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 🙂

 

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It’s all about Eliza

I’m a member of a lovely group that blogs weekly to various sentence prompts and ideas and I often neglect them as life gets so busy. This week I have a little time so I can join in the week’s topic. I’m supposed to be writing a list of “10 things most people don’t know about me” but I thought I’d mix it up a little and do 10 things about Eliza instead. Here they are, in no particular order…..

1. I LOVE READING…. Sadly some people assume that because I am autistic, I can’t do certain things and are often surprised when they see me reading. I read anything and I mean anything, I have read Mum’s bank statements, comic books and even a children’s Bible. My favourite books are ‘Captain Underpants’ and ‘Horrid Henry’.  I am 9 years old now and last year School told my Mummy that my reading level is around age 11 years.

2. I HAVE AN AMAZING BOND WITH MY BROTHER…. Noah is 4 and we have a lovely relationship. We are very close and we also fall out all the time like siblings often do. We love playing in the paddling pool and having water fights. I like reading stories to Noah and he likes helping me to put my shoes on which I find hard sometimes as my fine motor skills are poor. Even if we fall out, we always make up and have a hug.

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Eliza & Noah, early 2018 and looking like they are mid way through a song!

3. I LOVE UNICORNS AND MERMAIDS…. Although when I once forgot the word unicorn and I called it a ‘horny horse’ it made Mummy laugh for ages! My sensory needs mean I prefer certain clothing like loose T-Shirts, soft leggings etc. Because of the way I dress people often think I am a quite a tomboy. I am to a certain degree but I’m also quite a girly girl. My room has sequin cushions, pink walls, unicorn pictures and lots of cuddly toys but it also has my Wii U with games like Lego Batman, Minecraft, Super Mario Maker. I’m just me and this is the stuff I like.

4. I AM QUITE GOOD AT SPORTS…. I am rather good at basketball and score many hoops. I can run pretty well and fast and last year took place in the relay race at School.  Mummy laughs when she tells me about my first sports day when I was 3 years old. The gun went off and I ran in the opposite direction to everyone else, followed by a couple of teachers in hot pursuit. Recently I tried football (soccer in USA) but I wasn’t too keen. I found I enjoy cricket and was asked to join the Table Cricket Team at School. This week I took part in a Table Cricket Final on behalf of my School and we came second.

5. I DON’T LET EVERYONE IN TO MY WORLD….. I just can’t, it’s too much. I love people but I find it hard to connect with people sometimes. I’m not being rude, it’s just that I lack confidence or struggle to find stuff to talk about. Anxiety plays a huge part in this but if people are patient and meet me at my level as such, it can be pretty awesome. My School report last year stated how much my classmates looked up to me and some saw me as a role model.  I really like having friends and I have some special people in my life. Most of my friends are autistic children or adults. I seem to find myself more comfortable with others that are like me regardless of where they ‘sit’ on the Spectrum.

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This is Chris from the Facebook page and Website named ‘Autistic Not Weird’. He is autistic also and when we are not having lightsaber fights or eating spicy chips, it seems we swap heads like in this photo…..

6. I WEAR EAR DEFENDERS TO BED…. I find it really hard to switch off at night and I have such amazing hearing that I need them to help me close off my mind and settle for sleep. They are nice padded ones so they don’t hurt my ears. They really help me though. Sometimes I need reminding that they can make me forget how loud I am talking because I can’t hear my own voice properly when they are on my ears…. or so Mummy tells me at 3am when I wake her and I’m ‘talking’ to her about Christmas Songs I love!

7. I LOVE FRUIT… Strawberries, bananas and blueberries are my favourite. Sometimes Mummy has to hide the fruit so I don’t eat too much and get a sore tummy. Strawberries taste even better under a mountain of squirty cream….. just saying.

8. I HAVE A HUGE FAMILY….. I already mentioned Noah. I really love my Mummy and Daddy. I have 2 sets of grandparents and lots of Uncles and Aunties, cousins….  I come from a very large family. Mummy is one of seven children and Daddy is one of four. I’m not sure I could count every family member, there are so many. Sometimes we talk to my Uncle and Aunty in Australia via the laptop. They send me things with my name on like cushion covers or door plaques because my name is quite popular there.

9. I KNOW STUFF ABOUT HARRY POTTER… My mummy talks about it so much that when my speech started to come back when I was 4, I was saying the alphabet one day like ‘A is for Apple, B is for Ball….’ and when I got to Q I announced that Q is for Quidditch! Mummy had to pull the car over and wipe a tear of pride from her eye. Some of her favourite shops sell lots of Harry Potter themed clothing so……..

