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Friday, 28 March 2014

'The mother of all special needs melt downs'

Hello my friends, I hope you are all okay or at the very least okay(ish) - I'm sorry it's been so long since my last ramble.

I've wanted to write so badly for weeks now but as my concentration has barely stretched to making a cuppa (without wearing it) - it's just not been doable.

I've wanted to interact as I normally would over on Twitter but I hate tweeting negative (And my God I've been feeling negative o_O)

I have been in an incredibly dark place over the past few weeks, my usual 'hide behind a smile' depression' morphed around four weeks ago after a particularly bad 'mental health melt down' into - 'it's an effort to breath (let alone smile) depression' (there is a difference!)

I have noticed a switch in my mood over the past 2 or 3 days though, I'm wanting to connect again which is a good sign and compared to this time last week I'm emotionally more stable.

Physically I'm not good at all, my eating disorder has taking it's toll and alongside extreme fatigue there are one or two other issues that I need to see the GP about. Once I've talked myself into going that is - I find GP appointments extremely anxiety provoking (especially as the GP seems to take one look at my notes and decide *it's all in my head*!)

Well my friends, all of the above and a whole lot more is what I'd intended to write about today but as my head is now FULL of the 'Special needs melt down' I've just dragged myself and 'Littlie' through I could really do with throwing that your way instead.
I'll stick you on a promise for 'deep, dark, & despairing'.....Bet you can't wait for that! ;O)

For those of you who are new to my rambles - 'Littlie' (my youngest child) is disabled, she has 'Prader Willi Syndrome' (I'd love for you to look it up and learn more :o)) #Awareness
PWS is a genetic life long disability which (on top of a great long list of other physical & mental difficulties) frequently causes some incredibly challenging behaviour.

This evening we were playing shops - we play shops every evening (repetitive behaviour)
'Shops' goes *exactly* like this....real food items from the kitchen cupboards are arranged (quite specifically) on a surface in the living room - mummy (or daddy) shop using an imaginary shopping list (palm of hand) which must be checked periodically for error - 'Littlie' taps each item 3 times before scanning & passing over to be placed (the right way according to her) into a shopping bag. - Any item dropped or not packed *the right way* must be scanned again. o_O

As you can imagine shopping the 'Littlie' way takes some time so (as it was almost bedtime) it was a calm but definite "no" she received this evening when she decided that an imaginary shopping list DEFINITELY WOULDN'T DO on this occasion and her 'losing the will' parents would need to write down all items in the shop before (mind blowingly - long winded) game could commence.

'Littlie's reaction to our "no" was an 'I'm not happy about that - normal kinda paddy' which rapidly escalated (once she realised we weren't changing our minds) into the mother of all 'special needs melt downs'!
In hindsight it would have been quicker to just write the bloody list in the first place....

Of course we could give in once these initial paddy's start to look ugly (just in case) but that would just reinforce manipulative behaviour and besides - there is a very fine line (seconds on this occasion) between 'normal (we can handle this) kinda paddy' and 'special needs (Oh dear God why didn't we just give in) melt down'!

So what is a 'special needs melt down'?

Well I'm 'fairly' sure that if you're the parent of a special needs child you won't need me to describe 'special needs melt down' for you - but for those of you who have never witnessed one there is a huge difference between one of these bad boys and the 'Normal kinda paddy' that most parents are familiar with.

During 'normal kinda paddy' (tantrum) a child may scream, kick, throw themselves to the floor - hold their breath for what seems like forever in their attempt to make you believe they might 'actually die' if they don't get their own way but - they are actually in control. (despite doing a rather good job of pretending they're not!)
It's a power play, an attempt to manipulate - the child remains tuned into you, to your reaction to their behaviour and to their own safety.

In contrast - during a 'special needs melt down' the child loses ALL control - they are NOT aware of , nor do they care about your reaction to their behaviour and they do NOT consider their own safety or the safety of those around them. It's scary, it's exhausting (both for child and parent) and the child is potentially at risk throughout!

Tonight my 'Littlie' switched from controlled manipulation to 'special needs melt down' within seconds and as has been the case more often than I care to remember over the past few years she (along with pets and parents) were at risk.

The pet name 'Littlie' is deceiving - 'Littlie' is far from little!
She is eight (nearly nine) years old, average height for her age, and clinically obese (a symptom of PWS) - If she needs to be moved to a safer area of the house during one of these melt downs it's incredibly difficult and we need to be careful not to injure her or ourselves.

Dragging her from the kitchen this evening where she lay writhing, screaming* and slamming her legs against the hard tiled floor and through to the dinning room where carpet offers 'some' protection was no mean feat!

Of course if this had been a 'normal kinda paddy' I'd have probably let her kick it out - safe in the knowledge that her behaviour was for effect and that she was unlikely to exceed normal pain limitations.
However as 'Littlie' has an incredibly high pain threshold (another symptom of PWS) and as her last meltdown resulted in a fractured foot (only recently healed) there was no option but to move her.

*And the screaming - my God how do I even begin to describe the screaming. I feel I want to say 'bloodcurdling' because though she clearly wasn't being murdered (I can assure you :O) the neighbours and quite possibly the rest of the street could have been forgiven for thinking she was!

