Snow day!

So last week we were hit by “The Beast from the East”.  We got snow, and sub zero temperatures.  It wasn’t so bad at first, we walked to school and back for 2 days because last time I drove in the snow I bumped the car, much to the delight of the kids in the back who laughed and shouted “Again, again!”.  I couldn’t get up the hill to school so skidded into the kerb twice fortunately not hitting another road user or pedestrian.  So now we walk in the snow, well me and Popples walk and I push Oliver in his major buggy.

On Thursday morning we got a text saying school was shut, the wind had picked up something fierce and the snow was icy in patches and we were upgraded to Amber weather warning.   Beautiful to watch from the safety of the house.

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Winds crept up to over 40 mph the hating was on permanently trying to combat the various drafts.  Scotland was issued with the highest weather warning, there was a 16 car pile up on the motorway, on another motorway people were in their cars for 18 hours.  I don’t remember weather like this.

Friday we got another text – another snow day!  Kids were made up, we haven’t had snow deep enough to build a snowman in their lifetime, so me and Popples braved to wind and cold to build what my husband has called the most sinister snowman ever built.  Now I don’t think he’s that bad, I think it’s quite a good effort.  She was devastated when he started to melt “do something mummy!”

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Oliver managed to keep his clothes on long enough to come out and play snowballs, he was chasing his sister around and laughing his head off.  Lovely to see them playing, not so nice when he managed to hit me with a snowball while I was talking-straight in the mouth.  They ended up dismantling the snowman for more ammunition.

Unlike other countries who do have severe weather regularly, the UK is never prepared for extreme weather be it hot or cold, we come to a standstill.  I think the weather is our nations favourite topic of conversation.  Some have been hit hard, counties have been cut off with people having to walk through 12 foot drifts to get supplies of water, food and fuel.  And after this they’ll have the floods to deal with.  The weather seems to be getting more extreme, I remember when I was a kid we had seasons, now we just seem to get wet, windy and cold.  When we get 2 days of sun its a heatwave!  Anyway the little ones enjoyed their bonus days off- “mummy is it snow day again today?”  no sweetheart it’s back to rain “awwwww it’s not fair, I need a snow day”.

 

xx

Living in chaos.

The electrics in the kitchen were condemned and Wickes were having a 4 years interest free deal on kitchens, how could we resist?  The kitchen was falling apart when we moved in, I think there was only one door still hanging in the end, but with limited finances it got put on the list of things to do- in time.  Now with this deal and our new budget drawn up we could look at getting a kitchen, as the electrics would need doing it could all get ripped out rewired and fitted.  Hooray!

We had a man come round to plan it with us, extra tall cupboards, pull out corner cupboard things, a pull out spice rack drawer and the sink of my husbands dreams (not very exciting dreams admittedly).  In the old coal shed we could put the washer and drier and other sundry items thus leaving the kitchen as just a kitchen.  We booked it after tweaking it to fit in our budget and got an installation date.  Everything going well so far.  As it was a full refit, with electrics, everything had to pulled out and that’s where the chaos started.  The conservatory was packed with stuff we wouldn’t need til after the fitting, the living room contained 2 freezers, a fridge, a tumble dryer, kettle, toaster, crockery, cutlery- you get the picture.  Any other bits were put in bedrooms in boxes.  Kids couldn’t get their toys, we wouldn’t have a working oven for up to 8 working days, no sink for at least 3, no washer.  Fortunately my parents live not far away and would let us eat there and wash the clothes.  So I seem organised and have tried to explain to the kids what’s happening, showing pictures of the new kitchen and moving things while they watch.

Day one- the workmen turn up at 7 on the dot and rip out the kitchen, I say rip out, they probably give it a kick and it collapsed! “I don’t like these mens mummy” says Popples but we seem to cope with the change ok.  We go for tea, do a wash and when we come home the “mens” have gone which makes Popples happy.  Oliver struggles as there is no space for him to play, or lounge with his teddies after a hard day at school.  Then comes the next blow, the pipes have been waggled so a connection to the bath has come lose and started leaked.  The husband caps it off and I text mum asking if we can have baths there too.  He plans to fix it at weekend.  At this point we have one working tap, the bathroom sink.

