Tag Archives: support groups

A love hate relationship

1 May

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

An Inspirational Journey.

28 Apr

With so much to say I really don’t know where to start.

So last week I had an idea! Being me I just had to make this idea a reality. Of course this idea was autism related Yes I’m starting to think that maybe Autism is my “Special Interest” How dare I say my son is obsessive. Well what’s this idea, project or even mission if you like? Well I went in search of beautiful images. These beautiful images would be sorted, arranged and placed together to create a collage. Autistic adults & Parents of autistic children from all over the world have sent me their stunning images and gave me permission to create a collage that would need No words for it would tell its own story and by doing so help us raise awareness for Autism Spectrum disorders.

As I sat at my computer working on this very project I came over a little tearful. I don’t think I was sad I just think I was a tad emotional. We  started our journey a few years previous. I sat at the very same computer but this time the mission was somewhat different. I had to educate myself on Autistic spectrum disorders. When It was first suggested that this could be a possible diagnosis for little man I felt lost. Yes I had heard about autism as Little man had a cousin on the spectrum. But I knew little about the condition. Alfie his cousin was at the lower end of the spectrum and Aspergers was considered a more appropriate criteria for a diagnosis for little man. However this took a huge amount of time. It was both tiring and stressful. My heart goes out to every parent going through this process, Stay strong and don’t give up.

Sat at the computer I continue my trip down memory lane. It’s a long lane full of emotional challenges and certain disadvantages that we had to overcome! But there are also many positive event’s that balance it all out. I have learnt to embrace little mans Aspergers instead of fearing it. I don’t want to be a parent who doesn’t understand their child. Ok  there are times it’s impossible to know whats going through his head but I’m sure that’s just boys in general:) But I get knots In my tummy when I think back to all them times he had unwelcome meltdowns and I was at a complete lose to why it was happening and what to do about it. I wanted to scream! And keep screaming. I dare to think how he was feeling. I just wanted to eliminate the triggers for the unwanted and Challenging behaviour, But to do this wouldn’t I need to know what those triggers were? I didn’t have a clue and needed an even bigger clue to know where to start looking. Goggle had become almost a second mum to me. I relied on it so much. Google pointed me in the right direction just as my mother has done many times. I learnt so much and with this I noticed improvements in all areas of Little mans life.  It was evident that a number of problems were caused by his difficulties with his Sensory processing. I can not begin to emphasize how much time and understanding  you will need when dealing with these sensitive problems. It may take time but what else have you got? I had to analyze a number of different  situations for what felt like forever in-order to work out what triggered certain outburst and social awkwardness. We made a reasonably long list of possibles hence the reason I was shocked the school reported no worries or concerns of their own. I remember a certain child Psychologist telling me “His challenging behaviour would  likely become more apparent at school as he grew” I have to say he was right it’s now became very apparent within school! At least I have more confidence  in taking hold of a problem situation as 9 times out of ten I can work out why it’s happening ( See what research ca do for yer ) Avoidance was the key although depending on what the problem was avoidance was not always the best nor even possible action. School was a big No, No But avoiding it was only going to send the AWO knocking at my door gunning me down like a harden criminal. I also assumed that Cognitive abilities were well within the average range. So his learning was fairly good given that he missed a considerable amount of school time. Not only was little man a night owl he also liked to be a naked one. He hated clothing and as soon as he returns home from school off come the clothes and into the toilet he goes. He did this same routine every single weekday and still does ( At least now the clothes go back on afterwards). So I had come to the conclusion that he hated to wear any clothing when taking a poop ( Including socks ) He preferred to be naked in general. He didn’t like wet food touching dry food ( exceptions being daddies pasta and gravy on a roast dinner everything else a no,no ) He hates scrapping  and scratching noises hence the reason for all them meltdowns and boisterous behaviour  every time the task of washing up came around or scraping the fork across your plate in-order to gain the last mouthful off baked beans. That noise sent him loopy yet I just stood looking up asking God why, why, why. He said it makes him feel fuzzy Little man has always been very verbal so It wasn’t that he could not talk to us to let us know he was having difficulty dealing with things! He just expected us to know. I guess at that young age they always do.  But being a child on the spectrum this little blunder may carry on for many years. Sadly for some it’s forever. Little man has come so far and mostly always  informs us if he is stressing because his having a problem with something. If your child has never undergone a problem with sensory sensitivities then it will be pretty hard for you to really relate. Those that have I’m guessing are furiously nodding their heads about know.

