Ella, Special needs parenting

The Ugly Truth

Ella choked the other day…

Choking isn’t too unusual in this house, or I should say gagging.  She gaggs on things almost daily.  food, drink, her fingers, toys.  The real serious choking happens more often than I’d like too.  She’s choked to the point of unconsciousness a handful of times and I remember each and every one vivedly.  when she was about a year old it was a bonjella lid.  I was in the toilet and I came out to her making a really unusual sound.  I dug it out with my fingers, she was breathing again and I took her to the hospital afterwards it was the scariest moment in my life.  I took a first aide course after that. 
Another time it was a piece of penne pasta when she was 2.  I was watching her when it happened but it just seemed to take forever to dislodge.  She went white and floppy.
The worst time was a grape. she was 7 at the time, I was doing the dishes and she had got it out of the fridge herself.   I finished doing the dishes and she was just standing behind me with the oddest look on her face.  I asked her what was wrong, she didn’t answer and I swear I could see the colour in her face turn before my eyes, she went from white to grey to blue in the time I realised she wasn’t breathing.  I bent her over and gave her some good HARD whacks on the back, like I was shown in the first aid cause. 
Nothing happened, her eyes were open but rolled back so you could only see the whites.  Then she collapsed like a sack of potatoes.  The seconds seems like they were in slow motion and I hauled her up and did the upward abdominal thrusts I was shown all those years ago, thinking about the next step, an ambulance, and out popped a grape, followed by vomit.  I promptly collapsed with Ella, in tears, in the vomit, shaking, heart thumping as Ella got up…  and tried to eat the grape 🤦‍♀️

This most recent one wasn’t as scary, about a 4 on the 1-10 choking scale, I was doing a home workout on youtube with Ella on the bean bag chair behind me, I hear her gagging and turned to check, sure enough there was something stuck.  2 hard whacks on the back and out came a 50 cent coin, again, followed by vomit.  I don’t even know where she would have got it! I’m so careful about choking hazards in the house. But we’d sold our couch that day and it must have been underneath, or fallen out of the cushions.

So why am I telling you all this?  well, 2 reasons..

In a special needs parents group I’m in someone recently posted something, asking for help, and one of the comments told her to ‘supervise’ her child more. 
Really??  ALL of the above situations happened while I was either LOOKING DIRECTLY AT HER  or at the very least in the room.  and in any event, it is IMPOSSIBLE for anyone to supervise 24 fucking 7.  It’s draining even trying.  but parents need to use the toilet, eat, hell even take 5 minutes in the next room to fucking BREATH. 
Every parent knows how quick a kid can get into trouble when you’re not looking, you see pictures of small children with the nappy rash cream smeared everywhere or the textas on the walls.  People laugh and say “well, that’s kids!”
Well, just imagine instead of just the first few years of dealing with that, and supervising closely, its forever.  Teenagers, even adults, and instead of the nappy rash cream, its shit smeared walls, or smashed Ipads, or holes punched in walls.

Which brings me to the second reason I felt the need to write today.
Special needs parents can get burnt the fuck out.  It’s not just the choking, it’s the expectation that we should be watching our kids every second of every day.  Living constantly in a state of anxiety for the next ‘thing’ to go wrong.  To set off a meltdown.

I read a story recently, a fiction, about a mother of a disabled, non verbal, extremely challenging kid.

Quote from when she got the diagnosis
“She had all her worst fear confirmed and, at the same time, lost the child she thought she was going to raise”
Her child had violent outbursts and she laments about broken wrists, cuts, bruises, bite marks. 
quote “you can leave an abusive husband, but what about an abusive child? one that doesn’t understand she’s hurting you”

I felt for her, I felt every word she said. I felt it.  The crushing loneliness, the feeling that no one understood, hiding bruises and bite marks from the latest meltdown.  The isolation, not being able to go the the park and just sit and watch like other mothers do.  Being constantly on edge, trying to do everything ‘right’.  Feeling judged whenever you leave the house. 
“can’t she control that child?!” people whisper to eachother.  The looks you get.
Tiny things building up and getting on her nerves – like still brushing the teeth of an 14 year old, or dressing her, and feeding her, when the expectation is only a few years.  The weight on your shoulders when you realise you may be doing these things forever.
Most of all her fear of the future was debilitating.   Who is going to look after my child when I’m gone.  Who is going to understand how to handle these outbursts. Who is going to love her.
In the end she did the unspeakable – the unthinkable. 
Obviously this was an extreme case written for fiction, but still, I put the book down and cried my eyes out. 
What an utterly horrible and heart-breaking story to read.
There are real life people that live it every day and I feel for every single one of them.

