Tuesday, 31 December 2013

Trials, triumphs and turkeys

It's almost over!

The Christmas period brings so many difficult moments, potential catastrophes, things that need to be actively managed in order to keep everyone calm and happy.  But it's nearly done now.  And I feel so relieved :)

This year, so far, has been our best Christmas ever.  Things have mostly gone smoothly, and that is in no small part to some very detailed thinking and planning. 

I would love to be able to be spontaneous about all this, to just decide at the last minute that we will go and visit someone, or have them here, but having been there and tried that, it just doesn't work for us.

Our Christmas started with a visit to my husbands family, a couple of weeks before the big day.  M had asked if we could arrange to see his cousins on that side, and this was the only way it would work, because most of them would be visiting other sets of Grandparents over Christmas.

We went down for lunch, and it was crazy :) To be fair there were a lot of people in a fairly small house - 9 adults, three little kids, and my four bigger kids.

It was loud, crowded, and chaotic.  J wasn't coping very well, and spent a while with his hands clamped over his ears, before moving to a quieter room.  M disappeared after we ate (with his favourite uncle, N), the little kids went to play upstairs, and things calmed down.

There were issues - M and J got bored  which is never good then later some singing toys came out and that made J uncomfortable again, but all in all things went pretty well.  The younger cousins are getting to the age now where M, J and A know how to play with them, and there were times when we had five children giggling and playing nicely :)

The next point of Christmasy cheer was a visit to Birmingham - to the German market.  We had a good day, visiting the new library (which is awesome! will do some pics in another post)  and we picked up some more presents for cousins.  M, A, my husband and I went on a Ferris wheel - L and J both decided it was too high for them, so they waited in the library.  M was a bit obsessive about it, he wanted to go on, but was scared, but wanted to conquer his fear, but but but . . . eventually we got on.  After the first turn M stopped clinging to me and began to relax.  He said "this isn't so bad.  I'm not scared!"  I was though!  The only reason I went on was because A really really wanted to, and I didn't think my hubby would want to take her.  By the time it was clear Hubby *was* going on, it was far too late for me to back out.  Still, I survived . . .

The next big thing was the Christmas tree.  We all went out to choose it - that's a bit of a family thing now - and we got it upstairs into the living room without too much fuss.  M and J decided on a name for it (just don't ask!) and we decided to let it settle overnight and decorate it in the morning.

After the younger three go to bed L, my hubby and I usually watch TV or play a board game together.  That evening we just sat and watched the kittens.  All three of the kittens seemed to think we had bought them a new toy . . . they climbed the tree, wrestled in it, raced to the top, scratched their claws on it, drank the water, chewed the branches, fell out of it, climbed it some more . . . we were rather worried that the tree would be bare by morning so we moved it to the spare room overnight.

One of the things I have learnt over the years is not to surprise the boys.  We decided that the tree might not make it, and we had nowhere kitten proof to put it that was sensible (we could hide it in the spare room, or block the stairs, or put it in the kitchen making cooking harder . . .)

The next morning we sat everyone down, showed them the pictures of kittens up the tree.  Showed them the needles on the floor.  Told them we thought the kittens could destroy the tree, then asked for ideas.

We all talked it over, and decided we wanted the tree in the living room like it always is.  We made sure the kids knew it might not survive, and decided to give it a try.

The decorations were subtle this year - we deliberately only put on robust baubles, and not too many.  By now most of the baubles are on a shelf near the tree, as the kittens love to play with them, but so far only two have been broken.  The tree has lost a lot more needles than I'd usually expect, but it still looks OK, which is a good thing, and really rather surprising :)

We have a second tree - a hold over from our old house.  It is an artificial half tree designed to hang on the wall.  In our old home we had no space for a big tree, and having this on the wall kept it safe from crawling babies too.  In our new home this one hangs downstairs in the dining room.  The downstairs tree has lots of baubles on - kind of balancing out the upstairs tree :)

We only decorate two rooms - the living room and the dining room - and I think that helps the boys not to get overwhelmed.

After the decorating came visiting my parents on Christmas eve.  Sometimes visiting my folks can be stressful too - my Dad is now wheelchair bound and there isn't a lot of space to move about.  Along side that there are the usual extended family / ASD difficulties to navigate.

We were able to meet up with my big sister and niece, which made things easier - more people to keep the boys occupied, and my sister, A, bought some books with her which the boys enjoyed.

The visit was as good as they get really - a bit boisterous towards the end, but mostly happy and calm.

Unfortunately J got very anxious that evening.  He was worried we had got him the wrong presents.  That things would go badly.  He just couldn't settle.

My husband and I were trying to wrap things (why did we leave it to the last moment?!?) and J kept yo-yoing.  There were tears.  There were long cuddles.  There were deep and meaningful conversations.  Eventually there were shouts and grumps too.  When we finished wrapping things I went up to cuddle him - a last resort so I would get *some* sleep.  He finally settled down at 3 am, and was asleep by half past.

Christmas day was good - everyone got what they wanted and was happy, dinner was on time and cooked properly, relations were phoned and thanks passed around.

Then a boxing day visit to hubby's parents - much smoother as it was just us, them and uncle N - and we were pretty much done :)

The final Christmas visit was my other sisters family visiting us. We've not seen them for a long time, and I was nervous that the crazy boys would be hard work, but again all went well, and everyone was happy :)

This year, more than any previous years, I have put a lot of thought into how we do things. 

Our visits were generally middle of the day ones - no really early starts, and no late evenings.  That helped, because the middle of the day is when we get the most relaxed behaviour out of M and J.

I also planned to keep things short, but with the option of extending things if they were going well.

We did one "thing" per day.  My parents and my in laws live in the same direction from us, it saves a lot of time to go to one, then go on to the other, but that was meaning that the second visit was more stressed for all sorts of reasons.

We made sure the children were not left alone with people they don't know all that well - this one was a hard lesson to learn.  My husband and I (and to a big extent uncle N) can see when the kids are getting stressed, or over excited.  We can help them to step back and calm down (mostly!) As much as they love our children, most of our extended family (on both sides) just don't really understand them or their difficulties, so things can get out of hand very easily and quickly.

Lastly, we took back-up plans :) We made sure we had something for the kids to do if they got bored or wound up, and we used specific activities to help calm things down.

I would love to just turn up at family gatherings and catch up with people I've not seen for ages, but I need to be much more present and conscious that that would allow.  I've learnt (the hard way) that the time to relax is at home where it's just us.  Other places require much more attention and concentration.

By recognising that, and making plans, we survived with just J's Christmas Eve anxieties.  Which is a minor miracle, and a major blessing :)

There is much more to say, but that can wait for another post, or two . . .

Happy New Year :)

Friday, 20 December 2013

Not what I was hoping for

I've been trying to write this post mentally for a while, but I still can't quite get things straight in my head.

Sorry if it's a bit jumbled!

So, on Wednesday J and I went to CAMHs for an appointment with the Neuro developmental team.  We saw Dr Z and V - V was one of the team that did J's group assessments.  We were referred to the team as a result of the group assessment.  Unfortunately my husband couldn't be with us as he had a prior commitment, and rescheduling would have pushed things back by two months at least.

After the group assessments we felt that the team had seen the happy side of J, and a few of his issues, but not "the real J", so this was the opportunity to try and give a better, clearer picture of things.  My husband and I spent some time talking through points I needed to cover, his observations and my own, so that both our perspectives could be heard - I went into the appointment with a long list of difficulties, ready to cover as much as I could.

The appointment didn't go so well.

For the first time at one of these sessions I felt like I wasn't being listened to, I tried to convey how things were, but it just didn't seem to work.  J has a lot of difficult behaviours, a lot of issues, but somehow each time I brought something up it felt like it was glossed over or it turned into me trying to justify why or how this was "worse" than a "normal" 9 year old.

It really didn't help that J was minimising things, saying "I don't do that", or trying to change the subject at various points.  He also got very upset - tearful rather than shouting - and that distracted everyone in the room.  We all tried to get him to go to the playroom, or to look at the fish, but he wanted to stay.  Dr Z was very concerned about J's emotional state - maybe that is why she stopped listening?

We talked through pregnancy / birth / babyhood / toddler years / current issues, then J and I went out to the waiting room and Dr Z and V discussed what they had seen and heard.

We were called back about five minutes later, by which time J was smiling and giggling.  He can be very mercurial - from joy to misery in the blink of an eye.

