Little man takes over the blog!

Well, Hello everyone

Very special post for you all today, a treat for all that voted for me as their Most Inspiring blogger, I’m humbled and still on cloud nine that I won.

Anyway enough off all that, I’m boring every one with my over excitement.

So, as for this treat I have to share? Those who have been following this blog from day dot will know how hard its been and may remember a post I was preparing back in late 2010?

It was in actual fact an interview as opposed to a post.

The person being interviewed would be my very own Little man (aka a boy with aspergers)

Yet things got messy and things were now far to uncertain in little man’s life. I was confused! Can you just imagine how he felt!

I made a claim to the tribunal on the grounds of discrimination against Little man’s old mainstream primary who were now teaching him in isolation, hiding him from ‘Ofsted’ inspectors, excluding him daily, which they did once or twice on an unofficial basis! This soon stopped as I set about learning the Ins and outs of educational law.

Little man was never able to mix with his peers, he missed one school trip after another, till he snapped and began throwing his whole body into brick walls, scratching his arms till they bleed and whacking his head against the wall!

He even sat in a room alone as his peers enjoyed Christmas Carols in assembly.

Final straw was well and truly pulled and I withdrew and become his mum and his teacher for a few months. He then got a home tuition programme on the grounds there were medical reasons.

We were now fighting for an assessment, then a statement. We got both, but the statement wasn’t worth the paper it was written on. Only a few months back did we receive his now final statement with everything in it (OT and SALT)

best of all his attending an independent special school for children with Autism and Aspergers.

We withdrew the discrimination case at the last-minute settling outer tribunal. We now have the apology letter for the heartache caused. It’s not going to repair things but it’s something and little man can look at that one day when he needs to as he often blames himself.

I was also taken to court for Non school attendance, what a disgrace I know! At least I didn’t go to prison, though it was possible.

Now life is better, I look at that mess and think about how stressed and unhappy we were as a family! That’s why I think now would be a great time to got that bit further and let Little man do a bit of the talking for a change, hopefully building up some confidence along the way.

We don’t have a magical tale to tell, just some pretty normal random stuff and a bit about the issues above. All the same we really hope you enjoy reading…

It’s 4 pm Little man returns from his day at school via his transport/taxi. He doesn’t ran off to his room like he always did in the past, things are different somehow now!

He came and sat with me and he spontaneously begins telling me about his day. He received ten thumbs up the highest achievement one could get! I was chuffed and he was just as happy, I could tell by the big fat grin spread across his chops.

Mum: So, Little Man do you fancy being interviewed

LM (Little man) Being What?

Mum: Interviewed!!!

LM: Like on the news mum?

We’ve both done reports with the BBC news and ITN as well as local papers and radio.

I can’t blame him for thinking it!

I explained what I wanted to do in terms of sharing it with readers from the blog. He looked at me like a weird crazy chick.

Mum: If I interview you the readers will hear your own voice instead of your mums!

LM: How, if its written?

Yep he has a literal understanding to which I try my best to avoid them little sayings but they sometimes slip of the tongue.

LM: What do you mean they want to hear my voice instead of my mums! You are my mum!

Yep, I’d hit him with a double dose of confusion!

Mum: Oh,You know what I mean (as soon as I said it I thought what a stupid thing to say).

LM: Umm Nooooo

A little bit more prep and we were back on track (though I avoided making that statement out loud)!

Ready steady go…..

Mum: Hi there, what’s your name and how old are you?

A burst of laughter filled the air!

LM: You know my name mum stop asking me stuff you know.

Mum: It’s not for me, it’s for our readers, come on let’s do it!

LM: Do What?

Mum: The blog… Do the interview!

LM: Oh… *giggles* I know now! My name is G and I am 10 years old!

Mum: *cough-cough, How old?

LM: Oh, Oh, I’m 11 actually I had a birthday on Saturday.

Mum: Sign you’re getting old.

LM: I’m just 11 years old, your very old…

Charming!

Mum: So you have something called Asperger’s syndrome can you tell us a little bit about it if you don’t mind?

LM: I can, Aspergers is a very, very clever thing, But I didn’t used to think this. Some geniuses have Aspergers.

Mum: What… Ginger’s?

LM: Nooooo Genius

A few months ago he would have taken that as me taking the “piss” out of his hair resulting in a meltdown. This time he laughed at my mistake alongside me 🙂

Mum: are you a genius?

LM: No! Well actually I’m a genius on buses and bus numbers I think!

