She's grown so much, but her potential is far greater

I met Claire a while after meeting my now husband, Paul. We looked after her so his parents could have a break together. He was fiercely protective of his sister. She needed help eating, dressing, bathing. Claire is now in her 30's. She can eat, dress, and toilet herself. What else can she achieve?

Written by nzkellyscott, published 8 months ago.

Claire has grown so much as a person in the decade I've known her. From someone who you really had to focus to understand, who needed feeding every bite, who wouldn't leave her wheelchair in the car, let alone at home when we go out, who needed her brother to help her in the bathroom... Now she is someone who unpacks the dishwasher in the morning (sometimes while we're still in bed), can fully prepare herself for bed, comes away to stay with us for a weekend without her wheelchair. She has so much to say, and so much to offer, we just have to make sure we are listening.

Her attacks are far fewer than they used to be, maybe 10% as often but still tend to correlate with excitement. Recently she was able to tick off one of her life goals, going to Harry Potter World. The bonus was that she managed it without an attack (it is almost as if she was too stubborn to miss out on a single minute and willed herself to be able enough to enjoy it.)

We all live in New Zealand. Claire and her parents recently moved from the house they have been in since arriving in the country 20+ years ago, to a rural lifestyle block. This also meant moving away from her friends, and the support services which it has taken years to find. Our country is isolating enough both geographically and in terms of population size.

The move was stressful, but since the move, I'm downhearted to hear about behaviour problems arrising. Claire is strong, and in times of frustration uses that strength. She always feels guilty afterwards and is very apologetic. She knows it isn't right.

My interpretation of this is a lack of control. She knows how different she is from others, and thinking about where she is heading in her life must be scary. The behaviour also manifests in situations where she seems to be trying to get control back over very trivial things like who will lift her cup for a drink, or turning off the ipad game.

Every time I spend time with her I see how deep and wonderful she is, just like every other person in our community. I don't know what support or services she needs to continue to grow. I don't know if New Zealand has those services. I don't know if she understands what she is feeling. Or if I have it right in my interpretation. I don't know how to tell her parents "its OK" or that they are doing a wonderful job (which they are). But for everyone in the family, I think it is time for more positive momentum.

Written by nzkellyscott, published 8 months ago.

3 comments for «She's grown so much, but her potential is far greater»

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  • martacampabadal | published 9 months ago | Originally written in English

    Hi Kelly,

    Welcome to the community! So glad you've found us. It's amazing how many things Claire has achieved in 10 years.

    If you visit the members section you'll see this community has 2 more members from NZ: https://www.rareconnect.org/en/community/a...

    You can send them friendship requests and once they accept them you can email them privately.

    Also, have you contacted the New Zealand Organisation for Rare Disorders? Maybe they offer some services your family would be interested in?
    http://www.nzord.org.nz/

    Good luck!
    Marta

  • legan | published 9 months ago | Originally written in English

    Hi Kelly,
    I met Claire this summer and marveled at all her abilities that my daughter doesn't have at this time. We know of only one other family in New Zealand, Queenstown but have not been in touch in many years. I think the suggestion above is a good place to start. Your story of Claire is beautiful.
    Lynn

  • alexmargaretgillanders | published 8 months ago | Originally written in English

    Hi Kelly. It was great to read of the progress Claire has made over the 10 years you have known her. It gives me heart for my foster son, Xavier aged 9 who has AHC. He was diagnosed a couple of years ago. Also good to know of another person with AHC in NZ. We live on the edge of Lake Waihola just south of Dunedin. It would be great to know where you are so maybe we could meet at some time. Regards
    Margaret Gillanders

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