Whilst they can see some issues, they are unsure of any diagnosis - apparently the clusters of issues are not right for ASD in their eyes.  They want to do an ADOS and then look at all the information they have again, and work out how to proceed.

Apparently the fact that J likes to be tickled makes AS unlikely, and there are other dissenting issues too.

When they said that I was stunned. 

I asked them to ask me about things they had expected to see that they felt were absent - because I'm worried I left out details, it is so hard to cover *everything* in an hour - but they were unwilling to do that. 

I told them that all the follow up reading I had done at the paediatricians suggestion led me to the conclusion that it is an ASD. 

I asked them what else they thought it could be - they were unwilling to give *any* real reply to that.

I told them that I felt unable to help J, and that I was unwilling to go through this process and be left with a negative diagnosis and no help, which they commiserated with and gave non-committal "we'll see what happens after the ADOS" answers to.

Dr Z did say that J's emotional imbalance and anxieties are a concern, so perhaps it's good that he got so upset.  But that is small comfort really. 

So, now, we have ANOTHER wait - probably two or three months - for the ADOS.  We will have to hope that the ADOS is accurate, and gives them the missing pieces, but I'm not convinced it will.  J has done one before, and it's an environment he thrives in - last time it was three adults and him in a quiet dimly lit room, no pressure to engage or finish tasks, and just moving from one thing to another very quickly.  I hope the protocol for a nearly 10 year old is different to that for a 6 year old!

Then, after that?  It depends on how things turn out.  I am firmly convinced J is Autistic - I have read extensively about the difficulties and issues, I've networked with other parents and found so many "yeah, J does that too" moments, spoken to other people who know J and are experienced in the field, and every time the response is "yes."  It seems so self evident!

So, if the ADOS brings clarity, then awesome!  If not, then we need to see what CAMHs suggest next, but I will not go quietly.  If they think "it" is something else, then I will learn about this something else and if it doesn't fit I will fight for the right diagnosis.  If they think there is nothing, then I will fight for another set of observations, a different team to assess him, because the issues are there to be seen, they really are!

A while ago I heard the term "warrior mums" - for those who fight relentlessly on behalf of their children.  Sometimes we need to fight for education, for allowances to be made, for services to be provided, for the right diagnosis.

J needs this, and I will not let him down.

I'm ready to fight.  Hard.

Wednesday, 18 December 2013

Is Santa Autistic?

After an interesting thread on an ASD support site, this sprang to mind . . .

"Is Santa Autistic?"
A little boy cried,
"Of course he isn't"
I quickly replied,
But then I thought a bit more
As I wandered away
Was there anything in it?
Could there be more to say?
"He's making a list,
He's checking it twice"
So the old man is thorough,
That's really quite nice. . .
But the next bit's a worry,
Those things on the list
What about "sometimes" or "Sorry"
All those "in between" bits?
The red suit?  That's an issue,
The same suit every year?
repetitive, compulsive . . .
Something sensory here?
Avoiding other people,
That's a red flag for sure,
Climbing down the chimney?
Can't he just use the door?
And always, yes always
We hear "Ho ho ho"
Maybe Santa's non-verbal?
I really don't know . . .
So perhaps he was right,
That inquisitive young boy
Maybe Santa's autistic,
but he brings us great joy

By me, Jenn Impey, 18/12/2013

Sunday, 15 December 2013

Christmas treats

Each year at Christmas time we, as a family, make something for the adults in our children's lives. 

There are so many reasons for this - firstly and most importantly we want the gifts to mean something to the children - for the gift to be more than a random box of stuff that they feel no connection to.  When we make things for people we spend something irreplaceable - our time.  We take time to work out what to make, all four children are involved, and we talk about who we are giving the gift to, and why.

I hope that the gifts mean something to those who receive them too - for a long time most of the adults in our extended family have had far more disposable income than us.  If they especially wanted something then it's generally not an issue for them to get it.  Which leaves a dilemma, really, when you prefer to give meaningful gifts.  So we found an answer :)

So far we have made, to name a few ; personalised coasters, Christmas tree ornaments, photo frames, fudge, biscuits, Christmas cake, cinder toffee and hot chocolate mix.

Each year we have fun, make memories and make a mess :)

This year we are seeing the two sets of family at different times, so we made one set of gifts this week, and gave them to Grandparents, Aunts and Uncles on Saturday.

Most people were given Rocky road - based on this recipe. We tweaked it a bit after the test batch (yum!) We used 400g of dark chocolate, and 180 g of biscuits (instead of 300g / 200g respectively) ,and when the recipe calls for some chocolate mix to be reserved and poured over the rest, we kept back 200 ml (vs 125 ml)  Oh, and the kids wanted to sprinkle some marshmallows on top as well as mixing them in.  But yeah, it was that recipe, sort of . . .

Given how nice it is, Rocky road is *really* easy to make.  Melt butter, dark chocolate and golden syrup until it is properly mixed. Take a small amount of this mix out and *keep it warm*.  Crush some biscuits until you have small chunks and crumbs, then stir those into the mix.  Stir in some marshmallows.  Pour into a chillable tray, pour over the mixture you reserved.  Chill, then chop, then watch as it disappears*really* fast!

As we were going to make two batches, I divided the kids into pairs, just to make it a bit less crazy.  Each pair brought their own frictions - L and J worked well together, eventually, but L was reluctant to let J do anything hot or spillable . . . M and A worked better, but M wanted to race and compare all the time.  A just more or less ignored his suggestions and did her own thing :)

So, pictures!
 A's rocky road, ready to go in the fridge.

M's at the same stage.

J's on a plate, the spare bits :)
L's boxed up almost ready to go.
Being Christmas, we did decorate the boxes, maybe just a tad more than is tasteful . . . so no pics of those!
The children's favourite uncle - Uncle N - doesn't eat chocolate, so we had to make something different for him.  We decided on some nut brittle - recipe here.
This was another really easy recipe to make, but the mixture gets very hot, so you need to take serious care.
Basically, you heat water, sugar and golden syrup (in place of the corn syrup listed) until it is *really* hot.  You can test it is the right heat by dripping a tiny amount into some very cold water, if it solidifies but is squishy it's ready.  Next mix in the butter and nuts. Cook for a bit longer - until the syrup (when dropped in cold water) makes brittle strings and a hard ball.  Then mix in the vanilla and baking soda - be warned it'll foam up!  Then pour it out, onto a greased tray, and chill.
We tweaked the method a tiny bit - we lined the tray, to make it easier to get the brittle out :) 
I mistakenly stored the baking tray in the fridge overnight - not in a sealed container - and the brittle went a bit tacky and not-so-nice to touch.  I panicked a bit then :( but popped it back in the oven at gas mark 1, hoping it would dry out and crisp up a bit.  As it happens that was a really good move :)  Half an hour later the brittle was soft again, but had gone clearer and settled to a more even layer. A little later I remembered to mark where I wanted to break the sheet, and when I came to break it up, it was so easy :) Once it had cooled completely the brittle was smooth, and not at all sticky - much better than the first time even, so a fortuitous accident :)
Again with the pictures - not so many, because most of it was eaten!

We used cashew nuts, but you can use any nuts :)
As ever, lots of mess, lots of fun, and gifts made with love and care - a perfect Christmas really :)

It finaly happened . . .

On Friday my husband and I were invited to CAMHS for the follow up appointment after J's group assessment sessions.  This was a talk through of the report - allowing us to ask for more detail or explanations where necessary - and a discussion of what next.

The appointment was very quick - largely because there was no need for any "do you know why you are here" preamble, or much discussion of the next step because we are - as the two professionals put it - old hands at this now.

I feel a little deflated at what happened next. 

I have always worried about direct observations, what will happen if the child is having a good day?  Or if none of their particular buttons are pushed?  Or if they are in an environment in which they thrive and are happy?  Well, it seems that Mr J *was* happy, and chilled, and enjoyed the sessions.  Whilst a lot of things were spotted - sensory seeking, needing to move all the time, rushing through tasks, poor attention span, unable to sustain social interaction - a lot of things were not.

I can't blame the staff at the assessment sessions, something like 80% of the time J is happy, and whilst he still has issues then it's the times he looses it that are the key to understanding him.  If he didn't loose it during any of the sessions then it cannot be observed.

I just wish he had shown them a little more of his stressed side.

So, next is the referral to the Neuro developmental psychology team.  But we already knew that!  In a bit of stunning efficiency we got the appointment *before* we were told about the referral.  So on Wednesday J and I get to try and cover the other 20% of him - all the stress and unhappiness that the group assessment team didn't see.  That'll be fun . . .

