Welcome to new parents

Congratulations to you and your family on the birth of your new baby! As new parents of a child with special needs you are no doubt feeling confused, upset and maybe even angry. You are not alone. It is hard enough to be a parent but to suddenly be confronted with an uncertain future for the child you waited so long for can be disheartening. Even though things are not working out the way that you planned, there is hope and there is a whole new world of opportunity and excitement opening up to you. 

A diagnosis of Down syndrome can be frightening, but try not to look at your child as having a disability but rather as a child with different abilities. Happiness and independence are just as possible for a person with Down syndrome as they are for anyone else. Providing a loving, supportive and caring home for your son or daughter will guarantee your child has a steady foothold on the path ahead of them. 

Reach out to the people around you. Enjoy life through the eyes of your special child. Find a support group. Keep informed. Appreciate that not only is your child a unique gift to you but that you are the same for him or her. The years ahead will be challenging but the rewards of raising and loving a child with Down syndrome are without measure.

What is Down syndrome?

Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome (DS) is universal across racial and gender lines, and it is present in approximately one in 800 births in Canada. 

Down syndrome is not a disease, disorder, defect or medical condition. Down syndrome itself does not require either treatment or prevention. The sole characteristics shared by all persons with DS is the presence of extra genetic material associated with the 21st chromosome. Persons with DS have 47 chromosomes in every cell instead of 46. To date medical researchers have not determined the cause. DS occurs among all races, ethnic groups, nationalities and socioeconomic classes. It occurs evenly in boys and girls. It is important to realize that nothing in the mother or father does, or fails to do, before or during pregnancy can cause DS. 

Because chromosomes and the genetic information they carry determine how we grow and develop, the presence of an extra chromosome does affect a child in a number of ways. The word "syndrome" means that many different characteristics are seen together as a package. Some of these physical characteristics may include low muscle tone and eyes that appear to slant upward. It should be noted that any physical characteristics common to persons with DS are features that can be seen in anyone in the general population. Since people with DS have an extra chromosome they do have features that cause them to resemble other persons with DS. That being said, persons with DS also resemble their parents, brothers and sisters and like their siblings, they will also possess their own unique personality. 

The effects of extra genetic material vary greatly from individual to individual. Persons with Down syndrome karyotypes may be predisposed to certain illnesses and medical conditions, but that genetic arrangement does not guarantee their development. The same illnesses and conditions are also present in the general population. Timely and accurate diagnosis and appropriate treatment of these illnesses and conditions improves both the length and quality of life, to the same extent as would be expected in the population without DS. 

DS commonly affects learning style, although the differences are highly variable and individualistic, similarly to the physical characteristics or health concerns. A majority of people with DS have mild to moderate developmental delays. An intellectual disability means that an individual does not just learn more slowly but that he or she actually learns differently and develops different strategies and mechanisms for learning. It is impossible early in life to determine any person's future strengths or weaknesses. This applies to all people, not just persons with DS. As with any person, persons with DS are lifelong learners who acquire new skills and talents when presented with a variety of life experiences and opportunities. The most significant challenge is to find the most effective, productive methods of teaching each individual. The identification of the best methods of teaching each particular child ideally begins soon after birth, through early intervention programs.

Types of Down syndrome

There are three types of chromosomal patterns that result in DS. They are: trisomy 21, translocation and mosaicism. A blood test is required for chromosome analysis and the type of pattern would be determine at that time. Ninety-five percent of people with DS have trisomy 21, which means there is an extra number 21 chromosome in each cell. 

Two to three percent of people with DS have a translocation pattern. In translocation, during cell division, a part of the number 21 chromosome breaks off and attaches itself to another chromosome, usually the number 14 chromosome. About two thirds of these translocations occur spontaneously while the rest are inherited from a parent. If the chromosome test shows a translocation, it is recommended that the parents have their own chromosome analyzed as the chance of having other children with DS may increase significantly. 

Approximately two percent of people with DS have mosaicism. In this case, a faulty cell division occurs in one of the early cell divisions after conception, resulting in some cells having 46 chromosomes and some having 47. The percentage of cells with 47 chromosomes instead of 46 varies from person to person.

Useful Links

Local Resources
Moncton Employment & Training Services, Inc.

Services d’Entrainement & d’Emploi Moncton, Inc.