Sunday, 1 May 2016

Shortlisted for a Blogging Award

Wow, I've been shortlisted in the BritMums Brilliance in Blogging Awards and I think I'm still a little bit in shock. Thank you so much to anybody who voted for me, love you all. So sorry I have to ask for a follow-up vote (or even your first vote if you didn't get round to it last time, it's not too late to join in now!)...

BritMums

What made this awards announcement extra special for me, was that I've been placed in the Inspire category. My blog wasn't started with the aim of inspiring anybody; all I hoped for originally was a little more understanding of Sasha, and her condition, in the hope that it would help our little family.


I've been writing this blog for six years now, and in that time it has grown and developed just as we have as a family. My main focus is still to educate the world about Pathological Demand Avoidance (PDA), in order to help other families who live with this every day. People have approached me independently for advice and to say thank you for talking about it, and that means so much. Helping the families also helps the children of course, and that knowledge is what keeps me going. If I can persuade just one person, parent or professional, to 'change their lenses', then I feel I've achieved something (please, click that link, it's so worth it!).

The Inspire category is full of amazing ladies who have obviously all touched other people's lives in some way, and I'm proud to be on that list alongside them. They mostly have tens of thousands of followers on social media though and I really am 'small fry' in comparison. I'm not that hot on design and technology, and I never feel like I have a spare moment in any day, so I have to make the most of what I've got in terms of blogging. I've always felt like I'm writing about a very small, niche subject, which not everyone agrees with, and all I can do is gently persuade others that this is real. This is our life. My gut feeling is that there are so many more families who could be helped if they just knew about PDA.

This has been one of the hardest blog posts I've ever had to write; if it was on a bit of paper I'd have scrunched it up and thrown it away a hundred times. Although I do know that I won't win the category, a part of me would like to have that chance to make a brief acceptance speech; to explain why I write now, to have the chance to get PDA even more on everyone's radar, but most importantly to be able to say Thank You to everyone who has supported me, and Sasha, along the way. I already feel like a winner though; to have even made it onto the shortlist is a huge achievement for me. So thank you all for reading and voting.

Ten blogs have been chosen in the Inspire category for these BiBs awards and they now need to be whittled down to a Top Five before the evening of the Awards.
It would mean so very much to me to get into that Top Five, so please, if you can spare just a minute, please click on the badge below which will take you a page where you then click on 'vote for shortlisted blogs', then it's just your name to enter, scroll down to the Inspire heading and click on the dot where it says Steph's Two Girls.


BritMums


Voting closes at midnight on the 18th May; apologies in advance for the times I will have to repeat this message for any busy people who intend to 'do it later' (as so often happens with me!).
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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





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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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