Another New Year

How did 2019 arrive so fast? In the blink of an eye it is here and everything is back to ‘normal’ after a very festive period. The first week of January was stolen from us by the winter sickness bug, both children as its victims. Eliza coped really well considering she hates feeling and being sick. In fact, she’s got the patient thing perfected by really playing on it to her advantage. “Mummy, can you bring me a teddy…… can you get me a drink please……. I need ice cream…… because I’m poorly”. Each request met with a cheeky grin when she felt a little better. I’m glad the bug has gone away. I’m very glad it never grabbed me as well! A day of cleaning every single surface and floor made me feel a whole lot better after a week of germs.

School has been back for one week already. Just like that, a brand new term started. Eliza came home today with two awards. One for excellent reading and the other for completing 10 metres front crawl in swimming. She’s had a great first week back although the first few early mornings were a struggle and she actually napped on the journey to school. She has homework to do this weekend, write an essay about her Christmas holidays. Eliza is not a fan of written work, her fine motor skills are poor so she struggles but she loves Christmas, I mean REALLY LOVES it, so she’s happy to write all about it. We might be in January, we might have taken the tree down and all decorations, but she’s still singing Christmas songs and watching Christmas films and asking how many sleeps until Santa comes again. Once we get to the summer holidays (wow they seem so far away in July and August) she knows her favourite times are about to start – Halloween, Bonfire Night & the whole run up to Christmas. First though, she has a birthday to look forward to. In March she enters the double figures…… 10!!! She’s so ready, I’m so not! How is she growing up so fast?

2019 will be whatever it is. I’ve entered it with a fresh mind, no expectations or demands but a hopeful and positive attitude. This time last year I was in a dark place, needing therapy and medication to help me get through everything. A year later and for the first time in years I actually feel like me and I’m remembering who I am. It’s refreshing so I’m taking that with me this year. Working on me a bit more as I’m an expert at neglecting my own needs and putting other first. I have some amazing friends and family behind me so feeling very loved and lucky.

Enjoy your year, whatever it brings you. The past is called the past for a reason, don’t waste too much time pondering what should be left behind. No matter what the years brings, chase it and embrace it. Forward is the way, always forward.

This has been a blog prompt from the great ‘Finish the sentence Friday’ group based around ‘OMG, It’s January!’ and hosted by the fabulous Finding Ninee and Undiagnosed but okay

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How I help prepare my autistic child for the Christmas period

Christmas is a wonderful time of year for us, I absolutely love the Christmas holidays and so do both of my children. Not everyone feels the same though, and it can be a very stressful and distressing time of year for some. As much as Eliza adores Christmas and everything to do with it, she can become quite overwhelmed by all the lights, music and decorations because pretty much everywhere changes – home, school, shops, town, café’s…. Her love of the holidays clashes with the visual and emotional need for sameness and routine. She becomes quite hyper and struggles to concentrate because her surroundings, no matter where she goes, are different. Eliza copes well at this time of year thanks to a lot of planning, taking things at her pace and incorporating her needs in to everything that happens during the holidays.

When decorating the house, it’s done in stages. Little and often so she has time to adjust to the change in layout of furniture, the sudden Christmassy smells and lights. Advents are always out first ready for the start of December and she sees this as a reminder that decorations will soon follow. The tree is always last, as we get a real tree, and she knows that when the tree is up and decorated, that’s it. So again, she uses this as a reminder that all is done decoration wise. She’s never really been bothered about helping with decorating the tree, but I always offer so she has the choice. She likes to arrange the nativity scene and hang up the stockings, keeping her included with some things she enjoys. We always have a countdown board, so she knows how many sleeps are left until Christmas morning, and this takes away so much frustration and anxiety. Because she can see the numbers, she finds the whole period much more relaxing and enjoyable. When she was younger, we used picture visuals and social stories, so she could work out what was going to happen next but these days she’s very aware of Christmas and the countdown board works great.

Having a quiet safe space is really important to Eliza. At home, it is her bedroom. She will tell me she needs some time alone and she’ll go watch a film in her room or read a book. In such a busy period, she needs time to relax with little or zero social interaction. Her room remains as it usually does with all her cuddly toys, blankets and fidgets. She can go up and escape Christmas and all decorations and music in the safety of her own room. When out of the house it’s harder as almost everywhere is decorated and busy so if needed, we head back to the car and sit listening and singing along to the radio or sometimes just chatting. For Eliza, she can refocus, relax and feel safe. Planning is priority when going out at such a busy time. I like to have a few locations saved in my head for any emergency rest/chill moments that may be needed. I struggle with anxiety myself (so does Eliza) so I’m always aware of places we can ‘escape’ to if needed. Even though they are most likely decorated for the festive season, libraries offer a calm and quiet atmosphere and there is always room in the swimming pool café (The added bonus is that Eliza finds watching water very soothing and calming).

