Thursday, 17 May 2018

Siblings {May 2018}

This month's siblings photos were actually taken over the bank holiday weekend, when the weather was so gorgeous that we managed to get the paddling pool out. Doesn't happen all that often in this country, so we do like to make the most of it!
stephs two girls in paddling pool

As always, I can't resist sharing the other three thousand, two hundred and eleven photos with you... OK, just kidding, not quite that many. It's always easier to get good snaps of the girls when they're having fun together in the garden though.
stephs two girls fun in sun collage
May is probably my busiest month (June is a close second!) - today our eldest turned 13. Thirteen! I can hardly believe we have a teenager already. I don't look that old do I?! Just testing now to see whether anyone reading is actually of a similar age... I can confirm that she hasn't turned into a Kevin overnight, phew.
Today's task was to create a birthday cake for her. I'm a bit out of practice on the baking and decorating front, but was pleased when Tamsin seemed happy with my efforts. I wonder if you can tell what her current interests are...?!  





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Tuesday, 15 May 2018

Positive PDA Action Day

Today is PDA Action Day; a day to talk about Pathological Demand Avoidance and to spread understanding as far and wide as possible. If you're here because you are trying to find out more about PDA, I suggest you start with my post 'What is PDA?' and then my suggestions of books on PDA for further reading. Then feel free to click on every link in this post, which I hope will take you to the most useful resources. I've also created a Facebook group (PDA Info Group - Steph's Two Girls) for anyone to join, in which I've posted many articles about PDA and even more resources - so much is available online if you know where to look and it has all helped us since diagnosis.
stephstwogirls 2011 holding hands

My blog was started as an online diary to try and help others understand our youngest daughter, who was diagnosed with autism at the age of two and a half. It was always a blog about both girls; although I knew very little about autism when we first heard the diagnosis, I always knew it would affect the whole family and sibling issues is an area which I still have much to write about (watch this space!).

Over the past couple of years I've written as much as I can specifically about PDA. My most read posts are the ones explaining what Pathological Demand Avoidance is, what PDA strategies are helpful and how PDA is different from ODD (Oppositional Defiant Disorder). I've shared many stories from other families living with PDA in my series 'Our PDA Story'. I regularly link back to the PDA Society, who are a team of volunteers who all have children with PDA, and who helped us so much in the early days when Sasha was younger.

Today's Action Day started off very positively with a feature on BBC Radio 5 Live. At lunchtime ITV will hopefully cover the peaceful march in Westminster which aims to raise awareness and highlight the need for more recognition, particularly among healthcare professionals. Anna Kennedy OBE will be speaking there, along with Sally Russell OBE, two very inspirational mums who understand the need for more action on PDA. I wanted to be there myself, but I won't bore you with the long story about why it wasn't possible (I'll save that for my Facebook page post later...). The PDA Society have produced a Call To Action for all authorities to produce more guidance on PDA.

As it is Mental Health Awareness Week, it is also important to look at how this ties in with PDA. 'Being Misunderstood' is a document showing the results of a survey of nearly 1500 PDAers, their families and professionals which was undertaken at the recent PDA Society Conference. This infographic gives an indication of some of the areas of difficulty; school plays a large part in all of this not surprisingly. 


There's a great new page on strategies which has been created for today over on the PDA Resource website; a group effort of real life practical suggestion of how to help.

There are ups and downs to living with PDA but plenty of positives too, as I wrote about recently in my post Autism and PDA positives. It may not be my most read post yet, but it's definitely one of my favourites!
Stephs two girls in pool 2018

What keeps me going through it all is, of course, these two girls. Sasha is now 10, nearly 11, and our eldest will turn 13 this week. Siblings of children with PDA have to learn how to adapt and not be dominant; our eldest girl is the most caring, understanding big sister who uses the PDA strategies without complaint (most of the time). Both girls are amazing in their own very different ways, and I hope that at some point in the future this blog could become a place for them to share their points of view too.

If you'd like to hear more about our story, you can hear me chatting with an autism specialist in a podcast over on YouTube:





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Sunday, 13 May 2018

School refusal and an autism podcast

So last week I was writing about the positives of autism and PDA, and then this week it all went a bit 'tits up' if you'll pardon my turn of phrase.
Sasha building dens in wood

The hot weather we enjoyed over the bank holiday weekend left Sasha feeling exhausted and so she didn't make it into school on the Tuesday. Instead, we played it very low key at home and had a very quick trip to the local bluebell wood for some fresh air. There, Sasha enjoyed building dens with sticks; she didn't want me with her, preferring to run around with her own imagination.

Her return to school the next day went smoothly in the morning but there were sadly a few issues during the day which led to Sasha having a few minor and one pretty major meltdown. When I collected her at the end of the day, she looked tired. I snapped this photo of her because it was so unusual to see her with her hair down - she always has it tied back in a ponytail - the bobble had come out during PE.
Sasha with her hair down

At bedtime Sasha told me in brief the events which had caused her to be so upset - and she came up with a new word about how she had felt. 'Sangry'. Sad and angry! I was delighted though, that she had been able to communicate some of the problems even if they were only in brief. This is a huge step forward for us.

