Special needs parenting

The days are long, but the years are longer

9…  Ella is turning 9, and I almost can’t believe it.

I think about the phrase the day’s are long, but the years a short, and while I most certainly agree, it feels like the last 9 years have flown by! But when I really think about it… well…

One of my earliest memories of motherhood, it was the first few days home after Ella was born, before she was even diagnosed.
All she did was cry.  and cry..  and cry.
I remember everyone telling me how normal it was.  “Babies cry” everyone said…

2013-06-07T18-12-33_2I called my mum at like 4am, I hadn’t slept in days, like literally..  zero sleep.
Mum walked in at 4:05 and I was crying, Ella was fussing in my arms, I had milk pouring out of one breast (that was still exposed) literally dripping on her, and my shirt was wet through on the other side. I was almost delirious with lack of sleep. (turns out it was because Ella couldn’t suck so she cried because she was starving, no matter how full my breasts were)
I think about that moment, that one momont in time, and I can remember the person I was – it was a lifetime ago! only 9 years? unbelievable!

The things that Ella has acheived in 9 years, I was told not to expect in a lifetime!
Ella is an amazing 9 year old and I’m so damn proud of her!
Ella can walk, jump and swing herself on a swing better than any kid I know!
Ella eats a much bigger range of foods than she used to, sometimes I’m shocked by the thinks she likes!  And she can (although messily) feed herself
Ella’s singing is enough to make anyone smile, and she’s so loving and friendly.

This year has brought some… different challenges, lockdown, home-schooling and pre puberty.

Big changes this year as Ella has been receiving support from PALs, a service that helps her independently access the community.  Ella loves her support workers and It’s nice she gets to be a bit more independant around town.
We’ve also been working on cooking as a hobby, which Ella absolutely loves, with rum balls and pancakes being her favourite thing to cook. (And eat! 😉)
Her behaviour has been quite challenging – lots of defiance, self harm and meltdowns happening- but cognitively she’s hitting the terrible two’s, and physically she seems she’s on the cusp of pubertly, so thats all probably playing a part.

Unfortunately toileting and communication have taken a huge leap backwards this year.  Ella has zero interest in using  her communication device, and that stubborn streak thats so helpful when she wants to learn new things, is also the same stubborn streak that means you can’t force her to do anything! We’re considering trialing a new communication system – which is HUGE to change this late in the game – but we’ll see how we go!  And I’m trying to see an incontinance nurse as well as a gastroentourologist for her toileting issues.

Snapchat-1850066495Ella is an amazing big sister – and as Reece has surpassed her in some ways, she’s learning so much from him!  As much as this was something I was worried about – I thought it would really depress me.  It’s actually been quite heartwarming.  Seeing them together, playing in their own way makes my heart sing!  Reece has taken on his role beautifully, and hearing him explain games to her (“no, your turn, THEN my turn” or “just pretend Ella – not real”) to her.  Or hearing him tell her off for throwing, or playing in the sink makes me giggle! I quite often have to tell him “its OK reece, I got this, I’m the parent” 🙊 And hearing Ella laugh at his jokes brings happy tears to my eyes.

So that’s my 9 year old in a nutshell!

All in all this year has brought with it so much joy, and I’m so excited for what my no 9 year old will do!

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