What do you think autism looks like?

There are so many things you can say to a parent or carer of an autistic person. Sadly some of those things are inappropriate, cruel or rude. One thing that I hear far too many times is just ridiculous. I bet you have heard it too often too…

“THEY DON’T LOOK AUTISTIC”

What kind of statement is that? I really don’t understand why on earth someone would think this is a good thing to say. I am a member of a few parent support groups online and today I have come across no less than 11 different parents that have been told their child doesn’t look autistic this weekend alone! Why? What possesses people to say something so utterly crazy? What do they think autism looks like? I am baffled, truly baffled at why we hear this all the time. So here it is, let me show you what autism looks like….

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Shocking isn’t it? She looks so much like a ‘normal’ young girl (another thing best not to say “Oh but she looks so normal”). She’s not green, she’s not a giant, she doesn’t glow in the dark or multiply if she eats after midnight. She is simply Eliza, an autistic child. So again I ask why people think it’s OK to suggest she should look different because she is autistic?

You can follow Eliza’s journey on Facebook at –

http://www.facebook.com/LivingWithBloomingAutism

Striving for continence

I don’t normally talk about something so personal but I thought it was worth sharing our experience as lot of children struggle with continence. Continence is something Eliza has always struggled with. She is seven years old and wears pull-ups both day and night. There have been so many hurdles to jump including fear of small spaces, fear of noisy hand dryers and just being in a place that is always different. Lets face it, at home it is easier as the bathroom pretty much looks the same but when you are out and about every toilet place looks, smells and sounds different. It has taken years and I mean YEARS to bypass all these hurdles and we have gone at her pace with the odd nudge forward if we thought she was ready. There was even a time when she was a ‘smearer’ and for months we went through a regular routine involving bathing and cleaning rooms. I’m going to visualize so many parents nodding because they know what I mean. For those of you that don’t, brace yourselves…. Eliza would smear poop all over her walls, her clothes, her face, the carpet and any other surface she could reach. Mainly sensory led we worked hard to overcome that stage and *touches wood* it’s been a very long time since we saw any of that. It has been a long process of reassurance, explanations and visual aids but we are so close now. By we I obviously mean she,  Eliza is the one working towards being continent but I say we as it’s a journey of hers where I have always been by her side guiding her and preparing her. During the last few months she has been using the bathroom more and more and trying really hard to be continent.

After a lovely meeting with the continence team this week we decided it was time to take the next step and move from pull-ups (nappies but shaped like pants/knickers) to proper cotton knickers (Eliza has chosen to call them knickers but some of you may say pants, undies, underwear… but as Eliza calls her pull-ups ‘pants’ we needed a different word).  As it is such a change we thought using washable incontinence knickers would be a step forward – these are simply cotton and look like normal girls knickers but with a built in cotton booster to help with little accidents, you know those ‘not quite made it’ moments. The hope is as time progresses she will then just move on to normal girls knickers in time. We have extra books ready to help her learn about how it’s quite normal to use the loo etc. This is when I decided on a plan that may help her take to the idea even more.

Eliza LOVES Christmas, she adores Santa and every December she pretty much bounces rather than walks. So I decided to write her this letter…

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This letter will be ‘delivered’ to her on Tuesday as she breaks up from School for the holidays. As you will see in the letter, we have mentioned Mrs Claus and a special present. To help Eliza with her next step towards continence and use her love of Christmas I am making up a pretty box, a ‘special present’ from Mrs Claus. Inside the box will be some pretty knickers, books, stickers and a new kids padded toilet seat (you know those ones you can move on and off as needed). It will be wrapped up and will have a letter from Mrs Claus attached. The fact that Santa, in his letter above, will have pre warned her about the present will ready her for the arrival of this special gift. This is the letter from Mrs Claus…

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So that is my plan and I hope it helps her on her transition. I thought the special box should come from Mrs Claus, you know, girl to girl as such. So there it is, my cheeky use of something my child loves being used to try and help her with something she struggles with. It wont work for all children, this is just something I know will go down well with Eliza. Although I hope it gives some of you ideas that things like this can work. It doesn’t have to be Christmas, it could be linked to a favourite character or film. This is just something I know MY child will adore and be amazed at. Eliza is very visual, she likes to see/watch and to read and she will read the letters over and over with joy. I am hoping it gives her that extra boost in confidence to at least try the knickers and we will just from there, at her pace like we always do.

