bigbadbarry-toyrobot

[bigbadbarry-toyrobot]

I started writing this post back in July, so a bit out of date now, but though I best post it since I’ve spent nearly 3 months writing it! Ha!

As a result of this blog, something that started as a sort of secret diary to empty my head, I’ve met people in the flesh and online, some that live near and some on the other side of the world, some that are at a similar stage in their journey through parenting a child with additional needs and some that are just starting, I often get asked for advice about school and how it went for Bailey and I’ve been meaning to write this for months, so here it finally is, a bit about our first year at school and the things that worked for us.

The start of school for any parent is scary, even more so when your a parent of a child with additional needs, will they love school? Will they hate it? How will you all cope with this next step? How will other children react to your child? What will the parents think of them? Will he be classed as the naughty boy? Will people gossip about him; us behind our backs? Will he be included, will he make friends, will people tease him and he’ll be oblivious, the questions circled round and round my head for weeks and months, we worried, though we shouldn’t have....my sons school was recently graded outstanding, I myself have been through 3 ofsted inspections the most recent this year, it isn’t easy and I can honestly say that any grade a school gets today is mostly a fair representation of how the school works and what it rightfully deserves. We can all pull an outstanding lesson out the bag with a bit of effort but my sons school was graded outstanding in all area and I have seen first hand how outstanding their SEN provision is, in particular the schools senco has been a dream come true. She has made Baileys transition from nursery fairly smooth, there have been some bumps along the way, some pretty big ones in fact, a broken nose, some tears; mostly mine, I’ve bitten my nails down to nothing with worry and Bailey also did a bit of biting himself, which fingers crossed is now very much in the past.

The school reacted accordingly and have put in place the support that he is entitled to, deserves, and what is essentially needed for him to be in main stream education, where he currently most definitely should be. He has 1:1 support and bunch of clubs and interventions are used to support him and other students across the school that need that bit of extra help. Baileys has had Lego therapy, lunch time games clubs, SALT and a specialist autism teacher come to support staff because as a teacher you pretty much get zero training for teaching kids with ASD; ‘read that PowerPoint slide guys, now go teach’ - that’s a whole other blog post though...I only finally feel confident teaching autistic kids, because of Bailey, because I understand that what works for him won’t work for another kid, like most kids! Any way as a teacher I thought I had a good understanding of what he was entitled to and how to get it, but it’s often different from borough to borough, I can’t recommend enough getting a good understanding of what your child is entitled to, with or without a EHCP. An amazing book for this is a book called ‘How to raise a happy autistic child’ I wish someone had given it to me when he was diagnosed, its full of what you need to know for school, unfortunately I discovered the book after we’d been through it all. However we found our way and it’s not been easy, somthing that did make it a little easier was that we requested termly meetings with Baileys SENCO, the school doesn’t really have to offer that unless they have a EHCP, however these meetings were hugely beneficial, to discuss his progress but also just to immediately act on what our next step would be. We are still in the process of trying to get his EHCP, a task I’ve had to take on myself again...we have secured him a PRA- pupil resource agreement but this doesn’t even slightly cover the cost of his 1:1. There are a tonne of acronyms used in education even more in SEND, it’s extremely useful getting to know what they all mean, it’s stops you feeling so lost and definitely gives you a bit more confidence when talking to professionals because unfortunately some will talk to you like you are an idiot or fob you off, I’ve had the Borough SENCO not only take it upon themselves to make decision that had a negative impact on my sons education but also lie to me about it, so getting a understanding of education lingo is massively beneficial!

Though school has been brilliant it is decisions that we have made as a family that have also greatly impacted on his first successful year at school. We were unsure about immediately telling people he is autistic as it’s just a small part of who he is, we were scared about creating a label for Bailey, we didn’t want him to just become the ‘Autistic boy’ but equally we didn’t want people to label him the ‘naughty boy’ because he actually isn’t, being naughty generally isn’t in his nature, but even now through lack of understanding other children label him as naughty.

When Bailey started school his language delay to the untrained eye wasn’t so obvious, it still isn’t obvious unless you know what your looking for or you spend a great deal of time with him and start to spot the repetition. However language is something that is difficult for him, early in reception he found it difficult to express himself verbally and unfortunately for us and him, he took to biting as a way of keeping unwanted attention at bay...someone tickled him too much and he didn’t know how to make them stop, so he bit them, someone snatched a toy and he bit them, this happened 3 or 4 times, not loads but enough to put him on peoples radars, parents were called and I was worried it was going to start the gossiping, the stay away from that boy, he’s naughty conversations, so we made the decision that we would be open and honest and share that Bailey is Autistic, and frankly it was one of the best decisions we made. Parents mostly have responded well and I know as a result many families are talking about neuro diversity with their children and that’s fantastic.

Last April during Autism awareness week we set up Baileys just giving page, we shared it with his class group and his SENCO who then shared it with the whole school. A bunch of Baileys school friends came and supported him and it was incredible to see his friends and their parents showing their support, it was around this time in the year that the worry started to ebb away for me, I mean it never really goes, but things were starting to click into place for us, for him. He loves school and loves his friends dearly, more than they are probably even aware.

Bailey was sponsored across the school, the school shared his just giving page in the newsletter for about a month, which obviously got people talking about autism and neuro diversity. I worked with the senco and we talked about ways we could help the children gain a better understanding of what it means to be Autistic, they delivered circle time across the school tactfully and Bailey even delivered a little presentation about his walk during a whole school assembly. Bailey still struggles to tell me about his day but occasionally I hear bits through his teacher or from his friends...usually the girls and it always has me close to tears, he is so well loved and he’s done this all by himself by just being him , up until recently no one knew who me or Sam were, as he goes to breakfast and after school club we had limited contact with other parents, but as he’s constantly invited to parties I’ve got to know some parents now. I often get stopped and people say ‘oh are u Baileys mummy?!?...ohh he’s so sweet, Or I love him so much, I think being in the choir has also made him more visible to the parents and other kids of the school, which has also been a good thing, as he now has a bunch of friends across the school. I also think it’s been really good in supporting him with taking part in groups, making friends and has given him more confidence, though he’s always been pretty confident. Baileys reception choir teacher is also lovely and has gone out of her way to make sure he has a role in the choir, even though his participation is alway a bit hit or miss, the fact that he actually sings is incredible as he never did before he started school not even nursery rhymes. Baileys reception year choir dedicated and donated all the money they had raised from their first public performance, (which Bailey picked his nose the whole way through) to his just giving page, this took the total money he raised to over £1000.

The first year has not been completely smooth sailing for us always, and I’m not going to lie it can be tough and hugely over whelming juggling family, work and school, despite that Bailey has loved every minute of school so somethings going right. Being so honest means I’ve been contacted by parents who are about to embark on their scary first year with their child with additional needs and it’s been great to support them as they start their journeys, and I hope that as result of our honesty and the schools support, their children our coming into a school that respects diversity in all its forms.

