I received samples from Natracare for this post; all opinions are my own.
If you’re like me, raising your child, who has special needs or is autistic, you may be kind of fingers-in-ears, saying “la-la-la” about puberty. You may think, “She’s only 9 or 10” OR “I have plenty of time.”
But having raised a daughter with Down syndrome who showed her first “sign” of puberty at age 9, I can tell you that this journey will be upon you very quickly! More than half of girls get their periods in their tweens, and some girls start as early as 7 or 8. So with a 13 year who’s had it a year and a half, and a 10 year old showing the first few hints of puberty, what is the mom of an autistic tween to do?
First off, you need to figure out your child’s specific challenges and then figure out how to address them. I’m going to share that are particular to autism, and then I’m going to share what worked with my first daughter and how to use them.
Specific Challenges to Training an Autistic Girl about Puberty
Your child may have some or all of these issues:
- Difficulty with transitions.
Transitions are tough for children with many kinds of special needs, but as I’m reading in “The Loving Push,” kids with autism have specific issues with change, including a great deal of fear and a propensity towards saying “no,” even for things they enjoy doing. Needless to say, puberty is a huge change for autistic girls, so you need to expect lots of resistance.
- Speech issues make communication challenging.
Zoe’s speech is improving but she’s far from expressive, and still has trouble at times with responsive language skills. I can tell her about things, but it’s difficult to know if she’s grasping them. (Speech is an issue I need to work on this year as well.) How does your daughter respond to questions about her feelings or pain and other health issues? She will need to be able to communicate things like pain, cravings and other specific menstrual problems to you.
- Sensory issues are a concern.
We’ve battled most of the last months getting Zoe to wear a coat. What will wearing a pad be like for her? How much sensitivity or lack of sensitivity will interfere with a child being able to regularly change her pad or tampon? That’s a huge challenge and concern for me but I’ve successfully transitioned my other daughter with lots of early preparation so I’m confident I can meet these challenges too.
- Delayed potty training.
For my daughter, we’ve conquered these issues with a great deal of teamwork and effort as well as addressing gut issues. This is one less hurdle for us, but you might be concerned if toileting skills have not been achieved or mastered yet.
- Hormonal and other body changes can negatively impact behavior.
Additionally, because I believe that autism is at least partially caused by medical and environmental factor, a child with sensory, hormonal or other chemical/biochemical struggles may find the body’s changes negatively impacting behavior – even if your child is in treatment or detoxing. (I’m there now.) You may want to address this with your doctor or practitioner.
All of this piles up to a whole lot of “ouch,” but with planning, prep and maybe even a dose of courage, if you need it, your autistic daughter can become independent in taking care of her monthly periods.
7 Ways to Prepare Autistic Girls for Menstruation
Where should you begin? That depends on where your child is at with her life skills. Here is a list that can help you prepare her, even if you are at the beginning of this journey.
1. Potty train your autistic tween first.
If your child, like many kids with autism, is approaching her teen years and not yet fully potty trained, create a plan to address this issue first. It doesn’t have to be done first, but it will make period training easier. Here’s what you should do:
- Heal the Gut
Please note that since we have been on the gluten, casein and soy free diet, my daughter no longer had the loose stools that many parent frequently see from their autistic children. If your child still experiences loose stools, potty training will be even more challenging. Secondly, we did the GAPS diet (full only) too so that, along with homeopathy to detox her system, and that went a long way to healing her gut even more. Once the gut is doing better, you can focus on the behaviors.
- Find the Payoff
If you are seeing stool improvement, take that as a good sign, but if your child is still resistant to some or all of the toileting skills she requires, she may have a payoff from having you change her diaper. A friend who is an expert in this area gave me this tip. If changing her diaper involves some kind of play exercise she remembers fondly, then you need to take steps to shut that down. We stopped changing her on the floor, positioned her in the bathroom when she felt the urge and eliminated diapers altogether. It took some time and a few mishaps but I’m calling this a success! What is holding your child up from potty training?
Learn more about potty training for kids who are hard to train.
2. Talk to your child about menstruation.
Now, many kids like mine are not exactly responsive but that doesn’t mean she doesn’t understand you or isn’t listening. For example, Saturday night, I read a psalm to my daughter. She was stimming like crazy and I’m not sure she heard much or even knew what book I was reading from. The next day in the church child care area, she pulled down a dictionary and told the class to listen because she was reading from Psalms! Always talk to your kids at their age level, especially if you suspect they are at their chronological age level with listening or learning skills.
As you talk, you’ll want to keep in mind the struggles she may have with fears. Is she reactive to the sight of blood? Then you’ll need to tell her what is going on with her body, how it will make her feel and that she will bleed (be specific as to where) and how she will need to take care of herself.
You must cover all the topics, from hygiene to cramps to blood, as well as sharing your values on topics like sex and promiscuity. I know that no parent of a girl with special needs likes to think about the fact that their daughter can get pregnant or an STD but she can. In fact, you should also know that rape and sexual assault against people with disabilities is much higher than against people without disabilities. According to the Bureau of Justice, this rate has also increased from the period of 2009-2012,* so now is the time to start to make her aware that her body is her own and no one else should see it, except health care practitioners during doctor visits and you as a parent. Check out my tips for Christian parents on how to talk to your child with special needs about sex.