The next day Sasha went back in and had a much better day; Sasha's lovely teacher called me after school and we talked through what had happened and discussed future plans. All seemed OK and I felt relieved that Sasha's behaviour had been understood and that we'd all had good discussion about it.

On Friday morning, we drove to school as usual, but when we pulled up in the car park Sasha became very tense. She refused to get out of the car and took up her old mushroom position, with her head down. We stayed like this for half an hour, interrupted with bursts of crying and a little screaming, and it became clear that there was no way Sasha would be going into school. So I returned home with her, having had to cancel my plans for that day.
Sasha head down in car

Sasha knew that once home there would be no technology; no games or YouTube, which are her favourite things to do. Despite this, she still preferred to be at home, and calmly went to her room to read when we got in. Sasha never chooses to read at home, so at least some good did come of this day! After lunch we went out to a playground for some fresh air, which felt a little weird when she should have been in school. I do wonder whether she has been a little bit under the weather with something. Sasha finds it hard to let us know when she is poorly though, I'm not sure she understand her own body enough yet.

It's so difficult trying to explain to others that what I was doing this week was for the good of Sasha's mental health. There is no point in forcing her to be somewhere she doesn't want to be; we make joint decisions and therefore she can really trust me. It wasn't that she just wanted a day off school; she was communicating to me that she really couldn't be there.

Sasha is still saying that she thinks this school is the best place for her and I'm hopeful that she will go back on Monday and we'll put some more plans in place for next Friday. School refusal is tough, but some of the stress and worry for me is actually around what others will think, which seems a little crazy as I type it. The system is set up to be one way, when clearly for some children it needs to be more flexible. Trying to make my child do something which she clearly cannot do, for whatever reason, is not going to end well. Digging to discover what is causing the issue is so important, and letting her know that we are in this together.


Now onto something new... Have you heard of podcasts? It's a fairly recent discovery for me, but I've found them to be great for when you're doing the housework or odd jobs etc - and hopefully I'll get more time to listen to some when I start going for long walks in this lovely weather we're set to have!

Recently, I was interviewed by David from @TheSensoryHour for his series of podcasts on autism, so right now you can pop across to YouTube and hear me witter on about life for us since Sasha's diagnosis! Do let me know what you think of it - have I got a posh Northern voice, or wot?!




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Wednesday, 9 May 2018

Our PDA Story {Week 37}

Time for week 37 in my blog series 'Our PDA Story' which aims to shine a light on the experiences of other people and families living with Pathological Demand Avoidance.

I'm so chuffed (Northern word I think... translation = pleased) that so many others have chosen to share their stories via my blog; I know for a fact that it really helps other families to not feel so alone. I've had lovely messages telling me of how the posts in this series have given renewed energy and strength in times of need.

I'm delighted to introduce the writer of this week's post as Natalie Menagh, who was a speaker at the recent PDA Society conference. Natalie is mum to a six year old boy who has a diagnosis of ASD with traits of demand avoidance. She also happens to be a qualified SENCo and Assistant Head Teacher in charge of inclusion at a primary school, and this gives her insight into a world which many of us other parents don't get to see so close up. I'm sure though, that her family's experiences will be familiar to many.


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Will was born at full term. He had a difficult birth due to the cord being around his neck but he quickly recovered with oxygen. He was a placid and happy baby who was really engaging and funny. We noticed it seemed to take him a lot time to master sitting up, crawling and later walking only when he reached 18 months. He seemed to come to everything late but then make bursts of progress, although he had been watching for a long time and then only tried something when he knew he would be able to do it! He’s still the same….reluctant to try new things and waits until his anxiety subsides about his own ability before doing something. 

I spoke to the health visitor at 20 months when no words were coming with his speech and she came to do his 2 year check the day after his second birthday. He failed his two year check and she was very concerned and referred him to a paediatrician, audiology and a speech therapist. The day he saw the paediatrician however was a very different day and he was 4 months older. He had a lovely time with her and showed good eye contact and social engagement so she felt he was perfectly fine. She did agree to review him a year later in case anything changed. 

His speech therapist said he seemed ok and said I should come to expressive language sessions. He seemed to understand what was said to him but just wasn’t speaking much and what he did say was very difficult to understand. He was tested by the audiologist and they found glue ear in both ears. Everyone then agreed this must be the cause of his behaviours. He eventually had grommets fitted and his adenoids taken out just before the age of three and his speech came on quite suddenly after this. We started to think everything had been down to hearing. All the while, we had continuous reports from his nursery of him biting and hurting children. His behaviour still remained a concern despite speech coming along. Nursery referred him to a specialist teacher who recommended social skills type activities and after progress was made he was discharged by most. 

He then transferred to a school nursery and this was when behaviour really started to show in this setting. He was referred to a child psychologist who identified possible ASD just after he turned four. I had seen two more paediatricians by this point, one thought he was ADHD and the other agreed he seemed ASD. He was referred for an ASD assessment but it just didn’t seem to fully fit. 

