Exciting times for D and an Autism Support Perspective #ThisIsAutism

After a shaky day yesterday, D was full of excitement about her birthday party. It’s still four weeks away but, as the invitations have gone out and responses are starting to come in, it’s all becoming “real” to her, that this will be happening.

As I’ve mentioned before, she spent years not recognising birthdays or festivities so her excitement is well overdue and positively infectious!

It was a long day for D, what with after school cricket and rounders but I was greeted with a very loud “Mumma” and a run-up, her happy mood has continued right through to settling down time.

D being at after school club meant that T and I had our coffee shop visit, he’ll happily take advantage of the free wifi and watch his football videos whilst slurping his cooler drink, it’s hardly a time for conversation (his football viewing is his calming tool) but at least we chat to and from (albeit one-sided at times).

This Is Autism

I wanted to include as many different perspectives around the autistic spectrum during the guest posts in Autism Awareness month and tonight’s post has been written by the Autism Support Worker at D’s SN school.

As with her teacher’s post on Tuesday, it’s positive to know that we’re all “singing from the same sheet”.

A Special School perspective on Autism

“A significant number (but by no means all) of the pupils in our school have a diagnosis on the autism spectrum, with a range of strengths, needs, and personalities. I work in a special school, not because I don’t believe in inclusion into mainstream schools, but because I think we have a role to play.

For some children I believe a special school can be a great place for them to grow and flourish – for some children mainstream is that place. There are no hard and fast rules as to the best placement, as every child and every school is unique.

I realise that we are only a part of the story, the children are with us 6 hours a day, five days a week, term time only. Two things spring to mind when writing that – firstly parents spend much more time with their child than we do, so we should listen to them and support them (if that’s needed and wanted!). And secondly we have to make the children’s time in school count. I hope we do that; we aim to meet their individual communication, sensory and social needs, so that they can access the curriculum, activities and the community more fully than when they joined us.

This is sounding a bit like a school prospectus – that wasn’t my intention, just trying to explain what we do and why. Ultimately I do this job because I want to make a difference – and because I enjoy what I do.”

I’ve mentioned before that D has positively flourished since joining her SN school, it’s good to know that that is widespread.


Who’d have thought? #WobblesWednesday

Wobbles Wednesday

Just when we’d got rid of all the birthday cake (scrummy!), Easter bounces in and with it….chocolate!

Albeit for me a day late because I’d far prefer Hubbie to get me a choccie treat when it’s half price as opposed to the day before. And he did. And it was a chocolate bunny. And it was lovely.

But, back to it! The children went back to school, one yesterday and one today and I’ve had a chance to think. Think about what I’m aiming for (more details in goals).

I had a bit of a mini victory this week, not only am I still wearing my jeans and feeling quite un-sausage like but I tried on a pair of white ones. Me? White? She who always hides always in blacks, greys and purples, me. Tempted to get them but not yet, a few lb to get off first.

And speaking of that, despite the choc fest, I guess it’s been a case of moderation as I hoped because:
1lb off!

My goals for the next week are:

Well, this is more of a long term one but visualising those white jeans on and looking un marshmallow-y in them.

Breakfast: I tend to miss it because our mornings are busy, so aim to have some after the morning school run.

So, that’s my week, with an unexpected bonus, how’s everyone else doing?

We’re back to it Wednesday and a poem from @savvywendy #ThisIsAutism

I love having T and D around in the holidays, love it. There’s always plenty of “Mumma cuddles” to and from D and T has a never-ending quest for knowledge and facts. He is a wise head on young shoulders.
It was nice to see them both head back into their separate schools today.

T going in with reluctance as he was unsure when his SATs where and there is the continued wait to see if our appeal for a school place will be successful; and D, less enthusiastic than yesterday but mega excited because she had her party invitations to hand out.

She had said to me that, if her teacher told her where the relevant classes where, she’d deliver the invitations herself. This made my heart absolutely swell because in her previous (mainstream) school, she could not physically enter her classroom most days due to the busy (for her) environment. Assemblies and school performances were also a definite tool for anxiety and she couldn’t participate. So, progress, definite progress.

It was all change at home time, literally. D had forgotten to bring her swim bag down and was extremely reluctant to head back to class and get it. Sometimes she can accept unexpected change, other days it totally throws her off kilter, today was one of those days. Right from that point on, she was a different girl, an anxious girl, a “I need cuddles but I also need to bolt, to get away”, hopefully it won’t affect sleep too much tonight.