We then get stuck into his favourite game for a further 10 minutes. I have to shout out random bus numbers and he states their destinations.

LM: Mum, I really Like the lady’s voice who announces your destination on the bus! Is she a computer?

Mum: Umm yes, I think so!

LM: Mum is she foreign?

Mum: What, why?

LM: I just need to know!

He continues mimicking her voice in a monotone type of way!

Redirection was needed, Buses could kill this interview!

Mum: What School do you go?

LM: xxxxx school for autism

Mum: Where did you go before?

LM: With my tutor!

He looks sad as he misses him dearly. The tutor taught him on a one to one basis at the library for 5hrs per day during the week as no school would take him (apart from his current one who the LEA first refused). He was with his tutor at least 6 months.

Mum: What school did you go to before that?

LM: A horrible one!!

LM: Why wasn’t I allowed to play or be with other children. The head told me I was rough and made me miss all trips at last-minute. He made me angry, he didn’t like me.

LM: Mum, I don’t understand why I was never allowed in classroom when I was good? Is it because I have Aspergers so I’m not the same?

Mum: No you’re not the same your better!

Slight smile…

LM: Mum tell the readers about the day he called us at home and wouldn’t let me on the coach!

I said two words and he cried… It still hurts, So we skip it.

Mum: What’s the best thing about your new school?

LM: Time!

Mum: Time… I don’t understand.

LM: You are not told you have 10 minutes or 20 minutes no one rushes you and makes you feel worried about doing work. That’s the best bit!

Mum: That’s good babe, anything else?

LM: The children some are like me. They don’t pretend to like me I think they do.

I’m rubbing a tear 🙂 a happy one of course.

Mum: Whats the best lesson?

LM: PHSE… No, no actually Social skills!

Mum: What’s that then?

LM: Faces and stuff…

Mum: Faces?

LM: Yes, faces and feelings and the way faces look!

Mum: Oh… I see.

LM: We can’t do science in special lab yet.

Mum: Maybe soon?

LM: Yes, maybe!

Mum: What are you good at?

LM: Maths… you know that mum because I’m better then you!

No, his not joking… He is!

Mum: What lesson are you not so good at?

LM: Handwriting, I don’t like it as it hurts my fingers.

Mum: What else don’t you like?

LM: A knife and fork scrapping on the plates like Alice does!

He pulls a funny face and wiggles

LM: It makes me fuzzy mum!

Mum: So, What do you really love like?

LM: Lots… I like buses best ever, then trains & tube and black taxies.

Mum: Anything else?

LM: The word international and music, I like Bruno Mars.

Then his gone…

Mum: “Where you going” I shout!

To which he replies…

“We are finished mum”

Charming, so, bloody charming indeed!

A fresh start

It’s 3-Am the early hours of Thursday morning, Little man is running around the house like some headless loud chicken on pro-plus and redbull. 

“Come on, you really have to settle down now! You know you start your new school tomorrow, don’t you think you should get some rest”? This was me, trying to unsuccessfully reason with my ten-year old little man! He seems more lively than ever despite the 8 mg of Melatonin he had an hour before! 

It’s the night before the big event! This is quite possibly the biggest event in little man’s life to date, for the morning will bring with it a new beginning, a chance to start a fresh! Don’t all children deserve this? 

Over the course of a few months I watched my child lose every last stripe of his self-esteem. I watched him being gradually excluded from everything he had learnt to love, socially isolated from the friends it had taken far to long for him to make! I battled a system that took every last inch of my strength to break, the endless meetings, the tears from both myself and my child. I listened to the professionals each one slowly giving up on him, the constant calls to collect him as he was said to have been a danger to himself and others, maybe he didn’t fit in with the daily activities planed for the day. I went to court where I found myself prosecuted for my child’s school refusal, not once but twice. I watched him cry, hit his head and ask god why? When my child stated, “I just want to be normal” I cried and continued to cry for nights, days, weeks even months after. I was scared for my sons future, for what lay ahead. I felt lost, wanting to remove my child from the school I felt was truly damaging him, the school that taught him in isolation like some mass murder. I battled for a statement, I got one, then battled for the appropriate amendments to be made! I got brave filing a claim for discrimination and getting the result we wanted although knowing this already tough relationship would now get tougher. Finally I removed my child from the educational setting that was so, so wrong for him, and watched the slow improvements as he was taught 1-1 for five hours a day at the local library by a great tutor supplied by the LEA. I found a school, an independent special school, solely for children with autism! Yet the Lea were not about to hand it to me on a plate and only after every single state maintained special school failed to offer him a place did they finally give in, agreeing to his placement at my preferred school. Little Man had spent the last six months out off school, prior to this, for the period of a year or more Little man was either home on exclusion, educated at school for the period of just three hours per day given in an isolated environment, spending the afternoons at home where he was home schooled. Now he would take the steps needed to make a slow transition to his new learning environment with the help of his tutor, his now best friend! 