I'm glad that there is plenty of opportunity for us, as parents, to give our observations, our experiences, and to have that recorded on the file.  With the appointment so close to the last one it sort of feels like a rebuttal, but it isn't really, more of an addendum.

Just hope I managed to cover enough, give them enough insight, and help make the picture clearer and more complete.

Wednesday, 11 December 2013

Autonomy, Unschooling, trust, critical thinking and ranting teenagers

Take this as fair warning - this post may well turn into a wee bit of a rant. 

If you are on many home ed Facebook groups then I doubt that you can have missed the Daily Mail article about unschooling that has just been published.

It's not a bad article, in the main, but the concept of unschooling is never going to be an easy one to convey to a hostile journalist.  I felt that, really, if you already know about unschooling then the article reaffirms it as a good choice, if you don't like the idea or have never heard of unschooling it looks like lazy or neglectful parenting and no brief piece of writing can really fix that.

The unschooling approach is, after all, basically, counter to all we are told by the mainstream of society. 

For most people children are viewed as a canvas for their parents and school to paint on.  From the time babies are born we are told they need to be "trained" - how many of us have been told that unless we start sleep training, feeding on a schedule, imposing OUR will then the little ones will be running the show?  We have shelves full of baby training and toddler taming manuals, and the whole of a child's life - if the "normal" route is followed - is run by others, for the convenience of others, and those others are *always* the adults.

Unschooling, on the other hand, is about trust.  Trusting a child to find their way, and supporting them as they grow.  In the UK I think the terms "Autonomous learning" and "Unschooling" are almost interchangeable.  The idea is that learning is best done when a child is intrinsically motivated, not manipulated or cajoled, and from my experience that seems to be true.

Where autonomy and unschooling diverge is that a child may autonomously choose to do "schooly" things - like workbooks - but I don't think that would happen in an Unschooling household.

Now, in our house we have learnt in many different ways - we have times when we are very bookish, and A in particular loves workbooks, and other times where we are very autonomous.  I am unconvinced that unschooling could work for several of our children - M is very keen to avoid challenging himself, possibly due to his high anxiety levels, and L found reading so hard work due to his dyslexia I don't know if he would have persevered without encouragement - but J has shown me that it works well for him - he has so much mathematical knowledge that hasn't come from the work we have done together, and he often asks about things at random times and shows me he is thinking about a lot more than I realise.  So I think this is a case of different strokes for different folks, and on the whole I trust parents to do their best for their children.

But to get back to the article, in many ways it annoyed me - but more than anything else the quotes from "experts" rankled.

To start with, the two experts quoted - Dr Kevin Stannard, of the Girls’ Day School Trust and Julia Harrington, headmistress of Queen Anne's School in Caversham - are clearly what would be termed "hostile witnesses". They are both representatives of school based education, and as such the system they are "experts" on is based on a huge lack of trust - both of parents and of their children. Within the school system the voice of parents is ignored, and the idea of allowing a child to choose what they learn is anathema.  If these two "experts" had given positive reactions, they would have been acknowledging that the school system is not the only way, and ultimately their livelihoods depend on parents not thinking too hard about whether school works or not.  It is rather like asking a butcher or a pig farmer if (s)he thinks vegetarianism is a good idea . . .

Dr Stannard said (amongst other things)
"Part of a rounded education, for example, is the ability to develop ‘critical thinking’ and to question assumptions you have grown up with, which can only truly happen outside of the home environment."

This I *really* take issue with.  I think it goes straight back to this whole idea that society seems to have, that as a parent my job is to mould my children like lumps of clay - turn them into just what society wants and nothing else.  In our house this couldn't be further from the truth!  From the outset I have encouraged my children to think about things - I don't want blind obedience from them, because I know I am fallible and may not have thought about something that occurs to them.  When my children are asked to do something, if they refuse and explain why we talk it through (unless it's an urgent thing and there just isn't time.) I don't always agree with their point of view, but I do try to listen to it and think about it.  We do a lot of learning by talking - probably because that is the way L learns best - so we often talk about an idea and discuss each others opinions of things.

In none of the children is this more evident than L - my very own ranting teen :) - For example whereas I go to Church, he is a staunch atheist.  We have talked through both my beliefs and those of other religions - with no intention of convincing or converting him - and both of us understand the others point of view, and respect our differences.  L has a lot of strong views on things - from the conflicts in Syria, Egypt and Palestine / Israel - to space exploration, medical science, poverty and politics.  Not all of his views are logical, most of them are very different to my views, or those of his father, some are very emotional responses to news reports, others rather ill-informed knee jerk reactions to headlines, but we talk them through, I point him towards more information if he needs it, and quite often he does the same for me.

He may be only 14 (and a big bit) but he is very capable of critical thought and discussion, without ever having been to school . . .

Dr Stannard also said
'It is also much easier to learn skills like ‘collaboration’ when you are actually working alongside a group of classmates each day.'

Which gives lie to his impression of home education, or unschooling, as a solitary pursuit.  So many of the people invited to comment on the lives of home educators have no idea that there is a community out there waiting.  Fully formed, welcoming, and actively socialising.  Collaboration comes when you have a group of people working towards a common goal - and that is easy to do when you move outside the prescriptive, restrictive cage of school and into the wide expanse of freedom in the real world.  If Dr Stannard has no idea how home educated children socialise then how can his views on any other aspect of home education be trusted?

The other "expert" Julia Harrington, a Headmistress, said
'Research shows that a teenager’s brain demands interaction with other teenagers and will seek it out if it is not there.  In the age of information overload, young people need to know how to filter and show discernment in their processing of information, and it is very difficult to develop this sort of mind-set in a vacuum.'

Again showing the same misunderstanding.  Home education of any sort does not mean social isolation, or growing up in a vacuum!

I wish that the journalist had sought out some experts on education as a whole, not just teachers - someone from the Institute of Education, or one of the various researchers that have published work comparing family based education and school based education, or even some of the hundreds of former teachers who now home educate their own children . . .

Monday, 9 December 2013

Rat-a-tat-cat, review and other stuff. . .

Whilst we were in Leisure games last week A bought herself two new games. 

It was only after a long convoluted discussion that she didn't buy more dice - true gamer-chick there ;)

This afternoon the kittens were chasing a large D20 around the living room, so J decided even the pets here are gamers . . .

The first game A bought was Rat-a-tat-cat - made by Gamewrights, a publisher we know and trust :)

The game is a turn based card game, but it has some interesting twists to the usual rules.

Cards are numbered zero to nine, with cats for the numbers up to five, and rats from then on.  The pictures are well drawn, and have a nice sense of humour to them.  The aim of the game is to get the lowest score.

You start with four cards face down in front of each player, the rest of the deck is the draw pile, but the top card is flipped to begin the discard pile.

At the start of the game you may look at the two outer cards (number one and four in front of you) but NOT the other two.  Unless you get a special card later on you may not look at these cards again.  For younger players the game can be played with these outlying cards face up.

On your turn you may either take the top discard card, and switch it with one of your cards (face downs stay face down on the table) OR draw the top card from the draw pile, show it to your opponent(s) and decide whether to play it or not.  It may be a numbered card (switch with one of your face down cards) or one of three "Specials" - these are Swap (swap one of your cards with an opponents, you may not look at the cards you exchange)Draw two (draw another card, decide if you want to play it, if not discard it and draw another) or Peek (look at one of your own face down cards.) You always have the choice of playing or discarding it, but specials on the discard pile do not have their special powers intact.

The round continues until one player knocks on the table and declares "Rat-a-tat-cat" (when they are satisfied with their score), at which point the opponents get one last turn and then the scores are worked out.

Scoring is easy - add up the cards in front of you.  If you have a special it is discarded and a random card drawn to replace it.

The game is played over an agreed number of rounds, we do five, which allows everyone to get the hang of what they are meant to be doing.

We like the game, it encourages a bit of maths, some strategy, some watching of opponents, and plays quickly.  A - at 7 - is fully able to understand the rules, J - 9 - enjoys the game too.  I suspect that M would enjoy it as a way to connect with younger children, but at 11 he is a little old for it really.

