We almost made it. 2 weeks of school holidays, a week and a half in and it's been great! Joel has been working long hours, and looking after the 2 kids has been hard on my own. I can't leave them alone together because Ella is rough with Reece still, so trips to the toilet have been a family occasion, and showering is out of the question until Joel gets home because Ella freaks out when I shower, and there's been a few moments but all in all its been good! We've had beautiful weather, Ella has loved playing outside. I Even put together a playpen for Reece so I could weed the garden and hang out washing without worrying about Reece chasing the dog. Ella didn't complain about me putting sunscreen on her (which can sometimes be a challenge), or meltdown when it was time to come in. We went and fed the ducks near our house a couple of times, and even though Ella was scared of them, she took it like a champ and kept going back which is huge for her to overcome a fear like that! A few appointments as always but they went off without a hitch. I had a lovely visit from my grandma, who I don't get to see nearly often enough, and Ella was on her best behaviour. We had A couple of visits from the neighbour and her young son played with Ella, which went so well, Ella was so happy afterwards. And then today happened. Today it all came crashing down. We almost made it 2 weeks and I expected it, and I'm sure parents of 'typical' children have these days but I can't help but feel so disappointed. I'm worn out, deflated and just done. It was raining today, so I thought I'd let Ella run around in the rain, it was warm enough and I have let her before and she's always loved the experience! But Not today Complete and utter meltdown after less than 5 minutes because her clothes got wet, (I think) then she wouldn't get changed and the day went downhill from there. She bit herself so hard it left a huge welts on her arm. I had to keep her and Reece completely seperate all day because she just kept lashing out at him, trying to pinch, push, grab, hit. She's been violent and lashed out towards me, Ive been slapped, pinched, my hair ripped out while trying to calm her, or stop her from hurting herself. She's refused pretty much all food, all day. I've watched my usually well natured girl throw things, bang her head on things, self harm, throw herself on the ground and just be violent and destructive - All Fucking Day And that's it. No well written, long-winded thought out post. Just this. Word vomit, written on my phone while sitting on the toilet with the shower running. This is my life. Hopefully tomorrow is a better day, we're off to Wangaratta to meet a new physio. Now Ellas finally calmed down for a while with her iPad before bed, and I'm off to cry in the shower and wonder what the hell I could have done differently today. Ugh. We almost bloody made it.
When Ella was diagnosed with cri du chat, I was told She would never walk. This was a huge blow, but as I learnt more, I realised with physio it might be possible for Ella to be able to do something the 'experts' said she can't - walk
Most nights before bedtime, I try to do some kids yoga with Ella. It's a great way for her to unwind, and also great for her balance, which she still has a lot of trouble with. Sometimes she'll even do it herself, as Ive got the photo visuals laminated on her wall! I'm sharing this for 2 reasons, 1 - because it makes me look like a fantasic parent, and 2 - because I feel guilty that a couple of hours ago I lost my shit because Ella did not want to get dressed, which then caused a naked meltdown of epic proportions that lasted nearly an hour and ended with both of us in tears, proving I'm not, in fact, a fantastic parent, most of the time I'm pretty fucking mediocre. Just like yoga, It's all about balance... 🤷 cont...
Physical vs emotional tiredness. So, I have a secret - My 8 month old Doesn't Sleep, but nothing quite compares to the tiredness that comes with a special needs child. Here's my 2am ramblings about why.
7 years ago I was still sitting in hospital, with my tiny baby that was born 3 weeks earlier, with no answer, no hope and no idea. The drs had just started talking about genetic testing, I felt like a child, lost and alone.
I've often written and talked about the feeling of isolation, and being alone as a special needs parent. After last week's post focusing on that, I got asked by a few people "well Melanie, it's all very good to whine and moan about it, but how do we fix this!?" Well, after speaking to a few other special needs parents I've put together a simple list of what to do! We may not fix the world, but with enough shares me might make one trip to the park better for one kid. And that's good enough for me!
I promised the brutal truth, well strap in, because here it is. I never realized the isolation I would feel when Ella was diagnosed. How little I would suddenly have in common with my friends, with other parents. If you know someone or have a friend that's a special needs parent, this will give you an insight to how they may feel, if you're a special needs parent, you are not alone. Click here to find out more.
The afternoon I had to clean a bag of pooey clothes, and everything went wrong... A lighthearted look into toilet training a special needs child.
Here is all you need to know about Cri Du Chat, a rare genetic disability that most people have never heard of! Cri Du Chat awareness week is coming soon, once you read this, you'll know more about it than most of the professionals I've seen!