This was a big deal for him, I understood that! It’s a big deal for me too! His excitement was electrifying, yet his anxiety was closely hovering by! Little man is wide-eyed at 3-Am almost every night, So this night wasn’t any different! However his this degree of hyperactivity was at a high and risky level, one I hadn’t seen in a while.  

It was something past 4-Am before little man finally gave in, surrendering to his bodies cry for sleep. I tried hard to stay awake, the fear I would somehow sleep through the alarm having fallen asleep so late was within me! Though I gave it all I had but was defeated, just as Little man was an hour before. 

What seemed like five minutes later (God I hate that) I was rudely but thankfully awoken by the horrid buzz of the alarm clock. Rubbing my eyes and seriously struggling to see a thing I faintly made out the numbers on the alarm establishing that it was 7-Am. I could have so easily closed my eyes, reasoning with myself that five minutes extra would do no harm, that I somehow would be able to remain in touch with my head that would remind me that I needed to get outta bed. But I didn’t… Though I have in the past, I made myself get out of that bed and get on with it. 

Waking the little man was like waking an angry dinosaur that or an over hormonal teenager (at ten, this isn’t great… meaning I would preferably go with the dinosaur right now) He angrily gave me an unwelcome gesture of his middle finger then so kindly asked me to @%** Off! I persisted in-till I had movement. Up he got with an awful load of abuse in toll . This little guy had only been a sleep a total of three hours and of course he was filled with both the fear and excitement about the new school . I tried not to escalate the situation and let him dress at his own slow pace. Eventually I was greeted with a somewhat more pleasant child, who sat next to me and said, “Mum, I’m terrified”  Holding on to his hand, I told him it was gonna be Ok! But if the truth be told… I was terrified too!

I would not be joining him for his first morning, It was decided that he should instead start the transition process with the help and support of his tutor. He would only go till 12 p.m. slowly working his way up to full-time. His tutor would go with him for the first two days to settle him before his contract to teach Little man would reach an end. (This was going to be hard) The taxi came and the escort came to the door. Little man walked out to greet her, I shouted that I loved him, to relax, enjoy it, to have some fun. His reply, “I love you too mum” His eyes were so tired and filled with fear, yet I knew he was also excited. I was incredibly proud at that moment… I could have exploded with pride, for after all his been through he was now taking this giant step into the unknown. The morning dragged I sat by the phone on tender hooks, ten, then eleven o’clock no call. I just wasn’t used to this! 12.30 I heard the knock, I ran down the stairs like sonic the hedgehog and flange open the door. There he was, my little man and his tutor. 

Indoors, feed and settled, (this has to be done before probing begins) I asked… “Well, what was it like?” To which he replied. “It was the best mum. I even made a friend! Oh guess what? He has aspergers just like me”  It was then I realised that the tears & the battles had finally amounted to something. I’m not stating they were all worth it, just that for once they lead to something positive. This time I cried the tears of happiness! 

 It’s early days yet, but for once I’m opting out of my usual pessimist attitude and holding on to the hope that this is really it…

A fresh start!

Holy Macaroni Its A Panda

It’s around 1 P. M Friday 27th, May and I’m applying the last coat of mascara In my desperate attempt to become something of a yummy mummy, though human will properly do just fine (no sleep the night before makes this a challenge). The plan is to make myself somewhat presentable in-order to escape this house and the housework that comes with it and instead hit the shops before my little “cherubs” return home from school! As I grab my handbag and a pair of lifesaving oversized sunnies (recommended for any tired mummy for hiding a multitude of sins ), I set off for the door where I’m greeted by our “ever so friendly postman”.

Bills, bills and more bloody bills… Hang on what’s this??

Err, I hate surprises, in my experience surprises put through my letter box are not usually the welcome type!!

I tore open the envelope and began to read… blah… blah… blah… “Holly Cow!!” I couldn’t quite believe it! I read it again, then again, then yes, you’ve guessed it… AGAIN!

My eyes start to blur, a tear drops onto the paper, closely followed by another, they rapidly increase in-till the words written within the letter are no longer recognisable.