T’s frustrations over his uncertainties have also spilled over so we have had a fraught time.

This Is Autism

Tonight’s guest post comes in the form of a poem from @savvywendy, she has had some pretty major health issues over the last couple of years and 3 out of 4 of her children have autism.

This poem captures autism perfectly.

My Autism Is Just A Part Of Me

What do you see
when you look at me ?
do you see the child beneath
or am I just naughty

To see the real me
you have to look more closely you see
I have autism
I am not naughty

I have problems coping in crowds
and have trouble with sounds
they make me shout and scream
but isn’t me !!

It’s the autism in me.

I can’t speak
and tell you what I think
Yet I can make the Ipad
do things you wouldn’t think

I have a love of lights
and all things bright
I sing and shout
when there is no-one about

My autism is just part of me
there is a lot more for people to see
My love of maps is a lot
for my family to bear

As I can name all the roads just by
glancing at the map,
I even have an argument with my
Dad’s sat nav

No that is ridiculous, it isn’t this way
my way is quicker than what you say
You should have listened to me
And now we are going the wrong way.

My autism is just part of me


Back To It and a Teacher’s Guest Post #ThisIsAutism

Back to school for D and she simply could not wait. I guess she was relieved to be getting back into routine, certainly she was up, dressed and ready for action at an early hour!

It’s been a busy couple of weeks, what with birthdays, new glasses and a cinema trip, she should have had plenty of “News”. I’d written down little prompts for her as she does tend to focus on the here and now. When we do our “best and worst of the week” chats on a Friday, D’s are always something that’s happened within the previous few hours even if something pretty mega has occurred two days before.

T and I have had some T-time as he returns tomorrow, it’s been a day of football facts and stats (from T) and I’m always impressed by how quickly his mind works – this can have disadvantages in that his mood will change extremely quickly.

D was very pleased to see us at the end of the day; a run-up, “Mumma!” and bear hug were all waiting for me. A good day.

This Is Autism

I wanted to include different topics on my nightly guest slot during April and tonight’s is a post written by D’s teacher.

I thought their post would be very interesting as they came from a mainstream environment to a SN school last September and was very pleased when they said they’d write something.

There were many changes that D and her classmates faced in September – different floor location of classroom (upstairs. without parental escorting), a mixture of pupils not necessarily previously put together and a teacher not only new to them, but new to the school. After an initial “teething” period, D has accepted all these changes and more and credit must go to her teacher and their continued initiative.

Having read through their post, I can understand where their empathic manner comes from and it makes for a fantastic read.

From ‘mainstream’ to ‘special’: A very special experience

Autism has been a part of my life for 25 years; ever since my little brother came into this world that, at times, he has blended into well and at others it has been like trying to fit a square peg into a round hole.

From a young age, we always knew he was unique. Branded a ‘naughty boy’ by his Reception teacher, I remember the times my parents would be called into school to talk to the Head teacher in response to another incident. I also remember their relief when after years of fighting his case he was diagnosed with autism and began attending a Special School.

In his early years, I often acted as translator for him as his speech development was poor and adults always seemed to struggle to understand him. For some reason I always knew what he was saying.

It is thanks to my wonderful brother that I find myself writing this piece as in September 2013 I finally realised a lifelong calling and became a teacher in a Special School. And boy, has my life changed!

Having worked as a teacher for five years in mainstream education, I was ready for a change. I had witnessed friends joining and subsequently leaving the profession, such are the pressures on schools these days, passed down from Local Authorities to Head teachers and piled upon the shoulders of the individuals at the bottom of the chain.

If you’re worried this is going to turn into another ‘woe is me’ article, don’t worry; it is positive from here on out!

It is now that I hope to outline why I truly believe that I have the best job in the world.

Firstly, one of the greatest changes for me was the size of my new class.

Having charge of ten children instead of 30 gave me an unrivalled opportunity to really know them. I get to understand what makes each individual child motivated, what learning style they prefer, how their home life impacts on their education and most importantly to know who they are as young people.

