Congratulations on the new addition to your family!

Whether you had time to prepare or not, you are now the parent of a child with Down syndrome. This can be a time filled with many emotions, questions and concerns. Sadness, confusion, anger, grief and joy are all completely normal feelings, whether you feel them all at once, or get through them slowly one at a time. It is important to know that you did not cause the Down syndrome, and that Down syndrome does not have to be a negative or hopeless situation for you and your family. 

There are many families in your position and there is lots of support out there. In fact, people with Down syndrome are doing some pretty amazing things and, in time, you will see how truly amazing it is to have someone with Down syndrome in your life!

What is Down syndrome?

Down syndrome is a congenital condition caused by an extra copy of the 21st chromosome. This extra chromosome causes many of the distinctive facial and physical characteristics, as well as developmental delays seen in many people with Down syndrome.

Babies with Down syndrome are prone to many health issues. Although many of these issues are not serious, some can be. Issues with sight, hearing, skin, teeth, muscle tone and internal organs are possible. Forty per cent of infants with Down syndrome have heart defects that range from mild to severe, and some may require surgery. It is important to make sure that your baby has a very thorough exam by medical professionals and sees a pediatrician regularly.

Although your child has Down syndrome, it is impossible to predict how mildly or severely delayed they may be physically and/or cognitively. Each person is different! It is important not to put limitations on your child and it is okay to expect great accomplishments in their future!

First steps

Whether you are dealing with any immediate medical issues or not, it is important to begin seeking services. A quick call to Durham Infant & Child Development and Grandview Children’s Centre will be your first step towards assessing your child’s developmental needs and obtaining support for you and your family (see our resources section for contact information).

It is important to call right away, as generally there are lengthy waiting lists. Workers from both agencies will help you navigate the system and access the various therapies (speech, occupational, physio, etc.) that your child may need as they grow. You may also be connected with or referred to other professionals to help with feeding issues, toileting, assistive devices or any other support that you or your child may need along the way. 

The Durham Down Syndrome Association is a great resource for information, support, and a chance to meet other families who have children with Down syndrome! 

We can have a parent of a child with Down syndrome speak with you on the phone or come to your home to offer support and information.

In addition, head over to the Canadian Down Syndrome Association. It is a treasure trove of information of what to expect as your child moves from one milestone to another.