Finally Bailey may not be able to read or write, but he’s nailed making friends, and that is all I ever wanted for him. I always though it was the academic things that were most important to me, but when we met the autism specialist teacher she asked us what we most wanted for Bailey and I immediately went to say that he can write and read and she looked at me, head slightly tilted with that expression...really? ..... and In that moment I immediately realised I didn’t! I couldn’t care less about those things, as long as he’s happy, I’m happy and having friends is what makes him so very happy, so reception was not about learning to read or write it was about learning to make friends and I’m happy with that. watching him with friend he actually plays with and not along side is amazing! Fuck knows how he’s learnt how to be such a social butterfly... It’s not a skill his learnt from his mum, though he definitely got the showing off from Sam!

[bigbadbarry-toyrobot]

A year ago today Bailey was official diagnosed as Having ASD. Autism is such a broad term and I have shared before about what a huge spectrum it is. I think for those that don’t see Bailey day to day, hour to hour, minute to minute it’s hard to see how it even effects him. For some it’s not what you know autism to look like, but this is it for us and it can be hard, so very hard, at times sad and more than often everything feels like a bit of a fight, a fight to get through the day, or a fight to get the help that he needs and deserves, but its more than often an absolute joy. Everything he does, warms my heart and almost always has me on the verge of tears. I cry, laugh and am often furious all at the same time. Until this tiny man entered my life I never knew I could feel so many conflicting emotions. As I’ve said before every tiny mile stone he meets is just that little bit more amazing for us, in the last few weeks we’ve had many meetings with his professionals to discuss the things that he can’t do or finds difficult, it’s easy to talk about those, they’re obvious…to us, but I always struggle with that question ‘what is he good at?’ Which we do also get asked often, but I always stumble at the question, not because he isn’t good at things, because he is amazingly good at things, but I spend so much time talking about his difficulties that it’s hard to immediately think about what he is good at… I’ve started to take those things for granted, so I thought it might be nice to reflect on the things that he has mastered or is mastering since his diagnosis a year ago and appreciate how much progress he has made since then…

1. Conversation-I already take this one for granted, and am often reminded by Sam when Baileys having a bad day, that for a long time this was all I so desperately wanted, and we got it! Not that long ago you couldn’t even have a two way conversation with Bailey, he couldn’t tell me what he had done at nursery, he didn’t really understand the concept of questions and couldn’t follow the simplest of instructions. We’ve still got a way to go with Baileys speech and understanding and it is probably the one thing that holds him back the most, but now he can respond to my questions and follow simple instructions and best of all we chat! Granted it’s mostly about animals and dinosaurs but it’s chat and I love it.

2. Relationships-I secretly love Bailey and Winnie fighting, they drive me crazy with it, ‘that’s my side of the sofa’, ‘I’m telling mummy’ etc, however I am sooo thankful for this! For what felt like the longest time, he ignored her existence. Playing together, fighting together… its together and that makes me happy.

3. Scooting-He starting to scoot!!! He’s late to the game and i had pretty much given up all hope that he’d ever be able to do it. His balance and coordination will forever be a problem for him, so I had sort of accepted it might be something he’d never master, but he’s got such determination he always seems to get there in the end, the next step will be his bike, if he could just stop peddling backwards!!

4. Swimming-He’s starting to swim!! Another thing I just couldn’t see him getting, I watch him each week at his swimming lesson bobbing up and down ‘diving’ (this is what he calls it) he can’t keep his head above the water, not because he’s drowning, it’s obviously a sensory thing for him, he loves being under water, it’s horrible to watch and I’m sure he must consume about a litre of water every lesson, as he pees endlessly after his lesson. But last week I watched him move his arms and kick his legs, he was swimming, for a moment I thought I’d imagined it but then I got the email to say he’d made his grade 1! I hadn’t imagined it!! Even when he seems like he’s in his own world and he’s not listening, he usually is.

5. Academia-me and Sam recently met with a specialist Autism teacher that his school had got in to support Bailey, we discussed what we wanted from Baileys education and the main thing that came from that meeting, was mainly how little we cared that he progressed academically, obviously we want him to but for us it’s more important that we maintain his mental health and his ability to make and maintain friends. Bailey is behind his peers but he’s giving it his best shot and that makes his little victories even better! This week he not only drew his class Ginea pig he also wrote his name ‘Gizmo’, which just happens to be the name of my first pet Hamster!

6. Special interests- He is animals obsessed and it’s amazing…the things that boy can tell you will blow your mind, everyday is a school day!! I mean it is literally for me, as a teacher, but I come home from school and attend evening school on animals. I’ve given up googling things to check if he’s making it up, He’s pretty much always right. He can tell you what most animals eat, where they’re from in the world and any other fascinating detail you want to know!

7. Art- He’s drawing! another thing I thought he’d never do, as an Art and Design and Technology teacher it was a little sad he had no interest in drawing. But suddenly he’s doing it, he’s no Van Gogh but I do love his little drawings.

8. Singing- And I nearly forgot about this one….but he sings!! He bloody well sings!!! And I’ll happily sing if from the roof tops. Bailey didn’t even sing nursery rhymes, he hated people singing, but know he sings in a choir. Once upon a time, not even that long ago he covered his ears and shouted at you to stop singing.

On Saturday evenings Bailey is preforming with his choir to the public, and they will be raising money for the National Autistic Society. I can’t wait to watch him, I will definitely be all proud mummy and I will probably film the thing from start to finish and I will almost certainly be crying…..throughout.

I realised recently I cry a lot, but what I have noticed is that it’s actually rarely through sadness anymore, they are almost, always, tears of joy!

[bigbadbarry-toyrobot]

I’ve done a bit of day time drinking… it’s the end of term, so it feels like I should write a Christmas blog post.

Bailey had his nativity this week and like all mums my heart swelled with pride, nothing quite beats seeing your tiny persons up there on the stage singing their hearts out, but for me, my heart swelled and imploded, all at once. This was a huge milestone for Bailey, my perfect angel sang a song from start to finish. He didn’t cover his ears or shout stop, he happily span round and round clutching a pen singing reach for the stars, pretty much word from word, like his peers, pretty impressive for most kids, but Bailey has pretty much never even sang a nursery rhyme through, and now we can’t stop him. He’s constantly breaking into song, in fact the other day he sang me a beautiful song about how he was having a shower, and how he loves robots, thank god for waterproof mascara because he’s having so many leaps at the moment that I’m constantly on the brink of tears.