For once these tears were not caused by sadness, but joy, relief and gratitude! Throwing my head back, I looked up above and said aloud, “Thank you god, thank you!”

My Little man had just been given a chance, a way through, a future!

This letter was from a school, not just any school but one that I have been keen for little man to attend for some time. (Keen being a slight understatement!) The school is fully independent and even better it’s an autism specific school.

Holy-Macaroni… Its so long since anything went right with little mans education that I was a little unsure how to react. Is it appropriate to give it some… “Woo-hoo get in there my son!!” (Quite literally) How about engaging in a little victory dance? One things for sure, as ecstatic as I was, something seems to be holding me back from doing either!

It’s Just a school placement right!

It’s so much more then that for us, for Little man! It’s his chance! Shamefully it’s been a hell of a long time since anyone had been willing to offer my son such a thing!

Do you know how it feels to suffer rejection over and over again? Maybe you do! But how many people can honestly say they knew that feeling at the young age of ten? I’ve watched every last inch of Little man’s self-esteem fade away, I’ve seen & wiped the tears from his eyes, I’ve spent days and nights giving him reassurance, trying to repair the damage and help him gain back his confidence… only for someone to come along and undo it all again, all them hours, days and weeks to make progress… vanished in seconds.

The worse thing of all is the questions projected at me! I’ve had to answer questions no mother would ever expect nor want to answer when their ten year old child asks, “Mum, why can’t I just be normal” or “If there is a god, why wont he help me fit in?” These are a selected few… There are sadly many more, some I find I am unable to write, by doing so I become a broken mess with questions of my own! This accompanied with his tendency to self harm by throwing himself into brick walls or his scratching his arms till they bleed is the extent of damage been done at the hands of those that should have provided an education suitable to his needs while ensuring his emotional and metal well-being was protected from harm, but instead taught him that, “it isn’t OK to be who you are!”

My son went through something I wish for no other child or adult! He was discriminated against for being the person he is, because it wasn’t what was considered “Normal”, what society expects from a child! As his mother I felt somehow responsible for this after all it was me that placed him in this mainstream primary school! I finally did remove him from at the beginning of December 2010, which felt amazing for all. Being a parent who has a legal duty to ensure their child is in school has been a nightmare for me! I have a child with social communication difficulties who developed school phobia (Yet no one told me such a thing existed) why ever not? After all this landed me in court.

The above was a situation I was placed in twice and of course this was before his behaviour became unsettled & challenging in the school environment.

It was towards the end of year three that things change! Along came a string of both unofficial exclusions (aka Illegal exclusions) and fixed period exclusions with added threats of the permanent type on a regular basis. There was even an unsuccessful push towards a pupil referral unit (PRU). I decided to get myself educated on education law… More particularly that of ‘Special educational needs‘

When your child is excluded or removed form every school trip/activity, isolated and hidden on the day of inspections, then you know there is something very wrong happening! Just before our tribunal hearing for the case of disability discrimination, I finally agreed to settle. A formal letter of apology was given to myself and Little man, review and adaption of policies was agreed, and most importantly staff training in special educational needs and discrimination would be carried out by July this year! Having removed him from the mainstream setting he has now been out of school since early December last year. Yet before this time he was only in half days taught in isolation (himself and a TA) this or exclusion meant he was educated at home more then in school. Since January he has received home tuition, on a part time basis of five hours per day. During this time and also on this very day I have been battling for amendments to be made to Little man’s final statement of SEN. This had been so badly written and lacked so much provision it wouldn’t be worth having (In other words it was no worse then not having a statement at all) Of course the LEA wouldn’t agree to the high fees of the independent school and firmly stuck to their guns, Well… they did up in-till time started running out. Having searched high and low for a state run special school over an area of around four or five boroughs, with all schools claiming they could not meet Little man’s needs. The LEAs response to the tribunal on the 5th of this month therefore stated that they are no longer in a position to oppose pt 4 of the statement, “My request for the independent school” as they were unable to secure a placement anywhere else!

Wow.. This meant that the LEA had approached all the school’s they felt suitable for little man, yet all refused… Although I wanted my Little guy at the independent school, it was still disheartening knowing no one else were willing to give him that chance

The school had assessed Little man in the library setting on the 16th and just this week he took a tour of his soon to be new school. Although he states his never going to a school again and his now really attached to his tutor, something magical happened as he liked it so much he asked, “So, when do I start?”

A slow transition at little man’s own pace is planed. This will involve his tutor attending alongside him in the beginning gradually reducing the support as his confidence grows.

