Wednesday, 21 September 2016

MAD Blog Awards 2016



Last Friday was the MAD Blog Awards event for 2016, held at the Royal Garden Hotel in London. MAD stands for Mum and Dad bloggers, not mad crazy. There's a few crazy ones around though, to be fair.

Photo Credit: Tom Arber Photography and Tots 100
The event is a mingling session with entertainment (casino games this year, but I was too busy chatting to play!) followed by a posh sit down dinner, with a celebrity compere for the awards and dancing after.

Photo Credit: Tom Arber Photography and Tots 100
Always a fab opportunity to catch up with 'old' blogger friends (you know who you are) and meet some new ones. Plenty of chance to take photos too. The good quality pics in this post have been 'borrowed' from the wonderful Tom Arber Photography but I couldn't resist including the slightly dodgy ones too... can you spot the (selfie) theme?!


This was my fourth year of attending the MAD Blog Awards; this year I was so surprised and chuffed to have been nominated as a finalist for the first time. The category I was nominated in was the Outstanding Contribution category - the one I saw my amazing friend Hayley from Downs Side Up win last year. Hayley couldn't make the event this year, and there were a a few other missing faces, but it was lovely to chat with all the other bloggers there.
Photo Credit: Tom Arber Photography and Tots 100
There were nine other finalists in my category, and each one of them there for a variety of reasons. Brilliant writers, bubbly personalities, social media experts, helpful, passionate individuals; all nominated by others. Here's the list, as I think you should pop over and visit their blogs too:

Although I think the same has happened at the previous events, I honestly wasn't expecting all the finalists in my category to be invited onto the stage for the announcement! So my legs were rather jelly-like, but it was an honour to stand up there with them. The overall winner on the night was Becky from A Beautiful Space (not her only blog, she's managed a few!) who is an all round lovely person, and I'm delighted she won. 

Outstanding Contribution Finalists.
Photo Credit: Tom Arber Photography and Tots 100
We were all given an award for our mantelpiece, and that will always remind me of all the supportive people, family, friends and even strangers who voted for me to be there. I'm not the 'biggest' blogger (in terms of readers/page views) or the best writer - I just write from the heart about how life is. This was proof that you don't have to be the biggest or the best. As the Blog of the Year winner, Brummy Mummy of Two pointed out in her fab speech, sometimes you can get recognition for just being honest and being yourself.

Blogging is more than a hobby for me; it's work, but work which I enjoy. The people I've come across in this community, whether in person or online, are fab. Thanks so much to Sally and all the team at Tots 100 for giving us opportunities along the way and introducing us to others.

Thank you so much everyone. Words seem to be failing me for once but I am so grateful to everyone who reads and shares our blog as it helps to spread understanding of autism and PDA (Pathological Demand Avoidance), which in turn will help smooth Sasha's path through life. There's an added bonus of being able to help others along the way too. Thank you all.

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Thursday, 15 September 2016

Siblings ~ September 2016


Siblings - I've been posting pics of the girls each month for over two years now, and they've definitely changed a lot in that time. We all have, of course, but I think it means much more to look back over the changes in children.

It's always a fun challenge to try and get a photo of the two of them together... the above is September's pose, taken just this afternoon. As usual, I can't stop at just one photo though....



This month I've decided to include a collage of some of our other siblings photos which have happened this year... think the grandparents will appreciate this!



The Me and Mine Project
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Wednesday, 14 September 2016

MAD Blog Awards 2016 ~ Finalist!

Last week I was totally shocked with the news that not only had I been nominated in the Outstanding Contribution category of the MAD Blog Awards (Mums and Dads, not actually crazy or anything..), but I had actually made it onto the Finalists list.

It's taken until now for the news to sink in; I was the blog equivalent of speechless for a while there.

I made a little video of myself to share with you in a more personal way, though I'll send apologies now as I'm not the most natural in front of the camera (let's just say this wasn't the first take...)


Thank you SO much to everybody who voted for me. I don't remember begging for any votes, but there has been a fair bit going on this year so I could just have forgotten... there's no law against begging of course, it's just that I've always felt very awkward the odd time that I have mentioned votes.

