Get The Answers You Require From The Talk about Autism Family Support Live Q&A Session

As a parent who has a child on the Autism spectrum I know how frustrating it can be looking for answers. Thats why I’m really excited to share some excellent news with you… Ambitious about Autism the national charity dedicated to improving opportunities for people with autism, who run an online community called ‘Talk about autism‘ have come up with the Family Support Season of live online Q&A.

The charity has come up with 4 discussion topics that parents with children on the autism spectrum voted upon late last year. The whole programme has been designed to offer both parents and carers professional advice from leading experts within the autism sector.

Each of the four sessions will take place live on the web over at the Talk about autism website. Finally parents will have the opportunity to get some of the answers they have been searching for whether its about challenging behaviour or socialising with peers the parent support season’s Q&A sessions will do its best to answer those questions.

The first session has already taken place back on the 16th January. The session covered the topic… ‘Getting the right support at school’ Nonetheless you can still read the entire transcript on the evenings topic over on their website. The session covered areas such as access to education, statements of sen, exclusion and more. The transcript is packed full of great advice what with the specialist advisers being Jill Davies, Manager of the Special Educational Needs (SEN) Helpline at Contact and Family, and Steve Broach of Doughty Street Chambers, who is an expert on the rights of ‘children in need’ and disabled adults. This was the first of four live sessions and a great success. Its my guess the remaining three will be just as valuable in the advise they offer.

The second live Q&A session is set to take place on the 30th January 2013 and the discussion topic is that of ‘Understanding & Managing Challenging Behaviour‘. The evenings professionals will be Dr Emma Douglas, a Senior Applied Behaviour Analysis (ABA) Consultant from TreeHouse School, and Richard Hastings, Professor of Psychology at Bangor University in Wales. So, if you are currently experiencing problems with challenging behaviour and are looking for advice this seems like a pretty good place to start.

As a parent to a young man with Aspergers Syndrome we’ve experienced our fair share of meltdowns and aggressive behaviours. Little man is 12 now and I often worry he doesn’t know his own strength when hitting out at other. We have had some particularly bad mornings before school when little man has thrown punches in my direction. His violence scared me! With a frightening temper I had to sought help but it didn’t come easy. I just wish there was something like the live Q&A session available back when I needed it. This topic will sure to be a life line for parents all over the world.

The remaining two sessions after that will commence on the 13 February 2013 & the 27 February 2013.

These sessions will be as follows…

Puberty, sex and relationships (13th February 2013)
Experts for the session: Lesley Kerr-Edwards, Director of Image in Action, and Professor Jahoda, Professor of Learning Disabilities at the University of Glasgow.

Supporting your child to socialise and make friends (27 February 2013).
Experts for this session: Jennifer Cook O’Toole, education specialist and author of The Asperkids Book of Social Rules – the Handbook of Not-So-Obvious Social Guidelines for Tweens and Teens with Asperger’s Syndrome, and Andrew Swartfigure, Senior Applied Behaviour Analysis (ABA) Consultant at TreeHouse School.

Well, I’m definitely marking the 13th February 2013 in my diary. This is a topic that I myself have a number of questions in need of answering (googling can only provide so much)! My 12 year old is fast approaching puberty and don’t I know it! Puberty and the issue of sex is a hard enough topic for any parent to face but for those of children on the autism spectrum, it is an area of constant worry and struggle.

All sessions are live and will last one hour. Each live Q&A will commence at 8pm and finish at 9pm on the dates given.

To receive a reminder about any of the live support sessions visit the website and sign up for a reminder by email.

So, there you have it! Four great topics all live and interactive. How about popping along, maybe get a specific question answered or just follow the thread to see what others have to say. Don’t forget, all sessions will appear as transcripts following the live event allowing those of you who can’t make it on night, the opportunity to have a read. Who knows maybe you’ll still find the answer to that question you need answering.

