Saturday, 16 June 2012

When nothing you do is ever enough


Chrissy at Marwell Zoo 2005

I've come down with a bad case of 'Why Mes?' Out of all the hundreds of disabled children at Marwell Zoo's Dream Night why does it have to be my child that throws herself down on the ground screaming?

These photos were taken at Marwell Zoo seven years ago. We'd had tricky moments with Chrissy taking to the ground then but she didn't kick off. Not like yesterday anyway....



When Unique kindly offered us tickets, I had pretty visions of meeting other families, maybe chatting over coffee and getting some nice photos of our children together. When WILL I learn?

Chrissy had been switching rapidly between Jeckyll/Hyde all afternoon. Such a rapid on/off on/off mood cycling that I thought again that her psychiatrists must be missing a trick - it had to be an underlying mental health problem. One minute she was screaming 'go away mummy!' and pulling her hair, the next smiling sweetly and saying 'hello mummy. Are we going out in the car?' She kept moaning intermittently too as if a pain or 'something' was coming over her then passing by again. She was also obsessing about food - a constant theme these days.

I was alone with Chrissy for about four hours until Ian came in from work and I felt like I was going nuts myself, just trying to keep up with her moods. How do you care for someone whose personality changes rapidly in front of your eyes? You're on ever-shifting sands.

Once again I fell for the myth that Chrissy would be fine if......in this case, if we gave her everything she needed and took her out somewhere she'd enjoy.

She coped well with the traffic queues into the zoo and walk through the crowds to the penguins. We introduced her to another family whose six-year old whirlwind of a daughter has the same chromosome disorder as Chrissy. Then Chrissy kept asking to sit down. We went back to the entrance and asked for a wheelchair that we'd reserved beforehand just in case. While we were waiting for it the moaning and irritation escalated, and she flung herself onto the ground where she stayed screaming, roaring and biting her hands for about five minutes. She was oblivious to the wet and mud, and crowds streaming through. Ian and I waited it out quietly as we always do. Once, she stopped, smiled sweetly up at us, and said 'it's not raining now is it?' Seizing the moment, I chirped: 'Look, Chrissy's got a black and purple wheelchair. Lucky lady!' 'Nooooo!!' she shrieked, kicking off again. I had to turn away and count to ten but Ian was as patient as a saint (he isn't always but he's more patient than me!) Chrissy's mood switches continued until, eventually, actions spoke louder than words. She got up and happily climbed into the wheelchair. She beamed as we piled her pink lunch-box, Snowman pop-up book and bottle of diet coke onto her lap - and for a while the world seemed a better place.



Ian gamely manoeuvred the chair holding 12 stone+ of Chrissy up hill and down dale (her weight's probably doubled since these photos were taken) but she showed no interest in the animals. She was moaning and groaning again and I wondered if the wind was annoying her. It was gusty enough to blow her hair into her face, which she hates. We put her hood up and tried to jolly her along but she kept letting out shrieks and, inevitably, threw the contents of her lunchbox onto the grass. Greedy crows swooped down to eat her leftovers and, nearby, excited children had their photos taken with someone dressed as a tiger, Chrissy jumped out of her wheelchair like Andy in little Brtain and threw herself down on the ground again. As I waited, I felt irrationally and selfishly furious with her for ruining things when we'd done all we could to make it special for her. 'For God's sake snap out of it!' I exploded. 'Get up NOW!!' She ignored me of course. Sometimes when I bellow at her she looks startled but it's like she makes no connection between her behaviour & my anger, & it leaves me feeling guilt-ridden - so all-in-all losing my temper is a pointless waste of energy. We had no choice but to abort the visit then. On the drive home, Chrissy sat quietly and serenely while I continued to brood bitterly over my lot. This time I told myself to snap out of it. You can't hold on to negative feelings around Chrissy. Her face will light up with a smile, or she'll say something funny or make another impossible demand. She acts like an 'ungrateful brat.' It's not Chrissy's fault that nothing we do for her is ever enough but sometimes it bloody well feels like it is.

