Favourite Things (of Eliza)

This is a Listicle Friday post from the ‘Finish the sentence Friday’ group I am in although I’m finally adding my efforts on Sunday because, well life is busy as usual. This week we have to list ten of our favourite things so I thought I’d ask Eliza what her ten favourite things are and write about those. Some of her answers really made me laugh.

Pasta – Yep, seriously! One of her favourite things in life is pasta. She’d eat it every day if she could and it has to be plain with no toppings or only grated cheese. No other ways will do. Since asking her about her favourite things and her saying pasta, she’s now asking for pasta so I guess I know what I’m cooking tonight.

iPad – No surprise there. She loves her iPad and her precious Roblox game. Not so long ago the iPad was her means to helping her communicate with ‘talking software’ similar to PECS (Picture Exchange Communication System). Nowadays it’s all about the games. And the music. Eliza recently found a love for pop music after years of Disney tracks so she also has her iTunes play list on there which includes Taylor Swift, Queen and Ed Sheeran.

Her new knickers! – Oh how I laughed. But yes, her new knickers are amazing she says. She likes the boy shorts style ones and recently I got her some that have the word ‘whatever’ repeatedly printed around the waistband. She thought that was hilarious and now they are her favourite pants lol. Whenever she wears them she says ‘whatever’ in a kind of 8 year olds attempt at an attitude tone.

Super Mario – Especially playing Mario Kart 8 and Super Mario Maker. She has cuddly toys from the games, a racing track, a hoodie, socks… Eliza just loves Mario and has the games on her Wii-U and DS consoles.

Jaffa Cakes – On the off chance you’ve never heard of them, they are chocolate sponge like biscuits with an orange squishy centre. She loves them and would eat them all if she got her hands on them. Here, have a picture.. United biscuits sale

Adventure Time – An animated TV show that I just don’t get but she does and it’s one of her most watched things. “Twelve-year-old Finn battles evil in the Land of Ooo. Assisted by his magical dog, Jake, Finn roams the Land of Ooo righting wrongs and battling evil. Usually that evil comes in the form of the Ice King, who is in search of a wife. He’s decided he should wed Princess Bubblegum, though she doesn’t want to marry him. Still, he persists in trying to steal her away, and Finn and Jake, along with Lady Raincorn (a cross between a unicorn and a rainbow) do their best to keep her from harm”. To me it’s just background noise but she loves it and can talk about it at great length when she wants to. 

Special Days – OK this one melted my heart a lot. As much as we enjoy family time together I always do separate things with each of the kids (because they are in to different things, different ages and I think it’s nice to have quality time with each). I recently took Eliza to the theatre for a relaxed performance of ‘The Wind in the Willows’ and she loved it. Sat for the whole thing, laughed and clapped. It’s been something we’ve worked towards for a long time as anxiety often stops her enjoying things. On New Years Eve morning she decided she’d like to go to the cinema to watch ‘Lego Ninjago’. She’d not been to the cinema for years (anxiety) but with her new found enjoyment at watching Lego related animated shows on TV, she wanted to go. So we did. She sat through the entire thing equipped with sweets and a drink. She really enjoyed it and has asked to go to the cinema again so I keep telling her what is on, so when she likes something we can go. ooi98u8

Trumping – No, it’s nothing to do with Donald!!. Eliza is giggling away after saying this. Politely it means breaking/passing wind but she thinks this is a hilarious answer so here it is. #ShesStillLaughing   #TheThingsSheFindsFunny

Paddling Pools – Nothing she likes more in summer than a splash in the pool and a water fight. On hot summer days here I often see what has become known as the ‘school to pool’ transition. Basically there is a straight line from our front door to the back door. Eliza gets off the school bus and walks in, I tell her the pool is filled. In the few seconds it takes for me to close and lock the door and put her coat away she has already stripped completely and looking for her swim suit, leaving a trail of school uniform behind in the hallway. Yep, ‘School to pool’ lol

The House – She loves the house we live in and the surrounding area. We live close to forests to often see deer, foxes, hedgehogs, red kites and many more. We have a park we can walk to in five minutes and a lot of open green areas. Eliza loves her bedroom, it’s her fun and safe place to be. Our local area do carol singing at Christmas, Halloween trick or treat locally, Summer fun days etc. It’s very family orientated and very inclusive. I think the move here was the best thing for her and her brother.

