Category Archives: autism

Pyjama walk for autism

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Hello fellow bloggers and tweeters, as you may know its autism awareness month , you may also know that I have two boys both with autism along with other co morbid conditions .
My friend Sue also has two boys with autism , last easter we did our first sponsored walk , in pyjamas , for the national autistic society ,raising almost £300 in total , this year we are doing it again on august 17th 5 miles in our pyjamas , i cant walk any further because as ive blogged previously I’m very poorly !
This is where I’m going to ask for your help, we’ve all seen what bloggers can do for charity please help us to beat our £300 that we raised last year !
You can help us by sharing this post , tweeting links to this post and our virgin money giving link , blogging about the walk , anything that may help
You can also help in a fun way by sparing a morning to walk with us , in your pyjamas , you don’t need to come to london , you can walk where you live , blog , tweet about it , instagram it ! I would add you to our money giving page of course , if you have a child in a buggy you could just walk a mile ( or two) in your pjs or if you have kids you could do whatever distance they can handle , it would be awesome if anyone would join in , it would mean a lot to myself and Sue , and we raise even more than £300 this time .

Our virgin money giving link is here http://uk.virginmoneygiving.com/team/TeamPyjama

Please help us do something wonderful for autism by raising money for the national autistic society , if you cant do the walk ( please do the walk) then please support team pyjama and the pyjama walk for autism on social media
#teampyjama
#pyjamawalkforautism

I know times are hard and we are all a little charitied out right now but this is for such a great cause , please help if you can

Thankyou for reading , G x

The one where i ‘don’t know what I’m doing ‘

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“we need to pop to B and Q on sunday , just in and out to pick up a roll of wallpaper”
I thought I approached the matter well, I was very clear about what we would be doing and B and Q is just a little bus ride away so wouldn’t take long and Ollie probably wouldn’t mind ,I thought wrong ,of course !

His first argument was weak “er mum you know I don’t like going shopping ”
I countered this well ” Its not really shopping its just popping in to buy something Ive already chosen ”

He was just warming up “mum,is it a great big place , where there are lots of people and its full of all different stuff right up to the ceiling ? And do we need to go on a bus with people to get there ?”
“Well , yes it is ” I told him
“So you are going to make me go somewhere that is all the things I hate ?”
“Well , the thing is that when you have autism sometimes you have to do things you hate and find hard ,so its good to practice a bit to get used the feelings and try to cope with them”

By now he was firing on all cylinders ” the only reason I need to get used to busy shops is if you are planning to make me go and live in debenhams ”

Debenhams ? He’s never even been in debenhams !

“Look ” I said I’m just doing my best to help you get used to things ”
He huffed , puffed and then replied ” sometimes when a person has autism , the person with autisms mother doesn’t know what she’s doing ”

I *might* have muttered something about someone being a smart arse .

I think i will just pop to B and Q on my own .

I’ll do it my way !!

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As you will know if you’ve read my blog before I have two boys with autism. One is 9 (Ollie) and one is 18. Both have other conditions along with autism.
Until two years ago I didnt really know much about autism. My teenager was only diagnosed last summer after 8 years of me fighting for diagnosis and never really knowing what he had , Ollie was also diagnosed last summer.
Even now with two children diagnosed with autism I’m not an expert on it. I know my boys , I try my best to understand my boys but autism is a continuos learning curve. I would never presume that I know all about another person with autism because as they say if you’ve met one person with autism , you’ve met one person with autism
One thing I get very tired and frustrated by is people who just don’t understand at all giving me advice or their opinions on something they just don’t know .
As an example of this , Ollie doesn’t like going out. He finds it all very difficult. People , noise , the unexpected , it’s all just very difficult for him. I took him out of school in November and in the first few weeks he didn’t really go out atall. Since then I’ve built it up to a trip in to town once a week , where we have lunch in McDonald’s and usually go into one shop. This involves a couple of bus rides. And a visit to my mums at the weekend. Another couple of bus rides.
Ollie needs a couple of days notice if he has to go out and he’s very stressed before we do. He becomes anxious , agitated , his tics increase , it’s very important that there are no surprises and we only go to the places he’s been told about.
It means I can’t just take Ollie out if I need to run some errands. I can’t just pop to the shop with him or go window shopping.
There are some that believe I should be pushing Ollie more , making him go out , even that I’m allowing Ollie to control when I shop. Some people don’t understand that if we are in town I won’t make him go into a shop that he wasn’t told about. Whereas I feel very strongly about only doing things I’ve told him about. I get criticised if I don’t take him out every day.
Well , first and foremost , Ollie needs to know without any doubt that he can trust me. That he is safe with me. And that I understand the things that are difficult for him. He knows that I expect him to try going out and he knows I’m trying to increase it but I’m not going to rush him. Going out to busy places is very stressful for him. I don’t want to put him through stress. Why should I ? And as far as controlling when I go shopping , yes he makes it difficult , but I have 5 teenagers , if I need to go out I will do so when one of them can look after Ollie. I manage just fine.
Obviously I want Ollie to learn ways of coping with going out but pushing him into situations isn’t the way to do that.
With the nice weather coming we will start doing smaller more manageable trips to the park across the road or taking the scooter out for a ride. Ollie is happy not going out , why shouldn’t he be when it’s so difficult for him. He feels very safe at home.He lives with me and 6 siblings. People come to the house , he visits my mums house , he’s not living under a rock. He’s fine. He’s happy and we will take things at his own pace.
I could go on and on with examples , bedtime , mealtimes , meltdowns , I deal with these things in the way I feel works for my boys. And I’m sure that there are others who would deal with them differently. And that’s fine.
I always appreciate advice from people who have an understanding of autism , I even appreciate input from people who don’t know much about it, advice when constructive and from a well intentioned place is often a good thing. but what I don’t appreciate is criticism from people who really have no understanding.
I’ve never had much time for my boys psychiatrist , mostly because I generally find CAMHS useless. But after the meeting where he diagnosed my boys he told me that the most important thing to do for an autistic person is to allow them to be who they are. Don’t try to change them , just help them be the best THEY can be. and that will always stay with me.

