Friday, 20 January 2017

SEND Stars 8

Welcome back to my SEND Stars series, where I introduce you to the blogger behind the SEND blog.

All of the writers featured in this series have a life which involves Special Educational Needs and Disabilities in some way. My very basic questions are barely scratching the surface of the complicated lives they lead. Of course they would love a bit of extra support, so if you can pop over and like their Facebook page, or read and comment on a post, it will all be much appreciated.

Time for Blogger Number 8 in the series....

Kelly It's a Tink Thing

Who are you and how old are you? 

I'm Kelly, soon to be 40(eeeek!).

Who else is in your family and what are their ages? 

I live with my husband Dave (soon to be 50, ha!), and my children, H, 9 and Tink, 4. Dave also has a son, J, who is 18. 

Which members of your family have SEND (Special Educational Needs and Disabilities) or additional needs, and what are those needs? Is there an official diagnosis and if so, what is it, at what age was it given and by who? 

Tink has a diagnosis of ASD, which she received at the age of 3 and 3 months. She was assessed through our local Child Development Centre (CDC) by  an SEN teacher, paediatrician and speech and language therapist.

Can you list the job roles of everyone you've been involved with on your SEND journey so far? 

SaLT, Paediatrician, SEN teacher, nursery nurses, health visitors, educational psychologist, communication and autism team, occupational therapist, school SENCo and teachers, various support groups.

Are your children in school (if so, what type of school) or home educated? 

Tink is currently in mainstream nursery, although she should have started reception this year.  We are currently exploring alternative schooling options as her school aren't sure if they're the right setting for her.

What would you like others outside the SEND community to know about your child's condition? 

isn't as scary as it seems at first! Whilst it certainly brings many challenges, it also brings many wonderful things too.  I would like people to be more understanding of the condition - not all people on the spectrum are like 'Rain Man'!

Tell us a fact or funny story about you or your life which is totally unrelated to SEND.....  

I once denied a very drunk Claudia Winkleman more free booze on a train I was working on! (We're talking many years ago, I'm sure she doesn't behave that way in public any more... ;) )


You can read more from Kelly at these places:

Blog name: It's a Tink Thing  
Twitter - @itsatinkthing
Instagram - itsatinkthing

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Thursday, 19 January 2017

Internet safety and protecting children online

So what are your thoughts around internet safety and protecting the privacy of children online? Photo of child on phone Instagram

I've been prompted by a few events this week to revisit this issue, having touched on it a little before in my post To Blog or Not To Blog. A very tech-savvy mum (who writes a fab blog over at Who's the Mummy?) expressed her exasperation with children her daughter's age (same age as our eldest) using Instagram in a way it wasn't intended, to shame and bully other children. I echoed her sentiments and it prompted me to sit down and talk about Instagram and social media in general again with our daughter. 

Then on Facebook I came across the video from Leicestershire police about Kayleigh Heywood. So extremely heartbreaking but scarily easy to see how it happened. Again, I shared this with our older daughter and talked through the issues. Next I read a great post from Joy at The Sensory Seeker which has helpful advice about how to keep children safe online, and then I received an invite to an e-safety evening talk at school. I am planning to attend the talk, whilst desperately hoping it will cover more than the basics. One such talk I've been to before was plainly just a scare tactic to say we should keep young children off social media. 

As a blogger, I've had to learn a lot about the internet and social media over the past seven years, and I've shared as much of that knowledge as possible with our eldest. Some of it has been relevant to Sasha too, particularly when it comes to YouTube, and I'm aware that I still have much to do and learn in order to keep on educating them and keep them safe. I do have concerns about children being online generally, an issue which simply wasn't there to the same extent when we were growing up. However, I don't think we can just ignore them, pretend they don't exist and ban our children from using all gadgets. There has to be a happy medium somewhere. 

Watching, and listening, and learning alongside our children has never been more important. Back on Facebook (yes, it's true my life is full of social media) I read another couple of posts written by autistic adults, suggesting that parents should not share stories about their children with disabilities online. One of them had in the title 'it's a fine line between awareness raising and shaming'. This has been shared by others with comments including the suggestion that any parents who write about their child with disabilities are effectively abusing them. 

Quite harsh, wouldn't you say? I'm well aware that not everyone agrees with the idea of blogging and going public with our story, although nobody has actually said that to my face yet. It's just a feeling you get, you know? I do share some of the concerns which are raised in the posts mentioned above though. There's a feeling that parents are giving away too much information about their children with disabilities, when they are unable to decide for themselves if they wish for that information to be shared. To be fair, this could be true of any mother blogging about her younger children. Deciding what information to share, and when definitely involves a tricky thought process and is not to be taken lightly.

My own view on it is that if I only shared the positives, people wouldn't be getting a balanced picture of our experiences. That could actually be doing Sasha an injustice in the long run, as there would be less understanding of the challenges and differences. 

