Monthly Archives: August 2013

The one about tangle toys

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O is a fiddler.
He’s always fiddling with something. It help to keep him calm and focused and also relaxes him.
He had a bag of ” fiddles” that the educational psychologist gave him , it contained ribbons , feathers , stretchy rubber things , bubble wrap , but the things that could be broken were broken very quickly and the feathers and ribbons didn’t appeal to him much .
I wanted to get him a really good fiddle because at home he tends to * whispers* fiddle with his hands down his pants all the time , not ideal.
I looked on amazon and searched autism fiddles.
It came up with tangles they are bendy twisty tangles things.
They come in a whole variety of colours and textures.
I bought O two of them. Small ones , one hard plastic one and one fuzzy.
O loves them. He’s always got one in his hand. He takes them apart and knots and tangles them up.
He joins the two together to make a big even more tangley one.
He fiddles with it while he’s on the laptop.
They are actually are very simple thing , but they have done the job I wanted them to do. They seem sturdy and they only cost around £3 each.
O really wants the hairy one and I think he will like the knobbly one.
I really would recommend these to anyone who has a child with a need to fiddle.

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The one where Its not a tragedy

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By the time O and J were both diagnosed I already knew they had ASD. I had long suspected it and had thrown myself into reading the hell out of it. Which is my answer to everything.
So the diagnosis didn’t shock me and didn’t tell me anything new. It confirmed my suspicions.
I’m not devastated I really can’t be bothered to sit and cry over it because frankly I haven’t got time and actually it won’t solve anything.
There’s nothing wrong with a good cry at all. I cry alot , its Just that in this situation for me I feel it’s a waste of energy and emotion.
I’d much prefer to put my energy into doing everything I can to ensure my boys always get the help and support they need.
I’ve read ALOT of ” articles” where parents feel guilty.
I don’t feel guilty.
As far as I’m aware I didn’t do anything to cause the autism.
And I’ve done everything possible to get them diagnosed and supported so guilt doesn’t come into it for me.
I do have some feelings of sadness , as far as I’m concerned the autism is just part of who my boys are , and there is no reason why they can’t be who they want to be …. But the lack of understanding and awareness in society will have ( I’m sure ) negative effects on them.Their education has already suffered . That makes me sad.
I could be angry. I’m sure I have reasonable grounds to be angry, why do my boys have autism ? Etc but again there’s nothing to be gained from anger. It’s not going to help .

What I do feel is proud , of my boys because things are that much harder for them so when they do achieve something I’m proud of them for getting over a hurdle , big or small every hurdle is something to be proud of.
And most of all I feel determined. Determined to help my boys and determined to do my bit for autism. By raising awareness , understanding and raising more money.
Yes my boys have autism but I won’t allow it to be a tragedy for them. They are physically well , it won’t shorten their lives and they can and will live fulfilling lives.

The one where we talk about autism

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Autism…
Autistic people are all weird little geniuses aren’t they ?
Autism is just another excuse for bad behaviour isn’t it ?
Isn’t it bad parenting ?
Everyone gets diagnosed with autism these days don’t they ?

NO , actually none of that is true.
The thing that had become most apparent to me over the last few months is that people who don’t have autism in their lives really don’t understand much about it at all.

But they should because acceptance and understanding can make life easier for those with autism.

In this post I’m writing what I have learnt about autism and what I know from experience . I don’t claim to be an expert. Im certainly not.
I think the reason that people think people with autism are all geniuses is that many people with autism have obsessions. They will become obsessed with a subject and learn everything they can about it. For example they may be able to name every single dinosaur and tell you how much they weighed. Many autistic people also have very very good memories.
But generally autistic people vary in intelligence just like everybody else.

