be seen as anything wrong with a child (it's not), but in the way that autism certainly doesn't make their life in this world an easy one. Not sure I'm explaining that very well.... at this stage in our lives, we can look back and say that we are happy that Sasha has a diagnosis, we obviously don't mind in any way that she is autistic, we wouldn't change her for the world now we have her, but for her sake would it have been easier to not be autistic? Or maybe the point is that it would have been easier for us?

That's one long discussion right there... and this old post then also touches on the speech and language issue, and right at the end the MMR jab is mentioned.

I've never gone into the thorny topic of vaccinations in detail on my blog, and I certainly don't want to start now. For many in the autism community though, even the word 'vaccination' is a bad thing. It stems from a time around 25 years ago when a British doctor raised concerns about the MMR vaccine. His report was subsequently discredited and he was struck off. There are probably three schools of thought among parents - those who strongly believe that autism is caused by vaccinations, those who absolutely don't, and those who don't feel they have enough information to say one way or another.

All I can tell you is that both my girls had the MMR jabs, at around the same age. Our eldest girl is not autistic. If you don't vaccinate your child, you are putting them, and other children, at risk of death. 

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Well it's been a few days since I last posted and a busy half term - still lots to think about and little time to write. I'm amazed at how well this week has gone actually, Sasha has coped with all the changes from routine admirably - in fact I'd possibly go as far as to say she's thrived on it! Something I didn't really expect - and which has of course got me thinking in circles again, as her behaviour has really been exceptionally good for a toddler, rather than just 'normal'.

Half term started with a trip up to my parents for my mum's birthday weekend. Sasha had fallen asleep for the last 45 minutes of the 3 and a half hour trip there, but woke up just before we arrived. As we stopped in the car park she seemed fine, and was eager to get out of the car. She did her usual trick of pretending to act shy and snuggling into me as we saw Nana and Bampi again, but as soon as we entered their flat she was running around as if she owned the place - she clearly remembered it, and her bed in particular. This time we decided to put Tamsin to sleep in the same room as Sasha (previously Tamsin slept in the room with us due to different sleep patterns of the girls), so poor old Tamsin probably felt a bit demoted, but as we explained to her, we thought it would be nice for Sasha if she had company in the room when she woke up. So that led to Tamsin waking during the night at 3am and calling for me, and both making their way together to our room at Sasha's early wake-up time of 6am - yawn. My heart was really warmed that morning though as they both climbed into bed with me, and as I dozed they played a little game of holding hands and pushing which caused lovely giggles from both of them :)

The first evening we were there I went a bit mad and got over-stressed about tea time being late, surprising everyone I think including myself. Especially hard for anyone else to understand as the girls were being well behaved and fairly patient at the time. The trouble is I know only too well how quickly Sasha's need for food appears (she is very impatient, can't imagine who she takes after ;) ) and as I was trying to explain to husband later, it's really only me who ever sees that. It's difficult to explain to others though, not least because if anyone else is cooking it doesn't happen to them, as the girls will of course have me then elsewhere to entertain them, and so nothing is quite so urgent. I'm not the world's keenest cook anyhow, so it makes me majorly stressed to be trying to cook whilst being grabbed and pulled by the hand to the fridge to find a quick fix which then means tea won't get eaten. Tamsin by now is old enough to understand and wait, but I'm sure at Sasha's age she was probably just as impatient - although food was never such a great pull for her anyhow.

The next day we went out to a Wacky Warehouse pub as a birthday celebration (lucky mum) and this time Sasha did show her impatience - from the time we got in there at 430pm she was desperate to eat and wouldn't let me be until we'd chased the waiter and had the food in front of her. Not that she really ate anything other than garlic bread and chips, but it certainly pacified her and the difference in behaviour was instantly noticeable to me - but maybe the issue is that I'm too close to the action as it were, and others just don't see it? The fact my older brother's children are all wonderful eaters probably didn't help (although obviously not their fault!!!) - my niece asked for a second bowl of spaghetti bolognese while we were there, something I could only dream of hearing from mine!!!

