All cats have asperger syndrome

Wow! That's my reaction to this amazing little book.

If there was a checklist for a perfect book for my daughter, 8, it would read something like this:

1. Cute cover
2. Cute, fluffy, cuddly animals inside.
3. Not too many words.
4. Means something to me or makes me feel better.
5. Cute pictures.

Well, this book ticks all of these boxes and then some.

I love books, I love how they can help and inform people without being forceful, overbearing or being misunderstood. They do not require demands, they do not chase you or contradict you. They can bring about a full range of emotions in any reader, no matter their age.

My daughter has felt different for some time. She has verbalised this to us, and we have tried our best to help her, as you will know if you have been reading these posts so far. No matter how much we reassure her that she is not weird, she is different in a good way and to embrace this as she is amazing, I think it means more when it is in print than when it comes from your Mum.

We read through every statement before giving it to her today, Every single page means so much and made us instantly think of her.

When she got home from the care farm we showed her the book and the smile that beamed across her face said it all. She loved the pictures inside but more than that she recognised herself throughout the book. She was able to see that she cannot be the only one, because someone else wrote this little book.

If you have a child with aspergers syndrome, or high  functioning autism as it is now diagnosed in the UK, I strongly recommend this book. It will help your child not to feel so alone, is not a self help type book, but a pretty and approachable book with a neutral attraction and cuteness factor.

The Book People

As many home educators will appreciate, I have a slight obsession with books....and stationery. We used to have a fantastic free book shop close to our home until our move up here- it was linked to the local tip, so any books thrown for general waste and recycling that were clean enough were crated and taken to the free book shop, where customers could choose three each per day they visited. With five of us I am sure you can imagine how many we accumulated.

When we did move, I took a lot of our lesser accessed books back to the free book shop, gave some to friends and sold a few, but many of them were too difficult to part with so simply had to come with us. Then we reached the milestone of living here for a year, the ideal opportunity to assess what we really use and need- more books have had to go. I refuse to throw them out, so they have gone to charity or been sold as we sadly don't have such a free book shop near us anymore.

Now we are down from three overloaded book shelves to one fully stacked bookshelf, one part full of books and miscellany and one with photo albums (another item I can't part with). Our needs as a family have evolved and so our resources need to follow suit to remain appropriate and suitable. My go to place is the book people website (www.thebookpeople.co.uk). I love the smells and feel of old books, but for the children and their sensory needs, they prefer new books that arrive in plastic and cardboard boxes. Their excitement begins with the knock on the door as the courier arrives to deliver the box emblazened with 'The Book People'. They know the books within will be interesting and different to your average textbooks. Generally there will be atleast one book suitable for each of my children in an order - deliberately- and I try to mix up the topics of the books.

I love to read books myself too, but barely have the time to do so these days- when i finally get time to myself I am too tired to read. A familiar story to you I am sure.

I have used this same website to send seasonal gifts to family who live hundreds of miles away too.

Today, only one of my ordered books arrived- the rest are in a separate box which should arrive tomorrow they tell me- but it is this book I wanted to tell you about anyway- which is handy.

image from ww.thebookpeople.co.uk via google images search

HELP YOUR KIDS WITH GROWING UP- A NO-NONSENSE GUIDE TO PUBERTY AND ADOLESCENCE by Robert Winston, published by DK.
I generally find any book published by DK excellent. I remember the eye witness guides they used to produce, and of course the How it Works book too.
This particular book caught my eye because of the author too. Of course the topic was what I was looking for too.
With a son who is turning twelve soon, a daughter who is 8 as well as my youngest at age 5, this book will have plenty of use I am sure.
It is split into colour coded sections addressing each aspect of puberty and adolescence. It is not just about physical changes and sex (although they are also included). The parts I need for my children and family are the relationships, achieving potential, healthy mind, digital life, wider world and families sections.
Each section has various parts to it with hints and tips for teens and parents as well as other facts and things to think about.

Perhaps unsurprisingly, my first port of call was p186, Communication skills. There is information on verbal and non verbal communication here, over a succinct double page spread. The graphics depict a mixture of people, the colours and sectioned layout maintain interest and concentration, and the short sentences keep information overload to a minimum. My plan is to read relevant sections, then leave it open in strategic places here so I am not placing any demands on people to read it, but it is available should they wish to. To avoid potentially inappropriate content being accessed at an early age the plan is to use clips on the pages, to keep the desired pages open only.
I have tried similar tactics previously with limited success, but that was through leaving a whole book out for people to access when they felt ready. Of course- said book was squirreled away, not to be seen again (until I cleaned the room top to bottom). Fingers crossed this approach works better.