So there you go, Eliza’s current most favourite things. She’s a funny character and there is never a boring day here at home. This, as I said above, was part of ‘Finish the sentence Friday’ and the new listicle thingymebob. This week hosted by Finding Ninee and Sporadically Yours

 

 

 

 

Advertisements

Blooming Rainy Days

It’s August, and I can’t believe we are having such a rubbish summer weather wise. It’s been non stop rain for almost two weeks now, making it very hard to occupy the kids as they are off school until September. We’ve pretty much killed the play doh we have used it that many times, we can do all puzzles with our eyes closed and as for cakes…. We’ve made that many cakes that I almost fell off the scales in shock at slimming club when they said I’d lost last week! I’ve lost count of the amount of times that both of them have said “Mummy, stop the rain please so we can play outside”. Yesterday the rain stopped for most of the day and everyone went to the park and pretty much stayed there for hours making the most of the weather. We were lucky that a park opened just 5 minutes walk from the house so when the weather is good, we can head there and have fun and if the weather changes we can be home pretty fast. Eliza loves sitting at the top of the slide and looking over to the forest, people watching or admiring the birds flying in the sky. She can often be found sat there stimming away and just loving being outdoors. We also have plenty of things in the house to keep us occupied thankfully. Every year between June and July I stock up on things for the kids to do during the school holidays – lots of arts and crafts especially painting trinket boxes, decorating face masks and making silly hats etc, tie dye t-shirts to create, planting flower seeds, card making things, bead threading activities and other things. It gets us through the summer, especially on those rainy days.

It’s August, and I can’t believe Eliza completed a whole year at her new School in July. Where did that year go? She is so happy there and thriving. Her school report was amazing and it was lovely to watch her in sports day in the relay race. We were once told by a pediatrician that Eliza would never speak, read, write….. In true Eliza style, she is proving them wrong all the time. She loves reading, really enjoys her books and her speech is improving all the time. Her writing is something she has always struggled with. Fine motor skills are not easy for Eliza but she never gives up trying (although a fair bit of anxiety led verbal protests often happen before she picks up a pen). Friends that have been to see us recently have commented on how tall she is getting, how different she is each time they see her etc. In the last few months Eliza has started enjoying pop music and loves a good sing along in the car. She has also taken a keen interest in playing chess on the kindle after a friend let her play chess on his phone a while back. It’s wonderful to see her personality shining through and her willingness to show us what she likes and enjoys these days. She is growing up so fast.

It’s August, and I can’t believe that in just a few weeks Noah starts nursery! He is so excited and when his uniform arrived he just had to try it on. Well, he looks so grown up and very pleased with himself. This year he has really changed and he has the most sensitive, caring and loving personality (oh and very cheeky of course). Considering what he went through last year with operations, hospital stays and endless medications, he is just doing great. He has asked about nursery for so long he just can’t wait to go. Recently he had a settling session there and he cried because he didn’t want to come home, he wanted to stay and play! My little boy is going to nursery. He is ready, I’m not sure I am!

Well, summer might be a wet and cold one, but the kids are doing just great and whether I like it or not, they are both growing up. They are so different in personality, but so close despite their differences. They play and fight like siblings do. I am so very proud of them both.

Fbsgtdij

 

This blog was written for ‘Finish the Sentence Friday’ hosted by the wonderful Finding Ninee

 

Changeable Mum

For almost three years I was a sign instead of a spoken word. Eliza had regressed and lost speech, she could not say that word that so many mums take for granted, ‘Mummy’. It was hard sitting in play groups and hearing children calling for their parents whilst Eliza sat happily on her own in silence. There was no “Mummy, come look what I have painted” or “Mummy, come see”. We relied on Makaton sign language to communicate. I longed to hear her say the word but instead she tapped three fingers on the palm of her hand which is the sign for Mummy. I was so proud that she could sign but at the same time my heart ached to hear a voice. But she knew who I was, she knew I was Mummy and that in itself was wonderful.