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Presents can be a time of sensory overload and extreme anxiety. We have friends who do not wrap the gifts because their child just cannot cope with the anxiety caused by the unexpected surprises that gifts offer. Eliza copes well with not knowing what she has, it’s more the volume of gifts that can make her overwhelmed. So, like the decorating, little and often is the approach for us. She likes to have all her gifts in a pile, so she can work through them as and when she chooses to. Sometimes she asks to open gifts on Christmas Eve and sometimes she still has gifts to open on New Year’s Eve, her choice. Having that sense of control helps her relax and enjoy Christmas on her terms. Family and friends are very understanding regarding gifts, they want Eliza to enjoy herself, so they are happy to go by her lead.

Food is the final thing to plan for. Eliza’s dietary intake is quite rigid, and I never expect her to eat a Christmas roast dinner just because it’s Christmas. It doesn’t upset or offend me that she’ll ask for pasta and sausages, and that is exactly what I will cook. I always offer her Christmas dinner despite knowing she’ll politely decline, but it includes her in the moment (plus you never know when she’ll change her mind and want to try something new). I’ve read on social media in past years that people have become upset that their family were disgusted because the child asked for chips and sausages for dinner rather than turkey……Why? It’s just food! It’s a beautiful memory of an amazing day regardless of whether it has turkey in it, chips or a take away! If food of your choice is forced on a child, it’s going to lead to upset and distress. So, I’ve always cooked whatever Eliza wanted and she’ll join us at the table on Christmas day with her cheesy pasta and countless pigs in blankets (a festive favorite of hers) and she loves being part of the Christmas day meal.

Christmas is a beautiful time of year and if planned for, can be a calm and relaxed event. Being together makes it a perfect time, not the decorations or the gifts or even the food. Time spent with those you love, that is the important thing and it’s finding a balance to keep everyone happy and include everyone and their needs, which is why I help Eliza enjoy it on her terms and with her needs always taken in to account.

 

***  This was a blog I did for Firefly. You can read it here  ***

 

Conversations & cuddles at silly O’clock in the morning

Eliza is not a great sleeper and she is often awake until midnight or after and many nights she can be up two or three times especially if something is on her mind. Recently we’d been to a summer fun day and her brother had a glitter tattoo on his arm. Eliza was adamant she didn’t want one but in the early hours of the morning almost two days later she woke me up begging me for a glitter tattoo. I explained that this would not be possible right now but she sat on my bed and told me she needed it to happen or she couldn’t settle. It’s like she has to tick a certain box in her brain to allow her to move forward. So I quickly pulled a highlighter pen out of the drawer next to my bed and drew a smiley face on her arm for her. That was her tattoo and that was enough for her to smile and go back to bed and she did sleep that night.

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I promise my art skills are better than this, but this was done with my eyes half-open and my brain half asleep!

My bed is a place you’ll often find Eliza between the hours of 1am and 5am when she just ‘drops by for a chat’. As tired as it makes me, I love our conversations in my bed. I also love the fact my mobile charges next to my bed so Google is on hand to help me out with her random questions or conversation starters. Here are a few examples of the things she talks about when she joins me in bed….

  • Can you cry on the moon Mummy?
  • Why do feet grow?
  • If I had a Unicorn, I’d call him Trevor. What would you call it Mummy?

We’ve also had Christmas carol singalongs (In June!), discussions about roller coasters and I already know her Christmas and Birthday lists.

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Doesn’t matter if it is 1am or 6am, who could be mad at that beautiful face?

My son, Noah, is a great sleeper. At 4 years old he can sleep through thunder storms, car alarms and his sister having a meltdown or pacing the house. Even on the odd occasion he falls out of bed, he barely wakes up. Just climbs back in. There are times he has bad dreams in the early hours of the morning and these are the times he joins me in my bed for a talk and a cuddle. Once settled and reassured he often returns to his own bed but sometimes he falls asleep and stays in mine and it’s lovely watching his squishy little face as he snores.

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Not much wakes Noah. Look at that squishy face….

My bed is never just my own. If neither child is in it, the cats are on it. They love my bed as much as I do. The two of them are also responsible for waking me up many a time at silly O’clock to tell me they are still hungry or bring me half a mouse (So then I can’t sleep anyway for wondering where the other half is……), or to just wake me to move me so they can get comfy!

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Bella at the front (or generally my left knee area that she uses as a pillow). Lola at the bottom, also known as ‘Lola the foot grabber’.