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#QuidditchMuggleFromAzkaban

10. I LOVE GOING TO THE CINEMA AND THEATRE…. It’s taken me a long time to gain control over my anxiety. It’s taken a lot of love, patience, support and understanding from everyone around me. I am grateful I was never overly forced to do things, I was nudged gently and supported to try things when I was ready. Because of this my confidence grew and I learnt to take control of some feelings that were holding me back. Last year I went to the theatre for the first time in years and loved it. I’ve been a couple of times since. On New Years Day I announced out of the blue that I wanted to go to the cinema to see Lego Ninjago…. I’d not been in a cinema for over 4 years so Mummy took me and I loved it. I learnt that I can do these things and they are not scary. Mummy learnt something too…. never to ask me “Do you want anything” because suddenly she found herself carrying pringles crisps, haribo sweets, a rainbow mixed slushie and a hot dog as my film snacks!!

 

Thank You for reading. I’ve written this as if Eliza was writing it. She has sat here with me and I read it out to her and she’s laughed at some stuff and told me to add certain bits so she’s been involved well.

This was a listicle prompt from ‘Finish the sentence Friday’ group hosted by the fabulous Finding Ninee and Sporadically Yours

For the Love of Horses

When I left School many years ago, the only thing I had an interest in was horses. So I went to college and got some qualifications and even competed in some small show jumping and cross-country events. At the stables I worked at, we ran summer clubs and gymkhana’s. My days there were some of the happiest of my life. Except the falling off horses, being kicked by horses, being trodden on by horses and horse flies…. Other than that, pretty awesome days. As much as I loved all the horses in my care, two stole my heart. Starlight and Sundance, although we had nicknames for them. I still have a drawing of them both that was given to me as a gift for my birthday when I worked at the stables (I think it was for my 18th birthday).

Here, have some pictures of me between the ages of 17-20 ish years old with both of them.

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Sundance, also known as ‘Fatty’ because he never stopped eating, was bay colour and a gentle yet stubborn git! If you wanted to head to the right, it was a given that he wanted to go left…. towards the lovely grass he had his eyes on. Always getting holes in his rugs, I spent many a night at home hand stitching his rugs. He was popular with everyone, his name often requested for hacks out because he was pretty safe with all scenarios regarding traffic etc. He was the cute boy that you just had to love.

Starlight, also known as ‘Scar’ or ‘Scar bag’ because of the scars on her face but she was so beautiful. She was a chestnut mare with a serious temper. Nobody was allowed near her tail, she was a kicker. She once let me plait the top of her tail for a competition but made it clear when she’d had enough by trying to eat my face. At competitions she had to wear a red ribbon in her tail which basically alerted others to the dangers of her flying back feet. She was a bitey, kicky, feisty, moody, stubborn, aggressive mare… and I loved her dearly. Point her at a show jumping fence and she was happy. We won a fair few rosettes for clear rounds between us. I have fond memories of us jumping, hacking out (although freaking at the sight of a tractor and trying to chuck me in a ditch was not as pleasant memory wise) and I loved just watching her grumpy attitude as she strutted across the field. One day I went to work and she’d gone. The vet had been called and she was ‘put to sleep’ because of twisted gut and she was suffering. I cried for days. I miss her every day, even now.

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Eliza will be 9 soon and has struggled with anxiety a fair few years now. We use essential oils which help loads. We have various strategies that we use if we see her anxiety rising. These days she is pretty good at saying how she feels so she can sometimes give a heads up that anxiety has popped by. One of the best things she ever did was attend ‘Horse Therapy’ (or Equine Therapy). At the start she hated it, well hated the thought of it (anxiety) and would scream as soon as she saw the turning to the stables (anxiety) and we’d spend the first 20-30 minutes of the session in the car for safety whilst she screamed, kicked the car seat and yelled (yep, anxiety). Eventually she would get out and tell me she’s only staying for five minutes. I agreed as it was confidence for her and her compromise. Every time those five minutes ended up as at least an hour if not longer. She’d help groom the ponies, feed them and learn about how to look after them. The minute she sat on a pony to ride she was totally relaxed and anxiety gone. Horses are said to be amazing help for those with autism and special needs and it certainly worked for Eliza. We went for weekly sessions for a year unless the weather was too bad. It gave her confidence, pushed her boundaries, improved her speech along with the confidence and lowering anxiety. She also made friends there. After a year, she didn’t want to go anymore and to be fair I think she’d got what she needed from it. The amazing power of horses.

(I’ll just add here that even though Eliza’s anxiety caused some upset as described above, I know her extremely well and I trusted my instinct and her fighting spirit that she could do it and it was worth persevering. Eliza often needs ‘anxiety squashing time’ and she actually really enjoyed the horses company and she still talks fondly of them now. If at any time it seemed damaging to her, I would have stopped the class).