Would love it if readers could share this on there chosen social networks. By reaching out we give parents the opportunity to gain the support they desperately need.

To find out how Live Q&A sessions work click Here

Disclaimer… This is a sponsored post for the autism charity Ambitious about autism. All words are my own.

The stranger who got right on my wick

I like to write about the positive side to Asperger’s after all the first two years of this blogs content, was filled with nothing but rants, brought on by a mix of discrimination & my battles in obtaining appropriate education for Little man.

 However, I’m really sorry to do this to you all, but this is in-fact a “Rant” 

 Sometimes life isn’t all rosy and you need to unleash the not so good stuff… Today is one of those days!

 There are a few things troubling me that I need to get out my head and onto the blog, somehow just letting my fingers do the talking for me, helps me to adapt my mood and somehow go about getting on with things.  

 Now, the first is one that I’m convinced most will read and think, “Get Over It” and to be honest if you did, you would properly be right in thinking this, I should just “Get over it” I know this! However there are some days when something like this happens and it’s just the icing on the cake (so to speak)! 

 What am I rambling on about, I haven’t even told you what it is troubling me, yet here I am trying to justify my own thoughts! Well, basically I am hacked off by a person I’m pleased to say I have never had the privilege to meet, a complete and utter stranger who really shovelled a generous amount of judgemental bull in my direction! 

 So what! I deal with this shit daily, right? True! However I wasn’t in the most stable mood this day (Note this was a few days back) I was actually darting to a Halloween party in an attempt to save my panicking 11-year-old with a diagnosis of Aspergers, from a pending firework display. My iPhone pinged and alerted me that I had mail (email) this is when I discovered the comment below. 

I was reading that one difference between boys with aspergers and girls with aspergers is that girls mimic people around them and end up blending in with neurotypical people. I believe aspergers has a genetic base. I think you and your daughter also have aspergers. It also sounds like you favor your daughter over your son, and he notices and resents it. The most annoying thing with mothers with aspergers is that they think the way their children are acting is somehow done on purpose just to frustrate, like they thing they are the center of the universe, them when in fact children with aspergers are just trying to do what’s best for them.

  Yes, I’ve had crap like this before but this however really rubbed me up the wrong way. Now here’s what drives me that bit more crazy… You get dealt this type of ignorance, become somewhat fired up, yet all you can do is leave an angry “Mind your own business” reply, containing a fair portion of swear words (which I just about reframe from adding) as well as a load of typos that occur as a result of your mad frantic typing! Then you wait… and wait… In reality I don’t want to get into some full on bitching match with this numb nuts above, yet somewhere muddled within the haze of my angry mind, I want to see his response and I want it now! Yet it never comes, ever!

 I’m my head I was screaming you cheeky patronising *#¡# how dare you read just one, just one post and think you have the right to judge me as a parent! 

 What’s more, what right do you think you have to diagnosis not only myself but also my daughter as having “Aspergers” Goodness me, you have never even met either of us. 

 Oh… and you can cut the other crap about my son acting out his aggressiveness in the direction of his sister because he feels she is my favourite, thankfully you really don’t know me.

 Yes, this asshole thinks he knows it all, when actually he doesn’t even know the slightest. I don’t care if the individual has a diagnosis himself or is even a parent, he still has no sodding clue about me and my family!

 Here’s the thing people! I spend hours punishing myself mentally, due to the guilt I feel every single day! Guilt towards my daughter! Why? Because she deserves so much more attention then I have been able to offer. I spent days and nights, writing to schools, filing in complaint forms, collecting evidence for a discrimination case and more besides.

Then there were and still is the trips to CAMHS (child adolescents mental health service) the nights he sleeps in my bed though his far to old, yet if my daughter asks I have to state she can’t and this is purely because Little man would never sleep and likely complain with every movement she made. So, why not refuse to let my son? Consistency is sometimes hard to withstand when its 4am and his been sat outside your bedroom door since midnight in tears! 