It’s not that there’s zero support, but even that support quite often comes with judgment.  can’t you handle your own child?!  what are you doing wrong that you get hit, or bitten, or worse?  Aren’t you supervising??   No one talks about the dark side.  The ugly truth that’s hidden beneath the surface.  The woman in the story just couldn’t get any support. Whenever she tried, she was judged.  Being judged is a feeling I know all to well.  I’m extremely lucky I have found the support of a very select few that I know wont judge me –  I have a partner that comes home every night and if its been a rough day I can unload on him, or lock myself in the bathroom to decompress.   So many people aren’t that lucky.

There are days where it feels like everything is taken from you and you still have to give more. 

I share the happy parts on my facebook page. But I skim over some of the worst bits.
I shared a happy new years eve post about how excited I am, all we have achieved and for the coming year, all we have planned.
What I didn’t share is that I was ringing in the new year by cleaning up vomit from Ella’s bed, her floor, her clothes, washing all her bedding yet again, cleaning her up and getting her back off to sleep.  
You see, we were outside most of the day, snacking and over excited.  Ella is a vomity kid.  Over excitement during the day, quite often leads to a vomit at night.  Still, at 9 years old I check on her multiple times throughout the night – if she vomits she wont get up and tell me – she sleeps in it.  Or her nappy will leak. or she’d be asleep on the floor and banging her head.
So I check.  Just like you would a newborn.  Except I’ve been doing it for 9 years.  I don’t even plan it, my body just wakes me up during the night and off I trundle to her room.

I shared a cute photo of Ella and Reece but I didn’t share that quite often they fight too.  Reece gets frustrated that Ella doesn’t play the way he wants her to play, and He’ll lash out at her.  Or that She thinks its funny when he jumps on her – hard, Or that she’ll bite him, and He’ll bite her back, often hard enough so they both end up with bruises. 
They love eachother to peices don’t get me wrong.  But Reece is still a typical toddler and in many ways, so is Ella.  I just can’t leave them unsupervised for long because one of them will get hurt.

Maybe all these feelings are magnified by the fact its school holidays. 
Every single meal is a mess.  breakfast, morning snack, lunch, afternoon snack, dinner.  ALL need a clean up of the bench, floor, chair, change of clothes or another bib to wash.  There’s whole bowls of cereal tipped onto the floor regularly, or food thrown – if I’m not supervising enough.  Can you imagine how draining that can be?  There’s no just grab a snack and eat it on the couch with a movie – every meal is a production.  Not to mention If she eats too fast, it results in a vomit.  

Ella’s attention span is quite similar to that of a toddler, all day she flits from one thing to another, getting frustrated when she’s bored, but so hard to Keep entertained.  I’ll set up activities, we’ll spend 5 minutes putting pegs on cups, another 5 with playdoh, another 5 painting, another 5 practicing her name, another 5 sorting colours, another 5 at a tea party.  And If I’m not actively involved in an activity she just wanders from room to room, opening draws or cupboards and getting random stuff out.  Trying to go in the garage or out the back or out the front door. 
I’ve been laughed at for not even showering when I’m home alone with the kids – but just imagine.  what if she found that 50 cent coin while I was in the shower?  
What if Ella managed to open the front door and just wonder off?  I need to be watching, all. the. time.

Don’t get me wrong, most days it doesn’t even bother me!  Just clean up, make jokes, plan super cool games and activities, the kids get along, Ella has a good day and I feel like goddamn super mum. 

But other days… It’s like groundhog day – especially during school holidays.
I count the minutes until Joel gets home, My heart sinks and the thought of another messy meal.  My brain is fried trying to think of more things to keep her entertained, and happy.  the kids fight, or play too rough, I get bruises or bite marks from Ella throwing something at me, or lashing out.
I’m not the only one, I know I’m not – and yet, no one talks about it! At least not publically.  We’ll talk about it with others in the same situation.  Because there’s always some judgy mc judgeface out there that thinks She knows more about our lives than we do, and if we just did better It wouldn’t be so hard.  Well fuck that.  I’m talking about it anyway.  Because people need to know they’re not alone.

I need to know I’m not alone.

2 thoughts on “The Ugly Truth”

  1. I am fortunate in that there is a school holiday program for kids with additional needs fairly close to us that my child loves – I’m actually not sure who gets more out of it, me or him. Lockdown with no school was exhausting – we all needed a break from each other, and it wasn’t possible.
    Seriously if there just one thing I would like my child to learn this year it’s toileting – after 9 years I really would like to get away from nappies. If there was no hope of that – if I knew it would never be possible – it’d probably stress me less, but the so near but not there is driving me insane.

    Like

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