India's first care-team meeting

A little more nervous than I thought I would be, I pull the dining tableforward and place a few extra chairs around it and make coffee and put thekettle on for tea. Melle got biscuits the day before and I put them onto twoplates. Just print the meeting agenda a few times and I am ready.

Just before 09:00 there is a knock on the door; the first girls fromZieZeZo have arrived.

Where other parents have 10 minute parent meetings at school or at thedaycare center, we will today have a real team-meeting with all the peopleinvolved in the day to day care of India. We are with eleven today; 5 nursesfrom ZieZeZo, Therese, Tosca, Lara [India's Physiotherapist]. And of course,Melle, India and I [Marja, from Visio could not attend] We arranged thismeeting for all involved, to meet one another, as not all see eachother duringthe week, and to exchange ideas and experiences. What kind of things do peoplerun into during the week, what are the likes and dislikes and what is possiblewhen working with India.

During the exchange of ideas it turns out that everybody likes workingwith India. This is really nice to hear. They love it when India is cheerfuland when they can move about with her, walk or sing and such. UnfortunatelyIndia is not always cheerful; her moods swing quite a lot. What is a generalproblem, i.e. something everybody recognizes, is that when India is crying orcomplaining, it is very difficult to get her out of it and turn it around. Alsoshowering and sleeping are recurring problems.

What is strangely nice to hear, is that these people come across thesame problems we face every day. We just know how to solve these problems inthe day to day, because we know her better. 

We give eachother tips and explain to eachother that when you areworking and living with India, you need to set aside your regular expectations.Expectations of everything, up to how you can arrange and fill your day. Youneed to take it as it comes. You can't plan, or at least expect to be able tokeep to a plan, for when India will have her nap. This because she might not goto sleep, or might slep, but only on your lap. You need to be able to let itall go and go with her flow in this, otherwise you'll only live frustrated. 

On the other hand you do need to be able to let India cry sometimes.Eventhough you cannot expect her to ‘learn', as other children do, to be leftalone for a while, you do need to eat, drink, or go to the bathroom. 

Besides this, India needs time to process stimuli from the outside.Sometimes it takes upto 15 minutes for something to come through; so when youhave already given up, she might just get into whatever you were doing. Weagree that whenever something new is offered to her, like the standing-table,the chair, or anything, we give her 15 minutes to get used to it. If she stillcries after 15 minutes we stop. Also we agree to let her eat sitting in herchair as much as possible.

Another thing discussed is that India's epilepsy can really get in theway of herself. It's difficult to imagine what goes on in her head. India's EEGshows a continuous image of epileptic activity. This might perhaps be the causefor her  to sometimes not be ableto drink from her bottle - perhaps her brain just doesn't quite remember how tosuck. Or her brain is just too busy inside to start drinking. Or it might alsobe the reason for her to set her head straight for 9 out of 10 times, but justcan't do it again for the 10th time. The epilepsy can also make her feelunwell. Especially just before a large attaque. This makes it very difficult tounderstand whether a ‘whining session' is just a regular babything, orsomething else. Myself I feel that India rarely whines for nothing. She doestry to communicate that she wants something, like to move or to be moved into adifferent sitting or lying position.

The exchange of eachothers experiences was very valuable and gives meideas on how to continue. Everybody had the feeling that India does recognizeus. Also Marja, Therese and Lara.

During the last hour of the meeting we show a film, which is a largepart of the last Saito workshop we went to. During the film we give extrainformation and after the film we show how certain exercises work. Lara alsoshows what she does with India when she comes, twice a week. They see how Indiaenjoys it all and I believe that helps for them all to also try to do theseexercises with her when they are with her. Before we know it, the time we setfor the meeting has passed and we need to end it. India is on Lara's chest,totally wrecked by all the work. Suddenly she needs to cough and wakes uproughly because of that. Her eyes open up wide and her body pulls together.About 8 seizure cramps follow. A big epileptic attaque, very clear to see forall of them. For some it has been a while, and for a few it is the first timethey have seen anything like this with India. It's disturbing to see and breaksmy heart every time. But now really everything is discussed, spoken of andseen.

Everybody found themeeting very valuable and we agree to meet every quarter year. During themeeting, everybody's involvement and love for our child is clear to feel forus. People whom I had never met before she was born. This is a strangely richsensation.