A Special Little Girl’s Christmas

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Dear Santa

As another Christmas approaches fast, I always think back to one special meeting we had a few years ago. It was a visit that changed how my daughter (and myself) saw Christmas and helped her enjoy what can be a stressful time of year that is full of change. Back in 2012 we came to see you in your magical winter wonderland with Eliza who was 3 years old. It was extremely busy as every child on earth wants to meet Santa and who can blame them, you rock! We had to queue, something Eliza wasn’t very good at them. The queue was in a very very VERY busy crowd of people, another thing Eliza wasn’t very good with. You see Santa, autistic children struggle with crowds, noise, waiting, busy atmospheres and change but Eliza had only one goal in mind which was to meet you.

“Merry Christmas to you all, you have a special little girl”

We spent what felt like years in a queue trying to entertain her as best we could and eventually reached the front of the queue. One of your kind elves led us to a door which opened and there you were waiting for us. The room was amazing and I was lost in the magic of Christmas as I admired the tree, the decorations, the smells and the lights. Eliza ignored you as you tried to ask her what she wanted for Christmas and whether she thought Mummy had been good that year (For the record Santa I am pretty good most of the time, honest). I nervously stepped forward and said “I’m sorry, she can’t talk yet” and you looked at me, smiled and nodded. Eliza wandered around the room being nosy, looking at her face in shiny baubles and picking up things that caught her eye. I started to move in a bit of a panic but you touched my hand and said “Leave her be, she’s OK. Nothing in here that can hurt her”.  A grumpy elf knocked and suggested time was ticking by but you kindly said we needed a little longer. Eliza carried on looking around and then she finally looked at you and came and sat by you. You quickly took this opportunity to greet her again and she smiled. She started to flap, it’s something she does when she is happy. Spontaneously Eliza leaned in towards your hand to give it a kiss at the same time you clicked a secret button to take her photo with you. I thanked you about a million times (probably at least ten in reality) because you made her visit so relaxed and comfortable. As we left the room you grabbed my hand and said “Merry Christmas to you all, you have a special little girl”.

The words you said to me have always stayed in my head. Every year we approach Christmas and I think of that one visit to see you. You see Santa what you didn’t know was that three weeks before we met you, Eliza had received her diagnosis of Autism with moderate-severe learning difficulties. She could not speak other than 2 or 3 words. The world overwhelmed her and she struggled to find her place in it. You made her feel so at ease and she had a wonderful time seeing you. For me as a parent I am so grateful to how you treated her and for the kind things you said to me. Thank you Santa for taking the time to let her anxiety drop, for letting her explore and just being understanding and kind. 

Eliza’s mum xx

Why buying Christmas gifts for my Autistic child is hard

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We love Christmas in the Blooming household. The smell of the tree and the dinner cooking, twinkling decorations all over the house and cheeky cats trying to nab baubles off the tree. Being swamped in wrapping paper and wishing you had purchased something square shaped because you are about to throw a gift out of the window because wrapping it is impossible. It really is a wonderful time. Like a lot of parents, I over shop and especially present wise. In fact for the last 6 years running I have had presents put away for birthdays the following year because I get so carried away. You think I would know better by now? Thing is, when you find something your autistic child is in to you automatically overdo it because it is so hard to shop for them at times. Eliza can have rigid and limited interests for months at a time and then all of a sudden she is in to something in a huge way and it is exciting for both her and the family. So yes, once I know what it is that has caught her attention I hit Google and search for everything to do with it and dish out the present requests accordingly and voila, one happy and contented Eliza at Christmas and a sigh of relief from all who struggle to buy for her. (I will add that this is now ‘the norm’ as family wait for me to suggest what to buy than get a present that isn’t suitable or will just sit in a cupboard for years). 

