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Friday, 27 February 2015

Are we about to hit School Refusal?

For a certain special event two years ago, I bought the present below for our eldest girl.



I told her that I hoped she would keep these special stones close, as they were all things I wished for her to have in life. At the time I bought them, I also bought the same for Sophie, thinking she would go through the same special event two years later. Well, that hasn't worked out, but I do still hope for the same things in Sophie's life.

Last night at bedtime, Sophie told me 'all the people I like don't like me, and all the people I don't like, like me too much'.

I wasn't too concerned about the second half of this, as I could easily understand where she was coming from, even though her feelings were a little mixed up. She was very poorly with tonsillitis over half term and was off school until Wednesday this week, meaning she hadn't seen any school friends for a week and a half. She was nervous about returning to school and wasn't looking forward to being crowded by her classmates (particularly the boys; there is one who tells her he loves her all the time apparently, but this is no laughing matter. It annoys her immensely). Sensory issues play a big part in this; too many voices asking questions of her and over-excitement in the air are very stressful and cause overload.

We got to the playground this morning and sure enough the lovely girls from her class came dashing over to ask how she was, and if she was better, and to tell her what she had missed. Sophie just buried her head in my coat and refused to talk to them, which of course seems a very rude thing to do. I'd been expecting this and had even tried to talk to her about it at home beforehand so she could try and react appropriately, but that just wasn't possible for her. Her peers have been in class with her since Reception, 4 years now, and they are pretty understanding. Actually, I'm not sure they can or do really understand, but fortunately they seem to not take Sophie's actions personally.

The first half of her expression last night was the first indication we've had that Sophie doesn't feel like she is part of the friendship groups. Up until now, we've not felt that she was aware of her differences, she was more focused on having the control she needs. Whilst autism is not a secret in our house, it's not something we've had chance to discuss directly with Sophie as we've been waiting for the right moment, for when she starts asking her own questions. It'd be a bit heavy to just sit her down and come out with it one morning... 

When we saw the out-of-hours doctor at the weekend, he asked me several leading questions about her refusal to take medicine, meaning I eventually did have to tell him in front of Sophie about her autism, something I was trying to avoid doing as it's not been discussed with her. I thought the diagnosis would be written clearly on any doctor's notes, but apparently being an out-of-hours appointment meant they get no notes... Sophie was drowsy at the time though, and it didn't appear she had heard me. Maybe she did?

At bedtime tonight, Sophie came out with the following, unprompted:

'I don't like school, it's only about reading and writing and I don't like doing those. It's so boring. I don't like learning. I don't like writing no matter what, it's so boring. Nothing at school is fun. Nothing at all is fun.'

I tried to talk to her about this, and explained that we may have to try other ways of learning, and find ways of making it fun, but she said 'there is no way'. I explained how learning was necessary for everybody as we grow up, so that we can hopefully get jobs to earn money to buy the things that make life fun, and her response was 'I don't feel like doing work when I grow up, I don't feel like doing anything. I just want to do what I want to do.'

She had an upset tone when saying all of this, and was getting progressively more worked up about it as we talked, so I couldn't discuss it too much or it would have led to a full-on meltdown.

I know it's difficult to read these words and understand the significance of them when you haven't met Sophie, when you can't hear her speak them for herself. Even when you know that Sophie is diagnosed with autism, it's difficult to grasp the full picture here. This wasn't a petulant 'I don't want to go to school'. This was a cry for help.

As I lay on her bed it felt as if we were at the very start of a long, dark, narrow passageway which meanders on indefinitely to CAMHS (children and adult mental health services). This has been blocked off by a heavy wooden door previously, but right now it feels as if an invisible, cloaked gremlin has just started to creak that door open a tiny bit, beckoning us in.

I'm scared. I've heard from so many other parents of children with special needs of how their children are being brought down by mental health issues; low self-esteem, self-harming, or constantly talking about and then attempting suicide. These parents are trying to reach out for help, but nobody is there. No-one is listening to them; they are being passed around like hot potatoes, rarely making it to the front door of any service and if they do, very little help is offered.

Sophie told me that she hates Golden Time. Friday afternoons, the one time in the week which is supposed to be fun, a reward for the children at the end of their busy week. When asked why, she replied that it was boring because it was just about doing what the teacher wanted, playing her games or watching her DVD choice.