When Eliza’s speech started to return one of the first words she said was ‘Mum’. I was cooking in the kitchen and she tugged at my top wanting something. I asked what she wanted and she pointed to a toy she could not reach, pointed to me again and said “Mum” before pointing back to the toy. I cried. I’d waited a few years to her speak and I felt overwhelmed and relieved. It gave me hope that other words were still to come. To me it was the most wanted word in the world and I finally heard it. Since that day I have been called a variety of mum related words – Mum, Mummy, MumMum (she even made me a label with this on from a label maker), Mummy-Pig, Mother (I know right!!!) and more often that I can count “Muuuum” which is usually followed by the following sentences –

“…….can I have…..”

“…..where is the…”

“…is dinner ready?”

“….tell him!” (Directed at small sibling who is usually causing ‘trouble’ 😉 )

I’m a picture visual on the daily board we have in the kitchen. I was a Makaton sign for a while. I’m a label that she made (that still sticks to my laptop). My name is shouted in both love and anger. My name is whinged and whined at when she doesn’t get her way. My name is mumbled through tears when she’s feeling unwell. On the odd occasion, my name is sworn at and lashed out at in frustration. Once she announced “Mother!” when her Wii U game didn’t load properly.

Whatever the name she uses and whatever the context or situation she puts it in, it’s who I am and I love it. I love her. And if you catch her relaxed and at the right moment and you ask her who I am, she will simply tell you that I am “Eliza’s mummy” with a huge grin.

IMG_3379IMG_3380IMG_3382

 

This was written for the weekly topic in ‘Finish the Sentence Friday’ hosted by Finding Ninee and themeaningofme

 

 

She just keeps blooming

8gtyihujl

 

This time 8 years ago I sat in a hospital bed waiting for Eliza to make her entrance in to the world. She was almost a week overdue and I had been taken in a day earlier to be induced. I sat there wondering what she would be like and imagining the things we would do together. I was also terrified and in that ‘first time mum’ moment. I sat panicking if I would be a good enough mum and worried about all the decisions I would be making in the future around , for and with her. I tried to sleep thinking of all those firsts we would have – first word, first tooth, first school….  but having already been in labour a fair few hours I was exhausted  but unable to rest because of all the monitoring and Eliza had decided being in the ‘back to back’ position was how she wanted to arrive which made the labour a lot harder for her and a heck of a lot more painful for me. Eventually Eliza was born early the next morning. I remember staring at this beautiful little bundle and thinking “It’s OK Princess, whatever happens we got this” and feeling all would be wonderful and amazing.

Less than 18 months later I found myself fighting my first battle, a battle to be heard because everyone was brushing me off and saying I was overreacting when I stated my concerns that Eliza was not progressing well in certain areas. So many people telling me “She’s just a late bloomer”, “She’ll crawl soon enough” and “It’s just a speech delay”. Nobody seemed to listen when I said she had LOST speech, that we had actually had speech and it was like a switch had been flicked and it had been erased. Nobody seemed to care that Eliza didn’t even try to stand let alone attempt to walk and her crawling was done with much struggling. I was made to feel like a rubbish parent, one that overreacts and I was shown the door by the GP and various others. As Eliza approached her second birthday we should have been offered a ‘2yr check’ to discuss how she was progressing, any concerns etc (It’s offered to all children but these days done around 18 months old instead) but lack of Health Visitors at that time meant we simply got a letter saying “If you have any concerns, call us”. So I did. I called and was given the same old speel about allowing her to develop at her pace, each child is different blah blah blah. I knew all this of course but I also knew there was more to what I was seeing in Eliza so I shouted. I shouted at the lady on the end of the phone and told her “You need to LISTEN to what I am saying please!”. So after hearing the desperation in my voice she asked me to tell her my concerns. I told her the speech had started but then gone, that Eliza showed no interest in wanting to walk, that she played alongside kids but never ‘with’ them. That she did not communicate a single need, barely cried and was always frustrated. That Eliza could not hold a spoon or coordinate her hand to mouth at all and struggled with fine motor skills. That we seemed to have the most epic tantrums in the world over the smallest thing (which in later months I learnt about meltdowns and why the smallest thing would trigger them). We were called in for an appointment the same week.

