Tag Archives: behaviour

Just a little girl (part 2)

23 Aug

Just a little girl (part 2)

This is a follow on from the post, ‘Just a little girl (part one)’

OCD was now a big part of my life. I can only describe it as a nomality.

As a ten year old child I found it far to powerful to battle. In many ways it made me who I was a paranoid little girl.

Though the fear of fire still gripped me, I now had a far greater fear, “Death” No one told me that the cancer within my little sisters body had the power to take her life! I just kind of knew! This petrified me and practically sent my OCD into overkill!

I never took chances, I couldn’t afford to miss a nightly prayer! I forced myself to continue with the rituals, over and over again.

Looking back, I can see why my, “Odd” behaviour wasn’t picked up by my family. Life was manic which in many ways made the OCD easier for me to hide! Yes, though OCD was a big part of my life, I still knew, deep within, that my behaviour wasn’t the, “Norm”! OCD may well have been a nomality to me, but it wasn’t for everyone else, it was, “strange, weird, odd, carzy and a little bit loopy” Did I see myself as a crazy child? Yes, I guess I did!

This was nineteen years ago, I didn’t have google to turn to. As far as I was concerned, their were no others like me. This fact a lone made it far harder to even comprehend telling anyone, so at this point nobody knew, (and if they did, they never said so)!

There was no discerment, I didn’t know why I made myself carry out what I knew deep down to be pointless actions. Yet, the OCD just obscured any practical thinking this ten year old had, leaving me relentless to it’s powers.

Despite my OCD and my sisters illeness, my childhood was a happy one. I loved that I lived with both my mother and grandmother. I remain close to my father despite him not living at home with us.

The years that my sister was seriously I’ll must have been the hardest and most tiresome in my mothers life. My mother had always worked & continues to this very day. Rachel was so sick my mother was forced to take leave. She was now frightened to leave her daughters bedside. Rachel’s care was now shared between three different hospitals, ‘Lewisham’ (our local hospital) ‘Great Ormond St’ (the London based hospital for very sick children) & ‘Barts’ (another London based hospital with a specialised Cancer unit). My mother didn’t know if she was coming or going.

Only now as a mother do I fully appreciate just how difficult a time this must have been for her.

I remember all to well the effects, ‘Leukemia’ had on my sister, who was nothing but a toddler when it struck. I was visiting her at, ‘Great Ormond St’ once, when she throw up all over me, resulting in me needing to go home wearing an operating gown, (which clearly displayed my underwear at the back)! Lucky for me, we wasn’t using public transport, (as we usually would)! My uncle was with us, meaning we would be going home in the car.

Another strong memory I have is my sisters, “sudden” hair loss. I remember this baby with beautiful, thick, floppy, White blonde hair. What seemed like over night, it was all gone leaving her with nothing but a completely bald head.

Children at school would say the most nasty things, like, “Hows your little brother?” I would often fall for it, replying, “His fine, thank you” only to be laughed at and told, “Not that brother, your little bald one”

I look back now and see that, “yes, they were just silly little kids who didn’t understand, but at the time, I just wanted to hit out at each and everyone of them!”

I do remember one particular occassion, my sister was allowed home for a few days (very rare) I danced with her in my mothers rooms. She was dressed in nothing but a nappy. It was a very warm summers day and I could her the children playing outside. I had no desire to join them, I just wanted to be with my sister. As we danced I told her I loved her, in my head I was praying for her not to die! That’s one of my strongest childhood memories.

As if our family hadn’t had enough bad news, things were about to get worse. Not long after my sisters diagnosis, my first cousin on my fathers side of the family, was hit with the very same cancer! I can’t remember how old she was, older than Rachel, just a few years younger than myself I think! This means she was 7 or 8 years old at the time. Can you begin to imagine, both my father and his sister were parents of two very sick little girls, battling leukemia. I will never forget my mother shouting at my father, “But they told us it didn’t run in families!” You have to agree, this seems like more than a coincidence, it was almost as if God had it in for us.

Well, I’m pleased to report that both my sister and cousin are now healthy young women, both each with a beautiful daughter of their own. Both fought the scary C word we all fear, both came out the otherside.