The second night sleep went much better and on our 3rd day we sadly ended up having a split day - Tamsin and Dad went with my brother and co to the indoor play place, while my parents and I waited for Sasha to nap, then when we turned up at the play place the others were all just leaving. However Sasha took it all in her stride and had a fantastic time alone on the soft play - once I'd help her find a path up to the big bumpy slide she was happy to carry on repeating that on her own or with me, although I laughed lots when she dragged Bampi and Nana up with her! In some ways she's much more adventurous than Tamsin was at her age - it's only recently really that Tamsin has had the oomph to do things like that on her own. Generally Sasha also seems less bothered by other children and I think she would give as good as she gets in the face of any trouble, as opposed to Tamsin who will run away crying!

So a lovely time, although hearing Sasha's younger cousin start to talk and say please and thank you at the age of 22 months does of course sadly just make me more aware of how far behind Sasha is. Saying that, I do think I have heard Sasha say 'thanks' once or twice recently, although of course it's not really recognisable as that. But in her own way I think she's trying. Just wish we could get on and get her some help now - I'm still in shock that the speech therapy team have said it's 6 months from assessment before therapy starts.

More to write re the past few days but must go sleep now and hopefully update again over the weekend. Am taking the girls for the swine flu jab tomorrow, not looking forward  to that at all! Have to be honest that I still want to read up about the MMR jab and its alleged link to autism, although I know our GP laughed it off as ridiculous....


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For more information on autism please do visit www.autism.org.uk and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit www.pdasociety.org.uk.


For Day 1 read: A is for April and Autism Awareness

For Day 2 read: AAA Day Two

For Day 3 readAAA Day Three

For Day 4 readAAA Day Four

For Day 5 of our story please read: AAA Day Five


read more "Denial and the V-Word"

Monday, 11 April 2016

Autism, The A Word and the future.

More recaps today, looking back at the surge of emotions after the autism diagnosis of our youngest girl at the age of two and a half. 

Those emotions meant I was desperate to DO something - anything I could, to help her. It's in this way that I've related to the Mum in the BBC programme The A Word - I didn't go quite as far as stalking a therapist, and I didn't pull Sasha out of school to home educate her, but maybe I'm just not quite as dramatic as the TV character...!

Carrying on from that were plenty of thoughts about the future and what would happen. Most parents worry about their children in some way or another, and nobody knows what the future holds, but there seem to be so many more 'what ifs' involved when you have an autistic child. We still don't have all the answers of course, particularly regarding our next big transition to secondary school, but I try not to get too stressed about it these days. I've realised that all I can do is my best and take it as it comes.
www.stephstwogirls.co.uk
This photo was around 10 months after diagnosis. Sasha has always loved snow, and has been very disappointed the last few years with the distinct lack of it! She is often this happy when doing what she loves...
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So I'm still gripped by the need to get on and DO something now - it's just knowing what to do that is the difficult bit! Managed to get hold of someone in SALT (speech and language therapy) who informed me that the usual wait from initial assessment report to actually getting speech therapy started is 6 months! So that would mean nothing happening until June, seems unbelievable. So now do we have to search for a private therapist? I certainly want to get on and try and give her the best chance to communicate - today she repeated a word about 6 times for me but I still sadly had no idea what it was she wanted, although she obviously did, and understandably it upset her that I didn't.

More luck on the hearing test; managed to get another appointment for the end of this month, which is fortunate seeing as their written report came through today, and it was fairly technical - i.e. I couldn't really make head nor tail of it! So will be going back to ask some more questions there.


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What the future holds is a big question, and one which I've been trying not to think about. I've just finished Lorna Wing's very good book, but it did make me sad towards the end as it talks about how life may turn out. There's a chance that Sasha may be dependent on us for a long time to come, which is of course not what anyone really thinks about or hopes for when having children., much as you love them! This made me a little sad when thinking about the future and effect on Tamsin also - instead of the close/best friend sibling that we thought we were in a way 'giving' her, it could be that she's in a very different situation and will always have to be the caring one. It may also mean that she has to be more mature for her age than her peers in the coming years, and I really don't want her magical childhood to slip away from her. However, it is of course true that not all siblings are best friends anyhow, and we never did really know what the future would hold, so there's no point dwelling on it.