I won’t lie and say I’m not scared, I’m petrified! Yet something tells me to put my fears aside because this is where it all begins, this is where it gets better! I have the pleasure of seeing my child happy as over-time he rebuilds all that’s been lost and damaged along the way, while achieving his dreams & showing everyone that never offered such chances or failed to see him as more then a child with difficulties… what they missed out on! An Amazing boy With Aspergers

Oh, in cause you’re all wondering… Did I make it to the shops? Yes, I did, though I wished I had looked in the mirror before setting off! All that crying had me mistaken as a Panda bear that or battered woman

Remember if you like the blog and think me and the little guy deserve a nice shinny award then please vote us the most inspirational blog at the ‘Mad blog awards 2011″

A message for Mr Cameron

Ok, So I had some problems with my auto publisher yesterday and this is a bit later than planed! However I think you will agree it was worth the wait. Colin explains how life is like for him today and back when he was a child. He tells us about his late diagnosis and the effects its had on his life. He even sends out a message for Mr Cameron, stating a few home truths.

Here’s my interview with Colin… A man with Aspergers

Enjoy.

Claire… Hi Colin, firstly let me thank you for taking part in the interview and also a big thanks for your continued support with the facebook page ABWA by way of the great advice and input you give within the page. So my first question to you is…

Would you be so kind to Describe yourself  in five words?

Colin… Obsessive, Stubborn, Shy, Intelligent, Creative

Claire… It’s my understanding that you were diagnosed as being on the spectrum as an adult… If you don’t mind me asking, how old was you when you were diagnosed and what diagnosis was you given?

Colin… I Was diagnosed at age 44, with Aspergers Syndrome

Claire… Can you tell us a bit about how the diagnosed came about? Did you always know you were somewhat “different” to your peers as a child?

Colin… My diagnosis came about through a councillor I was seeing, through talking to me about my past and how I interact socially. He thought I might have aspergers , so then arranged an appointment for me to be assessed to see wether I was or not. as for knowing if I was different or not, yes I did feel different even though I didn’t know exactly what was wrong, I always put it down to shyness and lack of self-confidence and being a little eccentric.

Claire… Wow I’m guessing that the diagnosis was quite a shock then?

Colin… Yes the diagnosis was a shock, even though it confirmed a lot of behavioural patterns that I had put down to something else…  The meltdowns, obsessions, not being able to talk to people etc.

Claire… Has a diagnosis changed anything for you?

Colin… Well if anything the more I know about my condition the more I feel im not in control. I was told that I would either just get on with my life without a hiccup or it would take over my life. Well, its taken over my life, ive let the diagnosis affect me. if that makes any sense.

Claire… That’s a really interesting statement… Do you think in a way you would have been better off not knowing then?

Colin… In my case I would have to say yes, only from my point of view, others might say I havent really changed at all, that the diagnosis has highlighted that it’s a condition not an attitude

Claire… How did family and friends react to the news?

Colin…  My family don’t know about my diagnosis. I havent been in touch with them for six years. I’ve not many friends at all in fact the ones I do call friends live over a hundred miles away but I haven’t seen them in five years, they don’t know! The friends I have online I’ve only told a select few

Claire…” I’m very sorry I didn’t know that you had not spoken to your family for so long and your friends live so far. I’m pleased you have those few people online to be open with (Me included)”

What would you say to the ignorant people who claim our children on the spectrum will grow out of it?

Colin… I would say that my case proves that you don’t grow out of it, as I’ve been told you either have aspergers from birth or you don’t have it at all, well for 44 yrs I wasnt diagnosed but when I was I certainly hadn’t grown out of it from childhood, it just didn’t suddenly appear it’s always been there I just slipped through the net for many years.

Claire… I mean all children with ASD become adults with ASD and sometimes I think people forget this. What do you feel is lacking within the current system in terms of support for adults on the spectrum?

Colin… There is no or little support from the government for adults, cause its taken as read that the diagnosis will be realised early enough to support them at an early age the support seems more geared towards children than adults, we are left to really fend for ourselves. There is a charity drop in center I can go to, but no 24/7 service. Basically I was given a diagnosis and go.

Claire… “I would have to say that this concern is voiced by every adult on the spectrum that I’ve come to know. It would seem the government just ain’t “getting it” either that or they don’t give a S**t!!!”

If I told you Mr David Cameron reads the blog (u never know lol) what would be your message to him?

Colin… We adults deserve support just as much as anyone else! Sweeping us under the carpet don’t help anyone, everyone talks about inclusion but if it cost money or difficult then you can forget it!

