Fifty shades of Autism – Part Two

Fifty shades of Autism – Part Two

Following on from my previous post, this series of blog posts is to show that Autism comes in many, colours, shapes and sizes. No two people affected by Autism are the same. I have collected info from Mums and relatives of people affected by Autism so you can see the difference.

Dani, Mum of Jacob who is 2:

Jacob is two. I always thought when I had kids that christmas and birthdays would become magical times and be real special occasions but in the case of Jacob that just isn’t true, to him a birthday or christmas is like torture. He cried and had a melt down as we tried to get him to open presents on christmas day because even though he loves Thomas and most of his presents were Thomas related it was just too much for him so i unwrapped all his presents while his daddy calmed him down. No easy feat. Jacob used to make a lot of noise but nothing that could ever be classed as a word so he had speech therapy and he is slowly getting there. He now says mummy and tato which we find quite funny because its only after going in the fridge and getting a potato out and giving it a kiss and rubbing it on his face to see how it feels like he does with most stuff that he announced the word tato for the first time. Thats just the kind of boy Jake is though, amazing me and making me smile every day. Its not always easy and the fact he doesnt trust many people, has melt downs, doesn’t stay still and doesn’t sleep make it hard but he’s bloody worth it.

Natalie, Mum to Joshie age 4:

Our son is very much emerced in his own world, he is very good at navigating round his ipad and even round the restrictions i put on lol, he loves thomas the tank engine and curious george (they are kindrid spirts and our sons nickname is monkey) he has an eversion to wearing shorts (unless its for swimming) and he wont wear buttons, hoods or jeans (unless they have a stretchy fabric waist band) when we are out he often suffers with sensory overload we have managed to ease this by him having a enclosed pushchair (his safe space) and a snuggle blanket and a cuddly toy he only has when were out that he will bite and snuggle altough this isnt 100% effective it does help.

Chantell, Mum to Lucky who is 3:

Check out her blog at:http://wecalledhimlucky.com

Our Lucky is 3 years old. Teletubbies, Toy Story and Winnie the Pooh is the only way we reach him in therapy. He loves his siblings and loves to be squeezed and kissed by the family, but cringes at the thought of anybody else in his space. Lucky don’t wear coats, socks, shoes or anything weighing him down.. Even in the middle of winter. He loves the outdoors as long as there is nobody else around. Lucky ONLY eats bananas, brown bread (with NO seeds) with peanut butter and pesto pasta (all gluten free). We are still finding our feet, so at the moment we don’t really get out much… Unless we know nobody is at the park! Any outing is TOO much for Lucky.. Even the park and nature reserve outside our house. Thank goodness for online grocery shopping!!!

Robyn, Mum to Elliot who is 3:

Elliot is a very unique 3 and a half year old. He has lots of learning delays but can walk talk and do most stuff independently. He lacks social skills and doesn’t like to interact with other children unless they are babies. He has anxiety issues and hates loud noises. He has a major obsession with Disney Cars and Planes. He likes to be clean and gets very upset if he is dirty. He has some speech delays but Therapy is helping. He loves to draw and is extremely good at it. He has toilet issues and a fear of pooping and will hide to go and refuses to be changed when he has gone until it is too uncomfortable. He seeks comfort in organised things and has to have things a set way. He has a memory greater then any child I know. He loves cars and can tell you if he sees one like one he has been in. He will happily live on a diet of pizza, cereal and milk and getting him to eat anything different can be a challenge. Elliot is very hyper active and doesn’t like to sit still for too long and has a very low attention span unless drawing or watching Cars. He wakes frequently in the night screaming and can take up to an hour to settle back to sleep. He hates change and requires a good stable routine. He is also comforted by certain noises he makes.

Trish, Mum to Dinky age 7:

Trish Blogs at https://dinkyandme.wordpress.com

Dinky has PDA, which is a form of autism, except not many professionals understand it.
She struggles with demands made on her as they set off major anxiety. She also has major sensory integration difficulties which mean that she doesn’t like loud noises, and sensory seeks by spinning, flapping, rocking, jumping and sniffing things.
Her latest obsessions are Power rangers, Disney infinity (which she watches YouTube vids of and can now programme the little toys and mini characters to change colours), lego, and marvel heroes.

I’ve had some great feedback from these posts so far and am still looking for more people to get involved. If you would like to write a short paragraph or know someone who would please email me at luciecreates@live.co.uk.

superman_autism_by_sircle-d5zm8k8

I’m so happy I could cry!