Before Eliza’s diagnosis I would go out and get toys and gifts that were suitable for her age. That’s what we all do yes? We look at the boxes and see the necessary ‘Suitable for….’ and statements that suggest this would be good for her learning the alphabet or that would be great for fine motor skills…..and then buy a bunch of age appropriate toys that would then go sit in a dark lonely wardrobe for months, sometimes years because she doesn’t understand how to use them or simply can’t because her fine motor skills are so poor. 

These ‘age appropriate’ toys were far from appropriate for my daughter.

After diagnosis (Eliza was diagnosed weeks before Christmas when she was 3) I still went out and got age appropriate toys as usual because at this point I still had no idea what I was doing. It wasn’t until we stated speaking to other parents with Special Needs children that we realised we needed to rethink a lot of things. Everything was a learning curve but we quickly realised that we needed to put a lot more thought in to Christmas and Birthdays. I had expensive toys just sitting there in boxes because she wasn’t interested. Eliza would rather play with the shiny bows from the wrapping or the bubble wrap it came in. Instead of picking up her shapes games and number learning toys she would flip her dolly pram over and spin the wheels for entertainment. These ‘age appropriate’ toys were far from appropriate for my daughter.

It’s not easy to buy gifts for an autistic child. It can actually be quite heart breaking to stand in an aisle full of beautiful dolls, tea sets, teddy bears and realise you may not see that kind of happiness and excitement in your daughter. You feel a little robbed of memories you have not yet had and may never have and then you worry that your child is missing out on such wonderful experiences. It’s a roller coaster of emotions as you battle against ‘the expected norm’ and what your child actually needs/wants/understands. So you go shopping and you pick up a few toys to take to the counter and pay. They are all for younger children and you can guarantee the cashier will ask you that one question you don’t want to answer… “Gosh how lovely are these toys, how old is your ‘little’ one?” and you take a deep breath and say “She’s almost 8” which leads to awkward silence and then explaining of why you chose them in the hope of spreading a little autism awareness so that when the next parent they meet is doing similar they wont look so disgusted or horrified. 

What you need to remember.

  • They are YOUR children and you know their needs, understanding and any limit to abilities
  • ‘Age appropriate’ does NOT mean it may be appropriate for any child in that age range. All kids develop differently so don’t be so hard on yourself because it’s the expected ‘norm’.
  • Every child is different and for some autistic children, age appropriate might be fine so go with what you feel best that suits them.  

It’s not easy buying gifts for an autistic child

One of the hardest things I did was to explain to friends and family that were buying things for Eliza that were never going to be used and to kindly stop. I felt so awful that they were spending hard earned money on beautiful toys but really it was being wasted. Not because Eliza was rude, not because she is picky or spoilt but because she simply wasn’t ready for that kind of gift at that time. So it was a learning curve for all of us but everyone understood. In our house we have two sides to gift buying and they are so very different. On one side you have Eliza who can be very limited in her likes and age appropriate doesn’t work for her but when she finds something she is in to you are on to a winner. On the other side you have Noah, her 2 year old NT brother, who wants every single toy he see’s on every advert or poster and age appropriate toys are quite good for him and his milestones. So yeah, buy for YOUR kids what you know they want/need and don’t worry about ages, brands etc. Most of all, enjoy Christmas together. 

 

 

The biggest thing that worries me is a thought no parent wants to have

Every single parent goes through moments of wondering what the future holds for our children. For some it is about college, University or employment and for others it could be wondering if they will get married, have children of their own. Those are daydream moments you get that leave a smile on your face. I have a child that has Autism, her learning disabilities classed as ‘moderate-severe’. As much as she improves on a daily basis with her social skills, understanding, communication; it’s unlikely she will live alone and always need some level of support and supervision. It worries me all the time, the future. For the time being she spends most of her days at school, loving being with friends and learning what she can. There will one day come a moment that scares me, the day she becomes classed as an adult. Long before then I will do my best to plan with her what she wants in the future but things change all the time.

