lets talk aspergers

Why because? Because we should

Aspergers is something that is very close to my heart. Being a mother of two fantastic children is a wonderful thing as I’m guessing many mothers would quote. This blog has been created as a place that allows me to express myself, get heard, raise awareness, rant and rave and most importantly share. I want to share my amazing son with the world. WHY? Because he has aspergers and i want to show the world that having a child with ASD doesn’t mean the end of the world. Yes it can be hard work but that’s motherhood and i love it.

Want this blog to reach out to other parents that like myself have just taken that big step into the Aspergers/ASD world

Glitter Graphics

A complete Injustice.

Last night I was on Twitter when I came across a tweet  about a young man called Gomey who had been removed from his home and family by force.

Gomey is 19 years old-young man who has high functioning autism. He lives with his family who like me and many others have to deal with the challenges that autism brings. His family have overcome many issues and were settled into a pretty good routine that left Gomey  feeling happy and settled.

Then things changed. A new social worker visited Gomey for less than an hour and took it apron herself to break up a very happy family She got a court order that stated Gomey was a danger to himself and others. It was even said that Gomey was suicidal. Professionals and family or anybody who knew him knew this wasn’t the case. Gomey was then taken from his home by force by 6 police officers and several social workers and placed in a psychiatric hospital .

despite the doctor at the hospital telling his family that Gomey doesn’t self mutilate and is no danger to others or himself he is still there. It has been said that he has to stay in the hospital for at least 21 days.

This is just my comments please read the full story by visiting Action for Autism. Ad please repost the link for the story on your blogs, websites and social networks. They also have support badges and buttons like the one I have in my sidebar for you to use on your blogs.

As a mother of a child with Asperger’s this story really hit me. What if this was my child. What would I do. We owe it to Gomey, His family and every other person in the world on the spectrum to help this family get their son back to the comfort of his own home.

AT LAST UPDATED VIDEO’S

Yep your more than welcome to say it! The videos on my vodpod widget haven’t changed  forever.

Every time I have logged in which I must add has been a great deal this last week. updating the vodpod was always my number one Intention ! So why have I only just managed to do it today then. I’m sure that being a mummy to a 3rd child is making me lose my marbles.

What I found so hugely funny was the fact that  5 hours later the Mac is still running I have been on and of between feeds and nappy changes and some how in this time my vodpod is still being neglected. Come on woman it’s just a few videos get on with it! Well after god knows how many months  here I am with a newly updated pod. Yes it’s back at it’s best and displaying some well-chosen, informative and educational  autism related video’s.

I know what your thinking! They better be something special as we have had to make do with the old stuff  lol. Well got a little bit of everything so I’m sure you will find one you like.  As always any feedback via the blog comments would be fantastic. This way I get some ideas on what video’s I need to be displaying. If anybody finds a great video that want to share send me the URL and I will get on to it.

SPREADING THE WORD

Just a short post everyone.

Wanted you all to know that I have now started a facebook group and Fan page.  Both are doing well and I’m enjoying  raising awareness for ASD. Both are linked to the blog and I have found it a great way to get more parents reading and sharing their story’s on autism.

Everybody is welcome to become a fan or join the group. All that is required is you’re a facebook member. You are all welcome to add the link to your blogs, notes, videos and more. The best part about being a member is that you help me spread the word and raise awareness for Autism & Asperger’s. We owe it to our children to be their voice and speak out for them because who else will ?

If your interested both group and page are called A boy with Asperger’s

If you have trouble with the link then just type A boy with Asperger’s into the search page on facebook.

WASH YOUR MOUTH OUT.

What do you do when your 9 yr old Aspie son developes a taste for bad language?