This story for now is mine to tell, and when Sasha wants to read and understand more then I will be talking her through the premise of it (somehow I doubt she's going to want to read everything I've written over the past seven years!). She may want me to delete the blog, and of course I will do that for her if she chooses. On the other hand, she may want to write her own story, and I'd do my best to guide her through that. I did talk with our eldest at length about my blog before she started secondary school, and she was adamant that she was happy for me to continue writing about her. If that ever changes, I will of course listen to her wishes too. 

In her brilliant post 'how to blog about your children whilst protecting their privacy', Yvonne (who has written the Special Parents Handbook) eloquently discusses this subject. My views pretty much align with hers. There's a very helpful 'Do and Don't' list which I'll try to remember to read periodically. I'm so grateful that Yvonne is out there amongst health practitioners, reminding them that each parent's experience is our own story to tell, and that it is important for our children that we continue to tell it. It most definitely is NOT abuse.

I always appreciate with constructive criticism though, so if you ever read anything on this blog which makes you feel uneasy, please do let me know. Thank you.

Cuddle Fairy

One Messy Mama

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Sunday, 15 January 2017

Siblings {January 2017}

New year, new start.. better photos... well, that was the hope. This photo was at least taken with my 'posh' camera which I've barely had time for in the last 3 months. One day I'll learn how to use it properly.

Stephs Two Girls Siblings in snow Jan 17

Thursday eve, after we had our small amount of snowfall, the girls were outside at 7pm in the pitch black, laughing and giggling as they made a snowman family together. It was lovely to watch - from the cosy warm inside!

Today has been a lazy day at home, trying to avoid the stress of back to school thoughts. Thought I'd try and ask them for a photo together - Sasha's first question was 'why?'.

So I showed her all the Siblings photos I've taken over the years, and she then asked 'but why do you need a photo showing what we look like every month?'

When you put it like that, I guess I don't....

But I'm not going to let that stop me. So I hope you enjoy this photo as much as I enjoyed trying to take it. Here's the only one I can publish from today - heads bowed together as they shared a giggle over how they could sabotage the 'shoot'....

Stephs Two Girls Siblings Jan 17

The Siblings Project - Dear Beautiful

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Saturday, 14 January 2017

Seven years older and a tiny bit wiser...

Seven years ago today I wrote my first ever blog post. Today is my Blogiversary!

It's only thanks to Facebook memories that I remember the actual date the word autism first entered our lives. Since having children I seem to have developed a sieve-like brain, and dates are not something that stick with me.
Steph's Two Girls Sasha in snow
Sasha in January 2010, around the time of her diagnosis
Some events though, stay in my mind as clear as if they happened yesterday. I remember vividly that first meeting with a paediatrician; I can picture Sasha entering the room, her wanting to climb up on the bed in there, the toy box the paediatrician tried to get her interested in, and the way Sasha thrust her coat into my arms and tried to lead me out once she had had enough (about 10 minutes after we went in).

I also remember that the word 'autism' came from my lips first, but that I had no idea why or how I even knew about it. It was the other related words which the paediatrician was using to describe Sasha and her actions which kind of swirled around my mind and made me jump to that conclusion. 

I'd done no reading or watching (or writing!) about autism before that day; it hadn't entered my mind that it was a possibility. The previous year in summer, before she turned two, I'd started to notice Sasha was making plenty of sounds but her speech wasn't coming out clearly. Tamsin had spoken clear words fairly early on, so we did what most parents do, and compared our youngest to her older sister. 
Steph's Two Girls whole family on blue train
Another photo from that time; February 2010. It was quite unusual to get both girls in the same photo back then but we had them trapped here. Who am I kidding, it's still tricky to get them both together and smiling...!
I mentioned it to the Health visitor at the 2 year check up, and she said 'not to worry, all children develop at different rates'. This is of course true, but a couple of months later when we were no further on I decided to research a bit more and discovered that you could refer directly to the speech department if you had any concerns. 

So that's where our 'journey' really began, I guess - we saw a speech therapist that autumn. I also remember vividly the meeting with that lady - I sat in a chair by her desk, Sasha sat at a small table by the door with typical toddler toys on it. I answered all the usual questions about what sort of birth she'd had, what games we played at home, how was I encouraging her speech etc. The therapist wrapped up our session with a direct question to me - 'have you noticed that she hasn't made a sound since we've been in this room?' 

I remember feeling slightly affronted, thinking 'of course she hasn't said anything, you've just given her plenty of toys to play with in a nice quiet room so she doesn't need anything else'. The speech therapist informed me she was going to refer Sasha on to a paediatrician in the same centre - 'it's just routine, nothing to worry about'.

Christmas was fast approaching so I put the next appointment to the back of my mind and got on with the important job of providing wrapped gifts. Once Christmas was over and the New Year dawned, there was back to school for the eldest and so I still didn't have time to dwell on it.

