Preparing for periods: how to support girls with additional needs

There is a lack of advice for parents of children with disabilities when they hit puberty

Rachel Skelly knew she’d have to take matters into her own hands and be prepared for when her daughter’s periods arrived. Thirteen-year-old Yazmin “has autism, sensory processing disorder and hypermobility”, Rachel says, making dealing with periods a challenge.

“When I knew that periods were fast approaching, I knew that I needed to get some advice and some support. And, unfortunately for children with additional needs, that advice and support is not available in their services. As much as her services are really good, I never got the advice and support that I needed for the period stage, the puberty stage.”

Rachel says her daughter was non-verbal until the age of five. “Now she’s very vocal and able to speak, however for her to express pain, etc, she wouldn’t be great at that. She doesn’t know how to say where she’s in pain, or anything. I still have to help her in the bathroom in some scenarios. I always worried ‘what if she got them in school – would she go around destroyed in blood and not knowing what was going on’?”

Yazmin is in an “ASD classroom in a mainstream school”, her mother says. “I had spoken to them and they had given me great assurance.”

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However, Rachel knew she would still need to find a solution to making periods more manageable for her daughter.

Thankfully, Yazmin was at home when her period arrived. “For that first time, I did initially keep her home from school, because I needed to know she was going to be okay,” Rachel says. Yazmin coped well through the use of period pants that were recommended for her daughter’s particular needs.

Rachel needed to ensure the period pants used by her daughter had a black lining so she didn’t see blood. “That was the huge worry that I had, because she does not like the sight of blood.”

While Rachel ensures that everything her daughter needs is easily accessible, she is aware that one day she won’t “have period pants at hand” and so she puts a pad inside the period pants so that her daughter can learn, at a comfortable pace, to manage pads.

“Unfortunately, this world is not going to revolve around anybody with additional needs,” Rachel says. “I fully understand that and I try to push Yazmin to understand that, to the best of her ability, obviously. She does not like the sight of blood, so every time she goes to the bathroom she calls me to help her. I’ve got to put a fresh one on her every time she goes to the bathroom.”

Yazmin’s need to change pads is driven by the sight of any blood, as opposed to actually needing to change, Rachel says. “If I was to put normal pants on her with a pad and she went to school and the tiniest bit of blood got on to her pants, I can tell you the whole school would know about that because she would have an absolute meltdown if there wasn’t a spare of pants there for her. The blessing with the period pants is the black inside as well as well as the actual padding.”

As for the conversation and education around these issues, Rachel feels its sorely lacking.

Caitríona Nolan’s 14-year-old daughter Sophie, who has cerebral palsy, started her periods when she was 10. “Her primary school didn’t have sanitary bins,” Caitríona says. “One day she had to go to reception and the sanitary pad they gave her was one of these jumbo, giant things.

“The period cramping, and all of that, affects her balance. Her balance is completely off. The week before her period is due, her symptoms of cerebral palsy are exasperated. Sophie would be very sensory sensitive, and that’s where I found the period pants to be amazing.”

Because Sophie was so young, Caitríona found it difficult to source period underwear in a size that would fit her daughter. “I had to try and get her desensitised to pads. I got her the teen pads, but the whole process of changing a pad, I had little nappy bags for her in a pack, it’s just very difficult, particularly if they have any gross motor difficulties as well.

“She was triggered. She’s very sensory sensitive. So, to even wear a pad was very uncomfortable. She has to wear seamless everything. I need to cut the tags off absolutely everything. They’re [pads] not the most comfortable, especially when you’re trying to get used to them, nevermind if you’ve got sensory processing disorder, or if you’ve got sensory issues in general. That whole end of it was quite difficult and there were no supports. There was just me on Pinterest and Google, other family Facebook groups and parents all just going through the exact same thing,” Caitríona says.

When Caitríona found period pants that were suitable for her daughter, she says it was a “game-changer”.

“Especially when they’re irregular at the beginning. You don’t know when they’re going to come and the whole idea of being caught by surprise, it’s horrible.”

Caitríona feels we should be doing more to support children with additional needs and disabilities as they navigate periods. “They need to be educating girls from a younger age and they don’t have to scare them. It’s nothing like that. It’s empowerment.”

Former nurse and basketball coach Ellie Loftus, founder of Nickeze, says parents are regularly in touch looking for solutions for their daughters, who have additional needs and disabilities, when their periods arrive. Loftus says this time in a girl’s life can knock children off course if an adequate solution can’t be found. “A lot of girls with Autism or Down syndrome, for example, they have a massive fear of blood. Anytime they’ve seen blood before, they’ve hurt themselves. They cannot process where this blood is coming from and they’re going to have to do this for 30-40 years of their lives.

“Many can’t bear seams, or anything rubbing against them, with sensitivity issues, so they are taking their pad off, when they go into school and throwing it out into the middle of the class and the teachers are going mad because it’s a bio hazard, because it’s blood stained, and they’re ringing the parents and the parents are upset.”

For parents of children who have additional needs, there are so many “worries that nobody talks about, and there’s no voice”, Loftus says. “Everyone talks about it [periods] in the context of able bodied. They never talk about it for the challenges for girls with intellectual or physical disabilities.

“Even from the dignity perspective, can you imagine your daughter having to go in and being in a wheelchair or having a physical disability and someone going to a bathroom every time they have a period and changing them and not having that dignity and that privacy we have. Period underwear is a much bigger conversation ...It’s about the challenges that a lot of girls and women have, that nobody speaks about”.

Loftus says she hasn’t come across “any education or awareness of girls with additional needs and period management”.

This, she says “needs to be Government policy led”. There is “a really big need for a lot of females out there that are totally forgotten and have no voice”.