By the age of 12 and fast approaching a, “Teen” things started to go a little bonkers for me. I started secondary school, took up smoking and was fast becoming a rebel. The nights remained as bad as ever, so during the day I just wanted to enjoy myself, have some fun. For the first time in my life I noticed makeup and boys. I watched when the, “popular girls” applied their makeup, tied their ties shorter, while rolling up their skirts. This was what I was becoming! The toilets become my regular hangout, where I would smoke my way through lessons.

It was during this time, that I started to pay attention to what I ate. So much talk amongst the girls involved the topic of, “Diets”

Looking back now, this scares the hell out of me. Yes, I don’t want my own daughter who is eight to worry about her weight at this crazy age. As 12 year olds, we were far to young to take on such issues! Yet here we are in a day and age where girls as young as 7 (maybe younger) have been known to have body hang ups. This is something that causes me great sadness!

Me, I was a stick, (so to speak). I was a healthy child, a girl who could eat what she wanted yet remained naturally silm. Some of the girls, who I wanted to mix with, the ones I were convinced were the, “In crowd” openly discussed how they made themsleves throw up after dinner, how it was a win, win situation, you could eat what you wanted and remain silm… For fuck sakes, we were just 12 years old! By the time I was almost 13 I was doing this regularly. This was despite the fact I knew I was thin, I didn’t even think I was fat! Yet, it was now more then a habbit, almost an addition. Worse, Bulimia now mixed in with the OCD resulted in an explosive combination. Combined, the OCD now controlled the Bulimia. Life was about to hit an all time low.

The last part of my story will follow soon. Just a little girl (part three) will be the final post which concludes my story. Please return to find out the ending.

Note the story has been written to raise awareness of some of these issues, why highlight why I have an understanding of some of Little mans difficulties. Although I don’t have Aspergers, I do relate to his OCD behaviours and is over anxiety.

A message for Mr Cameron

14 Feb

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.


LEA make bogus excuses for not assessing child’s needs

9 Jun

At last I finally have time to update my blog. What seems like months has only been weeks. Nevertheless so much has happened in such a short space of time no wonder in losing my days.That’s right today I almost missed my Early bird course (Autism training for adults and professionals) as I could have swore it was Monday. Well I soon came to my senses and got my butt in motion I didn’t want to miss the course as it going so well and I’m really enjoying it. It’s a great opportunity to learn more about ASD and when you have a child on the spectrum you can never know enough.

Well I finally received the letter from the LEA sen unit. It was about time too. I was disgusted with the way they treated me and little man. I wasn’t kept informed on the decision process and considering they had not followed the timescale of six weeks an explanation would have been greatly appreciated. I mean what’s the use of the Sen code of practice if the authorities have no regard for it. I’m not stressing over a silly few weeks or something they delayed the decision if to assess for five going on six weeks. Is it just me or would some kind of a letter and a simple apology be too much to ask? Well it seems so as the refusal letter didn’t state anything in relation to the delay and lack of communication on their part. It did however state their reasons for not agreeing to an assessment of little mans educational needs. Ok I’m not joking when I say at first after reading the letter more than once I did consider that maybe the LEA had made some mistake. Is it possible my child’s case was some how accidentally  been mixed up with another childs evidence. reality hit me like a smack in the face. These people really don’t give a ****. I’m sorry but what the hell is happening here? The LEA state that since little mans school have identified his needs and put certain provisions and strategies into place he has started to make progress in terms of his behaviour. Woo outrageous, Given this excuse I’m now wondering if they even bothered to open the letter I sent requesting the assessment in the first place. Lets see would it be the five exclusions his had since the 1st March this year or maybe it’s the fact his had well over twenty serious incidents recorded against him in the same time frame. I’m guessing it would be something more specific that really swung their judgement like the fact he hit a teacher or managed to escape from the school where luckily I was stood outside. Let’s face it given this level of evidence, the extensive list of exclusions and serious incidents it’s fair to assume that in order to access the relevent resources that my son requires directly as a result of his condition he would need to completely fail first. Let’s be honest as sad as it is his not far off. Well as you can imagine I was gobsmacked (not often Claire is lost for words) but I was also deeply worried about what move I would have to take next. The letter also stated that once the outreach teams had been in and assessed and the school had put into practice the advice suggested by them If it was thought little man still required the Statutory assessment the school could then readmit the assess 1 form. I took legal advice and was told to contact the tribunal service without delay given that I only have two months to appeal then I should not risk waiting for forms to be readmitted and again refused as I wont be able to appeal again in till a much later date (six months or a year I think) Made sense to me and with this I searched for a solicitor to take my case. I really needed my sanity for the children and not only was I strapped for time with three children one with aspergers, one trying to cope with daily life as a sibling to an aspie and a six month old baby I also didn’t want to do it alone. I just wanna enjoy the children for a while and at the same time know that someone is working on my appeal. Lets face it without a statement little man will end up lost and with that I will have to make difficult decisions on what best to do for him in till I can readmit my request. Yes It’s unbearable thinking about but I have to be practical.

