Parents and professionals

Parents and professionals

Welcome to the parents and professionals zone.

A place just for parents and carers, with practical information to help you support the young people in your life.

Come armed with a paper and pen, as this area holds the key to all those questions you wish you had answers to.

Career advice for your job hunting journey

Eva Harrison from Career Seekers Direct, shares some advice for job seekers.

Career advice for your job hunting journey

Eva Harrison from Career Seekers Direct, shares some advice for job seekers.

Check out her video below for hints and tips on writing a killer CV and getting the best out of an interview.

Family Fund

Your Opportunity: Help for 18-24 Year Olds

Information on Family Fund’s Your Opportunity grant that supports disabled and seriously ill young p…

Your Opportunity: Help for 18-24 Year Olds

Family Fund

What is Your Opportunity?

Family Fund supports families living across the UK who are who are raising a disabled or seriously ill child or young person. As part of our grant support, we run a small scheme called Your Opportunity that supports disabled and seriously ill young people aged 18-24 years old who are living at home.

Who can apply?

Your Opportunity has very limited funding and we accept applications from families on a first come, first served basis.

We can only process one application per household, so if you have already received a grant from Family Fund in the last 12 months, or are awaiting a decision, we won’t be able to accept an application to Your Opportunity. This is to help us reach as many families as possible with the limited funding we have.

Please note that young people cannot apply to Your Opportunity independently – the application has to come from the parent or carer, and you can only receive a Your Opportunity grant once.

In order to apply, you need to meet our criteria, which can be found on our website

How can I apply and what can I apply for?

If you’re thinking of applying to Your Opportunity, you need to complete a paper application form and a Your Opportunity declaration form and send them back to us. You can download an application pack to print off at home, or you can order a free application pack to be sent out to you. 

We can help with a range of grants through the scheme, from laptops and tablets, to grants for clubs, sports equipment, musical instruments and more.

Please note, we can’t consider requests for family breaks or a holiday.

The difference a ‘Your Opportunity’ grant can make

Jacob is 19 years old. He is autistic, and has dyspraxia and Ehlers-Danlos syndrome (EDS). Jacob’s dad, Joseph, tells us: “It can be a struggle. Due to his conditions, we have to remind him to do certain things every day, such as brushing his teeth, having a shower or changing his clothes.”

“Everything we would usually take for granted, we constantly have to tell him to do. It’s like you have to start all over again. It can be very confusing for him sometimes, and he can get frustrated because he doesn’t understand why we’re telling him what he needs to do.”

Joseph has applied to Family Fund for a number of years, and it was through applying that he found out about Your Opportunity.

“I applied for a recreation grant so we could purchase a tent for Jacob.”

Joseph explains that camping is a great space for Jacob to be independent and have some freedom.

“It also gives him the option of going away with his personal assistant (PA). They can go camping together and I know he’s in a safe environment with them.”


Connect with us

Want to know more? You can visit us at our Family Fund website, call us on 01904 550055, email at info@familyfund.org.uk or join in the conversation on Facebook, Twitter and Instagram.

Family Fund logo
Ian and his daughter Gayle

Having Down’s Syndrome should not be a barrier to home ownership

We hear from Ian about his daughter Gayle and how he and his wife have peace of mind knowing she liv…

Having Down’s Syndrome should not be a barrier to home ownership

Ian and his daughter Gayle

Gayle is 40 years old and happily lives in a home she part owns, with two other shared owners, close to her Mum and Dad.

Here, Ian tells us about his daughter Gayle and about how he and his wife have peace of mind knowing she lives near them but in her own home.

How it all began

Gayle attended a special needs school in West Oxfordshire before attending primary school and the local comprehensive school where she was in the special education unit. She then went on to college part-time to learn independent living skills. At home she had two brothers, one younger and one older. When they left home for their further education we began to worry that Gayle was getting a bit bored just being at home with us. We started to think in earnest about her next step and a possible long-term living solution that would suit us all. It never crossed our minds that she couldn’t do it.

Gayle needed to find a long term housing situation and so, with two others, also with Down’s, our plans began to take shape.

