There is still much progress to be made, but with the positive developments we’ve seen in recent years, you have every reason to be optimistic about your baby’s future. For example, today the majority of children with Down syndrome are included in regular education classrooms alongside their peers. Research has shown that this inclusion has positive effects on the academic and social experiences of students with and without disabilities. There are even individuals with Down syndrome who graduate from high school and go on to college. In addition, we are seeing an increase in the amount of meaningful, satisfying employment opportunities available to people with Down syndrome and more options for independent living. Many people with Down syndrome are employed, live on their own, and some even get married. The fact that these options are available today gives us reason to believe that for the next generation of people with Down syndrome – including your child – the future is even brighter.
A FUTURE FILLED WITH PROMISE
Your child has been born, or is about to be delivered, into a world that offers more opportunities than ever before for people with Down syndrome to reach their full potential. Every day we expand our knowledge of how individuals with Down syndrome learn and the best ways to support their development. Scientific research is constantly yielding new information about the causes of Down syndrome and associated conditions. Local and national advocacy organisations are working tirelessly to promote legislation that advances the rights of individuals with disabilities. All these efforts have opened up many doors for people with Down syndrome to pursue their dreams. This section discusses looking ahead to the future.
HOW CAN I GIVE MY CHILD THE BEST CHANCE AT A PROMISING FUTURE?
No one can tell you your child’s potential, but there are many things you can do to give your child the best chance at a successful and happy life. First and foremost, your child will need lots of love, affection and support for healthy development. Like all kids, children with Down syndrome have their own unique talents and abilities, and it is important to recognise and celebrate those accomplishments. Your child will likely receive early intervention services, including physical, speech and language, and occupational therapy. Still, instead of emphasising what your child can’t do, focus on what he or she can do!
This attitude is common with typically developing children, and it should be no different for kids with disabilities. Of course, babies and children with Down syndrome have certain developmental challenges that need special attention. In addition to providing your baby with varied experiences and constant opportunities for growing and learning, you’ll also want to learn as much as you can about Down syndrome.
There are many successful strategies for addressing specific challenges, but often, it’s up to parents to track them down. Fortunately, many organisations and resources are available to you that can provide information on specific topics.
Although your child with Down syndrome may need more attention from time to time, do your best to treat him or her the same as your other children and have similar expectations. It’s important to remember that inclusion starts in the family. By living life and enjoying the same activities that other families enjoy, you will be teaching your child that he or she has the same right as everyone else to live a full and active life. You will also be showing others that people with Down syndrome are more like the rest of us than they are different.
As a parent, you are a natural advocate for your child. You will probably come across many people who do not know very much about Down syndrome, and you’ll be able to share information with them about your child’s abilities and the potential of people born with this condition. As you become more comfortable in your role, you may find that you want to advocate for people with Down syndrome in more formal ways, and there are opportunities to take your commitment to the next level!
Every age and stage will have its own challenges, difficulties and triumphs. The child with Down syndrome will probably need more help to reach milestones and these may be reached later than his/her peer group. The developmental difference between your child others of the same age becomes more apparent during the toddler years. As you have realised by now your child will however reach most of the milestones. Do not measure your child against other children. He/she is unique with his/her own abilities. The emotional milestones also need to be reached, even though it might be a little bit later than in A-typical children so the ‘terrible two’s’ will most likely come a little bit later but rest assured you will have to work through this stage.
Never underestimate your child’s ability to learn, do not expect too little of him/her. Children with Down syndrome often struggle with expressive language. The fact that they cannot express themselves well or at all, leads people to believe that they do not understand what is being said to them. This is however very far from the truth. Children with Down syndrome almost throughout their lives have a better grasp on receptive language than the expressive. He might not be able to express his need for a cool drink, but if you asked him to hand you the cool drink from the fridge he will understand you.
Part of the challenging behaviour in this age group and even beyond is the fact that they cannot always make themselves understood. This leads to frustration and can lead to anger, tantrums and unacceptable behaviour. Discipline and routine is key and will make every bodies lives so much easier. Develop your child’s listening skills, and make sure your discipline in consistent. Enjoy this lovely stage where babies become little girls and boys and they start to take note of the world they live in.
Schooling is sometimes a difficult issue that parents have to face, work through and make life changing decisions on. Parents ask: Do I mainstream? Do I send my child to a special school? What if he does not cope in main stream? What if the other children tease her?
Most children with Down syndrome these days are in fully inclusive schools. It is however every parent’s right to make a decision with regards to his/her child’s education. The Down Syndrome Association Western Cape has always been an organisation who support parents regardless of their decisions. We do not prescribe to parents what to do. We simply hope that the information we give will help parents to make an informed decision. Please remember that you know your child best.
In South Africa we have the most wonderful legislation that states that we all have a right to education. Unfortunately the reality is that the infrastructure and resources did not keep up with the laws. This means that some schools still cannot accommodate learners with special needs. It is however getting better and inclusion is not as strange a concept as it was in the previous century.
Inclusion is a philosophy of education based on the belief in every person’s inherent right to fully participate in society. Inclusion implies acceptance of differences. It makes room for the person who would otherwise be excluded from the educational experiences that are fundamental to every student’s development.
When inclusion is effectively implemented, research has demonstrated academic and social benefits for all students: both those who have special needs as well as typical students. Friendships develop, nondisabled students are more appreciative of differences and students with disabilities are more motivated. True acceptance of diversity ultimately develops within the school environment and is then carried into the home, workplace and community.
Parents should be very clear on what outcome they expect for their child. This long term goal must be conveyed to all involved in their child’s education. This will assist the team involved to help their child to prepare him/herself to live and work as independently as possible one day. This means being able to function and behave appropriately in a world of typical peers. The goals should be kept in mind and reflect the skills necessary to achieve this – both academic and non-academic. Parents acknowledge their high but reasonable expectations and inform the team that they will support them in any way possible. It is critical that the team sees the student’s future through both the parents’ and the student’s eyes.
BENEFITS OF INCLUSION
A number of studies over the years have reported the various benefits of inclusive education. In 1996, the National Down Syndrome Society of America (NDSS) published a research report on the inclusion of children with Down syndrome in general education classes. After analysing and comparing extensive parent and teacher questionnaires, this study found that with proper support and adequate communication between parents, teachers and professionals, inclusion is a favourable educational placement for children with Down syndrome. The study also found that the learning characteristics of students with special needs were more similar to their non disabled peers than they were different. Moreover, teachers reported positive experiences with students with Down syndrome. They described their students as eager to learn, especially when encouraged, and reported personal satisfaction in terms of their professional achievements.
This and other research has highlighted improved academic skills, social skills, communication skills and peer relationships as four of the most important benefits of inclusion. Non-disabled students can serve as positive speech and behaviour role models for those with disabilities and students with disabilities offer their non-disabled peers acceptance, tolerance, patience and friendship. As allies and friends, peers can offer support both in and out of the classroom. These findings show that everyone involved in inclusive schooling can benefit from the experience.
Inclusion South Africa has a very informative website, please visit them: www.included.org.za
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