Bailey starting school has been really tough on us all, bar Winnie, who relishes telling him and us what he should and shouldn’t be doing each day at school, and often seems to know more about his day than he does. Starting school has bought out all kinds of issues for him, things that just didn’t exist prior to starting school. Issues that the school have worked hard to support him with, but have still caused us stress and endless worry. His class teacher is so supportive he truly loves her, the patience she must have is incredible, I just don’t know how she does it each day, and his 1:1 has been a godsend that has helped support him further with his learning and his social interactions. His SENCO is amazing and his biggest advocate, were so very lucky to have her, always at the end of the email, always looking out for his best interests and going above and beyond her job, supporting him in after school club, something that is not within her job description. Though school has been incredibly tough for all of us, it has been full of positives, he’s starting to make meaningful friendships, mostly with girls, I think this will always be the case for him as they are just so more understanding and accepting of him and his differences. Bailey will most likely always struggle with his learning for a variety of reasons but he enjoys learning and that’s something that truly works to his advantage and the fact that he deep down is a beautiful sweet natured boy. He will meet his milestones at his own pace and that’s just fine. Each student at his school recently received their end of year report and as I heard other mums and dads worry at the school gates that their child was not in the secure or above average, I could have let myself get upset that he was nowhere near these categories but I was content at his achievements, on paper it might not look like much, but as long as he’s happy, engaged and taking part in the day to day I couldn’t be prouder! He getting there and he’ll do it in his own time and when he does it will be bloody amazing. This week he wrote cat, the head teacher came to tell us how proud everyone was and once again I was thankful for waterproof mascara! His moments of achievement will always be magical to me, cause he’s had to work that bit harder for all of them. I was so worried about him starting school but he’s settled so well, He’s got a fantastic teacher and an incredible support network in place, the holidays are the biggest problem for us as he misses the structure he has at school.

There where lots of other things I wanted to write in this blog but lunch time drinking has taken its toll so I shall leave you with a story that I was told should be added to the blog by a friend and I think it shows how proud I was of Baileys cat writing abilities as it was the day he had written cat and the lengths parents will go to keep their babies happy!

Bailey had his Christmas swimming pool party, we all rocked up ready to hand him over for an hour of fun ‘diving’ he’s slightly obsessed with being as Scuba diver, which involves very little swimming and mostly leaving everyone worried he’s drowning! Turns out under 5s needed an adult to attend the party, which was not made even slightly clear in the invite. Knowing the upset and potential melt down that would occur if I bundled us all back into the car to go home, I decided I would have to take one for the team. Sam took Winnie to the coffee shop and I strode into the changing area, where I proceeded to strip to my underwear and get in to the pool, not any old pool, only the one and only ‘Beckenham Spa’ yes I was clearly wearing underwear, not even good underwear, a faded pink crop top with paint on and black going slightly see through pants, and as if that wasn’t bad enough one of the most polished and presentable school mums was there, i jumped in and never revealed so much as a shoulder once in the entire hour, I’m pretty certain she didn’t see me, but I guess we can never be sure, I’m almost certain both of us will never want to admit what we both saw that day, however I can confirm that wearing skinny jeans with no knickers is not a comfortable way to travel home!

[bigbadbarry-toyrobot]

This Is a good few weeks late as I’ve only just discovered it on my phone, but hey ho, here it is any way.

And so it’s Friday (well it’s not now) and the back to school count down begins!! (End of term count down has now started) I’m fine, though, going back to school even after you have made it your ‘job’ Is never easy, but I’m mostly scared for my little man…I’m exhausted and mostly looking forward to sitting for longer than 10 minutes and peeing on my own again, and also not worrying that Monty cat might be crushed to death with love, But I’m also worried about losing my little man again! Autism and anxiety go hand in hand, I didn’t think it was ever something to worry about for us, he always went with the flow, never seemed to worry about stuff, but things have changed, I’m currently pinned underneath him in his bed, because he’s had a nightmare about robots that came out of his wardrobe and grabbed me!! He’s worrying about me!! it creeps in the worry, the anxiety, as their world gets bigger and more confusing. My world gets bigger and more confusing day by day, so how he makes sense of it all and orders it and structures it I have no idea, because his world Is constantly expanding and changing. As I struggle more with my day to day stuff, I begin to understand how bloody hard it must be for him. Half term has allowed him to relax a bit, he’s laughed a lot and smiled, he’s been less angry and I’ve seen proper excitement on his face, something I’ve not seen for a while! He always surprises me by what he finds most exciting, and swimming and seeing daddy’s office easily topped a trip to diggerland, literally the the land of his dreams, but the look on his face when he saw his daddy’s office was priceless!! I’m hoping this term is easier for him, hopefully he’ll get his 1:1 and things will get easier, I’m hoping we’re not just going to be living for the half terms and counting down the days to the holidays, I try not to do this as we’re essentially wishing away time and time Is precious, it’s nice to have these breaks but I’ve suddenly noticed how quick the years go by and I realise I’m stuck in this awkward position of wishing the days away to spend time with my family but also wanting it to slow down… What I need to try and do is be more happy in the now! Any way I’ve waffled on a bit, but when bailey started school I wrote an ‘all about me’ sheet for him, so his teachers could get a better idea of who he is and to get a better idea of some of his challenges. His teachers have loved it, in particular his senco which is good, so I thought I’d share it with you all, as for even those that know us well you maybe unaware of the difficulties Bailey has…. but also some of the things he’s really good at!

[bigbadbarry-toyrobot]

All about me..

Talking with me

1.0. It’s important to understand that I sometimes struggle with two step commands, I’m easily distracted and forget what I am doing. However, sometimes I’m just lazy and this can be confusing for my adults!

1.1. Sometimes it seems like I’m not listening, but you’ll be surprised how much I actually take in when you think I’m not listening.

1.2. I have echolalia, which means I can recite script. I’m really good at saying things in the right place at the right time, in the right context. But I don’t always really understand what I’m saying. However, I am also really good at learning what is the right thing to say at the right time. Why? Because I test words and sayings out in situations until i get it right.

1.3. I really like recalling the past. I couldn’t do this until very recently, so I love saying, “Remember when.......” Please help me continue this with you.

1.4. I really struggle with open ended questions. It’s always best to give me options - not too many though! Two options at the most. However, sometimes I will say I want something and I actually don’t. As you get to know me you will begin to understand when I actually want something, and when I’m just saying something because it’s a learnt phrase.

1.5. I quite often say I want things, and actually don’t! For example, “Bailey do you want pizza?” “Yes” I said, but then I won’t eat it.

1.6. I need more time to process answers to questions, however you should know that sometimes I won’t respond at all. I am not being rude, it has taken me a long time to actually be able to answer questions. Sometimes I might not respond because I simply don’t understand what your asking, but sometimes it might be because I don’t understand that I need to give a answer.

My strengths - can also be my weaknesses

2.0. I can be very sweet and caring. I am social and I really want to have friends but I struggle with continuing play.

2.1. I respond really well to praise and I’m good with a count down to transitions, especially if I’m not doing good listening and you remind me I am not.

2.2. I love dinosaurs, robots, animals (mainly under the sea) and large vehicles. I also love building stuff and making stuff, but I have a very short attention span, so can easily forget and lose track of what I’m doing.