Autism is not bad behaviour or bad parenting. It is believed to be a neurological disorder .
I’ve also read an article saying that autism may be a whole body disorder also affecting things such as the digestive system.
From my own experience with O this rings true.
The autistic meltdown is very different from a tantrum.
Most autistic people have sensory issues.
The onslaught of sensory input that most of us would be able to filter out can become too much for an autistic person. For example in the classroom there can be lots of noise , lights , things to look at as well as smells , add to this that touch can also affect them ie clothing can be uncomfortable , itchy .. It can all get to much and cause a sensory overload which can in turn cause a meltdown.
Once in a meltdown the autistic child cannot control themselves , even after the meltdown it can take quite some time for them to fully recover.
Also autistic people have problems with communication , many are non verbal and many don’t understand tone of voice , gestures , idioms , and can also struggle to verbalise how they feel , not understanding or being misunderstood can be extremely frustrating which can also lead to a meltdown. Most parents will do everything they can to avoid meltdowns and when they do happen they can actually be very frightening for the parent and the child , the parents and child certainly don’t need judgement in these situations.

It is actually not easy to get a diagnosis of autism. It can in fact take years. Because autism is such a broad spectrum and affects everyone in so many different ways its not easy to diagnose. Also CAMHS are very underfunded and understaffed as well as often being under trained. Dealing with CAMHS can be frustrating , stressful and exhausting.
So autism is never just a quick diagnosis and an excuse for bad behaviour.

Many autistic children have sleep problems. They can take a long time to settle , and often wake many times at night , again it’s not bad behaviour. There are many possible reasons for this , it is believed that in many autistic people the body does not release melatonin at the correct times. ( melatonin is a hormone that helps you to sleep)
Also autistic people can be disturbed by stimuli all around them , noises , lights , the feel of their pyjamas and find it hard to filter out these stimuli.
It’s also possible that after a day of an onslaught of sensory stimuli it can be very very difficult to switch off and relax.
Melatonin tablets can be a help for autistic people. O now settles to sleep much easier and is now usually asleep before 9 rather than screaming and shouting till after midnight.
Autistic people are not all lonely. Many of them actually enjoy their own company , that’s just how they are and if they do find it hard to interact socially it’s not because they ” aren’t very friendly ” it’s because it’s actually very difficult for them.
They often can’t cope with eye contact which can make them seem awkward , disinterested , but actually eye contact can be excruciatingly difficult for them.
Insisting on eye contact can’t be very distressing.
Many autistic people suffer from anxiety , especially in social situations which can make these situations even more difficult for them.
Often , for example in school
An autistic child can appear to be disruptive. Displaying difficult behaviour and sometimes seeming to enjoy being disruptive this is often the child’s reaction to the fear they feel in a situation they find difficult.
Tics are another thing that many autistic people suffer with , often caused by or made worse by anxiety. They make repetetive , sometimes inappropriate noises or movements.
They don’t do this on purpose , they are not trying to be annoying. These tics are involuntary. And will often be made worse if attention is brought to them.

Autistic people and parents of autistic children don’t want pity or sympathy , or even a cure , autism is part of who they are , they want others to be aware of what autism is and to understand autism , and to support them by allowing them to be who they are.
My psychiatrist told me that the most important thing for my boys is that people around them allow them to be who they are , accept their personalities and support them in doing what they want to do without pushing them to so things that are just too difficult.
As someone said to me tonight ”
If people were to embrace autism instead of being terrified by it, so much progress would be made. ”

Autism is not a tragedy ,
The tragedy is that there is so much ignorance around it.

The one where we talk about teenagers

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Teenagers …
I’m afraid to have to break it to you that if you have a cute bouncing baby or a funny little toddler one day you will have a teenager !!

I don’t want to go all Katie Hopkins and tar a group of people with the same brush but teenagers are horrid.
Now, I have my own teenagers I have a 17 16 15 and 14 year olds. I also have one who has emerged into adulthood at 20. I love them all , entirely , but they are horrid.
It’s almost as if when they reach teenage years their brains , minds, and emotions take a U turn onto a whole different plane.
They become different people.
They become teenage creatures.

That lovely little child you had , that learnt so well how to say please and THANKYOU , and would say it on demand so you could show off their skills to anyone who may or may not be interested …. Well , they will forget how.
Their manners will leave them as they enter the parallel plane of teenage hood.