Saturday, 7 December 2013

Ticket to ride - review and ramblings :)

A week ago we ended up in one of our favourite places in the world.  The inimitable Leisure Games, an Aladdin's cave of wonderfully obscure board games, innovative  European games, Role playing games, and so much more.  My kids love it there, all of them couldn't wait to spend their pocket money - which is often hoarded for such trips.  The staff are awesome, and good for advice, even the other customers are pretty cool - with one random dude offering A advice when she couldn't decide between two games.  And the dude was right - the one she picked is *very* much A's cup of tea :)

Amongst other games we finally picked up a copy of Ticket to ride - hubby has had the app on his tablet for ages, and lots of friends have raved about it, so I kinda feel we're a bit late to this particular party.

The game is pretty simple in it's mechanics, by collecting different coloured cards you are able to claim various rail routes between American cities, earning points as you go.

Because each turn you only get to do one of the various actions turns move quickly and it keeps everyone engaged really well. 

To start the game each player is dealt three "Quest" cards, which are scored by linking two cities in a continuous route, the more connections you need to make the higher the score.  These cards are hidden, and not revealed to other players until the end of the game.  Any quest you haven't completed deducts from your score . . . Each player has to keep at least two of the initial cards dealt to them, so there is some wiggle room in deciding what you will do.

You are also dealt four carriage cards, these are what you have to collect to claim routes.

Five further carriage cards are then placed face up beside the draw pile, and the remaining quest cards.

During your turn you can either :
    1. Take two face up carriage cards (except jokers)
    2. Take one face up Joker
    3. Take two carriage cards from the draw pile
    4. Take one face up carriage card and one from the draw pile
    5. Claim a route
    6. Take a new quest (draw three, keep at least one)
There is a mixture of routes on the board - some need specific colour cards, others are grey and can be claimed with any colour, they are between one and six carriages long (requiring one - six matching cards to claim, and having the claiming players train carriages placed along the route.) Play continues until one player is down to two carriages to place on the board, and then everyone gets one last turn.

We have played in various combinations of people now, and all of the family enjoy the game - J plays fairly randomly with not much strategy, M seems to be thinking several turns ahead.

It works well on an adult basis - My husband, L and I have played and all enjoyed it - we were a bit more strategic, and a bit more competitive than when we played with the younger ones ;)

A is still a little young to play alone, but I think that once she is familiar with the game she will be able to play independently too.

There is subtle learning going on - as with games like Risk there is a degree of learning where the places named are, but there is also a lot of quick thinking required.  The turns move fast, and often the other players claim routes you need, so it is helping M and J learn to look for alternatives before giving up on a quest.  There is also a need to learn when to sit back and gather resources, and when to claim routes and make the best of what you can do. 

All told this was a good addition to our games shelves, and I can see it getting a lot of use.

Tuesday, 3 December 2013


Sometimes I wonder how other families eat meals.  You know, neuro typical families . . .

For us, the only way to keep things sane is constant reminders of "The Rules." 

I guess most families have rules, perhaps largely unspoken, about how to behave around the dinner table.

Our first rule is pretty ordinary - No Rocking of Chairs.  Since we bought M a wobble cushion he is much better, but there is still a large amount of rocking that goes on.  Every now and then there is a crash as someone falls over too . . .

The next rule relates to rocking - No Knees!  If left to their own devices M, J and frustratingly L will all brace their knees against the table.  That means they rock with barely any effort :(

The third, and last of the obvious rules, is Use Cutlery.  Ought to go without saying really, but it is said - a lot.

Now, I'm afraid, we move on to the more esoteric ones . . . Set purely for the retention of sanity.

No Singing.

No Dancing.

No Humming.

No Miming.

No Drumming.

No Banging.

No Minecraft discussions.

No Staring contests.

Seriously.  Most of those need to be repeated most days. 

Where else but an ASD household!

Friday, 22 November 2013

Lessons in life, from kittens and doors

Some times - when I am well rested and not stressed beyond thinking - I wonder about the many things that seem to come into our lives just to teach us things.

Are we particularly good at learning through experiences?  Do we (as a family) just have a lot to learn?  Is something else behind it all?

Right now we have kittens - you may have noticed ;) - and they seem to have a lot to teach us.

Each of the younger children have bonded with a different kitten, which is quite convenient really :)

A loves Tabitha.  A, being really rather girly by nature, loves animals and cuddly toys.  I think she has been getting just a little muddled with how to treat real animals, and has been pulling Tabitha around a bit - not maliciously, just lots of squishy hugs and carrying her about.  Tabitha is the calmest kitten, easiest to stroke, most chilled out.  She is reminding A - gently - that it's not on to be too rough.  There have been a few hisses and swats of paws with no claws.  And it's working in a way that me reminding A never has.

J likes Jet.  Jet is the fastest, the explorer, the smallest and most likely to squeeze into small gaps.  J has a tendency to stroke and pet Jet, but then forget he is there.  Short quick contact seems to suit these two best, and they are both thriving on it.

M is fascinated by Tortie.  But Tortie is standoffish, snappy, the most likely to hiss, bite and scratch.  She "telegraphs" her feelings very clearly in her body language, and will not tolerate being mishandled or prodded.  M on the other hand is not good at reading peoples body language, he used to dive for the kittens, and grab whatever bit he could reach.  Tortie has the most to teach M, and he has the most to learn.  She is showing him that her feelings matter, that he has to approach her just right, that he can't over-do it, that he needs to keep track of how she is feeling.  Like Tabitha with A, Tortie will reinforce the lessons with a paw and a hiss, but her claws are always out and M gets scratched. 

The thing is, for years I have been trying to get M to calm down with our dog.  Telling him hasn't worked, talking it through did nothing, but now Tortie is helping him listen and learn.  Will he be able to translate this learning to human interactions?  I have no idea, but it's a start, it's something more to build on.

There are other lessons that the kittens are teaching us.

I am the only one cleaning out the litter tray (no real surprise there) but the rest of my family are realising that if they don't give me time to do that job then it all gets a bit wiffy . . . They are seeing that all these "mummy jobs" that they keep interrupting actually matter, there are consequences if stuff isn't done.

Until now the kittens have been living in our spare room with the door firmly closed.  Next Tuesday uncle N is coming to stay, so the kittens need to move into the rest of the house.  Yesterday we opened the door and left it open for several hours, but apart from a few brief forays into the living room (next door) the kittens resolutely stayed put.  They were born wild, and roamed a long way before we ended up with them, but now after three weeks of incarceration they are afraid to venture beyond their perceived boundaries.  I hope that with time, and more leaving the door open, they will rampage through the whole house, but it is clear that their metaphorical wings have been clipped, their urge to explore has been dulled, and in so many ways that saddens me.

I wonder if this is an allegory for this generation of children. Born wild and free, exploring and conquering their world, only to be caught, incarcerated, confined and tamed by schools, to the point that they feel unsafe venturing outside the box they are put into.

I want our children to explore beyond the edges of their view, to cross the horizon, to find new ways to be and never stop.  Maybe the kittens came along to remind me to open as many doors as I could find.

Thursday, 21 November 2013

More on support

So, one of the reasons that half term was crazy was because we met up with a lovely local ASD support group.

The first session was at a local(ish!) soft play palace.  The group had exclusive use, and it was an evening session, with all height / age restrictions removed.

I have no idea how many children were there, but we took M, J and A.  It is one of the few times we've been somewhere like this and not had issues with other children, or complaints about ours.

The feeling of acceptance was overwhelming, I was able to relax and not worry.  My husband and I had a coffee / hot choc and a natter.  It was lovely :)

The kids had fun too - they all made friends, and there was a mass game of freeze tag going on up in the netting.

We met the same group at the end of the week too - to go bowling.  Again it was an exclusive use, which helped a lot!

Bowling is awkward for us - there is such a spread of ages - 14 down to 6 - and abilities that the scores are always well spread.  Seeing them all up on the screen it is very hard to encourage J and M not to compare and compete. 

We often have upsets because one feels useless compared to the others, or someone decides to try and beat their Dad's score . . . and this session was no different really.

Because we are mad (!) we went from the bowling alley to do a very quick bit of shopping (two things!!) and then on to a home ed Roller Skating session.  A made a new friend there, which was lovely, but M caused a bit of an issue :(

Often when we've been before the main lights are off and disco lights are on.  This time the hall was lit by the main lights, so once he had his skates on M went to ask the leisure centre staff to switch the lights off.  I hadn't noticed that he had gone, because I was still helping A get her skates sorted.  Suddenly the hall went dark - the disco lights weren't on, and now neither were the main lights . . .

There were already people skating, and now it was very *very* dark.