 So, when I sit there thinking about this stranger who I have never met, sat at his computer typing this judgemental bull, when this mother has not had a wink of sleep in three days I tend to become a little bit touchy! 

 I would like to state quite loudly that although I love my son with Asperger’s and try to activity embrace the diagnosis, No, myself nor my daughter have Asperger’s.

How this conclusion was drawn from that one post almost makes me want to roll on the floor laughing but at the same time really rattled my cage!

 Now, here comes trouble number 2! I’m worried that once more, yet on a worse scale, my son’s aggressive and growing violent behaviour is going to draw to a serious end but only when his seriously hurt someone (who knows, maybe this won’t even draw an end to it)! 

 At 11 years old his tall for his age, and is no longer the skinny little boy he once was. His gaining strength and today he punched and kicked me so hard I feel to the ground. This was only after he had finished with his sister and I’d tried to intervene. 

 I hear the same thing from high-end professionals who claim that removing the trigger will solve such issues, but what if the trigger is his sister, seriously she only has to like something he likes for him to feel it’s justified to give her a dig. Planned ignoring wont help either! You can’t ignore one of your own children who you love dearly beating the hell out another, it’s just not  worth contemplating. 

Related articles

• Brain Science of Aspergers and Autism Pt. 2: Anger and emotion (wizzkids.wordpress.com)
• Just because I love him (aspergersinfo.wordpress.com)
• Aspergirls: A Subculture Within a Subculture (psychologytoday.com)
• Siblings and Autism: How Are Kids Affected by Special Needs Brothers and Sisters? (blogher.com)
• Brain Science of Aspergers and Autism Pt. 1: Sensory Overload (wizzkids.wordpress.com)

Little man quite possibly the next Jamie Oliver?

What an interesting year this is turning out to be! Not only am I now an award winner for doing something I adore, I also have a son attending a school that he doesn’t shudder at the thought of going each morning but one that has also converted him into something of a little ‘Jamie Oliver’.

Little man is really getting to grips and enjoying the cooking lessons his being given in food tech.

So far, the Little Man has brought home, yummy cookies, fairy cakes, pizza and last week it was Rock cakes.

I now sit eagerly awaiting my son’s return from school in the hope he brings with him some yummy threats… “So not good for the waistline let me tell yer!”

The Rock cakes he made, free from all traces of dried fruit (his not a lover of the raisin you know) were amazingly good and seriously lead me to suspect that his taking after his father when it comes to being in the kitchen.

I love that his expressing his interest in a more positive light while expanding on the things his good at why discovering new interests and abilities along the way. This is something we all deserve to experience through both our child and adulthood.

I always knew Little man was keen to get his little size threes in the kitchen door, lets not forget I found him trying to cook bacon in the early hours of the morning as a four-year old tot! I even found him last week heating the oven in preparation for his tea (anyone would thing I didn’t feed him).

I like to encourage all my children to pursue their interest! So… when the little guy offered to make us a pizza I thought,

“Why not, what’s the worse that can happen?”

Spending a fortune at our local supermarket that’s what can & certainly did happened!

I swear it was triple the price of your standard boxed pizza!

Why?

This would be his taste for the finer things in life!

Chinese chicken, (two types, not one) organic tomatoes, Italian Milano salami and a generous amount of parmesan cheese was what he requested for his masterpiece in waiting.

Once home with a bag of ingredients and a somewhat lighter purse, there was no stopping him getting started. The results, Yes… They were pleasant but the mess, well I guess you can’t be good at everything, especially tidying up after yourself.

Cooking isn’t the only skill the little man has acquired, his learnt other valuable lessons since attending his new school, some extremely important ones too!

In the past, little man would hit out in school and do so on a regular basis. He didn’t think about the other children stood in his way when he trashed a classroom in an angry rage. He often reacted to any upset by either absconding or hitting out at everyone, no matter how big or small the opponent. Little Man would often find himself excluded from school and any associated activities, he was a child with little if not any confidence.

