Having a child start primary school is difficult at the best of times. It can be tough deciding on the right school and then there’s the challenge of getting comfortable with the idea of letting go.
When your child has type 1 diabetes the challenges of finding a suitable school and handing over care to someone else are even bigger. It’s a condition that requires frequent and regular monitoring and attention to detail to ensure blood glucose levels remain in the ‘safe’ range. Insulin can effectively control blood glucose, however there’s always the fear that too much or too little insulin will cause complications or affect the child’s behaviour.
But as Suzie and Tristan’s experience shows, like all children, type 1 diabetics can attend school, make friends and have a good time. And like all other parents, their mums and dads can find a little relief from caring for a child with a chronic illness.
Being emotionally prepared for starting school
“In the lead up to the start of kinder (preschool) last year I was beside myself,” Suzie said. “For a good 6 months before Tristan started it really affected me, I was so worried that something would go wrong.
“Reading about other parent’s experiences on the online support group I belong to really helped. I asked lots of questions to make sure that everything possible was covered. Leading up to Prep (Kindergarten) this year, I went through the same emotions. At preschool Tristan was in a group of 30 kids. Now he was going to a school of around 300 kids. I had to make sure that the staff had all the information they required to look after Tristan.”
Finding the right school
Like all parents, Suzie looked around for a good school for her son. But Tristan’s type 1 diabetes meant there was a lot more to consider. “I had meetings with the school principal to discuss all that was required to care for Tristan,” she said. “When I first approached the school they did not have any policies on how to care for a type 1 diabetic. Tristan was the first type 1 diabetic at the kinder and the teachers had never dealt with the condition before.”
But they were very helpful and willing to do all they could to make sure he could attend and would be well cared for. “The staff had their first aid training but there was no nurse at the school, so they applied to have an aid to help with Tristan’s care,” said Suzie.” The school was able to receive some funding from the government for the aid but the school covers the rest of the cost themselves to make sure that Tristan gets all the care he needs.”
School principal Rachael said, “Tristan has a full time aid in his classroom solely to help him manage his diabetes, as well as his classroom teacher who is also trained in managing diabetes. A second aid is also available to assist in the event of aid or teacher absence.”
Teaching the teachers about type 1 diabetes
“The principal is truly an amazing, caring and loving woman!” Suzie said. “She told me, ‘We all want to make sure that we look after Tristan, it is the whole school that will keep an eye out for him’ and organised for me to come in and give all the staff information.”
“Our training has involved going to the Diabetes In-School Seminar for Teachers, which was organised by Diabetes Australia,” Rachael said. “We have also had a Diabetes Educator come to visit at our staff meeting to inform all of our staff about type 1 diabetes, and what signs or symptoms to be aware of.
“At first, all the information that was on hand and all of the knowledge that we needed to know was a little overwhelming. But once we actually had Tristan in the classroom and were looking after him, everything became more routine and familiar as time went on. As the information is sinking in, we are able to make connections more easily as to why Tristan may be high or low because our understanding of diabetes is getting better all the time.”
Suzie said she also, “spoke to Tristan’s teachers about how I care for him at home and showed them how to do a finger prick test and work his insulin pump. During the first couple of days of school I went in at recess to work his insulin pump. The aid was able to work the pump on her own from week two.”
“I also explained what they needed to watch out for in terms of his behaviour. Changes in his insulin level affect his mood and behaviour. It’s not always easy to read the signs, but there are some common ones. Usually when he is high, he will drink more water and go to the toilet more often and when he is low, he will be zoned out and feel quite tired.”
Although with carefully controlled eating his insulin pump should provide the right amount of insulin to keep his blood glucose level in the normal range, Suzie said that “anxiety, excitement or illness can send it either low or high. Even the excitement that comes from activities like playing sport or in the playground can cause his glucose level to drop.” While many diabetics can recognise when their glucose is dropping, Tristan is “hypo-unaware” meaning he can’t recognise these signs and administer insulin when he feels his glucose levels dropping.
Managing type 1 diabetes at school
Principal Rachael said, “Tristan communicates to us if he feels unwell and we respond accordingly. Because he displays little symptoms of either being high or low with his blood glucose levels, it’s important for us to act promptly with a blood glucose level test. With the consistency and routine of school, we are able to monitor his diabetes regularly. Tristan has his blood glucose level tested before recess, lunch, and fruit time after lunch. He may also require additional tests if he is not feeling well or is partaking in sport or physical activities.”
Suzie told us, “The school has a Diabetes Management Plan that is specific to Tristan. Different treatments work for different kids.When Tristan’s glucose level is low we give him two jelly beans, whereas another child may require three or more. Sometimes two jelly beans is enough but other times four may be required, depending on how active he has been and other things like the weather- when it’s hot he sweats and uses up more energy.”
Getting ready for school
Now that Suzie and Tristan have found a school with caring, loving staff, they’re adapting to the pressures of getting ready for school each morning. “Most mornings Tristan has trouble waking up. Some mornings he is happy to wake up, others he can become quite irritated and uncooperative. The change of routine and having to be out the door earlier is something he is slowly getting used to. Kinder (preschool) started at 9.15am. Now we have to leave home by 8.30am at the latest.”
And with type 1 diabetes, breakfast on the go is not really an option. “I have to keep an eye on what Tristan eats and when,” Suzie said.
A healthy school lunch box for a type 1 diabetic
Any parent who has kids at school will know the challenges associated with packing a healthy school lunch box every day. But when type 1 diabetes is involved, the challenges are greater. Suzie has to, “weigh everything Tristan eats and calculate the carbohydrates in each meal and record them so the teacher can input them into his insulin pump. This information is required for the pump to calculate the correct amount of insulin. Tristan has to eat and drink everything in his lunch box- nothing more and nothing less- so that the insulin calculation is correct.”
