Sunday, 7 February 2016

Pet loss, Depression and Mental health issues

It's been a tough week, and it culminated yesterday in a day where I began to feel the beginnings of real depression.

The family upset from death of a much loved pet, late bedtimes and broken sleep at nights following that, neighbours putting in an objection to our new extension, dance class funding pulled, secondary school allocation thoughts, an unexpected school meeting and a very-near school refusal on Friday, the day I was to start my new job, all contributed to the stress and unhappiness levels rising and the mood sliding to somewhere below where it has ever been before.

Today the sun has come out and with it a little bit of worry has lifted; enough for me to see my way through the fug again. But it's left me thinking of all those other people who will be having difficulties, today and next week, and wishing I could help.

I was feeling depressed, and it's the closest I've been to not being able to drag myself out of it, but I wasn't actually depressed. Many people see their GPs and request medication to help them function every day. In the world of 'Special Needs', I have come across many mums (and probably dads) who are struggling to get through every day thanks to the additional challenges they face. It's not just in the Special Needs world though; there are many reasons others have challenges which they feel unable to face too. It's nothing to feel bad about, and there is some comfort and safety in numbers, and knowing others are in that place too.

One thing we can do, is to talk about it. Mental health is such a wide and varied topic, but if any forms of it can be discussed out loud, more can be understood. Mind.org.uk is a great charity with lots of information and resources, and their website is a good place to start. There's advice and support on everything from anxiety and panic attacks, depression, seasonal affective disorder and schizophrenia to sleep and self-esteem issues and it's well worth a look. Another charity I hadn't heard of is SANE, and they also have a great website. It's good to reach out to real people though

It could be that the quiet mum at school has a lot on her plate and doesn't know where to start; maybe she is feeling lonely and as if she has no friends. Either way, a coffee and a chat may be all she needs - sometimes even a smile is enough. I'm fine, this post isn't to get people talking to me, I just hope that we can all be a little more tolerant of, and helpful to, others around us.


I'm dedicating this post to our beloved Stampy; our adventurous ginger cat, gone too soon.




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Monday, 1 February 2016

Disney inspires our Healthily Ever After moments with Frozen and Inside Out

Disney has played a huge part in our life as a family ever since our eldest was born and she first grabbed Pooh Bear. So when we heard that Disney were launching a campaign to help inspire families to be healthy and active, with the hashtag #HealthilyEverAfter, we were very keen to be a part of that.

The campaign features this video below and Disney hope that you might watch with your children to kick-start a conversation around healthy living:


There are lots more activities and ideas on the Disney Healthy Living website, such as workouts with their favourite characters, and crazy fun food ideas to inspire the children to eat more vegetables.

Our first personal challenge was to write about times when we have been inspired by Disney to play together.

Inside Out was such a huge hit for our family - it's the only film that Sasha has been able to sit and watch the whole way through. More than that, she knew about the film before it was released (thanks to YouTube!) and it grabbed her imagination even before we went to see it at the cinema. It helped us look at emotions from a different point of view; something that can be difficult for children with autism to grasp. We have, of course, managed to collect several items of merchandise, from soft toys to talking dolls to playsets, and all of them fire the imagination on a regular basis. This time though, Tamsin was keen to create a little movie with a story based around getting outside.


Sadly when it was time to film the video, Sasha decided she'd rather not be behind the camera. No matter; we weren't trying to create a film star, we were just aiming to come together as a family for some play, and it definitely worked. The girls had so much fun coming up with ideas for this, and then enjoyed a good bounce together outside in the (chilly) sun!

We were also asked to think about how our children inspire us to get active. Thanks to Sasha's love of water, we swim regularly together as a family but I decided that it would be too easy to write about that and link it to Finding Nemo (one of my favourite Disney films). So instead, I thought I'd share two instances which the film Frozen could have inspired, involving skating and snow.... 

Disney's film Frozen is all about two sisters, one of whom is a little bit different, and the other who battles through adversity to keep them together. It's a very sweet message which is particularly poignant for our family I think. The girls have unwittingly identified themselves with the relevant character and the Happy Ever After ending always gives hope. 

Just after Christmas, we decided to get a little active in the cold like Anna and Elsa by going skating together as a family. We loved it so much that we went back two days later with friends! A few days later the girls were so excited at the first snowfall of the year, and it inspired us to all spend time outside. Not quite enough snow for a decent Olaf, but we did play a little snow cricket. 


So now we'd like to know how you inspire your family to be healthier and more active? It would be great if you can let Disney know on @Disney_UK using the tag #HealthilyEverAfter.