Now, there have been one or two incidents in the school that Once upon a time, would have caused Little man to display the same challenges as those mentioned above. For instance, one child was angry and trashed the class, accidentally destroying little mans work in the process. Little man was terribly upset by the incident, but with lots of support and encouragement he reframed from engaging in a way that would have only see him land himself in trouble.

Little Man often finds himself in the wrong place at the wrong time. This was the case on Monday when his limits were truly put to the test when he was hit on the nose resulting in some bleeding. No, I don’t blame the child he was merely doing what my own child has done all to many times when upset, angry or stressed. Little man set chase and was ready to do something about it but again he was discouraged and instead allowed to come to the office and give me a call to talk through how he was feeling.

You see, I don’t want him to be a target for bullies, yet, I don’t believe these kids are! These are children like little man who have difficulty with self regulating their emotions in a controlled and socially excepted manner. I think to some extent Little man understood this too. As when we talked about the incident this evening, he explained how he wasn’t in an argument with the child he was just too close when the child got angry. What was actually quite surprising, was how he seemed to understand the situation so well! Later on that evening (much later) I was sat on my bed at gone 3 am when it finally hit me, “Why wouldn’t he understand? After all, he of all people can relate to that feeling of un-containable explosiveness that I’m sure his class peer had felt at that very moment Little man got hurt.

On the upside, I am overwhelmed by the changes being made and just how quickly such changes have progressed. I was speechless when the teacher phone me and told me what happen. As soon as I heard the words, “We thought you should know” & “Your child was involved in an incident” I felt that all to familiar churning in the pit of my stomach, the type I felt so many times before but thankfully haven’t for sometime!

I instantly thought that my child had hurt someone, and although I waited for them words expecting them to come, they never did!

Of course I did feel a certain amount of upset, purely for the fact my child had been hurt but almost instantly I felt at ease as I was reassured he was fine by both himself and the teacher who called me.

Now, yes… of course I was a proud mother when discovering my child was now learning methods to control his anger and when putting such methods into practice, he was succeeding. Little Man, was also a very happy Little man on discovery my plans to get him his much sought after Lego that he has overly requested I get him since he spotted it at our local supermarket a month or so ago.

Sat at home I felt somewhat troubled like something nasty was waiting to come along and wreak it all. It’s hard not to think in this way when it’s all you know and everything your used to! especially.

I need to discover a way to get that same reaction at home. His sister only has to look at him the wrong way and his throwing punches in hers or even my direction. This isn’t delightful for my daughter of course, and every-time he hurts her in some form her reaction is more intense then the last. I’m left feeling like I’ve failed them both, especially when my daughter loses her temper to such an extent she shouts things she is later left to sit and regret, beating herself up about it. I also release that something needs to be done more now, than ever before. Little man has said “I want to control my anger” through a stream of tears after many blow ups at home. I try to be consistent in dishing out a punishment (maybe a cut in pocket-money, or the removal of his computer) it just doesn’t work

Well, if any of you lot have some advice, I’m pretty open to suggestions, so please go ahead and leave a comment.

Still, regardless of anything else I’ve decided that this post should and will end on the high, it started on!

Other things that happened last week!

Here’s a positive, Last Tuesday I was again featured in the local paper (The South London Press) regarding the award I won (Mad blog awards most inspiring) I was also in the Newshopper on the Thursday of last week. Both articles were pretty good and apart from my horrid picture in the South London press I felt honoured to have gained the interest of both papers who also wrote about me a good few months before in relation to being a finalist.

Another bonus that added to last weeks positives, was the arrival of an email that brought with it great news on a project I’m hoping to pull together with the help of some great parents and their children. Although I’m more than a little excited about the whole thing, its best I don’t officially announce this exciting venture till a little more organisation and planing has commenced.

