Tag Archives: support group

#HAWMC DAY 13 – The 10 things I can’t live without!

13 Apr

The health activist writers month challenge (#HAWMC) is in full swing and I’m really quite enjoying the daily prompts. However, I wasn’t overly keen on today’s but given this is meant to be a challenge, I didn’t bail out.

 So, when asked what 10 things I couldn’t live without, I got my thinking cap on…

 

1) My Children: Obviously the first thing I’ll list is this! My children, they’re my everything, my who entire life, the reason I breath. A life without my kids truly isn’t worth living!

 

2) Friends and family: My mother and father who reared me and made me the person I am today. Friends who have been amazing through some of the most difficult times of my life… I’m truly thankful to you all, if only you all knew how much!

 

3) Health: I want to be around for many years. I want to watch my children grow and evolve into adults, finish education, get there first job, get married and invite me for Sunday lunch.

 

4) My blog: How superficial you may think? But this is my outlet, a place to let of steam, share any happiness and achievements along the way. It’s got me through tough times, provided a connection to something I never knew existed. Who would ever think a blog could save someone? It saved me from insanity, that I’m thankful for!

 

5) Passion: It’s what drives me to do the thinks I do. To live without passion would be like living without food and water for me!

 

6) Dreams: Whether they amount to anything is totally irrelevant, they keep me smiling and give me something to aim for… surely we all have a dream?

 

7) A Voice: No I can’t sing (I actually recall my mother telling me I sound somewhat like a cat crying out in agony) but it does give me a way to speak up when it comes to the things I believe in! It’s helped me to raise awareness for autism and aspergers as-well as a number of other charities and campaigns. I’ve realised how powerful a tool one persons voice can be, you’ve just got to know how to use it!

 

8) Technology: I can just imagine my grandmother shaking her head if she was alive to read this! Yes, she would likely tell me and in no uncertain terms, that In her day people spoke to each other face to face, not all this texting and emailing rubbish! But we are now living in a modern world, one where my Mac and my iphone have become something of a second skin. These tools along with the rise in social networking sites have provide me with more than just a way to communicate with those out of reach but has also provided me with a platform to raise awareness for something I believe in and feel passion towards! The facebook support page now has over 5,000 members and continues to grow, I love that it’s become a place for parents like myself to gain support and friendship with those who relate most. I’ve also found a place to release inner creativity, experience things I otherwise couldn’t or wouldn’t have! And along the way I’ve meet some amazing people, some Im pleased to have become firm friends with.

 

9) A Little Me Time: Sounds a strange one but without it I’d go absolutely bonkers… I’m sure of it! I may not get a whole heap of it but what I do get I fully appreciate it.

 

10) Memory’s: It’s memorise both good and bad that help me mould my future. I am able to learn from past mistakes, avoiding any recurring undesirable situations. Those help memories keep me smiling when times are difficult… Memories really do help create a more positive future. 

And an extra one for good measure…

A sense of humour, the ability to laugh at yourself. Life is a serious affair but a bit of laughter is good for the mind!

 

Post 13/30 #HAWMC set by wego health

Are you unintentionally taking from a child with additional/complex needs or a serious illness

28 Jan

As a parent to a child with Aspergers Syndrome who writes about the condition and runs a support group, I’ve come to hear about a number of charitable organisations designed to assist the child with additional/complex needs or serious illness along with their families! One of these organisations is the ‘Family Fund’ an organisation that’s aim is to assist those families described above in way of providing them with grants to assist in a number of areas. This can be in a way of providing families with a means to purchase essentials, such as a washing machine to replace one that has broken, a contribution to a parents driving lessons to make getting about far easier, family fund even provide families with vouchers to enable them to enjoy a family break together in UK resorts such as Haven and Butlin’s holiday camps. Some families are even offered assistance to enable them to enjoy a trip aboard and this is done in way of providing the family with ‘Thomas Cook Holiday Vouchers’ known as the “Happy Holiday Vouchers” 

 However, lately it would seem that a certain number of families are accruing such assistance on false pretences. This is being achieved as it has come to light that a certain number of applicants are falsely obtaining Thomas Cook vouchers, only to sell them on for their own financial gain.

 Family fund has recently highlighted how huge a problem this is becoming as more and more reports are being given by the public, all stating that they have either been offered these vouchers to buy at a reduce price, of that of their overall value, or they have come across advertisements/ads on Facebook groups from members trying to sell this vouchers. 