This post is part of Disney's #HealthilyEver After campaign with BritMums, sponsored by Disney. Share your stories and be inspired at DisneyHealthyLiving.co.uk and live Healthily Ever After (#HealthilyEverAfter).
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Sunday, 31 January 2016

Real or fake names? Is internet safety clear-cut?

Internet safety is a vast topic which, being a big user of the internet and social media, I have researched and pondered about on more than one occasion.

There are many differing views on it; those who barely ever use it, in case details get cloned or nasty people find out where you live, to those who do online banking and don't think twice before posting intimate things on Facebook (often helped by a glass of wine or two).

I think we all have friends or family who fall into one of those two descriptions, but we also know plenty of others who sit somewhere in the middle - or who like me, can swing from one side of the line to the other depending on what day it is or how good you are feeling.

Some choose to never use real names, some wouldn't dream of posting a picture of their child on the internet. Six years ago, I started by doing both of these things. My blog has always been about our personal story, and originally I didn't think many people other than family and friends would read it.

When I decided a few months back that I would change the girls' names on my blog so they weren't immediately identifiable, I was following the example set by the write of my favourite blog (A Diary of a Mom). To be brutally honest though, she has more readers than I could ever dream of, so I'd say it's more of a worry for her. I totally agreed with her decision at that time, and felt it was the right thing to do.

As our eldest approaches the next stage of schooling, where she will mix with children who are becoming ever more independent, and who are big users of the internet and social media, I wanted to try and remove the chances of bullies finding information about her which they may be able to use against her. So I set about changing the girls' names to random new ones (Tilly and Sophie it was, as I let Tamsin choose and funnily enough she was drawn to the name of someone else she liked to watch on YouTube).

I've discussed all of this with Tamsin along the way - even from the beginning, she was adamant she was comfortable with my blog and everything we've put on there. As she gets older, some of the material may embarrass her more, or she may like to laugh as she looks back at it and remember the fun we had. Probably both of these things will happen, at different times. Sasha is still at the stage where she doesn't understand much about the blog, or her difficulties, but of course we will talk more when the time is right for her.

The trouble was that it never felt comfortable for me to write those names for my children. It made me stop every time, and when I read it back it just didn't feel right. So I got into the habit of replacing the names with 'oldest daughter' and 'youngest daughter'. That just felt too cumbersome to be putting in every post though, and I started to consider using just initials. Again, it didn't read right.

So I took a step back and thought long and hard about it. I'm switching back to what feels right for me, so that I don't give up writing all together. I've always wanted to be open and honest while I share our story, so it's too difficult to lie about the girls' names. I can't help wanting to share photos of my girls either; if I'm honest, it's also hard work trying to find free and relevant photos of anything else to share with every blog post!

In terms of bullies, I think they'd find a way to cause trouble with or without a blog, and we're better off educating Tamsin on how to deal with that rather than trying to avoid the issue. We already had that opportunity a couple of years ago, when we first posted a Minecraft animation about Stampy that Tamsin had made to YouTube (it's had over 70,000 views, and 325 comments), and she received a wide mix of comments before we worked out how to disable them.... It was actually a really useful learning experience though, and going forward everyone can be reminded that she was only 8 when she made that, so it was age relevant at that time. We're just about to go through similar with Sasha too, as she has independently worked out how to leave comments on YouTube videos herself... under my name though, which is slightly worrying!

I appreciate that these decisions will be different for other people, and that there will be plenty who disagree with what I'm doing, but we all have to make our own mistakes (or successes) in life and so for now this is my choice. I'm not promising I won't change my mind again in the future of course...

To finish, here is the obligatory picture to help make the post more interesting ;)

www.stephstwogirls.co.uk

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Wednesday, 27 January 2016

Parents are Experts

There's a lot of good blog posts out there on what it's like to be a parent of a child with additional needs. 

A great post which I've just come across is called 'Am I spoiling my child or accommodating his special needs?' and below is an excerpt from it. It's so great that I just had to reblog some of the words here - but you should absolutely click on the link and read more. This is just a taster and the rest of the post will make even more sense. 

An accommodation is something that helps your child function as close to the level as possible of other children who do not have the same special needs. With autism, many accommodations are social accommodations, like not requiring him to eat at the table. Social accommodations are more likely to be perceived as spoiling, because the need is not as obvious as the child requiring a wheelchair or hearing aids. Your child has clearly shown us that he needs help to function in certain situations. You are accommodating him so that he can interact with and engage in the world as much as possible. That is not spoiling him. That is helping him. That is being his mom.

