The emotional journey of parents with a child having special needs is complex. Initially, parents may experience shock and denial upon receiving the diagnosis, followed by sadness at the loss of the perceived life they had envisioned for their child.
As concerns about the future arise, feelings of fear and anxiety may take hold. However, over time, the parents gradually sail through these emotions, eventually reaching a place of acceptance and adaptation.
One of the fears of the caregivers is how to manage the challenges of puberty in their children. For those with girls, the thought of onset of menstruation is daunting. Girls with physical challenges may have impaired mobility that can make it difficult to access bathrooms and for changing pads, leading to hygiene issues. They may not be able to find positions that alleviate pain or may have a harder time managing fatigue during menstruation. The problems faced by visually challenged include struggling to identify and properly use menstrual products. Without sight, they may find it harder to apply them correctly or determine whether a product has been inserted or placed properly.
Girls and women with intellectual difficulties face distinctive hurdles due to difficulty in comprehension and communication. The onset of menstruation can cause significant disruption in their lives as well as the lives of their caregivers.
A common problem faced by the caregivers is difficulty in managing menstrual hygiene due to non-compliance in using sanitary care products. Children with conditions such as autism have sensory issues which cause non-compliance. A mother of a child with autism took 6 to 7 months to train her daughter at the onset of menstruation to use sanitary pads. But even 5 years after that, she had to be vigilant at the time of menstruation, as her daughter tended to remove the pads and flush them down the toilet.
The caregiver of a 22-year-old girl of determination says, “My daughter gets very irritable at the time of menstruation as she dislikes the use of sanitary pads. Even at the slightest stain, she insists that her pad be changed, so sometimes I need to change her pad every hour. She gets agitated if there is a delay in changing her pad.”
Another issue is irregular menstruation. Some girls and women have medical conditions, such as thyroid disorders, or may be taking medications, like anti-seizure drugs, that can affect the regularity of their menstrual cycle. This erratic onset of menstruation is also a challenge for caregivers to maintain menstrual hygiene.
Premenstrual behavioural changes is also a challenge for caregivers. As the girls may not be able to express their experience in words, pain during menstruation can translate into aggressive behavior. This can cause self-harm or projecting aggression towards the primary care givers, mostly mothers. A mother of a 16-year-old with autism voiced her concern about managing her daugther’s premenstrual behaviour. As she was becoming physically bigger, this petite mother was finding it difficult to restrain her daughter from self-harming behaviour. Some mothers noted how their daughters would become very withdrawn and moody just before menstruation. It deeply pains these mothers that their daughters are unable to express what they are feeling.
A few tips for caregivers:
1) Start early:
The concept of menstruation should be introduced before the actual onset using appropriate methods. There are many materials available for free online suited to convey the matter to people of determination. This includes the use of flashcards and social story videos.
2) Do not hesitate to seek professional help
Caregivers are sometimes hesitant to seek professional help to deal with menstrual issues of their daughters. Timely and thorough assessment by doctors can help manege many of these problems.
3) Be part of support groups
Being involved in support groups where people with the same issues meet and discuss their experiences can provide solutions to many issues the caregivers face. It is important for parents to recognize and accept their feelings of stress, exhaustion, and frustration. Understanding that it is normal to feel overwhelmed can be the first step toward seeking help and making changes.
4) Identify secondary caregiver
It is essential to have a secondary caregiver who can periodically take over the responsibilities of the primary provider to prevent caregiver burnout. Schedule time for self-care, even if it is just for a few minutes a day. Try to ask for help from family or friends to give you time to rest, exercise, or engage in activities that recharge you.
5) Celebrate small wins
We tend to focus on what’s not going well but acknowledging and celebrating small victories—whether in your child’s progress such as her slow but improving independence in menstrual care or your own resilience—can help shift your mindset and provide a sense of accomplishment.
In conclusion, the emotional and practical journey of caregivers navigating menstruation for their daughters with special needs is undeniably challenging, but it is also filled with moments of resilience and love. Caregivers face daily obstacles in ensuring comfort and dignity during menstruation, from managing hygiene to understanding complex behavioral changes. In the end, it is the unwavering bond of love and determination that guides them and that every small victory counts.
// Dr. Mehnaz Abdulla, Specialist Obstetrics and Gynecology at Aster Women Clinic, Al Qusais,
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