Students and Lupus

What do you do when your child has lupus and it’s time to go back to school?

School can be great for children. Not only is it a place where knowledge is absorbed and people shaped into good citizens, but it is also a place that fosters socialization and friendship. It is also difficult even for healthy children to navigate through. For children with chronic diseases such as lupus, it is even more so.

Childhood-onset lupus is rarer than adult lupus, making up 10-20% of people with lupus. Though less common, this form of lupus can be more severe than adult-onset lupus because the kidneys are severely affected over a longer period of time. However, with treatment, children with lupus can live normal lives, albeit with a few challenges and obstacles, just like adults with lupus.

When a child is sick, the complications at school are more than just being unable to concentrate because they are not feeling well. Teasing from peers, different treatment from staff (even if positive,) side effects from medications, and missing classes and events due to hospital visits can all make life rough for children with lupus. 

Thankfully, there are things that can be done to smooth out these rough spots and help your child as they go back to school.

Lupus and School

Lupus is rough. No matter who has it, it effects the entire family. It’s especially difficult for children, however. 

Lupus can cause many issues that make learning and socializing in school difficult, including fatigue, neurological symptoms like brain fog (which makes it difficult to concentrate and remember lessons,) pain, stiff and swollen joints, sensitivity to light (including the sun and fluorescent light,) and distraction from stress. School can also host many triggers for flares, including exposure to infection, exhaustion, school stress, and climate control issues (too hot, too cold, too dry, too humid, and so on.) 

Children with lupus can also easily feel singled out as they are not able to participate fully in school activities, have to miss days of school due to treatment, and have to navigate the complicated social labyrinth of being “the sick kid.” Certain lupus medications also cause physical changes to appearance, including undesirable ones such as weight gain, which can lead to insecurity and teasing from peers. 

So how can you help them?

Accommodations and Lupus

Under the Individuals with Disabilities Education Act (IDEA,) and the Americans with Disabilities Act (ADA) students – including both children and college-age students – are entitled to free services that can help bridge the gaps and give them the “least restrictive education possible.” These services aren’t ‘special treatment’ or ‘cheating,’ though some kids might feel the differences in how they are treated compared to others very acutely. These services are not ‘making things easier for one student at the cost of everyone else,’ they are accommodations, ways to even the educational field so that learning, socializing, and simply existing are fair for everyone. 

Accommodations for other challenges include giving a kid with ADHD flexibility in when they arrive for a test so that the test is not testing their ability to manage time in addition to history. Or, giving a kid with dyslexia a little more time to take the test to accommodate the fact that it takes longer for them to read and process words. It is certainly not unfair to give a kid with color blindness a test with high-contrast shades where it needs it instead of relying on, for example, a color wheel.

It is also not unfair to give a kid with lupus flexible due dates to accommodate hospital visits. Or, to reduce the number of assignments that they actually have to complete alongside maintaining their health so that they do not become overwhelmed. Or the ability to leave class early, take extra time, or have an assistant or aide accompanying them throughout their day. 

All of these children, and adults as well, deserve these chances at a fair shot at education and life – whatever they need. You can read more about accommodations here.

What Sort of Accommodations Do Children with Lupus Need?

Children with lupus have as many different needs as other children. The exact nature of those needs depends on the child and their experience with lupus. Usually, a child with special needs, including chronic illnesses and extended hospital stays, will have an Individualized Education Plan (IEP) that plots out what that child needs assistance or support in. This is usually decided by a team consisting of teachers, parents or guardians, and various experts as appropriate to the child’s needs. For a child with lupus, that can include a nephrologist, a general practitioner, a therapist, a psychologist, or other people. They determine what the child needs and, once determined, the child is entitled by law to have those needs accommodated. 

Accommodations depend on the child with lupus, who could have other challenges such as ADD alongside their lupus, but a few common lupus-related ones could include:

• flexible due dates
• forgiveness of absences
• online attendance of classes
• extra time on tests 
• flexible test scheduling
• non-limited bathroom breaks or trips to the nurse
• hand sanitizer in glass
• covers on indoor lights and anti-UV screens on windows
• personalized physical education
• access to a social worker or school counselor
• elevator access
• eating snacks in class
• water or juice permitted in class
• one-on-one tutoring
• teacher visits at the home or hospital
• school or state-provided transportation assistance
• healthy food options at lunch that accommodate special diets
• fact sheets and information about lupus 

Again, it depends entirely on the child’s needs and what their IEP decides. 

Unfortunately, despite the law of the United States requiring that schools, including colleges, follow these accommodations, sometimes they are reluctant or sluggish to do so. Sometimes parents have to step in to give reluctant school systems a hefty shove. 

So, What About Parents with Lupus?

The rush back to school can be rough for parents with lupus as well. Even after the first stressful transition back to the school year and the resetting of routines, the pain, fatigue, and other complications of lupus can make things difficult on the adult side, too. Children need their parents to help them get ready, ensure they get to school on time, assist with assignments, and advocate for them when their needs are not being met. That’s a tall order for an adult who has limited ‘spoons’ and might need to use most of them on basic self-care and employment! 

As a parent with lupus, it can be easy to prioritize your children too much and leave your own health by the wayside. However, parents need to resist that urge, because if you do not take care of yourself, then you could end up with a lupus flare and have less to give for your kids. It isn’t selfish to take care of your health.

It can be difficult for adults to admit that they may need help and advocacy themselves, but getting support from family, friends, or hired professionals is a way to take some of the load off of your shoulders and smooth things over.

Advocating for Children with Lupus

Parents of children with lupus need to be ready to push for accommodations and even fight for them if they must. However, this is a lot of pressure to put on parents, who may already be under a great deal of stress and have the additional weight of parenting and taking care of themselves and their families on their shoulders. For parents with lupus, this is magnified because they are also suffering from a chronic illness that saps their strength, and they must also advocate for themselves. For both healthy and chronically ill parents, however, there are some common tips and tricks that can make advocating for the proper treatment of your child easier:

• Communicate with teachers, and school staff frequently about what is happening in school. Sometimes, if they are familiar with you and you are familiar with their side of the situation, it is easier to influence the school. Absolutely talk to the school about your child’s needs! 
• Talk to your child about their experiences and challenges at school. Fostering an environment of trust between yourself and your child has many benefits, but where accommodations and challenges are concerned, they can help you not get blindsided by issues.
• Talking to other parents is a great way to socialize, but other parents are also a great resource for both information and taking actions that benefit everyone’s child. There is strength in numbers, both in the sense of collective will and, also, groups are more persistent where an individual might get fatigued. 
• Your fellow parents are also a source of help in other ways, too, such as helping with childcare, picking up children from appointments, or even assisting with your adult needs. Teachers have a lot on their plate, but they can also help a great deal, too. Do not underestimate the force of building a community! They may also have people or services they can refer you to that they can vouch for, which is invaluable. 

If you are interested in learning more, the US Department of Education is a good place to start finding answers. 

Forgive yourself for not being superhuman. You are a parent, but that also means you are human, and a sick one at that. Take care of yourself, and don’t expect yourself to be perfect all the time – that’s not a bad lesson to teach your kids, either.