Me and my girl and boy, raising awareness and acceptance of autism

Archive for the ‘disability’ Category

Don’t forget young disabled adults

I look at D and I worry for her future. In an ideal world she’d spend her preparation for adult life in the family home, find a partner, get married etc.

In reality, as much as I’d like to envisage that, I can’t see it happening.

Which is why this news story has concerned me “Disabled people “could be forgotten” amid social care reform”, click here to read the story.

A quote from the story “nearly 40% were failing to get enough help to ensure their basic needs, including eating properly, washing and dressing were met.”

As D’s mum, of course I’d always like to be around and physically able to help her, no matter where she was living. But what if I couldn’t? Through illness or worse.

The eligibility criteria will only tighten as this Government forces more cuts through.

Will the disabled adult generation of the future (and now) be granted a secure, dignified way of life? I’m doubtful.

THAT meeting and not being understood…

I had a rather awful meeting with D’s OT assistant on Tuesday. It was meant to be with the OT herself but she phoned in sick five minutes after (yes, after) the meeting had been due to start.

Before I start, obviously this is only our experience. There are some wonderful, empathetic OTs helping special needs children and their families, ours – I would hope – is in the minority.

Our meeting was one that had been due to take place in July 2012 and the report we discussed was one that was written in July (following a meeting in June) but we only received in December 2012. This followed discussions at D’s statement review querying where the report was. So, we hadn’t received it, nor had school (you can draw your own conclusions from that).

I was apprehensive about this meeting prior to it because at the June meeting, the OT’s first words to me were “if you do not let her walk, we will not be helping her”. Let? And it was not said in a “how can we help D?” way, it was demanding and “it’s my way or the highway”. She did not take into account D’s severe anxieties and when I said that she does walk when relaxed and comfortable but when anxieties take over, the buggy is a safe place, OT suggested that D has a “safe hat” instead. I said I would consider it in the future.

Anyway, the report came out (eventually). Very critical. The insinuation was that I force her to use the buggy, that she has no anxieties in school so why should she have outdoors? That there is “no reason noted to use buggy to and from school”.

I went into the meeting on Tuesday feeling strong and confident that I was going to voice our concerns, primarily that:

The buggy is used because of D’s severe stranger anxieties and the fact I don’t drive. If we didn’t have a buggy, I would not get anywhere.

If I forced D to walk – remembering we have to go to T’s school first – she would be bolting everywhere. She cannot tolerate strangers in front/behind/alongside her. Not an ideal scenario walking towards a busy mainstream school. Yes, she does get stared at, but there would be far more if she was bolting across the road.

When D bolts, it’s sudden and fast. I only just prevented her from bolting in front of a bus once, probably one of the most scary moments ever. Thankfully the bus was slowing down coming up to a roundabout.

So, we started going through the report, but the feedback we were constantly getting was “she’s fine in school, she walks about, there’s no problem”.

And then the questions started:

Where did the buggy come from?
Your paediatric doctor referred you to the Wheelchair clinic?
Who was this, when was this, where was she based?
Do you access extra-curricular activities for D? What? When?

The inference being over-protective mum.

I started saying that my priority is to keep D safe. Of course I’d like nothing more than D to be a girl who happily skips home alongside me, not worried about her anxieties, an NT child…but the tears started, because I wasn’t being listened to and it was frustrating, very frustrating.

The additional things I’d wanted to say:

People who bring their children to school by car and bus aren’t criticised.

I see other parents at the weekend, with their autistic children in SN buggies, I doubt – because they are not seen using one – they are criticised.

We get to a set point before arriving in the school grounds that D knows she gets out to walk and similarly going home. Of course if she wants to walk further she can (I don’t force her) but as I’m constantly risk-assessing I will ask her to walk holding my hand/arm.

So, Hubbie and I left the meeting feeling like we’d got no further really and that once again, because you can’t see autism or related anxieties, they’re not being accounted for.

And this is a statemented child we’re talking about.

We have another meeting in two weeks. I’m formally documenting my concerns before then but I really can’t see the next one going any better.

But I’m going to try and go in with an open mind…and not cry!

#team365 – Our Mile today for Autism

D’s off school today and T’s school is finishing early.

We’ve done a Mile for Autism this morning, probably over a mile.