Ten minutes in to that first appointment with the paediatrician though, my mind focused pretty quickly. I watched as Sasha refused to do the basic tests which the paediatrician wanted her to - simple things like pointing out the big yellow circle, or stacking bricks in height order. I knew they were tests which she was capable of doing, she just didn't want to play ball. It was 9.30 in the morning and I realised that I could no longer use the excuse that she was a bit tired. All the previous occasions of refusal flashed before my eyes and suddenly became linked up.

Honestly? It was like a weight was lifted from my shoulders. Sasha was like a typical toddler in many ways; she was generally happy and it seemed she was easily pleased... until I wanted to go out and about to a certain time schedule. The autism suggestion made sense and it was a huge relief to realise that it wasn't just me struggling with the terrible twos and the terrible fours at the same time and making a right hash of it.

Steph's Two Girls in a box
Adding this because it makes me smile as I remember how much they loved playing together in that box...
So we stayed in quite a lot, and became a bit isolated, but I gradually learned how to figure out what made Sasha tick. Actually I take that back; I began to learn, and I'm still learning today. Of course every stage of her life brings new challenges and so the learning will never stop; true for our eldest too of course but with her it's a much easier ball game where we generally get to call the shots. Not so for Sasha.

Pathological Demand Avoidance was the missing puzzle piece; an answer I found online, probably by searching along the lines of 'why won't my daughter wear socks at all, even when it's snowing outside?'. I had my lightbulb moment; we went back to the paediatrician armed with examples of behaviour and she agreed with us. So PDA appears as a second line on Sasha's diagnosis letter - PDA is a type of Autism Spectrum Disorder, so ASD (or ASC - Condition rather than Disorder) is the overriding diagnosis.

I feel extremely lucky to be in the position we are in; we've been supported amazingly by those around us and we've worked with everyone on what's best for Sasha. We don't have all the answers yet, and this year ahead is set to be a challenging one as we figure out schooling and testing and looking ahead to the next secondary school step. 

Blogging our 'journey' (replace with 'story' if you're not a fan of that word) has helped me so much and seven years on, some of the highlights it has brought are the emails from other parents who thank me for helping to make them feel less alone.

One mum recently wrote:

 'I’ve just done some google searching after listening to a radio 4 programme this evening that talked about PDA. I now have tears streaming down my cheeks as I write. For years I’ve struggled with so many things about my daughter who is now 7 and a half. So many of the key characteristics ring true when I thought my daughter was just being difficult, I see her in a new light. It’s given me the motivation and encouragement to seek help and to find out what the professionals think. I just want to know how I can be a better parent to her and how I can help with her education. It’s been a year of struggles with her at school and with no real improvement I really don’t want to be here again in another year’s time.

I’m sure you must get a lot of these emails but I wanted to thank you for blogging about your situation. It is massively reassuring that it’s not me or my parenting style and it has helped me to see the underlying anxiety that I battle with every day.'

Honestly, this is a large part of why I carry on writing, even though I never had any dreams of being a writer. Support from others online here, and on Facebook and Twitter, has kept me keeping on. It's not always easy, finding the time, or the right words, but it is satisfying to press 'publish' and know that some of this information is spreading out, and that it might help people - including my girls.

Steph's Two Girls Dec 16
Christmas frolics seven years on  :)

Apologies for the very long post, but I think after seven years I've earned the right to waffle a bit....

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Thursday, 5 January 2017

House Renovation - Part 8

Funny, I just noticed all my previous House Renovation posts had 2016 in the title, but of course I can no longer put that! Happy 2017 everyone! Wonder if that year in the title was a bit of over-optimistic wishful thinking from me back when we started this project...

Anyhow, if you have no idea what I'm talking about, you can pop over to House Renovation 2016 - Part 1 where I show you our lovely new house that we bought back then (offer made in September 2015, finally ours in December 2015!).

Steph's Two Girls walking into new house
The two girls walking back into the new house after a couple of months 'off' while it was a serious building site...

Except the house wasn't all that lovely in terms of modernisation (am sure it held many happy memories for previous owners though), and definitely only 'new' to us, so we embarked on a fairly extensive renovation project which I decided to share with everyone here on the blog. Part 6 of the project gives a video start-to-finish update which covers most of what happened before building started.

Being the kind of girl who never really desperately wanted to undergo a huge building project, I do tend to feel guilty that this kind of fell into our laps as I feel like someone else would have totally relished this opportunity. However, we couldn't find another property in the area we were hoping for and so began a bit of a story....

New staircase in house
The new staircase leading up to our loft room - the most exciting part of the build so far!

Last time I updated my blog about the house was back in September, so there's been a fair amount of work since then of course. It's still very much a building site, but we are getting flashes of what our home may look like. We are now in full on 'deciding' mode as we speak to first kitchen and then bathroom experts, with a good dash of electricity and plumbing decisions being rashly made alongside those chats.

Here's the little video update I made on January 2nd (please remember, I'm definitely no professional vlogger!) to bring the renovation diaries up to date:

If anyone fancies leaving me comments with style ideas, sources of inspiration or what they love/hate about their own kitchen/bathroom etc, I'd love to read them all this week!

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

Home Etc

Cuddle Fairy
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