The next part of the job that has been a revelation to me is the flexibility I now feel I have to ‘teach’. If a particular part of a lesson is going in a certain direction or if a child raises a question, I have the time and I believe, duty, to follow that line of enquiry and therefore tailor my teaching further to the individual. It is often interesting to talk about ‘flexibility’ and ‘autism’ hand in hand as they are not a usual bedfellow, however, it was more about learning to be flexible with my own ideas of what a lesson ‘should’ be like and move to what it ‘could’ be like to help my children break the barriers to their learning.

Another point of real importance to me is the trust that we are given as educators. In a Special School environment that trust is huge and it is part of my job to earn it. Never before have I created such productive working relationships with parents who desperately want the most the for their children and it is fantastic to share in that common goal.

Finally, it comes down to the children. Each with their own complex personalities, likes and dislikes, senses of humour and voices. It has been a pleasure to learn with them and I hope to continue to learn throughout my career as they continue to teach me how to best teach them.

It is through this experience and journey into the unknown that for the first time in a long while I feel confident and proud to stand up and say: I am a teacher.

And this little girl is very happy to be in their class.


Mixed emotions and “Friendships” by @neiley83 #ThisIsAutism

We’ve reached the end of the Easter holidays for D, she returns tomorrow and T on Wednesday. A fact which he is delighted about, that he gets an extra day off, when it’s reversed and D has an inset day and he doesn’t..he’s not so pleased!

For D and T, it’s been a mixed day. On the one hand, she’s looking forward to seeing her teachers and telling them about what we’ve been up to and on the other, she’s not looking forward to seeing those who aren’t nice to her. Those who call her a “baby” and mock her.

This is the subject of ongoing sessions with CAMHS, trying to give her the confidence and tools to say when things are upsetting her at the time, as opposed to bottling it all up until she sees me and then….boom! Bolt time!

With T, the return to school will mean SATs tests in a couple of weeks and the realisation that it will be his last term at primary school, with no clear indication as to secondary school as we’re appealing the place. It’s a lot of uncertainty for him and on the surface he’s coping, but occasionally he’ll let it out, usually at D.

This Is Autism

Tonight’s guest post comes from @neiley83 and I found it both insightful (from Neil’s viewpoint) and empathetic (with regard to T and D).


“A big part of my childhood and schooldays was having a lot of friends. I had a close circle of half a dozen or so throughout primary school, and a wider less close circle when I got to secondary school. Maybe it’s part of the ASD in me that I felt I didn’t need to go making new friends because to be honest, I find it difficult to go through the friend-making process in later life. I seem happy enough to be making my way though life without the need to continually be making friends.

Matthew it seems takes this to a whole new level. He was diagnosed with autism when he was four and the social minefield that is friendship was huge trouble way back then (he’s eight now.) He had few friends in nursery – if you can say he had any at all. There were kids in his class who liked him, and would befriend him, but you could see that Matthew considered it a complete mystery. He would flit from activity to activity in class – usually when another classmate came over to become involved in the activity Matthew was trying to enjoy. The minute his personal space was invaded, the activity was over for Matthew.

His progression through primary school has shown absolutely no improvement. He finds friendship an even greater mystery than ever. To Matthew, making friends just involves a swap of names. His inability to read social signals makes him vulnerable this way, and its an easy way for those with unfriendly intentions to gain Matthew’s trust. He’s also been stung by people who have been a friend to him in the past. Just a few weeks ago, Matthew was on the receiving end from bullies, one of whom had been a friend in nursery. He came home and said, “He said he was my friend” – he’d learned a hard lesson, but the result has been that he feels he can’t trust anyone. In the hard knocks arena that is school, it has meant he cuts a solitary figure and has denied himself a support network in the playground and classroom. You ask him who his friends are at school, and he will tell you that he doesn’t have any friends. That’s kind of sad.

During the diagnosis process, the area that gave the clinical psychologist most concern was the school playground. It’s a chaotic place where the group mentality rules. A lone person is just fodder for those groups. Matthew tries to join in because he feels he has to – everyone else does it, so he should too – even though he doesn’t understand it. The inevitable result is Matthew being on the receiving end.

Daniel has it slightly better and has a decent sized circle of friends. He has a better understanding of the friend -making process but like Matthew, the whole friendship game just eludes his full understanding. He is quite happy to play with his friends – he has two he’s particularly close to – but is just as happy to stop play in the blink of an eye and go home. He’s lucky that his friends are aware of his “special brain” and remain close to him. Friends and friendship are a vital part of life, and the help us negotiate our way through our lives. Autism – in my experience – gets in the way of that process and its not helping Matthew or Daniel.