I have to say that I don’t think I have the answer. I’m lost and at my wit’s end. Not only do I feel that I have lost control of the situation I also feel that everyone else is thinking the same thing. I got passed the looks and rude comments pushed apron me from other parents or members of the public. As I wrote in a past post some months ago I’m not going to feel like I have to explain every single thing little man does or action I take to deal with it. Yer I used to do this but I was losing the battle. How can you get the world to see things in a different light. Some people will always be stuck in their ways and little old me can’t do much to change it. It’s just that old fashion way of  thinking. There is no such Thing as autism or in our day it was just called bad behaviour. Yes I want to raise awareness for ASD and hope people do begin to see past bad behaviour in children on the spectrum but there is only so much you can do. The thing is Little mans use of swear words has become so bad Its making me avoid taking him anywhere. I can’t help worrying what others think when they hear his disgusting fool language during an outburst of rage. I tell him off though my tears of shame. My father used to go ballistic if me or my brothers and sister swore. If we ever dared swear at an adult we would be punished to the highest standards but saying that I don’t think it ever happened. We were pretty polite children. I try to stress how important it is not to swear, I tell him it doesn’t sound big, clever or cool. Sadly I just think that now his using certain words without even thinking. A swear word seems to appear in every other sentence and a habit is forming . A very embarrassing habit! As a parent to a child with Asperers I feel that life will alway hand you a problem to try and over come. Once you have mastered it something else comes along. It’s like one long test. But as a friend once told me God will only dish out what he thinks you can handle. Being a parent full stop is a learning game we parents of the ASD child just have a little extra to get through. I guess I’m just finding this one a little harder to overcome.

Techniques I have tried to help stop little mans use of bad language.

• Taking away his belongings.
• No playing  outside with his friend next door.
• No treats.
• Pocket money lost or reduced.

I know that following a punishment though is important with all children. there times I caved but as the behaviour has become worse I have  stood my ground and Little man has hindered his punishment but still with no long-lasting effects. So this is to all you parents out their that have been though it. I need your advice! How do I reduce his swearing and then finally stop it?  All suggestion welcome from parents with or without children on the spectrum.

Something has got to be done. If little man is like this with me and other family members he must be using the same language in the classroom. I already know he is rude to stuff and has problems separating Children and adults so I think that this could be highly likely.

MUM’S TELL IT LIKE IT IS.

Well the blog has been going for quite sometime now. In this time I have heard back from many other parents like myself with children on the autistic spectrum. It’s been a great way to bring us mums together and share our experiences. Some great comments have been posted, some interesting interviews taken place and I am pleased to say some great friends have  been made. When I started writing  A boy with Asperger’s back in October 2008 it was for many reasons. Raising awareness for a condition that was very close to my heart  was one of them. But I also had a great deal more to learn about it. I feel that as well as give something I gained so much more from writing this blog . It was a wonderful thing to have found and connected with so many others that like me were on a roller coaster of ups and downs when facing a world that so many other people were yet to understand. I guess I kind of made it my goal to raise awareness for ASD. My child and many others needed to be understood.  Even if the blog only reached a few people and them few gained a better understanding at least that was something. Well  I really can’t ask for better support with the blog . Over the last 16 months we have had huge numbers of readers and many other blogs and sites have linked up to us or added us to their listings. I really am grateful for this:)

Well It’s been sometime since the blog had a monthly feature. I was so busy with the pregnancy and stuff  that sadly the Big interview had to stop. I really do miss it! and for this reason have decided to bring something new to the readers.

MUMS TELL IT LIKE IT IS!

The idea for the feature came to me when I was reading some of the many comments left on the blog by other parents. Each month I want to hear from a parent of a child on the spectrum this will be their chance to get heard and reach out to others and join me in raising awareness for Autism. Each month will have a topic of conversation. Like Sensory sensitivity, Obsessive interest, Autism at school and so on. So if you want to get heard and share your story with others then here is the place to do it.

SENSORY SENSITIVITY

This is our frist topic of conversation so if anyone is intrested and wants to be our first mum to tell it like it is then waste no time in contacting me by leaving a comment with a contact email address. The big interview was a great feature that did fantastic and was a real hit. I’m sure if we all come together mums  tell it like it is will do just as well.

A DAY IN COURT

So a few days ago was court day and I just fault It would be a good idea to post an update on how it’s all going!