Someone hurried off to find out what was going on, and M came back.  We were then told that the main lights take at least TEN minutes to warm up and come on.  The disco lights came on, but they weren't very bright and a lot of the bulbs seem to have been blown.  So for the next eternity (or so it seemed) the kids skated in semi-darkness.  Eventually the lights came on, slowly, but how daft!

It's nice to know that M feels confident enough to go and ask random adults to do things, not so sure about the staff switching all the lights off without checking . . .

The craziness continued, as when we got home L had a friend visit, then M went out to chess club, J to a social club and A to visit some friends . . .

Pretty indicative of our terribly isolated (!) children's lives really.

A little late . . .

Life snuck up on me again.  Time to think has been at a premium, let alone time to write or post here!

I meant to post about Hallowe'en, so I'd better get on with that before it's more than a month ago :(

When we lived down in Nodnol my Mother in law used to "do" Halowe'en stuff with the kids.  It was a big thing for them, a tradition was born.  We'd go to our in laws, there would be sweets, pumpkin carving, dressing up, cake . . .

Then we moved.

Now we're an hour and a half away from our in laws, and we've moved on to a different - far more muddled - tradition.

Mostly we play a few games - flour towers, jelly worms, donut dangling, apple bobbing, balloon stomp - carve the pumpkins, and the kids dress up.

L (at 14 3/4) is really growing out of it all, but the other three still expect something fabulous.

This year was a mess, quite frankly.  M and J were out doing their Bikeability course the day before Hallowe'en, and the day itself.  That meant I had to be out too.  The day after we had more manicness planned. 

As things turned out that week - it was half term locally - was crazy.  The kids understood that we didn't have time to do anything much, and so when the opportunity to go to a "glow party" came up, that filled (most of) the gap.

The party was interesting - loud music, junk food and glow sticks, what's not to love?!?

J didn't like the level of noise, but he coped OK.  M took about an hour to "warm up" but was then dancing and having fun.  We met up with some of A's friends, so she was sorted.

We'd bought pumpkins a few days previously, and finally managed to find the time to carve them on the Monday after Hallowe'en, and they looked fab - please take my word for it as  I've accidentally deleted the pictures!  L didn't carve a pumpkin, but he did make pumpkin bread, and then some soup.

On the whole I think I prefer this Hallowe'en - less for me to organise, and as the children grow up they can just drop out of things and stay at home.  Maybe next year though it can be during a quieter week!

Wednesday, 13 November 2013

Some days

Some days I want to call in sick, let the rest of the team pick up the slack, and just *stop*.

Today is one of those days.  But there isn't anyone to call, the team would be my family - Hubby and the kids - and whilst I know they would do their best, unless I was somewhere else I wouldn't really get much of a rest.

So it's time to grit my teeth and get on with it all.

Last night M had four night terrors - the worst he has been for a very long time - and I didn't get much sleep.

He has a cold, and I think that disturbed his rest, with the screaming and panic that the night terrors cause in him, M was finding it very hard to breathe.  That caused more panic.  It was actually quite frightening to see my son pacing and gasping for breath, but there was nothing I could do.

Yesterday was an odd day too.

We were due to go to a local fire station with a lovely group of home edders.  J didn't want to go - after an upset on Monday and a cold.  I knew L wouldn't want to go.  So in the end instead of five of us, there were three.  We had a great time, and came home happy.

Then Hubby and I took M out to look at potential Christmas presents, with barely a pause between the two.  That was okish - though M had so many questions and anxieties along the way that it got frustrating.

Then a fifteen min break and kittens out to the vets . . . they are doing well, just need to get rid of their watery eyes and they will be discharged.

A bit of a longer break, and then a dog walk, trip to the doctors / pharmacy to pick up more medication for me, and then time to get A ready for Beavers and J for Cubs.

J couldn't find shoes he was happy with.  There was some shouting and stress on all sides.

Then the Tuesday night yo-yo for hubby - 6 pm drop off for A, 6:15 for J, 7 pick up for A, 7:30 drop off M pick up J, and finally 9:15 pick up M.  Not enough time to relax between journeys, but too spread out to stay out.

At some point Ruby, our Jack Russell had a hedgehog.  She managed to corner it, and when she was brought in there was quite a lot of blood on her face.  We brought the hedgie in, but couldn't find any injuries, and once we put it back out it seems to have wandered off eventually.  Ruby has some cuts in her mouth, but nothing major.  You'd think the daft pup would realise that the snuffle pigs have spikes!

So, today.  Tired.  Dealing with snotty monsters who didn't have enough sleep.  And it's a short day for us too - Hubby, L and M will be going out at four to their games club.  Not sure I can fit much in to the space in between now and then, especially as none of us are dressed . . .

Sunday, 10 November 2013

Cycles and stress

One of the many things to happen in October that I haven't managed to blog about was a Bikeability course.

We had the opportunity to book our guys on a bike safety course - I guess it's a newer version of cycling proficiency - organised by a local home ed mum via our County Council.

Since L has grown out of his bike and A isn't old enough only M and J went.

The first issue was sorting out their bikes . . . the paperwork said "roadworthy bikes" were required.  Personally I had no idea what that actually meant or what condition the bikes were in, so my husband and I set about checking over the two bikes.

I have never actually owned a bike.  He hasn't had much to do with bikes since he learned to drive decades ago.  Maybe we were not the best suited to do this?  But since we'd left it to the evening before the first session, we had little choice but to give it a go.

Brakes needed to be changed, tightened, realigned.  Reflectors needed fitting, seats sorted, lots of other stuff was erm . . . well . . . fiddled with.

We managed, between us, to get things sorted.  So off we went with two boys and two bikes squeezed into the car.  The sessions began near a community centre - in the tennis courts - and then if the children were safe enough there would be three sessions "on the road".  They had morning and afternoon sessions two days running.

The plan (ha!) was that I would find a bench nearby and read / knit / keep a vague eye on what was happening.  The group was small (six children), the instructor was fully aware of M and J's issues, what could go wrong?!?

Each session was to be 2 hours, and then half an hour for lunch, and parents would be supervising their own children at lunch.

I backed off, had a wander around and discovered there were no benches within clear sight / sound of the tennis court, the grass was too wet to sit on, and it was cold. Just as I was trying to work out where to be, things began to go wrong.

M and J needed helmets tightening, and with their sensory issues they couldn't manage that themselves.  So I stepped in to give them a hand, and then to help two more kids who needed help.

Then the instructor began checking brakes - earlier one of the other Dads had spotted M's brakes needed attention as he was dropping his children off, and *very kindly* sorted out the mess that we hadn't spotted. Things became calm again, until somehow J managed to detach the entire rear brake cable.

Remember how I said I'd never had a bike?  Yeah.  So, ten minutes of looking at the other bikes, and trying to work out how on Earth it had to go back, and we were fixed :)

At which point on of the other kids managed to break the brakes on his bike . . .

I spent a while trying before figuring out I just couldn't fix it, and the poor lad was in tears.  I helped him to calm down, then we needed to negotiate some sort of bike share so he could still join in.  That shouldn't be so hard, apart from the fact that the two children his size in the group are both Autistic . . .

The instructor was focussing on the other children, on getting through the program, so somehow all the talking and fixing ended up being left to me.  I'm *really* glad I stuck around, because otherwise I think it would have been a very stressful time for the whole group.

The children managed to share their bikes well, there were a few sticky moments, but by keeping a close eye on things, and being very encouraging we made it to lunch :)

The helpful Dad came back - and thankfully was able to fix the bike.  The kids relaxed and ate.  Then off the whole group set over the road into a small housing estate.

I went to wait in the library - warmer, dryer, but still close enough if things went wrong.

When the group got back - 2 hours later - the instructor told me that J had been a bit tearful and was very tired.

We went home, warmed up , and chilled for a bit.  Then I spoke to J about what had gone wrong.  He sees his bike as an escape - a way to get out on his own and release tension.  When was on the road, the group they were practicing various turns and junctions, and J kept forgetting to look the way he was being told to.  He had to keep repeating things that the others had mastered.  He felt as though his escape route was no longer a safe thing. He felt that he was stupid compared to the other children.  His last concern was that he wouldn't pass the assessment at the end of the course.

We had a long talk about how he was learning new things, how long a day it was for him, how he was one of the youngest in the group.  I gave him the chance to drop out of the next day if he wanted to.

In the end J decided to go back - as long as his father brought him hot coffee to have with his lunch . . .

At the second days lunch break I checked all was going OK with the instructor - she said both boys were hungry half way through, but otherwise all was good.

