Thursday, 20 August 2015

Siblings {August}

We've been slightly too busy this month for me to snap a shot of just my two girls together, so instead I'm stretching the theme slightly - to Siblings and Cousins. After all, the cousins are siblings too!



We've been really lucky to spend two lots of time with my eldest brother's children this month - once when they visited us down here, and once when we all went back to visit my parents, in my old hoemtown where I grew up. I love that place so much - but more on that another time. The siblings and cousins had so much fun together and got on so well, despite only seeing each other once a year or so. I do think that blood bonds can be quite amazing. So anyhow here's a handful of pics of them all together. We also had the great news that my younger brother has now adopted a little boy, so another cousin to be added to the mix, yay!










dear beautiful
read more "Siblings {August}"

Wednesday, 19 August 2015

This Is Our PDA Story (Week 15)

Welcome to Week 15 of 'This Is Our PDA Story'. This is a series which I started back in January, opening my blog up to other families living with Pathological Demand Avoidance (PDA), so that the true stories of how PDA affects others could be told. We've heard from a variety of parents of children with this type of autism, and adults with this condition, all with slightly different stories but all with one thing in common - challenging lives.

This week another Mum has come forward to talk about how their lives have progressed, and as usual I can draw many comparisons with ours. It's not a short story - but then few of them are. It is SO worth a read though, I hope you will get to the end and then offer some support.

-------------------------------------------------------------------------------------------------------

Guest Post – What does PDA mean to me?

Hi, I’m Doubtfulmum.


I was fortunate enough to meet Steph on a Facebook PDA Support Group and when she asked for guest blogs relating to PDA, I was happy to contribute.

So here is my PDA story.

In 2009, I gave birth to my long awaited and much wanted first son. I was elated, overwhelmed with love but hugely vulnerable and nervous about my ability to actually raise a child.

From the moment I met him I knew he would be trouble. In fact, before he even entered the world I was threatening to have stern words with him. He never stayed still in the womb, kicked me and turned in my tummy with forces enough to make me sick, and gave me a hellish labour that traumatised me for many years afterwards.

As a young baby he was a baptism of fire. He was very alert, nosey, fidgety and disliked affection. As I held him and gazed adoringly into his eyes, he would look away: more interested in what everyone else was up to around him. As soon as he could move, he would wriggle out of cuddles, and always seemed frustrated about everything. When he could crawl he was frustrated he couldn’t walk, when he walked he was angry he couldn’t run, when he ran he was annoyed he couldn’t talk.

By 9 months old I thought he had hit the terrible twos. He was already throwing tantrums, and by age 1 he would become so angry when he didn’t get his way that he would turn blue from breath holding. On one occasion, he held his breath so hard he passed out and landed head first on the dining room floor in a pile of washing and all because I wouldn’t give him a banana.

At age 2 he was expelled from a private nursery for biting and pushing other children, and his first childminder gave up on him after just 3 months, claiming he demanded too much attention.

At this time I first approached my GP for a referral for my son’s challenging behaviour. He was referred to the relevant Child Development Centre who rejected the referral, claiming that his behaviour could all be deemed normal for a two year old and recommended I approach the Health Visitor and take up parenting classes.

I contacted the Health Visitor, who met him briefly for a standard two year development check and declared him a polite and remarkably smart individual. She provided me with parenting class dates that I couldn’t attend due to my working hours and as a last resort referred him for a hearing assessment at our local hospital. Of course his hearing was normal, in fact now I would go so far as to suggest it is above normal... this boy can hear his dad arriving home before his car has even entered the road.

Looking back, I laugh as I recall the hearing assessment itself. He was so hyperactive and non compliant with the doctor’s instructions for the test, she called in a trained professional to “play” with him while she conducted the check. He ran rings around the specialist, seeing right through her attempts to coax him into compliance, and left them and the room all rather dishevelled as he exited the hospital like hurricane Katrina.

Having failed to convince any of the medical profession that my son and not I was the issue, it was at this point that I started the Doubtfulmum blog. Feeling a total failure and questioning everything I did as a parent, my posts acted as therapy for my then fragile mind and I hoped that by writing honestly about my mishaps I might reassure other “doubtful mums” that they could only be doing better than me.