Obviously I know my Mum will vote for me in anything at all (much appreciated, Mum), but I am so amazed that enough other people also voted for me to get me into that Finalists list.

There were over 8,000 blogs nominated for awards, and there are many bloggers who write passionately about their cause, all with important messages. That makes it even more special that little old me has made it through to the final (judged) vote.

Despite being lucky enough to attend the Awards dinner for the past three years, this will be the first year I've made it as an actual Finalist. Wow. To see how I made it there in previous years, you could catch up on my older posts: 2013 - Bloggers are Brill and 2014 - MAD Secret thing.

My reason for starting a blog was not selfless; it was to document our lives in the hope that others would understand our daughter better. As time has gone on, I've had messages from other families who have been grateful that I've shared our experience of PDA (Pathological Demand Avoidance). There's something very rewarding about being able to help others. I'm hoping to ressurrect my 'This is Our PDA story' series later this year, if I ever get a spare second!

Blogging has now become one of my jobs, one that I definitely don't want to give up any time soon. There's such a fantastic community of bloggers out there and I've gained so much from being a part of it. Not least the amazing friends who I am looking forward to seeing again at the awards ceremony, this Friday in London. No Dr.Ranj this year sadly, but I'm sure his replacement will be funny and we'll have another fantastic evening.



Thanks so much to Sally and the team at Tots 100 for letting me be a part of this community, and huge thanks again to everyone who has voted for me. Social media timelines *may* be spammed on Friday evening... you have been warned!

Just in case you'd like to follow my social media accounts, you could try the following:

Twitter @stephc007
Facebook stephstwogirls
Instagram stephstwogirls
YouTube stephcurtis



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Tuesday, 13 September 2016

What is a One Page Profile or Passport?

Back when I ran courses for parents under the Early Support banner, one of the most popular areas for discussion was one page profiles, or passports.

Early Support was a government initiative to help all parents of children with additional needs navigate their way through the very complicated maze of SEND (Special Educational Needs and Disabilities).

So often, parents are sent away with very little information following any sort of diagnosis. In our case a leaflet for a local support group was handed over and not much more. It can feel like you suddenly have a blindfold on, with no idea how big the maze is, where the exit might be or what it might look like even if you could see it.


The best source of help and information, as the above poster suggests, is generally other parents. It can be very hit and miss as to who you happen to link up with and what they know though.

That's where Early Support courses came in; they were a way of pulling all that information together. I was no expert, but I soon found out that I knew more than some parents who had already been in the system for years. I was one of the lucky ones in terms of who I met along the way. The poster below was one of my favourite resources used on the course, designed to empower parents to believe they held the vital knowledge and were worth listening to.


Sadly, as with so many government initiatives, funding was pulled and Early Support no longer backed as a necessity for parents entering this maze. Their resources are all still available for free though thankfully, although somewhat tricky to find - to help, here's a link to their 'Our Family, My Life' document.

Some advice I always like to pass on to parents new to this game is the suggestion that they develop a one-page profile for their child with additional needs. The idea is that this short summary is quick and easy to read, and highlights the most important areas of understanding that anyone working or helping with their child might need.

The Early Support template is as follows, and this will be sufficient for some families:



However I was lucky enough to see a few different examples when Sasha was younger, and hers includes a bit more information than that. I also felt it was important to include a photo of her with her sibling on it; there is a knock-on effect of Sasha's disability on her older sister and I wanted to ensure others didn't lose sight of that. It's not just about one child, it's about the whole family.

So below is our most recent version for Sasha. If I'm honest, I did think twice about sharing it here as it is of course, a personal document. However, when I think back to those early days after diagnosis, I remember drowning in leaflets and information, files and paperwork, and if I can help even one other family who have a child similar to ours, who could perhaps get ideas from the phrases we use, then it's worth sharing.



