Parenting a Down Syndrome childbyIamcanadian28©
*This article is from my experience, I am not a doctor or any type of medical professional*
Imagine you are the brand new parents of a bouncing baby boy or girl. Everything went fine through the delivery; the baby is a good weight and looks healthy. You've finished counting fingers and toes and then the doctor breaks the bad news. Your otherwise healthy looking child has a well-known condition; Down syndrome. That dreaded extra chromosome. Even the term Down Syndrome carries a negative connotation.
The doctor explains the situation to you but you can barely take in all the information about what has happened to your child. The vast array of medical problems that your child may have, or could develop, as they get older can be overwhelming. My wife experienced a lot of self-questioning after he was born. How could this happen to me? I'm not an older mother. Everything was fine through my entire pregnancy. These and many more thoughts are likely running through your mind as you come to grips with everything you are being told.
Some of the health concerns are very real and immediate. Children with Down Syndrome have a higher incidence of congenital heart defects. Our son Christopher had to endure open-heart surgery when he was four months old to correct large holes and leaky valves. After several agonizing hours and his little body full of tubes, his heart was working properly. It was by far the darkest day of my life.
Their will come a time when you have to share your child's diagnosis with friends and family. The responses we received ranged from shock and disbelief, to very supportive. One response to be prepared for is the "special parent" comments. We heard on many occasions that special children were born to special parents. We didn't feel any different from when we had our first child. As parents, we are dealt the hand we are given and have no choice but to rise to the challenge. There are no other acceptable options to us.
The stigma that Down Syndrome has attached to it largely comes from previous generations. The belief at that time was that they were somewhat inadequate and should be isolated and treated as though it were a disease. The children were taken from their parents and institutionalized instead. Education often wasn't provided and very few individuals with Down Syndrome were integrated into the mainstream community.
The current situation is very different. Children with Down Syndrome attend regular public school classes like every other child. Many will gain employment and live independently from their parents when they reach adulthood. Some even get married. It is true that very few people with Down Syndrome go on to have children but many experience lives similar to the rest of us.
Keeping this in mind, here are some tips to make things easier for yourself and your child:
1. Research One of the best things we ever did was to find out as much about Down Syndrome as we possibly could. There is a lot of resource material available at your local library and bookstores. One book I would recommend you read is "Babies with Down Syndrome: A New Parents Guide, 2nd Edition". The book discusses health concerns, child development and teaches you early intervention methods. It also discusses legal issues that surround children with Down Syndrome such as setting up trusts, wills and guardianship.
There are many reasons why research is so important and they may not all be obvious. Firstly, you want to know as much about it as possible so you will be prepared for any of the health or development issues should they arise. Secondly, you are going to need this information for dealing with friends and family. Chances are many of them will have incorrect preconceived notions of what life will be like for a Down Syndrome child.
Finally, the more you understand the condition, the better you can communicate with their doctors. Doctors are very critical components of any special needs child's life. They often speak in a way that is difficult to follow. The better grasp you have of his condition, the easier it will be to follow what they tell you.
2. Accepting the diagnosis This is the hardest thing for a lot of people to get past. It is easy to get into the routine of blaming yourself, each other, the child, god or many other things. It can be very difficult to accept that your child is the less than "perfect" person you were hoping for before they were born. There are expectations that we as parents have for our children that need to be adjusted for children with Down Syndrome. They develop slower than other children do and may never reach the point of leaving home. It can be a lot to deal with, but eventually for you and your child, learn to accept them as they are.
3. Meet other parents Chances are there is a local Down Syndrome society chapter near you, no matter where you live. They hold all sorts of get-together events where you can meet other parents who are dealing with the same situation as you are. These events can be great fun and provide a solid support network for you and your child. It also allows your child to interact with other children facing similar issues. The annual Buddy walk is a great way to promote Down Syndrome awareness and raise money as well.
4. Your child is not the Syndrome There is a reason why I refer to them as children with Down Syndrome instead of Down Syndrome children. They are as varied in the personalities as you and I. Much like everyone else, they resemble their families more than they do each other. There is much more to the life of a child with Down Syndrome than the challenges they are presented with on a daily basis. They have the same needs for love, support, playtime and affection as other children.
5. Advocate for your child Whether it's at school or for a government program, we have to advocate for our special needs children. Sometimes that means making some noise and taking a stand. The school systems goal is to meet the needs of the majority of children. This often means that children, both exceptional and delayed, do not get their needs fully met. They will likely need an additional worker provided by the school in order to be a regular participant in class. In a more rural area, like where I live, there can be a shortage of funding and trained personnel. This may mean a prolonged battle with the school so be prepared for it.
6. Get a good doctor Pediatricians are not all created equal. Make sure you get a good one even if you have to shop around. This is important because chances are you're going to be seeing them a lot and it can make your life so much easier. We were lucky that the first pediatrician we went to was amazing and had a very thorough understanding of our situation. He referred us immediately to a heart specialist and followed everything through ensuring that we received the proper care. He recommended other specialists for vision and hearing related issues. Other friends of ours have not been so lucky and have had to learn this process the hard way.
7. Look into Government programs No matter where you live there are likely a variety of government programs designed to help parents of children with special needs. There is also a good chance that you will have to find out about many of them on your own. There are some programs here in Canada that provide financial assistance, physiotherapy, a one-on-one support worker and even a worker to watch your child for a short time.
8. Prepare for ignorant people Learn to ignore people who make uninformed comments about your child. If you must respond, do so in an effort to help educate them. The root of ignorance as always is a lack of understanding of the situation.
Friends of ours recounted a time they were in a restaurant with their daughter and she was being rambunctious as young children are. Sitting at the table next to them was an older couple. When the wife looked over and realized their daughter had Down Syndrome she said "Oh, she's one of those". The parents were understandably upset and not very happy. The good thing that came out of the situation was the woman's husband came over later in their meal and apologized for her rudeness. He even paid for their dinner. This goes to show that even though some people can be rude, people in general can still be kind to each other.
9. Do not compare children One of the most difficult challenges of having a child with Down Syndrome is to not compare them to other children; particularly their brothers and sisters. This is entirely unfair. Most likely, they will develop at a slower rate in everything they do. Their milestones are set completely different from other children. They will eventually do all the things that other children do, just at their own pace.
There are also several benefits to having a child with Down Syndrome. While these children tend to struggle more than most with everything they have to learn, the satisfaction you get as a parent from watching them succeed is immeasurable. They are so proud of themselves for even the smallest accomplishments because they have to work hard for everything.
You also learn to appreciate the small things that most people take for granted. Children with Down Syndrome tend to be more grounded and notice every little detail around them. Even medically there are several advantages that Down Syndrome provides to partially offset the challenges it imposes. They have remarkably low rates of addiction particularly to drugs and alcohol. Rates of many types of cancer are also enormously lower than in the general population.
With a vast array of medical testing available, the majority of expectant mother's will know that their child has Down Syndrome before they are even born. One of the problems in the medical community is the lack of knowledge at the family doctor level. The prevailing wisdom is that the potential medical problems that accompany Down Syndrome are not worth continuing the pregnancy. Many expectant only hear about the drawbacks of having a special needs child without ever having the benefits discussed.
I hope this article has been helpful and if anyone wants more information feel free to message me.