In 2001, we came across Advance Housing and we realised there was a possibility, through the HOLD (home ownership for people with long term disabilities) scheme, that Gayle could part-own her own home. It seemed incredible but as we looked further into this government backed scheme it became clear that it could work for us all.

What is HOLD?

HOLD is a route into home ownership through a government backed scheme (England only). As a specialist provider of housing and support for people with long term disabilities and mental health conditions, Advance has supported more than 1,000 people to part-purchase a home of their choice from the open market.

Who is eligible? If you are over 18 years old, have a recognised long-term disability and can fund a deposit and legal fees of around £15-20k, this could be the programme for you.

How does it work? Advance buys the property you choose and then sells a share of the equity to you under the HOLD shared ownership scheme. Shared Ownership is part buy/part rent. This means you can buy a share of the equity of a house or flat. Advance will rent their share to you and will provide certain maintenance and repairs to your property to make sure it stays in a good condition. This is covered by a service charge to pay for essential repairs and maintenance on the property over the time you own it.  Over time you have the option to increase your percentage share (stair casing) in the property if you wish.  

HOLD worked for Gayle and her friends

It took two years of careful research and preparation, with Advance working alongside us every step of the way.  In 2002 a four bedroom house close to where we live was identified as being suitable. The two other families were also keen and along with Advance and the support team they worked together to move the three shared owners into their new home in January 2003 where they receive 24/7 support. 


Find out more about Advance Housing on their website. For more information on HOLD (home ownership for people with long term disabilities) click here.

supported internships

Supported internships

A presentation from Hereward College on their Supported Internships.

Supported internships

supported internships

Supported Internships are for young people aged 16-24 with additional needs who want to move into employment and need extra support to do so.

In this presentation from Hereward College, they explain how their internships work, and what young people can achieve from the scheme.

hft smarthouse

Have you checked out Hft’s Virtual Smarthouse?

The Hft Virtual Smarthouse showcases how technology can discreetly fit into and enhance the quality …

Have you checked out Hft’s Virtual Smarthouse?

hft smarthouse

Technology can play a key role in supporting people with learning disabilities to increase their independence, safety and quality of life.

Hft’s dedicated Personalised Technology team works with people to listen to the daily challenges they might face, and identifies technological solutions that give them more independence and control – from special plugs that stop a forgotten bath from overflowing, to full telecare systems that keep people safe at home. 

This support is particularly important during the Coronavirus pandemic, when staffing levels can be limited and people might be struggling with social isolation. Personalised technology can play a key role in helping to maintain people’s independence and safety, as well as helping people to stay in touch with family and friends.

How the Virtual Smarthouse can help

The Hft Virtual Smarthouse showcases many of these vital items, demonstrating how technology can discreetly fit into and enhance the quality of people’s lives. The resource has been designed to raise awareness for people with learning disabilities, support staff, families and professionals on the simple, low-cost solutions available and what outcomes this technology can help to deliver. While it does not include all technologies, it can be used as a starting point to consider technological solutions to day to day challenges.

The user navigates around the house and is able to click on various glowing items placed in different areas of the home – for example, at the front door you will find a finger print lock, while anti-flood devices can be found in the bathroom. Selecting an item brings up information about the device, the outcomes it can help to achieve and non-supplier-specific links to where they can be purchased.

To visit the Virtual Smarthouse, visit https://www.hft.org.uk/smarthouse/


Hft is a national charity supporting adults with learning disabilities to live the best life possible. The charity supports over 2,500 people with disabilities across the country. Hft supports people in all areas of their life: from developing practical skills and connecting them to their community, to helping them to get a job and introducing them to technology that can help them to live as independently as possible. Visit their website for more.

Aimee Mann

Emotional resilience: Prioritising self care

Aimee is a mum to three children, a blogger, Podcaster and Mentor for parents, like her, whose child…

Emotional resilience: Prioritising self care

Aimee Mann

Aimee is a mum to three children, a blogger, Podcaster and Mentor for parents, like her, whose children have additional needs and disabilities. Aimee runs live and virtual workshops focusing on advocacy and prioritising self care.

Aimee’s oldest son, Freddie, has a rare de novo genetic condition and had a stroke before birth, resulting in a severe learning disability and a wide range of physical and mental disabilities.