WhizzPopBang

image from www.whizzpopbang.com via google image search

WhizzPopBang is the title of a science magazine aimed at children. Rather than being a factual magazine, or full of advertisements, it is packed with simple experiments, stories, interesting facts, puzzles and more. 

Reading that I feel as if I am trying to sell it to you, when in fact I have cancelled our subscription and have only one more magazine left to receive. This is not to say we won't re-subscribe again in the future, it is just that our children get fed up of having the same magazines/activities available so we often change over.

This month's magazine is all about water. A fairly simplistic topic you may think, but today alone, my eldest daughter - the only one interested in any formal or led learning of any kind lately- has learnt about air pressure, water tension, steam engines, the molecular structure of water and carried out two experiments with water by herself. She has also entered their competition and completed all the puzzles in the magazine and is half way through the quiz at the end. 

Today's experiments have seen water walking and a normally very nervous 8 year old holding 500ml water upside down in a glass watching in amazement as the paper stays 'stuck' to the glass. 

Not only this, she has also dug out our old How it Works book and learnt- through mammoths- about nuclear power stations, how steam is used in fossil fueled power stations and even watched a TED talk about the boiling river in the Amazon. My youngest watched the TED talk too and was answering questions about the river and volcanoes too. 

There are still a few more things to do in the magazine as well as the rest of the quiz which we will complete as and when she is interested - we are child led most of the time here- and plenty of interesting facts in the How it Works book too.

Each month, the publishers email you with an equipment list for the forth coming issue so you can be prepared before it drops on your doormat. I love this added thought that they give their subscribers as how many times have you been caught out with other magazines or websites that look amazing, but you haven't got and cannot find the needed ingredients or apparatus when your children are still interested? That has not had to happen once with WhizzPopBang thankfully.

I have days when I wish my children were more open to structured learning, learning together and could all access the same topics together, and days when I feel more confident in the knowledge that they bring their own interests to me as their parent, carer and educator, seeking deeper knowledge and understanding, which I can then direct and support. The fact that my daughter didn't need to complete the puzzle today and could answer the clue given boosted my confidence in the way we educate them all.

The magazine is available from here: https://www.whizzpopbang.com/

Best intentions

In our local area, the social services support is pathetic. The end.

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Just kidding- not about the above fact, but obviously that cannot be the end.

(image from image search http://r.search.yahoo.com/_ylt=A2KLj.u.j05aABMAtQ_.3olQ;_ylu=X3oDMTBxNG1oMmE2BHNlYwNmcC1hdHRyaWIEc2xrA3J1cmwEaXQD/RV=2/RE=1515126846/RO=11/RU=http%3a%2f%2fkaycehughes.blogspot.com%2f2011%2f10%2fexhausted.html/RK=2/RS=K1b6jzKFYSLQxinZKoK7n.7jo.k-)

As a full time carer for three children with autism, life can be full on, and days can go by where for one reason or another we cannot leave the house. As parents we absolutely love our children and would not wish them to be different in any way to themselves, but that doesn't mean that it is easy by any means.

At a point of exhaustion last year I sought support from a local group of parents - I had every hope of it not being one of those clicky groups, but sadly my worst fears were proven true at the first signs of having my own mind. I asked for support from the head of social services for disabilities.

Six months later we had a social worker assigned to us (after I chased up this manager again) but her support has been underwhelming. We have had a child in need meeting, where I sat with a few professionals, none of which had actually met all of my children anyway, and listened to them passing the buck- literally in some cases, before arranging another trip out of their offices, sorry, I mean another child in need meeting for a few months time.

I was asked during the assessment prior to this meeting, what my support needs were. I told them as openly as I dared, that having no family and few friends (we are still fairly new to the area and with not being able to go out it is hard to make friends anyway), life is exhausting with no break. I told them that everything is a battle- and I emphasised EVERYTHING with examples such as going to the toilet by myself, cleaning, eating, anyone's personal care, leaving the house, getting dressed.....normal everyday things everyone has to do are so difficult and constant battles here. Everyday.