Well here’s some positive news I attended the follow up meeting from the 26th April 2010, This was basically to review little mans past month’s progress. I have to say the last meeting was incredibly strained. I felt nothing was achieved and it wasn’t constructive in any way. I became a little emotional and I cried which I regret but sadly couldn’t help. With this memory I wasnt looking forward to this meeting and would go as far to say I was feeling kinda sick knowing it was approaching. This time I took my Mother (Who better than to support and keep you strong) I was surprised to see that this time other professionals had attended and the meeting was looking a little more formal. I felt nervous and uneasy and just wanted to get thinks done. Well I have to say I needn’t of worried so much. The other professionals who had attended where from a specialist school who provide outreach to little man. They were made up from a group of three. There was the outreach worker who works directly with little man on a one to one basis once a week, the headteacher from the specialist school itself and another very nice lady but I was and still am a little unsure what role she played within the outreach team. However she was extremely nice and made it her mission to be fair and understanding. It was also helpful to meet the outreach teacher working with little man. Again she was extremely nice and not only shared her thoughts and opinions on little mans learning and behaviour but she also took the time to listen and encourage me to share my thoughts and opinions. The Headteacher of the specialist school was very organised and direct but not in a rude way. I really liked him and felt he was fair and made valid points and helpful recommendations on ways to best solve current problems experienced with little man. The headmaster and the Senco were also at the meeting and we spoke about the LEA refusal to assess, little mans growing complexed needs and the head made a point of saying that little man wasn’t really being included anymore as he was chosing to move himself away from classroom activities. This I could also understand and is a bit of a worry. The level of support he currently receives is high and integrating him slowly back into the class routine will be incredibly difficult. We all discussed little mans need for an assessment which will hopefully lead to a statement. It was reassuring to know that everyone at that meeting was in agreement with that. So on the whole it went well and I didn’t leave feeling miserable as I had perviously.

So before I get some much-needed sleep I just want to say that all though things have been a nightmare at school home life has been Ok. I say ok as that’s all it’s been but when you have had real trying weeks you fully appreciate the “Ok” days. Half term was good and little man spent a lot of time socializing with the boy next door. They share a love of transport and though little mans is more a obsession his little friend seems ok with it. Yes they had a few disagreements but nothing to explosive. It’s great he has a friend who is happy to be bossed by him 🙂 Honestly I say this in a joking manner but all parents to children with aspergers will completely get where I’m coming from. It’s also nice to have a non judgemental parent who don’t drag their child away from yours in the fear he may catch Aspergers or just be lead down the route of misbehaving. She is very sensitive to little man and his needs. She allows him over and puts up with his very loud tone and moody strop without ever judging him. I can see he has become more and more comfortable with their family and that is a great achievement because apart from his cousin and his partner in crime at school he didn’t really have a real friend till now. And to be able to hold onto this important friendship makes me so very proud. Like the teacher at my ASD workshop said today. All parents love to feel proud of their child and it’s the same for parents of children on the spectrum only they can be proud at what may seem the simplest thing to a “typical child” but to a child on the spectrum it’s a huge achievement.

Tears, Buses and awards

9 May

So it’s been a while since I’ve updated on the subject of life at home and school. So heres the latest.

HOME

The behaviour chart seems to now be having a sight effect on little man. He didn’t really care about stickers before but since his sister Alice got her bonus reward of £10 on top of her normal pocket-money little man has sat up and took note. But my did he go on and on with his blandishments and pleas for the same reward as his sister! Yep mummy was a BAD MOTHER and he went on to more inappropriate name calling, So much so it’s better I don’t write them down here in the event I may offend others. He spent the whole day till the next day swapping from one technique to the other. None being particularly helpful to his case but nevertheless he consider it to be wroth a try! Well I am exceptionally pleased to report that despite his tantrums escalating into full on meltdowns and me heading to bed early hours with a pack of painkillers in hand due to receiving a verbal head bashing for hours  I stood my ground showing no mercy and indeed not giving in.