Claire… As an adult with AS can I ask you… Do the meltdowns, anxiety and extremely challenging behaviours improve with age, are you better able to control such  meltdowns now?

Colin… In my case the meltdowns still happen, but are less frequent than they used to be. As for controlling them I’m not sure I can control them… All I can say is that they don’t last as long as they did.

Claire… If you could go back in time and do things differently knowing what you know now what would it be?

Colin…  Not sure to be honest, I would have liked to have finished my degree in mechanical engineering, but let things slip. Not sure if that was down to my aspergers or not.

Claire… ” I would say it’s never to late to finish the things you started Colin”

How was your school life growing up?

Colin… I Was bullied at school, was a quiet and shy child who was quite happy to play on my own as well as with others. My obsession with music was noticeable to me at an early age about 10 years old.

Claire… “Oh my goodness I’m now getting an insight into the mind of my own little Aspie! Little man is 10 totally obsessed with buses and nothing has ever come closed till…… Now that is. He is a fan of Bruno Mars has stored a huge amount of info on the guy and after getting his album two days ago has memorised every song lyric for every track on the album. He can’t sing through and can drive me a bit potty with his singing lol”

So a quick change of subject! What do you think of our current educational system given that ASD is much more known today?

Colin… I Can only go from my own experiences, since I left school in 1979, can only say that the educational system is slow to react to things even when highlighted. Bullying is still rife now so what does that say?

Claire… “No Comment Colin”…. You know what I think!

So… Do you have any “special interest” Passions that take hold of you? Are these long-standing or do they change over time. Is music still a big part of your life?

Colin…  Music has always been a big part of my life, I’ve  been collecting music in various formats since I was 13. I’m obsessed with downloading music, writing poetry. All other obsessions come and go.

Claire… When are you happiest?

Colin…  Plugged into my iPod and writing poetry.

Claire… Do you or did you have Sensory processing problems as a child? Have these changed, improved or just been replaced?

Colin… Noise affects me and always has…  Just different levels or situations are more difficult to deal with than others, people eating, dogs yelping, get woken by the slightest noise so my sleep pattern is bad.

Claire… “I’ve always thought that Little mans father is an undiagnosed aspie and his pet hate is hearing others eat. You crunch he freaks out”

So, they say some people with AS have a high pain threshold! Do u? Little man don’t really get ill or catch bugs that often (unlike his younger sister) but he feels pain “big time” (if there’s blood we are in trouble) so, this don’t apply to us lol.

Colin…  Not sure if I have a higher threshold for pain, but I have a high threshold for dealing with low temperatures, don’t seem to feel the cold as deeply as others do.

Claire… “Yep Little man is the same…. No coat in winter and don’t take it off in summer”

Did you have many friends as a child and do you now?

Colin…  None, that’s my problem I don’t seem to be able to keep friends. People come into my life and then I let them fade away.

Claire… How do you find social situations?

Colin…  Still difficult, even with people I know.

Claire… What subjects did you excel in at school and what ones never made sense?

Colin… Technical Drawing and Maths.

Claire… Interesting… Can I ask is it mental math that your good at? Just that little man is ace at mental math ( better than me) and other parents have reported the same.

Colin…  Yes mental maths… I used to go to the shops at age 5 for my mother and was always able to count and know it was the right change I was getting for the items I was getting. still don’t use a calculator much in daily life.

Claire… It’s said by some that those with AS lack empathy! What do you say?

Colin… Maybe we lack social skills, but we are loving we just don’t know how to express things well, as for myself I express my self better in my poems than actually speaking etc

Claire… What advice would you give to an adult reading this that suspects they are on the spectrum? Is it to late for a diagnosis, is it really needed?

Colin… It really depends on his or her situation, whether it is affecting work and home life never too late for diagnosis.

Claire… What advice would you give to a child/teen that is struggling to come to terms with their diagnosis seeing themselves as someone who is  “abnormal” with very low self-esteem?

Colin… We are normal, we just look at the world in black and white rather than shades of gray, we can be too trusting. but as people we are no different from what is described as normal! We want to be loved, laugh, etc

Claire… “I just showed this to little man and he said thank you… He likes that!”

Colin… Tell little man I said thank you, us Aspies stick together.

Claire… What advice would you give to parents like me raising a child on the spectrum?

Colin… It will be hard, but if you keep giving your love and support as much as you can, the rewards will come, you will see your child grow into adulthood… I’m not saying with less problems but with more understanding and maybe more control.