Well the 27th was just the date I needed to attend to enter my plea, you know the whole guilty not guilty thing! Well is was going to be as easy as that. All I had to do was decide what way to go ( Of course guilty was not an option ) So I knew what was going to happen. Let’s not forget I have taken this road before when Little mans school tried pulling this one on me back in 2008. Basically things were going to be pretty straight forward at this first hearing. It was a case of me putting my plea to the magistrate then being informed that this meant attending crown court and a hearing date would be sent to me in the post. Then I would be free to go and carry on my war with the school from home. As easy as that! Well so I fault!

Yep things never really seem to go as planed in my world, god complicated is my middle name. Nothing seemed to be going well from the moment I got out of bed that morning. After a crazy half hour running around trying to find the court letter so I could check the time it was to take place I then had to do a million and one other things. I know what your thinking. Wow what an unorganized woman. Ok I guess I can be pretty slack but things around here have been a touch hectic. My new baby boy has been quite unwell and needed to be admitted to hospital and of course I stayed with him. After 6 days and what felt like forever we returned home only for me to come down with the Norovirus which has spread around our hospitals like wild fire. So to be honest I wasn’t really 100% that morning and who can blame me.  Well just when I was convinced I was ready to call for a taxi my son decided he wanted  feeding and was screaming down the place like a crazy baby. With this I decided it may be best to leave him with daddy. Yes I was going to take him with me. Court may not be the best place in the world for a baby but as I said it was going to be an in out job and plans were made for me and baby once court was dealt with . But with this I knew it was best to go alone. Feeding him in the taxi would just be a hassle. So already running late I made up a bottle for my husband to give him, changed him called a taxi and was out the door reaching court a little late.

I let myself be seen by the Clark and with that took a seat and waited to be called.

I waited and waited. Hello is this sodding case ever gonna be heard? Come on I was listed for 2 p.m. and I made it a little after 3.30 p.m. Thank goodness I had someone collecting the children from school because I sure as hell wasn’t gonna be. The waiting room was no longer bursting at its seams, I could run laps in it if I really wanted to because me and my friend ( She meet me there for a little support ) were just about the only ones left. I was starting to wonder if the place had closed and forgot we were upstairs in court room 2 STILL WAITING.

eventually the Clark came out from on of the many rooms and asked me why I was there? Great you got to be joking! Um let me see, It wasn’t for my health or because Magistrates Courts were fun places to hang out in. So maybe I had a plea to give. With this she gave me a look and ask if I was late. Well I told her only just but she denied seeing me and told me it had already been dealt. Ok so not only have I sat here like a complete twat but this would mean the judge would have ruled in favor of the school and I would be awaiting my punishment.

The rude Clark ( Sorry I had to add that ) went of to the Court room to see what the outcome for me was. You have to attend on the 10th Feb she told me. And I think you will have to give your plea then. Should I be pleased that it was postponed? Yes but now the judge would think I hadn’t turned up and what a great start that was going to be. Oh well just another wasted day brought about by the school that causes me nothing but grief. Ok I was kinda to blame with my late start but come on who brought me here in the first place. EXACTLY.

STATEMENT OF SPECIAL EDUCATIONAL NEEDS

Ok so you get that formal diagnosis the one that has taken so long to get. After many assessments and meeting have taken place it’s all complete and filed. Yes my child has been diagnosed as having a life long condition but relief floods over you. At long last we can move on! Carry on with life and just get on with it. The assessment process on little man took forever and I know thats exactly how I felt. I had a lot to learn and after talking with other parents of child on the autistic spectrum, reading and just understanding my son I learned a little more each day. However and not surprising There was something I hadn’t learnt. I didn’t have a clue about SEN. Yes I now understood an awful deal about my sons condition Aspergers but what in the world did the word SEN represent. Well lucky for me that was before and that since then I discovered this stood for special educational needs. This was something I stupidly assumed would apply to my son. Well he has a  social & communication disorder, meaning that surely extra help would be on offer for him when it came to schooling. You know from my last angry and frustrated post that little man and SEN don’t go together. Help, extra services what the hell is that ? As I write this I will try my hardest to contain myself. But It’s hard as thinking about the extra support that little man has so crawly been deprived of makes me a tad crazy. But that was far from the end of my frustration