Here we go:

Once T was dropped off this morning, we trudged through the snow (which wasn’t very heavy at 9am) to get some supplies. D is very partial to crisps – hence my wordpress name – and it would not be good if we ran out!

It was the ideal environment for D to be in and she’s walked the majority of the way there and back – zero traffic around, so no noise and virtually no people. She’s also been very excited by the snow and she’s been throwing lots of snowballs!

Some pictures:

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The snow was much heavier after a couple of hours at the shops. It was busy up there, people panic-buying and D spent the time snuggled under purple monkey cuddleuppet in big buggy, playing on my phone.

She walked all the way back, really enjoying the lack of people and traffic again, plenty of snow being thrown about and she made a snowman as soon as we got back (all her own work).

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Very proud of D for walking today, ideal sensory environment for her, shame it gridlocks the country though.

For more information about “A Mile For Autism” and if you’re able to travel a mile and assist Charlotte, please click here..

Thanks for reading, comments/RTs/shares as ever welcomed Jx 😘

Coping strategies…not “growing out of Autism”

Sometimes an article is published that you read and think “did anyone actually research this properly?” and “oh dear, this really isn’t going to help”.

Yesterday was such a time. An article published by BBC Health Children may “outgrow” Autism.
(Click on the link to read) but below is a sample from the article:

“While not conclusive, the study, in the Journal of Child Psychology and Psychiatry, suggests some children might possibly outgrow autism.

But experts urge caution.

Much more work is needed to find out what might explain the findings.

Dr Deborah Fein and her team at the University of Connecticut studied 34 children who had been diagnosed with autism in early childhood but went on to function as well as 34 other children in their classes at school.

“Although the diagnosis of autism is not usually lost over time, the findings suggest that there is a very wide range of possible outcomes”

Dr Thomas Insel
Director of the National Institute of Mental Health
On tests – cognitive and observational, as well as reports from the children’s parents and school – they were indistinguishable from their classroom peers. They now showed no sign of problems with language, face recognition, communication or social interaction.”

As the parent of one (possible two) child(ren) on the – extremely wide – spectrum, this article concerns me. Again, this is people trying to “cure” autism. I wonder if its motives are monetary.

My daughter is in a special needs school, with a statement, because she needs to be. She could not cope with elements of mainstream school – the sheer number of children in class with its associated sensory overload, the class itself (she did most of her work at a desk in the corridor) and the play times – children running past her, shrieking, playing, doing what NT children do in a playground. She could not access the curriculum at all at times – despite a full-time TA allocation – and this meant that emotionally, mentally and socially she was further and further back from her peers.

I used to childmind a girl in D’s class and the differences between their levels were extremely vast, and not just the obvious. Occasionally the girl would do homework at my house and hers set was many levels above D, it used to make me feel very sad for D. It was an immense relief when she was statemented and we had the choice of a special needs school for her.

That was the best decision ever. It was a hard decision to make, Hubbie and I had to look beyond her immediate needs and consider long-term. Did we want her to be in an environment where she would ultimately get GCSE qualifications, but would she be physically and emotionally able to access mainstream? Or did we want her to be happier in a more autism-friendly environment, not necessarily leading to qualifications but gaining life skills? It was a no-brainer really, we had to consider D’s happiness.

And she is happy, on the whole. There are days when she doesn’t want to go into school, there are days when I pick her up and she’s absolutely furious that, many hours before, someone had brushed past her lightly and it hurt her and she’ll store up that emotion she felt at the time (hurt, anger and frustration) and let me have it! Sometimes physically.

So, does this mean she has “outgrown autism” or will in the future?
No. She is coping. Smaller class sizes, a higher ratio of staff to children and a very (on the whole) low sensory environment have meant that she copes. Brilliantly enough at times to participate in a school play (whereas in mainstream she wouldn’t even manage to go into the hall, let alone perform).

Contrast that happy, confident girl at her school performance in December (click here to read) to when we’re in town shopping. The sheer volume of people bustling past, the music blaring out from the shops, the smells etc and she is an extremely anxious child, she is overloaded sensory-wise. Something I tried so hard to explain in my meeting this week, something that just wasn’t being taken in.

I am so proud of her every day, but I worry for the future. Worry that articles with their inflammatory headlines do not help recognise that autism is a life-long condition.