2.3. I do like books and I can point out things from the book. But only if I am motivated and this won’t often happen unless it include things from the above point.

2.4. I play well with girls, they understand me better and have more patience with me.

2.5. I’m really good climber and jumper, but I have no sense of safety.

2.6. I learn well...Mummy and Daddy are teaching me to count to ten and breath if I get angry. I’m getting better at this. I have a incredible memory. As my language improves it becomes clearer to those around me how much I remember/retain and how capable I am of learning, if it’s done in a way I’m interested in. I’m also incredibly good at appearing like I can’t do things. For example, Mummy & Daddy didn’t think I could dress myself or undress, but I do at nursery. And at home I’m a really fussy eater! But at nursery I eat everything up! Nom Nom! Being around other children is good for me as I like to copy and fit in.

2.7. I struggle with eye contact! if you ask me for it sometimes I will give it. Please try and make me give it to you when you think it’s important by either getting down low and engaging with me, or touching my arm as it sometimes helps me to focus.

My struggles

3.0. loud noises can be a struggle for me, I don’t like hand driers. sometimes music can be challenging for me, it gives me a headacheor makes my eyes spin! My favourite music is Royal Blood, I love to stamp and spin to this.

3.1. I don’t understand games! I love them, but don’t understand the rules, despite bring told. I love hide and seek, but I don’t understand the point, I hide but I jump out immediately!

3.2. If left on my own I will flit from one toy to another, with no real purpose. Please try and engage me as I do want to be involved, I just don’t always know how too.

3.4. I struggle with my emotions, I will need lots of help with this. 3.5. I have absolutely no concept of danger, please never underestimate this.

Tricky Times

4.0. I struggle with when I think a injustices has been done. For example, if a child has not been told off when he ‘should have been’, I find this really difficult and find it hard to manage my emotions during this time.

4.1. When I have been naughty or not followed instructions properly, and have been told off, I can become quite upset and will hit or bite myself. Sometimes it is best to ignore me if I am not hurting myself badly. If it continues, distraction technique will work, e.g iPad, dinosaurs, robots or a role play that I am familiar with.

4.2. I am a typical boy. I love rough play, dinosaurs classic boy stuff. But I have no sense or understanding when the rough play needs to stop. Not because I’m aggressive, I am not usually!!! But I just don’t understand, this often ties in with my issues with social injustice!! I need help with boisterous play!

4.3. I don’t understand that you don’t know what I am thinking, so I often start games with people and they have no idea whats going on. I just assume they know that I/we have started a game and they know what’s happening, as I know whats going on. Sometimes it can be a shock to people when I give them a 'tiger punch’ (from Blaze & The Monster Machines) as I knew it was coming...

4.4. It is obvious when I need time out as I stim...I do this in a few different ways...I like to circle walk, hook things over and over again, say things on repeat, watch water running and look at things with my head tilted! If I’m really struggling with the ‘world’ I circle walk with my head tilted! That’s my favourite. If I’m doing this, you will not get much from me, I just need time out..

What my mummy says....

Bailey is a pickle. I’m constantly learning what makes him tick is ever changing, and that is what makes him challenging but also easy...He is no more challenging than my ‘neuro-typical' daughter, Winnie who is in fact she’s less predictable (and much more angry!). It’s always about foreseeing what could set him off, which can be challenging as nothing or everything could set him off. I could offer lots of advice, but it will always be different dependent on the person.

He is not knowingly aggressive or vicious, if he is it is always because of a game gone wrong see point 4.3. Or because of a social injustice, see point 4.0 this is very often the cause of his distress and why he may hurt himself, usually through hitting and biting. Bailey does some times bite others, this is very rare and when it has occurred it has been because he has been tormented constantly and cannot cope with the intrusion any longer, this rarely happens with other children mostly his sister as she know how to push his buttons.

Bailey is a sponge. Not literally. He absorbs language like no other because of his echolalia. He will repeat the sayings and phrase that you say to him, at present they are mostly mine. Don’t be offended if he calls you a, “lazy goat”. Or says, “You’re driving him mad!”

Bailey is beginning to struggle with anxiety, he very often covers his ears or eyes if he doesn’t like something. Sometimes I think this is for attention and sometimes it is because he can’t cope. I hope this does not sound heartless but I often try to ignore this behaviour but I also can easily identify what is a result of struggling with situations. You will soon learn what is attention and what is an actual struggle.

My final note, we don’t really follow a routine, we don’t really do pecs or a visual timetable (though this does work with his SALT) we do lots of verbal preparation and YouTube videos for new things. For example, a few months ago Bailey was terrified of having his hair cut - he would visibly shake and cry. He was convinced it hurt. Nursery and home showed him videos of hair cuts and a few lollipop bribes later and he’s pretty happy getting his hair cut.

Bailey responds well to verbal and visual preparation, as I have said before even when he seems like he is not listening he usually is.

Also, I forgot to mention he is amazing. I mean literally incredible! Have a great time with him. We do.

[bigbadbarry-toyrobot]

I’ve been meaning to write a post for quite some time, the last time I posted was the day before his diagnosis, which seems like years ago now, it’s actually only 6 months, I initially started the blog as a sort of dumping ground for my thoughts and after a while it became a way of sharing the various stages of getting his diagnosis, so I planned to write the post about his diagnosis but I never did, not because I was heart broken or found it difficult to accept I didn’t, by far it was the easiest appointment Ive ever attended, just an appointment where I/we could actually nod along because they got it, they were seeing him as we saw him and that was simply a relief. For me the important and scary bit was making sure that Bailey had his ECHP before he started school….he in fact didn’t start school with it, through no fault of ours. We worked hard to collect all the evidence, so did nursery back in feb/March time last year our area senco at the time took all the forms and said she would start the process. We thought we were waiting for it to go to panel, to be assessed and then one day back in June I received a letter that was very confusing, I spent nearly two weeks trying to get in contact with our Senco as did nursery, this letter made it sound like we hadn’t even started the process, turns out we hadn’t, turns out the one person that was supposed to have our backs, the one person that had Baileys best interests at heart had just decided he probably wouldn’t get it now as other kids in a similar position to him hadn’t! By doing this she took away his right to be a inclusive school with the support that he needs and deserves, she took away our opportunity to appeal any decisions that were made. She didn’t want to put us through the rejection and the failure apparently! She had no right to ever make that decision but there’s not much that can be done about that know. I was angry but I let it go and have tried to focus on supporting Bailey as much as possible. But I’m furious again because he’s struggling with school, the anxiety has crept in, something I thought wouldn’t effect him but it Is now, he’s so tired and clumsy, with his body but also his speech, he’s stimms a lot, new stims and old, his echolalia is the worst it’s ever been, some days all he does it script at me and I realise I actually haven’t had a proper conversation with him for days. He’s become so sensory, noises and lights, things are changing for him and I can’t help but think that if he had the right support in place in the first place this term could have been very different for him and this makes me so sad, this last month has been very hard, Baileys broken nose and another incident this week has left me feeling pretty useless and I worry that he’s just not in the right place, but a unit Is not for him either and we have no other options unless he has a ECHP and it just so unfair. There Is a silver lining mind, I met with his school SENCO this week and they are now going to employ an additional TA to work with Bailey 1:1 I think mainly because he’s a danger to himself and others, I suspect the broken nose and a catalogue of other incidents contributed to this, he’s so very clumsy, this week he managed to head butt a radiator while tripping over a book. I’ve started collecting the accident slips, I’d be surprised if we weren’t in triple figure by July! We have 2 from this week alone. Hopefully within the next month they will have someone and then they will push forward for his ECHP. Hopefully this time he will get the support that he needs, and I can pick him up from school each day with out worrying about what’s possibly happened, I just want things to be easy for him, I’ve realised they never will, but 1:1 will help….I had no idea school was going to be this hard, which Is mad as I work in one, but I genuinely had no idea, thank fuck it’s Friday and half term, we need a week off from my stuff and his stuff, a week of silliness, a week of just being around the people that get him, no pretending, just being us!! Stick a fork in us, cause we’re done!!