as too much to my horror It turns out having a formal diagnosis of Aspergers is not enough! Shocking I know. It’s up to the school to decide if your child is entitled to or requires any extra educational help. Well god help me! This is the school that labeled my child as having behavioral problems after telling me and others on a number of different occasions that little man was well – behaved in school and showed no concerns. This is also the school who sat and spoke with myself and little mans doctor about his diagnosis, introduced me to the school Senco only to recently inform me that they don’t have a written record of his diagnosis. How on earth is this going to happen? So just when you think the long process of assessments and meetings have come to an end it turns out they have only just begun. In order for your child to access the education that is right for his particular needs an assessment for a statement of needs has to be completed. This is not a day thing but could be a minimum of 6 long weeks. Yes it’s a long time when you are at breaking point and need a school move asap.

So now I wait to see if an assessment can go ahead. The decision to assess is made by the local education authority and in some cases can be refused. It gets better! After inquiring I have been told to state my concerns leading to the request of an assessment. Well from what the school, other parents and children and my son have noted back to me this is some of what I have come up with and I am putting it to you guys before the authority for some much-needed advice and opinions.

1. Giovanni has problems building relationships with other children with in his school. This makes attending a problem as fear of bullying and rejection.
2. Finds some of the chosen work un challenging and some to challenging but will not ask for help so therefore will just refuse to do it.
3. Has issues with using school toilet facilities though fear of the doors becoming locked and also their cleanliness. This has caused a number of problems as I have often had to collect him and bring him home to go.
4. His outspokenness  has a tendency  to get him into trouble with this being confused with rudeness to other children and staff meaning at times he has unfairly been punished.
5. Giovanni not eating despite bringing in a packed lunch. Mainly because he wont eat in front of others or maybe another reason that I am not aware of just yet.
6. The disturbing fact that staff are sometimes unaware of Giovanni not being present at lunch. I then discover He has not eaten a packed lunch for weeks at a time.
7. His fear of changing for PE in front of others meaning a reluctance to take part or even attend school on them days.
8. stereo type behavior on Giovanni’s part.
9. Frustration with others not understanding his way of thinking causing him to have outburst and lash out. His taken a door of its hinges by kicking it.
10. His need for routine. When ever there is a temporary teacher teaching class he always has problems throughout the day. Mostly being behavioral. This is due to the sudden change. He is also deeply upset if a teacher that has become close to him leaves the school on a permanent basis.

these are just a few of my main concerns and I feel his current school are not equipped to deal with some if not all of them given recent findings and revelations. The school that I wish to place little man at is a school for children on the autistic spectrum including Aspergers, as well as other learning difficulties and certain disabilities. As my child clearly falls into this category I’m hoping he can be offered a place as soon as one is opened. The school has fantastic reviews and always hits its yearly targets. It would be both wonderful and exciting for me and little man for him to be excepted into this school.

You gotta be kidding me!!