“They finish school and do what…”

Services for adults with autism in the UK seem to be a postcode lottery with some areas having great resources and support, others having none. I have friends with older children who have now left school and have nothing in place because respite spaces are tight, funds constantly reduced and generally all services being cut or restricted. So the young adult ends up at home, with parents trying to fight a system that gets harder every year. What does the government expect the parents to do? Leave employment and take care of our children/adults relying on the pittance carers allowance they pay (£62/$81 a week for full time around the clock care). I know there are other benefits and financial help out there but the point being these children will one day grow up in to adults. Autism doesn’t go away, it is a lifelong condition. They finish school and do what? End up at home because of cuts to services, placements and support. It worries me, a lot. Eliza is only 7 years old so a lot can change in the years before she is legally an adult. I sincerely hope there will be more services in place by then.

“What happens when I die…”

The biggest thing that worries me is a thought no parent wants to have. What happens when I die? Who will take care of her? Will she manage without me? Who will understand her like I do? I could go on and fill this entire blog with questions that have gone through my head. She has a wonderful bond with her younger brother already and I know he will always be a part of her life but he will have his own life to lead. I would never expect him to take over her care in the future, even though I am sure he would. Sometimes I can’t sleep because of this question, what really will happen….. I have seen other bloggers write about similar thoughts so I know it isn’t just me thinking these things. We all worry for all of our children regardless if they have Special Needs or not but for those that are extra vulnerable, it sits at the back of your mind all the time.

“I push her comfort zones because she needs it”

 

Friends often comment about how much I do with Eliza, how we have tried so many different things already – ballet, gymnastics, cooking club and horse therapy to be a few. Why? Because she doesn’t willingly offer me information on what she wants or needs sometimes so all I can do is try things with her and expose her to new experiences. I test her boundaries and I push her comfort zones because she needs it, she needs to learn that the world will do this to her for the rest of her life. As much as we try and maintain a great routine, I often break it in the hope to show her that it’s OK when things do not go to plan because, let’s face it, life doesn’t always go to plan. If she can learn coping techniques and how to be a little more flexible, these will be great for the future for her. I will always try and show her new things, to keep teaching her about life. I read something on a Facebook page last year that has stuck with me ever since. It was a picture of a young lad and the words read something like “The greatest gift I can give him is to teach him how to live without me”. It hurts to read and type that because it hits home. One day we won’t be here for them, they will go on to face this world without us. We can hope services and employment opportunities will be there and that somehow a support network will guide them through what they need. So for now, I test Eliza’s flexibility and I try and expose her to new things. I help her come to terms with change, learn to cope with it. I push her boundaries so that she becomes used to different scenarios, situations and problems even now at the young age of 7. I hope to keep giving her the support and courage to try new things and live life to the fullest. This is all I can do as a parent because, like that post om Facebook said, she needs to learn to one day live without me.

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If stripping was in The Olympics….

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Are you watching the Olympics? I love it and often sit here making remarks like “If Eliza were in that contest…..”

If stripping was an Olympic sport, Eliza would win Gold every single time. In under twenty seconds she can undress and sit back on the couch, remote control in hand and Mickey Mouse on TV yet this is the child that simply can not undress herself for bed or PE at school…..

Flapping!!! Another Gold, she seriously looks like she would take off sometimes. Flappy when happy though, beautiful smile she has and when she is laughing she has a dimple that is super cute. I wonder if she could flap through high jump, she definitely has the long legs. We tried Gymnastics before with her, she told me how bored she was after only 2 sessions.

Sprinting, well I think we would all have gold medalists on our hands. Someone opens a bag of crisps and whoosh, she is off like a highly trained sniffer dog! Don’t ever forget how fast they go from ‘dead weight laying on the floor refusing to move’ to someone that would give Usain Bolt a run for his money at the blink of an eye.

Shot Put is another. Wow, how I have seen iPad’s and juice cups fly. Not to mention shoes, DS consoles, remote controls, siblings….

A judo/wrestling combo is something that happens daily in our house between Eliza and Noah. That grabbing of clothes, linking legs and throwing each other on the floor. Usually to decide who gets the TV remote or the last pack of crisps. Oh or a toy that neither of them played with for months yet one of them found and it’s suddenly like treasure!

Weightlifting I think belongs to us parents. Lifting that ‘dead weight’ child from the middle of roads, car parks, parks and bundling them safely in the car. Carrying them up the stairs or removing them from the top of a sibling they are sat on. I should have muscles like Popeye by now.