Spoiling and accommodating are two words which are similar and can be interchanged. I know that I have to live with the knowledge that other people believe I am not strict enough with my autistic girl; that if I just stopped letting her choose so much then she would eventually give up wanting to have control herself. Erm, if only it was that easy. Don't you think I would if I could?! There's a reason she has a diagnosis of autism with pathological demand avoidance (PDA*) behaviours; it's not just a label made up for the fun of it. I don't spoil her; I make allowances (or accommodations) for her needs. It's different. 

Of course I do spoil her on occasion too, by buying her one more toy, or letting her have a little more time on the technology of her choosing for example, but it's not constant, and it's no more than other parents on average. We do teach boundaries, and she most definitely knows right from wrong where it matters. Those boundaries may just be different in our house to yours; I personally don't think that trying to force her to sit at a dining table and eat 'properly' is ever going to have that desired effect of us all being able to go out and eat in a posh restaurant. That's one goal I've given up on - maybe it wasn't so important to me in the first place though. In that case, it definitely shouldn't bother you.

Sadly I'm not sure of the exact source of this writing below; I do know it was given to me during an Early Support course which I used to be a Trainer for, and it has stuck with me ever since. Early Support was a great government initiative which has sadly fallen by the wayside in times of cost-cutting, but it was a lifeline to me not long after our daughter's diagnosis (reminiscing here but an old post of mine talked about this). 

Early Support was intended to help parents of children newly diagnosed with any kind of special needs find their way through the jungle of information on Special Needs (see also Special Needs Jungle, another great resource) and there are many free resources available to help parents which I hope to go into more another time. For now, this is the key message I'd like to be taken away:


I need as many other mums as possible to read this post, because it's important. It was easier for me, with an older, typically developing (or NT, neurotypical) child to compare our youngest with; in some ways I could see the difference. I feel strongly though for all those who don't have the benefit of a close example and who do have to put up with their parenting being challenged. The challenges can often be verbal, but almost as bad is the knowledge that others are thinking it even when they're not saying it.

None of us are perfect of course, but so many mums are crumbling needlessly under the weight of others' opinions and I want to send them this reminder. In 99% of cases, YOU, as the parent/carer, are the only expert in YOUR child. You spend the most time with them. Every child is different and may benefit from a different approach. Please stay strong and confident in your own abilities to parent. For those reading who have friends or acquaintances with children with additional needs, please bear in mind that a little support can go a long way in most cases.



Sons, Sand & Sauvignon

* for more reading on PDA (Pathological Demand Avoidance), a type of autism, please visit www.pdasociety.org.uk.
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Wednesday, 20 January 2016

Is praise good for everyone?

So today was the first Sweetherts dance class back in the New Year (to see how this went for us before Christmas, please read my previous post The chance to dance). The girls were very excited about going again, and were delighted to see the same great teacher.


Today, in half an hour, the three girls in the class managed to choreograph a whole funky dance routine together (to Fight Song) and then perform it for mums at the end of the session.

It brought a tear to my eye (as far too many things seem to do these days...); for our youngest to be able to express her creative side and also actually follow through on directions is nothing short of amazing.

At the beginning she scrunched her face up with the shyness/embarrassment of being watched, but it was clear she wanted to perform the routine anyway - I think her love for music just overruled the anxiety. At the end, the mums clapped (of course) and youngest girl clapped her hands to her ears, to stop the noise.

All brilliant. Then at bedtime, I whispered to her how much I had loved it, and that I thought it was amazing that she had worked with the others to make the dance up. I was going off the premise that if she knew how much we had enjoyed it, she might feel proud and want to do it again.

Her reply, with a sigh, was:

'Mummy, you don't have to do that, congratulate me, you know. I kind of like to be happy and proud but no clapping, too noisy. Too erm, congratulating. You know me, I don't like too much noise or too much people. Anyway, I wanted to do the whole dance, not just my bit.'

Love how that's told me. Too much praise is not a good thing for many autistic children; it can be overwhelming. On top of that, the noise of clapping has always caused our girl issues, despite the fact she is very able to make more noise than that herself!

It also highlights how difficult it was for her to share the choreography with the other two girls, and to not be in control of the whole dance herself. I count every time that she agrees to relinquish a little control as a huge achievement - but with the understanding that it must always be baby steps and done in a 'fun' way.

To finish off on a tangent... for a while when she was younger, I kept a record of the strange turn of phrase. It's at times like this that I feel hugely disappointed with the lack of Speech and Therapy input over the last six years. We've received no support and yet it is clearly an area where some work could be done - if only someone could make a 'fun' YouTube video playing Minecraft whilst speaking perfect Queen's English (minus American slang such as her current favourite, 'butt'), I'm sure there'd be huge excitement in the autism mums community.....
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