As most of you may already know I’m a mother of a 9 year old boy that has been diagnosed with Asperger’s. You may also have read in past post that over the last few years I have had many problems with my sons schooling. Well just when I thought things were finally improving they have become so much worse. I received a letter a few weeks back informing me that I have been summons to court for the time off school little man had last year. Are you kidding me! What a joke.  I was informed that as a parent of a child with a formal diagnosis of Aspergers I myself and my child would receive a great deal more help and more services would be on other to us. This has not been the case and to be honest I’m sick of the way my sons school have treated my son and my family. This stems back for a long time and I’m sure at some point I have mentioned just a few of the many problems I have experienced with little mans school life. Yes his attendance was not the best but this was for reasons beyond my control, reasons I feel could of been avoided if more help and services were on offer. At the beginning and the best part of last year I had problems with little mans sleeping patten. Problem was he didn’t seem to have much of a patten! Most will know that children on the autistic spectrum live their lives dominated mostly by a routine. Without routine things seem to go a little of the rail so to speak. But most will also know that getting a bedtime routine into place for a child with Autism/Asperger’s is also a pretty hard task in itself. Little mans bedtime routine was practically none existent. He had no issue with spending the whole night awake. I don’t mean getting up several times in the night I mean not sleeping till 5-6am in the morning. Yes this is a huge problem when he needs to be in school for 8.55am and so by 7 am it would be a good idea for him to be getting ready. But I could only dream. It would be a long and tiring ordeal to get him ready and into school. There would be screaming and swearing on his part that is and he would nearly always refuse to get up let alone get dressed. Let’s not forget I’m sleep deprived too. What also makes me mad is at least half of these absences are in fact not absences at all! More like lateness. If the children are in school past 9.15 am which is the time they shut the main gate meaning all children must report to the school office, then the child will be marked in as attending just half the day. They will lose their morning mark. But if there is a fire the school are well aware that the child is in fact in and not absent. So all the mornings missed are then added to make full days and then added to their over all attendance. Are you thinking what I’m thinking?? How in gods name can this be the case. This makes the case against me in court look a great deal worse. There was many days in which the children, I say children as I’m including my daughter have got into school way past 9.15 am. When I expressed my concerns to the school about little man’s refusal and reluctance to go to school and this matter making him and indeed my daughter overly late for school I was assured that bringing him rather them not bringing him was most  defiantly the best option. When I did the office staff were nearly always rude and made me feel like a naughty school girl. No matter how hard things become and how much I asked for help I still struggled on alone. I did however get our doctor to prescribe the natural medication Melatonin. This has helped but took time for everything to come together. We still had to get him used to the meds and settled into a routine. It’s only been since around the end of last year that huge improvements have been noted. And since then a large improvement has been made with little mans schooling in terms of lateness and overall attendance. However his behavior at school has taken a turn for the worse with many more letters and phone calls being made to me to report his bad and unmanageable behavior. This has to be due to the fact he is sleeping much better so has a lot more energy to get rid off though out the day. With this turn around I feel as if I have gone from one huge problem to another. At least at long last they see a different side to him. As It was fault that most of his undesirable behavior was happening at home and at school he was a more manageable child. I’m not pleased for his unruly behavior but now you must be able to see my parenting skills are not to blame.

So you may think that the improvements that have occurred towards the end of last year and this year would be enough to stop any future court action from going a head. Well it don’t look that way. I feel that after many meetings that have taken place and just as many promises that have been made I would be receiving some help with little man instead of having to stress about a court date right on top of just having had a baby. Why wont you just help me that way we both get what we want! Better attendance and most of all a better education for little man. Well with this latest kick in the teeth and a string of other problems and broken promises I have taken it upon myself to try my upmost hardest to remove my son from his current school placement and into one witch is better suited to his needs. A school that looks at helping the child achieve their goals and lead a full and happy school life. And this way he would be picked up for school and I can concentrate on getting my daughter to school on time. Yes sounds like a win win situation. You would think so! but firstly I have to get his uncooperative school to statement him. He has Aspergers and this is something that still has not taken place on their part. After a recent phone call with the new deputy head and senco of the school I was told much to my disbelief that she was not aware of him having Aspergers and she had no notes on the matter. She then went on to label him to be a child that suffered merely with behavioral problems and instead of one to one education and extra help he just needed to undergo behavior modification. This is the straw that broke the camels back! How bloody dare she. My son has a recognized fully diagnosed condition in which I am registered as his full time carer and have done everything in my power to work with the school and not against. It was not long ago you proceeded to say the problem behavior I reported was not a problem that you experienced with him in school hours and now he has a behavioral problem!!! Crazy cow.

With this I will deal with the court case and then seek advice on removing him with out delay. I think I have a solid case to do so. How is it that with a diagnosis of Aspergers my son receives no SEN at school he has no statement and worse still you have no record he was ever diagnosed despite the fact we have had meetings on the matter and  I have a letter from the school stating you have received his diagnosis in the post.