For a period, we blundered on. We found him a place with two new experienced childminders who seemed to turn his behaviour around away from home, and by age 3 he joined pre-school, which, after a few preliminary hiccups seemed to provide him with greater stimulation and routine (I’ll never forget him being hauled into the teacher’s office in disgrace after just two weeks for refusing to comply with a demand and then spitting at the teacher when she forced him to do it).

His behaviour at home was still extremely challenging, and attempts to channel his apparent hyperactivity into football and swimming lessons failed spectacularly. But by this time, I had convinced myself that he was just bright and highly strung and if we consistently adopted super nanny techniques he would eventually grow out of his tantrums and do as he was told.

But at age 5, things started to unravel almost as soon as he entered Year 1 at school.
Within weeks he was exploding at home the very minute he would walk through the front door. His tantrums were extremely wild and aggressive and could be sparked by the simplest of requests. After years of distrusting my own parenting abilities, I hit a new low, and at times began to question whether my child was hell bent on destroying me.
But eventually he confided in me that the transition from Reception to Year 1 was too difficult because he wanted to play all the time, but they expected him to “do work” all day. To make matters worse, his one very best friend of two years had dropped him like a hot coal for another boy in his class and he was totally isolated at playtimes.

At this stage, believing the issue was his age (he is one of the youngest in his year) and the loss of his friendship, I planned play dates and contacted the school to ask for additional support. They attempted to help him form new friendships, but were largely unmoved by his struggle to transition to the increased pressure of year 1.

The play dates were disastrous and by Christmas, despite consistently applying multiple tried and tested parenting techniques, his meltdowns were escalating violently again at home. In addition the school were complaining that he was chewing his jumper in lessons, which they set about stopping by encouraging teachers and his own classmates to tell him off every time they caught him at it. Wanting the teacher and peer pressure to cease, my son switched from chewing his jumper to picking his fingers, toes and behind his ears instead.

Once more, I involved the school who insisted he was a model pupil who was happy at school and suggested I was the problem, recommending parenting classes.
And then this year, I experienced my light bulb moment.

I watched the Channel 4 series “Born Naughty”. There was a kid on it who was a Jekyll and Hyde character. Sweetness personified when she was left to do as she pleased, but a violent, house trashing demon as soon as her parents asked her to do something she didn’t want to. I sat agog as I watched her actions and said to my husband “she’s just like our son”. A few days later, another mother from the series was on ITV’s “This Morning” discussing with Philip Schofield the severity of the meltdowns her son was having. Listening to the description of her son from start to finish, I thought “holy crap, this IS my son”!
During the Born Naughty series, both children were eventually diagnosed with PDA, so I started to conduct my own research into the condition. I visited websites, joined a support group and purchased several books. I showed the information to my husband who agreed whole heartedly that it fitted our boy to a tee. I sent it to my parents, who despite previously assuring me that I was just blessed with a lively and spirited boy, had to concede that he matched 90% of the PDA profile.

Having seen the light, I set about approaching the doctor once again for a referral and contacting the school to ask for support. To cut a very long story short, after speaking to the GP, the Health Visitor, the school SENCO, the school nurse, the local council and an Autism charity, I have got no further forward, other than to be sent dates for MORE PARENTING CLASSES! Having wasted the best part of 6 years being accused of poor parenting, I have bitten the bullet and am now awaiting a date for a private assessment.

So, while we await a diagnosis, what is our life like with a suspected PDA child?

In summary, it’s tough. It’s exhausting. It’s emotionally draining.

Our son dominates our every waking moment, and we live life on eggshells.

Every day he goes to extreme lengths to avoid the normal demands of life. On good days he can be persuaded to comply if demands are posed as games, competitions, challenges or he is in control of when/how he completes them, but on bad days nothing will prevent a violent meltdown. Normal parenting techniques such as the naughty step, confiscating toys or removing privileges and reward charts only intensify the meltdowns.

Whilst appearing sociable and wanting friends, he is very much on the periphery of any friendship groups and lacks the depth of social understanding required to form any meaningful relationships with his peers. He tends to play around other children until they tire of his bossiness and controlling nature at which point he plays alone.