I love to reflect and I have learnt many things from what I have just written above…

– I watch too much Olympics
– A lot of issues are caused by crisps
– I need to get out more

Enjoy your Tuesday and the Olympics xxx

You can follow us here Living With Blooming Autism

Five awesome cheap activities to do with the kids

 

 

cropped-822524745o4tleq2tie5zril.jpgAlthough we do a variety of things during the weekends and school holidays, these are probably the five that are most enjoyed by my children and have led to hours of fun. They are all also relatively cheap to do and set up as well as easy to store away for another day (other that the gingerbread, please eat and enjoy that).

 

Play-Doh

Fairly cheap to buy and many accessories to add to make it fun and also great for helping with social stories. We have the clown and his hair grows so you can cut it. You can make pies to balance in his hands. This really helped my daughter conquer her fear of having her hair trimmed and she found it fun. Play-Doh is really good to learn cutting skills, rolling, shaping and great at improving the hand muscles which in turn help fine motor skills. It’s also amazing for letting imagination run wild. We have made Play-Doh cakes, animals, flower garden, faces….. you can make anything you want. It is also fairly easy to clean up afterwards and put away for another day.

Decorating Gingerbread

Another fairly cheap activity and even more fun if you make and bake the gingerbread yourself. Of course they don’t have to be shaped like a person. On the few times we baked in the past we have made gingerbread flowers, houses, stars, trees (apart from summer, this is also a fab winter activity. At Christmas get the kids to decorate festive shaped gingerbread and pop in a jar or tub, add a bow and you have a lovely home made gift for someone). Any shape you wish really, the kids love decorating them. We use a variety of things to decorate – icing in different colours, smarties, jelly beans, hundreds & thousands. Can help coordination, fine motor skills and encourage choice as well as the added bonus of testing touch, taste, smell. It is a great activity for creativity and imagination and of course quite a tasty one!

Kinetic Sand

Prices have come down recently for this so once you have your basic quantities it is quite a good deal money wise. Many packs come with a box to store the sand in a few moulds, rollers, mini spades. We purchased a couple of inflatable trays to use the sand in (as in photo below) and this helps keep the sand in one area and keeps it easy to tidy (and if you have more than one child, stops the fighting if they have a tray each). It’s a good sensory activity and leads to much creativity and imaginative ideas. It is available in a variety of colours and is a perfect activity for indoors if you find yourselves stuck indoors on a rainy day.

Painting 

Most kids enjoy making a mess!! Paints are quite cheap to buy, as are a few brushes and rollers, sponges, rags. You can even paint with hands, fingers, feet! Paper is the cheapest choice but you can pick up some lovely blank canvas in the sales which make beautiful gifts for friends and family once decorated by your children. We have recently painted wooden bird houses, money boxes, little wooden treasure boxes, canvas, paper masks, balloons, plain white tiles, pasta (uncooked, in case you wondered 🙂 and you can then thread them on string and make pretty jewellery). Just be aware that if you have a stimmer like Eliza, a lot of other stuff gets painted when the ‘flappy when happy’ arms start – hair, tables, floors, cats, noses…… You really can paint anything you like and it can lead to a lot of messy fun. Throw in some glitters, stickers….. whatever your imagination fancies.

Bubbles

Probably the cheapest activity and can be used in so many ways. You have your normal tub of bubbles and a small wand that the child blows through. Simple and fun. Also highly effective for super anxious and upset children/adults to do as it encourages steady breathing in and out. Calming themselves and they don’t even know it. It’s a sneaky weapon I use when Eliza is anxious, I send her outside with bubbles. She thinks she is going to blow fun bubbles, a distraction as such and she has no idea that what she is doing is quite soothing and calming. Don’t forget you can get large bubble wands that can be waved in the air (perfect for the child or adult that can’t control breathing yet or needs a sturdier, larger wand), bubble guns of all shapes and sizes.

Thanks for reading. If you try any that you never did before then I hope you all really enjoy the activities. You can follow Eliza’s journey over at….

https://www.facebook.com/BloomingAutism/