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I don’t just have ASD.

I’ve very kindly been allowed to share this blog post from
@Katesvie http://www.bluewithatouchofpink.com

I Don’t Just Have ASD

I don’t just have ASD (written by Kate Shippey)

I have feelings that can be hurt,

I have a heart that can break,

I have a mind that has trouble to think the way yours does sometimes,

I have eyes that don’t work as well as yours when I’m a little stressed,

I have ears that can be extremely sensitive to noise that seems ok to you,

I have arms that can work overtime, flapping when I’m over stimulated,

I have a torso that feels like you’ve pushed me intentionally when you just squeezed past,

I have legs that can kick out at you when you ask me to leave something, and I struggle to do so,

I have a mind and body that struggles to understand life as you know it,

I have emotions that I struggle to identify with,

I find it hard to understand the difference between morning and night time,

I find it hard to deal with children crying,

I don’t know when it’s time to eat,

I don’t know when it’s a school day or a weekend day,

I don’t like hand dryers, or loud planes, or loud trains,

I don’t like the loud noise of busy roads,

I don’t like being separated from my parents, at all, not even for school,

I don’t sleep all through the night, so sometimes I’m incredibly tired

I don’t understand toilet training,

I like everything to have an associated colour, including numbers and words,

BUT

It hurts me when someone tells me I’m different,

I cry when another child hits me for flapping,

I do see you looking at me when I have a meltdown, thinking my behaviour is appalling,

I sometimes need reassurance of a dummy, even though I hear you say I’m too old,

I know I wear a nappy, there’s no need to stare and point at me, making me feel worse.

I wish I could explain this to you, but would you have time to sit down next to me and listen?

I want acceptance and understanding from you…just as if I was your pal with a broken leg. THEN I’ll be happy.

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This post was written by @KatieScarlett03 for her blog http://senminefield.blog.com/ she has kindly allowed me to share the post here ….

I mentioned in my last post how much a parent of a SEN child or even a parent who suspects they may have a child with SEN, needs the SEN Code of Practice . I cannot stress this enough.

When my eldest son with autism was at nursery, I watched his nursery teacher apply to the Local Authority for what was then known as Stage Three Funding (I think..It was a long time ago!) three times and get refused three times. At this stage he had been identified as having a social communication difficulty but even though we all thought autism, he did not get a formal diagnosis until he was about 6 . *Insert a blog about getting a diagnosis of autism here…* I left the matter in her hands because she was a lovely lady and I believed she was the “expert” and that she knew what she was doing. I was so grateful that she was trying to get help for my son and not kicking him out of nursery for his behaviour. I had no idea of the rights I had as a parent or of the role I could play in getting him the help he needed.

On transition to Reception (as it was known then, now it would be Foundation II I think) this lovely teacher applied to the LA for a Statement of Special Educational Needs for my son. I had no idea of what it was. I wasn’t even sure if I wanted my son to have one. I wanted my son to be normal and surely, if he had a Statement that would mean he was not? The difficulties of suspecting and coming to terms with any disability is a whole other blog subject that I will only ever touch on here. I remembered the teasing and segregation/isolation that “special needs” children used to get when I was at school and the derogatory way the term was and still is used. I understand from Twitter that Americans at the moment take offence to people using the word “retard” in a similar way. Did I really want my son to be one of those “special needs” children?

When the Local Authority wrote me a letter with their decision that they would not be giving my son a Statement, my first and biggest feeling was relief. Having all the information that they had on my son, they had decided, in their ultimate wisdom, that he did not need a Statement. They were the “experts” after all so they must have known what they were doing.

However, one conversation with an acquaintance whose child had a statement at that time, stuck in my mind and will stay there forever, although it’s probably not verbatim! I gave her my news that my son hadn’t been given a Statement and before I could tell her what a relief it was that “experts” had decided he didn’t need one, she said:

“You have to contest it, you really must. They always turn people down first time but if you contest it and make a fuss they might change their mind. It’s so important. I didn’t know for (her son) so he didn’t get his Statement until his last year at Primary and then it was too late” *Insert another blog about early intervention here…*

I remember doing a pretty good impression of a goldfish after her impassioned plea but had already made up my mind that the “experts” knew best and I was going to let their decision stand.

So it was that my son started Reception. The school gave him two hours of 1:1 support every day, ironically I suppose, from their general SEN budget, for the first half term to help him settle. When that was taken away his behaviour, which was a result of his autism, went from bad to worse. He would struggle all the way to school, hitting and kicking me and/or refusing to move. He was disruptive in class, he had meltdowns, he was violent towards other pupils and ended up striking his teacher in Year 1 because the teacher had tried to move him from his place in the line when they were lining up to leave the class room. As with many autistic children, he had to either lead or end a line. With no formal diagnosis and the limited help & understanding at a mainstream school that goes with one, no-one realised how important this was to him or that it was to do with his disability. I was told by the teacher that I was lucky he hadn’t had my son excluded.

