Empowering special needs girls to cope with periods

August 26, 2023
|In Guide
|By Geraldine Connolly

My experience with a 13-year old girl with Autism

Picture the scene. I’m in my clinic on a Thursday morning with a patient. It’s busy. Suddenly we hear a commotion outside the door. It sounds like someone is distressed, crying, shouting. There is a sound like a door is being kicked, hard. I know what’s going on. I ask the patient and her parent if they would mind taking a seat outside the room. As I come into the waiting area (a busy corridor in the outpatients) I meet my next patient. She is 13 years old, tall, has Autism, is non-verbal and is terrified.

This is the reality of lots of parents coping with children with special needs. And my thought, every time I see these families is ‘life is hard enough’…. I know they are here to see me about managing the periods. Many times, I see a parent alone, as bringing the child into hospital can be akin to a military campaign in terms of planning, upset and fallout. The covid pandemic worked well for these situations as it normalised remote consultations and reduced the stress for the patient and the family.

Parental anxiety

Many parents come to me to discuss how to manage their daughter’s periods long before they have started. It’s a real worry for parents, in terms of managing the hygiene issues, unpredictability of timing of the period, how long it will last, pain, heavy flow, mood changes, and sadly the possibility of pregnancy in a vulnerable young person.  Some don’t know how they or their daughter will cope. My experience is that preparation is key. The first period is usually difficult, but with care and attention and developing a routine people are often amazed how well things turn out. We can often underestimate the resilience of our young.

Age of first period may be earlier (or later) for special needs girls

Some girls with neurological disease can get their periods at a very young age such as 9 or 10 years. Not too many people are aware of this, and it can leave parents really struggling to come to terms with the fact that their young daughter now has something else to cope with. It also means that the opportunity to prepare their daughter may have been missed. Talking to your child’s specialist about when to expect the first period may be helpful.

Other conditions may be associated with delayed periods or even no puberty development at all. This will have been flagged to parents by their doctors and medical treatment given to manage the situation.

Medical Conditions

Some with epilepsy will have a worsening of seizure activity around the time of the period, so called catamenial epilepsy. In fact, I have learnt over the years that many longstanding medical issues, which are more likely to occur in children with special needs, such as asthma, migraine, diabetes, constipation often worsen during a period. This is due to fluctuating hormone levels around the menstrual cycle.

So where do we start?

The first thing to realise is that there are many medical interventions that can help with all the issues mentioned above. There are effective means of treating pain, heavy flow, suppressing the period altogether, improving the mood, and providing contraception.

The second, is that we should not suppress puberty with the aim of preventing periods. To do this would reduce bone development leading to osteoporosis, is bad for the cardiovascular system and can cause ill health in general as the child grows older. It is denying the child the right to develop into the best adult she can become.

There are many things the family can do to prepare the child and themselves for when the period begins.

Education

It is so important to learn all that you can about how the menstrual cycle may impact your daughters’ particular issues. Knowing what happens during the menstrual cycle is a good place to start. Discussing how the menstrual cycle may impact your daughter with her health care providers is useful but bear in mind that nobody can predict exactly what is going to happen. However, your doctor can certainly help with issues that may arise

Involve everyone!

This includes dads and brothers as well as mums and sisters. Depending on the understanding of your daughter, the extended family may need to be involved. Professional carers are often a wonderful resource providing a fund of practical knowledge.

Many special needs schools run programmes for the child and sometimes include the family. These are excellent learning opportunities providing very practical advice and are specifically geared towards your girl’s needs. However, many children with extra needs attend regular school, and your child may not receive the information she needs. Seeking out an education programme specific to your child’s and family’s needs can be invaluable.

Specific tips for parents of girls with special needs

Honesty

The most important tip is to be honest. Your daughter needs to trust that the information you give her is as accurate as possible. Being positive is important but ignoring the real issues may shake her confidence in you. Keep a diary around your daughter’s periods. This may help you and she to pinpoint why she is acting out or feeling down when coming up to a period. Be aware however that periods are usually very erratic for a few years after starting.

