As a parent when you first hear the diagnosis of Down syndrome, or Down’s syndrome as it is commonly called, a million things will go through your head all at once. How will this affect my child? What will the future hold? And what can we expect? It’s natural to experience a sense of panic, but in today’s world, you can raise your child almost the same way that you would with a child without this genetic disorder.
Types Of Down Syndrome
There are three types of Down Syndrome:
- Trisomy 21
The Physical Effects Of Down Syndrome
Children with Down syndrome are easily recognizable because of the specific physical characteristics that exist regardless of the type of Down syndrome. These include:
- Facial features that are flat
- Small ears
- Small head
- Shortness of the neck
- Tongue that bulges
- Upward slanting eyes
- Misshaped ears
- Poor muscle tone
Although a baby born with Down syndrome will generally be normally sized, they have a slower rate of development, and there is often a degree of mental retardation, though this is not severe, usually mild or moderate. These development delays may result in:
- Poor judgement
- Shorter attention span
- Learning difficulties
- Behavior issues
There are several medical complications that can co-exist with Down syndrome, which are caused by chromosomal abnormality. These can include:
- Congenital heart defects
- Deafness or poor hearing
- Vision problems
- Problems with the hips
- Obstructive Sleep Apnea
- Teeth abnormalities
- More prone to illness including ear infections, lung infections
- Increased risk of leukemia
What Should You Do First?
The very first thing you should do is to find out as much as possible about Down syndrome and learn what the ramifications may be for your child developmentally, physically, and socially. There is a vast amount of information available, but be sure to focus on reputable publications and sources, as there is also a lot of misinformation out there.
Down Syndrome: Supporting Yourself And Your Child
There are a number of early intervention programs that are designed for children with Down syndrome. These usually include speech therapists, physical therapists, and early education specialists. These programs can greatly enhance the development of your child.
Many years ago children with Down syndrome were automatically put into special education centers. Nowadays, although some children still need to attend these centers, many are now attending mainstream schooling with some support. Which education option you choose will depend largely on your child’s abilities.
Due to the poor muscle tone and because many of these children have a speech delay, it can be difficult to communicate orally. While a speech therapist works with your child, you can use other means of communication such as visual aids, or sign language. Later, as the child gets older, you can look at the range of devices that are available to increase communication.
Strengths Not Weaknesses
It is important to always focus on the strengths of your child not his or her weaknesses. By focusing on the weaknesses, you and your child can end up in a cycle of frustration. Focusing on the strengths promotes feelings of achievement, thereby encouraging your child to try other things.
This is a specialist way of teaching children with Down syndrome and other learning disabilities. It involves the parent or support worked focusing on the interests and strengths of the child, which improves communication and cognition.
Your child will need regular appointments with doctors, therapists and specialists, and these can be tricky to keep track of. A diary, poster or electronic calendar can help you keep up with where you need to be and when. Also, you should keep all medical information related to your child in one place, such as a large folder, so that you can easily refer to it or carry it to the necessary appointments.
Taking Care Of Yourself
As a parent, particularly those of a special needs child, we often forget to take care of ourselves, as our focus is on the needs of our child. It is very important to remember that if you don’t take care of yourself properly, you will be unable to properly take care of your child.
Don’t forget about your relationship with your significant other either. Coping with a special needs child can take quite a toll on marriages, relationships, and the rest of the family in the household. Try to have regular time with your other children doing what they are interested in so they don’t feel left out or unimportant. Arrange for babysitters, and spend time with your spouse or partner regularly as well to nourish your relationship.
There are a variety of support groups out there for parents of children with Down syndrome. At first you may not think they will be of any help, but in fact they can be an invaluable resource.
The road is a bumpy one for a parent of a child with Down syndrome, but it can be just as rewarding as with any other child. Don’t be discouraged by any hiccups, and celebrate the positives instead. Most of all, don’t do it all on your own. Seek out the support you need, and don’t ever be afraid to ask for help from the many resources that are out there.