Little man has decided to put us through the hell of bedtime once more. As most know already getting little man into a bed time routine is hellish. Yes children with ASD like structure and routine but when it comes to bed then well a lot of that flies out the window. It’s like the Melatonin has stopped working. I know he can over ride the medication but he often goes with the flow resulting in him getting some much-needed sleep. The thing with children like Little man is there tends to be no in between. Your tired or you’re not! Your staving hungry or not hungry at all. There seems to be no build up to anything little man does. When he goes to bed and to sleep he just goes, One moment his wide awake the next his sleeping. And when his awake well it’s the same his WIDE  awake. Being his parent  who is observing his recent changes in behaviours and reluctance to sleep I have come to the conclusion that the worries little man faces surrounding school and his continued obsession with buses are both contributing factors. School is up and down for the little man right now. He recently had a physical fight with his “best friend” Alex that had escalated as a result of a play fight which took place in the classroom. Little man ended up with a pretty nasty mark behind his ear. I will write more regarding school a tad further on in this post right now I want to write a little more about Little mans obsessive behaviours and how these are now beginning to affect everyday life. Little man used to like both Trains and buses but it’s easy to see that now buses are top of his interest list. He lives and breaths buses. I’m not extracting when I say buses are his LIFE. From the moment he wakes till that last moment of conciousness they are fixated firmly  on his in brain, No wonder he has trouble working in school. It’s become very intense and he is very focused on anything resembling buses. His Father got him up and dressed and out the house for school with only minor problems. All this because of a promise made by Dad. Get up and ready for school and I will take you on the bus. Not just any bus but the 194 to west Croydon and back after school. How in god’s name he got through the school day with that extent of excitement mounting throughout the day surprises me. Don’t get me wrong I’m pleased he has an interest and what the hell buses aint that bad a thing to like BUT it’s just very over powering at this present time. Yes we can use the buses as a reward to engage him in displaying good behaviour at home and school but at times I wanna scream “SOD THE BLOODLY BUSES” No I haven’t done this but I’m not denying the moments been close. Having an important conversation with your child only for them to start beeping like bus doors is more than annoying but please go into any conversation with little man with caution because the possibility of him dominating it with his “special interest” is pretty likely. I have been lucky enough to be excepted into a course which I think is run by the ASD outreach in my area called Early bird plus. It’s a new course as it used to just be the early bird which was for parents of very young newly diagnosed children. Now its up to 8 years ( Little man is 9 but thankfully It was over looked ) It is fantastic it’s a small very personal course with about 10 parents but we are all given the opportunity to take two others one being family or close friend the other being a professional from school. I have researched and read a ton of books relating to little man’s Aspergers in order to educate myself but there is always room to learn more. It’s great meeting like-minded parents and the organisers are so nice and more than understanding. I loved that you could see it was more a passion to bring awareness then a job. I got to voice my main concerns at present when It was my turn to speak about my child. Well as you may have guessed School and obsessive behaviours were at the top of my list. These were followed by concerns of bullying towards his sister and use of inappropriate language already after the first class I feel a much more positive person and parent. Looking forward to the coming Tuesdays when I plan to attend with a close friend who relates and is non judgmental towards my little man.