My advice to them is simple. When you make true friends, you need to hang on to that. Its hard enough to live our life as it is. Having people that are always there for us is a magical thing. My only hope is that that the boys continue to develop a greater understanding of friendship, and that they learn to appreciate the unstinting support that real friendship can bring.”


Nearly there.. And “We Have Autism” by @womanwithbaby #ThisIsAutism

The Easter Bunny was kind to us this year, aided by D’s faithful Bunny:


As with Christmas and birthdays, D has started to get excited about Easter, but on her terms.

I’d previously seen some bunny-shaped chocolate “eggs” and thought they’d be just perfect for D but, considering she wouldn’t eat Easter chocolate for years because it wasn’t round and there were broken shapes, I thought I’d better check with her (by pointing out them in the shops). Just as well I did, because she did not like them at all, according to her “they’re not proper eggs” and I guess she has a point.

The stormy weather prevented an egg hunt outside (small blue ones for T, small pink ones for D – yes, stereotyping but they like it that way) so it was an indoor hunt, after we’d been visiting. T went off to place D’s and similarly she did T’s. All was well until the intellectual differences between them reared their head, with T getting frustrated that she wasn’t responding to clues. She, in turn, got very upset that T couldn’t find his last egg and she couldn’t remember where she’d hidden it…

With D heading back to school on Tuesday (T on Wednesday), we’re aiming for quieter, calmer day tomorrow, that’s the plan anyway, we’ll see.

This Is Autism

Tonight’s guest post comes from Lauren who’s on twitter as @womanwithbaby and also @SquarePegCIC, a not-for-profit company producing autism awareness Tshirts and bags.

A busy lady and I’m really pleased to be including her post below:

We Have Autism

People say my daughter has Autism but that is an understatement, we have Autism as a family. One person out of a family containing Mum and two children cannot have Autism alone.

Autism is like an invisible field that shrouds our family and whilst I don’t hate it like many others it does affect every aspect of our lives.

A trip out is not simple, will it be busy, will I be able to let the little lady out of her pushchair to stretch her legs, will she be able to escape, will I be able to let her younger brother out while watching her, will there be food there (she is renowned for stealing peoples food and while in SEN situations it’s cute, in a Weatherspoon’s it is not!) will there be any water for her to pour or climb in? This list is endless and often she is confined to her chair for her safety and her brother’s. For the most part she doesn’t seem to mind but as she can’t speak I don’t really know this.

Autism spreads through our extended family who thankfully make exceptions for (and totally accept) their granddaughter/great-grandaughter/niece and the chaos that a visit from us can create.

Anyone who thinks our life is hard because of Autism is wrong and I strongly advise they borrow my NT son for the afternoon if they want to see hard work! It’s simply different, it’s a little less sociable and a bit more thought out but it’s also eye-opening.

We have met some of our best friends who totally accept us and our dynamic because of our diagnosis, I have learnt so much about the world of disability to which I was previously utterly ignorant and even set up a business relating to community which 3 years ago I knew nothing.

Do I worry about the future? Of course but doesn’t everyone? I just worry about different things I guess, I guess the old saying “Different not less” is very apt.


Silent Sunday/My Sunday Photo




A see saw day and “Diagnosis as a adult” by @soundcube #ThisIsAutism

It’s been a day of ups and downs for D, a see-saw day.

One moment, she’s absolutely fine, happily crafting (she has very good fine motor skills and will spend ages twirling and twisting materials) and the next, she’s very withdrawn and in tears. Unable to say what’s wrong for a good few moments, amidst sobs and withdrawal.

When she has been crafting, she’s been making jewellery with ribbons and little crafting gemstones.

Then the “switch” flicks and her mood suddenly and dramatically changes. It’s difficult to anticipate and to manage, but at least we’ve been at home. I wonder if it’s in part a response to noisy and busy situations yesterday.

This Is Autism

Tonight’s guest post comes from Jon, who’s on twitter as @soundcube. He has written about his journey to a diagnosis in adulthood, which I found very interesting to read.

We went through a diagnosis for D at aged 4 and for T at the age of 10, both used different means and tools and I wanted to feature autism diagnosis stories from later on in life too.

