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 🙂

 

Overcoming assumptions, regression and being the girl she wants to be

I’ve mentioned in previous posts that Eliza was pretty much ‘written off’ by a pediatrician when she was 2-3 years old. They told us to “not expect much from her” and “She will never read, write, speak, have friends……” and basically decided that she would amount to nothing and shoved her aside. What happened next? We got a new paediatrician that actually saw her for the amazing, intelligent and beautiful child she was (and still is). This is just a little recap blog or a mini timeline if you like. To show that she has proven them wrong. I’ll share 3 photo’s with you and tell you what they are all about.

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Eliza, aged 2.5 years old

I love this photo of Eliza. She was two and a half years old, loving the sunshine in the garden and loving life. By this point she’d had a regression period and her speech had gone, her mobility seemed to reverse and she struggled with walking and her fine motor skills deteriorated fast. Eliza had weekly speech therapy and attended many appointments with speech therapists, pediatricians, doctors etc to try and discover what had caused her to lose her speech (eventually at age 3 she was diagnosed as ‘Autistic with moderate-severe learning difficulties’). It was at this age that the pediatrician told us nothing but negative stuff. She’ll never………. She won’t…….. She’s not going to……  and looked at me with sympathy as he shook his head and wrote his report. (As above we never saw him again, we got a new peadiatrician). At this lovely tiny age Eliza was starting to learn PECS (Picture Exchange Communication System) and Makaton signing so she could communicate her needs. One of her favourite activities was throwing the PECS folder at the speech therapist (who learnt to duck really fast). She learnt signs fast and at school she remembered things well. She loved books and would look at them for hours with a huge smile on her face. Eliza was a fun loving, feisty little diva and she loved Mickey Mouse, iPad’s and chocolate biscuits.

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This is Eliza in 2014, aged 5 years old.

We jump to this next pic of Eliza, aged 5 and holding a trophy she received at school for speech and communication!! That photo was taken exactly 4 years ago today. Her Makaton skills were fair, her PECS skills pretty good (and yes the PECS folder got thrown many a time, even out of the car window once!). But she also had speech. SHE COULD TALK AGAIN. That pediatrician was so wrong to say she’d never speak although he probably filled both Eliza and myself with extra determination to prove him wrong. And she did, she refused to be brushed aside and ignore all these negative assumptions. Eliza’s speech started to return not long after she turned 4 and it just kept coming.  Her love of books was growing and she’d come home from School with new reading books each week. It was the most pleasant and wonderful surprise finding out how well she could read. Once her speech returned and kept improving it soon became very clear that she had a great memory and was very academic. She knew shape names that even I didn’t know, she knew about the moon and the planets and she’d recite stories back to me that she’d read at school. So there she is at age 5 and raising her communication trophy as high as her little arms could go with a look of pride and determination. Eliza was still a fun loving, feisty little diva and she still loved Mickey Mouse, iPad’s and chocolate biscuits.

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Eliza age 9

This last photo was taken a few weeks ago. A nine year old Eliza who speaks really well despite her speech and processing delay, has a brilliant sense of humour with a slight sarcastic edge to it (no idea where she gets that from……….). Eliza reads at age 10-11 years and loves books, her latest favourites being ‘Captain Underpants’ and also ‘Diary of a Wimpy Kid’. School informed me that Eliza can even read music! She’s learnt to play a brass instrument as well as piano, she’s taken part in a table cricket competition and is quite an academically able child (despite what they said 6 years ago, they were so wrong!). She never stops trying to write, her fine motor skills need lots of work but she always tries hard. She has friends and loves to play.  She still really likes shapes and patterns and has a real interest in Science and Religion (she loves reading her children’s Bible). It’s apparent that Eliza still has an interest in space as she recently woke me up at 3am in the morning to ask me if it was possible to cry on the moon! (Thank You Google for your help that morning). Eliza appears in a book that was put together by Chris Bonnello who runs Autistic Not Weird where she is one of 150 children that tell the world what she loves most about life. This year she has also become a young ambassador (with a little blogging help from me) for a clothing company that promotes Autism Awareness and Acceptance Just Ausome (She’s now on their website). And yes Eliza still loves Mickey Mouse, iPad’s and chocolate biscuits and is also still a fun loving and feisty not so little diva (she just keeps getting taller!).

Some things, like the loving chocolate biscuits, never change. But that doesn’t mean that nothing else will ever change too. Children grow and develop at different paces, there is no crystal ball to predict their futures and they certainly shouldn’t be written off at such a young age. I’m fairly certain Eliza will keep proving them wrong. I’m even more certain that she’ll have as much fun in life as she can and she’ll be the person she wants to be, not the person they assumed and decided she’d be back when she was younger.