Luckily (?) this incident led to my son jumping the Child and Adolescent Mental Health Services (CAMHS) waiting list and getting his diagnosis of autism in less than a week. It also led to me going to the Head Teacher to ask her to reinstate his 1:1 support. That is when she told me the school couldn’t afford to do that without a Statement and told me that it was my right as a parent to apply for one.

Thus begun my unsignposted journey into the minefield of Special Educational Needs where I left the “experts” behind and was soon to find my guide, the SEN Code of practice

A shared experience ” Scott”

my friend Sue has written about her and her sons achievements
well done Sue and Scott. .

Scott’s Story by Susan Taylor

My son Scott is 11yrs old and was diagnosed with Aspergers Syndrome in April 2012. This is his story of the struggles we have gone through to get him to where he is today..

Scott’s problems began not long after he started in Yr3, he struggled to settle in to the extra pressure and it wasn’t helped with his Primary School splitting the Yr3 and Yr4 classes and making two classes of mixed yrs. We spent alot of time at the school during Yr3 and Scott became labelled as a “problem child” which meant that if anything happened they always looked at Scott before anyone else even if it wasn’t Scott’s fault.

As time progressed Scott became more anxious and angry especially at school and this only got worse as he moved forward into Yr4. It was brought to our attention in a meeting with his Yr4 teacher and Scott’s headmistress that they thought that he had autism. My husband Paul and I were devastated because as parents it is the last thing that you want to hear that your child may have a long term problem. We agreed for his teachers to put Scott forward to be tested and see a specialist to see if the experts agreed.

Scott became more difficult as time went on not only at school but at home as well. He became very short tempered with alot of things especially with his younger brother William and would lash out at him, he also became very emotional, it was extremely hard to read his moods.

He also had panic attacks quite often at school but not a home because he thought of home as his safe place so we hadn’t seen what he could be like until I went to his Harvest Festival that year.

Now you must understand that until Yr4 Scott had always taken part in all of the performances that took place throughout the school year in previous years so we had no reason to think that there would be a problem.

I arrived in plenty of time and got a seat near the front so that Scott could see me, I was so proud to see him on stage as any mum would be. He kept biting his fingers but I just thought it was nerves. So the show started and his headmistress gave her usual speech before any performance and then one of the Yr5 children stood up and spoke about harvest time. I thought this will be good because I loved to hear Scott sing and perform but sadly it was not to be.

As soon as they all stood up to sing Scott freaked. In the space of about 10 seconds the emotion that went across his face went from calm to anger to fear and then tears. In those 10 seconds my heart broke and I knew that I had to get to my son and get him out of there. We left the hall and sat on the stairs outside together and after a few minutes Scott had calmed down and was talking to me about what had happened, he couldn’t understand why it had happened and in that moment I realised that yes my son had a problem.

We went home after school and everything was fine, I spoke to Paul later that evening about what had happened and I cried as I told him because I said that when it happened I thought to myself that this is not my little boy, he doesn’t normally do this but when I spoke to his teacher after the harvest festival he said that it was how Scott became when he had a panic attack.

We stepped up the urgency of getting Scott assessed so that we could help him as soon as possible. Scott saw a specialist a few times but the process still took ages, we had various home visits, different experts met Scott at school to see what he was like in that environment and all the while we were trying to help Scott come to terms with the fact that he may have a form of autism.

When Scott became angry it was more to do with the fact that he didn’t understand what he had and that we couldn’t help him as much as we wanted to because we didn’t know what form of autism he had.

Yr4 ended and he still struggled but in Yr5 we came to a turning point. It was in January 2012 when his Yr5 teacher had to have some time off because of having an operation which meant that they had to have a supply teacher. We thought this was going to be really difficult but we were completely wrong, his supply teacher was amazing with Scott. She knew exactly how to handle him and to get the best out of him. Scott adored her and he started to come round to the fact that he had autism.

Finally in Easter 2012 we received the news we had been waiting for that Scott had officially been diagnosed with Aspergers Syndrome. It was such a relief to know that it was Aspergers and that we could do some proper research about it and how to help him.

Since being diagnosed last year Scott has come a long way he also now has his special educational statement which means he gets the one to one help he has urgently needed. He is in Yr6 now and although he had a tough start to this year he is doing brilliantly now. We always take one day at a time with him but I am amazed with his progress and so proud of him.