Diagnosis as an adult

“It feels like a lifetime ago but it’s only a year ago since my diagnosis of Aspergers syndrome was ‘Konfirmed’. I had an opportunity and I took it with both hands and an open heart. I sat in the hotel the night before unsleeping laying out everything that had lead to this point in a vast timeline, to me this was the ultimate test I would ever face. When I eventually fell asleep dreams were hard and I woke early.

I had always known I was different to most people about me, a lesson sometimes painfully obvious especially during my early years at school. Maybe as early as 4 or 5 at infant’s school I learnt my differences were ‘real’ and expectations at odds with the majority of children I had contact with. I felt I lived in my own world and often retreated to it when things were awkward or unfathomable (I still do) It was the first opportunity I had to mix with other children and by 7 or 8 I realized two things – I could never be ‘like them’ and that I needed to ‘look the same’ on the surface or life became ‘hard’. I thought this may be easy as even then I judged most to be very shallow. I know now this was my inability to see below the surface, beneath the skin or the way they acted or read between the lines of the words they spoke. Its different looking back after 45 years and tracking the way you ‘formed’ and learnt to ‘exist’ in a neurotypical dominated and prescribed social world.

I had other issues at school; I am very dyslexic so this was an easy ‘doorway in’ for teachers and kids to bully me about my writing and spelling as well as weirdness. I went to school in prehistoric times, Still I had gifts, the genetic legacy I inherited wasn’t just one sided. I could remember ‘stuff’ very easily especially if it was presented visually, maybe not often ‘stuff’ that mattered but it came in useful (mostly) but then I could also ‘draw’ – I had dreamt of being an artist since I was 6. I know now I systemised everything then, it’s why I was good at understanding ‘natural systems’ and ‘rubbish’ with understanding people who just seemed plainly unpredictable. The artist was bullied out of me at 11 when a picture I had drawn was torn up in front of the class as I had spelt my name wrong. I eventually mastered some ‘rules’ and survived school and university becoming for my own ‘self preservation’ reclusive and distant but always with the hunger pangs of desire to ‘join in’ being a million light-years away from on the spot reality. I entered into the ‘world of work’ as an home taught illustrator of very complicated books and there I sat as the world turned around me – 3 children and a failed marriage later it was suggested…..are you Aspergers?

I had found out that I was dyslexic at 39 after a ‘suggested whisper’ and having an ‘official test’. I then started after getting my confidence together talking with people and working tutoring other dyslexic Young People as well as making a ‘world of new things’. On one course I ran, one of the social workers handed me a copy of ‘Curious tale’ and said had I ever considered I was autistic. No I had not but reading it made sense. At the same time I discovered that I was a synaesthete, I thought everyone experienced the world as I did but no. I touch time and sound, personify numbers and electrical items and stones are definitely alive. I had always had trouble with ‘colours’ too – yellow disgusts me tasting of mould – this was always troubling and distracting for me as an artist and I often worked in drawing Black & While or photography.

So here I was in Cambridge sitting on the edge of a seemingly foreign bed. The walk in to the Autism Research Centre would take 19 minutes. I knew this as I had been visiting for the previous 18 months working as their Wellcome ‘Artist in residence’ and had got to know some of the staff very well. I was familiar so I was not as anxious as I expect some people would have been. My Aspergers had been recognised and I was in the midst of a project exploring the ‘Autistic way of thinking’ in sound and image. I had met Professor Simon Baron Cohen when I spoke at the same event for a leading Art Science organization at Cheltenham Science Festival in 2011 and he wanted, like me to know more. http://www.artscatalyst.org/projects/detail/jon_adams_konfirm/

The walk in was relatively quiet, I stopped to take a few photographs on the way but was early as usual, made welcome and waited anxiously. Earlier that year there had been an article in ‘The Times’ which Simon and I had contributed to, explained about ‘why a diagnosis’ is often needed where there are ‘issues’. I had said I needed to know not for me but so I could receive the support I needed whilst in work to give my best, something very important to me and necessary. I had been referred for a diagnosis by my GP after careful though and consideration as I had been having issues with my mental health due to ‘trying to fit in’ and becoming worn out.

