



Sharon Paley happened to read an article I wrote for Learning Disability Practice back in the Spring of this year. We became friends on Twitter, she liked the positivity of Downs Side Up and I greatly admired her work in the intellectual disability field. She introduced me to her former employers BILD (British Institute of Learning Disability) and we've since done some work together.



Sharon and her husband recently wrote this article for Voice, an Australian Magazine for parents of children with Down Syndrome. It deals with the subject of letting go, letting your child with a learning disability make choices, take risks.

This subject resonated deeply with me. I've always been a protective Mum since Mia was born, but when Natty came along with her health issues and vulnerabilities I became more so. My sensible, former teacher's head knows I have to let them try new experiences, often beyond their immediate capabilities and I do this. But often it is my husband shouting 'let go' while every fibre of my human instinct screams no. The following is Sharon and Mark's article from Voice, reprinted with permission. The original photos have been left out and I have substituted moments of 'carefully assessed risk taking' in our journey of parenthood. Believe me, the photographer (me) was shaking, feeling sick with fear, and tear stained in each and every case.





It took 20 minutes to persuade Natty to get in the water with the dolphin but I knew it would be worth it in the end.

Natty's fearless leaping into the sea frightened me more, but just look at her face!





Why take the chance? By Sharon Paley and Mark Wakefield

In this article we look at why it is important to let our children take risks.



Included are some strategies to help you let go and allow your children to try something new.









The problem with protectiveness

It is a natural urge to protect our children whether they have a disability or not: we

give them a time to be back home, we are being vigilant by the swimming pool or at

the beach, and on the list goes. These feelings however seem to be magnified for

parents when their child has additional needs. After all we know what a dangerous

place the world can be, don’t we? Often our worries are more about what we think

might happen rather about what is actually likely to happen.

We take chances (risks) everyday: crossing the road, driving a car or eating that

burger. But these are calculated and based upon our knowledge of what is actually

likely to happen when we do these things. Our worry for our children is that they

don’t recognise additional risks and will make poor decisions because of their

difficulties. However many of these risks are what make life worth living, and with

the right help and support we can enable our children to learn how to make good

decisions or at least support them to do some of the things that the rest of us take for

granted.

How many times have you been disappointed or annoyed by others who they have

made assumptions about your child’s abilities, based on their disability? And yet, by

being protective of our children, we can be guilty of the same thing! Your child has

fantastic abilities and wants to be like any other toddler, adolescent, teenager or adult.

This article is to help you recognise and overcome some of the defensive strategies

we, as parents, tend to develop. While we don’t advocate that we allow our children

to do absolutely anything they like, we can enable them to take positive risk that will

enhance and enrich their lives.



Risk taking that concerns parents





So, what are the sorts of risks parents usually feel concerned about? This list isn’t

exhaustive but parent concerns are often in relation to:

• personal risks, the sort associated with bullying or name calling

• social risks, such as making new friends or being part of a peer group who may

present a risk

• emotional risks, associated with developing strong bonds and attachments to

others or the risks associated with emotional expression for example the ability

to control feelings of anger or frustration in an appropriate way

• emerging sexuality and the desire to have a relationship

• physical risks, such as being injured in taking on a new activity





Positive Risk Taking





Positive risk taking promotes the taking of risks as part of a planned strategy.

However informal that plan is the core aims of positive risk taking are:

• developing a healthy lifestyle

• increasing opportunities to have new experiences be they social, educational or

lifestyle enhancing

• developing communication skills, autonomy and independence

• increasing opportunities for new experiences

• engaging in new social circles, increasing friendships, relationships and support

networks

• developing a sense of personal identity and enhancing self esteem.





Positive risk taking is aimed at ensuring that:





• risk taking is meaningful to that person and is aimed at increasing positive

experiences in their life

• the person will develop new skills which will be valuable to them

• the person will develop their knowledge as a result of taking risk

• the person will increase their understanding of how to manage similar situations

or experiences in the future and be able to problem solve when necessary.





Natty's first ride on a bumpy slide. I was always so afraid of her neck.

I had to look away during the trotting race in the gymkhana!





Risk and Personal Development





It’s important to remember that being able to take risks, manage risks and

unpredictable situations is part of human development. Children may develop at

differing rates and maturity may be delayed for some, however taking balanced risks

is part of growing up and healthy development. All children and young people should

be supported to take reasonable and calculated risks as this will help them to develop

skills that they will need as they mature into young adults. However it is

understandable that when a child has additional needs due to disability, illness or

family circumstances we can find it hard, as parents to take additional risks; we also

see risk where in reality there is little or no risk and the world becomes a dangerous

place of our own invention. Being protective of our child is a natural consequence of

loving them unconditionally, however this can actually be counterproductive to

enabling our child to experience usual life experiences.

To help us take positive risks we must first think about what risk is. Risk is a

continually changing and evolving concept; depending on the outlook and situation

or environment, risk may increase or decrease significantly. For example swimming

in a pool, which we can comfortably stand in, presents a level of risk; but swimming

in open water and being out of our comfortable depth presents a much greater risk,

even though the activity in itself is the same. We should also acknowledge that risks

can be minimised but to eliminate risk altogether from everyday life is impossible. It

is also possible to argue that for some people taking risk is actually exciting and they

are risk takers—for example, people who parachute or engage in other exhilarating

high adrenalin sports often relish the risk element of the activity.





The toboggan run.

I was guiding her down attached to a rope until a crowd formed, along with my husband, shouting 'Let Go!'.

I did. Just look at her face, then my relief and tears of pride.