SCHOOL

Well we had the Meeting and lets just say it wasn’t what I expected but then again what did I expect? What I was most disappointed with was the fact it was only the headteacher , the Senco/assisting headteacher and Little mans class teacher who I must add has always been extremely happy to discuss my sons progress and he really seems to care what happens to him. What a shame he has a classroom of 30 something other children. I took a friend and some on from the parent partnership service. Yes I expected a good deal more professionals to attend, We had already postponed and one of the reasons was in order for it to be convenient for others. Regardless of this disappointing turn out the meeting went a head as planed. There was a lot we didn’t agree on and a reluctance to discuss past events given some were only weeks if not days ago. I do wish I had been so much stronger as at the very end I did cry a little. I tried so bloody hard not to but I’m just human at the end of the day and this is my child we are discussing. It’s not easy having him excluded and as his mother being powerless to stop it. The parent in partnership worker felt the meeting was extremely tensed we were in need of someone outside the cycle to help the strained relationship rebuild as yes it was clear to all there is a huge breakdown between myself and the school. She did suggest a mediator which I’m good with however the school seemed a little less keen but you never know maybe. Well the good news is that little man now has good provisions and accommodations in place. He has his own TA for the best part of his structured day ( sadly not much of unstructured time where I consider much of the problem to be ), his own workstation with laptop and visual timetable. He has been taken of the going for gold system as it isn’t working for him. The going for good is a system setup for every class. Each child starts on a gold card and throughout the day can have it turned due to bad behaviour, Once your on RED your out that class and mum and dad are getting a phone call or letter. Well as you can guess little man hit red a lot of the time. I would go as far as to say he sometimes had his card on red before morning play. So he now has his own behaviour chat and with it his own rules which to me seems better for now. We have also started a contact book which seems a good move as I can warn them of his morning moods and report anything I feel will distract his day at school. I also get to read how things are going and see his progress daily. This is something I wish we had started long ago. So yes at present the level of support is good but the Headteacher said the problem is that the current level of support on offer is not for a long period as the resources and staff it uses hence the reason an educational assessment of needs is needed. But the likely hood of this being grunted is low and this was something we were both in agreement on.

In relation to exclusions have they stopped? Well I really thought that progress had been made and yes exclusion were being avoided. On the return from the Easter half term things seemed pretty good but nothing lasts forever and he was excluded on the 5th May for hitting the teacher. It was said he threaten to hit her then swung his arm and his hand hit her face ( This is what the letter stated ) And then there was a number of other reasons basically the same ones as always so lets skip that and go back to the hitting afterall that’s pretty massive stuff. Little man again got upset claiming to be playing with the teacher he said he threaten in a playful way and the teacher was laughing he said he did put his had on her face but didn’t slap her it was soft just playing. It’s my opinion that my son has problems relating with adults in a different way from children. He don’t see a difference and if anything sees adults as peers. He regards a certain TA as his buddy. This lead to another exclusion where it was said he hit them, Again he says it wasn’t meant this way he was playing. The only positive thing is that it’s for the shortest time possible this being just one day. Still will exclusion have a good effect on little mans behaviour? I don’t thing so, It hasn’t so far, why now? We still have to reintegrate him back into school which is always a difficult one as he has to attend part of the reintegration meeting which mostly gives him the hump as he wants to go to class and not sit and discuss past behaviours. Needless to say this has to be done and is an important part of reintegration but that still don’t make the situation any easier.

So school has been a very mixed bag these past weeks but I do wish to end on a positive as often this isn’t the case. Well Little man received an award at school for his mathematics. The ward meant a certificate which stated Math genius. It was presented in school assembly a place little man often struggles resulting in him shouting out and disrupting the whole school, so it was nice knowing something really positive was taking place. I was so proud I almost cried when he showed me. Ok that same day he had a classroom fight and kept leaving the class without permission and was a bit disruptive in class but to say I was proud was an understatement. To see him with that certificate was so much more for me then it maybe would have been to another parent with a child presented with the same award. I’m not saying they wouldn’t be proud of course they would but for little man its massive! I can not tell you the last time he brought a certificate home. His sister yer all the time which made this extra special it was like a rare gemstone. I have displayed it proudly on the fridge and I’m hoping it’s given some company really soon.

Obsessional Overload

14 Apr

So we are around a week and a bit into the school break. Alice will be returning to school on the 19th April with little Man returning on the 21st two days later than his peers as a result of his current Exclusion. I feel as if the return to school is a million years away. Little Man has kept us busy and to say his been a little demanding would be an understatement.  His routine has gone a little of the wall these past few weeks. Since his first exclusion I’ve noticed his sleeping is once again on a downward spiral . This is with the use of Melatonin. If he over rides it than we are in trouble for the night. No sleep results in a real pain in the back side for the day that follows. Like any human being a lack of sleep will always result in a lack of happiness! Yep he transforms into this walking time bomb. You want your head to remain on your shoulders than best stay clear of Little man when his in time bomb mode.