Eliza was diagnosed at 3 years old as Autistic Spectrum Disorder with moderate-severe learning difficulties. It was a day of relief for me. I know that sounds odd to some. To know that I wasn’t the crazy parent I had been made to feel I was because there on this piece of paper was a reason behind my concerns and Eliza’s struggles. All the fighting to be heard had worked. All the waiting for appointments and then attending what felt like hundreds of appointments had got us to this point. The last five years have gone so fast. Teaching Eliza to use PECS (Picture Exchange Communication System) so she could communicate was hard work. She spent half her time throwing the PECS folder at the speech therapists head and the other half trying to eat the pictures! Eventually she realised this little book could achieve great things (well to Eliza it was mainly about getting food and going outside, her main priorities in life). We also learnt Makaton signing which she was really good at (to the point I often had to go google what she had just signed to me because she was so much better at it than I was). Around the age of 4 the spoken words started to return. The next couple of years her speech slowly improved and it soon became clear she could read extremely well but we just hadn’t been aware of it, she’d not been able to tell us till then. Eliza always used small sentences, usually 2-3 words at most to communicate until one day at School she decided to throw her opinion and advice out there. A hula hoop had been thrown a little high and had landed on the roof at school. Out of nowhere Eliza stated “You need a broom and a chair to get the hoop off the roof” (or similar words) and carried on about her business whilst her teachers, speech therapist and later on myself stood open mouthed at this speech that was also spoken in context. Needless to say we changed her speech therapy goals lol

So now, here I sit writing this and wondering where the last 8 years have gone. Our journey may have different twists and turns that I wasn’t expecting but that’s OK. We’ve still had all the firsts I mentioned before but the first word she said, I cherish because after speech regressed it took years to hear her voice again. Eliza never stops trying, she doesn’t give up. She is thriving in School and learning all curriculum, she reads extremely well and she is making friends now she has learnt to develop her social skills and interactions. She fights the anxiety that often tries to take over her life and over the last 8 months has tried so many new things including trick or treating and carol singing. Eliza changes every day in to a beautiful, independent, feisty young girl with an inherited sarcastic sense of humour that she gets from me. The journey has been hard at times but it has also been amazing. She just keeps blooming.

Happy 8th birthday for tomorrow sweetheart. Our journey may be different to others but it’s OK Princess, whatever happens we got this xxxxxxx

uyghb

Working towards warm coffee

I love those days where I get to relax and switch off. Run myself a lovely bubble bath and lay there for ages, choose a book to read at leisure and ignore the phone if it rings. Randomly call a friend to see if they are free and want to meet for lunch or go shopping for shoes and enjoy life at a pace that I choose. Spontaneously jump in the car and go and visit family or even have a nap in the afternoons or take a yoga class. Ahhhh self-care, looking after me! These much needed moments to reboot my brain, process things and give my body a rest. It’s how I take care of myself……….. WAIT, that’s not quite right. Oooooh brain, what are you doing to me? Did you forget we have children, a house and endless appointments and a million and one things to do.

Let me give you an example of a typical day morning in my life… (even I didn’t realise how long my day was, this blog could become a series discussing 24hrs so let’s stick to morning)

Dragging myself and kids out  of bed early (ish), get them cleaned, dressed, fed and one ready for School remembering the packed lunch, reply to the fifty pieces of paper sent home by School the day before about photograph day, assembly, that I understand about the current bug going around, blah blah blah…… Throw in the bag PE kit, check I signed the reading book schedule, did I send money in for that School trip?, Should I send it again because I really can’t remember. Is today the day they go swimming? Has she got her shoes on? Answer the same question around fifty times “Can I have my kindle please” with the same reply “No because it is time for School, Kindle is for later when you get home” and listen to endless whining because that is the answer she really did not want so she starts with the “Oh but Mum pleeeeeeeeeeeeeeeeeeeease just for five minutes…..”

*School bus arrives and breath, that’s one out of the house for 6 hrs*

Chase the giggling toddler around to change his nappy because he thinks it’s hilarious to run around all stinky. Answer his constant request for cake/sweets/chocolate with a firm ‘NO’ for what feels like hours, build a Lego tower with him thirty five times to have him knock it down thirty five times because he likes that, tell him numerous times not to stick his fingers in certain places, please don’t feed the cats for the fifth time today, can we not throw crisps on the floor please and reply to the million times he asks “Wot dat mom?” as his thirst for knowledge grows. Phone School and remind them I will pick the girl up early for an appointment later because I forgot to write in her communication book about it and then ponder the forty two mile round trip later for one five minute appointment. Did I put the kettle on yet?