Thanks for reading Jx 😘

I found a thread on Mumsnet which was interesting regarding this topic, to view it click here.

How do I do this?

Sometimes I sit and think and wonder how I can help raise awareness of the autism community more, I have a vested interest with one – maybe two – child(ren) on the spectrum.

Today is one of those days.

Originally I figured the best way to do this would be to blog, as truthfully and honestly as I could. Showing the good times and the not-so-good. Hoping that people would read, empathise and share.

And they do. And I’m so grateful for every RT, every share, every comment.

But I feel like I need to do more. But I don’t know how.

I’m not a stand-up-and-tell-all person.

I’ve tried emailing magazines, referencing the blog and asking for an inclusion. About 90% didn’t reply and those that did said they “don’t accept unsolicited work”. Back to square one then.

The one magazine that, unprompted, said they would publish something didn’t.

I sometimes wonder if I’m being too optimistic when members of my own family don’t understand aspects of the spectrum. And don’t seem to want to. If they won’t, how can I expect others to?

It discourages me but then I look at my beautiful children, genetically programmed with their traits and quirks, and know that I want them to grow up in a society that isn’t too quick to judge; that will accept they have a disability which can’t be seen and that even though there are generalisations of individuals, they are beautifully unique.

So, I don’t really know the answer yet but I do know that I’m carrying on, doing what I’m doing. I have to, for them.

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Explore Your Senses Company – Product Review

One of the great things about connecting online is finding out about companies that offer items of interest.

One such company is Explore Your Senses and they very kindly sent me some samples and a catalogue for D, T and I to have a look at.

I’m always very keen to find out about new products that will “encourage children’s natural curiosity to explore the senses – such as touch, sight, sound and smell”. Having a child with heightened sensory awareness (D), it’s also useful to look at toys that will not only engage her, but calm her too.

D’s favourites from what we were sent were:

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From left to right:
Orange oozy tube – the gunge oozes from the top chamber to the one below and then back again once upturned. The consistency of the gunge changes with temperature and we’ve experimented with standing the tube on a sunny (ish) windowsill and putting it in the fridge. Comes in two sizes and four colours, we’ll be ordering some!

Pink liquid visual timer – D really enjoys watching the oil droplets passing through the wheels. Available in three colours.

Blue jump bean timer – Again, D has enjoyed watching the droplets passing through the ridges to the base. Available in four colours.

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The above picture is of a Heat Up Neck Warmer – Gemma Giraffe.
I think this is D’s favourite. We don’t use the neck warmer element but she really enjoys wrapping the giraffe around her neck and feeling the weighted benefit. I’ve also encouraged her to bash something soft with it when she is overcome with anxieties and we’re at home (only something soft things and not people!)

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There is a vast range of items contained in their catalogue. The index at the front is very useful and easy to follow.

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Explore Your Senses are on Facebook and Twitter (@exploreursenses) or by telephone 01535 662812.

Disclaimer: we were sent some samples that had previously been opened and used for photographs. I have not been paid for this review.

Happy New Year – our “Mile for Autism” #team365

It’s nice and sunny, a New Year and it’s finally decided to stop raining. We decided it would be a good idea to burn off some Christmas calories and do a “mile for autism”.

If you’re not familiar with this, please take a look at @clkh_’s blog and if you’d like to walk/run/jog a mile please let Charlotte know/leave a comment below.

Here’s our mile:

Seen off by one of the cats, who’s more like a guard dog than a cat.

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Garden is a tad muddy, think I’ll give the gardener (moi) some time off until it dries out a bit.

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This stream is normally very very shallow, last week it was over-flowing into the road. Never seen it so high.

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Past the play area:

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This was the start of our mile, we were going to walk all the way around the lake near us and feed the ducks.

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Off we set, D happily going on ahead, she likes it when there’s no other people around.

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Past the tree that thinks it’s a mushroom!

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A quick pit-stop at the bench made from another tree and then more duck-feeding:

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Tree shot!

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Nearly half-way around:

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Water gauge and “hello ducks”!

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More lake shots, we’re so lucky to have this close by:

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Wonder if he caught anything?

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Entering the woodland bit which means we’re nearly done.

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D’s wheels needed a good wash, they were very muddy!

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Nearly home..