I think we're not far off school refusal, and I'm scared. Being trapped indoors for all of half term and the days after gave me a glimpse of how easily my own independence could be taken away - how selfish of me! I applaud loudly those who choose to home school for their own good intentions, but I applaud even more those who are forced into the situation and try to make the most of it. I can see how easy it would be to be pulled down into a depression; the fear of not doing a good enough job would be a key factor. I wasn't born to be a teacher; I don't know enough myself! Couple that with the fact that I can barely remember what happened last week and I'm thinking it's a real recipe for disaster.

Tonight Sophie has gone to sleep with a tear running down her cheek, grumpy with me for not being able to make school more fun. I told her I'm working on it. We need help though. I feel sad for her, and for me if I'm being honest. I need to dig deep for that steely determination in me, to find an answer that we haven't yet come across. How will we provide our little girl with the education she needs?



Linking up with the lovely Victoria at VeViVos for #PoCoLo, in the hope that somebody, somewhere, has the answer.
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Thursday, 26 February 2015

Mother's Day gifts from Truprint - and free card giveaway!

Mother's Day follows quite closely on the heels of my beautiful Mum's birthday, and this year it's extra lucky that I've found the Truprint website in time as I know just what to order following her special celebration which I've written about recently (look away now, Mum!).



Truprint would like to make lots of mums smile and so they are giving away one million personalised Mother's Day cards (but sssshhh, no need to say you are saving money!). 

There is a wide variety of designs to choose from - some you can drop your own photo into like this:



Or maybe one with words rather than a picture:



The site is easy to navigate and order from; the most difficult bit is making the decision!

To order your free Mother's Day card, please visit www.truprint.co.uk and use the code MUMINAMILLION at checkout to claim your card (*for terms and conditions please see below). Be quick though, last order date is 9th March but if you will have to post it on to a Mother who lives further away then you'll need to factor that in!

I have to admit that I generally still always think of Mother's Day with relation to my own mum; it's not that I forget that I'm a mum now too, but I guess I don't expect to be rewarded for it. It's my job, and I love it! Saying that, there are lots of nice photo gifts on this site which I would of course be delighted to receive..... 

How about some breathtaking wall art? Or a photobook of special moments shared? Maybe a mug, magnets, a keyring or some placemats? It doesn't have to cost a lot - stickers start at just £2.49 and photo posters from £3.99. Check out the great range at www.truprint.co.uk/mday15.








Disclosure: I received a credit for the Truprint site to test it out and order a product.

*Terms & Conditions:  Awards one free 7x5 folded card, Standard P&P charges apply (99p), Ship to recipient not available, complete with envelope, code is one time use only, strictly one code use per household.
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Wednesday, 25 February 2015

This is our PDA story (week 6)

Welcome to week 6 of 'This is our PDA story', where I've been asking other families living with PDA to share their thoughts and experiences.



One of my favourite Facebook pages to follow is Pirates Go To Argos. Below she looks at the main aspect of PDA, anxiety.


Anxiety?
PDA and anxiety have a very close relationship in our house. My son has crippling anxiety and he creates a lot of anxiety.
I love him unconditionally and would never be without him but being his caregiver has at times given me terrible anxiety.


Living with PDA and it being unpredictable can leave you being on high alert at all times.
Imagine you are floating in an ocean and you know that at anytime a dark storm can come. Even on the sunniest of days and swimming in the calmest of waters, experience causes you to not allow yourself to totally relax. You gently tread water, just about keeping your head above it aware that you are helping those you love swim as well as they hold onto you. You have to keep swimming as there are other people holding on and if you go under they will too.


In fact you have been swimming like this for so long that you can't remember what dryland feels like. You used to be jealous of those people who were on dry and, seemingly taking it easy, but now you hardly even see them telling yourself how lucky you are to be in this beautiful sea and just forget about the dark clouds always looming in the background.


Then suddenly without warning a huge wave comes along and engulfs you, sometimes you see it coming and sometimes it arrives with no warning....either way your reaction is the same. Your muscles tense, adrenaline kicks in, you start to shake, your heart beats quicker, your stomach starts to knot, you feel sick, your head starts to spin your breathing becomes shallow and quickens. For a split second you close your eyes in the hope it is not real, but the responses in your body show that it is not 'going to go away' and you use every ounce of strength you have left just to try and resurface above water.
And of course you do, you have others holding onto you and you must resurface with them as well - you have no choice.