There were lots of agreeing noises, nods and writing down on a form, followed by a trip upstairs to 'see the children's bedrooms' (I still don't understand why they need to do that every time they come out....we know when the social worker is coming, wouldn't let her in if we didn't anyway, so if the children's bedrooms were not OK (whatever that would be) then they wouldn't see that anyway!). Next I heard was that the only support social services can offer us is, at best, a weekly activity for each child through their short breaks provider. Please someone tell me I am not going crackers here....I have explained that we cannot get out of the house, so their answer is to literally set us up to fail by saying they can offer our children activities out of the house??

Yesterday was the first activity of this new year. It was not arranged through social services as I have not heard back from them yet, but the children get one session a month at the moment- each. I was looking forward to last night as it was the first time we had booked all three children in to the same activity, so it meant my husband and I would actually have two hours together. Alone.

Of course this did not happen. Our two eldest went to the planned session and thoroughly enjoyed themselves, whilst our youngest sat in the van with us, screaming, shouting, kicking, punching and eventually wore herself out and fell asleep.

We do everything we can, all the time, to alleviate any anxiety the children have. We discuss everything, make decisions together, reduce all demands whenever possible, use the Ross Greene explosive child approach to parenting and still when meltdowns happen (usually when we need to go somewhere) none of this helps. Even being able to see the signs and trying to divert/distract/discuss/reassure before it escalates to this extreme is no good in these situations with our children with PDA. Last night came out of nowhere. She was perfectly happy all day, she knew what was coming up all day/evening so it was no surprise to her, but still BANG, meltdown and a half.

This is not the first time our children have been absent from these sessions with no notice, and I am sure that this is noted somewhere being as they are linked to social services, yet the social worker still thinks extra sessions will help us? I have no desire to have these battles, potentially three times a week between the three children, having to either expend so much energy and time convincing them to attend an activity in the first place, for them to change their mind at the last minute, or to cause so much anxiety and stress that they have a meltdown and suffer emotionally as a result. Yet, now I have asked for support, I am very aware that if I turn around to them and explain- again- that I don't think these sessions are going to have a positive effect on any of us in the family, then I will be seen as not engaging with the support and being reluctant to accept support.

Excuse the cynicism here, but it is based on facts and past experiences from both sides of the desk.

Also, I will happily spend all day and night and all my energy supporting, cajoling, encouraging and discussing actvities and opportunities with my children, and do not mind if they change their minds (many times) at any point, even if we have paid for activities, but to have to do this for activities they have not chosen themselves and have no real desire to partake in is my issue.

Amazon echo dot

I have mixed feelings writing this as I have been having serious issues with amazon deliveries of late and am frustrated at their lack of customer care or customer service and the fact their couriers have no culpability or recourse. However, separately from any deliveries, the amazon echo dot has been a wonderful addition to our house over the last year.


(image from argos.co.uk)

The adverts for the echo do not go far enough to show how useful it can be for everyday life in my opinion. If I had seen the adverts and not tried the echo, or researched available skills then I don't believe we would have any here. As it is we have three and are seriously hoping to purchase one more.

There are many different skills available for all ages and they are split into categories in the alexa app and I recommend spending a little time looking through these to find specific skills that you would enjoy. Another useful tick box is the alexa updates by email- usually I don't tick any of these boxes, but the alexa updates are useful. It was through one of these emails we were made aware of the migration of drop in and the calling facility to the UK.

The main reason we got our first alexa echo dot was to reduce the demands in our house that came directly from us. We recognised that having someone or something else that could state the need for action or a task to be completed would be beneficial to us all. We had limited options at the time - there are more available now- and the echo dot was affordable at £45 from either Argos or Amazon at the time (although ironically amazon did not have any in stock when we were ready to make our purchase).

We immediately linked up our google calendars with the echo dot and added daily alarms for screens off, bedtime and reminders for daily tasks such as brushing teeth. The children tried all the fun children orientated skills first- of course- so she can fart, meow and bark, tell knock knock jokes (on par with christmas crackers) and many other perhaps useless things besides. We found skills for daily news updates, weather briefings, daily inspiration, daily facts and more which we used every morning to try and spark conversations about topics other than minecraft and pokemon.
It was no long before we realised the echo dot would be more effective if we had a couple of them- we now have three. We have one in our girls' room, one in our son's room and one in the kitchen. We can call eachother through them- saves calling children for dinner repeatedly, listen to music and radio stations on them, listen to audio books via kindle and audible on them, ask how to spell words, ask random internet search questions (sadly she seems to use wikipedia and bing so this is where I can see a google device being far better) and more.