This year I cheated slightly by making it double-sided, to include some more generic PDA strategies. That's the beauty of this profile though; there are no rules. You can design what you want, it can be anything from a simple Word document to a flashy colourful powerpoint slide - it's whatever works for you and your child. The idea that it is one page is purely to make it more accessible to others; as much as we'd like them to read and understand all the finer details of our wonderful children, we do have to accept that time is always at a premium and so short and to the point works well.

Sasha's is updated every year and passed on to the new class teacher, to teaching assistants and any other members of staff who will work with her. The profile can also be handed to leaders at clubs outside of school and anyone else who may benefit from the information. The more we educate others about our child, the more chance there is of them being understood.

For more Early Support resources and other information please do take a look at  councilfordisabledchildren.org.uk and for some different profile templates visit www.sheffkids.co.uk. If you type one page profile into Google and click on images you will see many more ideas too.

Feel free to ask me any questions in the comments, or directly by email if you check out my 'About Us' page. Alternatively, you can find me on Twitter @stephc007, Facebook stephstwogirls or Instagram stephstwogirls.




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Monday, 12 September 2016

House Renovation 2016 - Part 7

Sitting here wondering what number I'll get up to with my house renovation updates by the time we move in... this process has been so long already! Anyway I definitely thought it was time to show all you nosey people a bit more.


This is not much to do with the 'new new' house to be honest, but we have now moved into a new rental house. Lovely house, but it was quite a painful process, especially for Sasha this time around. She seemed quite unsettled for a while, but I guess it could have been much worse. Luckily she has understood why all this is necessary and she still has her eye on the end game - she told us all yesterday that she wants to see the house when it's 90% complete, and move in when it's 99% complete. We're thinking it may need to be sooner than that, to combat the current triple payments or rent, mortgage AND builder..

The short video below shows the girls enjoying the house as it was at the end of August and then again a couple of weeks later, this last weekend.



So much has happened in a short space of time since the builder first started 4 weeks ago. I remember this from our last extension - brickwork always flies up but then usually there's a period where it doesn't look like much is progressing. Think it'll be a while before we get to that stage though, as we already know that the next step at ours in the next couple of weeks will be scaffolding going up. That's to help give the house a whole new roof; I definitely think we'll notice that change!

Here's a photo slideshow of all the changes over the last month.... we've enjoyed watching the progress from afar!




Hope you've enjoyed this update; if you'd like to go back to the beginning, here's my other related posts:









Life With Munchers
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Thursday, 8 September 2016

Autism and relationship stress

There's one topic which is not talked about often enough with regards to autism; stress in, or on, relationships.



 

It seems obvious that with the higher levels of caring involved in families with autistic children, there are of course higher stress levels all round. In any relationship, those closest to you bear the brunt when things are not going so well. Living with Pathological Demand Avoidance is often described as walking on eggshells. There's a whole other style of non-traditional parenting involved which means you have to plan ahead, and for every option, whilst thinking of how to give any demands indirectly - I can confirm it's exhausting. If you add to that a difference of opinion between partners as to how children should be handled, and add outside opinions and involvement from so-called professionals, then you can see very easily how seismic cracks can appear.

And yet, as a group we don't talk about it very much. I think there's a fear that if you start to talk, everything will crumble. There's also no getting away from the fact that the cause of the stress is not about to disappear any time soon.

Sadly I'm no expert on this subject when it comes to great solutions, so I'm hoping you can help. I was asked to share this post from a fellow blogger who feels at a loss of how to improve her situation: 

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I married the kindest person I know, a family man who has always been there when I needed him most. Now I fear I am losing him and I don't know how to stop it. 

Our Son ("Jack"), then aged 5, was diagnosed with autism almost 2 years ago. He is high functioning, lacks social communication skills, struggles with self-regulation, tries to control the world & people around him, is always on the go and has a hefty dose of demand avoidance. He is also obsessed with his Dad ("Adam"). 

Life in the past 2 years has been chaotic, challenging, emotional, educational, isolating and stressful. We have faced the uncertainty of not knowing what to do or who to ask for help, struggled to find professionals who could help us, fought exclusion from school, battled to get an EHCP, been lost when our childminder told us she couldn't cope with Jack, and worked hard to manage/ avoid his increasingly challenging behaviour. 