Back at home, Chrissy was still unsettled and didn't want to be cuddled. There was a lovely calm time where she sat engrossed in her Snowman 'flap' book but the moaning and groaning continued all night, and she wet the bed - rare for her these days. I think a seizure may be brewing. Or something. Your guess is as good as mine.


I am a SWAN UK (Syndromes without a Name) blogger
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12 comments:

  1. I cant imagine the tough time that you must have to endure sometimes. My daughter is nine now but her mood swings are just starting to barrel out of control with her getting quite violent. She is non-verbal as well which just makes it even more difficult and embarrassing when we are out.
    All I can say is that you obviously do a fantastic job and you shouldn't beat yourself up and feel so guilty about it. I think we all have days where we wish we had a different lot in life but then we realise just why we do it and get back on that horse and start riding again.
    Keep your chin up and thank you again for sharing!

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    1. Hi there, things got more difficult when Chrissy reached around 9 too & I couldn't pick her up to remove her from situations. Like you say, the down times don't last. Helps to vent at times & it means so much to get comments from other parents like you going through similar situations. Thank you!

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  2. So sad to read this. I wonder how Chrissie feels when she's unsettled? Do you ever know? I have 'difficult' behaviour from my son from time to time, and I've never learned the art of staying completely calm x

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    1. Hi Looking for Blue Sky, I often speculate about what Chrissy feels when she's unsettled. Sensory issues? bi-polar? tics? schizophrenia (associated with her chromo disorder) sub-clinical seizures? Even though she's verbal she functions like a two to three year old, & isn't able to express how she feels & I don't think she really knows herself. Always thought she would be able to tell us when she grew up. If anyone has perfected the art of staying calm in this kind of situation I wish they'd divulge their secret! x

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  3. My #5 with Reactive Attachment Disorder can go from 0 - 90 in nothing flat. Keeping calm, and taking a minute when I can't, seems to be my best tools. I do think better on the fly than my husband. It is hard - I understand!

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    1. Thanks Julie, I just wish I understood what was underlying these - they're so unpredictable, can go on & on & are like a live thing that takes Chrissy over - but yes, I keeping calm is paramount, & one of the biggest challenges!

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  4. I can relate to this with my 12 yr old. She is still small enough for me to bundle into the chair and move away from the disapproving looks. I have days when I have this artificial grin on my face as she is "performing" - me pretending this is nothing that bothers me and other days I "get the hell in" and use the "get up now" etc - with absolutely no response from her... I am more cross with other peoples' looks and judgement than with her behaviour. Thanks for writing this - it made me feel like I am not the only one! :)

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    1. Thanks for sharing your experiences too Moira. It helps me to read comments like yours. I used to notice people's stares but I don't now. I think that because Chrissy's an adult, it's obvious something is very wrong so people don't tend to judge like me as a parent like I felt they used to.

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  5. I have no words of advice I can offer or similar experiences I can share but I follow your blog and really admire your honesty and how you cope with things (even though you may think you don't sometimes) it is obvious that despite the difficulties Chrissie is loved very much.

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    1. Thanks Anne, I do agonise over how I react to the challenges Chrissy presents & I'm glad that my love for her comes across. Although she's a complete pain in the backside she's also extremely easy to love :-)

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  6. Thank you for being so open and honest Jane. It must be heartbreaking to watch chrissy when she is in such turmoil. We all snap from time to time. At the moment Hugh doesn't present with behavioural challenges, I'm hoping that wont change, but I still get cross when he is crying for no obvious reason, or waking repeatedly in the night and I feel awful then because I realise he can't help it. Tiredness and stress all play a part. It is plainly obvious how much you love and adore chrissy and you and Ian are terrific parents who, despite the difficulties she has,always ensure she has new experiences to try.

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    1. As you can probably tell from my posts, I never get used to it or stop searching for answers LittleMamma. Chrissy's behavioural challenges were present from infancy (prolonged screaming outbursts as a baby, so marked because the rest of the time she was the most placid, sunny-natured baby ever.) Long may Hugh remain behavioural-challenge free! x

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