Here’s what I will state (well, more like request)

I’m looking for parents that have children on the autism spectrum either boys or girls between the ages of 2-17 who live in or around London who will be able to commit to a number of trips over to the South London area.

We are in the planing stages, but the whole thing is on track and set to be a hit.

Note: the project is likely to generate a little press interest so you must be happy with this aspect of the programme.

Lastly we are also happy for the child’s siblings to be put forward and therefore possibly become involved in the project.

Please if you have a daughter on the spectrum then please don’t hesitate to contact us so that you can be sent some further info (It’s all boys who have been put forward at present).

Full press release will be available on the blog for download in next few days.

So, there you have it! Everything is steadily coming together in our little house of madness. We hope your having an awesome week two.

A love hate relationship

So, today I’ve been inspired to write this post by my beautiful daughter.

You see, my little princess is feeling a little left out! I guess I haven’t really treated her like the little princess that she is just lately.

I hold my hands up, life has been far to busy and she hasn’t received quite as much attention as I would have liked to have given her. I’m not stating I’ve neglected here, “As if my little diva would let me,” I’m merely stating that we need some one-on-one time without big brother! There has been less chick flicks & girlie pampering but far to many tears.

I look at my daughter with such pride, she is this truly amazing little girl who never fails to melt my heart. Like most siblings of Children on the autism spectrum, she seems quite mature for her eight years.

Over these past few months, which I must add have been pretty emotional for all, I’ve noticed my little girl has mimicked one or two of little man’s behaviours. It doesn’t take a genius to know why she has done this, after all little man gets quite a bit of attention when displaying such behaviours. Alice-Sara (My daughter) has claimed that she can no longer use certain cutlery when eating her dinner as it makes her feel fuzzy (tactile sensitivity). She has stated that it’s to noisy in school and has gone as far as throwing a tantrum over a miner mishap that wouldn’t normally bother her. This isn’t all! More recently see seems somewhat resentful towards her brother. It’s understandable given a good degree of the time he isn’t very nice to her and is extremely hard to live with, but it’s also to do with how much time I need to spend attending to Little mans needs, both social and educational. Last week I almost died of shock when my daughter, who enjoys school refused to attend. She throw me with her claims that she hated it and certain teachers didn’t understand her, yes, something her brother has stated through sobs of tears! She insisted that in-order for her to attend I would need to write some letters and sort things out in terms of her education! She also informed me that maybe it would be better to home educate her for a a bit while things settled down, Her worlds not mine! “Guys this little girl has a stack of friends and is popular with both the pupils and the teachers. Her reports always come back glowing with nothing but prise written all over them”. I knew what this was really about! With Little man’s pending Sen tribunal due to be heard in June, I have been writing statements, emails and filling out a ton of paperwork, mainly parental information needed to form part of his independent SALT and EP assessments. I have also been doing quite a bit of casework for my role as a TSS volunteer. Alice-Sara confirmed this to be the issue when I insisted we talk about it on the way to school when she so angrily stated why storming towards the front door, “Oh, You would have done it for him.” Yes, ‘him’ meaning Little man!

Alice-Sara loves her brother, however things are not always easy for her. All brothers & sisters normally quarrel, I’m not denying that, but come to our house, I promise you its beyond ‘Normal’!

Now, it’s not always the little dude who is the one to kick things off, my daughter has become accustomed to setting him off and she’s learnt how and what buttons to press in-order to get her desired reaction. However his rigid thinking and tendency to be inflexible and controlling has either brought her to breaking point or reduced her to tears. Lately she can’t seem to breathe without it bothering him. Just a few days back little man treated the family to a night on pain-killers. My daughter needed Calpol (children’s medicine) for her headache and although I had just taken a couple of good old paracetamol for my own chronic headache, I could have done with something a tad stronger like a few handfuls of tranquillisers to knock me out for the rest of the week!