I’m so happy I could cry!

I have won!!! I’ve won my appeal! Xavier finally has a place at a Special Needs School!! I can’t believe I have actually done this! YES!!

A few things still to be finalised then we will be sorting a start date! It feels really quite surreal after all the fighting and upset and sleepless nights and worrying and form filling and letter writing. I was never going to give up but it really is absurd how we have to fight so hard for what our children need.

I have decided to not tell Xavier until a start date has been arranged. The change is going to cause huge upset to him which I am not looking forward to but I know this is where he needs to be. He will remain there until he is 19 years old. They have everything he needs and have assured me that they can meet his needs emotionally as well as educationally. They have Physiotherapy and Occupational Therapy onsite and a warm water hydro pool. I know once settled he will love it there. They have a cookery room and a science lab which are 2 things he will be very excited about!

There will be some very tough, upsetting and trying times in the next few weeks or so but knowing my son will FINALLY be in the education setting he needs, and will thrive and will make friends with children who are similar to him and hopefully have the support behind him to get the amazing work out of him that everyone knows he is capable of!

This little man is such a joy. He is so clever and funny and loving and I wouldn’t change him for the world. I am so proud of him and very honoured to call him my son.

Champers anyone??

fizz

Fifty Shades of Autism – Part One

Fifty Shades of Autism – Part One

If you’ve met one person with Autism…. you’ve met ONE person with Autism. No two people with Autism are the same. They vary hugely in lots of ways. Some have a huge vocabulary… other completely non-verbal. Literally each one is unique.

Here I want to highlight lots of variations of Autism to prove it comes in lots of shades…. not just one.

I am enlisting the help of many people who have children/loved ones on the Spectrum.

I will start with my very own Autism Warrior!

Xavier is 9 years old. He LOVES to read books and is obsessed with Dr Who, Minecraft and YouTube. He loves all things Science and loves cuddles with Mum. Xavier loves Supernoodles, porridge and beans on toast.  He dislikes most meats especially roast meats but will eat sausages and mince. Textures are a big thing for him. He is getting better with it but he really dislikes having his hair cut… this is down to sensory issues. He also dislikes loud noises and busy places.

Tina, Mother of Sam who is 3 yrs old. She blogs at www.mothergeek.co.uk

Sam is obsessed with Mickey Mouse Clubhouse, shapes and colours. He can’t handle wet food. He will gag if anything wet touches his lips. (Yogurt, boiled veg, sauces, pasta, mash etc are all on his no list). He will eat orange, brown and black foods only. (Carrots, sweet potatoes, root veggies roasted to within an inch of their lives)…! Toast has to be almost black and not loads of butter. He will eat satsumas as long as the pieces aren’t popped before he touches them. He will eat red Grapes on occasion and loves raisins. His bedtime routine is solid, and as long as he isn’t disturbed in the night, he will sleep for 11-12 hours. If he is awoken during the night, that is when our day begins. (Usually 2am thanks to our neighbours’ barking dog). He can’t handle loud, high pitched noises (screaming) but loves loud music.

Helen, Mum of David who is 2 years old:

David is my son & he’s 2 years 7 months old. He was diagnosed at 2 years 4 months. He loves the alphabet, numbers and shapes, especially YouTube videos of animals and cartoons singing them. He loves cars and the Disney movie Cars, and the movie Monsters Inc. he hates his head being touched and having anything creative such as painting, drawing and making things. He hates it when anyone talks to him whilst looking at his face. He laughs a lot and loves to run from room to room, he still breastfeeds and loves booby cuddles.

Bernadette, Mum to Callum who is 11:

Callum is dislikes lots of food too breakfast is cereal occasionally toast afterwards Aslong as the butter as melted before he sees it is packed lunch for school everyday is the same bread nothing on it at all a kitkat and cheese and onion walkers crisp ( he will only eat walkers or sour cream Pringles) and he doesn’t eats on his own at school as he can’t cope with the smell and tea either sausage burger or chicken nuggets and will eat chips but only if they are from the takeaway and all of this has to pass the look feel smell test 1st , callum gets angry if you look at him his birthday last month was heartbreaking listening to him screaming he didn’t want to go school as people would be talking about him and his birthday and the only time in his 11 years he’s ever said about having a friend is on Xbox live which sadly we had to ban him from using.