This film was made especially for the My Family Our Needs Transition Event Online, all about building your emotional resilience and why it’s so important as parents of kiddos with additional needs and disabilities.

empty nest image

The empty nest for parent carers

As an autistic mum, feelings take me about a year to process. In real time, I may come across preocc…

The empty nest for parent carers

empty nest image

As an autistic mum, feelings take me about a year to process. In real time, I may come across preoccupied, restless or simply aloof to the bigger matters at hand. 

When the penny drops as to what those presentations of my behaviour means, it’s crystal clear why such reactions existed and, right now, it’s a confusing transition towards empty nest syndrome. 

Don’t get me wrong, my youngest still needs much support 24/7 with home education and care. Which, I suppose, made me shun the idea I was experiencing a grief that all parents feel when their children, literally in a blink of an eye, transform from teenagers to adult women. For parent carers, however, who have been warned year after year that independence should not be an expected long-term goal, it slaps you in the face when it happens. Not because it’s hurtful or sad; it’s joyous and pride ridden. It’s just unexpected.

Transition as a parent

We speak so keenly about the transitions for autistic children from primary to secondary school, from college to University, University to employment. Yet we seldom discuss the big life transitions for autistic adults. 

Parenting children with a diagnosis is much unlike any other parenting. Project management is designed to be a marathon of batons and relays, not a sprint to the finishing line. Participation is in it for success day by day, 24 hours by 24 hours . 

But those 24 hours turn into a week, a month, a year and then a decade or two without even coming up for breath.

Well-meaning professionals let you know how to limit your expectations; and we in turn limit our expectations of life and don blinkers to focus solely on the here and now. Because of this, no-one prepares you for the empty nest – and how that will feel.

For those reading at home who still feel saturated with responsibility, please know that I still have those feelings and duties too. My youngest is only approaching teen years. I’m still home educating and juggling being the sole bread winner and carer not entirely living the Bridget Jones single woman lifestyle yet. 

Reflecting

I am at the odd stage whereby one child (I can’t believe I still insist on saying child ) is 22; the middle daughter is now starting university and spending her time with her long-term boyfriend (who is an absolute dream, I’m so lucky she chose well!). Yet I am experiencing empty nest syndrome mixed with the dynamic of looking at my youngest with this new found knowledge of what comes next, and what comes so fast – without me realising; now there’s time to think about myself.

This should be a relief. I’ve often imagined, just like so many younger mums do, the future me as a still 30 something with my child raising days mostly completed.

As a teen mum I had imagined I might be a glamourous woman in a suit with a sports car, a shiny watch and high heels. 

The reality is that I’m a woman who prefers a train ride with a good book or a notepad, a dog walk over a drive, jeans, t-shirts and wellies as opposed to a suit and high heels and I try to count the day in happy memories rather than minutes.

I tweeted about this whilst writing and the BBC award winning writer (and awesome autistic woman!) Alex Clarke replied in solidarity saying it’s like ‘the cake we promised to eat later.’ Alex is so eloquently right and as we were both teen mums, her tweet really resonated with me. However with age, taste buds change and now I have less desire for the cake which feels fleeting and bad for me. Now the savoury seems more appealing. I see my friends of the same age only just starting their families or finding Mr Right to marry and be a dad to their children.

I’m 38 and when I decide to date again I’ll be looking for the right man to not only be by my side from here on in but also be the grandfather to my daughter’s children, not our own children.

All the emotions

I’ve always been one step behind or one step ahead; never perfectly on time. It feels alien to hear women the same age as me discuss putting a deposit down on a nursery place when I’m selling up the childhood home to help my kids put down a deposit on their own house. 

I thought this moment in time would be a relief. Yes, it’s a joy and a privilege but there is also an element of grief. 

Worst of all, knowing so many women personally and professionally that have lost their children to illness (mental health or otherwise), the stigma to talk about this feels so entirely selfish. I know how lucky we all are to have this new chapter ahead that and that goes without saying. 

But nobody told us. Everything we were told was to prepare for lifelong caring. Nobody told us that the determination and care might have this result. The empty nest was never in the plan; it’s a beautiful surprise but a surprise nonetheless. 

