autismmumsdads

***Guest Blogger***

I am away for the week with my family so have asked for Guest bloggers to write a post relating to Autism in my absence. The wording/presentation of the blog is that of the Guest Blogger and not mine. I really hope you enjoy these blog posts & thank you all for reading in advance.

L x

Todays guest blog is written by A.

Firstly, a little about me and my son. I’ll refer to myself as A, and my Son as C. C is a year 2 pupil and has an autism diagnosis. He is verbal but has all the usual problems you’d expect with a child with ASD (well, saying that, we never really know what to expect one day from the next, do we?!) The reason for the anonymity is because during one particularly heated meeting with C’s school i was accused of bad-mouthing them on facebook (which i hadn’t, and my account is set to private), so i thought it’s best safe that sorry! 😉

From speaking with other parents whose ASD kids attend mainstream school, it seems a common occurance that these schools promise the world then fall short on delivering. Despite recommendations from the OT and Ed.Psych, and promising to make a start on C’s statement, more than a whole year later, it still has not been applied for! It seems mainstream schools bang on about the importance of a home-school partnership and they’re quick to promise putting provisions in place to help the child, yet as soon as the child has a bumpy day or even has a good day, the school feel the intervention is no longer required and withdraws it- leading to more unwanted behaviour and meltdowns. Since starting Year 2, there has been lots of improvement however, though they still really don’t get him & punish him for things he doesn’t understand or cannot help. It feels as though between the hours of 9am-3pm, I have absolutely no say over what happens to my child & he is at the mercy of how understanding and ‘lenient’ his teachers feel like being that day. What they say goes, and as a parent- an intelligent, interested and involved one may i add, i have no input. I’ve even been accused of being “Perhaps a little too quick to make excuses for him”. So, does anyone have any success stories of a tranquil home-school partnership? Is the only way out of the dictatorship to start screaming from the rooftops, or are we, the lowly ASD parents really at the mercy of the bigwigs?

A x

Follow me on twitter: @Metal_Head_Mama

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I was called into A’s nursery today and told the news that his recently appointed 1-1 support has been offered a full-time job so she has taken it and will be leaving.

To say I’m disappointed is an understatement – after the initial worry of whether A would take to her she has been fantastic & A loves her. She has helped to make his days less stressful – when he’s been anxious or distressed she takes him for walks & has developed so many good routines for nappy changing and meal times which had always been an issue at nursery – and all in just 7 weeks.

I understand she must take the full-time hours, she has a young family and her job with A is only 16 hours a week.

I just hope it doesn’t have an adverse affect on his behaviour and nursery routine – as he had really got used to her & was even trying to say her name at times which is a massive achievement for A. She made me feel more confident about A’s future and I was hoping she may of even gone with him into primary school – which if it would’ve been possible – he would’ve had every chance of having a smoother transition into school.

Just when you feel your getting somewhere something pushes you back – its an ongoing battle & its so emotionally draining.

A will be given support now from another of the nurseries SENCOS – as some of you will know the first one didn’t work out – but A is more familiar with the one who will take over the role until he leaves in 4 months time – she cares a lot for A & has always shown a great interest in him.

I hope the saying is true that every cloud has a silver lining.

Please share your experiences of additional support that your ASD children have had/receive below 🙂

L x

A new drama series began on Sky 1 last night called Touch – it stars Kiefer Sutherland who plays the single Dad of a mute 11 year old with Autism – I won’t give much away as I know lots haven’t been able to watch it yet.

It really highlighted the difficulty of communication for a person with Autism and I could relate to the desperation of the single Dad to be able to communicate some way with his son.

A is only very young yet but I do crave the moment when he can speak to me and tell me things – even small things like what he’s done that day or what kind of drink he would like without being prompted by choices.
I feel I’m lucky compared to others that A will copy some words, some times he even tells me he loves me – but he’s just copying the words as I say them – so I know that will be a very proud moment when he finally says that to me spontaneously.

Also the young man in the show wouldn’t allow anyone to touch him not even his Dad which again I could relate with.
Some Autistic children are so sensitive to the slightest touch that its been known it can even cause them pain – depending where is it, I can touch A, but definitely not his head & most times I must warn him before hand.
To want to touch your child Is one of the most natural reactions for a parent – to cuddle them when they are upset for comfort – most parents cannot do this – I certainly try to cuddle A but I get pushed away. I sometimes ask for a ‘squeeze’ and he lays his head on my chest for a few seconds with his body as far away as possible.

Touch also includes, dressing and changing which has always been a massive struggle for us with lots of distraction involved to get it done – sometimes I think if we where naturist’s it would make life much easier (only joking)

I really hope this new show can help highlight awareness of Autism and the struggles that we all face on a daily basis – I did think the 1st show was very emotional in parts but I enjoyed it and have high expectations for the follow up episodes.

Please watch it if you get a chance – Tuesdays 9pm Sky1.

As always comments are welcome below.

L x

Its 4 weeks, 6 days, 4 mins and 56 seconds (as I write this) until we find out which school from the ones we chose A will be attending, but whose counting?!

He only turns 4 in June, so he’ll be one of the youngest.

Its an anxious wait & I’m sure time seems to be going a lot slower than usual…

Due to the timing of A’s diagnosis along other factors which I spoke of in a previous blog ‘Mainstream or Special School?’ A will be attending a Mainstream setting – for how long is any ones guess.