We gave them lunch, tea and coffee, and snuck a chocolate biscuit bar into their pockets to stave off hunger in the afternoon.

When they got back from the final session, J was in tears again.  He was worn out and it showed.

Both boys passed their level two bikeability, which made J cry even more.  He had been convinced he was going to fail it. The tears were happiness, relief, and exhaustion.

M was bouncy - very tiggerish -  and the instructor told him to focus on listening rather than telling everyone else what to do. 

As we were leaving M bounded over to give his dad and J a hug - it went wrong, because M nearly pushed the other two over.  That caused M to breakdown too.

Two tired boys, lots of learning, and a pair of certificates.  A bit of a rollercoaster, lots of sitting around waiting for me, but now we can feel a bit more confident that they are safe on their bikes.

Saturday, 9 November 2013

Cats update

Well, on Thursday mummy cat moved on - she was a lovely cat, very hungry for attention, very loud and purry.  But she kept going for the kittens, and we were having a hard time keeping them apart.
So, here as promised are some pictures of the kittens . . .

Can you spot the hiding Jet?
J with all three
J with Tabitha
L with Jet
L with Tabitha

Rugby rocks

Today M played in a rugby tournament at the local professional stadium. In itself that would be a cool event for any 11 year old.  For M though there is a history attached that makes it a triumph in many ways.

When we moved to this area four years ago, we knew no one.  Over the first few months we networked a lot, and met a group of local home educators, one of whom coaches at a (fairly) local rugby club.

M was invited to join the club - and after a lot of discussion we encouraged him to do so.

For a while things were OK, but it was clear that M had a learning curve to climb.  I had a couple of conversations with the coach about ways to help M integrate with the team, but I thought things were going in the right direction.

About a year after he joined the club I got a message suggesting that M was well and truly out of his depth, that he wasn't coping with the social interactions at the pitch side, and we were asked to pull him out of the squad.  Things - I was told - were way beyond the point of being salvageable.

We spoke to M.  My husband and I had long meandering conversations.  We felt that the situation wasn't all M's fault - in part the coaching team noticed him joining in with others messing about and targeted him unfairly, in part there was some bad blood on various sides, and in part M didn't understand what he needed to be doing or what he was doing wrong.

We asked M if he wanted to stop going to rugby - he didn't.  We asked if he wanted to switch to another club (my preferred choice), but no, he really didn't want that.  So we set about identifying what the issues were and doing our best to help M to work things out.

A major issue was personal space - at the side of the pitch, when queueing for warm up or training exercises - so we worked through some exercises and talked a lot about that.

We also talked about how M makes himself more visible than other children.  When there is a group messing about M is the most uncoordinated, the loudest, the one taking it a step further than the others.  So we talked about resisting the urge to join in with poor behaviour.  In some ways that felt unfair, but M often gets told off for doing what someone else got away with moments before.

The last part was focusing - and that we couldn't fix by talking.  M found it hard to stay focused for the whole training session, or for the match, and would end up away from the play with no idea what was going on.

It has taken a while, but between the work we have done, a bit of maturity, a slight change in the coaching set up, and the team learning to get along, M is now doing well.

With junior rugby there is a slow introduction of the physical elements of the game - they start off playing "touch rugby" (a touch instead of a tackle), then move on to "tag rugby" (pulling off a Velcro tag rather than a tackle) , then tackles are introduced, and then scrums.  M's age group (under 12's) play with full tackles and a scrum.

M has found a place in the scrum, and has settled with the squad.  There are still issues that an NT child wouldn't have, but he enjoys the game, and plays well.

Today the tournament had a limited number of players per team - and M was chosen - but more than that, he scored a try :)  When they got home M was so happy and proud of himself.

By persevering with rugby, instead of simply walking away M has learnt so much, and he is now a valued member of the team.  It might have been easier to pull him out, but I'm really glad we didn't!

Wednesday, 6 November 2013

On the other side

All in all, this afternoon wasn't as bad as I anticipated :)

We met with a doctor and a nurse / play specialist.  We had met the play specialist before and M really likes her.  That made it all so much easier!

We spent a long time talking about M as a baby - which was a bit tricky, we've had two babies since, and M is 11, so the precise details of 10 years ago are a bit fuzzy.  Then we moved on to toddler years - not much easier!

At the start of the appointment Dr Z made a point of saying that if either of them asked a question we were not comfortable answering with M there then it wasn't a problem - he could pop out to the waiting room.  Mostly though we were happy for him to stay.

We did have about ten minutes with him outside, when we talked about a few things we don't think he is aware of, but the rest of the time M was happy to stay with us and correct us every now and then :)

Most of the questions were about how interested in the world around him M is, and how he interacts with others.  There were quite a few open ended questions - and I think I talked a little much at those points! There were also a good number of precise questions, which I guess were to ask about specific indicators and issues.

After an hour and a bit we were all asked to wait outside for a few minutes, then about five minutes later we were called back in - the two professionals had had a brief discussion about a potential diagnosis and the way forward.

Because we home educate they felt the need to be thorough in their assessments, and there is one left that they can use - an ADOS - so even though they both felt almost sure of a diagnosis they want to do that, and then have an appointment to let us know their conclusions.

I am glad that we are nearly there - knowing that we are looking at just two more appointments is a relief. I can see that by not having the school based observations we have thrown their usual way of doing things into disarray, so I understand their desire to be thorough.  As the Play therapist explained, this is a life long diagnosis, and their duty of care is to M, so getting it right is important.

Most of my worries of this morning were unfounded - when home ed did come up, it wasn't an issue at all.  I wonder if that is because the play therapist knew M from the group assessment sessions, and had already discussed it with Dr Z, or if it was never going to be an issue anyway.  M had the opportunity to back out if he wasn't happy, and I managed to remember enough details of his babyhood to answer most of the questions.  I still can't remember whether M was a "looking around" baby or a "snuggling in" baby . . .

I would have loved to get a diagnosis today, but I'm happy with how things turned out :)

Appointment time

Today we are off to see the neuro developmental psychology team with M.

The appointment has been a long time coming - we last saw anyone at CAMHS in April - and I hope we are on the home straight now.

I will post later about how it went, but I wanted to cover how I feel right now as well.

I am nervous.  I have spent the last two nights going over questions I think they might ask, trying to work out answers, trying to remember facts.

At an appointment a while ago we were asked about favourite toys at the age of two - my mind went blank, and I couldn't think of anything at all to answer.  He must have played with *something*, surely?  But what?  Now - months later - I am pretty sure M didn't have favourite toys, he just flitted from one thing to another, joining in with the other people around him, reflecting their interests, copying their behaviour. I don't want to be caught on the hop again. 

I also want to protect M.  The thought of him hearing us go over all his difficulties feels so destructive.  But previously it hasn't bothered him at all.  What if it does this time?  How do I help him?

Another side is that this is a meeting with two new people - will home ed be an issue?  Will I have to defend our choices, explain the social aspects, convince them that there really is an issue that would still be there if M had always been to school?

Too many potentials, too much I can overthink, really I just want to be on the other side of this one.

So, this process is a journey for me too - and I hope that sharing my own feelings and moments of doubt might reassure others.

Crazy days

It's been a while since I blogged - we've had a frantic couple of weeks, and there just hasn't been time!  So this is an apology post, and a catch up on one of the smaller happenings that has had a big impact.  The educational bigger ones deserve their own posts, but that will have to wait a bit . . .

The biggest things in our lives at the moment are four new friends living in our spare room (called the green room, because the previous owners had *really* interesting taste in interior design.  It is lime green - walls, floor, blind . . . just a tad overpowering.)

A few weeks ago some cute little kittens and their mum came exploring into our back garden.  Most of the gardens along out bit of road are just grass, with a few toys etc.  We have two plum trees, a lawn, another tree, some overgrown bits, and lots of bird feeders.  Which bit attracted the kitties?  I have no idea - we also have various things that trap rainwater, and once we spotted the kittens we put some food out . . .

They came back, repeatedly, munching the food and climbing the trees.  It was magical to watch them play :) As a family we spend a fair amount of time watching the birds in our garden - we have large patio doors that are at one end of our dinner table, so it's easy to sit with a cup of tea and watch the starlings squabble, or the goldfinches massing on the lawn.  Watching the cats was a natural extension of that - the birds even stuck around, and watching the cats watch the birds was cool too :)

After a few visits it was clear that the kittens weren't well - gooey eyes on two out of three, and odd shaped bellies.  We set about enticing them in, hoping to get a better look.  We asked if they belonged to anyone, and found that the neighbour whose garden they were born in had called the RSPCA, and the RSPCA were not able to help.  We called the CPL, but they had no spaces in their foster homes.