Going back to my Twitter exchange with Alex Clarke, she said ‘it’s like the Hokey Cokey,’ and, again, she was right. After all, if you put your whole self in you have to learn to somehow, one day, put your whole self out. 

Carly x

boy with down syndrome holding phone

Puberty in boys with additional needs

We talk masturbation, wet dreams and erections. Giving your disabled son information and support is …

Puberty in boys with additional needs

boy with down syndrome holding phone

As our puberty series continues, we shift the focus to boys heading towards that significant stage in their young life.

It can be difficult for Mums, Dads and carers to talk about, but Kate E. Reynolds is back to stress that knowledge is power. Even though it can be embarrassing to talk about personal things, giving your disabled son information and support is invaluable. As Mum to a son on the autistic spectrum and who has learning disabilities, Kate has a wealth of experience.  

As far as sons are concerned, parents usually focus on three aspects of puberty: masturbation, wet dreams and erections. All of which induce a level of embarrassment and tend not to be discussed. So, let’s look at them here.

Masturbation and understanding his body

Masturbation is sexual self-touch, which in males can involve touching the penis and sometimes other erogenous body parts.

It may involve ‘dry humping’ when the person may rub themselves on the floor/furniture or other people to rub their groin. Sometimes objects may be used, such as clothing, marker pens or children’s toys, for stimulation. Difficulties arise because injury may occur or even loss of the object inside the individual, requiring hospital treatment.

Despite a myth to the contrary, girls and young women also masturbate, often with regularity and, if not educated, in public. You can read more about puberty in girls with additional needs here.

An area of concern, particularly for mums once they have wrapped their heads around the idea that their child is masturbating, is the degree of frequency. For many mums, once a week might seem plenty, but for individuals going through puberty (and often beyond) once a day might not even be sufficient. It’s a very individual thing.

Perhaps the way to work out if there’s an issue is if the young person can’t focus on other areas of life for wanting to masturbate. There could be several reasons for this, such as an inability to reach climax (or ‘cum’). This may be due to poor technique or side effects of medication. If this is the case, he will feel constantly frustrated and unable to focus on other things. Visuals and sometimes providing lubricants can tackle this.

The young person may have an infection e.g a urinary or a fungal infection, causing him to continually need to touch his groin. It’s important that infections are treated, partly for the obvious relief of distress but also to assess how the infection happened and ensure it’s not due to sexual abuse or using objects inappropriately for stimulation. Sometimes reaching for the groin may be due to issues with underwear, which may be too tight, bunched up or itchy (especially for those who have sensory issues).  

Wet dreams

Contrary to the beliefs of many mums I’ve met, wet dreams aren’t wilful acts. They happen generally at night while the young man is sleeping without necessarily any sexual thoughts or dreaming. It can be distressing to wake up with a soaking groin and your son may be confused and think that he has wet the bed by weeing. Our sons need to have the difference explained and reassurance given that this happens to most young men so they’re not afraid to go to sleep. Depending on his cognitive abilities, you can teach your son how to clear up bedding or change his clothes and shower/bath in the morning.

Erections

Erections may be caused by sexual excitement but sometimes they just happen. They can distress our sons, who may not like the feeling of spontaneous movement and may worry that their penis won’t ‘go down’.  It is really important to equip your son with the knowledge about what to do if they have an erection in public. Key components might be to cover the erection by sitting down so it’s less obvious, holding a book over the groin or even walking to the privacy of toilets until it has gone (but never to masturbate in public toilets to relieve it).

Clothing can be carefully chosen, so dark trousers will cover any leakage of semen (which can spontaneously occur with erection) better than light clothes. Fitted underpants lessen rubbing which might bring on erections. A long T-shirt over trousers can cover the groin just in case.

Thinking about dull things may help reduce an erection in typical young men but this approach may not be effective in young men with developmental delay. However, a book or food may distract some young men sufficiently for the few minutes it takes for an erection to subside.