So now I know he will definitely at least be trying Mainstream – my attention and worry is focused upon the amount of support he will receive, A needs full-time support and in our area 25 hours is the maximum. I’ve made it clear that if A doesn’t get full time support I will be home schooling him – I don’t want to but needs must.

A currently has full time support at his nursery so I’ll be shocked if he doesn’t get the same for at school.

I worry of how he will cope at break and lunch times, as well as in class – he struggles to sit for any length of time and has a flitting attention.

I’ve had the idea of saying, ok 25 hours – I’ll only send him for 25 hours then – but I think is all depends on your area/Local authority as some parents I’ve spoken to their children have been allowed to minimise their school hours and work up to full-time hours.

I’ve heard so many bad things about Mainstream schools and their sheer ignorance towards children with Autism – the mainstream schools I have chosen for A are 1. The closest by. 2. Very academically driven – which worries me when it comes to A’s inclusion and well being.

So please don’t hold back and comment about your schooling experiences whether it be mainstream or special needs school….

Thanks 🙂

L x

I’m writing this now barely able to keep my eyes open – I was in bed by 9:30pm last night – that is so early for me.

I’ve had a tough few days with A, he wasn’t well & since he’s been a nightmare. He still has a cough & cold & his nose is constantly running. Never seen him as grumpy – can’t even speak to him without a scream or a dis approving grunt or moan.

Its really hard because apart from the cold – which he’s had plenty of before – and much worse – its a mystery as to why he’s so unhappy. Its horrible to see & I just wish I could make things better – I wish he could tell me what’s wrong. He’s been crying a lot also, for no reason. Clearly irritated by the smallest of things & aggressive at times.

I could literally spend the rest of my life guessing what’s wrong, it could be ANYTHING. I just wish I could spend just an hour inside his mind – I’d love to find out how he works, what annoys him, what things he likes, what he doesn’t like. Why he gets upset etc.

Its so mentally & physically draining – you spend all day wondering why they are unhappy and then thinking of what you can do to make things better.

Does anybody else experience this? And what do you do to calm the situation?

L x

***I will be away between the dates of 23rd March – 30th March – so I am looking for guest bloggers, basically if your interested, contact me @ laurencathcart@hotmail.co.uk with an Autism related post that I will publish on one of those days & if you have a webpage/twitter/facebook I can include your details. I already have some people interested, and blogs ready, so please contact me ASAP***

I never grew up with a Mum for various reasons since I was 5 years old – so to be a Mum for me was difficult even before A had Autism – its hard work, stressful, fills you with worry & its emotionally & physically draining but in the end its so worthwhile and extremely rewarding.

I am the luckiest Mummy in the world.

And so today, I want to dedicate my blog post to all the Mums – especially those that live with Autism & other disabilities.

Its hard being a Mum – even harder when you have to face different challenges each day.

Being an Autism Mum is a constant battle to make sure that your child/ren have the best start in life – that leads to the best life possible – and its not easy.

We deal with IGNORANCE, JUDGEMENT, MELDOWNS, PHYSICAL & MENTAL ATTACKS, SLEEPLESS NIGHTS, CONSTANT WORRY, CONSTANT FIGHTS for the best Support & Education…. Its a never ending list that all forms part of being an Autism Mum.

Autism Mums face a future of uncertainty,

They are their childs voice when they can’t speak for themselves or are unable to communicate –

They are their childs comfort even if that doesn’t include a cuddle.

They are their childs closest companion, their best friends, their safe place.

Autism Mums are brave, strong, amazing, wonderful women, who despite having everything thrown at them, good and bad, remain the most fantastic people I’ve ever come in to contact with.

And I can’t forget Autism Dads, this goes for you too – only its Mothers Day so I’m sure you’ll understand why my sentiments are primarily aimed at Mums 🙂

So Happy Mothers Day to the most wonderful Mums/Mummys/Moms/Mummas/Mothers & Boobys (What A calls me)

Hope you all have a fantastic day!

Please share your comments on being an Autism Mum or just a message to other Autism Mums if you like 🙂

L x

Its approaching that time of year again, when the clocks go forward. Ever since A was 9 months old I’ve dreaded this time of year – will he go to sleep at his usual time? Will it ruin his routine?

I’m dreading it even more this year – A is becoming more forceful when he doesn’t want to do something – I’m so lucky he’s always been a good-ish sleeper that its always a thought in my mind that it won’t last forever.

The time change and obviously the lighter nights can be very confusing for children – especially those with Autism & it can be also hard to continue with a routine, as they don’t/can’t understand why they are going to bed when its still light at night.
Sleep is an issue already for most with ASD so this doesn’t help.

I’ve been considering getting a black out blind but I’m wondering how effective they are and how long it would last, A always climbs onto his windowsill so it would be broke or ripped within a week of being up.

Do any of you have these issues when the clock changes? Have any of you had ASD children who are relatively good sleepers then it all changes because of the clocks going forward or any other reason? Please comment below 🙂

L x

***I will be away between the dates of 23rd March – 30th March – so I am looking for guest bloggers, basically if your interested, contact me @ laurencathcart@hotmail.co.uk with an Autism related post that I will publish on one of those days & if you have a webpage/twitter/facebook I can include your details. I already have some people interested, and blogs ready, so please contact me ASAP***

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