But it is exhausting, treading water wears you out, waiting for the storm you know will come is draining, the physical symptoms that occur when the wave hits and the energy to push back up to the surface leaves you feeling as if you can do no more - but that is not an option. This waves come every day, some days have more than other days, but they are always there.


Anxiety and exhaustion can be hidden well, but does not make them any less real - for PDA children and their loved ones it is a part of the package.
This post is not about asking for sympathy, it's about explaining something that can't be seen. Please share and please help more people understand what being a caregiver of a child with special needs can be like xxxx


Linking up with the wonderful Jenny at Let's Talk Mommy:


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Thursday, 19 February 2015

Balloon Time helium kit review

Last weekend we had a very special event to attend.... a 'big' birthday for my dear old spring chicken Mum.


It was lovely to be able to get all her children and grandchildren together again for the weekend - sadly we live quite spread out across the UK so are rarely all together at the same time.

We went back to our home town to help her celebrate, and on the Sunday we had a party lunch in a separate function room in a 'grand' hotel there.

As there were five grandchildren present ranging in age from 6 to 11, I thought it would be a great idea to provide some entertainment in the form of some helium balloons - our youngest girl definitely subscribes to the thought that a party isn't a party without balloons and I'd tend to agree.

Balloon Time helium tanks are a really quick and easy way to bring some fun to a party. The tank is lightweight and portable and the box includes 30 colourful latex balloons and a spool of white ribbon. I picked my kit up in Tesco but they are also available in Asda or online. There's no need to pre-inflate the balloons; it really is quick and easy to do once at your venue.

Below is a short video (one minute long!) which shows you just how easy it is to use this kit:


Here's a photo of all the grandchildren enjoying the balloons together:




A whole table shot:




And Daddy enjoying the balloons all by himself:



My final photo was taken through a slightly mucky window sadly, but it shows just how much fun the balloons provided - they were taken outside for some running in the gardens and received lots of admiring glances!




On the Saturday we all went to get some 'professional' family photos taken in a local studio. I'm hoping they turn out better than my quick snaps, but these ones below will give you an idea of what's to come when we receive the pics (I'm very excited!).







Disclosure: I'm working with BritMums and Balloon Time as part of the "Celebration Club", highlighting inventive and fun ways of using balloons. I was provided with a Balloon Time helium kit and have been compensated for my time. All editorial and opinions are my own. Visit www.balloontime.com for more information and party inspiration. You can also follow on Twitter @BalloonTime.
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Wednesday, 18 February 2015

This is our PDA story (week 5)

Welcome to week 5 of 'This is our PDA story'.

I've been opening my blog up to other families to share their experiences of living with PDA (Pathological Demand Avoidance), and I hope I can continue to share in future weeks. Previous writers have been so overwhelmed by the messages of support, so thank you to everybody who has read and tried to understand.

This week it's the turn of a Mum who also has a young girl with PDA, and who I feel shares my positive outlook. There are huge up and down times for all of us (we often talk about the 'rollercoaster') but it becomes easier to live with when you accept what 'it' is and use the right strategies to help.

*******

I have read many posts about PDA and have read many parents that are at their wits end, but for me I see things differently, it may be unconventional but hey so is PDA! I try and look on the postive side rather than the negative, as many children with PDA already focus on that side too much so why add to the already out- weighed scales?

My daughter showed signs very early on of being "different" she was a very stressed baby, very clingy and barely ate or slept, we went through countless trials and tribulations to stop her suffering and also ease our own. When she was two her intelligence levels were far more advanced than those around her, she knew all the names of the body parts and could say the alphabet forwards and backwards, she could complete her shape sorter accurately in seconds, I could have a full on adult-like conversations with her that would flabbergast my friends. We had many issues that she didn't like such as: crowds, noise, food touching each other, certain clothing was too itchy. We thought she was a gifted child (she still is!) so rather than fight to make her act the norm whatever that is, I'm embraced it, I adapted to her needs, so she never went to bed at 7 pm or 8 pm she got to stay up with us and have more family time, when she was stressed we did creative things, baking , crafting and painting, we built many many dens. We had bad days but they were more outweighed with good.