I always have so many tasks and jobs in my head that I forget half of what I am meant to be doing, so use the echo dot with an app called 'if this then that' which a friend told me about. It means I can leave notes with the echo dot, add items to my tesco shopping basket (be careful to check the basket the day before your delivery to remove any dodgy items), set myself cooking alarms, constantly check the date and time, listen to the news and various radio stations and songs, set reminders for us all for various activities and daily tasks, set alarms and send voice messages to other echo dots here too.

She is very useful for when you can't find a dice anywhere too :)

In the constant effort of engaging the children in any topic other than minecraft, pokemon and now arc survival, we also use the following skill commands:
open stop breathe think - for a bit of time out
open magic door- a lovely story where you make decisions about the direction of the story (great for aiding decisions making skills)
start animal game- think of an animal and she will ask you questions and try to guess the animal (nice addition is that she informs you of any facts you were lacking in too)
launch higher lower game- again useful for decision making and number values
open code word- following the clues can you work out the word alexa is 'thinking' of?
play true or false
open combat and hit the dragon with my sword- another decision making story game
play yes sire- a strategic game which keeps your scores from game to game
open guessing game
open escape the room- I particularly enjoy this game but get frustrated when it repeats chunks of text aking to a call centre worker who has to read out a paragraph in response to a certain phrase
start harry potter quiz
open I'm feeling curious
I'm bored
inspire me
start vocabulary builder
open maths coach
launch mystery castle
play runescape

There have been others we have tried for a while and then left to one side.

I keep a list in the kitchen of the command words for each of the above skills as I cannot remember them all, but the regularly used skills become second nature.

A humerous side to having the echo dot is hearing the children shouting at it when it tells them it is screens off time, or time to have a shower.

From a demand avoidant perspective I cannot recommend them enough. 

**a tip- make sure your 'drop in' is disabled in your alexa settings to prevent other alexa users being able to drop in and speak to you through your alexa remotely- unless you are happy with that**


More marketing type information is available here:
https://www.amazon.co.uk/dp/B01DFKBL68/ref=fs_bis
http://www.argos.co.uk/product/6349693

and there are other personal assistants available which may work better for you, I just urge you to look beyond their limited advertising and consider how useful it can be for a family with PDA, autism or any other needs. (I am still trying to hold my husband from purchasing the smart home technology you can link up to the echo dot!) 

Christmas day

I am writing this a week on from Christmas Eve purely b cause things have now returned to -almost- normal for our household. The decorations are still up (more about that in a bit), we have a new puppy (not for Christmas I must add), we still have our Santa divider plates out, but the levels of anxiety and daily activities are certainly returning to some sense of normality.

This time last week I cannot tell you how careful we had to be here. Expectations were enormous and confused- our eldest decided to announce, to his little sisters that he doesn’t believe in Santa and that he knows mummy and daddy get the presents (my 8 year old LOVES Christmas and Rudolph), the ice and snow had finally cleared from our street so snow dog was no longer in our garden (cue huge upset to the extent that we have one of his frozen ears in a pot in our freezer for our 8 year old to be able to cope with the thaw) and they were all so excited about getting 5e plate and key ready for Father Christmas that our daughters ere trying to get to bed as soon as it got dark, in the hope that would make Christmas sooner!
When it came to bedtime of course things ere totally different. We tried the relaxing bath, book and tucking them into bed....then tried reading more books.....then fun kids radio station via their Echo dot....then resorted to swapping shifts kneeling by 5year olds bed, purely to keep her in it so we could fill their sacks 😴 it was nearly 2am before we managed to get to bed ourselves. A familiar tale No doubt.

Christmas Day itself was helped by us opening one gift on Christmas Eve to relieve some of the wait and anxiety around the secret presents. We also played a family game of escape the room-a boxed game which was very enjoyable and challenging for us all, but we will try to get another one for next year.