If anybody has any advise what so ever it would be greatly appreciated. I live in the UK and my son attend a mainstream primary school.

A new year a new decade

I remember writing my first post for this blog. Wow so much has changed  since then and  I must say  mostly for the better. Little man is growing to be a very smart and level-headed young man who really knows what he wants. I’m so very proud at the progress my son has and still is making. It really proves that life with Aspergers doesn’t have to be a bad thing! I have always stated that I would never change my son, Yes many things would be easier if Aspergers wasn’t in the frame but it is and always will be so it’s best to embrace it rather than hide it or try to run from it. I love my son and he amazes me  his intelligence is a great gift, His diffuseness is also in more ways than not a great thing. I feel that with each day that passes I learn a little more and understand a bit more about the way his mind works. Don’t get me wrong life is far from easy, Little man still has problems at school just different ones from before. At the start of last year it was hard to even get him to go to school and when he did he was nearly always late:( This was becoming a huge problem as it was also affecting his sisters schooling and I even had to attend court ( I’m still dealing with this today ) Now his going better his having more problems once there. It seems He is missing a lot of playtimes as he is not following instructions from playground stuff and at times can be rude when his angry about something. I even got a letter informing me he had kicked a door of its hings. We also still have the huge problem with him not eating his packed lunch no matter what I give him. With all this stuff and more the craziness is little man seems much better at home. His sleeping has improved with the help of his melatonin and with this his more relaxed. However his swearing is on the rise and I’m really not happy about that.

Little mans relationship with his sister is pretty much the same as before sadly his still having problems with hitting and I feel very sorry for her. He tries playing with her but his still very bossy and completely takes over the game. It’s all on his terms she becomes upset and this is when the fighting begins. His relationship with his new baby brother is somewhat different. Yes his a newborn so he can’t play with him but little man has shown him a very loving side in which he rarely  shares. He is very good with his brother and enjoys helping. He is showing so much love for him and expressing feelings that he sometimes finds hard to express. He said when holding Harley ( His brother ) That this was the best day of his life:) I had just given birth and hearing this I had tears in my eyes. It was magic.

Giovanni has also managed to form a strong friendship with another child that lives a few doors up. He shares many of little mans special interests like trains and buses.They also attend the same school so walk together in the morning. It’s just on the next street from our home so were fine with this. Little man seems much more happier to get up dressed and ready for school now

2009 has had both it’s ups and downs. I’m Looking forward to seeing what both 2010 and the next decade will bring . With a new member of the family and little mans greater understanding of the world i’m sure it’s gonna be a good one.

Little man has a new baby brother.

Well its been sometime since I last updated the blog and man has life been busy but oh so great

I have given birth to an adorable son who we named Harley. He is amazing and has made our family whole. Both Alice and little man love having a baby brother to fuss over. I was worried how Little man would deal with all the changes but he loves being  a big brother for the second time. When he came to visit me and meet his baby brother in the hospital he held him looked up at me and said it was the best day of his life. It melted my heart.

Since baby Harley has been home both the children have had to adjust a little. Little man is a very LOUD child. He don’t mean to be its just one of his many ways. Yes there has been a few times his woke the baby but its early days and I’m sure he will soon learn. School has been ok for little man apart from the problems his having with listening to the playground staff and temp teaching staff ( I think thats all to do with not liking change ) He has been on his red card a few times this term and has visited the head He was reported to have kicked a door so hard it came of its hings. I’m due to speak with the head about the matter after the Christmas period. Speaking of Christmas this year it was one of the best so far Having a new baby was a fantastic Christmas present. Little man loved everything he got and It was lovely to see him so happy. He has never been a lover of toys and I have learned to not try to make him interested in them as it’s a waste of money and if he wants to have pad locks and safes because it makes him happy thats what he shall have. He still loves trains and buses so he also loved the Hornby train set he got.

Well thanks all for reading , hoping to be able to get on here and blog a little more often  as gotta say I’ve missed it.