Claire… Finally, I’m a big fan of your beautiful poems… I’m wondering if you could write one for us to sum up how life on the spectrum is for you. This would be a great ending to our interview.

I am seen but not seen

They see the book cover

Not the story inside

I breath, I bleed, I think

But I am not part of the crowd

My world is black and white

I can not understand

Subtle shades of grey

Warm bloodied

I am still bereft of love

For emotions are hard to fathom

What is easy for most

I find a mountain to climb

Do not pity me or scorn me

Do not hate me or ridicule me

Born from the womb

I am of flesh and blood

I am human too

By Colin Weir

That was fantastic Colin 🙂 Thanks again for giving us all an insight into the mind of a man with Aspergers.

Please feel free to leave your messages for Colin and I will see he gets them. If anyone would like to contact Colin you can friend request him on Facebook. Let me know and I will be sure to pass you the link.

How could they be so heartless?

Hello all..

As most will already know (Some more than others!) This week hasn’t been a good one. Yes,It’s been a complete nightmare in fact.

It seems like it’s been a long time since I’ve posted anything positive. What can I say? Life isn’t always kind (More so the people in it!) I feel I’ve been pretty decent when choosing what to and what not to write in a post. There is a great deal of stuff I hold back, for a number of reasons. Yet those who read the blog often comment to express their outrage in the treatment little man has faced, and the hurdles we as a family have had to climb.

Yes, we have faced some trying times (More this year, then ever) but… this week just took the biscuit.

I’ve stated more than once my upset towards my sons exclusions. No mother wants this for their child! I touched upon my child’s battle to attend educational trips and activities, how his self-esteem is becoming crushed every time his considered to be a “liability” by those that don’t truly understand (Or chose not to.) As stated above! I’ve held back on the finer details on all these issues. I’ve done this for many reasons, one being the reaction and treatment I received from my child’s school in relation to past post. Now I’m pretty feed up with people making me feel crap for expressing myself, after all isn’t it my human right to speak? This blog is my place to let some tension out. I wont be made to feel wrong for doing so..

I love my son! He, like his brother and sister are my world. Their isn’t a thing in the world I wouldn’t do for them.. not one! Little man didn’t ask to be born with AS. He didn’t wake up one morning thinking, “I’m gonna act like a complete brat today” Yes he can be naughty, he is a nine-year old boy. But.. there are times that behaviour are results of his AS, you just need to know when! Little bad wasn’t always “challenging” at school, far from it in fact! Little man was more quite, and when he was there (Sometimes he would just refuse to go, no matter what I tried) he would often cope, letting it all out once home. This seems to be a common problem for many parents of children on the spectrum! Their child displays “odd” or “challenging” behaviour in one setting, but not the other. Sometimes I wished that was still the case. This proves that once little man had a good routine in terms of attending school, he became more challenging in the educational setting due to an array of things. Sensory, environmental, anxiety e.g. These are a few challenges little man and other children on the spectrum encounter daily. Little man has trouble dealing with these pressures. Little things become massive, voice tones become confusing and somewhat sarcastic or aggressive. There are triggers EVERYWHERE!

Little man was given Six fixed period exclusions from March to July last (school) year. This school year he has already bagged himself another two. Shocking seeming we are only just in September, the very first month of the current school year. I mentioned before that I consider some of his exclusions to be unjustified. The trips well yes, I feel he has been excluded from these in a way that can only be described as discriminating. No more is my child told he cannot take part in educational trips and activities, he is now just excluded on the days they take place! I feel totally powerless watching my son be rejected from one trip to another. I am outraged at the way the school have dealt with exclusion and how they have no regard for our privacy. The current situation is a total mess! I am appalled at a number of their recent actions. These actions are completely unacceptable! They highlight a great lack of respect for me, Little man and the family. I feel we are disliked! My child for the way he is and me for the way I advocate for him. I feel we are treated this way from those I should trust. There is no longer a part of me that trust them. This totally saddens me. I’ve tried working with everyone. It goes no where. It’s one big disappointment in every way.

Last week Little man was given a fixed period exclusion. He missed swimming due to this exclusion. He had been having a terrible week, to the point I had to keep him home one afternoon, and contact the education welfare officer. This was so I could express my concerns over a current problem he was having involving his sensory processing, and how others were not able to understand his genuine upset. I was advised to return him, but expressed my fear that in doing so may result in him getting into trouble due to his anxiety. I would rather he stayed home through a decision made by me then have yet another exclusion on our hands (One brought on my anxiety and frustration.) The next day Little man returned! Did I have a sick sense? Maybe! Yes, little man was excluded by the head teacher at 6pm via the telephone.