We all open our presents in the morning so they don’t have to wait and there are therefore less demands on them. The one expectation we have is for us all to sit at the table for dinner on Christmas Day, so all other demands are removed. We have a (new) pyjama day, build Lego sets, pile up new gifts in the corner because they are new and that is scary, have variations on Christmas dinner ranging from a full dinner to a divider plate containing a small selection of food such as pigs in blankets and potatoes, then burn some brandy and watch TV or whatever they want to do for the rest of the day. We are lucky, in a way, that we don’t have any family that we need to visit or entertain-I remember those days from when I was younger👎🏻 (Of course there are lots of other factors involved in having no family too).

In the evening we had tears and upset at the day being over and the prospect of decorations being taken down soon. My only way through it was to agree on 12th night (ssshhh.....we always keep decorations up until then anyway) and that we would find her a new room decoration to replace the Christmas ones. I do agree with her that the house looks bare for a while after the decorations go down so do have sympathy.

Since then we have been tying to coax the children out for a walk (we managed a woodland walk) and generally out anywhere. Today was lovely because I took my eldest daughter to the care farm to deliver Christmas presents (unfortunately she was unwell before Christmas with her asthma). Her whole being lights up when we go there 😍🐎 we groomed her favourite horse before returning home to play with the puppy

Our son has been away at his biological fathers for a few days, and we know from experience that things have the potential and likelihood of being difficult on his return. He masks his anxieties and difficulties the whole time he is with him behind a ‘little man’/‘good boy’ mask, then explodes when he is home and feels safe again. Thankfully his father only has him for this length of time once a year, but last year we had serious physical assaults from him as he returned home and dropped the mask. This year we are trying to be more prepared. We hope.

I tried to explain to my youngest (5) this evening that it is New Years Eve and therefore tomorrow is a new year....mistake! She did not like that idea at all....obvious really, of course a new year signifies the demand for change as does ‘new’ anything.  Happy New Year everyone :) 

Is she alright??

Glad to be home again doesn't come close to how I feel at the moment. I have met the equivalent of Basil Faulty this morning, without the measuring presence of his precious Sybil!

(image from majorten.com)

If Basil Faulty did Specsavers could be an alternative title for this post.


(image from twitter.com)

My 8 year old daughter hates any sort of medical appointment or machinery/testing/pressure to have to engage etc but unfortunately wears glasses, so has to have annual eye tests. With our move last year and no problems with her eyesight or glasses, we decided to skip one and have been today.

Obviously, when I booked the appointment I made a note that she has autism and selective mutism, therefore the quicker and less faffing about the better. I also prepared her for what would happen so she knew what to expect at every step. She was actually pretty excited to be going there to choose some new glasses today- although I knew that would change when it came to actually being there.

It all went relatively smoothly- the pretest machine was not too bad, the optician included her cuddly toy in the appointment and had lots of patience with her, less talking and more testing, she chose two pairs of glasses and they fitted her- then they needed to measure her pupil distance. Without any explanation the woman who we had been dealing with called a man over (mistake #1), the man sat directly opposite my daughter, lowered his chair to her eye level and asked her to look at the top of the pen whilst he held a plastic ruler to her forehead (mistake #2), then, realising he needed her to stand up he asked her to stand without any explanation (mistake #3) and when she said no he asked me "Is she alright??" to which my response was 'Well, she has autism if that is what you mean? So the pressure of sitting opposite you not knowing what you are doing is a lot' accompanied by internal annoyance and anger that he felt it was OK to ask that infront of her and in such a manner. He watched me explain what he was doing to her and then took my lead and measured her cuddly toy's pupil distance and then hers with her sat on my lap and her chin resting on her cuddly toy.

I find myself so frustrated at the lack of awareness or understanding in some people- people who must encounter many people with autism every day in their work. He was lucky he didn't ask me that question with my son sat there- that would have ended very differently as he would have taken exception to his question without a doubt.

I am wondering whether to set up a form that I can then feedback to places we have visited and had such simple tasks blown up into issues for my children because of the ignorance of the staff there. Nothing malicious or nasty, just helpful hints to help my children and others in the future.

I am also left wondering what their approach to her would have been if she was either with a carer in a uniform, or in a wheelchair.....

We have a week until we need to return to collect her frames and have them adjusted to fit comfortably......then the dentist!!