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.

4 Responses to “An Inspirational Journey.”

  1. Darius Soon September 23, 2011 at 4:16 am #

    Claire, I can see the love you have for your child in the collage…

    Thanks very much for sharing!

  2. Katie June 9, 2011 at 10:47 pm #

    How comes i’ve never read this post? I thought I had read them all! What a fantastic post I somehow missed, I like you feel humbled to have met so many supportive people via the Internet yourself very much included. Claire your right up there in my list of most inspiring women.

  3. Shohna April 28, 2010 at 10:37 pm #

    The collages are brilliant Claire. I can’t wait to show them to my gang in the morning. My girl especially will love to see a pic of herself in them and it’ll be good for them to see photos of other children, just like themselves🙂
    BTW yes I did indeed found myself nodding while reading about a good number of your little mans sensory traits (e.g. I still have to hold the toilet door for my youngest man when we are out cos he can’t have it shut or locked. In fact I still have to take him into the ladies public loo’s when we are out cos he can’t go into the “mens” on his own, and that gets lots of looks and comments!….at least it’s not me walking into the “mens”! lol….but we still have meltdowns over the noises of hand dryers). It’s only in the last couple of years he keeps his clothes on and is beginning to eat food that is another colour than yellow, beige or brown, and the list goes on – it makes life interesting I guess🙂
    I really feel for your little man and you regarding the exclusions. Total flaming ignorance on the schools part. It’s bad enough having to deal with ignorance from people in general, but to then have to deal with it from so called professionals?!! :-/
    I’m enjoying reading your insights so thank you for your time and efforts

  4. amanda neal April 28, 2010 at 5:20 am #

    claire – i love the collage and im so proud that dylan and i are part of it. youre an inspirationand im so glad i found your page via fb. thank you very much.x

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