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

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

Autism & Anxiety

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Dear Anxiety

It has been a while since you and I fell out. Today you made me angry even though I was not your target. You see my daughter is 6 and she is autistic. It makes her day to day life extremely hard at times as she attempts to navigate a crazy world and find her place in it. It’s not helpful when you come along and add to the mounting stress she feels. I know you often tag along with your friend autism, you seem to be closely connected.

We had a lovely play date arranged with some close friends in a park we often visit. The school holidays throw her out of her comfort zone but she copes really well with planning. It should have been a lovely day. Plan we did, prompt we did, talk it through and off we went. Some days there just isn’t enough planning in the world, you just seem to grab her regardless. My beautiful girl was crying, screaming and kicking the seat in the car. She hit her little brother, she threw stuff she could get hold of. Refusing to get out of the car we sat there, her crying and her brother unsure whilst I decided on the next best step for all concerned. You had her, you were winning.

I wanted to yell and scream at you Anxiety. I really did. I wanted to rip you out of my daughter and stamp on you a million times for what you do to her. I wanted to swear at you and boy did I have some select words just for you. I wanted to cry, truth be told, because I am exhausted, overwhelmed and often feel out of my depth trying to do what is best for her. Trying, as a parent, to make her world as easy and understandable as I can whilst at the same time keeping her safe. I have to think with/about/for her 24/7 and when you decide to stop by it is a hundred times worse because she becomes ‘flighty’. Likely to run at any given chance and with her lack of danger awareness, it is bloody scary.

Instead I wish to thank you, Anxiety. You see every time something like this happens it makes me a stronger parent, ready to face you the next time you decide to gatecrash our lives. You know what else? With my help (and maybe a little stubborn attitude) she got out of the car. She had a few moments on the floor waving and kicking her arms in the air and I let her. Why? Because she was releasing you. She was angry at the feelings she was having. Deep down she wanted to see her friends, to go on the swings, to eat the picnic we took with us. After she started to calm I bent down and gave her a choice – go to the play day or get back in the car and go home. I was calm and fair, she knew either would be OK with me and do you know what, she chose the play day and after a few more minutes calming she had a great time. It was a lovely day after all. You are a pain in the backside Anxiety and believe me when I say I HATE you, I really mean it.

Thank you for attempting to take my daughter down today, you have shown me even at the age of 6 she isn’t going to let you win. She made a choice to put you to one side, remind you that you don’t get to rule her life. She was able to release her feelings safely inside my car and make a decision to keep going. I would say better luck next time but that just suggests I offer you seat on our next day out so instead I will just bid you farewell for today but no doubt you will be back at some point. We will of course be ready for you every time.

Yours Sincerely

Eliza’s Mum