Here she is (2015-2016)

Eliza Horses

This has been a post for ‘Photo Share Friday’ (although mine turned out to be an essay too lol). Hosted this week by Sporadically Yours and Finding Ninee

What am I afraid of?

What are you afraid of? Spiders? Mice? Flying?. Everyone has fears don’t they? (even if they don’t admit them or want to talk about them). I’m not a fan of mice or spiders but I can catch and remove them from the house without having a heart attack or passing out. Flying, I’m fine with although the popping of ears really annoys me and I’m not keen on the take off as the plane surges forward. I am afraid of many things, some deep and emotional things and other stuff that is completely stupid and pointless but I feel that way anyway.

Do you have children? I do. Eliza is 9 soon and Noah is 4. I am a single parent (and main carer to Eliza who is autistic with learning difficulties). I bet all parents have the same fear as I do – dying. For me it’s not so much about how I’ll die or when, it’s what I’ll leave behind and that includes those two beautiful little humans that rely on me every day. I’m terrified of dying when they are young. I want to be old and have seen them settle in life with their own families or a job they love. No parent should ever live longer than their child, a thought I can’t bear to ponder on as it just adds to my anxiety about the whole situation. As awful as it is to think about it, I often do. It’s like living in fear yet living with a need to make sure you do as much as possible now for the future. I worry for both of them but with extra worry for Eliza. Nobody knows what the future holds but she’ll ever live a fully independent life, she’s always going to need supervision and support. I worry about how she’d be without me so I spend a lot of time teaching her life skills and talking her through situations and scenarios and I often push her comfort zones. I once saw a picture on another Facebook page and I’ve never forgotten it. It was from a lovely page I follow called Forehead kisses – Our Awesome Autism page and this was the picture..

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I found it so emotional to read. But that’s what we do for our children, teach them how to live independently because one day, we won’t be here for them. So yeah, I fear dying but not for the actual dying part.

**You should check out that beautiful page, it’s been wonderful watching Brodie growing up (who now has left school and has his own business)**

I’m afraid of driving yet I drive most days although mainly short distances. I’ve thrown up on the driveway before at just the thought of getting in the car! My legs shake, I start to cough (you know that kind of annoying anxiety induced back if throat cough) and I have to sometimes talk myself in to driving (I’m actually fine once in the car). I was in the passenger seat of a car once when the driver was going too fast on a country lane, skidded and we ended up in a ditch. I had an accident where I was the driver years ago when heavily pregnant with Eliza. My car was a total write off and the road I was on was dark with nothing in walking distance. It was raining heavily and thundering. I stood in the dark in the rain with my almost 7 month baby bump, waiting to be rescued and not a single driver stopped to help. I’ve also been a passenger that felt nothing but helpless fear when my husband had a massive panic attack in the car and started shaking and shut his eyes whilst he was driving. I had to calm him fast and help him pull in to a lay by. A very small baby Eliza was fast asleep in the back of the car. I then had to drive us home, my first time ever on a motorway and only 7 months after my own accident. I HATE DRIVING!!! But I need to. The kids have appointments, Eliza’s school in 35 mins away, shopping etc. I also do it because I don’t want to let fear and anxiety win. So I push my own comfort zones.

I’m scared of sharks! Like forgetting I can breathe, sweaty palms, legs buckling under me scared. Doesn’t matter which type, they are all scary! Yes, go ahead and laugh. It’s a totally ridiculous fear to have. I live in the UK, pretty central/midlands area with absolutely NO possibility of meeting a shark unless I visit the sea-life centers. But nonetheless, they terrify me. I’ve been in the sea-life places before and walked through those glass tunnels where sharks lay over the top or swim by. A giggling and happy Eliza or Noah have a blast. They look in amazement at these things. Me…. eyes straight ahead at the exit and do not engage eye contact with the sharks, I repeat do not engage eye contact with the sharks…… FEAR!! The stupidest fear I have but it’s there. I only agreed to go swimming in the ocean in Australia after I asked my brother about 30,000 times if he was pretty sure I’d not meet any sharks (and that if I did, he’d wrestle them until they spat me out if they ate me). I’ve had many nightmares involving sharks attacking me, eating me, swimming around me in circles and even being trapped in a cage with a shark…… STUPID FEAR!!

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**Avoids eye contact with shark picture**

Other than totally waffling my way through this blog, I find it interesting that the three things I chose to share are so different and have come about because of life and situations (other than the sharks, NO IDEA where that came from). That emotional deep-rooted fear about dying too soon, the circumstance induced fear because of cars and accidents and the just stupid irrational ‘did God throw that in for a laugh’ fear.

This has been a Finish the Sentence Friday post. This week’s topic is “I’m afraid of/that…” hosted by Finding Ninee by Kristi Rieger Campbell and Sporadically Yours

 

 

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

 

 

 

 

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.

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

 

 

She just keeps blooming

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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