 Family fund regrettably cannot help everybody that applies and due to the growing numbers of applications made on a yearly basis, its pretty common for the fund to offer an award much smaller than they would have liked to give. The families who are obtaining these vouchers for they own greedy need, are actually depriving families who could really benefit from such help. 

 Despite the difficult funding environment of today, the Family Fund continue to assist as many families as they possibly can with the added help of donations and fundraisers stepping in to offer their help. The Funds last annual review of 2010/2011 shows how the fund was able to help support some 56,700 families across the UK. Yet, we now have to ask ourselves, just how many applications were in fact genuine? 

 What is somewhat harder for me and many others, to understand, is the fact that those selling tickets online are actually families of a child with a serious illness or disability! These parents should know more than anyone how much these grants make a difference to those families applying. They are not only depriving their own child, but hundreds more, by gaining tickets given in good will, only to sell them to gain 100% profit. 

 Have you recently brought any of these tickets? Have you seen any “Thomas Cook Holiday Vouchers” known as the “Happy Holiday Vouchers” which clearly display the family fund logo, being sold on facebook groups or pages? Maybe you have seem them on local parenting pages or free ads like gum tree or even Ebay as displayed here

 I decided to blog about this today as I have many parenting bloggers on my reading list as well as twitter and facebook list. Like me many of these readers/followers use such forums and I am asking for you all to keep a watchful eye out for these vouchers.

 If you do see any, or have accidently obtained some, please contact the Family Fund on their Facebook Page and help stop the unlawful selling of these tickets and also the reissuing of these tickets to the families involved! Remember, members of the Family Fund can apply on a yearly basis, we need to stop the scum in their tracks!

 Thanks for reading 

Claire Louise

Understanding The Diagnostics Of Autism And Aspergers Syndrome

13 Jan

Today, when I thought about writing this post I had this strong urge to kick my own arse, as I asked myself the question… “Why haven’t I written this post already”

The Facebook page is now reaching numbers of 5,000 + and although that’s great, it still shows how many more children are being diagnosed as being on the autism spectrum, that or the high numbers of parents seeking a diagnosis and therefore seeking out advice on something they long to understand…. “The Diagnostics of autism”

Subject: Quinn, a boy with autism, and the lin...

Image via Wikipedia

This basically means the different tests and routes undertaken in-order to diagnosis a child as being on the autism spectrum, and it’s this I want to write about here today.

Firstly I should make it crystal clear that there is no set procedure, some places, areas and countries do it differently to another. However, the most important thing to remember before delving in any further is, “One child may be diagnosed in record time, another it may take longer, one child may only see two professionals whereas another…. they may meet hundreds!  

I’m situated in the United Kingdom and my son, now 11 years old, was formally diagnosed in early 2009 as having ‘Asperger’s Syndrome’

One of the common misconceptions made by parents (including myself) is when a child psychologist informs you that your child is indeed on the autism spectrum… you then understandably think you’re child was just diagnosed! Com-on, why the hell wouldn’t you, he just sat there and said it didn’t he? You’re child normally isn’t actually diagnosed and normally it will be a while till they actually are. I remember being told on my first visit, Little man was most likely on the autism spectrum with Aspergers Syndrome being the most appropriate title! Yes, he rambled on about coming back on this date to have this elevation & that observation done, but he said it… I bloody heard him! You’re child isn’t technically diagnosed till them words hit paper, that’s when it matters, that’s when it counts and means anything to schools and services in your local area! I learnt this the hard way, Little man’s mainstream school wrote it off completely, they proceeded to do sod all, that was in-till they saw it there in black & white some two years later! Remember it’s not always so long, actually it should never be this long! We had problems with certain doctors and the schools input didn’t help, we actually had to re-enter the waiting list when the person taking care of Little man’s notes was dismissed, meaning little man was missed completely. Anyhow… My point… when there is still testing to be done and you don’t yet have that paper with the title of any diagnosis, then the likelihood that you actually don’t have one yet… Is, well… quite certain!

Below I’ve posted some of the diagnostic tools you may come across if your child is being assessed for an autism spectrum condition or Aspergers Syndrome.

Aspergers Syndrome Diagnostic Scale (ASDS)

Diagnostic tool used on those between the ages of 5-18 years old as a diagnostic tool. 

Method: Parent/teacher questionnaire made up of 50 questions which are rated and therefore indicate the presence or absence of behaviour mostly associated with Aspergers. The scores give the tester an indication on the probability of a diagnosis of Aspergers syndrome. This is a diagnostic tool, though its rarely used alone when diagnosis a child with Aspergers The above test was one of the tools used for Little man’s diagnosis.