So mum what do you think of obsidian ?

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So mum what do you think of Obsidian ?
Obs-who ???
It’s obviously an ore mum , what’s your favourite ore.

Most bedtimes with Ollie start something like this , even when he takes his melatonin he can go on forever.
At night when he’s tucked up in bed , supposedly settling down , he has millions and millions of questions.
I will be honest I didn’t actually have a clue what obsidian is , I even had to use google to find out what ore was ( accompanied by much eye rolling from Ollie )

We talked about Ore. Googled all the different types , most of which Ollie knew) Learned about them , which led to Ollie asking about coal mines , where are they , do we still have them in our country , what happens when they run out?
I showed him ( on google) about the Aberfan coal disaster. Which he found very interesting , and then somehow the topic has gotten on to vaccinations. Who has them ? Why ?
Is there a link with autism ?
We were then talking about Bill Gates and his polio vaccine programme. Ollie then wanted to check on the richest man in the world. He remembered that last time we checked it was a Mexican businessman , with Bill Gates in 2nd place , but apparently Bill Gates is now at the top.
From there we talked and learned about the poorest country , Pluto ( because poor Pluto is no longer a planet ) , then space because ” all of space is just so amazing ” and much much more.
This was just one night.
Every night is the same , and the thing that amazes me even more than the fact that Ollie wants to know about all of this stuff is how much he already knows about all of it.
Ollie is an absolute sponge. He just needs to hear something or read something once to remember it forever. And he had a huge thirst for knowledge. I love how curious he is.
And although it’s exhausting keeping up with all of his questions every night I am continually amazed by him.

As for me … All I can say is thank God for google.

The one where Ollie is going to hug me even when he’s a stroppy teen

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Ollie pointed out that in four years he will be ” what they call a teenager ”
I’ve had a bit of an evening with ‘ teenagers today , banging and slamming things and shouting at me and blaming EVERY thing That EVER happened on me , so Ollie said that he’s sure I will probably annoy him when he’s a teenager and he will probably slam things and sometimes get cross but that he will ALWAYS still love me even when he’s cross.
I said to him that one of the things that mums of teenagers love the best is when their kid gives them a hug and Ollie said well obviously I’m going to hug you every day ….. Even if you’ve been moany.

I love that kid so very much

Tourette’s is no joke

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*sigh*
I had this same rant a couple of weeks ago , well , not this actual rant but it was about the same subject.
Fighting ignorance is a long fight and so here I am again.
The thing is , the thing that’s really riled me is that so many people ( so many) think Tourette’s is a joke.
Well it’s fucking not. that’s not me having Tourette’s there , that’s just me swearing because swearing isn’t ‘ like having Tourette’s ‘
A couple of weeks ago it was the ” find your Tourette’s name “crap that I kept seeing on Facebook. But it’s not just that it’s those pictures that say ” talking on the phone to someone with kids is like talking to someone with Tourette’s ” no it isn’t !! and those that say ” since having children I’ve developed mild Tourette’s ” no you haven’t !
Nothing is like having Tourette’s ,
Tourette’s syndrome is a neurological condition (affecting the brain and nervous system) that is characterised by a combination of involuntary noises and movements called tics.
( taken from the nhs choices website)

It’s uncomfortable and painful and often embarrassing. It’s frustrating and upsetting .
Sometimes you need medication to make it less so.
That’s what it is.
It isn’t funny , it’s not a joke , it’s not trivial.
Not everyone with Tourette’s swears. It’s much more than that. It’s words , noises , sounds , movements , jerks , spasms , tics . Randomly , constantly .
Swearing a lot and then saying ” it’s like I’ve got Tourette’s ” is ( in my opinion ) disrespectful to people that do have it. It also shows a great deal of ignorance about what Tourette’s is.
I have two boys with Tourette’s. We don’t sit here with a chip on our shoulders crying because of the tragedy of Tourette’s , my boys will often laugh at their own tics but they do have Tourette’s and that’s how they cope with it.
I don’t get annoyed about this because I’m bitter that my boys have it , I get annoyed because of ignorance .
Making jokes about Tourette’s when you don’t have it , have no experience of it and don’t even understand it and comparing trivial stupid things to it are part of the reason why people don’t actually understand it and why people think it is just a trivial thing .