[bigbadbarry-toyrobot]

We have our diagnosis on Wednesday 26th April at 3pm, the closer I get the more emotional I feel about it, I’m struggling at the moment, I feel like I’m drowning in a sea of autism, I’m consumed by it, googles my best friend. I like that though, as it doesn’t ask question, I prefer it that way, I don’t like talking, especially about things I can’t change. But the closer we get the more autistic he seems to get, I know that doesn’t make sense, as he just is autistic, but it’s breaking me a little as more of his quirks and challenges appear, and it’s really hard.

This weekend I felt like the worse mother ever, a total failure, I don’t have a clue what I’m doing right or wrong anymore. I don’t think we’ve ever had such a wreck of a weekend, it was exhausting, frustrating and emotionally draining and bloody confusing for everyone. Yesterday morning when I got on my bike and rode away, I felt a weight lifting of my shoulders, I was pleased to be going to work, just for sometime to think about anything else but this, and I hate myself for saying it but i just needed time away from it, time to breath and just be me, it never lasts long, by 11am I was googling oppositional defiance and sensory diets, but the days are beginning to feel like a constant battle and I’m tip toeing through knowing that literally anything could set him off, this is new, he used to be fairly predictable but suddenly he’s not, and I’m in no way prepared for this change and it’s tough.

The normal that I had accepted is currently not our norm and it scares me that once again I’ve got to get my head back round this different path life seems to be taking us. He just seems so hugely overwhelmed by life at the moment, so am I, and I hope it’s just a bump in the road for a while but I might have to face facts that this is our new normal and I’m not 100% ready for that right now, but I’ll have to be and soon.

In 5 months my baby, my tiny little boy starts school, and while everyone last week panicked about wether they had picked the right school for their child, I couldn’t allow myself to over think it, because it frightens me but also because quite frankly I don’t know. What’s good for him now may not be in 5 months time, but we’re cross that bridge once we get there, for now I need to focus on preparing him for the now and worry about the future once we get there.

[bigbadbarry-toyrobot]

It’s national autism awareness week, so I thought I’d share something that would make my life as a mum to an autistic child but also just as a mother easier.

It’s a common misconception that autistic children aren’t social, yes they have a social communication disorder but it doesn’t mean they are not social, as I’ve said before it’s a wide spectrum, so some may not be social, but many are. Bailey is so very social, Winne is painfully shy at times; she hides behind me or buries her face into you if she uncomfortable, she’s wary of new people and this is something we will have to work on with her. Bailey on the other hands actively seeks people out, he likes adult, children, animals he’ll even talk to objects , he’s fearless, but he’s social, it’s his approach that’s the problem, it just terrible. Bailey has no real friends at the moment, there are kids he plays alongside, but we haven’t yet formed proper friendships, not like Winnie, she’s already created her own little angry girl gang.

I’m desperate for Bailey to make a special friend, but in recent weeks I’ve become really disheartened to the whole children’s/adult friendship minefield. As Bailey doesn’t instinctively pick up social skills or cues like other kids do, we have to teach him the basics. Things that come so simply to others do not for him. Were currently working on ‘What’s your name?’ rather than just calling people ‘Little Boy’ or ‘Little Girl’, were also trying to teach him to say ‘My names Bailey’, its hard work but were on the verge of cracking it. He’s just started asking other kids their names, but they never answer him back!!!! Ahh it’s so frustrating, he’s trying, but he gets no response!

Over the weekend he asked three different children their names, I was so proud of him, these tiny little things that most don’t notice are huge milestones for Bailey, he’d been listening, this in itself is a bloody miracle, but the hard work and repetition was paying off. He was getting it, but the children just said nothing and their parents also heard but also said nothing too, so he just stood there staring and asked again a few more times and then eventually just gave up. It breaks my heart because I worry this could be what turns him into an unsocial child and that I believe will change everything for him.

I teach lots of socially awkward kids, autistic and neuro typical kids, and you can tell that life is going to be challenging for them. We need to be able to communicate with people to even function at a basic level without this skill, life becomes hard. I don’t what Bailey’s life to be any harder for him than it already could be. So this is a difficult one to approach and I’m finding this really challenging to write about, because I don’t want to seem judgey or finger pointy because it’s not, maybe if I had two neuro typical children this wouldn’t be an issue, maybe I’d be guilty of doing it to, and maybe it’s because I’m also a teacher that I notice these things more, so here I go (holds breath) by not responding to my child your undoing all the things that we’re working so hard to teach him and it’s just so frustrating, especially as it’s something we have had to model to him for weeks/months before he pick it up. It takes a second to say, ‘Her name is Sarah’, a further two seconds to encourage your children to say ‘Hello’ or ‘Goodbye’, It’s such a small thing and I understand that it may seem insignificant, but these small things will make a huge impact on the development of Baileys social skills. I’m not really a worrier I leave that to Sam, but I do worry that my silly, social, happy boy will stop trying to interact with other children because he just never gets a response. So my plea to you is, if you’re a parent and your child is shy, encourage them to respond to my son, other children with additional needs, but also just other children and adults, not only will you help them overcome their shyness, you’re helping my son learn the vital social skills that he will need to thrive in life. I can’t do it on my own, I need your help. I love the African proverb “It takes a whole village to raise a child” because I genuinely believe that it really does, everyone that he comes in contact with, however fleeting are helping him to develop socially.

[bigbadbarry-toyrobot]

It’s national autism awareness week, so I thought I’d share something that would make my life as a mum to an autistic child but also just as a mother easier.

