Monday, 8 June 2009


One of the very best things about Little Fish's Little Wheelchair

is that it enables her to reach the floor. She drops something, she picks it up. Doesn't matter whether it's accidental or deliberate; if something she needs is on the floor then she can fetch it for herself just like any other child her age .

And now Little Fish is in her Larger Chair

and her fingers finish a good 18" off the floor. And she's good and cross about much of life. And is swiping everything off the tables, out of drawers and cupboards and off work surfaces. Frustration at being immobile and 75 puzzle pieces are scattered across the floor. Fury if I spend time with Mog, and three plates, a jug of gravy, and a handful of dirty cutlery is flung to the far corners of the room. Anger at her inability to turn corners without help, and the DVD player goes flying. Hair bands are pulled out (hers and Mog's), cat food is shaken out, toys are shattered and drinks are puddled.

And I'm at a loss. I get that she's cross, bored, out of sorts, unhappy. That doesn't give her a free pass though. She's fine (mostly!) when we have company, delightful when we go other places. This tells me she has this under control; it's a choice not a compulsion. So normally I'd pass her a cloth to mop with or a bag to sort with. I can't even put her down on the floor to pick up the pieces; on her back she's immobile and on her front she's too mobile for this stage of healing. All I can do at the moment (except save on lighting bills by becoming incandescent with fury myself) is ignore her totally and obviously whilst I clean things up myself. "Throw it and you lose it" is all very well but now she's banging her head against her wheelchair, hitting herself with a fork (having already flung the spaghetti), and absolutely beside herself.

So I pick her up and hold her to me, we snuggle together as she grinds her bony head into my collarbone and storms out her fury. And then she screams until she is sick, and then she wants cuddles, and then two minutes later it all starts again, and all because I have stood up for two minutes to do something other than be the sole focus of her attention.

I get loud; she gets louder.
I get quiet, she stays loud.
I ignore her, she escalates; unstrapping herself and trying to throw herself out of her wheelchair or else undoing the straps of her brace and trying to remove it.
I hold her, she bruises me.
I stay calm, she weeps buckets.
I get angry, she weeps buckets.

She wants the Wahooligan's toys, she wants to throw the Wahooligan's toys. She wants my phone, she wants to throw my phone. She wants food, she wants to throw it and crumble it and smear it across her face and up her arms. She wants paints and pens and pencils, she covers her arms and her face and her clothing and ignores the paper. She wants to watch DVDs, she wants to bend and snap the DVDs.

This had better end when her brace comes off.

I have no idea when that will be; I phoned the surgeon's secretary last week and she told me it definitely won't be just six weeks, might be seven weeks or possibly eight, she has a date in mind but can't be certain yet so won't pass it on. I did mention I really need to know, especially if it involves another overnight stay, which it may, but she was unable to even hint. At this rate I might just take the brace off myself and take our chances. At least without it I could sling her in a bath and let her take her rage out slapping water against the walls and sending bubbles flying across the room.

I am so weary of the "I wanna be in the playroom in the sitting room in the playroom in the sitting room you push me I DO IT you doit IdoityoudoitIdoitwaaaaaaaaAAAAAAAAAHHHHH".

Still, she's eating again, she isn't sick despite her best efforts (earlier this afternoon "I wanna sucky Mumma [muslin rag]" Oh - you want to suck it? "No I wanna sicky on it". She tried but failed).

We have carers here for her twice a day at the moment; much needed, much appreciated. But mostly convinced, I am sure, that I am far too strict. We have had another 48 hours in hospital, another 2 days when every lip wobble has been met with new toys and cuddles and comforts, and where I have been the evil one for daring to brush hair or suggest that necessary treatments will have to go ahead whether or not she actually enjoys them at the time. And the changes in routine mean we are back to hypervigilance, back to "what you doin? Why? what you doin?", back to not being able to focus on anything without knowing exactly where I am and why ever moment of the day, needing a run down on anything I might have done without her and a big worry about anything I might be about to do which doesn't include her, back to one eye following me at all times, one ear listening out even in her sleep.

And so I hold her, but she is heavy and awkward in her brace, and wants instead to sit in her chair and hang off the corner of my tshirt, one hand tangled in my clothes always and one giant wheelchair dragging behind me wherever I go. And rages when she can't.

It gets better, right?


julie said...

you know everything is just a phase. just this one is exhausting, patience-testing etc etc. tomorrow will have its own joys and frustrations. j x

Anonymous said...

what was that quote again 'this too will pass...' repeat it several times a day (hour) might not work but it might distract you a bit! Hope the brace comes off soon and LF is back to normal lobbing stuff around as opposed to constant lobbing!


Anonymous said...

I don't really want to sound like a meany--but could I offer a suggestion.
LF is quite aware of what she is doing--what if you just put her in her bed -- or somewhere safe yet out of the way-- or you just leave the room when she starts this ranting and raging--and she stays until she is ready to come out quietly and be with you and Mogor whatever.

Yes I can understand that she is frustrated and with good reason and life isn't easy as it was--and she does need a little more leaway and help--but she needs to learn that there are acceptable ways to handle this and you will do all you can to make life easy--when she does what she can--by not throwing fits.
I'm sure that right at first it will be quite noisy and loud--but I think it wouldn't take her too long to get the picture of what works and what doesn't work.

sarah bess said...

an incredibly vivid description, Tia. My deepest empathy for both of you, backed with sincere and fervent prayer.

Tia said...