Thanks for reading. This was a prompt for ‘My bed…..’ in a group called ‘Finish the Sentence Friday’ hosted by Sporadically Yours and Finding Ninee 🙂

 

Our December

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December is here. The countdown to Christmas has begun as advent calendars and candles start, countless elf on the shelf pictures appear daily on social media and generally the shops in town suddenly get busier each day on the run up to Christmas Eve. Of course, Christmas songs started on the radio as soon as Bonfire night was over! Our house is decorated, minus the tree that we collect in a weeks time. Both of my children love Christmas but especially Eliza. It’s her favourite time of year. She loves the lights, the tree, her letter from Santa, Christmas films, driving past all the houses lit up at night… Her love of Christmas and Santa helped Eliza on her journey to becoming continent too, with a little help from Mrs. Claus as well (Striving for Continence) . This year I’ve added something new. We have an elf, although he’s not on the shelf. I’m not doing it for monitoring or encouraging behaviours, the elf is not reporting back to Santa etc. I’m doing it because I think the kids will find it funny and have a giggle. You see, our elf is a very cheeky elf and he’s going to get up to some light mischief on the run up to Christmas, simply to entertain the children. That’s the way we’re doing it anyway.

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All presents are already purchased and hidden in the house ready for wrapping.  I’m an early shopper, once September school term starts is when I start picking up a gift here and there. I find it very hard to buy for Eliza every year. She has her safety net of favourite things that never change (Super Mario, any gadgets, Mickey Mouse, Sonic and Dr Seuss) which is a blessing for me as I can always find something she’d like. Other than those few things, her tastes change often. This year has been a little different. She had some ideas of her own and told me. The last few months she’s grown up so much in what she likes and how she behaves. Eliza would like an MP3 player because “I wants pop songs on it, big headphones and I can take it in the car”. She’s recently changed from listening to Disney Soundtracks to asking for pop music. Taylor Swift’s ‘Shake it off’ has her up and dancing before you can blink. She’d also like a bag and a purse so she can carry her fidget stuff around and her pocket money. My baby is growing up yet I can still see her in her red dress for her first Christmas, wide-eyed at the sight of Santa arriving at play group and then attempting to open her gift by eating the paper. In fact, I found that exact photo…

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Every year we visit Santa and this year is no different. I have a feeling we will be visiting Santa for a fair few many years yet. Eliza totally believes still, it’s more likely her younger brother will find out the truth sooner than her, at 3 years old he already noticed how Santa looks different on all the TV adverts! So yeah, we visit Santa every single December and she loves it. She ups her stimming in December, ‘the Santa effect’ I call it. She flaps and jumps so much with excitement I seriously think she stands a chance at flying one day. Her innocence is just so beautiful. As soon as she sets eyes on Santa though, her words disappear in a ‘star struck’ kind of way. Last year when she saw him she whispered quietly “He’s really here” and couldn’t stop smiling.

We try to take part in the local festivities too, the Carol Singing and lighting up the tree. I’ll be attending Eliza’s School for a few Christmas themed things and Noah has a Christmas party at nursery to enjoy. I’m taking Eliza to the theatre in a few weeks to see ‘Wind in the Willows’ followed by lunch in McDonald’s and buying some sweets from the shop before going home. That is our mum and daughter afternoon out (Noah and I go to kids farm and play place together one day when she is at School, that’s our afternoon out). We’ll have a drive around the local area now and again in the evenings to check out the lights on people’s houses.  So for us, December is pretty amazing. Sadly not everyone enjoys Christmas and the run up to it. It can be really distressing for many children and adults as everywhere suddenly looks, smells, feels, and sounds different. The routine is completely thrown out so just please be aware that not everyone will find it easy at this time of year.

Thanks for reading. This blog was part of a ‘Finish the sentence Friday’ and the topic is the holidays and the approach to them. Hosted by my wonderful friend over at Finding Ninee

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A Christmas nudge in the strive towards 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. Eliza 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. It has been a long process of reassurance, explanations and visual aids but she is so close now. 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 regular girls knickers in time. We have extra books ready  and social stories to help her understand as much as possible. This is when I decided on a plan that may help her take to the idea even more, a nudge in confidence by writing to her from one of her most loved people, Santa!.

Eliza LOVES Christmas, she adores Santa and every December she pretty much bounces through the month rather than walking. So I  wrote 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 help ready her for the arrival of this special gift. This is the letter from Mrs Claus…

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So that is the 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 but with the added mention of her in Santa’s letter. 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 with love and patience, like we always do.


***Editing on 30th November 2018 to add that the above went as expected and Eliza was thrilled with her special present from Mrs Clause and within 2 weeks was completely continent and has been ever since. She never bothered with the padded pants, she chose the regular knickers. She still mentions her special letter from Mrs Claus around this time of year***


 

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