My daughter Chloe, was so friendly she  loved her friends (maybe a little too much, with all the hugging) at her age it was acceptable though, school showed signs of stress for her, she found it incredibly overwhelming and her behaviour began to change, she would become violent, and upset at school but mostly at home. She refused to do work at school and (of course it was too easy for her as they were doing things she had done since she was two) when we finally got teachers to realise that she needed more help and work, I had decided that maybe she needed a diagnosis (deep down I always knew) I kept a diary, not every day just when something was noteworthy. We were lucky with timing and people to contact, I had a health visitor visit (my last one before she was 5) she saw Chloe and contacted a friend, another health visitor who had a son with aspergers, after witnessing Chloe who was ill that day and stressed and was sorting toys into colour and shape, she gave me a number to ring, we were seen at CAMHS quite quickly and thanks to my notes, and Chloe's behaviour there we got a diagnosis of Autism with traits of PDA at the age of 5. Reading other posts I know I am very lucky to have that. Chloe started getting upset about everything in school, her friends and the politics of friendship, and the school were not that helpful apart from one teaching assistant who actually got it! 

By the time Chloe was 7 we were moving home so we moved schools as Chloe was so un happy, this school actually was very helpful but it just wasn't enough, she had no one-to-one, and it looked like a battle that would of been hard and exhausting for all of us, I grew tired of having to be at the school for over an hour (yes) to get her to go through the doors, to have phone calls, to walk up to the school gates to find a teacher waiting to tell me how she has done not very much work or that she had a bad day and got upset again. It brought tears to my eyes that she was suffering so much. I realised that she needed a safer environment, someone who understood her and take away all the daily demands. That person was me! Thankfully I run a small business from home and had just left my part time job so I could be flexible for her, my husband although not entirely won by the idea, he was supportive. My business will have to change around her needs. But why battle against it? Why do people fight to push a square into a circle? (It will never fit in!) So for us, we have a new way of living, we have had a few wobbles as we've just moved into a flat (no stairs!!!! Horray!) de-registered Chloe from school and starting a new business all of which makes PDA go wild and loopy! But I know these changes are going to help her, support her and make her a happier person and that's all I want from her is to be happy! No other pressure there! She's allowed to fidget and pace, and walk in circles, she's allowed to make more dens and hide, she's allowed to learn the way that makes sense. She is allowed to be her! Xxx


To read more about this condition, please use the menu at the top of my home page, or click on What is PDA?.

For previous guest posts in this series please see Week 1, Week 2, Week 3 and Week 4.


Linking up to the lovely Jenny at Let's Talk Mommy for Share With Me.

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Monday, 16 February 2015

Siblings {February 2015}

Short and sweet this month, for my February Siblings photo:

I snapped this whilst we were inbetween shots at the 'official' photo shoot we went to for my Mum's 70th Birthday this weekend. I'm very excited and can't wait to see the official photos in about a weeks' time.

The girls had lots of fun together and with their cousins this weekend; it was so lovely to see.

I'll have to admit to trying to take a posed photo of the girls on the 10th of this month, but it pretty much ended in tears. Here's our other siblings - our cats Stampy and Lotus - and the image I was trying to recreate with our girls. Let's just say it wasn't a success!!








dear beautiful
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Thursday, 12 February 2015

Book of Life DVD release and Competition details

We didn't have chance to see The Book of Life when it was released at the cinema, so we were delighted to be offered the chance to join in a home viewing party to celebrate its release on DVD on Monday 16th February.

The film is all about three friends (Manolo, Maria and Joachim) who live a town in Mexico called San Angel. I've loved reading the reviews, as apparently it's funny but also tells a tale of how important family is. We are really looking forward to watching it!


You can enter a great competition if you pop over to the website
winwithbookoflife.co.uk before 23:59 on Monday 23rd February. All terms and conditions are on that website.

There's the chance to win a BLU-RAY player, £100 worth of family DVDs AND £100 of Chiquitos restaurant vouchers. You can enter in one of three different ways; by either downloading and completing a colouring sheet, designing a costume like Manolo's or recording a character impression.