Then I was asked in, the diagnosis was ‘a detailed yet set conversation’ with someone I hadn’t met before , who didn’t know me which was fine as I knew that was the ‘rules’ as it were. It was a long conversation, a conversation where I found out revelations during the day we spent together. Questions – questions – an entire life history unfolded before me, was of thinking, doing things, it was ‘uber’ comprehensive and complex, digging deep, but I was 100% open and honest as those were the ‘rules’. When we finished I was exhausted but I knew more about myself than I could ever have hoped for. I knew I had made the right choice, finally after 6 years of suspecting and a lifetime of somehow ‘knowing’.

For me it didn’t mean another label, far from it it meant I could strip many away that I had been given against my will over the years – Labels that weighed and sighed and sat on my back. For me it was my ‘Golden ticket’ to be who I should be – no excuses – just a plain liberation when I saw in ink written on paper – Diagnosis (not that I like the word!) is ‘Aspergers syndrome’ – in fact very Aspergers – with the ‘numbers’ to prove it.

Since then what has changed? It still feels somewhat hard ‘existing’ and I still feel that there is nothing ‘wrong’ with me. I don’t feel contained by the words autistic or Aspergers but I do feel contained by others opinions – often said out of ignorance – Something we all may fight against every day, that can make our days long and exhausting. Now I can access support officially, obtain adjustments for others to fit in with me, something I’m not ashamed to say I need. I can also take part in ‘research’ which may help with understanding and knowledge to improve our ‘life experience’ not just weed us out or expect us to change.

Now I don’t feel I have to expend quite as much energy or anxiety investing in ‘polished social camouflage’ to pass ‘unnoticed’ in a world of often ‘expected neurotypicalness’. Now It may not solve everything but it gives me strength to be a ‘Konfirmed’ resident.”


Try hatching a choc-free egg with @TamagotchiUK #ProductReview

Mmmmm, chocolate and it’s an egg-fest on Easter Sunday isn’t it.

But, how about something that lasts a little bit longer? A little electronic friend that can be nurtured once hatched and will give plenty of fun?

I’m talking about Tamagotchi Friends, these have been re-launched at a reduced price with some pretty funky designs for Easter.


We were sent a whole bundle of goodies to have an Easter party and try out the new Tamagotchi Friends.


I remembered these from when C was about 6, they were the “must have” at school, with little buttons to feed, clean and care for them.

The newer versions have all this and more! These Tamagotchi’s can date and get married! The “bump” facility also means that T, D and their friends were able to send and receive gifts, visit the other’s Tamagotchi, text each other and even get married (something which the girls loved!).


There’s also a Friendship Map, which is a good way of indicating to children that some people won’t necessarily get on with others. The nurturing aspect of the game is a good life lesson too.


Another good aspect of the toy is that it’s very portable, egg-sized so perfect for little pockets and bags when out.

T, D and their friends really enjoyed testing out an alternative to Easter choc, as with everything there is a competitive element but that’s how we roll.

Tamagotchi are available at the reduced price of £19.99 from £24.99 whilst stocks last at the Entertainer, Argos, Toys R Us or Smyths Toys Superstores.

Disclaimer: we were sent Tamagotchi’s and related goodies for the purpose of this review, our words and views are our own.

Bank Holiday (?) and “Bobby’s story” from @handmchallenge #ThisIsAutism

I guess the Bank Holiday today means different things to different people: for our (noisy) next door neighbours it’s barbecue time, with children jumping and shrieking on their trampoline, shouting at anything and everything; for others, it’s a trip to a DIY store for bits and pieces and for some, it’s a road trip to the beach.

For us, it’s “business as usual”, routines, anxieties and calming mechanisms. We did go out visiting and stopped off for a costa-to-go on the way back, there was a religious ceremony at the village centre which was heavily populated and the coffee shop itself was absolutely heaving. We weren’t going to stop in there anyway but the noticeable cringing of both T and D made it definite that we wouldn’t.

All very glad to be home and the rest of the day has been thankfully calm (at least on our side of the fence).

One tool that both T and D find very useful from both a calming and an educational point of view is their iPads. D in particular will happily sit in her buggy, tap-tap-tapping away, oblivious to the hustle and bustle around her. I blogged about this here.

Hearts and Minds (on twitter @handmchallenge) operate a wonderful scheme where the collection of mobile phones can be exchanged for an ipad, providing a much-needed communication, calming and educational tool to children with autism.

Cheryl has written tonight’s This Is Autism post about her son, Bobby and how Hearts and Minds have helped and continue to do so.

