When a child is small and dependent on his/her parents it is a natural state, as parents we love, look after, feed, clothe, nurture, play with and teach our young children. That is how it is with your friends, family members and neighbours who have small children. When your child with an intellectual disability is a baby there is no difference in his or her dependency level compared to typical children their age. As they grow older this changes however. After 18 when their typical peers start venturing into the great big world this dependency is more evident than ever. Some of the issues that affect adolescents and adults with Down syndrome and their families include transition from school to workplace, employment, housing, sexuality and specific health conditions that are associated with Down syndrome.

While all of us handle change in our own way, major transitions often give rise to conflicting feelings, anxiety and stress. For example, we might look forward to new experiences, yet worry about the unknown. Taking adequate time to prepare and planning well are the best ways to alleviate the stresses that can accompany transition. The stress and conflicting feelings when it comes to transitions in the life of the person with Down syndrome the whole family is affected by these conflicting feelings, as the change in the life of the person with Down syndrome means a change in the family dynamics as well.

Tips for easing the stress of transitions:

• Admit that you feel vulnerable which may include fear, anxiety, or sadness along with excited anticipation.
• Become pro-active in the change process. Those who are empowered look for opportunities to make things better. Victims sit back and worry about what will happen from a passive perspective.
• Know that feelings are not set and you are never stuck with just one feeling. In the same day we may feel afraid and optimistic and excited about the same circumstances. Focus on the positive emotions.
• Trust yourself based on small or large successes in your past. Ask yourself: When have I managed change before? How did I do that? How did it turn out?
• Try to avoid obsessing about the future. The solutions for how you feel now are usually in the present.
• When it seems that your future is dependent on the actions of someone else, you might be inclined to obsess on “What ifs?” A better alternative is to choose to be where you are. Make the moment you are in the most important thing in your mind.
• Take positive action to get back on track. Stopping certain thoughts isn’t easy without a few tools. Doing something totally different like putting on music and dancing in your kitchen, going for a walk in nature, drinking a big glass of water, opening up your posture (stand and stretch your arms stretched out to each side) and breathing. You can also read something short and inspirational that will steer you in a better direction.
• Sometimes our minds feel like a runaway train. If you can quiet your mind briefly, you will notice there is always a fork in the road. One option is to let your anxious thoughts hijack your brain (the negative path) or you can find something to be grateful for or you can believe that things have a way of working themselves out (positive path) and choose the positive thoughts.
• Asking for help when you are vulnerable works much better than being angry, irritable, and critical which pushes people away. Be aware that you may be spreading negative energy to others when you are fearful and obsessed.
• Many people can lessen their fears and stress fairly quickly with meditation, prayer, or by helping someone else. In other words, get out of your own head

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WHAT WILL CHANGE AFTER HIGH SCHOOL?

New Zealand views transition for young people with intellectual disabilities as a priority starting with the transition planning at the age of 14 years (Bennie, 2005). In South Africa we are not as fortunate yet as Transition Planning is not part of the School curriculum yet. This age represents the developmental stage of adolescence (Weiten, 1998) which in itself presents the child and parent with many challenges.

Introducing transition planning at the onset of adolescence could be beneficial in the sense that parent and child could form a close relationship while discussing future options. Starting on the transition plan early also means that there will be sufficient time to make adjustments if need be.

Many things will change for school leavers and their family members.

For the person with intellectual disability it could be things like:

• Living without the school routine they are used to.
• Realising that they are not moving on and out like their siblings.
• Realising that this change is not short term.
• The loss of friends.
• The loss of mentors and teachers.
• The loss of ‘my own space”
• The loss of independence
• The loss of extra-curricular activities and therapies
• Exposure to new things, people and challenges

For the family members it could be things like:

• Loss of a support system and individuals who knew and understood your child
• Extra financial burden on the family
• Dealing with your child being at home more and helping him/her settle into a new routine.
• Keeping them safe
• Arranging for your child to socially interact with peers
• Dealing with feelings of loneliness, hopelessness and helplessness
• Dealing with the emotions of your son/daughter and other siblings
• Finding a new routine and rhythm

WHAT IS TRANSITION PLANNING?

Transition planning is looking towards the future of an individual and envisioning all the skills and preparations that will be needed to lead the most fulfilling life possible. Looked at in this way, all training and education received during childhood and adolescence are part of transition planning. At 14 it does not have to be very specific, it has to broadly look at the individuals needs and wants to develop his/her full potential in order to contribute to society and live a full life.

Transition planning should be a right that exists for all learners with disabilities. It is important that individuals with Down syndrome be as involved as possible in making decisions about their future. Transition goals should reflect a student’s interests, abilities and dreams, and the plan should outline specific objectives to help him or her achieve those goals.  Successful transitioning will depend on a good understanding of the individual’s personal strengths and interests as well as knowledge of what options and services are available in his/her community.

WHAT OPTIONS ARE AVAILABLE AFTER HIGH SCHOOL FOR INDIVIDUALS WITH DOWN SYNDROME?

There is no easy answer to this question. Location and your financial means plays a big role in making use of the options available. There are opportunities for individuals with intellectual disabilities after school, most of these opportunities however, are available in or near bigger towns and cities. The other obstacles are cost and public transport or rather the lack thereof in South Africa as well as the safety of individuals making use of existing public transport.

The options available are skills training, working in a protected work environment or working in the open labour market – either supported or competitive. Today, there are more opportunities than ever before for individuals with Down syndrome to pursue goals, but it is still not enough and not accessible to all individuals with intellectual disability. The only option for many young adults when they finish school is to stay at home without the prospect of work. This should not be the end result for the individuals who want to work. For twelve years they were part of society, they learned skills, was part of a group, played sports, had friends and people besides their family contributing to their lives.

It is therefore important for individuals with Down syndrome and their families to begin thinking about one of the most important and probable most stressful transitions of all — the move from high school to life after high school. Rather start making plans earlier than later.

The period of time following high school graduation can present many challenges. But it can also be a time of excitement, productivity and great satisfaction. Planning for this transition from an early age can help the individual with Down syndrome mature into an adult who is as independent as possible. A well-developed transition plan ensures that the student has steps in place to reach his or her goals after high school.

Read more: Skills development and  Employment