Advice re: Schools:
Maintaining a normal life is important for children and adolescents with a chronic condition. One big part of normal life for young people is education – something that should not be missed. And, in many cases, those with a rare autoinflammatory disease can indeed go to school as normal, whether that is nursery, pre-school, primary school and secondary school or college and university. To make attending education settings as easy as possible for your child, there are things for you to consider, and questions you should ask. We tackle a few of these on this site.
Information creates understanding:
If your child has a rare autoinflammatory disease and attends a regular pre-school, nursery or primary/secondary school, he or she may find that teachers and classmates don’t always understand how the illness impacts their life. It is difficult to understand something if you are unfamiliar with it. What you can do, is talk to them about the illness.
By talking to teachers and classmates, you can piece together what might be a puzzle to them – they probably have never heard of autoinflammatory conditions, or met someone with one. Explaining the causes, the symptoms and what it means for your child day-to-day can improve their understanding of your child and how best to involve them in school activities. In turn, this may help your child settle into everyday life at school and take part in all that it has to offer: play time, school trips, celebrations, etc.
If there’s particular everyday support you think your child might need due to living with a rare autoinflammatory disease, you may need to have further discussions with their teacher or the head staff at the school. By chatting this through openly, you can make a plan together on what daily support is available for your child and/or what can be done in certain situations to make their life at school easier. There are all sorts of things that can help, including:
Giving them a second set of textbooks so they don’t have to carry heavy books back and forth to school each day
Allowing a little bit more time during written tests
Excusing them from taking part in certain gym class exercises, or on days when the symptoms are worse, and assessing their physical education performance a little differently to other pupils
Agreeing to late school arrival on some days, i.e. when they have been unwell in the morning but felt better later on
Letting them use an elevator or escalator, if available
Providing teachers or caregivers with written details of any medication taken during school time, along with permission to give the medication if necessary
Notifying staff of medical appointments that your child needs to attend as far in advance as possible
Will my child need to go to a school that offers special care?
When thinking about the right school for a child who has an autoinflammatory disease, the first question to ask is – does my child require special care? This depends on the nature and the severity of a child’s condition, so the answer will be different for everyone. If you think there is a chance they could need additional support at school, you might want to consider what type of extra support could be helpful and whether their regular school can offer this or whether a school that specialises in providing care and support for children living with illnesses would be better for your child. Many regular schools can provide assistance for children with particular health and educational needs. A discussion with the head teacher or principal can shed light on whether your child’s needs can be met. (see Information creates Understanding article)
However, if you’re toying with the idea of a school that specialises in providing care and support for pupils living with illnesses, you should discuss this with your paediatrician and your child’s teachers, if they are already at school, to get their viewpoint before making any decisions. Your child’s school may also have a special health and educational needs coordinator who you can talk to.
If it’s agreed this is what is needed, then it is a good idea to visit specialist schools in your area to check them out, as the level of tailored care and support that is offered at one institution, compared to another, can vary. You should also be able to get more advice from your local authority. In the UK you can also get more advice from your local Information, Advice and Support (IAS) Service.
Once you’ve chosen a school, you may need to give them copies of medical documents or provide a letter from your paediatrician to show how attending that particular school would really benefit to your child.
Missing school time doesn’t mean your child has to miss out on education:
Due to having an autoinflammatory disease, your child may need to miss school from time to time – sometimes even for longer periods. If you’re concerned about your child missing lessons and therefore not keeping up with learning, you should speak to your child’s school and your local authority who can provide support to alleviate your concerns and help make sure your child doesn’t miss out on their education.
There are options such as home schooling and hospital schooling, or a combination of both that you can consider if your child is likely to be away from school for long periods of time. Your local authority should work with you to find a way to ensure your child can get as normal an education as possible.
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