Behaviours get worse as the week goes on, by all of us.  I’m running around dropping kids off, picking them up, going to the folks, bathing them, washing clothes, packing the clothes in the car to bring home to dry, wrestling three kids back in the car.  It’s chaos.  And for my 2 boys, it’s particularly hard as the routine is gone.  Oliver starts playing up at school.  I end up getting a phone call Thursday to come get him as he has stripped off and won’t get dressed.

The weekend comes and he gets all the plumbing supplies, spends 2 days working on the bathroom, moving the bath and sink as planned to give us more room.  I’d asked 3 times if we should just get a plumber- “no I can do it, it’s just some pipes” turns the water back on at 9pm Sunday night and theres now fountains in the bathroom.  My one tap, my one source of water has gone.  My husband is very upset at this point, clearly it’s more than “just pipes” when it comes to plumbing.  I knock on my neighbours door with 2 jugs begging for water, and I get more than water, I get a 20 minute gossip session too with some very juicy stuff.

The mens fit my sink the next day and I could have kissed him, he also emergency repairs the main pipe upstairs and caps off the rest so we have the water back on.  I get the number for a plumber but Leon knows a friend of a friend (I know, I can see whats coming too).  By this point I’m exhausted and stressed and can’t remember when I last slept and still have to do the school run, cope with three displaced kids and my dad feeding me mega portions as I’m “looking too thin and ill”.  The plumber comes, doesn’t fit the waste pipe properly into the outside waste pipe so when I empty the bath it comes down the newly plastered walls (it’s still drying out).  He also managed to take a tape measure, spirit level, screw driver, saw and other items that had been in the tool box.

I cry.  For hours.  My house is not my home, my kids are stressed, I’m stressed, bits are missing from the kitchen, and then someone says to me “it can’t get any worse, it’ll be great when it’s done” and then they listen to me rant for half an hour.  Leon manages to fix the drainage pipe so the bath works, the kitchen men plumb in my washer and cooker.

On Thursday (a week and a half after it started) I move the living room back into the kitchen, I clean non stop, and organise the toys and rug and teddies and I bring the little ones back from school to a home cooked meal.  Oliver’s face was a picture, wreathed in smiles, teddies on the floor, lying down and covering himself in stickle bricks.  Popples not so happy “I need to go to my nana’s”.

The kitchen is done, the bathroom no longer leaks, Oliver is now keeping his clothes on- at school at least, the odd pencil pot stills goes flying but he has calmed down in school, Max is trying to find his way around the kitchen but knows where the coke and crisps are so isn’t overly bothered about much else.  My husband has agreed in future not to attempt plumbing.  I knew it would be hard but this hard?  Although what eejit attempts a bathroom whilst kitchen is being done?

All settled?  Not a chance, with the severe weather Max’s ceiling has a major leak- think we will leave that to the insurance!

 

xx

 

He’s not naughty! by Deborah Brownson

hes not naughty

I’ve been trying to find some help on how to explain to a 3 year old the complex world of autism.  She has 2 brothers on the spectrum and asks questions which I do try to deal with “why does Max wear ear things?” because noises hurt his ears so this makes them softer so he can listen without it hurting.  The questions keep coming and the word Autistic has been mentioned which resulted in the conversation taking a weird turn “stick? like stick man?  Is he going to get stolen by a dog and get lost?  I don’t want my brother to go”.

Anyway I came across this book “He’s not naughty” when I was doing some research.  A lot of the books I came across had scathing reviews and many of them were about aspergers where my boys are further up (or down?) the spectrum.  This book also mentions aspergers but is not focussed on it exclusively.  It’s about the issues that people on the spectrum face, the senses are broken down, strangers, behaviour, bullying, feelings etc.  and the trauma it causes them.  It is also beautifully illustrated so although the text may be a bit too much for my 3 year old, the pictures are good for starting discussion.  It’s easy reading and explains things simply, so is useful for anyone starting out on an autism journey, be that a family member, friends or teachers.

It’s written by a mum who lives with autism daily, not by a clinician and it’s very matter of fact.  It doesn’t gloss over anything, it just explains things from Jake’s point of view as told by his friend.  I don’t think my review has done it justice, it’s a beautiful book and I see my sons in the illustrations.  It takes a complex disorder and turns it into manageable chunks.  It’s listed as a children’s guide to autism, but I think it’s an all age guide to autism.  It’s overwhelming, and you get used to speaking in jargon and doctor-ese, this book has put me back on the track to explaining to all ages that He’s not naughty!