We are going to be taking part in a Twitter party from 5pm - 645pm on Monday 16th February; it'd be great if you can join us using the hashtag #BookofLife. Look out for me at @stephc007.



Disclosure: we have been sent this DVD to review and a party pack to play along with at home, but are not receiving any monetary compensation for this post.
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Wednesday, 11 February 2015

This is our PDA story (week 4)

Welcome to week 4 of 'This is our PDA story', where I open my blog up to another family living with PDA (Pathological Demand Avoidance).
There has been much debate about the name given to this particular 'type' of Autistic Spectrum Disorder, and I think it's fair to say no-one involved loves it. Pathological is one of those scary words that conjurs up a bad image, so I'd really love it if every could focus on the Demand Avoidance side of things? In my mind that's not the best description either though; our children are not intentionally avoiding simply because they don't want to, they are avoiding through lack of fear. It has been described much more succinctly as 'can't help won't', meaning they can't help the fact that they won't do something because their anxiety is preventing them.

For more information, please do visit the PDA Society webpage at www.pdasociety.org.uk. There are plenty of great resources including ideas on strategies to use when dealing with this behaviour.

This week's post comes from Dinky's Mum. It details the long process she has had to endure from first referring her daughter and the kinds of attitudes she has faced. This strikes me as a good example of plenty of similar cases I have sadly heard of; parents want the best for their children, but they certainly don't 'invent' their problems or request a 'label' just so they can go through battles like these....  


Guest post- The rollercoaster of Health, Education, Social Care and PDA

It is really hard to explain our journey without a very long and detailed post filled with an ineptitude of epic proportions. So I will bullet point run through- expand on certain points until we get to today (I will probably miss bits out accidentally!)…
·         We started with a lost referral to SaLT at 2 after her 2 year health check indicated delayed speech, which when found, we were told we didn’t really need by playgroup as a year and a bit later dinky is talking in sentences, mostly from tv, but speech is speech right? (I know).
·         The child minder cut dinky loose to (and this is not a joke), keep the autistic child on as it is better experience, and the pair of them together was too difficult. (I lost my job over it)
·         Playgroup say dinky is going backwards and didn’t fill in her EYFS book much November to December because ‘it wouldn’t be fair on her’
·         January our housemate makes Dinky and I homeless to move closer to her dad. We move into a B&B and then a hostel
·         Dinky starts school, first couple of weeks go really well, dinky even goes into the class by herself without me after 4 days!
·         Things start going wrong at school, by October they have called in the play therapist- say behaviour is housing related.
·         I asked for a referral to CAMHS which gets delayed due to admin error, and then was refused, (a GP asked me if I wanted to medicate, and said it wasn’t the answer!)
·         Dinky now refuses to let me leave after phonics mornings, she refuses to do the phonics and spends most of her time in the bathroom opposite the deputies office.
·         Apparently the hiding in the toilets and the hiding in the role play area/tents had become a daily occurrence.
·         January 2013 dinky is put on the SEN register at SA+, and a CAF is put into place- CMAHS refuse again
·         This is the point we entered the parallel universe of the SEN world, where I learn how to talk almost exclusively in abbreviations! But most importantly- I learn about my child. At first it was a mum at the school who brought up autism. I knew little about autism, I admitted I only knew two severely autistic children and the person who had their son assessed for high functioning autism got huffy with me when I said Dinky did some of the things her son did and she said Dinky was not autistic. So I didn’t think it was autism, although I knew very little about it. This mum invited us for dinner and pointed out lots of autistic behaviour. So I read up on it, and sure enough Dinky did seem to meet the criteria, except she wanted friends so was social. I wasn’t sure, it was all new to me.
·         Then… LIGHTBULB! I find out about PDA through mumsnet!
Like many parents before me and many since… I was sat reading a description of Dinky. It was scary how this description matched my girl!
·         So I did a quick test… I phoned my dad and read him the criteria, he said it fit! So the next day I went into the school and met with the SENCO, I read out the symptoms of PDA and she asked if it was a list of dinky’s symptoms for the GP to try camhs for a third time.. I said no, it was an autism spectrum condition called PDA. Talk about backtrack! She went so far back I’m surprised she didn’t turn back time!
·         I still went to the GP and asked for, and got an autism pathway referral to the CDC.
·          That very same afternoon the head teacher and play therapist call me in to the office and tell me that I need to move to a different area in the town as the area the school was in was ‘not a social housing area’ and said that I was not helping Dinky by waiting for a place near this school and that another school (with a bad reputation) would be ‘better at dealing with families like yours’.
To say I took it personally was an understatement.
·         I put in a bid for a place in an area I didn’t want, I got the place and dinky was out of the school within 3 weeks! She had lasted 2 terms in that school, before they wanted to get rid of her.
·         Dinky was awarded DLA
·         Dinky starts special needs club through short breaks
·         The first paediatrician we saw said the school’s forms say she isn’t autistic and she looked at him and gave him a grape ‘autistic children don’t do that’ He also said she met the criteria for PDA, but didn’t know what it was.
·         I went to PALs who got me in touch with the head of paediatrics for our area, she said she expected all Paediatricians to know about PDA and put us on a different caseload
·         School teachers say Dinky is fine, yet don’t allow her on a school trip and exclude her informally. (which I didn’t know was illegal, but I am sure they did!)
·         I warned the school in a TAC meeting that it would all go downhill in year 1 when play based learning stopped and if she didn’t get the right help, Dinky would struggle more.
·         September, new term new teacher- can’t be bothered with dinky, hadn’t read her IEP, the worst possible teacher to give a child suspected of having PDA- very strict.
·         School STILL won’t listen about PDA, they query attachment which is shot down in flames before it gets a chance to fly!
·         We get a family link worker who says it isn’t my parenting!
(however she knew nothing about statements, DLA or anything useful)