Emma, Mother of Abi who is 9 years old:

At 9 years old our daughter has some varied obsessions from minecraft to Peppa Pig and Strictly Come Dancing. She can name celebrities who danced 2 years ago during a certain episode of Strictly, on hearing the music on the radio. Eating is a major sensory issue for her, consisting mainly of birds eye fish fingers, potato waffles and salt and vinegar crisps (walkers only). She won’t eat anything mixed, textured or ‘smelly’. She detests strawberries and the mere smell can make her heave. Abi hates having her hair brushed, washed or touched. She does however love to be squeezed, hard in a bear hug or rolled in a blanket on the trampoline! Abi hates busy, loud places, anywhere with lots of people and can’t bare babies crying. She doesn’t like summer as that’s when bees and wasps come out, she doesn’t like it when it rains and she’s terrified of falling over when it’s snowy. Abi likes smooth things, eating raw cake mixture, and playing with animals.

I hope this series of posts gives you a little insight into how different children/teens/adults with Autism are.

Part Two to follow soon!

ASD

Xavier turns 9!

Xavier turns 9!

So the end of January saw my “little” man turn nine years old! I really can’t get over how fast time flies by! I remember his birth so vividly! Honestly like it was yesterday! Two and a half weeks early he arrived at 2.14am weighing 7lb 11oz! Complete love at first sight!

baby

Well this year we didn’t do anything different to most …. small family gathering at our house. I think Xavier still finds even that difficult to deal with. He hates to be the centre of attention. Most of us were in the kitchen/dining room and Xavier was sat in the living room on his iPad for a lot of the time. He hates the limelight and hates any “all eyes on me” scenario.

cake

He chose his own birthday cake!! He chose well …. it was yummy!!!

Xavier was spoilt rotten with clothes, LOTS of books, a nice selection of Dr Who items including a 1000 piece puzzle and annual and DVD. He was a very happy boy.

He is so into his books and seems to have developed a new love for David Walliams books! He read a really thick book in 2 bedtimes! He said he couldn’t put it down! Since then has almost read a book a night! He is such a great reader and I am so pleased he has a huge love for books! He has learnt so much from them. His bed has huge hardback books in it that he insists stay where they are even though they take up more room than he does!

cousins

Here he is having fun with his big sister and 2 cousins! They all get on so well its lovely to watch them!

Was lovely to have all the family together! We really should do it more often!

So another birthday over…. Izzy in November…. she will be a teenager!! Oh..My…God!

Another battle underway….

Another battle underway….

I really don’t feel like this will ever end… or if it does… another battle will have to be fought!

When a child is issued a Statement of Educational Needs there are different sections to it. Part 4 in particular is the named school. The County Council believe that the named school will be able to provide the child with all the help that is listed in the statement. They have to, by law, put all of the help into place. As much as Xavier’s current setting is probably an amazing setting for children who don’t have additional needs, intact it is, my niece and nephew attend the same school and are thriving, I believe it is not the correct setting for my son. I personally don’t feel he is reaching his full potential here and don’t feel they have the resources to put all the things needed into place for him. So I have had to appeal.

I have had to name a school that I feel is suitable for Xavier and then send off an appeal form. The County Council and I then have to come to an agreement on a placement for Xavier and if we don’t I have to go to court and stand up and fight my sons case. If we don’t come to an agreement I think I might actually cry a little bit. Its been such a tough journey fighting for 3 years to get him a Statement. It is starting to take its toll on my health.

Any day now I should receive a call with an update on the situation. The County Council have had to contact the school I have requested to see whether they feel they can meet Xaviers needs. They have a certain amount of time to respond and that time is up. I had a missed call on my mobile on Monday morning from the County Council saying they had an update and could I call them back! I have been slightly neurotic since but all I can manage to get through to is a damn answer phone! I have now left numerous messages and am still awaiting a call back with this update! I am actually going out of my mind!

Obviously I will update when I learn about the update! Am keeping all possible crossables crossed! Please do the same that we have a positive outcome. I just want my boy in the correct setting, unleashing the huge amount of potential he has!

xavier

We are in the Paper!!!

We are in the Paper!!!

article

So exciting to be in the local newspaper about being shortlisted for a UK Blog Award 2015!

This is such an achievement for me. Ive had tremendous support from family and friends and appreciate every single person who takes time out of their day to read my ramblings!

Roll on April when I will attend the Awards Ceremony in London. Best get dress hunting.

There should be an online link to the article soon but as I type this it is not yet available. I will share it as soon as it pops up!

Such an exciting year ahead. I feel a great sense of achievement and anyone who knows me will know this is a rare thing!!

I truly don’t expect to win… just to be shortlisted is incredible.

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