Family

Parents

Early Intervention and Education for a Child With Down Syndrome

Early intervention programs that integrate special education and speech and physical therapy has been shown to boost the developmental potential of children with Down syndrome.

Most children with Down syndrome start at mainstream schools, but some parents will choose special schools or schools that have programs tailored for their child. As a parent of a child with Down syndrome, you can be proactive to ensure that your child gets the support and education he needs and to which he is legally entitled.

Although the skills and abilities of people with Down syndrome vary greatly, many grow up to live independently or in supportive group environments, and to hold down jobs.

Support for Parents of a Child With Down Syndrome

Having a child with Down syndrome can be a frightening and lonely experience, especially at first. There are many resources available, so be sure to reach out and get the support you need:

Learn all you can. Read about Down syndrome in other sections of this web site and other online sources. Ask questions of the child’s pediatrician.
Build a support system. Seek out local groups and parent network organizations for families that have a child with Down syndrome. Ask your doctor or child developmental specialist for referrals. Join an online chat group for parents of a child with Down syndrome.

Take care of yourself. Don’t forget to care for the caregiver — yourself. You won’t do anyone any good if you get burned out. Take regular time to do the things you love, or have a night out with friends.
Take care of your relationships. Try to make regular adult time for you and your partner. Find a babysitter you like and trust. And don’t forget your other children: make sure to keep up with their activities and try to have special one-to-one time with them as often as possible.

Get help. If you and your partner are consistently burned out or depressed, or if you are not getting along, seek help. Having a disabled child can be extremely stressful, and can put your relationship at risk. Your health care provider can refer you to a qualified individual, family, or couple’s therapist.

Siblings

How does Down syndrome affect the Sibling?

Expectant parents look forward to the birth of a healthy baby. When the diagnosis of Down syndrome is made questions are often asked about the effects of this on the family and particularly the other children in the family.

In the past it was assumed that the effects of having a child with Down syndrome in the family were negative.

After various researches carried out in Europe, it has been reported that there was no evidence that having a child with Down syndrome in the family automatically produces ill effects. Most families accept the challenge of raising a child with this condition and report it as being rewarding and strengthening.

Different Ages = Different Reactions
Under the age of three children are unlikely to understand the concept of different but will be sensitive to stress or tension in the family and may need explanations.
From the age of four, siblings may question why their brother or sister cannot do things like they can.

Six or seven year olds may think that an intellectual disability is like an illness from which you can recover.

From the age of eight siblings may begin to make comparisons with their friends and their awareness of their own situation grows.

However, as the majority of children believe that the family they grow up in is normal they may be unable to compare their situation with a family without a child with an intellectual disability.

Siblings can feel anxious if they don’t know what future role is expected of them. With the increasing range of options for people with Down syndrome to lead independent lives, there is less likelihood of making the sibling responsible for the long term care of a family member (2006).

Communication is Key

Since the 1990’s there has been increased focus on the experience of siblings as well as parents. The sibling relationship is a complex one regardless of the presence of Down syndrome. Some researchers found that just like their parents, children need information about the disability in order to alleviate worries that they didn’t cause it or they might catch it. Porter and McKenzie agree with other writers about the need of siblings for information. They suggest that siblings experience similar negative feelings as their parents. Talking about their feelings and negative emotions and resentment helps siblings achieve a greater understanding. It can also give them skills to help them deal with conflicts that may arise because of their sibling’s disability. They can receive permission to pursue their own growth and have their needs met. The sibling relationship can grow stronger when they accept their negative feelings and have the capability to be the most enduring of all relationships. In any family sibling relationships are complex with mixed emotions but they have the potential to influence positively the lives of siblings with and without disability.

Growing up with a brother or sister with Down’s syndrome can be fun, but sometimes you might find it difficult. Remember that all brothers and sisters feel like this about each other sometimes.

People with Down’s syndrome can look a little like each other but they look more like their own brothers or sisters or their Mums and Dads. Your sibling will probably like the same sort of things that you do, but sometimes they might need extra help from other people to do them.

Emotions that Siblings may experience

You may feel lots of different emotions about your brother or sister with Down’s syndrome. You may feel: happy, sad, annoyed, embarrassed, jealous, guilty and protective towards them. Occasionally, you may find that you worry about your brother or sister. Sometimes it helps to tell someone how you are feeling. Other siblings, parents and even your brother or sister with Down’s syndrome may have felt the same way too. Sometimes when something is driving us mad, we feel the need to let off steam. Try to be aware of how you feel and instead of taking it out on someone else you could try:

  • Going for a run or a walk
  • Writing down everything you feel in words or drawing a picture of how you feel. You might want to keep them, show them to someone or simply throw them away when you feel better.
  • Writing down all the positive things that people have said about your brother or sister with Down’s syndrome. As a sibling, you may already be aware that people react in different ways towards your brother or sister. Sometimes your brother or sister may be treated in a way that makes you feel embarrassed or angry.

How to deal with other people’s attitudes

  • Try to tell people about Down’s syndrome.
  • Try not to become defensive, although this isn’t always easy.
  • Try to control your own anger. Remember it’s not personal.
  • Try to remember your own attitudes. Maybe you had some of the same thoughts before you had a brother or sister with Down’s syndrome.
  • Talk to someone who might understand how you are feeling. Enjoying your relationship with your brother or sister
  • Give yourself space, you also are an individual with your own needs.
  • Stop being hard on yourself, you can’t be perfect all the time, even if it feels as if you have to be.
  • Accept that the feelings you have are normal and that others share them too.
  • Don’t feeling guilty.
  • Accept your brother or sister for who they are.
  • It’s good to talk about your feelings to others.
  • Try to do lots of fun things together.
  • Talk to your brother or sister about things that you are doing.
  • Remember all brothers and sisters argue at some point, whether they have Down’s syndrome or not.