·         I was constantly butting heads with the head teacher, the Senco and the integrated services person who was assigned to chair our TAC meetings.
·         Turned down for statutory assessment
·         Dinky was seen by another Paed who said she definitely fit the criteria for PDA, and then Dinky proceeded to have a massive meltdown during the appointment just to prove his point!
·         More arguments with school and dinky is excluded twice.
·         More short breaks say they cant provide support for Dinky
·         Dinky gets a provisional diagnosis of PDA!
·         TAC meeting- integrated services manager says ‘why should the school put in strategies for a provisional diagnosis’
·         School question provisional diagnosis constantly, more exclusions.
·         I get onto strategic commissioning manager for SEND in our council who send in Social communications team (aka autism outreach)
·         Statutory assessment appeal not needed, provision planning meeting overturns refusal
·         Another paed appointment, he says definitely PDA, cant diagnose fully without SaLT
·         Social communications team say definitely looks like ASD, need PDA strategies… (Yes I did tell them that I was right!)
·         Ed psych also says definitely autistic with PDA, told me to look at special schools.
·         School keep excluding and want Dinky out. 2 terms the school lasted although she managed another half term of being on reduced timetable or excluded
·         OT say sensory integration difficulties.
·         Social care won’t touch us, because dinky can ‘walk talk and feed herself’, and my parenting isn’t the problem
(I’m starting to be taken seriously! Not by school, but by everyone else!)
·         School call in social services over some half baked story of over sexualised behaviour.
·         Social worker is awesome! Really fought for Dinky.
·         The social services report is illuminating, half the professionals didn’t trust the school, and the school had done all they could to discredit me, calling me strange and saying my mental health was a barrier to working together- although it was well documented that the only barriers to helping Dinky was the head teacher!
·         Dinky turns 6 and I had enough, the school were constantly refusing to use PDA/ ASD strategies, they refused to listen to advice from professionals, they loathed to admit I was right- so after 9 exclusions in 10 school weeks, I removed Dinky from education while her statement was being sorted.
·         We get visits from the social communication clinic SaLT whose report will form part of the ASD assessment.
·         More short breaks say they cant provide a worker for dinky ‘too complex’
·         Proposed statement is issued and it is all BESD related, like the head teacher wrote it.
·         Dinky gets a diagnosis of ASD-PDA, Sensory integration difficulties (SPD), significant attention, hyperactivity, impulsivity and concentration difficulties and sleep difficulties. This is 4 months after taking her out of school.
·         I took great pleasure in sending dinky’s diagnosis to both schools!
·         Dinky has a proper OT assessment.
·         Dinky’s case is the case which created a PDA diagnostic pathway for our CDC
·         New social worker gets us 9 hours a week respite.
·         We get final statement- 48 weeks after applying! But no school named.
·         They try and tell me a BESD school is becoming autism friendly, but the school was dire, teacher hadn’t a clue what PDA was and Dinky was supposed to start in a couple of days. The sensory room was two lava lamps and an Argos novelty bubble tube. It was unsafe as had gaps in the hedge.
·         Still no school, constantly onto the SEN team- go visit a wonderful special school.
·         Dinky does a 3 day familiarisation
·         Last short break provider says they also cant meet dinky’s complex needs.
·         Dinky’s case (and another parent of a child with ASD who was also failed spectacularly for having an autistic girl), leads to a new team in children’s social care to bridge the gap between short breaks and learning disability team.
·         Dinky is awarded a personal budget for a 1:1 respite, sensory equipment and accessing the community.
·         11 months after I took her out of school…. Dinky starts at a special school in the next county with a 1:1 in a class of 5. She has on site OT and SaLT, plus other therapies.