Ignoring her would ordinarily be my first option. The trouble is that if I leave her in her wheelchair she tries to throw herself out of it, and if I leave her in bed or on the floor, she undoes her brace - and the brace must be kept done up for six weeks to allow her hip to heal. She has no feeling in her legs so has no pain around the wound - so causing herself further injury isn't a deterrent. I think it adds to her frustration actually as she really doesn't see why we've just strapped her into this thing.


Doorless said...

I am with anonymous! I think she is well aware of this and so wanting the extra attention which she can have if she behaves. If not time out!
I really feel for you because she is so darn smart!
Todya when I took the Elf into clinic about her sinuses the Princess saw they were having a book sale and had some toys, etc. Boy, did she rag and rag about needing new stuff! I had to explain we had to have money to buy the things and we did not. We need to save to bring Selina home! That helped. But, I tell you had I had some money I probably would have bought something for her!!!!
Wish I could help you more.

Doorless said...

Is there a way you could add a velcro strap around the brace that will lap over in the back so she cannot get at it. OOOH! She is just way too smart!

Tia said...

She is definitely way too smart!

That said, she is asleep for now all snuggled up and looking little and vulnerable and beautiful, and I can remember again that she's just a little four year old girl who is fed up of being immobile all the time. We're 3 1/2 weeks post op now, so hopefully less than 4 weeks to go - although we still don't have a date for the big brace removal. Next week we're away, and she reserves the worst of it when we're alone so hopefully that's a week without too many problems, and tomorrow she is back in school.

The end is in sight I hope

Becca said...

I'm so sorry that you are both going through this, Tia. I can particularly imagine how unimpressed Mog must be, beacon of maturity and quiet sociable-ness (sociability?) that she is.

First, LF needs a grabby stick - they're often called Helping Hands, this sort of thing.

Second, I know just how she feels and suspect that the sudden and (to her) near unexplainable loss of mobility is her major issue. In autumn 2007 I fell badly and dislocated my shoulder one time too many, and was hospitalised for a month having lost in one stroke the ability to independantly transfer, pull to semi-standing, and sit upright without significant support. For two weeks I didn't have any usable chair at all, then I had a gigantic, heavy reclining thing that I couldn't move an inch. It was months before I got a powerchair I could use. In that one fall I lost all of my mobility and all of my independance and spent months and months in utter despair over it all.

I'd never realised before that how much I moved. Some tiny adjustments and lots and lots of transfers - on the sofa, off the sofa, manual chair, powerchair, in the car, slide out onto the floor to play with the cat and rescue my keys, flump on the bed to stretch out my back. It was so very very weird to suddenly not have any of that, and even at 22 years of age I had huge difficulty getting my head 'round what had happened.

Can't begin to imagine how difficult it'd be to go through that kind of change aged four. LF - and yourself and Mog, of course - has my greatest sympathies.

One last thought - my 'active' manual chairs always had a fairly easy way to adjust the tension of or remove the back canvas altogether. Any chance of doing this with LF's one and rigging something else up so she can use it a bit instead?

The very best of wishes to the three of you for a peaceful next four weeks.

Becca xx

Alesha said...

BRILLIANT suggestion from Becca for the grabby stick!!!

I also loved the suggestion of velcro to wrap around the straps and secure behind her. A sash of any kind might work for that too, until she learns to push it out of the way.

And LOL she IS too darn smart!!! I was thinking of how grateful I was that Isaac could NOT do some of those things! lol!

But, just in case, I will be sure NOT to read this post should Isaac need this hip surgery. : )

God bless and will pray you can figure something out sooooon.

MOM2_4 said...

I have nothing new to add, except prayers for wisdom and courage and grace especially for the next few weeks!

Hugs & prayers!

Hazel said...

A mop with a long handle instead of a cloth. A wide corset-like thing that goes all the way round the brace and padlocks/staples/zips up at the back, get the sewing machine out, then you could leave her in her bed without her undoing it. I've just started leaving Joni in bed for five minutes when he's in one because however I try to respond or join in it just makes him worse, it feels really mean but for now it's the best thing when he's in excalation mode; five minutes reduces human ball of fury into sobbing baby who is relieved to see mummy back again.

Tia said...

Thanks Becca for your insight. We do have an adult grabby stick type thing - the problem is that it takes two hands for her to squeeze it closed, and then whatever she's grabbing is too far away for her to reach! We were researching a childsized one when we got her little Minny chair and then it wasn't necessary any more - I will start looking again.

Sadly her little Minny Chair has a solid shell so no chance of adapting it at all. Her power chair we have made work by reclining the backrest and removing one of the arms to allow for the extra width. But she doesn't want to use it - and she has to be at full stretch to push the joystick so it can't be comfortable.

I will summons up more patience for her - she does try so hard with everything and she is normally so fiercely independent.


mommytoalot said...

I can feel your pain.
I's just a phase and a grabby stick might help..or it may help her throw more things.
Good luck.
btw does she see a behaviour therapist? He/she may be able to help with some strategies to handle some of the outbursts she is having

Doorless said...

I had another thought last night . How about a time out corner when she does these things? Then you can explain why she was put there and she can be in sight so she doesn't remove the brace.
How frustrating she has to be and poor thing . How about giving her some drawing paper and having her draw out her feelings several times a day or give her happy , sad, frustrated , mad cards to give you before losing it al together. This will be over with soon and school is comming so they acan deal with her a bit each day.
I had no idea this would be so frustrating for her. Just goes to show that she is one smart little girl and so very cute!

swift said...

My only thought about a helping hand/grabby stick is potential as weapon material...


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