Probably feeling slightly down today also because we received a copy of the report written by nursery in order for them to put in a claim for funding for extra help for Sasha. The nursery has been very good with Sasha, and I know she's very happy there. Although they may not have had a lot of experience with autism as it is a relatively new nursery, I feel confident that the owners are happy to be involved and even pro-active (something I've already been warned is less likely to happen at school). The report was one which I also completed as Sasha's mother, and it's a tick box checklist of various things that the child can or can't do at certain ages, split down into categories such as fine and gross motor skills, self-help and independence etc. I guess the most disheartening thing was that Sasha seems to come up with a learning age of just 6-12 months when it comes to expressive speech and language skills, and only 12-18 for receptive language, play and early learning and social and emotional development.

I'm already dreading Tamsin's next parents eve, as I feel we will have to talk about Sasha as well as Tamsin. The teachers should be aware of it for Tamsin's sake so they can understand if she makes reference to her sister, but also for Sasha's sake if she is to go to the same school as Tamsin. Forewarned is forearmed as they say, and as I already mentioned, I've heard from various sources that it seems to be a real struggle to get the statement.you need to get extra help in school, so maybe other things will need to be put in place. I'll need to start making enquiries about how they would deal with Sasha starting, as well as looking into specialist schools to understand our options. Seems like school is a long way away but I'm sure it will come around quickly.

Sasha has started creeping into my bed extra early in the morning now, so I must go to bed early!

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For more information on autism please do visit www.autism.org.uk and for more information on the specific type of autism Sasha has (Pathological Demand Avoidance, or PDA), please visit www.pdasociety.org.uk.

For Day 5 of our story please read: AAA Day Five

For Day 4 readAAA Day Four

For Day 3 readAAA Day Three

For Day 2 read: AAA Day Two

For Day 1 read: A is for April and Autism Awareness





read more "Autism, The A Word and the future."

Sunday, 10 April 2016

In Need of New Tiles? Bathroom or Kitchen?

Not sure if anyone has noticed, but we have a little old house to renovate this year and so when I heard that the Tile Mountain were running a competition to win some tiles, I couldn't not enter.

What would you put on a mood board to inspire you? Here's mine, below:

The biggest question for me was: would I like Bathroom or Kitchen tiles? So you can see just how difficult that question really is, let me show you....
Kitchen:

Bathroom:



Sorry if that last pic is one too many...

So anyhow, yes, our 'new' house currently has a separate toilet and bathroom (just like the one I grew up in, awww, happy memories), and yes, it's all pink. Sasha loves it. Luckily, she's not in charge of the decorating.

I think it's fair to say we are going to need a fair few tiles in the new house. Plans are for a bigger kitchen and dining room across the back of the house, and the bathroom is going to end up as one, in a different place. We will also have new ensuites to tile and the downstairs toilet to work on too:


Work starts soon (she says hopefully) so now is the right time to start thinking about what we'd really like. Starting from scratch is very exciting, as I know it will be a huge transformation, but it's also quite daunting.

That's why I was impressed with the opportunity to order free tile samples from Tile Mountain. Their website is super easy to use, and also gives lots of great room design ideas as well as all the individual tiles information and prices. They also have great ideas on their Pinterest board.


I'd love to plump for gorgeous monochrome in the kitchen as on their board, but we'd more likely go for the Limestone Matt Almond Floor and Wall tile for the floor, and add a splash of colour to the walls with the Metro Glass Green wall tiles.



For my ensuite, I would totally love the whole look of this bathroom, which is created with the very popular Metro tiles.



In our main bathroom, I'm hankering after a mosaic effect and would choose the Grey stone and glass mosaic paired with the Velvet grey wall tiles.

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In the downstairs toilet, I'd love the Linear Blue Gloss Wall tile.



I could keep going for ages; there's so much choice on the Tile Mountain website (www.tilemountain.co.uk) and I'd definitely recommend checking it out. You can also find them on Facebook at www.facebook.com/TileMountain.

read more "In Need of New Tiles? Bathroom or Kitchen?"

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