One of life’s little victories

I am sitting in the corner of a classroom observing a class of 4-year old Japanese (and Korean) children and our daughter get ready for the school day. It’s our daughter’s first day of (pre)school.

Our daughter started school about 10 days after the other children, and so the first thing the teacher does is to introduce her to the class. She pulls our daughter’s dress up to reveal underneath her insulin pump strapped around her waist. She instructs the class never to touch it. Our daughter smiles as the children innocently express curiosity towards a big grey lump under her arm (which is her Continuous Glucose Monitor). ‘It’s for her medicine too. You shouldn’t touch or pull it.’ the teacher says.

Not only is our daughter the only blond girl in her class, but she’s also the only child in her class – or in fact in the whole school – who has a disability. She has Type 1 diabetes.

Due to her disability, I will be spending many hours in that corner of that classroom. I (or my husband or our au pair) will not be at the school only for the morning of the first day, but we’ll be there all day every day for at least the next two weeks observing and instructing, and if necessary, intervening with our daughter’s care.

But that’s fine. I don’t mind. I’m over the moon that this school accepted our daughter as a student. You see, our daughter’s application was rejected in every other school we contacted. The view of all those schools was that their school was not a suitable place for our daughter, and to be honest, this was the initial view of our daughter’s current school as well. However, after a two-month-long email correspondence between us, the head of paediatrics at Osaka University Hospital, and the school, and two face-to-face meetings with the headmaster and teachers, we received an email telling us that they were willing to give it a go. And we were chuffed to bits.

We were chuffed mostly because we felt that our daughter (like other children) needs the company of children of her own age. Since moving to Japan, our daughter has mostly spent time at home with an au pair. She’s loved our au pairs and they’ve all loved her (she’s a little sweetheart), but due to her having been at home instead of a preschool/nursery, she hardly has any friends of her own age in Japan. So, when I observed from my classroom corner vantage point that another pupil came and held our daughter’s hand and escorted her to a rug on the floor for the story time, I was nearly in tears. (Perhaps they’ll become good friends, and for the first time in two years, we can throw a kids’ birthday party on our daughter’s next birthday.)

After having lived in England, where most schools/nurseries try to be inclusive and offer a place to children with all sorts of needs, I was oblivious to the kinds of battles some parents of children with extra physical, mental or medical needs have to fight. When we were in England, we didn’t really have any problems getting our daughter into a nursery (even though she has Type 1 diabetes).

At the age of 11 months our daughter started in a private nursery in Brighton, England. The nursery manager hardly flinched when we said that our daughter needs medical support during the nursery day and that a specialist diabetes nurse would have to come and train the staff for our daughter’s care. Several members of the staff completed the training and our daughter spent a happy 1 ½ years at that nursery (and then we moved to Japan).

Even though having a special needs child in your class might initially be a little scary, learning the care aspects of these children is usually nothing that a person with normal cognitive abilities could not learn after a few hours of hands-on practice, after all, thousands of parents (without prior medical training) learn these things.

I believe that in Japan state schools have to accept children with disabilities, but the general practice seems to be that children with ‘special needs’ (a) need to go to special schools or (b) if they go to a mainstream school they will have to have permanent one-to-one help. I think this is largely because Japanese society does not like risk-taking or mistakes being made (you might have seen important politicians and CEOs bellow and resign on prime time TV when they’ve made a mistake). Maybe because of this, not many people/schools want to put themselves on the line with children with extra care where mistakes are more likely than with ‘normal’ children.

Thus, the fact that this school was willing to take that risk with our daughter was great. And the first day at school made me feel confident that the staff would learn to cope with our daughter’s medical needs and it would all be fine, given that our daughter’s classroom teacher and the teaching assistant made the effort of absorbing the information about our daughter’s care, and when I needed to check our daughter’s blood sugars by a finger prick test, they were happy for me to check it in the presence of the other children (and did not make us hide in the toilets, an empty corridor or a broom cupboard). The PE teacher and his two teaching assistants were also fantastic and wanted to know every detail about everything – even about our daughter’s devices that they wouldn’t need to use. The teaching assistants that were managing recess time seemed positive and eager to learn how to use our daughter’s devices. And the headmaster popped his head through the classroom door at least twice during the school day to check that everything was going ok. He also came and had a chat with me at the end of the school day to discuss the day in more detail.

So, here I am sitting on the sofa with my laptop on my lap thinking back to the first school day and smiling. In the coming weeks and months, our daughter will make friends, learn some new academic and non-academic skills and feel like she’s just like everyone else. That’s exactly how her life should be.

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If you have been reading my blog you know that our daughter has Type 1 diabetes (you can find more info about Type 1 and our life with the condition for instance here and here and here).

But, in short, Type 1 diabetes is an autoimmune illness often diagnosed when the patient is an infant or a teenager (note that Type 2 diabetes is a different disease). In Type 1 diabetes, the patient’s pancreas can no longer produce insulin, an important hormone without which a person will die. This means that the patient or their caregiver will have to inject insulin with an insulin pen or with insulin pump, which administers insulin via a cannula. Because (due to various reasons) it can be difficult to estimate the correct amount of insulin administered, the patient or their caregiver needs to check the patient’s blood glucose level frequently to make sure that they have not had too much or too little insulin. This can be done by doing a finger prick blood test or by using a ‘blood free’ continuous glucose monitor which tracks the patients glucose levels via a sensor(cannula)+transmitter+receiver combination every 5 minutes. Our daughter is lucky to have an insulin pump and a glucose monitor, which means that monitoring and controlling our daughter’s blood sugar levels is relatively easy, although exhausting!