I hate that we are never notified of exclusions earlier, or better still on collection from school. Getting Little man into an evening/night time routine has been difficult and having them excluded him at these unreasonable hours is just not on. I feel that having to always inform him of his exclusion is unfair. It’s not great being the one to inform your child that they have been excluded, will not attend a trip or another educational activity. It’s never been an easy task, but never as hard as his current exclusion, the one he is currently serving.

I’m not referring to the above exclusion but the exclusion we were given on Wednesday evening at 6.20 pm. This was not a simple exclusion but an extremely hurtful one for little man. I knew it was coming due to something little man was told not five minutes before the call. (This is a whole other shocking incident, that I will not yet comment on) Shock and disbelieve hit me when I was told he would face yet another two-day exclusion. He had been back two full bloody days! Teachers training day was this Friday meaning day two of the exclusion would be Monday. This was the day Little man was to attend his trip (The big trip) the trip he had looked forward to. Why? Because he would be going on a coach! A few weeks back Little man had a massive meltdown in the supermarket. He didn’t sleep and was displaying challenging behaviour the entire night. There was no possible way both the children could attend school that next day. However I went to speak to Little mans class teacher. It was discovered that the teacher had left the class that afternoon telling the children to display good behaviour while he was away, or No Trip! They had no idea where they were going as of that time, yet little man was incredible excited. I was told by another Teacher (TA) that little man was becoming very upset as a peer was not doing the right thing! Little man thought this meant the whole class would miss the trip! I spoke to little man that evening and he explained that his class peer was not being very good and the whole class would miss the trip. I had to explain this wasn’t the case. Little man was pleased saying.. “No one will ruin this trip for me” He was double as excited on discovering the type of transport we would take (Yes I did say WE, and we means Mum! I would be their to.) He repetitively  asked each day how many more days were left to go. Now this has happened! I was expected to tell him. I was the one who had to hurt him. Maybe he knew deep down this would happen, maybe this is the reason he acted the way he did when his friend misbehaved.

Angry I was fuming..  1) This was even happening. 2) The way the exclusion was decided and when. 3) The fact I had to tell him. 4) Yet another trip missed. 5) This is a double punishment!

Little man cried till his eyes were sore. He spoke between catching his breath. He was broken. There was nothing I could say nor do to make it better! The whys kept coming, followed by “Please mum go and speak to them and ask them, Please) Its Saturday early morning and I am being completely honest when I say his still hurting.

How can they be so mean! I do not agree with this exclusion, it was done for reasons I don’t need to spell out. It was another knock to his self-esteem. This treatment is nothing other than horrid. Exclusions on trip days are a double blow. Not only will he feel he doesn’t fit in he feels he wasn’t wanted on the trip. Can you blame him? It’s not just the out of school activity he missed Thursday, Mondays trip, or last Fridays swimming! It’s all the other activities his been excluded from last year. It’s far to many. Please correct me but exclusion isn’t working so why use it? I wouldn’t mind but some weeks I find out his done something that to me is considered more serious. Then there are times like these! He is excluded for something far less serious resulting in him missing out on trips and activities. How does this system work? Forgive me I’m lost.

Lastly I want to say that yesterday my blog was given a good going over! Sadly for the wrong reasons. Maybe an update on exclusion number eight was sought after, or print outs were needed, who knows. I want to say that this blog is not written about anything other than my life with a boy with Aspergers. Sadly this is our life right now. This blog is aimed at others like me (Parents, carers or families parenting an AS child) It’s also their for those on the spectrum and anyone else wanting to learn more about how life can be with a child with AS. Some days are good and others not so great! But this is it.. Right now our life is a battle. I can’t stop it, no matter how hard  I’ve tried! Therefore whoever wishes to read this blog, then do so for what ever reasons. But those who do should understand that this is what is happening right now in our life. My son is already low in confidence and the above is not helping fix this. No aggressiveness or treats will be expressed within in this post, just pure tiredness and great upset at this horrible mess. The fact Little man now awaits an appointment with a specialist because he makes himself say sorry to god repetitively in his head or aloud, every time he acts a certain way, to avoid bad things happening is a worry and only highlights how bad things are becoming.

I hope the school have a fantastic trip without the disruptive little aspie, known as my son.  It wasn’t just a “Trip” for little man it was his chance for him to feel valued and build his self-esteem!