Autism spectrum

Image via Wikipedia

 

Autism Diagnostic Interview Revised (ADIR)

This is a diagnostic tool used on children aged over 2.

 ADIR is a structured 90 minute interview consisting of 93 items spit into three functional domains. The responses given are then coded in 8 areas.

 The test is to look for the early developmental signs of autism spectrum conditions including a child’s Speech and language, the way they communicate and interact, repetitive and stereotyped behaviours and intense interests. (This is another test performed on little man).

Autism Diagnostic Observation Schedule (ADOS) 

This is a diagnostic tool usually used from the ages of 2+ (commonly used on adults as well as children) professional play based observation done on an interactive format (child/clinician) 

 The test is used to assess the child’s social communication & interaction skills, imaginative play or creativity, stereotyped behaviours and restricted interest. It was the ADOS that finally lead to Little man’s formal diagnosis.

English: Subject: Quinn, an ~18 month old boy ...

Image via Wikipedia

 Childhood Autism Rating Scale (CARS) 

A diagnostic tool for children over 2 years.

 The test consists of 15 items rated on a 7 point scale. These items are made up from parental input/questionnaire clinician observations, other related reports and input (educational reports etc)  A wide spectrum of behaviours are assessed including those above and more. The test will establish three possible outcomes… not autistic, mildly/moderately autistic or severely autistic.

Gilliam Autism Rating Scale-Second Edition (GARS-2)

 A diagnostic tool usually used in those between the ages of 3-22 years of age. It consists of 3 sub-scales based on observation of frequency of behaviours such as, stereotype behaviours, interaction and communication, of occurrence and parental interview

Diagnostic Interview for Social and Communication Disorders (DISCO)

A diagnostic tool used for diagnosing children/people of all ages. This is a semi-structured interview schedule lasting some 3 hours with parents, other care givers, which is mainly used in assisting the diagnosis of autism.

The good, the bad, and the dam right ugly!

1 Oct

This post is brought to you today bearing Mixed news, developments, and gratefulness.

Let me start with the good news!

Many of my readers and loyal followers will be aware of my struggles in obtaining a statutory assessment of Little man’s special educational needs. Well, after a refusal, pending appeal tribunal, school resubmitting the assess one, the prospect of hours of mediation with the LEA on the 13th of this month and a whole lot of stress! The Special educational needs panel have made the decision to make a statutory assessment. With this the LEA also informed me that they well contact our preferred specialist school to ask for an emergency assessment placement.

I’m not under any illusion that it’s all rosie from here on! This is just the first step and given how hard it was to obtain it, nothing can shock me. The decision a lone has taken 7 months from that first request that was refused. It’s extremely frustrating how back on the 1st March when I first requested an assessment Little man had only uncounted One exclusion, and now it’s more like ten! A great deal of stress, tears and constant worry for what? It’s a disgrace that your child needs to be seen as totally failing before anybody looks up and takes notice. What ever happened to early intervention and every child matters? We have all these rights when it comes to our child, but who has regard for them? Do they not realise that by letting it get “This bad” is like allowing our children to become “emotionally unhinged” If this is the process to obtaining an assessment, I’m dreading the decision to statement or the content that statement may contain.

However for now I’m just pleased we are a step closer and things are at least moving in the right direction. Little mans emotional needs are my main concern as without emotional well-being there is little point of anything else. I just hope all his needs are taken into account when decisions are made in relation to emergency placements.

So.. here comes the big fat bad news!

With everything good that happens, something totally lousy often follows. Of course we are a prime example of this. Little man went back to school on the 28th September after a fixed period exclusion of two days. However he had only just about got his foot under his desk when…

If you haven’t guessed it already then Why not? 🙂 Yep Little man was excluded once more for a fixed period of five days. So that’s three exclusions in around 11 days (Oh and that’s counting the weekends) However this exclusion comes with a twist! IT MAY WELL BE HIS LAST! Permanent exclusion is on the cards and to be honest I’m not at all shocked nor surprised. After all Little man + current educational setting = affliction and scandal.