Jack's obsession with Adam means that there are few waking moments at home when he is not demanding Adam's full attention. This also means that it is usually up to Adam to deal with Jack's meltdowns, as Jack is most responsive to Adam's attempts to help calm him down. 

We have made great progress in understanding how to meet Jack's needs, however any attempts by me to help out when Adam is around is met with a refusal to co-operate and/or lashing out. I have even been asked to enter the house via the back door, so that Jack "knows whether to be excited or not when the front door opens". 

For this reason, much of the responsibility of caring for Jack falls on Adam. This can be challenging, and the pressure of always being on the "front-line" of managing Jack's anxiety and behaviours is starting to weigh down on Adam. 

Last weekend the man I love break down in tears. Jack was in meltdown because his sister had something that he wanted and was screaming at the top of his voice, his sister cowering in a corner as she tried to avoid him, and I was in the middle trying to broker the peace. Adam walked in on us all, and immediately stepped in to help calm Jack. Five minutes later, Jack was screaming that we "were no longer his parents" and Adam was sitting on the floor in tears trying to stop Jack from hitting him.

This is not the first time that this has happened. Over the past few months this is happening with increased frequency, and Adam is retreating into himself as struggles with the pressures of caring for Jack. I wish that I could help him but the reality is that we seldom really talk with each other these days, and I know that he does not feel comfortable with the idea of getting professional help. 

As we approach another weekend I hope that this is the week that things change. I am not sure how much longer Adam can continue to face this pressure without help before he breaks.


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I wouldn't be surprised if many families with children with additional needs and disabilities can relate to this post. I think this blogger would really appreciate any support or advice you can give.....

If anyone else in the world of SEND has something to write that they don't want to be identified for, whether that's difficulties with relationships or the system or anything else, please do feel free to get in touch - email, Twitter, FB, whatever suits. Happy to help where I can.

Steph's Two Girls on Facebook: www.facebook.com/stephstwogirls

Steph's Two Girls on Twitter: twitter.com/stephc007

Steph's Two Girls on Instagram: www.instagram.com/stephstwogirls/

Steph's Two Girls on YouTube: www.youtube.com/c/stephcurtis


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Wednesday, 7 September 2016

Eve Mattress Unboxing (and Review)

We were so happy to recently be asked to put a brand new eve mattress to the test and let you all know what we thought of it. This is what it looks like:


Seems like we missed the memo from the Sleep Council suggesting you should change your mattress every 7 years.... our old mattress had gone well past its Best Before. We'd been sleeping on it since 1997!

For the past few months (I'm surprised it wasn't longer!) I'd been waking up with severe backache, barely able to walk first thing in the morning, and the pain would last a few hours. As a carer, it's true to say I'm generally pretty rubbish at taking care of myself at any point, but I knew this had got to a ridiculous stage.

It was good luck then, that I'd heard of the eve mattresses - amazingly, they are delivered in a box, like this:


I was intrigued - would a foam mattress that comes in a box really be good enough for a lady who is clearly no spring chicken any more?!

It's not just any old foam mattress though; there are apparently 3 foam layers, all surrounded in a plush fabric cover. There are 4 centimetres of contouring memory foam, then 3 centimetres of cooling foam, with a thick supportive layer of base foam underneath. The side of the mattress cover is a sunny yellow, made out of fabric designed to encourage airflow and keep the mattress cooler.

So the 'delivered in a box' thing.... surely a mattress is too big for that?! We thought we'd have a go at one of those Unboxing videos on YouTube to show you we're not fibbing. Not totally convinced the video will do as well as those little chocolate egg ones, but here you go anyway:


Here's how it looked when we first got it out of the box - once the packaging was open it very quickly sprung (pardon the pun) into shape, though it takes a few hours to expand to full thickness. I'll admit that the box was a *little* heavy to get upstairs (and sadly the delivery is to your door only) so you may want to bear in mind that you'll need some extra hands to help when yours arrives.