Despite everything they have learnt up to this point they will now have an unshakeable belief that money grows on trees. They cannot understand why you can’t just pluck a handful of money every time they need new vans, phone top ups , Xbox games etc etc etc

A teenager is unable to locate a laundry basket. Even with instructions they just cannot do it.
Therefore teenagers simply have to leave ALL their dirty laundry in a screwed up heap on the floor.
Sometimes even next to the washing basket. ( so near yet so far)

Teenagers lose the ability to see food clearly. They can open the fridge , fully stocked that day and announce that there is ” nothing to eat ” sometimes they will open the fridge door 20 times to see if the food will magically appear.

Although a teenager is very capable of carrying loaded plates of food and cups full of drink up to their room , they are simply not able to carry them back down.
Their eyes must also be affected because if you enquire after your missing cups plates , spoons , they will tell you they don’t think they are in their room.

Whilst on the parallel plane of teenage hood they suffer hearing loss. They cannot hear the front door knocking. So do be prepared to stop everything you are doing to answer the door while your teenagers sit doing nothing more than staring gormlessly into space.

A teenager will revert back to the terrible twos in any situation where a) they may be wrong or b) they don’t get their way
They will stamp their feet , slam doors and throw things. Teenagers are particularly skilled at storming off.
A teenager will make sure you are aware that they are annoyed , the huffing and puffing and stropping around
When you ask what is wrong you will first be met with ” as if you care anyway ” don’t reply …. Because halfway through your reply they will tell you anyway.
And you can bet your life on it that it’s you who has upset them.
They will delight in a rant about everything you have done wrong over their WHOLE lives
When you attempt to reply to these charges your teenager will respond one of two ways 1) as soon as you begin to speak your teenager will declare ” oh my god you always shout at me ” you may or may not be shouting. The volume of your voice is actually irrelevant , your teenager will interpret it as shouting . They will them storm off , in a particularly skilful manner , slamming doors on their way.
2) you may manage a few words before your teenagers declares that ” oh my god you don’t even understand what I’m saying , it’s not worth taking to you
” and storm off skilfully slamming doors on their way
You won’t win. It’s best accept that now.
As for the mess , the fact they they never notice when you call their mobiles ( although they are always looking at it) and their general moody dispositions , well I don’t want to scare you so we won’t go into all of that.

The good news is that you will ( hopefully) emerge on the other side of teenage hood with a lovely fully grown adult who will once again be safe to unleash on the world.
Until then buckle up and stock up on Crisps wine and chocolate !

Before you go back to school ..

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O , my lovely boy ,
In a week it will time to go back to school.
I know you didnt enjoy year 3
In fact it was absolutely awful
But we’ve had a lovely summer together.
We’ve had some good days out.
We’ve played I’ve even run around with nerf guns for you. ( it was fun)
We’ve had lots of cuddles
And lots of lazy mornings in bed
And we’ve got the answers we needed
I know you are worried about going back to school
But I think it will be better this year
They know why it’s a bit of a struggle for you
And they know its not your fault ( I always knew that )
They say they are going to help you
And I will be watching and making sure they do.
I will be on your side and fighting your corner every day ( for ever)
I will do my best to make it easier for you
We can walk to school quietly , I wont yabber on about stuff I know you hate when I yabber on on the way to school.
I won’t kiss you at the gate
I know it’s uncomfortable for you
But I’m gonna have to give you a little kiss goodbye before we leave home
On your forehead , and you can tap it in so it stays all day
And at home time I will be there every day , waiting for you , I will try not to have my worried face on i know you don’t like if i have my worried face when you come out. I will practise my ” me … worried … pah !! ” face for you. And I don’t mind if you come out a bit cross and don’t want to talk on the way home , we can walk quietly ( you always hold my hand by the time we get by the co-op anyway.)
I do hope that this year its easier for you to tell me me if anything upsets you at school or makes you cross though.
Because then I can help you.
And I want to help you.
I want my lovely boy to be happy at school.
I’m so proud of you that last year when school was really hard and you really didn’t want to go you were brave and you went anyway.
And I want you to be proud of me , I want you to be able to say …. My mum helped me when school was hard , she was on my side and she understood.