Over the past week I have again noticed an increase in his obsessional behaviour when it comes to buses. It has gotten so bad that all he wants to do is ride on the buses up and down the road we live on. The friends he has made lately have knocked and asked him to play. When he does he just seems to drive them loopy with talk of buses. I have noticed  a decrees in visitors since Sunday. He said he would rather study the buses where Jordan just wants to go park and climb up trees. Alex just wants to play fighting games. I just don’t want him to stop mixing with the friends he has made. It wasn’t easy for him to make these friends and to see them slipping away is hard. But then if they are real friends they will understand and be there waiting to play once the obsession settles. But kids will be kids and at  least he isn’t being bullied for his obsessed ways. He really has been on a bus mission from the moment he wakes up till the moment he sleeps. I’m hoping it wont get in the way of his learning at school but then again he isn’t doing much of that lately.  lets just hope he can do a full week without exclusion. God he needs educating and I need a break. I’m not going to feel bad when admitting that. I’m not super mum and don’t we all feel this way as we near more to the point of the return of school?

Fighting yep there has been a fair bit of that happening at our house these past couple of weeks. Little man and his sister are at it consent. Well it feels consent. I’m sick of hearing my own voice telling them to give it up. Any little thing they end rowing. Little man is so controlling and becomes so angry if she don’t play by his rules then all hell breaks out. Marriage! I feel sorry for the woman who marry my Little man. Ok I wish him love and happiness in his adult life but he is gonna drive them ladies crazy. Everything has to be done his ways, His way or no way. Alice seems to give as good as she gets lately. Can’t blame her as she spends so much of her time being bullied by her big brother. She told him if he carried on she would poke him in the eye! He laughed and said go on then. Well to cut a long story short she did. He stood shocked with his month open before leaping of the sofa and chasing her up the stairs. Um yes good times.

Yes it really has gotten to that time where I’m longing for them to go back to school! Never mind little mans routine suffering mine has disappeared. I’m just hoping for a smooth reintegration back into school. Or mummy could end up becoming a little insane!

WHAT DID YOU SAY ABOUT ME MUM?

28 Feb

OMG WHAT A NIGHTMARE!

OK maybe I should be more careful when I say something while little man is about! But come on sometimes he will go right over the top. But that’s just G. Well today we were at the supermarket’ everything was going to plan. For once I felt that my head was working as it should be (before I become a busy mum ). I was remembering everything’ yes without a list! and little man was on good behaviour. Everything was going my way. Shopping complete I make my way over to the check out.

“MUM CAN WE GO TO THE DO IT YOURSELF CHECK OUT?”

“NO G I HAVE TO MUCH SHOPPING FOR THAT. THERE JUST FOR PEOPLE WITH TROLLY’S WE HAVE A BASKET”

For those of you that may not know what the hell I’m on about. The self pay check out means there are no stuff’ you beep it then pay it by putting your cash or card through a machine. But, Big but! When you have a lot of shopping you pay at the check out with the assistant. And yes I sure did have a lot of shopping!

So there I am unpacking the trolley onto the belt. G is helping, he likes to do this. But today his doing it with anger. His not at all happy as his upset at the fact that we are not using the self pay check out. His talking away to himself, well more along the lines of moaning to himself! I ask him whats up but he tells me to shut up! NICE!. The lady at the check over hears and ask him whats wrong. ” My mum is horrible and nasty she never lets us use the self check out”. ” That’s not a nice thing to say about your mum” she says. He looks up and simply says I don’t care. When G acts like this I always think god they must think i dragged him up. G can be rude but he can also be extremely polite. It’s what mood his in but I guess that’s all of us really. Well to an extent. She asked if G was often like this! I jokingly replied yep everyday. Next thing i know his screaming at me and marching of at full speed ( His fast ) Grabbing the bags ( All ten of them ) I sling them into the trolley and do what seems like a supermarket dash as i run after him having not a great deal of luck in catching him up.

“What up mate?”

“U told the lady u put up with it everyday”

“G I was just joking!”

“No mum you were talking about me!”

You see the littlest thing gets to him in away it would not most other children. We phone a cab and sat on the bench to wait for it to arrive. Little man had a face like thunder and sat right on the other end on the very edge of the bench. Any passers-by must have fault I had something catching’ that or I smelt bad! Well at least he wasn’t screaming at me in fact he was doing a wonderful job of not talking to me at all, that was to …………. The cab turned up.

“My mum told the cashier I was bad everyday!” He was blurting on to the driver.

“No that’s not what I meant G!

“That’s a lie mum I’m not bad everyday and you said you put up with it everyday!” He went on and on and on……

I’m sure the cab driver wanted to laugh but he dared. As we parked up and started to get out the car the cab driver said good luck. I think he knew I needed it, I sure did! G went on about the whole thing for a least another 5 hours. I wanted to whack my own head against a brick wall. God my head was ready to explode. When it did stop I was so grateful so very grateful.