That brings us up to 2 weeks ago! It has been a rollercoaster to put it simply. I have not stopped fighting for Dinky, I refused to let ignorance from professionals stop dinky getting the support she needs.


Dinky is awesome. Since finding out about PDA, I have done my best to reduce demands and introduce visuals to make it easier for Dinky (I have small Velcro backed laminated pictures everywhere!!!). This, along with 11 months out of education, has led to a calmer, happier and thriving child. We had great fun making use of her merlin pass for the 11 months! It was so nice to do things together. However it wasn’t without its difficulties, having an autistic child with sensory needs and a resistance to everyday demands (which is putting it lightly), isn’t exactly a walk in the park… as that would actually mean Dinky walking! Still, I would do it all over again!
I couldn’t have imagined being where we are now, not when she first went on the SEN register while we were in the hostel. Not even when I first took her out of school nearly a year ago.
Now she is at an amazing school (with an eye watering annual fee!), and finally, I feel things are working out for us.




I hope this gives others the hope that when things seem dire, it might still work out. It did for us! 


Dinky's Mum also writes a blog about life with her daughter with PDA; you can find that over at Dinky and Me.

Please do like or comment to show you care; the support means so much and can carry someone through a difficult day.

For previous weeks and different outlooks, please read Week 1Week 2 and Week 3.


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


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Tuesday, 10 February 2015

Talking, Autism and Sensory Processing Disorder

Do you prefer to be on your own?

I can't believe that anyone born as a human being really wants to be left all on their own. What we're anxious about is that we're causing trouble for the rest of you, or even getting on your nerves. This is why it's hard for us to stay around other people.
The truth is, we'd love to be with other people. But because things never, ever go right, we end up getting used to being alone. Whenever I overhear someone remark how much I prefer being on my own, it makes me feel desperately lonely. It's as if they're deliberately giving me the cold shoulder.


This is an excerpt from the book 'The Reason I Jump', which was written by a 13 year old Japanese boy diagnosed with autism who has speech difficulty. He had help 'typing' this book; he pointed to letters on a cardboard alphabet grid to determine the words. He was asked questions about what it was like for him to have autism. I've not read the book myself yet, though it is now on order, but I came across these words in a brilliant article in the Guardian entitled David Mitchell: Learning to live with My Son's Autism.

This question and answer stood out for me in particular because I can see this so clearly as being relevant for our youngest girl. Today she said 'I like company. You know, just the being with someone. Not the talking kind.'

She often tells us she wants company, and yet her actions often shun the company she requests; she can seem almost anti-social when screaming 'go away!' and 'leave me alone' at those less used to being around her.

It is common for people to want to care, and to help others. As a society, I think we are programmed to show we care by either deciding for others what we can do for them, or by asking what others want, verbally or otherwise. That sounds nice, and reasonable, doesn't it? For many people it doesn't seem to come easily to wait, and let the other person express what they want or what will help most in their own good time. Particularly if the other person struggles with communication in any way. It's a natural instinct for many I think, to keep talking, offering different solutions, or just trying to 'chat' to offer comfort.