It’s a common misconception that autistic children aren’t social, yes they have a social communication disorder but it doesn’t mean they are not social, as I’ve said before it’s a wide spectrum, so some may not be social, but many are. Bailey is so very social, Winne is painfully shy at times; she hides behind me or buries her face into you if she uncomfortable, she’s wary of new people and this is something we will have to work on with her. Bailey on the other hands actively seeks people out, he likes adult, children, animals he’ll even talk to objects , he’s fearless, but he’s social, it’s his approach that’s the problem, it just terrible. Bailey has no real friends at the moment, there are kids he plays alongside, but we haven’t yet formed proper friendships, not like Winnie, she’s already created her own little angry girl gang.

I’m desperate for Bailey to make a special friend, but in recent weeks I’ve become really disheartened to the whole children’s/adult friendship minefield. As Bailey doesn’t instinctively pick up social skills or cues like other kids do, we have to teach him the basics. Things that come so simply to others do not for him. Were currently working on ‘What’s your name?’ rather than just calling people ‘Little Boy’ or ‘Little Girl’, were also trying to teach him to say ‘My names Bailey’, its hard work but were on the verge of cracking it. He’s just started asking other kids their names, but they never answer him back!!!! Ahh it’s so frustrating, he’s trying, but he gets no response!

Over the weekend he asked three different children their names, I was so proud of him, these tiny little things that most don’t notice are huge milestones for Bailey, he’d been listening, this in itself is a bloody miracle, but the hard work and repetition was paying off. He was getting it, but the children just said nothing and their parents also heard but also said nothing too, so he just stood there staring and asked again a few more times and then eventually just gave up. It breaks my heart because I worry this could be what turns him into an unsocial child and that I believe will change everything for him.

I teach lots of socially awkward kids, autistic and neuro typical kids, and you can tell that life is going to be challenging for them. We need to be able to communicate with people to even function at a basic level without this skill, life becomes hard. I don’t what Bailey’s life to be any harder for him than it already could be. So this is a difficult one to approach and I’m finding this really challenging to write about, because I don’t want to seem judgey or finger pointy because it’s not, maybe if I had two neuro typical children this wouldn’t be an issue, maybe I’d be guilty of doing it to, and maybe it’s because I’m also a teacher that I notice these things more, so here I go (holds breath) by not responding to my child your undoing all the things that we’re working so hard to teach him and it’s just so frustrating, especially as it’s something we have had to model to him for weeks/months before he pick it up. It takes a second to say, ‘Her name is Sarah’, a further two seconds to encourage your children to say ‘Hello’ or ‘Goodbye’, It’s such a small thing and I understand that it may seem insignificant, but these small things will make a huge impact on the development of Baileys social skills. I’m not really a worrier I leave that to Sam, but I do worry that my silly, social, happy boy will stop trying to interact with other children because he just never gets a response. So my plea to you is, if you’re a parent and your child is shy, encourage them to respond to my son, other children with additional needs, but also just other children and adults, not only will you help them overcome their shyness, you’re helping my son learn the vital social skills that he will need to thrive in life. I can’t do it on my own, I need your help. I love the African proverb “It takes a whole village to raise a child” because I genuinely believe that it really does, everyone that he comes in contact with, however fleeting are helping him to develop socially.

[bigbadbarry-toyrobot]

I really like this non linear comic on the spectrum, have a read!

[bigbadbarry-toyrobot]

That face, that smile it’s perfect, that there is the face of an autistic child, funnily enough no different from any other child.

Yesterday everything but also absolutely nothing changed. We had our ‘Autism diagnosis observation schedule appointment’ We still have to wait for our formal medical diagnosis, which will consist of a meeting with all his professionals in about 6 weeks time, but she, the observer, confirmed what we already knew.

I guess for some, this appointment might have been sad, but it wasn’t, it was reassuring and at times just funny, especially when Bailey poorly engaged in some role play, but talked about daddy and his wine for quite some time. It’s taken us nearly a year and a half to get to this point and in 45 mins she knew. Right there in that room a huge weight lifted off my shoulders. I know, no longer feel like I’m imagining it or that we’ve just convinced ourselves that he is autistic, we no longer have to convince others he’ll just grow out of it, because this is him. Perhaps he doesn’t need that label, maybe in a selfish way I need it more than him, he’s currently oblivious to the fact that his brain works a little differently from us neurotypical lot, but I think that labels going to give me/us the power to fight for everything he needs and deserves and I know there will be a fight.

Schools going to be hard for him, it’s hard for lots of kids, kids with and without additional needs, yesterday for the first time the observer confirmed that she agreed a unit was not for him, she thinks he could do main stream, but he will need support, a lot! But finally someone gave us a glimpse into what the future might be like for us and for him.

The hardest thing about this whole process is the uncertainty, not being able to predict or even plan . You sort of grieve for this life you thought you might have and suddenly it’s all changed not in a bad way, it’s just not what you expected. You go to all these appointments and everyone points out the things he can’t do but no one ever tells you what he might be able to do one day, so you end up thinking maybe he won’t ever do those things that others do so easily, no one will tell you what it can be like, no one tells you if it will get easier, no one tells you what their/your life is going to be like, I guess they can’t predict, because it’s a spectrum and each child is different, and the environment and the people in their lives are going to help shape them, just like any other neurotypical child, but I still wish early on that they could have told us he would talk better, as you can’t help but think about the future…will we ever have a proper conversation with him, will he have proper friends, will he get his GCSEs, find a job, move out, fall in love, have his own family, I guess no one knows these things, but for a while there I wasn’t sure, and I silently grieved for all those things, but after this appointment I was left thinking, any things possible. I guess a small part of me will always be grieving for what could have been.. for a simpler life, a life with out autism, but I’ve said it before, if I took away all his traits it wouldn’t be him, life would be easier, simpler but simples boring and I’m up for a challenge. this is what we’ve got and actually it’s pretty fucking good and actually I guess we’re all probably grieving in our own way for a life we thought we might have, I mean this will annoy Sam no end but I really did think I’d end up living in one of the huge Victorian houses, with sash window, high ceilings and a spiral stair case, I’d be driving around in my convertible Lotus Elise ( This was my 15yr old selfs choice of car) so things don’t always go to plan! Ha! But we all have the power to make our future great, and it will be. I know it. So if anything, this appointment has left me feeling somewhat empowered, the futures what we make it and it might be different from what we thought, but it’s different and better, I wouldn’t dream of swapping what I have for a Victorian house and a Lotus, because what I have is significantly better.