THE WORD PEACE TO A MOTHER’ ANY MOTHER IS A FANTASTIC, STUNNING AND GOD-SENT WORD.

TO A MOTHER OF A CHILD ON THE SPECTRUM IS ONE OF THE ABOVE AND SO MUCH MORE BESIDES.

LOOK AT US NOW!

9 Feb

When i first heard that G was going to be assessed for ASD. I was both shocked and relived. If this is something you have just heard you maybe too. Once i had sorted everything out in my head the next step for me was to get educated on the subject and that’s what i did. I would advise anybody who has a newly diagnosed child of ASD or  those that think there  child could be on the spectrum should do this.

I found a great deal of information on the net. I also reed many books and spoke to other parents going though the same as me, my son and whole family. Once i started to research ASD i saw that things within the spectrum could be seen as gifts. There are many forms of autism some more high functioning then others. Aspergers is a condition on the higher end of the spectrum and Aspergers is the label given to G.

Once you know where your child is within the spectrum and you look at the reasons behind certain types of hard or unwanted behaviour you can then begin to avoid the upsets making your child’s life that little bit more easier. Ok not everything can be avoided certain sensory issues are hard to avoid but knowing what they are is a starting point. Lets not forget anybody within the spectrumof Autism sees the world some what differently from us.

There have been many times i have sat and cried but there are far more that i have smiled. When I’m on the net and i read forum post by parents of children with ASD and there so stressed angry and tired i think to myself that was me. Ok i’m not saying i never have them days anymore! I’m just saying it’s very rare i do. There is no cure for ASD i really don’t care what anybody has to say about that it’s just a fact’ But why would we want one anyway?

My point is before hearing your child had the condition they were the same child’ you loved them the same way you do now. The way i see it is your born with the condition the condition is what makes that child and your child is what makes the condition. If i asked for G not to have Aspergers that’s like me asking for a different child altogether. If you looked at us before and looked at us now! You would see how a understanding in Aspergers has helped in bringing me and my child so much closer. Don’t get me wrong we have always been close I’m close to both my children but G being close to me is different as it’s on his terms. Today it’s still on Giovanni’s terms but look and you will see he has opened up a little more as i understand him so much better.

My child is wonderful and yes my child has difficult times and yes he has at times got bad behaviour’ some non related to ASD as he is still human. But my child is who he is and i tell him never to be ashamed of that person.

Life doesn’t always have to be this hard there are many ways that we can make it easier for ourselves and children.

SO WHAT!

1 Feb

G is different from other children in more ways then one. But that’s that.
Please Don’t say you fell for me or tell me to keep my chin up. Because all through he can be hard work and send me a little la la from time to time he still is the best kind of hard work there is. I would never want it any other way. He teaches me more then I ever fault I would learn about life’ G and his sister are my life and I enjoy everything about it. The only thing I would want to change if given the chance would be to change the way people see ASD. I wish I could click my fingers and then his school and many others would have this great understanding on ASD. The results being a great deal more support on offer for families and the child. “But come on!” We can’t change everything sometimes that’s the way of life. No one can change others views on a subject no matter how annoying this maybe. We can try to educate’ if that brings some awareness to just one person then that in itself is a welcomed result.

Giovanni can demonstrate bad unwanted behaviour but don’t all children do this to some degree? OK it may be a little more intense but it’s not 27/7. I’m sure some people think I have this 8yr old that is extremely bad. Giovanni can and more then not he does demonstrate very good behaviour. Some of the things he does others would count as bad and unreasonable behaviour when there not! These things such as saying something to another that could be seen as rude would not of been meant to be seen in this way. That’s the thing you see. Children with Aspergers tend to end up with problems due to reasons that can’t be helped.

When ever someone says Stay strong, I fell sorry for you or anything along these lines. It makes me angry!
Why fell sorry for me? I have a amazing son who yes has Aspergers!
BUT SO WHAT?
G is mine, I love him, I’m proud of him and love being his mummy:)
Looking after any child can be exhausting. But it’s rewarding isn’t it? Well it’s the same for me. Aspergers makes this no different.

IM A MOTHER TO A CHILD WITH ASPERGERS! SO WHAT?

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