Me and you will get you through year 4 together. And O , I want you to always know that I’m proud of you even when you don’t have such a good day because you are my boy and I am your mum.

The one where O goes to sleep

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When we saw CAMHS last week and O got his autism diagnosis ( at last) he was prescribed melatonin to help him sleep at night.
Bedtime with O has always been difficult. Getting him to bed in the first place was a nightmare for as long as I can remember. Then he would either have a raging screaming tantrum in bed for hours or he just wouldn’t settle down. He would mess about and fiddle and talk.
It was often midnight before he was properly asleep.
I’ve been having to go to bed with him every night and I’ve been stuck there so I’ve had no time to myself in the evenings and we’ve both been very tired in the Mornings because tantruming till midnight is hard work.
The melatonin is – the psychiatrist told me- a hormone , it’s not addictive and it’s not dangerous.
O is able to take one or two 2 mg tablets a night , about an hour before I want him to sleep. So far I’ve only given him one a night because I wasn’t sure how they would affect him.
He takes it at 8. And he gets tired. Not really drowsy , more relaxed.
He actually reminds me at 8 that’s it’s time for the tablet.
By 9 he is asking to go to bed.
I’ve still been laying with him but this is his 5 th night on melatonin and so far he’s been asleep after 15 minutes each night. He sleeps like a log. Last night I actually got back up and ate a pudding ( bread and butter pudding , with custard) had a cup of tea , watched a little telly and read a chapter of my book. I went to bed a whole hour after O and I was relaxed when I got in bed.
O had been much less grumpy as he’s getting much more sleep.
This week I’m going to try leaving him to go to sleep on his own.
I will sit with him for 5 minutes and then leave.
I’m not that confident about it to be honest but now that he falls asleep so much more easily it’s time to give it a try.
He is almost 9 after all.

The melatonin has done wonders. I’ve got my bit of time before bed back , along with a bit of sanity and O is getting a good nights sleep every night.
It’s a win win situation 😴😴😴

The school shoe shuffle , what a hoo ha

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The kids are back to school next week so it was time for the annual visit to Clarks. For the school shoe shuffle.
The moves to the school shoe shuffle include the sales assistant going in and out of the back room multiple times with boxes of shoes , the kids putting their feet in and out of the shoes and me saying can we try another pair. The shuffle varies in the time it takes. Sometimes just one round of the shuffle , sometimes you go round and round.
Today was a day for going round and round !
I only had the 12 y/o Z and the 14 y/o E with me as the 15 year old already twisted my arm to buy her black vans and O is refusing to wear school shoes so I thought we would be quick.
Z went first , her feet were measured , half a size bigger than last year and she wanted the same lace up shoes that she had last year , easy , then E was measured.
She measured as 3 and a half which was odd as last year in Clarks she measured as 5.
She tried on a few pairs , they were too tight , so the assistant got all the shoes in a bigger width , still too tight , i asked the assistant to measure E’s feet again , she is definitely a 3 and a half so then we tried all the shoes in a bigger size , still too tight so the lady went upstairs to the ladies shoes and got a pair similar to the lace ups Z had chosen.
They fit nicely.
As the lady was boxing them Z sighed and said she liked E’s shoes better and rather dramatically wished she could have them too , so the lady went and got a pair for her .
About an hour after we got there we were done , we paid and left the shop assistant with a pile of shoes to put away and probably needing a lie down , by the entrance to the shop was a display , I saw it just a moment before Z and I knew exactly what would happen , ” OH MY GOD the have the same shoes … But SHINY. ” ( patent)
After much to-ing and fro-ing , because Z was a little embarrassed to go back in we went back in and asked if we could change the pair we just bought for a shiny pair.
They didnt have her size so they kindly ordered them and we will collect them on Friday.
We also had to buy school bags .
E had chosen a school bag in Clarks but Z wanted a bag from Claire’s which was a bit more pricey , I told her … Quietly I thought , that if I bought her the bag and she didnt tidy her room tonight I would cut the bag into tiny pieces. Cue laughter behind us ,and 3 ladies declaring to Z that they were all witnesses so she had better tidy her room.
The bag is either the weirdest or coolest bag ever … I’m not sure ….