Despite being very verbal, he is showing some signs of speech/language delay. He struggles to ask appropriate questions to deepen his understanding of a situation and gets muddled when trying to get his point across. He often mimics phrases he has heard from adults, which come across as inappropriate or out of context.

He obsessively follows his baby brother around but has no concept of personal space or acceptable touch and struggles to play with him for any period of time.

He carries a high level of anxiety and will become frantic, hyper and act the clown when he is feeling especially out of control and possesses suspected sensory issues – despising certain noises, disliking wearing clothes and rejecting anything even mildly warm (think food, baths, tap water for his toothbrush).

But I must end by stressing that it isn’t all bad. Despite our many difficulties, I am still a hugely proud mum of an extremely special boy.

A boy who can read better than most of his older class mates, construct the most imaginative contraptions out of lego and talk animatedly about them for as long as you will let him. A child who gives the best cuddles, tries his very hardest to do the right thing and loves his baby brother dearly.

And given the struggles that I now see clearly he deals with on a daily basis, he is quite simply one of the bravest and most beautiful boys I know.

xx

--------------------------------------------------------------------------------------------------------------

For more information about PDA, please visit the PDA Society website at www.pdasociety.org.uk, or The PDA Resource

If you click on the links below they will take you back to previous weeks of 'This is Our PDA story' where you can get a flavour for what PDA life is like.















Week 1  


Linking up with the lovely Jenny over at Let's Talk Mommy for Share With Me: 



read more "This Is Our PDA Story (Week 15)"

Saturday, 1 August 2015

X + Y Film Now on DVD (review)

I rarely get to the cinema these days, but made a special effort when the film X + Y came out as I'd heard how good it was going to be. 



Now it's out on DVD - I wouldn't normally review a film on the blog but I thought it may be of interest to readers as the main character is said to have Asperger's Syndrome (a type of Autistic Spectrum Disorder). You can see a clip and read more about the story at www.xplusymovie.com.

Asa Butterfield plays the part of Nathan, a boy who loses his Dad in a car accident at a young age, a short time after receiving the diagnosis of Asperger Syndrome. It's very clear to see how strong the bond between Nathan and his Dad was, and we see his Mum try to replicate that as Nathan grows up. It was very touching to see how much she wanted to help and understand him whilst dealing with her own loss and loneliness. 


Nathan finds a great tutor who inspires him with maths, and he travels to Taipei as part of a school team to take part in a Maths Olympiad. Unsurprisingly, most of the others on the maths team are somewhat quirky alongside their excellence in maths, but it was good to see a variety of characters portrayed and that the film didn't just stick to the stereotypes. The point during a meal when one of the other characters tried to get involved with everyone socially by repeating lines he'd learnt from a favourite film hit home a bit for me though, as I could see our girl doing similar. Bullying is also shown, something which is bound to happen with any group of teenagers as they have a knack of weeding out the ones who fit in the least well.

It's a British film, based on a true story. It focused a lot on social relationships, which is of course one of the biggest areas of difficulty for many autistic adults and children. I hope that plenty of neurotypical people will also watch this, as I think it helps with understanding in a subtle way. The actors were all brilliant, and I was well and truly engrossed which doesn't happen all that often. Go and buy it now, you won't be disappointed!


This film is a 12 and I definitely think you'd want to watch it first as parents before letting children view it, as can be quite emotional and also covers some aspects of self-harm.



Disclosure: I was sent this film on DVD for the purposes of this review, along with some maths equipment and a great book about maths (who knew such a thing existed?!) but all views and opinions are my own.



read more "X + Y Film Now on DVD (review)"

Monday, 27 July 2015

Are Relationships important?

Sophie will do what she is asked to do if she likes someone.

There. That doesn't sound too difficult, does it?!

But wait. There's more. I stopped too soon.

Sophie will do what she is asked to do if she likes someone, sometimes.

What I actually mean is: Sophie will do what she is asked to do, if she likes someone, sometimes, if she is in the right mood.

Scrap that. Sophie will do what she is asked to do, if she likes someone, sometimes, if she is in the right mood, if her day has gone well, if she knows exactly what she needs to do and why, and if she is not too nervous about the outcome or too scared of failing.

