Over the next few weeks My Family, Our Needs will be focusing on puberty for young disabled people.
We will be featuring practical advice from professionals, for both boys and girls. Including dealing with periods, talking about wet dreams and masturbation. And how puberty can affect young people with developmental delay.
Like most women, I vividly remember the day I started my period. I sat on the toilet and sobbed. Sobbed because I suddenly came to the realisation that this was it for the next forty-plus years and I sobbed because I’d been praying for this day for a very long time. I was 14, in year 9 at high school and all my girlfriends had started theirs some years before me. I’d lay awake at night praying to God to start my period and grow breasts. All the time I would wonder what was wrong with me.
My desire for my period transcended wanting to simply be like my peers. I just wanted to be and feel normal for once as the very word normal had haunted me since I could remember.
A bit more about me
Born with a genetic condition Osteogenesis Imperfecta type 3, more commonly known as Brittle Bones condition, my life had never been what society constituted as ‘normal’. I’d been told by almost everyone in my life that I couldn’t, wouldn’t or shouldn’t. Therefore, I’d convinced myself that because of my impairment I wouldn’t hit puberty and would never become a woman; a woman that could be loved, have sex and have babies.
I suppose I was fortunate to have a mother that was a qualified nurse, we had a good relationship and came from a liberal family, so I wasn’t kept completely in the dark. The snag was that I was the first disabled child my mum had had and she was pretty clueless when it came to answering some of the questions I was so desperate to know. So, we just didn’t talk about certain things.
Yes, my mother should have questioned, challenged and quizzed my physiotherapists, occupational therapists, orthopaedic surgeons or even reached out to the Brittle Bone Society to get the answers. However, as many parents with disabled children eventually realise – hindsight really is a bitch. My mum was learning at the same time as me, it was new territory for her and any information out there clearly wasn’t being distributed freely.
Ultimately, it shouldn’t solely be down to a parent or carer to seek advice. Medical professionals should be much more forthcoming in discussing challenging topics such as sex, relationships, masturbation and puberty. However, I guess our innate Britishness simply gets in the way. As a result, many young disabled children turn into rather confused, alienated and frustrated young adults.
It is common to see someone with a disability as a child. Even at the age of 33, I still get spoken to by some people like a child, patted on the head and looked at with utter shock if I mention anything of a sexual nature or wear something with a bit of cleavage showing. I’m pretty sure my mother wanted me to stay her baby forever, but this attitude is not only dehumanising and insulting, but it is also counterproductive to your child’s development to maintain an independent life.
Not seeing your disabled child like their siblings or others their own age simply reinforces society’s ableist views that disabled people aren’t equal to non-disabled people. It’s imperative to treat them as any other sibling or how you yourself would wish to be treated.
Talking and educating your child on their body and the changes they’ll ultimately experience is also vital. Every disability is different, and what’s difficult for one young person and their family might well pose no problems at all for someone else. But I believe that there are some general things to keep in mind as your child grows up.
First things first – disabled young people are just like any other child or teenager. That’s right, we think about sex, we masturbate and we lust after the opposite sex no matter what our disability looks like. Not talking about it doesn’t stop the hormones from ravaging our bodies and turning us into little demons; you can’t avoid the subject and hope it goes away.
When talking about body parts don’t dumb down the words to describe the anatomy. A penis is a penis and a vagina is a vagina. Using correct terminology is not only respectful, as you are acknowledging that they are turning into young adults and thus should be treated that way, it’s also important for their autonomy. There may be a time when your child visits their GP and wants to discuss issues with their doctor alone. Additionally, young women may need to visit the genitourinary medicine (GUM) clinic for a PAP test or want to discuss contraception. Being able to understand and communicate correctly with the appropriate language really is crucial.
Encourage your child to talk about what boundaries they want to set for themselves. Make sure any external support knows your child’s boundaries too.
Respect your child’s privacy
Privacy is key. Many parents and their disabled children have very co-dependent relationships. This means the young person is rarely alone, and this can be frustrating when you are going through puberty. Some children may need help with intimate care, and when going through puberty this can be a very awkward time for both parties. I would advise the following tips to everyone involved in care that includes carers, personal assistants or support staff:
- Knock before entering private spaces like a bedroom or bathroom.
- Always ask permission before doing anything, for example removing clothes or changing a sanitary towel.
- Take a look at how many people actually need to be present during intimate care. If it can be done with one person, keep it to that bare minimum.
- Communication is essential. Describe every action of what is being done and why you are doing it.
- Give your child some alone time, encourage trips to the cinema or bowling with friends if they are able to.
- Consider whether intimate care is still needed or whether your child can do it independently; or with the assistance of specialist equipment such as a she-wee.
Disabled children often miss out on ‘firsts’. First-class birthday parties, first school dance, first kiss and first time sneaking out to the park to drink cider. I remember never being invited to a sleepover as many of the other parents were terrified of having a child with brittle bones in their home. Instead, my family would have kids over at my house and we’d all sleep downstairs. On my 14th birthday, I was allowed to have boys at my party. My mum and sister actually left the house for two hours just to give us a little bit of freedom. More importantly, she showed me that she respected and trusted me.
I realise it can be hard to let go and scary to give your child freedom and independence. It’s natural to worry more about a disabled child because, let’s face it, the world isn’t very disabled friendly and there are so many obstacles thrown at us on a daily basis. However, when I look at my own experience and my relationship with my mother, there was a time where I hated her and felt so suffocated by her. Her ’love’ was actually the biggest obstacle I faced and I resented her with a capital R! I craved that little bit more time alone or going to the cinema independently or having a shower without her sitting on the toilet next to me, just in case I had an accident.
I know it’s hard but as a parent ask yourself; are you not letting go and encouraging independence for your own convenience?
‘it’s faster if I help or they aren’t doing it correctly’
Everyone’s journey is different, that’s the beauty of disability. We are all unique and our needs very different. Our commonalities are, however, that we all deserve respect, dignity, not to be stereotyped and to take our own path in life independently and with autonomy.
Every child brought into this world will need their parents even when they are adults; it’s a beautiful relationship but it only blossoms if there are mutual respect and communication.