 

xx

Playing together

Oliver and Popples are 2 years apart, he’s in year 1 now and she’s in nursery.  I always worry that as she grows she will leave him behind and they will both have an element of loss and loneliness.  Yet as I watch them interact and I look back on videos (I’m old school I always call everything recorded “videos”) I worry less.  They have a bond.  They may not always understand what each other is trying to do but they try to get it.

Oliver got hold of my tablet and was watching the videos of him and her playing.  One game he invented was to shout “aaaahhh” at her and she did it back and they got louder and more giggly.  One of them was of Popples putting a happy meal box on his head and saying “burger head” amidst giggles whilst he chased her about with the box still on his head.  She watches him play and I can see in her eyes she doesn’t quite get his obsession with building towers, but then I see her face change, when she wants to play with him, and as young as she is I can see her figuring out how to insert herself into his world and be accepted.  Usually passing a brick, or counting or naming the colour and she’s in.  They have eye contact and a common goal and he jabbers, she talks back- leaves a space for him to answer- then answers for him if there’s no verbal response with a “yeah?” at the end.

He sometimes wants to play with her, he hangs back a bit more, obviously unsure of her more complex games but she notices and invites him in.  They like doing “shops and cooking” as he can name foods and can play tea parties, drinking pretend drinks and nomming pretend food.  He likes to chase, monsters is a popular game in our house accompanied with lots of screaming and bumping into each other.

In the bath last night they were blowing bubbles in the water, he took his turn then looked at her expectantly- being tired she missed the cue, but when prompted, joined in.  Then a bout of screaming at each other and splashing water all over the floor and it was hair washing time.   Laughing he used an octopus toy to rinse her hair, she laughed and then used a fish toy on his hair.  If I had done that there would have been tears, but it was their game and they played for an age- until there was hardly any water left in the bath!

He has confidence in a lot of situations that she lacks and she looks up to him to see if it’s safe.  She is wary of parties and changes at school, but he had his party Wednesday at school so when it came to hers on Thursday she was ok about it cos “my bruvver had one asterday”.  She helps him with his speech and making sure I know what he wants, she accepts him and loves him and looks up to him.  He’s her hero.  He helps her with her confidence and being brave and climbing.  She wrecked his game the other day and where 6 months ago he would have smacked her he shouted “Peppy.  Go away!”.  The fallout was short lived,  It’s much more fun being pals.

I wonder how much is instinct.  When something scary happened when they were playing upstairs he got her into the bathroom and shut the door- obviously the safest place upstairs.  Is that just what older siblings are “programmed” to do?  (obviously they weren’t alone long, certain footfalls a parent hears and knows that it’s not good).  Although they have rivalry over toys, time on knees etc I think their relationship is really good.  I love watching them play, especially when they don’t know I’m watching.  I think I need to worry less- that bond will only grow stronger, so I will just enjoy watching them and their relationship that is pretty much 50/50.

 

xx

Bonfire night

We didn’t have a bonfire- it’s too risky with the little ones and the rain has been so fierce all our wood was wet anyway.  We got a small box of fireworks and some sparklers and some traditional fayre.  Mum brought black peas (eugh!) and parkin, Leon made jacket potatoes and sausages and we sat as a family and ate before the excitement began.  Max loves fireworks now, as long as they aren’t too bangy.  Popples does not like fireworks “they make noise that hurts my ears and tummy” so she had asked me if we could watch from the conservatory.  Oliver had screamed last year and shut himself in the living room until it was all over.  So we were expecting to be doing them primarily for Max.

However, when Leon brought out the boxes, Oliver went and grabbed his coat, hat and shoes.  Max was already ready, and Popples put her coat on and agreed to come outside with me.  That didn’t last long.  As soon as the first fountain had finished, we were in the conservatory.  We could see them and talked about how sparkly they were and she seemed ok with this arrangement.  Under big sisters supervision, Oliver got a sparkler and waved it around with a big smile on his face.  He “ooh”-ed at the roman candles and fountains, jumped and laughed at the rockets and signed for another sparkler, which he got.  The boys thoroughly enjoyed it.  It was a huge surprise after Oliver’s behaviour last year and his dad was made up.  Leon has had a few hard weeks, seems like the anger has given way to sadness, but seeing the boys laughing and taking part really perked him up. He said I’d missed out being inside but I didn’t miss out at all.  I got to see my son’s loving the experience, and I got to see the rest of the family enjoying my sons enjoyment.  We get to see so many struggles so for everyone to see this joy was amazing.  Who knew a few fireworks would bring so much positivity to the family.  Although it may have been that, for the first time ever, our Catherine wheel actually worked!