So it would seem that after all these exclusions, school know see what I see! IT’S NOT WORKING! You would think that after something has been done two-three times max, and it’s having no positive effect, it’s a done deal. I’m so furious that it took this level of action to come to the same conclusion I did back in March. I’m not saying he should get away with anything and everything, but their have been so many incidents that have been a direct result of anxiety. Of course there has also been times my son has been naughty (He is 10 years old) but I feel even then some less extreme forms of punishment could be given. Even an exclusion that was unavoidable can’t have a desired affect. How can it when his excluded so often?

If I was asked a year ago if I could see this happening one day in the future, I would have answered “Yes I could” Ok maybe not right now maybe not in a months time but sometime in the future. Now some would ask how? How could I have guessed this would happen, when a year ago Little man’s school stated they had NO CONCERNS? I quote “He is very well behaved at school” I heard this a thousand times, and often I questioned myself.. Was it me? Why was he only showing challenging behaviour indoors? It was quite simple really! Little man spent so much time at home and not at school it was near on impossible for them to say otherwise. Lets face facts. So much time was spent judging me as a lazy ass parent who just didn’t fancy taking her child to school. I don’t think so, life wasn’t a picnic and sleepless night, refusal to get out off bed, get dressed and go to school was an exhausting experience (Nearly as exhausting as this one) As soon as he got the “routine” and he started to see school as something that he needed to do, something that wasn’t an option, he recognises that he had to attend and did. With this the school recognises that yes actually he can be challenging and with this comes a new pattern! Exclusion, reintegration, exclusion, reintegration………..

I should know more then anyone that yes, Little man can be a “handful”. But as his mother I also know that he can be interesting, clever, funny, polite and caring.

On his return to school that day I had already noted in his contact book that he was anxious. What with missing his trip and a serious incident that happen at home, he was like a ticking time bomb. The reintegration meeting had only been a few minutes in when problems began. He refused to sign the new behaviour contract as a new sanction was added. This sanction was to spend time out of class and In the office with the head teacher. I feel he explained his reasons in a reasonable manner, minus two swear words. He stated that he didn’t like being in his office due to past incidents like.. Having to tuck school shirt in or miss play and confusing statements made by the head. Some statements made by the head have caused little man distress as the head hasn’t adjusted his language as advised by specialist teachers who have assessed little man. He still uses metaphors and other complex terms that little man just don’t get. Little man has often taken things he has said literally  and he can ponder what his said for days on end trying to work out what it was he actually meant.

With little mans refusal to sign his behaviour contract and his odd use of a swear word, it was becoming clear that the head teacher considered calling it a day. However before doing so he told little man he was going to in-force the contract regardless of him not signing! Well, little man pretty much lost it then. He was close to tears and ripped up the contract and all the copies that he could find. This was contract number three and back when he first signed that very first contract he was made to believe that by doing so he was in control and was making decisions for himself which gave him some control and responsibility . He now felt betrayed, like the school were somehow breaking a law of some short. From then on things got worse and sadly he swore at the head telling him he was a F***ing Irish idiot (Not great I know) Yes it wasn’t on and he had over stepped the line but by in forcing the miss play time sanction then and there was pretty crazy. It was like pouring petrol on the five. I stood in tears as I watched Little man flying through the corridors hitting himself and the wall. I knew then I should take him home! I knew then he would face yet another exclusion. So as I took yet another one of those phone calls that evening. The ones I’ve come to know all to well recently! I just hung up and cried. I didn’t just cry for little man, I cried for every child like him and every parent like me. (And yes there are many families in the same position)

Over 75 per cent of children who are excluded have special educational needs (SEN) and exclusion rates for children in the middle band of special educational needs are 17 times higher for children without SEN. 27 per cent of children with autism have been excluded from school. Government figures out today show that children with SEN are over 8 times more likely to be excluded than those without SEN. (Sonia Sodha)

Surly these statistics highlight the sheer state of the system. Yet what is being done to change these figures? Not much from where I’m standing.

So now we have a new set of problems. Yes, the LEA will assess and No I have no idea when and where. I will attend a meeting with the Head teacher on Monday, so Lets just wait and see! after all what choice do I have 😦

Lastly a thank you.

Message to all my readers, loyal followers, new friends and old.

I cannot thank you all another for your care & support. I didn’t know the world was made up of so many caring people. I thank you for your comments, messages and your time. I’ve made some fantastic new friends and I discovered so much along the way.

The facebook page has turned into a raving success with almost 3000 members and growing by the day. I am so thankful to have found a wonderful admin team who like me have a passion to raise awareness. They have helped create a great, supportive page and for this and their great advice to me and others, I’m truly grateful. Thank you ladies 🙂



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