Another trigger that came to light was that Little man had certain phobias that made him understandably very anxious. He loves doors but was scared to use public or school toilets for fear the doors may shut and lock him in. He also had this fear in other situations that entailed being behind doors. elevators posed problems as did shops. Yes have you ever been in a shop and it’s due to close? They often lock the door so no other customers can enter. God I remember and will never forget that first and only time that very thing happened. He was aggressive swearing and screaming. He was seen as a spoilt brat. Then we had the emotional overload kick in. He laid on the shop floor holding my feet and asking not to die. He was just 3 at the time. And no he did not grow out of it we have just avoided it ever happening again. He also fears others if they have a certain physical  disability . He will face the wall  and cry. He don’t mean to be nasty he is truly afraid.  Still the on looking eyes don’t make you feel much better.

I’m very proud how far we have come. Little man is having a range of problems within school and lately he has brought some of these behaviors  back home. But we are dealing with them best we can. However exclusions are having a huge negative impacted  on the family and I really want to find a way for this punishment to be avoided. In my opinion it’s only making his routine suffer and his sleep pattern disappear. Apart from the school issues I think we have a much better situation going on. Home life is more settled and we both have a better understanding of one another. We are working on removing his use of swearing if anything his public use at least for now and his aggression towards his poor little sister who is innocent 97% off the time. Hand on heart I think without many of my new friends within this massive autism community I would not be where I am at today. At first it was just us and I really didn’t expect to much in the way of personal support and advice, especially from the internet but how wrong I was. Blogging opened a door for me to explore so many different places that had connections with ASD. Twitter and facebook must be run by aspies 🙂 I wanted to exchange advice and tips with a handful of parents (  the more the better!) Wow I have made contacts reaching well over the thousands. Many are with other parents all going through the same thing all with a story of their own. Behind every blog, profile & tweet there is a connection with autism and that connection bonds us all together in a very strong and uplifting way that I guess only us parents of special needs children would understand. I have Created a Facebook page and group that is open to parents, siblings, and those on the spectrum regardless of age,  gender or race. How quick  the list of members has grown is amazing. And to read comments confirming how beneficial social groups can be to those with autism and their families is a very positive thing that makes me smile. I have been truly inspired by many to go that extra mile when raising awareness for autism. I’m so very lucky to have interviewed people like John Kirton from the documentary Autism x6. John you always offer great advice thank you. Also to be raising awareness along  side advocates such as Anna Kennedy ( advocate and author ) who I’m so lucky to have on my Facebook  friends list 🙂 And other inspirational people I am lucky to have made contact with who are always happy to give advice and I’m sure those in the world of autism would know these great people or a least of  heard of them. Donna Williams, Sally Hugget, ,Polly Tommey ( who is busy with her autism campaign ) are just a few. There are  many more who range from parents, professionals, advocates, educators, Authors, bloggers, autistic individuals and so on.  Wow I really do have many places and people to turn to. Thats just a great reason to smile and cry a happy tear. From Just us to all of us. How liberating. Every time I receive a message or a comment from a parent of a newly diagnosed child I will direct them to this very post to assure them they are not alone. The collage, Group and Facebook page are all a chance for me to give something back.

So now when you look at the images within the collage please see more than just faces! These are the faces of autism. These are the beautiful faces of autism.

The collage filled with beautiful faces of Autism Is now available for viewing on this blog  under the page titled Awareness Collage.


Aspergers sites.

10 Dec

When i first heard that my son may have Aspergers i wasn’t sure where to turn for help.

If your new to my world then I’m guessing you are in search of some answers and like myself have turned to the Internet find them. I hope that this site helps you along but I’m a mother not an expert. And as this blog is fairly new i fault i would share some off the great AD sites that have helped me  over the past few years.

www.aspergerfoundation.org.uk

www.AspergersSociety.org

www.oaasis.co.uk

www.assupportgrouponline.co.uk

www.aspergers.com

www.aspect.org

 

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