Whole family involvement

Involve the whole family in the process if necessary. Mums should not be solely responsible for managing. If the child is unable to manage herself, are there others in the family who can assist with pad changing? Every situation is different. Some girls can be helped to manage quite easily, others will require on-going assistance. Similarly, families differ and while some dads are happy to help, there are others who find this too uncomfortable. We need to respect each other’s strengths and differences.  Is there any other way to contribute to what is often a very challenging time for the girl and her family? Having an open honest discussion with your family about all aspects can help spread the load and improve the understanding.

 Many conversations

Have the conversations with your daughter, obviously tailored to her understanding. Many conversations can evolve during normal family life. As Paula mentioned in her last blog the learning opportunities can arise quite naturally if there is an openness in the family. Explaining that one day she too may need to wear a bra or may need to use the pads she sees her mother or sister using. A broad-based discussion is useful. It’s best not to concentrate solely on periods, but to include the physical and emotional side of the menstrual cycle as well.

Explore the options

Trying different pads in her underwear before the period ever comes may be useful and fun.  You might discover something new! Many children have sensory issues and may dislike the feel of certain products. Consider eco products or cloth pads. They are less likely to cause irritation. Period underwear can be a game changer. I first learnt about period underwear from the mother of a patient with special needs. I have been recommending them ever since. Super absorbent, they can last for the whole school day and no fiddly bits which can irritate. It also removes the risk that pads can be removed from underwear in public causing embarrassment.

Try pouring coloured water on pads to show your daughter what it looks like. Or better still, show her your own used pad if that is acceptable. Showing her how to dispose of used pads is very important as she may not understand that there are special bins in public toilets for used sanitary wear. Making sure she knows what to do at home can prevent blocked toilets! Gently let her know that pads are private and should not be removed in public places (A common issue for many as the pad can become uncomfortable).

Manage Pain

Being aware that pain is most common on day 1 and 2 of the period allows you to pre-empt significant pain by giving pain killers regularly on these days. Reassuring your daughter that this is normal and treatable is important so that she doesn’t think there is something seriously wrong. Using alternative treatments such as hot water bottles or heat pads can become a time for parent and daughter to spend some time together in a positive way.

Other changes during the menstrual cycle

Telling her about the mood changes that can occur during the menstrual cycle may be appropriate. Understanding that this is something that affects many women can be reassuring. Tell her about the discharge that can happen at ovulation and during the second half of her cycle. Many girls worry that they have an infection or disease when this is actually a sign of a normal menstrual cycle. Being open about body changes such as underarm odour, body hair, acne can normalise what may be very frightening. If she is troubled by acne take it seriously and seek help if necessary. Acne can be a real blow to mental health.

Your daughter’s worries

Remember your daughter may have worries that you may have never thought about. In a family where there is secrecy or shyness around periods your daughter may worry about her parents’ attitudes to her now that she is menstruating. Let her know that she can talk to you about how she is feeling or if she is worried about anything.

BMI influences periods

Some girls resist the notion of growing up. Her body is changing in ways she doesn’t like and cannot control. Girls, particularly with an obsessive tendency, can develop an eating disorder. This can give her a sense of control and if under eating, may slow her development and stop her periods. Reassuring her that her development is something to be welcomed and that growing up has some advantages may help mitigate the situation. Obviously if you are seriously concerned about her body weight you should seek medical help.

Conversely many girls with special needs can put on a lot of weight. This may make her periods more frequent or the flow heavier. It can also make hygiene more challenging. If she becomes extremely over-weight her periods may stop. This is not ok. In situations like this you should seek medical assistance to re-establish the periods. Obviously trying to get the weight back on track is the most important part and you may need help with this.

Hero Parents

During my working life I was always so impressed and moved by the care and advocacy parents had for their special needs children. You deserve all the help you can get and there is a lot that can be done.  Learning and preparing is vital. Do not believe that this is your problem, and that you should not ask for help. There are many support groups for families who have a child with special needs which can be very helpful. If problems arise, your GP or your daughter’s specialist is a good place to start. You are entitled to good, empathic support.

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