[bigbadbarry-toyrobot]

Today we had a melt down of epic proportions, in Toby carvery of all bloody places! I thought let's treat them to ice cream, I risked it on my own, what could possibly go wrong!! Who doesn't love ice cream, who wouldn't behave for ice cream...I'm a fucking idiot who clearly doesn't know her own children! Winnie ate the wafer, Bailey wanted Winnie's wafer as well as his and so it began!! Winnie hit him, Bailey hit her back, the wrestling match began and then came the call from the speech therapist that I had been hounding all week, what fantastic timing, is this a good time to talk?!? Not really can you call me back in half an hour I pleaded...Sorry I'll be going home then... Ok I can talk! At that very moment Bailey decides it's the perfect time to approach the carvery with all its hot plates, Winnie has also decided she wants out, as I fend them away from the hot plates I'm attempting to listen to the speech therapists, as it turns out badly. I have little recollection of what she had to say, I caught speech therapy review and is still chasing up complex diagnosis appointment, there was more discussed and I'm sure it will continue to come back to me once I fully block the melt down that ensued! Once off the phone I wrestled Winnie in to the buggy, Bailey was barely holding on to his sanity by this point (he's still ill with slapped cheek syndrome) I made my way to the till, only to be informed it's going to be a while as I need to put through this table of 14, who are all paying separately! Literally fuck my life....Come on let us go first I thought, Winnie was attempting to buck out the pram, while Bailey wanted to go home but also wanted to stay, the tears were flowing! 6 in I though surely she might crack and serve us, but no!! As I pleaded with them both to please behave, Bailey had now stepped it up a gear, the tears had started, once they start it's hard to bring him back, he's no idea why he's crying now and he can't deal with rational reasoning, by this point another waitress had clearly sensed I was close to breaking point, she was young but got it, I still can't work out how the other much older women couldn't foresee this but hey ho! We paid, but it was too late, Bailey was hysterical and so confused, now we could actually finally leave, he didn't want too! In tears he refused to move, he now clearly thought leaving was me punishing him, I didn't know what to do, I had the single buggy with the board and he wouldn't get on it, I was panicked we were a good 20 minutes walk away from home, how the fuck was I going to get these two home, on the verge of tears myself a woman appeared and asked if she could hug me, Yes, I immediately said, I don't think I've even needed one so bad! She must have been in her 50s and she proceeded to tell me what a great job I was doing, it doesn't feel like it, I said! You bloody well are, she said! I know how hard it is when their that small and I can see what a great mum you are! She gave me one more big hug and left. I've never been so grateful for a strangers kindness, as I carried Bailey on my hip while pushing Winnie in the pushchair she drove past me and gave me a thumbs up, making me smile and then cry, what a absolute star, she completely made my day, I needed that and she spotted it, and I'll be forever grateful for her act of pure kindness. I hope I can do the same for someone else one day, however they were still dicks the whole way home and I still had to stop for a bottle of wine! Children are bloody hard work and I raise a large glass to all mummy's and daddy's tonight and I suggest you never risk ice cream with two on your own, always take your wingman!!!!!

[bigbadbarry-toyrobot]

Perspective…

So here we are…2017, I always find Jan 1st strange because it doesn’t feel like a new year, my new year starts in September, that’s when I get a fresh start, new kids, new classes, January 1st is just another day…however this year I tried to reflect over the last year, I’ve never been very good at that, but as I saw people’s Instagram post and status updates about what a shitty year it had been, It got me thinking, was it an awful year??? Yeah some shitty things happened, but on the whole, lots of good happened and I could reflect on it and think it was a shitty year, but I think In accepting that our life’s as a family and individuals is going to be different from perhaps what we imagined, I am able to see that last year was a great year, that changed everything for us, and nothing. Life won’t be easy, but when is it! We’re happy, both my children are happy and healthy, one just thinks differently. Just because things are different from what I imagined them to be, doesn’t mean we had a shit year, because now more than ever, I appreciate every tiny, seemingly insignificant thing that my tiny people do. I am constantly blown away by Winnie’s understanding and use of language. I now more than ever, notice ever single new word or phrase Bailey picks up. I enjoy listening to him find out how to uses these new words. Testing them out and reciting them at night in bed, till he finds where these new words fit in his world. Even if I did focus on the negatives from last year, the positives would always overshadow the sadness, for this year I got something I really didn’t think I would for a long time, if ever, but it happened and it made my year. I find it hard to imagine anything could ever compare to the absolute joy it brings me to watch Winnie and Bailey play together even sit together, It’s incredible the bond that has developed between them. I’d almost given up hope that Bailey would ever acknowledge his sister, now he can’t be without her, he asks about her when she’s not around, watching them together frequently makes me well up, just thinking about them together even just writing this makes my heart feel like it could explode, it’s a horrible cliche that I hate to use, but it is the only way to describe it, its like magic! I like to think in someways we are lucky because we won’t ever take for granted the tiny little mile stones he hits, with each one it’s like winning the lottery. Over Christmas we potty trained him, it took about a week and half, not bad for a boy that doesn’t talk much! This time last year he couldnt recall a past event, or tell you what he had just done or even have a basic two way conversation, this year were making progress with that…thanks to everything that happened last year. So this year I’m optimistic, that once again we’re going to have a great year, it’s all about your perspective and embracing what you’ve got, and I’m going to try harder at doing that this year!

[bigbadbarry-toyrobot]

Big news…it’s been confirmed Bailey will be getting SIPS funding (supporting inclusion at Pre-School) how much will be determined in the next few weeks, this will mean Bailey will get more 1:1 support to help him access the EYFS (early years foundation stages) this is amazing progress for us and as a result has moved his EHCP forward to the next step. At the moment we’re working through the minefield that is picking schools…A unit or a main stream and with each school we visit, it gets more difficult to make a decision. They all have their pros and cons, at this stage, without a ECHP our senco isn’t allowed to offer advice or make a suggestion and it’s so frustrating because it’s down to us!! I’m desperate for someone to tell us what to do, what’s going to be best for him, because I just don’t know and it’s so much more frustrating as a teacher, because I wish I did and I feel like I should. I’d love for him to be able to go to main stream, but how will he cope…he doesn’t understand the concept of questions, what will happen when other kids or the teacher asks him a question and he can’t respond. What will happen if he can’t join in with other kids conversations, will we lose our happy little boy as he gets more isolated from the friendships that are forming around him?!? But if we sent him to a unit, are we putting a ceiling on his learning, are we holding him back, are we not giving him the chance or opportunity to at least have a go, what if he could cope and he did manage primary and then secondary’s and beyond…. but what if he struggled along in mainstream with no friends and didn’t get the support he needed, wouldn’t he be better in a unit where he would be supported in making and maintaining friendships, he’d get the 1:1 support allowing him to access EYFS, he’d continue speech therapy and absolutely everything would be tailored to his needs… it’s so difficult because once in the unit system it seems like they rarely make the transition back to main stream. I didn’t think it would be this hard and I wish it wasn’t, because this decision we need to make, is going to shape the rest of his life, and I’m struggling with that kind of pressure, because he constantly surprises me and in a month, 6 months a year, who knows what he could be capable of… a few months ago he couldn’t recall past events, now he goes to bed listing things that have happened, 3 months ago he barely acknowledged his sister, today I arrived at nursery and they were in the same room together, because he had asked to see his sister, (they are in separate rooms at nursery) just watching them together made my heart swell and the tears form, I didn’t think we would ever get to this stage and I’m so thankful for it, but I’m still waiting for the day he spontaneously tells me something he’s done at nursery or the day we have a 2 way conversation and the day that happens, I’ll be a blubbering mess and I can’t bloody wait!!