For those like our girl though, who need time to process verbal instructions, more talking is definitely not a good thing. I wince and feel bad of course when I hear her being rude to others, and screaming at them to go away, but I do at least understand why she is doing it. 

Sensory Processing Disorder is a real 'thing' and there is more information about it on the Bibic website. It can be treated through regular specific exercises, although that depends of course on finding out exactly what the issues are initially.

The truth is that our youngest faces a lot of sensory issues which are not immediately obvious to others. It's taken me years to make sense of some of them, whilst others (such as difficulties with certain clothing - her refusal to wear socks, her preference for soft, jersey, non-fitted dresses and short sleeves) were obvious when they started at a young age.


Recently I collected her from school and asked her a simple question along the lines of 'have you had a good day?'. Her response was a slightly agitated and rushed 'errrr, don't worry about it'. When I glanced at her, I immediately realised why - she was actually trying to listen to the music in the car, and the words of the song. So my questioning was interrupting her train of thought and she was trying to ask me politely to be quiet.

From a very young age she has dictated what sounds we have in the car - it is generally the same number song from a particular CD played over and over, so that she can familiarise herself with it. Often it's just at the point when all the other car occupants are at breaking point and have gone from loving to hating that particular song, that she will manage to choose a new one to become fixated on. If we try and play music that she doesn't like, or the radio with general talking, we can see it's almost painful to her. We've been extremely lucky that she did take a liking to One Direction and other current pop music, as this has meant our eldest is happy too!

I think we are programmed to 'make conversation' and chat from a very early age, and obviously this is necessary to develop language skills, which is where the rub comes in for us particularly. Constant talking to our youngest is like those nails scraping down a blackboard for her, and at some point you have to question how much it is teaching her if she is desperately trying to switch off anyway. So these days, on a car journey for example, I let her have her choice of music - if it's been an overloaded kind of day, or we are on a long journey, then she often chooses no music to avoid it making her feel more poorly. I don't chatter and make polite conversation, I don't point out interesting sights along the way, I don't ask how her day has been - all things that I most definitely would do if it was just our eldest in the car.

Going to the pantomime is not something we could do when she was younger (we tried; she spent a lot of time in the entrance hall) but we've worked on it so it has now become a great family tradition. It would have been easier to just not go, but we felt it was something we'd like to do as a family, for our eldest girl's benefit too. The enjoyment is clear to see, with huge laughs for us all together, but we are always very aware of how difficult the noise levels, and the shouting out and audience participation are for our youngest. Sometimes we use noise cancelling headphones to help her cope, sometimes she is on top form and can just manage it herself, other times we know we will need to leave during the performance so she can take a break from it. It's not easy or straightforward.

She once came out of school and told me that she felt like saying 'blah-blah-blah' back to the teacher when she talked. She explained it was because that was what all the noise in class constantly sounded like to her as it entered her ears. She often tells me that the children in class are too chatty (though the irony that she can make the most noise is definitely lost on her, in typical PDA fashion) and that everything was too noisy. From a young age she would put hands on ears to block out the noise, but as she's got older she often uses a coping mechanism of trying to 'switch off' rather than do the hands action. Fingers in ears does still happen though, and some days are worse than others.

I think she is being literally bombarded by different sensory experiences every day, whether that's noise, or smell, or visually. She just has a totally different threshold for these to many of us, and personally I can't imagine how difficult that makes life for her. Hopefully we're not too far away from her being able to express that for herself, as that may lead to greater understanding all around. 

In the meantime, of course I don't 'let her get away' with being rude or screaming at people. It may seem like that sometimes, but I've learned, after seven years of managing this behaviour, that there is no point 'telling her off' at the time it happens. Exactly at that time is when she needs the least amount of verbal input; she needs quiet and time to process. I do always go back to her at a later time or date to explain why her actions are not acceptable, and we talk it through together. I appreciate that because the original 'victim' is not always around to see that discussion, they may get the idea that I'm not being strict enough, or not teaching consequences.

My girl learns differently to a typically developing child; it is not her fault or mine. We manage this as best as we can together, with years of practice behind us now. The discussions may not always prevent her from getting upset again, but we have seen improvements in behaviour. It just doesn't happen as instantly as it would for our eldest girl. This is part and parcel of living with autism.
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