We got off lightly this evening - I received only one punch to the side of neck (more were thrown but suitably avoided) and she had hit the floor before too many reachable objects were thrown!

The melt down (as is usually the case) was explosive for around 10 minutes after which there was a coming down/coming round period of a further 5-10.

After the coming down period no more was said about the incident - there's a time and a place for discussing behaviour and directly after a 'Special needs melt down' is NOT it!

Once normal breathing had resumed (mine not hers) 'Littlie' (still swallowing sobs) was encouraged to help make her pack lunch (an activity she enjoys) by the time we had finished doing that she was chatting away as if nothing had happened.

Dog was released from the other room (where she'd been put for her own safety) guinea pig was checked for signs of  post 'scream' trauma and the normal (though later than usual) bedtime routine commenced.

If you could see her now you wouldn't believe a word of this ramble....Butter wouldn't melt!
She settled into bed beautifully with no further mention of shops, shopping lists or 'unreasonable parents' and is now sleeping like an angel. (my beautiful angel!)

I on the other hand am taking considerably longer to get over it! - Thank God for coffee, fags and blogger o_O ! ....and breath....

POSITIVE THOUGHT
PRAYER
Thank you Lord, for all the sunshiny moments and for carrying us through the storms. Amen

Thank you for allowing me to share

God bless you and all those you love

Kimmie x

          

20 comments :

  1. Sometimes there is nothing one can say but one can always listen.

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    1. Thanks Ropey, Knowing you're listening helps - writing is so much more cathartic if we know we're being heard :) x

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  2. So sorry to read that you're going through all of this, that really must be really hard to deal with. *Sprinkles some fairy dust around* Best wishes to you

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    1. Thanks Jack, Fairy dust might be just what the doctor ordered :) x

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  3. It can't be easy and I'm sorry you're going through a tough time, I'll say a little prayer for you I know it's not much but hope it brings small comfort xxx

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    1. Prayers always welcome and appreciated hun, Thanks for reading and taking the time to comment :) x

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  4. That sounds so draining for you both. Hope you and your daughter have had a better day today.

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  5. I held my breath reading this, I've been there so many times, and the first full scale meltdown here is burned into brain, and, like you, it takes me a lot longer to get over them, and I now need a little extra help too xx

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    1. It's hard isn't it, hubs and I seem to be walking on eggshells an awful lot at the moment, often we are able to defuse before she hits the point of no return but she's frequently bubbling, (ready to blow) and that in it's self is stressful o_O
      Thankfully her wonderfulness far outweighs her inability to maintain control at times :)
      Thank you for reading and taking the time to comment, I empathize with your difficult times and relate to your 'Oh my God I love this kid' moments (of which I'm sure there are many)

      God bless you and yours

      Kimmie x

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  6. Sweet Kimmie- sending you oodles of hugs- a willing ear to listen and a heart that is praying for strength for today and hope for tomorrow! Life is indeed- one challenge after another but God! I'm thankful He gets us through and will never leave us- May you know His love is fierce and wild for you and your family and He is unfolding a plan that we can't yet see the eternal scope and depth of. hugs :)

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    1. Cindy, Thank you so much for those words of support - I appreciate you stopping by and your message of hope. I too am thankful, I am blessed by my 'Littlie' far more than stressed.
      God blesses us with so many good moments and strength to get through the 'not so good' :)

      God bless you and yours Cindy

      Kimmie x

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  7. Wishing you relief and just remember how many people you're helping with all the sharing you do. You are loved and cared about, Kimmie! Love, Nana xx

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    1. Aw Nana, Thank you, Lovely encouraging words that I really needed to hear today, Bless you!

      I hope all is well with you and yours

      Kimmie x

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  8. Meltdown vs paddy. My son's ASD coordinator at school calls this the Red Mist. There is no reaching them at this point is there? x

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    1. No, once they have crossed the line, there is no reaching them, all we can do is try and stay calm ourselves (not always easy) and make sure they are as safe as possible.

      Thanks so much for taking the time to read/comment

      All the best to you and yours, Kimmie x

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  9. I'd never heard the term "paddy" and appreciated the translation - tantrums I am very familiar with. I think I read this once before as we were getting to know each other, but that time I hadn't had time to look up anything about Prader-Willi. This time I did. I am amazed at how well you describe in layperson's terms the essential challenges, and how well you convey the difficulties of making the right decision, moment by moment. The stress, the exhaustion, is clear, but so - very much - is the love. Thanks for enlightening me.

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    1. Sorry for (incredibly) late reply Paula, I must of missed you at the time.. It never occurred to me that some ppl might not understand the term Paddy, we've always called it such :)

      I'm so glad you looked up PWS, how lovely of you to do so - It's a complex (and as you say) challenging condition.. but you're quite right about the love..I couldn't love her more if I tried :)

      Take care hun, Kimmie x

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  10. Wow! I love your positivity at the end with the prayer! Thank you for sharing this and adding to the blog hop! You are doing an awesome job wit her and I can see why you were picked to be her mom! I will look up the disorder to learn more about it :)

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  11. Thanks April, and thanks for having me :)

    This is an old post..as many of my posts are mental health posts rather than parenting I had to go back a bit to stay on topic - great 'mummy' linky, Iv'e read a few of the other blogs and will check out more during the week :)

    Take care, Kimmie x

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