[bigbadbarry-toyrobot]

Update

It's been a while since I've posted and I will get round to doing a proper one soon, but for now I'll leave you with the list of things that have been happening.. •Referral to complex diagnosis. •School visits, special and main stream •Echp moving along finally, after it looked like it wouldn't be, Bailey did his usual in fooling the Borough Senco all was well in the initial observations, however after a second and third visit it became very clear to her everything that we and nursery see, so has now referred him to the education physiologist ! As a result of this he should also get(looking very likely) Sips funding for his nursery, so his key worker and nursery senco can work 1:1 with him helping him to access the EYFS. •speech therapy started again last month and yesterday we finally had a appointment with occupational therapy, which I will write more about at some stage.

[bigbadbarry-toyrobot]

Today we had our follow up paediatrician appointment today the doctor said he thought he was Autistic, 9 months it will take until we get a full diagnosis, maybe in 9 months people will begin to understand that Bailey is different...though very much like a normal toddler he's also not, he is not neuro typical. I'm sure most people are dismissive of what he is because they think that's what we want to hear, but it's fine, we don't need it, we've dealt with it, this is who he is. There is also no point in convincing us it's mild etc maybe he is but that's irrelevant, maybe his speech will improve, I pray it does, but he will always have a social communication disorder, that's not ever going away and believe me if we have got this far through the diagnosis route, with the appalling funding the NHS gets for these kinds of services then there is clearly no doubt in his therapist eyes that he is anything other than autistic. I'm frequently told by friends etc 'Oh but mine does that' and I mean no disrespect and I cannot stress how much I really mean that because I'm almost certain if I was put in the same situation I'd probably say the same to reassure my friends, but if you stopped and watched 'What mine does' it wouldn't be the same, the things he does appear to be normal toddler behaviour but it runs deeper for Bailey. Yes maybe they (toddlers) don't listen to their names or respond to them, but if you've ever seen me shouting Baileys name virtually into his ear and he doesn't even flinch and he's clearly not doing it because he's being a shit, you'd understand it was different. If your asking your child a question or just chatting to them do they look you in the eyes?! Maybe not always but probably often, Bailey doesn't, we have to ask, he will look you in the eyes if he is gaining something from that situation, it matters not how you feel. Have you ever cried in front of your child and they have laughed?!? it's not because he thinks it's funny but he doesn't know how he should be reacting, would your toddler?!? It's instinctive to most people how to react in those situations. This list could go on forever but I don't want it to become a list of yours can do this and mine can't, because there are lots of things he can do, and neuro typical or not, all children are different, all children are mad! But I'll leave this with you, a story from the weekend, we went to a party with some friends a bunch of really understanding friends (thank you friends😘) the boys don't talk about it the girls do, Typical! Ha! Bailey hadn't napped so we knew it could all end in tears! There were lots of similar aged children 1-5years the older ones where keeping an eye on the younger ones, the younger ones were just being mental as per! I asked the older children to let me know if Bailey was being naughty, I knew he wouldn't necessarily be being naughty but it's the only way to describe his sometimes strange behaviour to other children. Sure enough I was informed Bailey was being naughty, he had pushed some one, though Bailey didn't realise that he was being naughty, Bailey had just been trying to play. Now I'm not making excuses for my children because I think they are all sweet and innocent, they are not! but Winnie is the violent one! Not Bailey, Bailey just has a terrible approach, because he has a 'Social communication disorder' most kids would just say 'wanna play?' Bailey can't, he doesn't have the language, so he get peoples attention by doing to others what appears to be odd things, to him it's the way he thinks it's appropriate to initiate a game, it's often a game he might know, or have played but he isn't able to tell anyone else the rules, also why the hell don't you just know them?!? He thinks everyone knows what he's thinking and he doesn't get why you don't understand. So he pushes other kids to make them chase him, because he thinks this is what he should be doing to get people to play with him, he lays on people, God only knows why, but he thinks this is what he should be doing, he's not doing it viciously, I've seen him being vicious and believe me it looks very different, nursery and us are trying to teach him the correct way, but it takes Bailey a lot longer to understand things, it breaks my heart because he's trying to be social but he fails cause he just doesn't get it right now. One of the older boys at the party said to me that he's three and he should know what he's doing isn't right, and that little boy was right, most three year olds should, and though he is like most three year old boys he's also not and I just didn't know how to explain it to him. I hope it gets easier for him I really do.

[bigbadbarry-toyrobot]

Too much information

Yesterday I popped into Bromley, Baileys had a growth spurt and was In need of some new tops, though the crop top is very much in fashion at the moment, it does look odd on a 3 year boy! So off I went straight to river island, for some reason they seem to cater for his odd little body shape, short legs, very long body and a big ol belly. Outside the store I spotted a stand by NAS (The National Autism Society) I thought I’d go have a chat with them after and see what it was all about. The stand was there to try and raise awareness and allow people to step into a child with Autisms world for a moment and have first hand experience of what sensory overload is like for them. It’s a campaign called ‘Too much information’ and Its such a incredible insight into what their world can be like at times, I really got to experience for a few minutes what is like and believe me its hard work. I was given some headphones and a virtual reality mask and told to look around, it was literally the most overwhelming thing I’ve ever done and really allowed me to understand some of Baileys behaviours, in particular his calming behaviours like spinning and circle walking, watching the film, which is filmed as if you are the child and your seeing everything through their eyes made me see why he walks in circles, he must do it as a way to focus or distract himself from situations that are too much for him. I would recommend watching the video online but if you have the chance to go to the simulation do it, it’s a massive eye opener. The campaign is to raise awareness and to stop people judging children and the way they behave, because maybe they are badly behaved but maybe they’re autistic. I’ve experience a fair share of my own judgey looks, when he doesn’t respond to me calling him or doesn’t answer people’s questions, but I’ve got thick skin and couldn’t care less, but not everyone has and it makes me sad that there are all these families with autistic kids hiding away cause they can’t cope with the looks they might get while out, this is simply not an option for us, the boy must be outside rain or shine. I should say I’ve also met lots of lovely people that aren’t judgey and often give you that knowing look and that’s what we need more of.

Below I’ve included the link to watch the film online but check out the list at the bottom of the webpage to see it locally if you can , as I think the films are tailored to the environment as I was literally wandering round the ’ Glades’ in my video. if not you can order some cardboard googles to experience it as closely as possible to virtual reality through the site. The info is all in the link below.

http://www.autism.org.uk/get-involved/tmi/virtual.aspx