Alice-Sara decided that having tried a ‘Fish Finger’ for the first time they were actually quite yummy. When dished up and the kids sat down for dinner, little man’s eyes wondered across the table in the direction of her plate. “OH NO…”

Little man: “Mum, you’ve given Alice the wrong dinner!”

Before I could answer…

“No, she hasn’t. I like fish fingers now.” Announced Alice-Sara.

Well, what happened next wasn’t anything unexpected as it happens on a regular basis! A full-on blow up was had that consisted of him claiming that his sister shouldn’t be allowed to like fish fingers as he likes them! “She’s copying me,” and “You’re horrible mum! They were my fish-fingers!” Those statements and a load more, accompanied together with kicking doors and throwing whatever was in his reach went on for a good proportion of the night. A real head banging event!

Last spring when things were really difficult at school for Little man which resulted in some challenges at home, I began to worry for both my Little man and my daughter. His aggressive behaviour was at a point that was deeply concerning. We went on a day out accompanied by my friend who ended up having quite an eventful time and one I’m sure she wont forget for some time! It was during this day out that I decided we as a family needed to seek professional help & support! Alice-Sara was happily flying a kite on the heath following the ‘Bike & Kite’ festival we had just attended. Out of nowhere came little man who had decided it was time she stopped! He run over giving her a massive shove that saw her fall to the ground. No tears followed, she didn’t even complain, just got up bushed herself off and returned to the joy of flying her kite. In that exact moment I realised that I had just witnessed something that scared the ‘crap out of me!’ Was this the ‘Norm’ for her? Did she consider it an acceptable thing for her big brother to have done? Would this little girl ‘my little girl’ grow up thinking it was Ok to be pushed around? I don’t want my daughter to ever allow herself to be treated like this, not by anybody including that off her big brother! It was lucky that at this time I was in contact with a lady who works for the autism outreach service for our area and how lucky was I when she agreed to visit me at home and have a chat with my little princess. I also gained some good ideas on strategies that I could implement that would hopefully stop little man becoming so physically aggressive towards his sister. It took some effort but results were seen, his hitting faded out and Alice-Sara would no longer turn a blind eye to his behaviour.

Sadly these past few weeks something has changed in the little man and myself and daughter have received some unwelcome attacks as a result. He even attacked his sister on a packed train when returning from the West End because she, ‘Disrespected Transport for London’ when placing her tired little feet on the seat she was sat on.

How can I make it stop? Consistency is our only hope. Strategies that we used last year have been tried but sadly failed, however this mum is on a mission and won’t give up on finding another strategy that works!

I’m guessing a number of parents of children on the autism spectrum will agree… consistency is a ‘must’ for all children but isn’t the easiest thing to apply when dealing with the child with Aspergers and they’re challenging behaviour.

To bring this post to a close I’ve finished with something positive. After all this talk of violence I think I need to! So, besides sharing some contact details for sibling support groups that some off you may find helpful, I’ve also included this beautiful picture that I captured yesterday on the train when on our way out for the evening to see a show in the West End to celebrate the Royal Wedding. Little man has his arm around his sister who happily excepted a hug as opposed to a slap or a punch! No-one requested he gave her a hug, it’s something that you just don’t see him do! I don’t know who was more surprised me or my daughter!

The Charity Barnardo’s run a number support groups for siblings of disabled children around the country. Some groups are mixed for both the Sibling and their brother/sister with a disability, whereas others are dedicated to the sibling alone. (028) 90672366 is the contact details for the London regional office. If anyone requires the number for their area drop me a comment or contact the above number as I’m sure they will help.

Contact a Family is another organisation who cater for siblings of children with disabilities. Further info can be obtained by calling… 0808 808 3555

Mencap are happy to put people in-touch with their local sibling support group. The number for England is: 0207 4540454

Kids are an organisation which runs play, education and social initiatives for disabled children and it is suggested that siblings may also benefit from their clubs, outings and residential weekends, and can be contacted on: 020 7359 7635 email: enquiries@kids.org.uk