That nearly covers it, I think. 

I'm well aware that this statement makes it sound like Sophie does only what Sophie wants to do. That she is just anxious and obstinate. 

I've heard the phrase 'picking and choosing' in relation to Sophie more than once if I'm honest, and similar jibes about my parenting skills are slipped into discussions on occasion. 

I bite my tongue. I don't agree. They don't live with Sophie; how could they possibly understand the workings of such a different, unique mind? I haven't made up the diagnosis of autism, although some people inadvertently seem to suggest I have. 

I'd like to be able to say that I haven't parented either of my children differently, but of course as Sophie's difficulties became apparent, it was clear to me that I needed to parent Sophie in a way that was far removed from 'traditional' or 'standard' parenting. At the same time, I carried on parenting Tilly in that 'traditional' manner. I didn't change my style for Sophie because I fancied trying something new, because I was bored as a parent, or just because I felt like it. I wonder if it has crossed their minds that I'd love to be simply parenting in that traditional manner? Let me be clear; I had to alter my way of thinking and acting in order to accommodate Sophie's needs and in order to keep our family life calm and on track for all of us.

Of course, just like any child, there are things Sophie likes to do (speak Spanish), and things she most definitely doesn't want to do (hang around in assembly). We have to know when it's right to push her boundaries. We also have to appreciate more quickly when we may have made a mistake.


I've been asked recently if Sophie has challenging behaviour. Now there's a million dollar question.

Sophie is rarely violent or abusive, verbally or otherwise. Maybe that is because we use the right strategies to make her comfortable more often than not, and we don't push her too far. I'd still say her behaviour is challenging on a daily basis - more challenging than that of non-autistic children for sure. 

In our heads we have slightly different rules for Sophie than we do for her older sister, and the goal posts can move on a regular basis. We sometimes have to think on our feet. Mostly, we have to plan everything very well in advance. This is of course very difficult for Tilly to understand and accept, but she does a sterling job.

Now though, I must take this right back to the start. 

That certain someone. It has to be the right person. It has to be someone that Sophie has learned to trust or who she instinctively likes. Someone who can be flexible and listen to what she is telling them, verbally or otherwise. Someone who does not give direct instructions and just expect her to follow them. Someone who can phrase a demand to make it seem like a request by offering choices. Someone who does not talk too much or ask too many questions; someone who will give her peace, space and time to calm down once she starts to get upset.

Someone who has time to care.
read more "Are Relationships important?"

Sunday, 26 July 2015

#RaceForLife. Together we are Stronger.

Today I got all emotional as I stood on the start line for our local Race For Life. Despite the relentless rain, the atmosphere was jovial and super friendly, and as I looked around at all the other ladies who had turned up this morning to run or walk 5 or 10k, I felt like I was the only one having to choke back a tear.
The numbers show research has helped immensely; there is still work to do though.
The positivity from all those signed up, and from the spectators, shone through, but just looking at the sheer numbers there definitely struck home what a deadly attacker we have in our midst. So many are affected by cancer, and it's the job of all of us to do what we can to fight it. It didn't feel like I was doing much, but at least I was doing something. It's affected my family of course, just as it has affected most families; we can't just lay down. We have to stand up to it.

I was very pleased to see this sign....
'Roar' by Katy Perry has become the unofficial anthem amongst PDA mums, and I imagine that Kelly Clarkson's 'Stronger' has a similar effect for those battling Cancer. I think we all need an extra bit of motivation from time to time, and music definitely helps with that. What also helps though, as in every walk of life, is money. Money for research, so that we can work out a way to stop this.

At the same time as supporting Cancer Research UK, I'd like to mention the wonderful Macmillan Nurses, who also help so many. Maybe if you have any amount you can give, you could split it between the two charities? 


My link is just one way to send money but it really doesn't matter how it gets there. It's also important to keep talking and sharing.

Those pink dots the other side of the lake were ahead of me, but only just...

#RaceForLife done.

I'm not a runner, but I may* do it again.


(*notice how I am not committing myself there...)
read more "#RaceForLife. Together we are Stronger."