It’s not funny.

On a mission to get a school , but which one ?

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My stupid anxiety is creeping back up on me , and Ollie is unsettled. Tic’ing more and generally more ” autistic” if that makes sense.
I know exactly what’s the problem. And so this next week my mission is to have a final answer by the end of the week.

The thing putting me and Ollie on edge is that we applied to the school on our street 4 weeks ago. It apparently takes 10 days , we also listed other schools , both local. We’ve heard nothing as yet.
All the talk of preparing Ollie is beginning to annoy me. What’s the point in practicing going to the nearest school “g” if he gets “a” or “sh” it’s unsettling us both.
Most frustratingly I know for a fact that all 3 have spaces in Oliver’s year.
Despite putting a preference on the application form I’mtorn between the 3 schools

• g , this is on my road about 8 houses down from mine. Obviously a huge bonus !!
It’s a good ofsted school. It has it’s own swimming pool.
Apparently good SENCO and sen provision ( not seen proof of this yet )

•sh is a fantastic school , 10 minutes If we take a short cut , 3 bus stops in crappy weather. lovely grounds , good sen but it’s Roman Catholic , I’m not against an RC school at all but I worry about how much science they teach. My kids are natural scientists. Also I worry about autism and theology side of things. will Ollie get his Head around the theology.
I really like this school though :-/

The third school •a is a little further ,4 bus stops away , or a twenty minute walk It’s a 1 form entry school making it the smallest of the 3. It has an sen classroom only for students with statements ( Ollie has one ) and pupils are able to access to both the main stream classroom and sen classroom as much as they need / can cope with. It’s a smaller building , newer , in amazing grounds.

I’ve decided I cannot wait any longer , or expect Ollie to wait. I’m going to visit the three of them this week , with ollies statement and I’m determined to end the week with a place for him.

I just need to get my head clear around which I prefer , I know which Ollie prefers and his choice surprised me.

this week I’m on a mission. wish me luck

” I don’t know “

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Ollie has a new tic.
A new vocal tic. “I don’t know ”
His vocal tics come and go , they change , some go ,some come back , Ollie is kind of used to them. A word comes out of his mouth , it doesn’t mean anything . Tics !
But this newest one “I don’t know ” is proving to be frustrating .
Every time he says it he wonders what it is he doesn’t know.
And then he wonders why he doesn’t know what he doesn’t know .
And then he’s sure that there must be something he doesn’t know if he keeps saying it. And he gets frustrated ,And annoyed ,And upset .
And then he gets over it
And then he says it again
“I don’t know ”
Round and round it goes.

The one where I’m a mutant mum but could possibly get a part in Eastenders

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Ollie couldn’t not settle down at bedtime tonight. We had forgotten his melatonin and for some reason he was completely hyped up as if he’d drunk 4 strong coffees.
He paced the bedroom floor for a while , sat on the bed with me talking gibberish and employed all of his delaying tactics such as needing to say goodnight to the cat , again and again , saying goodnight to the dog , checking what leanne was doing down stairs.

After a while he sat on the bed and said ” mum the problem is , I can’t settle , I want to go downstairs to Leanne but mum you are all being nice now and I know that when I go down and dont come back up you will mutate and come down like a mutated mum saying ” come on Oliver get your butt upstairs right now – with a cross face on , so what am I supposed to do mum ?’
He then did an impression of me telling him to go to bed and we laughed because I said it made me sound like I should be in Eastenders.

It did make me think though , perhaps I do go a bit fish wife when I’m frustrated with him not going to bed ( in my defence it’s usually midnight by the time I’ve got annoyed with him ) I’m going to think more about how I let him know I’m cross and really want him to do as I ask without looking like I’m auditioning to be Bianca Jackson’s long lost twin.

We were laughing now ,I’d said I’m an old age mutant ninja mum to which Ollie kindly replied ” no mum you have a few years till you are properly old ” humph !!! so I said ” oh Ollie you’re such an adorable little rebel” bad move , cue wibbly lip , tears , sniffles ” you been mean to me mum ” because rebels break laws and obvs Ollie doesn’t break laws ( Oliver’s words there )
Reminiscent of last week when , in jest , I called him a silly mongoose.

• I should have quit while he was laughing
•ollie doesn’t get joking / banter , at all , EVER. I should probably stop being funny.
• Makes a mental note to not ever call him as daft as a brush or a flamin galah