You'll see in the video (what do you mean, you haven't watched it yet?!) that the packaging is pretty special; not only yellow and sunny, but with wise slogans and sayings printed all over the inside of the box. Here's a couple of my favourites:



The eve mattress has a 10 year guarantee (for issues other than normal wear and tear, obviously!) but what's even more special than that is the fact that this company offers a 100 days home trial. So if, for any reason, you don't love it, they will come and collect it from you for a full refund. I can tell you, hand on heart, that I love our eve mattress. So soft and comfy. We've had it for around three weeks now and I'm not sending it back. It didn't take me long to adjust to it at all, and I would definitely recommend it.

There are also eve Pillows to go with your mattress; whilst we didn't receive one of these to test out, I am now seriously thinking of buying a couple. If they're as comfy as the mattress, we're onto a winner!




Disclosure: we were sent this mattress in exchange for our honest opinions of it on this blog. 
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Sunday, 4 September 2016

Shrek's Adventure (Review)

So Friday was back to school for youngest girl, but our eldest is soon to begin secondary school and her start date isn't until Tuesday. I wondered if this might cause issues with getting youngest to go back in, but we kept everything low key and didn't mention that there were any plans to do anything without her.

Now the day is done, I can tell you that there were plans. Time alone with eldest daughter, who is a fantastic big sister and copes with the PDA challenges very well, is quite rare so I wanted to do something a bit different.

There are many places where Sasha won't, or can't go, and of course many of these are places where Tamsin would love to go. So I planned a special trip into London (even the travel there by train is something that Sasha doesn't ever really want to do) and off we went to visit Shrek's Adventure!


Shrek's Adventure is located on the South Bank, one of my favourite places to be. It's right next door to the Sea Life Aquarium (we reviewed that at the start of summer) and the London Dungeons, and just along from the famous London Eye. I believe there are great value tickets which you can purchase if you want to visit more than one attraction, definitely worth checking that out.


We collected our tickets from the admissions desk, staffed by a jolly crew member with a very long name. We then waited in a queue to get in for about 10 minutes, and after being scanned through were asked to pose in front of a green screen for three different photos (one smiling, one running and one roaring). The reason for this only becomes clear at the end of your trip...

Next stop was a small lift to take us to the departures area (for another photo opportunity) and an introduction to the safety rules by a very theatrical young person who loved using the words 'Shrektacular' and 'Shrekcellent'. Princess Fiona then appeared to give us the background to the story and usher us on to a bus ride. Without giving too much away, the idea was that we were a group of travellers who needed to find Shrek to help us escape. That was because we inadvertently killed a witch on our bus ride there and the evil Rumpelstiltskin was chasing us to gain revenge.

There is some planned audience participation at every stage from here on in, which Tamsin and I loved, and we felt it added to the whole experience. One poor bloke didn't like it so much obviously though and refused to join in when 'selected', but we were quite impressed that the Cinderella actress at the time took it all in her stride and found a different willing volunteer without breaking a sweat.

The 4D bus ride was fantastic, and there are some other special effects as you go through which mean you feel fully immersed in the story throughout.

There is a photo opportunity with Shrek right at the end of the story, and also an area with some further photo opps and a fun Kung Fu kicking game to play. After that, you are shown a magnificent travel album with your original green screen photos in - I have to be honest though, I was amazed at how many people were willing to pay £25 for this! I think the professional photos were available to purchase for £15 - still quite a lot in my mind, but to be expected at this kind of touristy attraction.






The whole experience lasted about an hour; we thoroughly enjoyed it and I reckon I can stop feeling guilty about only taking one girl as Sasha would have hated it. You are effectively 'trapped' as you go through each part of the story, being shepherded along with around 20 other people. The group size was good and there was always room to see what was going on, but some parts of it could be scary for younger children and challenging for those who struggle with attention issues. It's billed as being suitable for children aged 6-12, but there were quite a few toddlers on our tour!

If you buy online in advance, tickets are very reasonable - £18.90 for an adult and £15.30 for a child. It was a great trip out for me and Tamsin, I'd thoroughly recommend it!


Disclosure: we were given tickets in exchange for a review of this attraction; all words and opinions are our own.
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