His Yr6 teacher is brilliant with him and his teaching assistant who works with him one to one is absolutely amazing we can’t give her enough praise. Before Scott started Yr6 he would always wear his baseball cap in class and when he was feeling particularly anxious he would pull the cap down to cover his eyes. But only 2 wks in to Yr6 the cap was gone from lessons apart from P.E. Scott still has to have his hat when ever he goes outside but we are all fine with that.

Although we do still struggle with his moods at home and his temper towards William we are learning to read the signs and if needed we remove Scott to a separate room so that he can calm down.

Scott has a major fear to most tests but he has recently completed his Yr6 SATS and although we had a couple of false starts he has got fantastic marks. He has also started the transition from primary school to secondary school because he starts in September and the teachers from both schools have been amazing with him and very patient. Scott has got a place in the secondary school’s DSP (Designated Special Provisions) Unit which means he will continue to receive lots of help once he starts in September.

We do have problems finding information about things in our local area sometimes but with more research we will get there. I know that at the end of the day it is Scott that has to live with his Aspergers for the rest of his life but I know that he is a very intelligent wonderful boy and that as a family we will learn together.

So I say to you that when autism is mentioned for the first time you may feel like I did. I felt that my world was falling apart but I know from personal experience that you can get through it, you can accept it and live with it and as we tell Scott he doesn’t have a problem as alot of people look at it he is just special…

I hope that Scott’s story helps you understand a little more about Aspergers Syndrome and how honoured and proud I am to have Scott as my son

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Aspergers , education and us

today i have a guest post from a wonderful lady Jo on twitter who has allowed me to use a blog post of hers , shes @trinitytherapy

here is her story I received a letter from my 16 year old son’s college today containing his progress report. It was fantastic news! Distinctions in all aspects of his engineering course, comments such as “A is an active member of the group.” and, “He participates fully in class activities.”. I feel like a very proud Mum right now as any parent would, of course, but it feels all the more sweet knowing how he has struggled to get where he is today.

You see my son has Asperger’s, he was diagnosed at age 11 after what can only be described as a massive fight with the education system. He was always a bright child, soaring ahead in the SATs, way above his class level, he went to a good local school, one with a very good Ofsted report, but he hated it. He hated school. He hated the noise, the smell, the chaos, the playground games, the other children, it was one long 6 hour nightmare for him 5 days a week. We knew that he was quite a fussy child, things had to be ‘just so’, he preferred quiet play to raucous running around, he was sensitive, gentle, easily upset and emotional as a child. We didn’t know he had Asperger’s, all of these things we put down to just who he is and his personality. We made allowances that didn’t matter to us but meant the world to him, we never let different foods touch on the plate, never expected him to get dressed before breakfast, let him line up the teddy bears for 20 minutes before bed… And so on and so forth. All became part of his daily routine, and all served to keep him calm and relaxed as we also knew an upset A would lead to epic tantrums of the kind that we had never seen before and even our family seemed at a loss to understand and, I believe, thought we exaggerated at times. Unless you’d seen A have a meltdown (or any child with Autism) you’d never believe it.

We struggled, but we managed. He struggled, but he managed. He went to school and we talked to the teachers, we discussed difficulties with friends, we flagged up issues at school that made him anxious, and we suggested, on several occasions that something wasn’t quite right, only to be told that we were over anxious parents. He would come home from school and fall apart, he could never tell me why. We would be 30 minutes out of the school gates and he’d melt down… Totally gone. Kaboom. No warning, no lead up… Just BOOM! And there we were in the middle of a massive autistic meltdown with no knowledge of autism, meltdowns, triggers, calming, nothing… As you can imagine, we were lost and up a certain well known and unpleasant creek without so much as a boat never mind a paddle, and sinking fast.

We returned to the school for help, as coming home from school was the only common theme through all of the meltdowns. Poor A had the misfortune of having some particularly insensitive and quite frankly, old school teachers, real shouters too, the ones that humiliate the children as a form of control, that terrify them as a means to get work done… You know the type, the type we swore we’d never allow anywhere near our own children when we encountered them at school. Well, there was a little team of them in this school, self righteous, self inflated, self important teachers who had little regard for the children’s emotional well being. The SAT scores, of course, being the holy grail as it reflects how ‘good’ they are at their profession. Well, as I said, A did very well at SATs, he is a clever boy, has an amazing ability to retain information and a near photographic memory. And he was always very well behaved at school, albeit mostly out of utter terror of being singled out. But as far as they were concerned, absolutely no problem!

As time went on things got worse, his anxiety went through the roof and it was a struggle getting him to school every day, even the night before became a long drawn out process and as he wasn’t (and still isn’t) much of a sleeper, his stress relief was organising and reorganising teddy bears, sorting little toys from cereal boxes, getting in and out of bed because there was a noise, a funny smell, a scratchy label in his PJs, this could go on all night.