Getting the insulin calculation wrong, affects Tristan’s behaviour and functioning. “When his levels are high, he has trouble listening or following basic instructions.”
To complicate matters further, a type 1 diabetic’s school bag doesn’t only contain food, it also holds all the supplies needed to monitor and control his insulin on a daily basis. “The management pack contains the finger prick meter for testing his glucose levels and all the disposables needed to operate it- that includes needles and testing strips. There’s also supplies needed to operate his insulin pump (and a spare pump just in case) as well as supplies for emergencies- jelly beans, juice, insulin and syringes.”
Managing blood glucose during sport and play
Some of the most enjoyable parts of the school day are sports and play time. While diabetic kids enjoy these as much as all others, they need to approach active play with a little caution. Suzie said that, “When Tristan runs and jumps around he tends to get air bubbles in the insulin pump tubes. If he falls over the cannula which connects the tubes and insulin to his body can bend or fall out. This means the insulin doesn’t get through and his glucose levels rise. If he’s very active and burns too much energy then his glucose levels drop. This means glucose monitoring every half hour while he’s playing and for several hours afterwards. My main worry with him starting school was playtime and lunch time, with all the running around. If he doesn’t eat enough carbohydrates Tristan’s blood glucose level will drop.”
These challenges haven’t stopped Tristan participating in outdoor play at school. According to Rachael it just requires a bit of extra organisation. “Preparation and supervision is required for activities like sport and games. With this support in place, Tristan can compete and partake. Extra food or juice is needed prior to the physical activity and blood glucose tests before and after can ensure that he has a good time with minimal repercussions to his glucose levels.”
This active play is important for Tristan’s health. Suzie said, “Tristan needs to have a very active lifestyle to avoid any diabetic complications later in life, especially problems with his hands and feet. From a young age we want him to know that leading a balanced lifestyle is very important for him. Last year Tristan did swimming for around 8 months but found it quite difficult so this year we started him in martial arts which he does sometimes twice a week.”
Sharing type 1 diabetes with classmates
For Tristan starting school also meant finding ways to deal with the curiosity of children who had no experience of type 1 diabetes. “In school he is the only type 1 diabetic,” Suzie said. She decided, “it would be best to be open and honest with Tristan’s classmates, so that they knew from day one.”
Principal Rachael agrees. “We had a class discussion in which Tristan was able to tell of his diabetes and experience,” she said. “The students realise that he wears a pump and that special attention is needed by staff to attend to it. Blood glucose level testing is done in the classroom and the students have come to know that it’s just stuff that happens on the other side of the room. If students ask questions about Tristan, his pump or his testing equipment, we inform them with appropriate, truthful answers.”
Because of the need for constant testing, it was difficult to hide his condition. “At first the kids looked curious when I was there testing Tristan and one or two asked what I was doing,” Suzie said. “I explained to them quickly and also sent along a book called ‘Darcey has Diabetes’, which Tristan’s teacher read to the class.”
Establishing friendships can be difficult for any child starting school, but when the excitement of play affects your blood glucose levels, there are extra challenges involved. Suzie said, “Tristan tends to play in the sandpit with his car. He has a couple of friends and even though the kids know in the back of their mind that Tristan is different, it’s forgotten about until he has his finger prick test. So far Tristan has not said anything about being bullied because he’s different. We have made him aware of what a bully does or says and what he needs to do if he was ever in that situation.”
Rachael said, “Tristan is loving the independence of being at school, being able to mix with students and having freedom on the playground at lunchtimes. Other students are aware of his condition and treat him no differently.”
While there are extra challenges for a child with type 1 diabetes when it comes to making friends, in Tristan’s experience, the friendships he has made have been extra special. “When Tristan was in kinder he had such an amazing best friend named Jude. As Tristan had to have a particular size serving of food for lunch, he was often the last to finish. Jude always waited for him go outside and play and looked out for him. This year, Jude and Tristan are at different schools and Tristan hasn’t spoken of a particular best friend yet.”
Playdates and excursions
“Though Jude is going to another school, we will be catching up for play dates with him and his family as much as we can,” Suzie said. But it’s already apparent that organising play dates and other activities outside of school won’t be straight forward. “Tristan has begged to go for sleepovers, but this is something we have to put off for years, until Tristan can fully care for his diabetes,” she said.
“With all school excursions, I will be attending as much as possible as a parent helper on the day. As there are so many kids, I don’t want to put any more pressure on the teaching staff and I find it quite enjoyable getting to know the other kids.”
Advice for other parents
“No matter what condition a child has a parent will always worry about handing over care to someone else, Suzie said. “It really puts a lot of pressure on the main care giver. I was like that for more than three years- Tristan was with me 24/7. Since I learnt to ‘let go’ a little and he is at school my sister in law baby sits the kids on occasion. It has taken a whole lot of pressure off me. It’s less stressful now that I take a break and breathe a little. My partner and I try to go out one night by ourselves to dinner or a movie at least every 2 months. We give the kids their dinner and my sister in law will put them to bed.”
Suzie said that even though letting go is difficult at first, it’s well worth the effort. “There’s a huge amount of pressure that comes with looking after a child with a chronic illness. I have seen so many relationships fail as couples don’t spend enough time together away from the kids. Though sometimes it can be quite difficult to make that time, it’s so important for our relationship.”
There have also been benefits for the school. Rachael said that, “Tristan’s transition into primary school has been really positive. He has settled into his class and is able to participate in activities like any other student. Having Tristan at our school has opened up our awareness tremendously towards type 1 diabetes. It is our aim to provide the adequate care he needs so that he can reach his potential in every aspect. He has a fantastic attitude toward school, approaches work with enthusiasm, and is kind and generous to his classmates.”