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xx

 

 

Discharged from paediatric services.

  • We had an appointment at the hospital on Tuesday.  Now this post may be a bit random at times because I’m still trying to process it.  The consultant has discharged Oliver from the paediatric hospital service aged 5.  There’s nothing they can do for him.

Now on one hand it’s nice to have some honesty but on the other hand it’s 20 years since Max was diagnosed and there’s still nothing they can do?  I know the NHS is at breaking point, so I understand them wanting to lighten their books and get rid of cases where they can’t do anything. But it feels like we have just been basically told to get on with it.  The doctor said “yes his behaviour might be unmanageable now but it may calm down as he grows up.  We have no sleep clinic here it’s miles away and I don’t know how you go about referrals” which made me ask who does know?  Apparently family support groups can help but they are full round here and aren’t really able to help anyone else at the moment.  Social workers are overworked and we aren’t an at risk family so no chance of getting one of them.  School nurse should know more.  If anymore non-autistic behaviours arise see GP for a referral.  The problem is as I learned through Max, is that all behaviours are put down to autism once they have a diagnosis.

I feel quite alone now and that it’s down to me doing the speech therapy work- we have a great ST, he sees her once a month and she has given me her phone numbers so I can check I’m on the right track.  School aren’t doing his IEP’s, he actually got sent home with homework last Friday and asking around it was the same as everyone else’s- Finding Nouns.  So you can guess how well that went down.  I know he’s my child and my responsibility, but surely school should be doing their part as they agreed to take him and the extra funding he came with.

I wonder if deep down I was expecting more from the professionals, if I was expecting science had moved on in 20 years.  I suppose it has in a way because the doctor made sure to point out to me that it was probably something from my genes that made him this way.  It’s always nice to hear that.  We have our first appointment at genetic counselling next month so we’ll see what they say.  I think overall I feel abandoned.  It’s down to me and the ST to reach him and make him fulfil his potential- whatever that may be.  I am not trying to make him conform, like school is, I’m trying to find a way into his world and share mine and maybe meet somewhere in the middle.  I’m trying to find a way to ease his frustration and make him happy.  I’m trying to stop the violence and tantrums and tears.  I’m trying to get people to realise he’s just as important as everyone else and has a voice and rights.  I’m trying to make him know he’s loved, no matter what he does.  I’m not worried he will fail- he can’t, I’m worried I’ll fail him.

He’s different- not less.

 

xx

Anniversary- at Bletchley Park

Our first anniversary was spent at Bletchley Park- Home of the codebreakers.  I know it doesn’t sound very exciting but to nerdy history obsessives like me and my husband (I’ve converted him) it was something we really wanted to do.  The office in the picture was Alan Turing’s, it’s where he actually worked.  We saw the enigma machine’s, we saw part of the thinking machine working, we learned so much more about the Polish contribution and the other great people who worked long hours, in secrecy to help stop the war.  There was loads of stuff I didn’t understand, the actual maths behind it, and the works of Alan Turing that were on display were gobblydegook to me.

Then when we watched the Imitation game we used our new knowledge to impress eachother “that’s not the mansion we saw, google where that one actually is- see I told you it wasn’t the real one” etc.  It just brings it all a bit more to life walking in the footsteps of giants.

We got to eat hot food with no one moaning for a wee, or a drink or “can I try some of your food” which was bliss.  We didn’t go anywhere fancy, but it didn’t matter, just as long as we got to eat together and have an uninterrupted chat.  Time together is not something we get much of, which is why I wanted to go away for our anniversary, instead of just going for a meal locally.  We don’t blame the kids for the time they take up, but having three very demanding children at home and one who is just as needy even though she doesn’t live here, means having the odd weekend away is a big treat and something we need to recharge our batteries and reconnect.  We sometimes lose ourselves in the day to day challenges and lose each other.

Its his turn to pick what we are doing next year.  To be honest I don’t really care what he picks as long as he builds in a hot meal, and some cocktails!  I think when you live lives like ours, priorities change.  Fancy hotel, bar, pool- ah you can keep them as long as I can have a sleep and a hot meal……..maybe a pudding too!

xx