Bobby’s story

“Living with autism is difficult to describe. I often see reality show contestants talk say all the usual clichés – it’s been a rollercoaster, I have been on a journey, I found myself. I find all those clichés actually mean something to me and my family. Every day brings its own struggles and rewards.

7 years ago I gave birth to a beautiful baby boy with blond curls and blue eyes. He looked perfect in every way, passed all his health tests and all was good. But from the moment he was born he was different. Here was this gorgeous child who wouldn’t sleep and wanted to be fed constantly. After spending three weeks in hospital suffering from exhaustion I felt as though I was a bad mother who didn’t know what she was doing, I just couldn’t get it right. I blamed myself for his sleep and feed issues. When I asked the doctors and the nurses I would be fobbed off. So off home I toddled with new born in tow ready to face whatever came my way.

Still 6 months later, my boy still wasn’t sleeping and wanted to be fed constantly, probably getting a maximum of 3 hours sleep on a good night, he still had made no effort to try and roll onto his belly or to crawl. That’s when the questions in my head started to magnify. I put it down to lack of sleep and overthinking. When the health visitor appeared I would ask why my child is so different, why wasn’t I coping, why couldn’t I get him to sleep? Once again blaming myself as from the way the health visitor looked and spoke
to me it obviously was.

The lack of sleep was starting to take a toll on my relationship with my partner and my other two children. They couldn’t understand what was up with me or Bobby. As Bobby got older still his developmental milestones were not forthcoming. He was one and still was not crawling.

It took 6 months to convince my GP that I needed to see a paediatrician. It was such a relief when finally meeting her and I was able to voice my concerns while she observed my son lining up bricks in an orderly fashion. I told her my concerns were Autism and she told me my concerns were valid.

That was the moment it was confirmed for me that all the thoughts going through my head were right.

Even though I had it confirmed I still then had to go through nearly two years of tests to get an official diagnosis of Classic Autism and I was one of the lucky ones. At the age of three he had an early diagnosis even though he could have had it confirmed so much earlier and then strategies could have been put in place to help him develop.

Today Bobby is 7 years of age, he still has no understandable language, he still smears his faeces across my walls, and he still has meltdowns in supermarkets. It is the judgemental looks of other shoppers that can really ruin my day or the snide comments about his bad behaviour. I have to calmly inform people of his autism and many people think it’s an excuse. They can’t understand that the sound of the freezers might hurt his ears or the lights might be too bright or simply that it is all too much of a sensory overload.

Bobby can spend hours trying to rip his skin of himself as it hurts him, biting into his hand so hard he will probably have permanent scarring. He can often try to hurt others and will feel no empathy for the other person no matter how hard they cry.

Saying all that, Bobby can be the most loving, joyful child to have around.

With services being cut back and help depleting once you have the diagnosis I needed to turn to someone. I needed to pick my battles. I decided to go for speech. That’s when I approached hearts and minds and looked into their iPad scheme. I managed to collect 165 phones within 6 weeks and received an iPad within a couple of weeks.

When I first received Bobby’s iPad I was sceptical to it working. After much practice Bobby was finally able to communicate with his family and the outside world. He could tell me when he wanted his dinner or how he felt. The iPad never leaves his side now.

With Bobby being able to communicate, it changed the whole dynamics of my family. The violent episodes are getting less, he has stopped harming his big sister and the home is generally calmer. I picked my battle very carefully and won thanks to hearts and minds. I have my family back and we work as a unit once again.

Bobby is more willing to go on day trips with us as he can tell us if he feels anxious or scared, or if it is simply too much for him. Hearts and minds are always on the other end of the phone if I have a problem or some advice. If I need help with his school, therapists, or benefits then I can access their advocacy service any time. This is invaluable to me as there is always a problem.

Thanks to hearts and minds I have my life back and feel that I am not going through this on my own. Living with autism would be so difficult without them.

As for Bobby we take each day as it comes, facing each challenge head on but now we are positive and our lives wouldn’t be the same without him. He is centre for my family and I feel proud of him every single day as he makes a small step in his achievements and all that he has to overcome.

Autism isn’t a journey that I planned but I sure do love the tour guide.”


(I love the last sentence of Cheryl’s post, I have a similar phrase on a little wooden sign by our front door, picture above).