Strategies Towards Positive Risk





Taking simple everyday risks can seem daunting to many parents, especially if your

child has additional difficulties on a day-to-day basis. It is important to view risk as a

positive benefit to your child and that in taking well thought through and calculated

risks you will be supporting them to develop skills they will need as they develop

and mature into young adults and beyond. There are six simple strategies that will

support you to start taking positive risk with your child:

1. Increase opportunities for your child to make choices. Sometimes you may

not agree with the choice your child makes. It’s important however to let them

start making some simple decisions for himself or herself. As a small child it

may be what they wear, the colour of their bedroom or a meal choice. As your

child grows older the choices that they make will be more personal to them

and they may conflict with your own choices (for them); for older children or

young adults their choices may include how to wear their hair colour, whether

to have piercing, whether to have a tattoo or how to spend their free time. It’s

important to remember that it is their choice and as long as the risks appear to

be balanced it may be better that you step back and support them in the

process of decision making. We often learn most from the decisions we get

wrong of course and that can be one of the most important lessons in life.

2. Support your child to try new things. How often have we tried something new

only to find out how much we enjoy it? Trying new activities or experiences

can be powerful experiences for us and can even be life changing. New

opportunities will enable your child to gain new skills and a greater

understanding of themselves. We often try to protect our child from trying

something new, believing it will be unsettling for them or upsetting, yet being

able to manage new situations and have new experiences is an invaluable

social experience and one which will increase our ability to develop important

communication skills, social skills and problem solving skills. For younger

children it may be the opportunity to visit a friend’s house for tea or go to their

first sleep over. As the parent of an older child or young adult they may be

going to dances, out to concerts or the theatre with friends for the first time or

perhaps having their first independent holiday.

3. Increase independence. Create opportunities for your child to increase their

independence. For very young children taking responsibility for a household

chore, feeding a pet or running a small errand will help develop their sense of

individuality and build confidence. As your child grows older you can build

on these important skills and encourage them to undertake activities with

friends outside of the family home, join clubs, volunteer for an organisation or

try new hobbies.

4. Be a positive role model. Take on new challenges yourself and be a good role

model with regard to taking positive risks. Think about how you can improve

the quality of life for yourself and your family by taking on new activities or

pursuing opportunities. You will on occasions have to manage crisis—of

course your example of being a good problem solver, staying calm and

responding to any difficulties is also important to enabling your child to

develop new skills. Managing crises, even incidental small family crises, is all

about risk management and avoiding more serious consequences. Watching

how adults mange difficult situations or face their own fears can be valuable

for your child. Your child will learn a great deal from simply observing your

behaviour.

5. Support positive interaction, and encouragement. Praise is one way to

communicate to your child when they have done well. A child who feels

valued for their achievements will be better placed to develop a sense of selfesteem

and value, which in turn increases personal confidence and decision

making skills. Praise and encouragement will change as a child matures, for

example you may praise a young child for clearing their dishes after a meal or

helping with a chore, a teenager may receive praise better when they have

been timely with school work or returned from a friend’s house on time. Look

for success and encourage any positive changes that your child makes in

response to your suggestions. Avoid being critical or domineering in the

language you use—for example, replace ‘try it this way’ with ‘have you

thought about this way of doing it?’ Even if you know your child has had

some small help in undertaking a task, praise will go a long way to developing

their independence and ability to take risks in small ways. Praising the effort

and energy your child has put into trying something new or changing a

behaviour is as important as recognising any achievements they make.

6. Increase interaction and communication. It may be that your child has some

communication difficulties. It is obviously important to find alternative ways

to help them communicate with others as ineffective communication can be a

real barrier to trying new activities and therefore impact on risk taking

opportunities. Look for opportunities to increase positive communication and

be sure that everyone who is part of your child’s support network knows how

best to help them interact with others or how to make their needs known.





Peer experience

When thinking consciously about risk taking for your child you must first of all

understand the benefits of the risk taking or the activity and how the possible

positive outcomes will match with your child’s learning and development needs. It is

often best to think about new activities or potential risks in comparison to

experiences that your son or daughter’s peers, who do not have Down syndrome,

will experience. Are their experiences broadly similar, if they are not why is this the

case is and what can be done to support your son or daughter to increase

opportunities for them? The benefits of positive risk taking for your child will be an

increase in:

• confidence in their own ability and capacity to try out new challenges even if

they do not always succeed

• the sense of control they have in life, reducing feelings of helplessness or

victimisation and segregation from others in society

• participation as risk-taking develops personal skills for managing anxieties and

overcoming fears

• opportunities to practice important decision making—children often have no

voice of their own and risk taking is an opportunity to develop skills of

communication, interaction and increased autonomy)

• the development of a sense of individuality and increased personal knowledge

• personal motivation—risk taking enhances problem solving skills and leads to an

increased sense of personal achievement.





Weighing it up

We can learn nothing from playing it safe: by definition, in taking risks we will

sometimes fail. Risk taking in life is beneficial and if we do not take risks we will

stop learning and important developmental opportunities are taken from us.

Arguably, taking positive risks and supporting your child to take positive risks is an

important aspect of their development, education and social learning. Don’t feel

afraid to take risks, don’t be afraid to support appropriate risk—risk is an educational

and life learning opportunity. Taking risk is to make a statement toward growth,

lifelong learning and increased independence.













Finally a short video clip of Natty on her very first solo Zip wire ride.

We had done it a million times holding her and we were sure she knew not to let go.

That said I still felt physically sick as she did it.







Sharon Paley and Mark Wakefield are husband and wife. Sharon has worked in

the intellectual disability field since 1982 and is widely published in the UK. In

2011 Sharon received the prestigious Florence Nightingale Scholar award.

Mark qualified as a teacher in the UK in the early 1990s and specialises in the

development of individualised packages of support for people, carers and