3. Show your child what a period looks like.
The reality is that some kids need visual aides in the form of the real thing. There is no easy way around this, and even if you’re squeamish or grossed out by this, I will tell you one thing: IT WORKS. I showed Amelia my, um, “business” about a year before she started menstruating – and regularly – and we had zero issues when started. I mean it! It’s probably the parenting moment I’m most proud of in my life.
Now that I’m in perimenopause, this is more difficult than it was when I shared with Amelia but I’m not done yet so I will continue with this practice. In fact, given that Zoe seems to have reached a period where she’s “looking up” to Amelia, I’m wondering if I can’t enlist her aide to show the process to her sister.
What you should be showing your child is both your pad itself (full) and you changing your pad. That means, you can bring her into the bathroom whenever you go even if you are not changing your pad at the time. She can see it heavy and then mild, towards the end.
4. Social stories can help.
With potty training, it was so helpful to have a toileting guide pinned to the wall – for years and years! Create (or ask your school or aides) a laminated guide that takes your child through the steps. You should even do “pad practice,” guiding her how to take pads on and off, rolling them up and sanitary disposal. Additionally, sign up the help of any staff you have, from paraprofessionals, BSC, TSS, special ed or homeroom teacher. We even have our school nurse help out too! It’s likely they’ve seen all this before so they know what to expect and can help with your daughter’s transition to puberty.
Your child needs to know beforehand what she needs to do and has to be reminded over and over. This worked wonderfully with Amelia; I can only hope it works as well with Zoe! But be patient. Kids with autism, like many kids with delays or learning disabilities, need lots of repetition and encouragement before they master something.
5. Books are a great resource too.
There are experts that out there that have written guides, so that you can get proper training on how to guide your daughter without spending a bundle on parent coaching classes. You can purchase the following books that I recommend right through my affiliate links:
- “Steps to Independence: Teaching Everyday Skills to Children with Special Needs, Fourth Edition” can help with potty training, finding the causes of resistance to behaviors and planning for independence in general.
- When Amelia got her period, I bought her a copy of “The Care and Keeping of You,” which is for younger girls. There’s also a version for older girls, and it reviews everything about teen/tween hygiene and body development, with a focus on mainstream mindset (shaving your armpits, using traditional deodorant). It’s good for a child who’s older with a lower reading level – lots of images and charts.
- For younger kids/reading levels, our school recommended “The Girls’ Guide to Growing Up: Choices & Changes in the Tween Years, which was helpful and more juvenile than the “You” but provides clear language and lots of images.
- I’ve just discovered “Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism,” a guide for both sexes that comes with a whole chapter on menstruation and have added it to my wish list.
6. Use nontoxic menstrual care.
Because we care about toxins, and because kids with autism are exposed to so many, choosing sanitary products is very important – and that’s why Natracare should be in your bathroom cabinet. The first time I wrote about Natracare was when Andrea Donsky of Naturally Savvy compared what happens when you set pads made by Natracare and pads made by Always on fire. That was an eye opener. It proved that the proprietary and long list of toxic chemicals that can go into a brand name pad has consequences, while pads that use 100% organic cotton, are chlorine-free, plastic-free and compostable are not only better for the environment, but also better for you – and your child who already bears a heavy toxic insult.
I know what you’re thinking. “What difference does it make what pad I buy?” Well, I will tell you my story. Several years ago, I was using my regular brand – Stayfree – and I noticed that I was feeling irritated – from the day my period started. I don’t usually find pads “comfortable” but this terribly uncomfortable. I asked a friend and she said that she’d heard that from others, though the company gave no indication they had changed their formula. In fact, they irritated me to the point where I thought I was getting a yeast infection! Not only that, but the wings were such an irritation to my skin that I needed to fold back the ends or could end up with a rash.
Do I want my sensitive children near that kind of product?
No way! While I haven’t figured how to teach about tampons yet and reusable cotton products are just not practical for a disorganized teen, Natracare is a great solution. They have a variety of choices that help you help your have a safe period.
You’ll find Natracare in your local health food store, as well as at Whole Foods Markets and Wegman’s, and online. I discovered them today at Wegman’s, in the price range of $4-5 per pack as of this writing and that’s a reasonable investment to make sure my kids are only exposed to safe, organic cotton in their most sensitive areas.
7. Make it easy.
Kids also need to get in the habit of carrying their gear with them. Hopefully, your girls already enjoy carrying purses, so you are ready to create a period pack! You don’t need to buy an online kit to get your child organized in this department. Simply buy a large, pretty pencil case (let them choose it) and tuck it away in their purse or school bag, with an extra pair of panties and the products you pick for them. That’s it! Don’t even call it something fancy, just put together what your daughter needs, making sure to replenish as needed, and teaching her, over time, to fill it too. You may actually want to get a second one that they can keep in their locker at school.
This journey is a challenge, but we are strong enough to help our daughters master this skill too! Now, it’s your turn. What’s your biggest question or challenge in helping your child get through puberty and menstruation?
See Part 2 in this series, “Autism and Menstruation: When Will Your Child Get Her Period?” Check out the downloadable chart to find out if your child is nearing puberty!
*Source: “Crimes Against Persons with Disabilities,” 2009-2012 – Statistical Tables, BJS (PDF)