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It has a hood !

Thank goodness we only do the school shoe and bag shopping once a year.

The last week …

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The last week of the holidays is here already. The bit where the girls were away felt really long at the time but now it suddenly feels like its all whizzed by.
We have lots of stuff to get done this week ….
We want to go to battersea park children’s zoo again as O really enjoyed himself there and the girls missed out when we went .
We also want to go bowling because the kids really enjoy that.
We have to do the dreaded school shoe shop , where we spend forever choosing shoes and I hand over ALL of my money to Clarks.
As well as the stationary shop.
I want to get to the entertainer toy shop as I was in there yesterday and lots of the things I was going to get for O for Christmas and his birthday are half price in there right now.
The boys need haircuts. Getting them to the hairdressers is not an easy job but its got to get done.
The big ones need done new clothes so they look smart for college , the 17 y/o has to enrol this week. So that means a shopping trip with the 16 and 17 year old ( never fun )
And I also have to go and get a copy of a birth certificate , the one I need is the only one I can’t find. ( as always )
If we manage to get that lot done i would really like to squeeze in a trip to either the war museum or the army museum as that’s the last thing left to do on our bucket list.

After all of that we will probably be needing a holiday … But it will actually be time to get the kids packed off back to school.

I hope it’s not just me that has left ALOT till the last minute.

Here’s to getting things done this week !!
🍻

Diagnosis autism

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Following my letter of complaint to CAMHS I was offered an appointment for last Thursday , which was surprising as I was previously told it wouldn’t be until the end of October.

I was very nervous before the appointment and was actually feeling a little guilty about the letter , but my mum came with me for a bit of support.

We managed to get both of the boys to the appointment without too much palava , which was a small miracle .

The consultant psychiatrist was extremely thorough and he asked ALOT of questions , explained lots of things , chatted , and further assessed both boys. It’s amazing what a complaint can do.
We had a two hour consultation , he formally diagnosed O with autism and tics.
He has prescribed Melatonin to help O sleep at night and hopefully help me to start being able to leave him to go to sleep on his own.
He is also going to start O on medication for his tics. He’s already asked the gp to arrange the ECG that O needs before he starts the medication so hopefully he will be able to start taking it soon.
He’s also making a referral to the autism advisory service , I believe the school have already done this but it’s good that now they will have his proper diagnosis .
The psychiatrist also said I need to start planning secondary schools already. As he needs somewhere with ALOT support.
O has taken the melatonin twice now , I give it to him at 8 , by 9 he’s very sleepy so I’ve taken him up to bed at 9 and so far it’s taken 15 minutes for him to fall asleep , rather than 2-3 hours , and no screaming tantrum.
On Monday I going to start leaving him on his own in bed. I need to do it before he goes back to school as it will be too stressful for him to do it then.

The psychiatrist also finally diagnosed my 17 y/o , he has been under CAMHS since he was 9.
At first I was told he was just ‘misbehaving’ I was even referred to parenting classes.
Then at 14 when he was no longer able to cope with going to school and stopped leaving the house he was diagnosed with depression and social phobia , he also has tourrettes.
He was never statemented or given any real help when he struggled in school. Nor when he tried , and couldn’t cope with college in September.
He has been formally diagnosed with autism , social anxiety , tourrettes and OCD. Like O he has been given melatonin to try and help him sleep at night.As he usually stays up all night and sleep for a few hours in the day. And after an ECG he will also get new medication for his tics. He’s staying on sertraline for now , I just need to push him to take it regularly.
The psychiatrist will be referring him for CBT. And also helping him to get special needs help in college. He wants to try again !
His support worker will be seeing him twice a week to get him out of the house and help him to learn to manage being out and around people.
I’m angry that it took this long to get help. But , I think we are on the right track now. It’s not too late !

The psychiatrist chatted ALOT about autism , explaining it to the boys and talked about famous people that have had / got autism. And he said at the end of the appointment that …the most important thing is that people around the boys ( ie college , school, anyone who works with them , family )understand that this is who the boys are , the autism is part of their personality and nobody should try to make them change , just help them to be who they are.