He was so interested in being with other children and he seemed to be able to be so charming and appeared to have imaginative play skills due to his engagement in role playing. He also didn’t respond to visuals or rewards or structure. During this time I remember the real low we both felt, how sad and helpless. It has been described as ‘grieving’ and that seems like the right description of how it felt…processing the loss of something…a particular future or a particular life. I have never felt anything like it. 

We continued to struggle with the idea of ASD for a couple of months but then the light bulb moment came. As a SENCo in a primary school I received some advice from a specialist about one of the children in my school and it was a description of PDA. Whilst trying to understand this in the light of this particular pupil, all I could think of during reading was Will. It described him with total accuracy. I showed my husband who straight away agreed. We googled PDA and looked at all the materials on the PDA Society website. We completed the checklist which really helped and we went straight in to tell the school. We started writing down ideas for strategies we had begun to use which really worked and spoke to his paediatrician and psychologist. They accepted that any strategies that were working were important to share. 

My husband and I talked daily about the reasons behind his behaviours and we both read the book by Jane Sherwin and also the handbook by Phil Christie and Ruth Fidler. We even bought the school a copy. School had responded brilliantly and advertised a 1:1 LSA post for a child with ‘significant compliance resistance’ (a good way to describe our Will, I felt). 

Since then we have gone from strength to strength, learning and developing our understanding all the time and bringing others with us on our journey. His school have been truly amazing and they really know Will and look beneath the behaviour to the anxiety below and respond so well to him. He is six now and doing so well but he has a massive amount of support and understanding from so many people. We have all worked so hard in developing this understanding in those around him. I tell as many people as I can about PDA and the impact it can have.


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Thanks for taking the time to read. Comments are much appreciated and sharing on social media could really help get these posts to people who have still not heard about PDA.

For more reading about what Pathological Demand Avoidance is, please see 'Challenging Behaviour and PDA', and for an idea of how to help please read Strategies For PDA

There's a chance PDA can be misdiagnosed as ODD (Oppositional Defiant Disorder) but there is a distinct difference. More information can be found here: the difference between PDA and ODD

A variety of experiences of living with PDA can be read using the link Our PDA story series

If you feel up to sharing your own experiences with my readers to help spread understanding (this can be anonymously), please email stephstwogirls@gmail.com. 

The PDA Society website has a huge range of information about Pathological Demand Avoidance, and there are also links to info on the PDA Resource website.






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Tuesday, 8 May 2018

Autism and PDA Positives

Earlier today, I came across an infographic on Facebook which I thought was well worth sharing. Designed by a lady called Harriet Cannon, who posts info relating to autism on LinkedIn, this was a good reminder that we need to let people know that there are many positives to being autistic.
autism positives infographic

I've always kept this blog as a true reflection of our life; I share as much on here as I have time for. That means the good and the bad is included, but there's never any intention to make it too much of one or the other, or indeed to make it balance out! It's just life, as it happens.

I've also shared many other experiences in my series 'Our PDA Story' and they're not always positive sadly; very real, but not always easy reading.

Some bloggers have recently received much bad press and even trolling for writing posts which describe the challenges they face. As per usual, I don't see this in black and white - I've always been a 'grey' kind of person. I'm very much for 'keeping it real' but I'm also aware that too much negativity can spread and give a false impression, so it's important to talk about the positives too. I think this infographic does that in a good way, and so I asked the author if she'd be OK with me sharing it here. 

When I got in touch with her, I also mentioned the fact that not all of these points are positives for Sasha, or indeed for every child. Some children and families may read this and agree with every phrase; others not so much. Especially on a difficult day. After a quick glance, I hadn't seen the words at the bottom of this image which explain just that! That's why it's important to talk about autism and the positives more.

Hot on the heels of this was a new image created by Sally Cat in time for PDA Action Day which shows words used by parents to describe their PDA children. There's several in her which fit the bill for Sasha. You may have to zoom to see them all, so here's just a few I've picked out: vibrant, inquisitive, creative, witty, kind, loving, entertaining and awesome!




I also wanted to take this chance to share positives for Sasha. We have always said how lucky we are that she is generally happy and curious; she loves a joke and has a good sense of humour. She is kind and caring and currently cites her job aspirations as being an author, game developer, baker, running a cattery, leading an after school club for children and possibly being a teacher!

Sasha can concentrate for long periods on topics of her choosing and has an amazing memory for detail. There's not much about Pokemon that she hasn't taught herself over the past year, and she can still remember words and scripts from DVDs she watched when she was three. Since starting her new school we've discovered that she doesn't judge differences in others; she takes everyone as they are. She is supremely honest and loyal and has the most amazing imagination. 

These are just some of the characteristics I love about our amazing autistic daughter. I wrote a post this year called 'Why I'm happy that my daughter is autistic' and there's more in there. Obviously, I'm biased, but I do believe other people love her too...





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