Put TV on with rubbish cartoons that will keep him busy for a few minutes so I can get the laundry started because if I don’t then soon we wont even fit in to the room with it. It’s out of control, I mean seriously how many clothes do four people need??? The washing machine must hate me, it never gets a rest ever. I sympathise, I know what it’s like constantly on the go, I feel it’s pain…… Oh, wait I’m now giving the machine love, understanding and feelings. *Sleep deprived mum here* Make a cup of coffee. Unload and reload the dishwasher, sweep the floor because my children’s mouths are clearly not big enough and more cereal ends up on the floor than in bellies. Plug in the kindle to charge or they will be hell to pay later. Stand on Lego and yell (not compulsory yet seems a daily part of my life) and it won’t be the only time it happens. That stuff gets everywhere, how did it even end up in the kitchen! Empty the bin but first taking out dolly, random shoes, the TV remote and my phone that the boy has put in with his attempts to be helpful and “I tidies up looksie” whilst praising him for lovely thoughts but explaining that we kind of wanna keep these items.

Find a toy that occupies the boy and offer him a snack so I can now go on the phone to chase up the missing appointment letter for his sister that they insist has been posted twice, call the pediatrician and get an appointment to discuss why the girl wants to eat paper, sponges, play doh……. they soon get the idea and an appointment will be posted (we’ll chase that in a few weeks of course). Call Doctors and order medications, call family back because they called like six weeks ago and probably assume I either moved or died, answer the phone to people trying to sell me insurances, new boilers or have I had an accident in the last however many months and would I like to claim something blah blah……. Answer the door for parcels and packages that are rarely mine but because they neighbours all work (and the postman knows I am always home) my stairs become a temporary post depot storing beautiful wrapped bundles of what feels like shoes, toys, car parts and the occasional mysteriously shaped package that takes up far too much of my mind as I wonder what it is. Down that cup of coffee I made two hours ago. Who cares if it is cold, it’s caffeine baby!! Chase boy around again having spent twenty minutes asking him “Where are your shoes?” and him answering “ummmmmmm” and throwing his arms in the air with a ‘who knows’ look about him before finding them in a plant pot because that’s where he decided they lived yesterday. I should get dressed, I’m not sure shopping whilst wearing ‘Harry Potter Rocks’ pyjamas are adequate or acceptable clothing for Aldi. Take the boy food shopping and secretly want to tie his arms together so he can stop grabbing stuff and putting it in the trolley because I really don’t need a pack of liver, a dog toy or aspirin…. actually leave the aspirin in the trolley as I am feeling the need for one pretty soon and it’s not even lunchtime.

You get my point right? As parents we lead such busy lives sometimes we don’t even get to think about self-care let alone act upon doing it. We forget. We actually forget to look after ourselves. In my house I am last to bath, last to dress, last to eat and I often sacrifice any free time I have to do stuff for or with the kids. I have 2 small people that rely on me to get things done so yeah I always put myself last. It’s overwhelming and exhausting just surviving each day. Self Care? I’m pretty sure I do it but the basic minimum level. A quick five minute bath on the evenings might be the first time I got to myself all day. So I set myself mini goals – longer bubble bath, read a few pages of a book, do some crafting or card making as I love it and find it relaxing. I try and give myself time to be me. It’s not always possible because life is so busy and I am OK with that. I manage. My kids are happy. There are clean clothes for them, food on the table and they are happy. We read stories together, have cuddles and it makes the busy days all worth it. My goal tomorrow is to drink warm coffee (even I am not stupid enough to say hot, never gonna happen as I have a busy day ahead so lets say warm #smallgoals).

Thank you for reading. This was part of a ‘Finish the sentence Friday’ post hosted by the fabulous www.findingninee.com/ 🙂

You can follow us on Facebook at http://www.facebook.com/LivingWithBloomingAutism/