Public space and private space

This is arguably the most important lesson for our sons to learn to prevent them inadvertently becoming embroiled with the law by, for example, masturbating in a public place. The only private place where ‘private time’ or masturbation can happen is in his own bedroom. If your son can understand the difference between the family bathroom and any other lavatory, such as school toilets, he can also be taught that the bathroom at home can be used for private time.

Messages about where is public and private can be reinforced by visual prompts (where needed) or regular use of the words. So as parents we might state ‘we’re in the swimming pool, this is a public place.’ Visuals can also be used to redirect a young man to his bedroom if he starts to self-touch in public areas of the house, for example.

Importantly, our sons have to know that using any form of social media is public; even if it is used in a private bedroom. For example, webcams and photos posted online are all public and anyone can access them.

It’s a myth that masturbating in public is part of disability that should be accepted. Most young people can be supported to understand that sexual self-touch must only be done in one or two private places.

Perhaps the key is to support our sons by giving information in preparation for changes and having a dose of relaxation about the more embarrassing elements of puberty. Our sons may be reassured if they understand that all males have these experiences, especially if that message comes from a significant man in their lives, such as their dad.

Visit the website www.autismagonyaunt.com for more information and resources (you can purchase Kate’s books there). You can also read more about Kate and her work on her Twitter page, Facebook page and her LinkedIn profile. If you’ve found Kate’s Puberty in boys piece useful, read Puberty and periods in girls with developmental delay here.

What are relationships book cover
Personal space book cover
smiley teenage girl with down syndrome

Puberty and periods in girls with developmental delay

Tips and practical advice you can use at home when it comes to explaining puberty and periods to gir…

Puberty and periods in girls with developmental delay

smiley teenage girl with down syndrome

This month, My Family, Our Needs is focusing on puberty in young girls and boys with additional needs. If you haven’t read Samantha Renke’s personal story of puberty yet, you can catch up here.

Here we have some practical advice and ideas to introduce at home for young girls approaching puberty from Kate E. Reynolds.

An author, public speaker, PhD researcher and consultant working in relationships and sex education and the impact of autism on girls and women, Kate has had eleven books published. More importantly, Kate is mum to a teenage son on the autistic spectrum who has learning disabilities. This has given her invaluable insight when it comes to supporting parents and carers.

Next week, Kate will focus on puberty in boys with additional needs. Make sure you stay tuned for that.   

Although some children with additional needs have delays in physical and social development, it’s rare that they have delayed puberty. Despite this, research shows that parents delay giving their children information about sexual education, usually until they experience issues or problems. These could be things like masturbation in inappropriate places or discovering their child is sending ‘nudes’. Ironically, these behaviours often relate to lack of education.

When to start talking about puberty

The short answer is: the sooner, the better! This doesn’t mean bombarding a five year old with the detail of tampons but just starting to cover the basics.

Public and private places, behaviours and conversations

It’s a good idea to change nappies or help toddlers to use a potty in the lavatory and naming it as a ‘private’ place, rather than doing either of these things in the public areas of the home such as the lounge. Use ‘knock and wait’ signs on private doors and talk about  the difference between a private or public place. Limit nudity to private areas and encourage covering up between rooms, such as the bathroom and bedroom. It may also be a good idea to limit the age that children are sharing baths. By around 7 years of age most typically developing children will be asking for some privacy.

Personal space and  appropriate touch

Our children need to be aware when others touch them inappropriately as well as ensuring their own behaviours are socially acceptable. This is sometimes undermined by the myth that all disabled people are  ‘huggy’ (notably those with Down’s syndrome) and this is part of their disability. Ensure all family and friends agree to support your house rules when it comes to having different greetings for different people (hugs for close family or high fives for friends).

Puberty

Girls start the process of puberty from 8 to 13 years with physical changes. These usually happen over four years in phases.

First phase:

  • Breast ‘buds’ will grow which may be tender. If your daughter has difficulty communicating how she feels, you may notice her mood altering if she has discomfort in her breasts or be unwilling to let you help her wash her chest. Anticipate this by giving simple pain relief.
  • Pubic hair starts to grow,  as well as more hair on the legs and arms. For disabled girls with sensory issues, this growth may be uncomfortable to experience; especially if they haven’t been prepared for the changes happening to them.