A couple of days later - when half the house were out at the weekly games club - Ruby (our Jack Russell) went mad in the garden. She had cornered one of the kittens (in the dark, under a tree, in the overgrown bit of the garden.)  When I managed to get to them Ruby had the kitten in her mouth.  I had no choice but to physically separate them and try to check the kitten over.  A short while later a second kitten was "crying" outside the back gate - I went out and managed to catch her too.

Both of them were sneezing, audibly wheezing, one had gooey eyes. We called the CPL, and they said the only option was to either hold on to the kittens and they would pay for vet care, or let them go.  Given the state of the kittens we felt we had to give them a safe warm home and get them well again. 

We let our neighbour know, and a couple of days later the third kitten was caught and brought to us.  A few more days and mummy cat was caught and brought to us as well.

As much as we tried to get someone else to look after the kittens, it just wasn't possible.  We couldn't let them back out - they were already pretty ill and would probably have deteriorated.  The littlest would probably have disappeared, he was the sickest.  Also, now they are under the CPL's care all four cats will be spayed / neutered.  If they had gone back out, how long until there was another litter?

So now we have a spare room full of cats :)  The kittens are getting over their colds - possibly cat 'flu but not confirmed - they had worms, which have now gone, and their eyes are clearing up. We have been spending time with all four cats  -getting them used to human attention, and calming them down - in the hope that they will be easier to rehome when the time comes.

But there ^^^^^ is the problem. 

The children are now really rather attached to the kittens.   And Mummy cat is lovely too,( but she keeps attacking the kittens, which is a natural instinct to drive them off once they are independent.)

When the time comes, will any of us be able to wave goodbye to them all happily?

Maybe we can find a way for some of them to stay?

Who knows.  But for now they are having fun climbing our bookcases, wrestling with each other, being hand fed, and generally just melting hearts all round.
I'll take some (more) pictures, so you can all fall in love with them too :)

Wednesday, 23 October 2013

Stories and sharing

I read to M, J and A most nights.  I used to read to all four, but L is a bit too old now - he backed out around three years ago.  As the others grow older the stories we share have been able to become more complex too.

For a very long time we were "stuck" with Roald Dahl books.  I say stuck not because they are bad books, but because we read each of them soooooooo many times.

Another author who has been a firm favourite is Enyd Blyton - from The Wishing Chair to The Enchanted Wood, we've been on all those adventures a lot of times too.

J is very fond of Humphrey the classroom hamster, and he has a couple of books we've read, but we've had lots more from the library. I'm glad these are still being written because they are great little stories, with a strong element of "morality tale" to them.  J in particular likes books and TV programs that have an element of "social stories" to them.

A social story is a way of helping children understand people or their surroundings better - they have always been around in the form of books about "my first visit to the dentist" or similar.  They provide a framework for the reader - sometimes it's foreshadowing how things will happen (dentists / doctors / moving house etc), other times it's more helping them to understand emotions or how to react to things (death of a pet, funerals, divorce etc.)

Reading to children does so much good.  The obvious things - spending time, sharing stories, creating connection - are all there from just a few months old.  But there are far more subtle benefits too.  Reading a good book, or listening to one being read, will teach a child more grammar (by osmosis) than a month of lessons.  There is just no substitute for hearing words in context, and you get an instinctual "feel" for how language should be used.  When we read about the "inky black shadows" I don't need to explain the use of metaphor - it is self evident.  A good book will expand vocabulary too - there are lots of times I have to pause to define an obscure word, but never the same word twice.  By listening to stories, the children learn the ebb and flow of language, the rhythms and resonances that define a well crafted story.

At 11 most people would say that M is too old to be read to - but I disagree.  He thoroughly enjoys the stories, and it means that whereas he is not a voracious reader, his mind is still being expanded, and he is visiting new worlds without coercion.

At the moment we are reading the first Redwall book, by Brian Jaques.  I thoroughly enjoyed the set when I was a child, and it looks like M, J and A are going to as well.  The books revolve around the abbey of Redwall, and the mice that live there.  These are anthropomorphised creatures - with clothes and weapons - living in an almost medieval way .

Last night one of the main characters died.  J was in tears and hid.  A short while later we discovered that a second character was not dead (he's been missing) there was laughter, bouncing on beds cheering and "happy dancing".  All three of them have really grown attached to the little mice :)

There have been books we've read, notably Micheal Morpurgo books, that are just too sad for the  children.  Reading to these guys means I need to do some homework before I start!

So, there we are - what are your favourite children's books?

Monday, 21 October 2013

The end of group assessments :(

We've come to the end of J's groups assessment.  For the last five Fridays he has happily sat in a room with four other boys and done "stuff" whilst various professionals helped and observed.

I haven't been able to record here as much of what went on as I wanted, for one very simple reason ...

At the meeting about the assessments J was asked to make sure he respected the confidentiality of the other children in the group.  He was told it was a rule, and he signed a piece of paper. 

Anytime I have asked how things went I get a vague answer and am told it's confidential!  He has really taken that word to heart and is doing his best.

I can give you a general idea - from what I have picked up, what M did, and what CAMHs told us would happen :

  • Week 1 - getting to know each other, setting rules, general free play.
  • Week 2 - specific games, drawing our families
  • Week 3 - imaginative play, one to one role play exercise
  • Week 4 - physical games
  • Week 5 - trip to cafĂ©.

Each week they would sit and share one piece of news about their week, and they had a snack of fruit and water too.

The activities are chosen to give insight into what the children find hard, and they are observed keenly at all times.  The way the kids go into the group and come out is also observed, as are their interactions with parents at those times.

Just like last time I hope J was able to show himself as he truly is, and that the observations give the team a clear picture of at least some of his differences.

Now we wait - in 4 - 6weeks my husband and I will be back, and we will meet with two or three of the team that ran the assessment group, one of them will read through their "write-up" of the assessment, and discuss in depth anything we want to know more about.  At that point we will be told what they suggest happens next.

When M went through these sessions I had no idea what to expect, so I hope recording this here is able to help someone!

**Edited to add**

This assessment group is in part replacing the school based assessments that some children have - though the other children all go to school - and was looking at social and communication issues common in ASD, ADHD, and a few other conditions.


This weekend the children's Scout group had a camp.  The Beavers - A - went on Friday evening, went to Duxford on Saturday, then came home Saturday afternoon.  The Cubs - J - and Scouts - M - were dropped off on Friday evening and picked up on Sunday afternoon. At least that was the plan . . .
First order was packing.

A was no trouble at all.  She was really buzzing - it was her first night away from home.  I asked her to go and find the bits and off she went - all I did was make sure it was all there and pack the bag. 

M needed a bit more prodding.  He finds some clothes intolerable, so packing for him needed to be a bit more supported.  He also has trouble remembering more than three things at a time - so he went up to his room a lot more times ;)  We managed to pull together three days of clothes he was pretty sure he could wear (what he can tolerate varies depending on how stressed he is.)  The bag was huge, adding an airbed didn't help!

J.  Well, what can I say?  Last year there was a disastrous incident for J.  He went to camp as a not quite invested cub.  He was in the same section as M, but hadn't been for long.  This was his first camp - the Beavers call them sleepovers and they are only one night.  He had coped OK with the one nighters.  Somehow this was different.  Perhaps it was just too much all at one time - Uncle N had been visiting, and he was going home after J was dropped off.  L and J's Dad were going with Uncle N to go to a gaming convention. 

Whatever the reason, about three hours after J was dropped off (last year), when his Dad (and the car) were well and truly out of reach J melted down completely.  The leaders called me and I could hear J wailing and screaming in the background.  By then he'd been going for over an hour.  So they brought him home.

The next two days were tough - L and his father weren't due back until Sunday afternoon.  M was to be picked up on Monday.  J wanted to be with me at all times - holding on as if he thought I was going to disappear.  There were lots of tears, a few screams, and a very claustrophobic weekend for me.

J flatly refused to even think about going to camp for a long time, but in July when we picked A up from a day camp he noticed things he wished he had been able to try.  His "no" was softening. When the discussions about this weekend came up, he wanted to go - so we booked and paid for the camp for him.  Then (once we'd said yes) he was less sure.  We had lots of surface worries - little things that were masking the real issue.  We had lots and lots of long conversations, but in the end J didn't go.