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Please either leave a comment below if you are able to help Charlotte or contact her on twitter at @clkh_

Thanks for reading, please use the share buttons below to help raise autism awareness Jx 😘

Bye bye 2012, Bring It On 2013!

So…we’re in the last day of 2012, a time for reflection, a time for looking back and moving forwards (which coincidentally was the title of one of my first ever blog posts).

Of course, it (civilisation) was all meant to be over on Friday 21st December – times varied according to which radio station/TV programme you watched. I can imagine some people being extremely scared and worried and the only true beneficiaries of this prophesy were the inhabitants surrounding a “chosen” mountain from which UFOs would supposedly take off with a chosen few – there must have been journalists supping a fair few lagers on expenses – and direct descendants of the Mayan tribe itself. It spoke volumes about society today when one of the tribe broke off from his chanting to take a call on his mobile!

Personally and in a blogging capacity, I’ve learnt a lot this year. My recent post for Groovy Mums detailed my personal highs and lows of 2012. As a special needs parent/carer and blogger I am so so glad I connected with parents/carers/individuals on the spectrum, I have learnt so much from everyone and individual insights/tips/support are invaluable.

I’m going to include my “Music Monday” in this post too, as it’s very relevant. Life is a roller-coaster by Ronan Keating. I made Hubbie laugh by asking him to guess it and as a clue I said “it was from when we were courting” – can you tell I watched Downton Abbey recently?!?

Life is a roller-coaster (the title) describes parenting SN children to a tee. There is either (for the children) happiness (at the top) or anxieties and sadness (down the bottom), no real in-between. I also like the various spinning tree shots in the video, it reminds me of travelling to see my grandparents, there was always a road we drove down with trees interlocking each other overhead and I always knew we were nearly there. We’d always be travelling in early evening so the sun would be setting through the trees too.

Mushy moment over!

I’d like to mention some posts below that I wrote earlier this year – before I knew how to link!

Some that made me laugh, some that made me cry as I wrote them:

A is for … Autism

What’s in a number…

What Autism means to me

United we stand…divided we fall

Twitter and how it’s helped me – one year on

My favourite post;
The camera DOES lie

My most read post and an example of the autism community working together;
Dear 50 Cent: This is what Autism looks like

And an update to the 50 Cent post:
Dear 50cent – an update

Enough blowing my own trumpet! I want to wish everyone a very Happy New Year and good wishes for 2013, onwards and upwards.

Thank you so much for the RTs, comments and shares in 2012, please use the buttons below if you would like to.

Happy New Year from all the Bluecrisps! 😘

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(Thanks to @epilepsymummy for the pic)

“A Mile For Autism” – Guest Post

Today’s guest post comes from the Eames family, they have walked “a mile for autism” to help Daisy Chain Project and Charlotte’s family.

This is their post:

“Today O, M and I walked our mile for Autism to help Charlotte and her family raise much needed funds for Daisy Chain. We worked out that the distance to O’s school was just over half a mile so we decided to walk there and back for our mile.

Wrapped up and ready for the off!

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Leaving our estate, a cold but sunny day:

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Past our lovely play area:

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Past our local shops, still very much work in progress!

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Arriving at our half mile destination, O’s school:

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Going past the woods on our return journey:

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Nearly home!

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Pleased to have been able to help with #Team365 for raising autism awareness.”

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For more information on #Team365 and if you can help by walking “a mile for autism”, please either comment on this post or contact Charlotte on twitter @clkh_

Thanks for reading Jx 😘

Wishing you all a very Merry Christmas

I’m going to take a break from the daily diary blog between now and 27th December. I will be back then with plenty of pictures and accounts of our Christmas.

There will be a Silent Sunday tomorrow and a “T and D assisted” Music Monday.

I’d like to thank everybody who follows, tweets, RTs and comments on the blog and website. I really do appreciate every one and I hope we’re going some way to spreading autism awareness and acceptance.

It’s time for the Bluecrisps family to relax, spend time together and enjoy the festive season. Wine will be drank and chocolate will be eaten!

I’d like to wish everybody a very Happy Christmas; for those who have lost family members this year or are apart from them, I hope your Christmas is as good as it can be.

I’m off to snuggle down with my family and watch some festive television.

Thanks for reading Jx 😘

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