I’m not upset to get a diagnosis for the Boys because I already knew. I think I have come to terms with it already. And I think that now we can move forward and help them both to do as well as they can.

There were apologies , and the psychiatrist told me that he has been asking his manager for help for years. And that it keeps being promised but never happens. Apparently he was promised £300,000 for CAMHS this year but It didn’t happen.
He said that he has tried to help my boys sooner ( aswell as other patients) but that the children self harming and trying to commit suicide have to come first for him , which I think goes without saying. I completely understand that but there should be someone other than just him to deal with patients that otherwise stay at the bottom of the pile.
It’s disgraceful that CAMHS are not able to help young children properly.
How many of the children that stay at the bottom of the pile become those who are self harming and suicidal ??
I don’t know ! But I bet it’s quite a lot.

I am glad I made a complaint because while I understand CAMHS are understaffed and underfunded my priority has to be my boys.
And I hope that if people do complain the people in charge of the purse strings will one day see that they need to do more.

Change won’t happen unless it is demanded.

A round up of who I’ve made ….

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D is my eldest he just turned 20. ( yes Im that old ) born in August 93

He has been my calmest child. He didnt crawl till 18 months. There was nothing wrong , he was just too lazy.
He’s never actually given me a day of worry.
He’s at uni. Doing a degree in physics.
He’s a complete science boffin.
And he knows everything about everything. ( well , according to him)
He’s good at making pot noodles too.

Next is J. He is 17
born december 95

He was due on Christmas Eve but arrived two weeks early , blue , with his cord around his neck.
He has autism and OCD , anxiety and tourrettes. Diagnosed today , after 9 years of fighting.
He loves computers. Games. Consoles. He’s forever upgrading, downloading, modifying stuff.
He was IQ tested last year , scored in top 3 %
He’s just started level 2 ICT at college.

Then we have B. 16.
Born in April 97

He’s my fixer , painter , toilet seat mender. Also my spider remover. He’s very handy. Likes doing jobs. But nowadays only for money :-/
He’s just started college to do level 2 plumbing. He’s my clumsy one. He had 3 broken ankles in a row , left , right , left. He also stuck his hand up the Hoover when he was almost 1 and took a whole chunk of skin right off. Since he was a toddler and was always flooding my bathroom playing with the taps I said he’d be a plumber , looks like I was right.

Then we have a run of girls …

L 15
Born march 98

L is my footballer. Chelsea mad. She plays in a team. And trains almost every night. She has played at Stamford bridge !! She was a mascot at an England international game. !
She just did her bronze d of e award. She camped out in the snow.
She’s also very clever. Especially at maths and science.she just got her A in maths gcse. Usually wearing a Chelsea shirt.

E 14
Born July 99

E is quiet , a little shy , but just lovely. She likes to go to bed early !! Which is a rare thing among my children.
But shes the worlds fussiest eater , she’s a complete an utter take that nut.
She loves them , ALOT. We went to see mark Owen in concert for her 14 th birthday.
She’s also very good at drawing. She’s usually found on her bed listening to take that and drawing them.
She’s the reason I get up on time every morning. She bounces out of bed at 5:30 and makes sure I get up 🙂

Z 12
Born August 01

Z is my funny little ginger nut.
She’s a little shy , she used to be very quiet. But not so much since she started big school. I worry as she’s always the youngest in her class. But she has blossomed this year. And become as chatty outside as she has always been at home.
She has a real flair for style. Clothes. Make up. Hair. She loves it all. She’s so Girly. She already loves handbags. And sleeps with curlers in.
She always cries at sad movies.
She’s cried all the way through a few. War horse and Hachi were emotional for her. ( and for me)

Last but not least we have O.

He is 8. Born in December 04

O has autism and tics.
He’s also a loving , funny , bright , cuddlesome( is that a word ? ) boy.
He mostly likes computer games.
And quite enjoys museum / zoo days out. He likes to learn. He’s always asking questions. He has the most awesome memory. He remembers everything
He’s sure he has been to china , he remembers it , always has done ( he hasn’t been )
Usually found in my bed.