When we dropped M and A off the Beaver leader said to me that she was totally different to M and J . . . I thought "Well, yes.  She's NT", but that's not the sort of thing you can say out loud really.

I was pretty sure she would cope fine, and I was right.  She had a great time, and was perfectly happy when she got home. 

I wasn't sure how M would cope - he hasn't been away from home much, and not since his night terrors became such a big thing.  As we dropped him off he was clingy - not helped by the fact that A had to be dropped off half an hour after him, so basically we all sat around doing very little for ages. M yo-yoed between us and the Scouts, not seeming happy or settled.  When it was time for A to go in she bounded in without even saying goodbye to me :)

So the camp happened.  The kids are now home, and everyone is happy :)

Wednesday, 16 October 2013

Lego club, and a small victory

Today was the first meeting of a new local club - a Lego club.

Organised by a very lovely and enthusiastic local home educator, we met in a library and the boys built!

We all had a list of blocks to bring, and herein lies my downfall :(

Somehow I managed to misread the list and didn't bring enough blocks (specifically we were short of blue blocks).

Can you see it coming?  I didn't . . .

I had prepared for A, J and M to build - L wanted to stay at home because he has a late evening planned. 

We took a big crate of Duplo for the younger ones to play with, and once things started A decided she would rather play with that.

As it turns out I am relieved that she did - she had a great time, and the boys were able to use the bricks I had prepared for her.  I think she enjoys being the older one in a group, and she was thoroughly enjoying building a farm with the younger girls :)

M and J sat together, and I plonked myself in between them hoping to be able to help them both. 

The session began with a short presentation about Mario and his history.  Then the lady leading the group showed us - step by step - how to build an 8-bit Mario.

At the first step we found out I hadn't put enough big blue blocks in.  M was very cross - lots of "I can't do this now!  You've ruined everything."  J was tearing up, collapsing in on himself. 

The lovely lady leading the group reassured them that we could improvise.  M was still cross, J still quiet but we got going.  I used a few techniques I am building up - a head rub for M, back rub for J, lots of praise, forewarning of problems before we hit them, helping them work out what to do rather than leaving them to it and finally pointing out that not many other people had all of the right blocks either.  It helped a lot that the other lad on our table also had problems with missing blocks.

I was worried that we were headed for a big disaster - not being able to follow instructions precisely is a HUGE trigger for both boys.  They feel the weight of expectations keenly, and it often causes meltdowns.

We were moments from a proper collapse from both boys - probably not helped by lack of sleep last night - and somehow in spite of it being a "perfect storm" moment we managed to skirt the edge of the pit and have fun :)

Both boys are pleased with their Marios - and I am too.  All in all a good day :)

Sleep . . .

Sleep is an issue for lots of parents.  I had hoped that now our youngest is almost 7 it wouldn't be a problem for us.  I was wrong.

Right from the beginning L had no real issues with sleep - as a baby he liked nursing to sleep, later he liked to be cuddled, but beyond that he developed good sleeping habits pretty easily.  Now, at 14 1/2, his sleep patterns are changing, but he is responsible enough to be handling that pretty well.

He stays up once the younger three have gone to bed, and the three of us (His father, L and I) watch a couple of TV programs, often including the news, then he goes to his room.  Watching the news with L is great - I can almost see his world view expanding before me, and we have some very interesting conversations.  I love that our relationship is a happy one and we can talk through the controversial stuff.  I love seeing him form his own views and work out how to put them across.  Sometimes we disagree and I love that too - he is very much his own man, I could no more make him think as I do than I could make him shrink to shorter than me.  Once he has gone up to his room he plays on his PC for a bit then goes to sleep.  I trust him to do that in a sensible way.  I'm not actually worried about what he accesses online - I don't think he'd go looking for anything dodgy, and he relishes the freedom to learn about things on his own terms.  There have been a few mornings when he has found it hard to get up, but generally our lives can accommodate that.  He is now moderating himself, because he hates "loosing the morning".  If we have an early start I tend to remind him of that before I go to bed, but I don't police his bedtimes.  So far it's all working well :)

M has always been a different kettle of fish.  He would sleep anywhere if he was tired.  And he had a pre-programmed bedtime - 8 pm.  Until he was about 3 1/2 he would fall asleep wherever he was, whatever he was doing, at about 8.  Often on the floor playing, or on the sofa watching TV.  That faded, but he has always been easy to get to bed.  A story, drink, kiss and tuck in.  The trouble starts after this.

M has night terrors - they have always been there, to one degree or another, and I suspect they always will be.  A night-terror differs from a nightmare in several ways - with a nightmare once the person is awake they might be scared, but they are pretty easy to soothe, and mostly lucid.  A couple of words and a hug and the person is back to sleep.  With M's night terrors it is never that simple.  When he wakes he is not really awake.  He is usually shouting, distressed, and still trapped in whatever is going on inside his head.  There is no reasoning with him, we can't touch him because that often upsets him more, we can't play along, all we can do is watch and try to keep him safe. 

For about three months earlier this year  we had a night terror every night - most nights we had two.  He'd be screaming, pacing around the dinner table for about 30 - 45 minutes.  We tried a whole host of suggestions - waking him just before the night terror usually happened, talking it through in the day time, providing funny endings to typical dreams, more physical activity, less activity, no TV, no computer, general "are you happy" conversations - nothing had any effect.  Eventually I read about "deep pressure therapy" and that struck a chord - M likes to be well wrapped, likes shoes done up too tight, likes to be under pillows - so I looked into buying a weighted blanket.

 Unfortunately at £100+ it wasn't an option.  So I made one :)  It worked - from the first night we had a dramatic improvement. Now, don't get me wrong, M still has night terrors, but it is once a week, or one every two weeks, not two a night.

J has issues too.  He always found it harder to fall asleep, and for a long time he would "yo-yo" - I'd get him to bed, and within minutes he'd be up for one reason or another.  In the last year that has (finally) disappeared :)  But he has issues with "little accidents" at night.  I have no idea how to counter that one - he doesn't drink much, doesn't have a night time drink, goes to the loo last thing before bed . . .

Lastly is little A.  Where we used to live we only had two bedrooms, so until she was 3 there was no choice but for her to share our room.  When we moved it took us a while to get things sorted, and she didn't go to her own room until she was four.  For the next year she was on the middle floor of the house with us - and the living room.  She loved to stay up and watch TV, and if we put her to bed she would also yo-yo, so we'd let her stay up for a bit then get her back to bed. 

The trouble was she didn't want to go to bed . . . for a long time she would stay up, happily singing, playing, chatting until midnight.  I have a video of her making up dance routines at 00:15 one night.  It took some getting organised, but by moving her bedroom to the top floor and by repeatedly shooing her back to bed we've managed what seemed impossible :)

Bedtime for A, J and M is now a couple of chapters of a book - currently Redwall - then discussion about what we are doing the next day, then toilet for M and J, then tuck in and lights out.  Most nights they go straight to sleep :)

Then we wait.  If M is going to have a night terror it is almost always before midnight.  If we get to that point it is "safe" to go to bed :)

Why is all this on my mind?  Well, to start with M had a bad night last night, but to follow up I saw this on Facebook : Go to Bed- it's an article discussing research linking irregular bedtimes and behaviour issues.

I know that when I am very tired I find it harder to cope with life's craziness.  I see no reason to think that my children are any different.  But I feel there are problems with the article - there are lots of confounding factors that haven't been taken into account.  The first, biggest, question is WHY.  Why the irregular bedtimes - does the child resist sleep (lots of SEN children do), is the home a chaotic environment (already known to affect behaviour), do the parents have difficulties that are preventing more organisation (parental difficulties are known to affect behaviour), is the family over programed (ie doing too many evening activities.)

The article states that regularising bedtimes improved behaviour - but what else has changed as well as bedtime? If the family time more organised, less activities, are the parents being supported and helped?

Looking at my own children I can see a couple of things -

reducing M's night terrors hasn't improved daytime behaviour.

J is no calmer when he has a full nights sleep.

A is happier now she gets a good nights sleep.

L is a grumpy teen ;) regardless of amounts of sleep.

I think, therefore, that for an NT child, getting enough sleep matters.  For a child with additional needs getting more sleep won't "fix them." 

That's all fine and dandy, but so far three people have pointed this article out to me as a way to help my kids.  Because that is what they have read into it - get your children in bed at a sensible time and all their issues will melt away.

That just leaves me feeling a bit like shouting "if it was as simple as putting them to bed on time I'd have done that years ago!"