Second phase:

  • Breasts continue to grow. Whatever additional need your daughter may have, she can still be involved in decisions about bras, being measured professionally to ensure comfort and making her aware that all women wear bras.
  • Armpit hair develops and pubic hair becomes coarser and sometimes curlier.
  • Periods usually start about two years after this but girls can be as young as 8 so you need to prepare young girls early.
  • Weight gain is to be expected as a young woman’s body shape changes. Her hips will become fuller and more fat is laid on the arms and thighs. Try to convey this as growing into a woman, like other girls. Often girls with additional needs want to be like other girls.
  • Girls sweat more, acne may occur and she may notice other things going on with her skin, such as black/whiteheads and spots forming.  She may also experience white vaginal discharge. It’s a good idea to establish a hygiene routine in early childhood which can be continued in puberty.

Explaining periods practically at home

Here’s an example of how to use key principles to teach about periods and how to manage them.

1. Be hands-on

  • Show your daughter what sanitary pads and tampons look like.
  • Use red food colouring or coffee to replace blood at different stages of a period, then drop some in the middle of a sanitary pad.
  • Mimic a pad on day one, day two as heaviest then coffee for the end of a period. You can do the same for tampons, showing that they only expand a certain amount.

2. Be visual

  • Draw lines on underpants showing where the pad sits.
  • Mark periods on a calendar so that your daughter knows when to expect them.
  • Show photos of different types of pads and tampons, use pictures to show the inside of a woman and how a tampon fits into the vagina.
  • Reassure your daughter that tampons cannot be sucked up into her body, but she must remember to remove a tampon regularly. You could introduce aids to help her remember to do this, including alarms or timers or introduce a rule around how often in her daily timetable to change her pad/tampon.

3. Demonstrate

  • If you feel able to do so, take your daughter into the lavatory with you and show her a used pad and how to replace it.

4. Prepare

  • Before her periods start, have your daughter wear a sanitary pad with fluid on it so she adjusts to how it feels.
  • Practise using the specialist bins in public spaces.

5. Think outside the box

  • Use different methods and learning opportunities to reinforce messages about periods.
  • This could include using books and online footage about periods, as well as talking about periods in private with your child (remember this is a private subject, in a private place to reinforce the ‘private’ message).

6. Teach self-care

  • Teach your daughter how to manage the unpleasant symptoms of periods by getting plenty of sleep, drinking lots of fluids, using hot water bottles, warm baths or suitable pain relief.

7. Be positive

  • Periods are part of ‘normal’ maturing and growing into a young woman.

8. Pregnancy

  • Do mention pregnancy – some parents are tempted to ignore the fact that periods herald a time when a  woman could get pregnant. This could be because they feel the young person may fixate on pregnancy or be afraid of having a baby.
  • Keeping a young woman in ignorance doesn’t prevent pregnancy, whereas equipping them with information gives them knowledge, understanding and power of their own bodies.

9. Frequency

  • Remember to stress that periods come every month – they’re not a one-off event!

10. Choose the right products

  • Tampons are a possibility for young women with developmental delay.  Their use will depend on manual dexterity, ability to relax to insert a tampon, ability to co-ordinate and cognitive abilities.
  • For some young women, tampons offer a way of managing sensory issues associated with periods and passing blood or continuing a routine of sports or activities.

11. Involve your child

  • Involve your child in choosing sanitary pads (not towels – this term may be confusing) and tampons.

12. Boys

  • Remember that boys and young men also should know about periods and why women have them.

And finally, don’t fear or ignore puberty – celebrate it!

Visit the website www.autismagonyaunt.com for more information and resources (both Kate’s books can be purchased there). You can also read more about Kate and her work on her Twitter page, Facebook page and her LinkedIn profile.

Personal space book cover
What are relationships book cover

Puberty: anatomy and autonomy

A personal account from Sam Renke on anatomy and autonomy as a young disabled person, sharing her ex…

Puberty: anatomy and autonomy

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.

Encouraging independence

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.

Practical advice

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.

Independence

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’

The Journey

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.

Benefits and finance

Unsure what benefits you and your family could be entitled to? Find information on Disability Living Allowance, Attendance Allowance, Direct Payments and more.