There were a few ridiculous incidents with teachers that should never have happened to any child and my visits up to the school were becoming more and more frequent, much to their annoyance. I even had the SENCo tell me, when I suggested Autism, that I clearly had no idea what Autism is and that I was being ‘silly’!

So, when he was 10 years old, I decided to homeschool. I took him and our daughter out of the school and took over their education for four years. It wasn’t easy, it wasn’t perfect, at times I wasn’t even very good at it myself, but it was better than school, and at the very least it was better than THAT school. We had lots of fun, we had lots of hard times. When my youngest son was born, A had his first proper and huge episode of OCD and was so terrified of germs that he washed his hands about 50 times a day, until the skin cracked and broken, he was anxious constantly. He once stopped eating for about 12 weeks, and I mean literally stopped eating, he had developed a phobia of choking and couldn’t swallow solid foods, he went down to a dangerously low weight very, very fast and terrified us. Since then he has self-harmed, smashed his bedroom to pieces on several occasions, had weeks and weeks of crippling panic attacks, he has been a teenager, a normal, stroppy, rude, belligerent teenager too!

He went back into school in year 9 (third year for us oldies) and had all of the support that he needed because of his diagnosis and a subsequent fight with the LEA to provide a statement and the funds for what his educational needs were. School for those last three years was a struggle too, but with hard work and perseverance from A and some amazing TAs and SENCo support we helped him through it and we helped him to gain the GCSEs necessary to get a place at college.

We have fought, he has fought, he has overcome some seriously big and difficult obstacles and he is now at college, with support there too, enjoying his course and doing very well, with a great group of friends and a part time job!

Simple stuff, but the stuff made of dreams when you are the parent of a child with Asperger’s or Autism.

To all of the parents I know that are still fighting, I am in awe of you and I know how it feels. But I know that it’s all worth it too and I hope that reading this gives you a little extra strength to get you through the tough times, our children are so worth it.

Tomorrow it’s his 17th birthday. 17 years since this wonderful, unique and remarkable human being was given to me to take care of. And though it has been a tough road, I can say with absolute honesty what an amazing privilege it has been. We are only part of the way through this journey, and there is more yet to come.

I love you A. Very, very well done and Happy Birthday!

Love Mum. x

thankyou for sharing this post !
jo’s blog can be found here
http://gaiamojo.wordpress.com/

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From grief to acceptance

@MumForAutism has very kindly allowed me to share this post from her blog

I read an autism article the other day. It was in one of our national newspapers and attracted a lot of heated discussion. One thread that caught my attention was a series of exchanges between people about the impact of learning about your child’s autism. The exchange went along the lines of a parent saying how sorry she was that another parent had received an autism diagnosis for their child. However the condolence was seen as insulting by another person who felt that saying sorry was a slur against autistic people.

I can understand this. I think no matter how well meaning someone may be, saying sorry can imply that autism is a bad thing to have. Of course, that depends on the severity of the autism. Some people can lead full and purposeful lives (not without difficulty of course) but for others it is a very disabling condition. In these circumstances, expressing sympathy to a family can be an attempt to offer support and friendship. It is rarely meant with malice though I can understand the unintended consequences at the use of such clumsy language.

However, the fact is that many parents go through an emotional period following their child’s diagnosis. I know I did. The realisation that my children had a lifelong condition led me to experience a wave of emotions as I adjusted to their diagnoses. You can read more about it here but essentially it was a time of letting go of my expectations of family life and embrace a whole new way of thinking and doing. It took a while to adjust but eventually I came to see what a wonderful family I had.

Nevertheless back then (5 years ago now) I did not expect to feel the way I did and neither was I prepared for it. Disability was not something I was familiar with. Except for my grandmother who suffered from alzheimers and my near life-changing car accident I knew little about disability. At the time disability was something that happened to someone else, notably an older someone else. It couldn’t possibly happen to us, right? Wrong, it did and when it happened I felt a sense of shock and sadness as I grappled with what it meant for my children.

I know a lot of people doubt that SEN parents can experience any sort of loss but this was how I felt, a very real experience that some say is akin to grief. It may sound strange to non-parents but the bond between parent and child is so entwined that whatever happens to our children we feel very acutely too. We love our children unconditionally and we want the best for them and we aspire for the best for them and when things happen that challenge those dreams we can sometimes feel a sense of loss. It’s the way it is; it is not a slur on autism or autistic people but a way of adjusting to a different life.

For me acknowledging my feelings has helped me to move to a better place when I can truly say “do you know what, this life I have been given is so much better than the one I dreamt of”. I have come to accept my children for who they are, not what I hoped they would be and in doing so I have learnt so much about the wonders of ASD.

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