Down Syndrome

Since October is/was Down Syndrome Awareness month, i thought i would write a little post about Down Syndrome.

There is a high termination rate of pregnancies when there is a DS diagnosis. Why it is so high, i am unsure, but i have some ideas. I believe that alot of people, the medical field included are uneducated when it comes to Down Syndrome. I can totally understand this because when Kylee was born and i received her diagnosis, i was devastated. I thought it was the worst thing in the world and i think alot of that was the fact that i really didn't know much about DS and the images/thoughts i had were outdated things.

So many things have changed for the Down Syndrome community. Many years ago, mothers were often encouraged to place their babies in institutions and of course, medical technology wasn't like it was today. There are health issues that accompany a individual with DS, such as heart defects. Obviously years ago, the medical knowledge and technology weren't like they are today, which would shorten the lifespan of an individual with heart defects. Today, the most common heart defect that accompanies individuals with DS, which is Atrioventricular Canal defect has a successful repair rate of close to 100% and most will come through surgery with zero to little complications. If it is like this now, imagine what it will be like in the future. Kylee had open heart surgery for multiple defects and only had a hospital stay of 4 days... she did amazing. Just think, 10 years from now, who knows what surgical repair will be like.

Early intervention therapy is started shortly after the birth of a baby with DS. Kylee started recieving therapies within 3 months of her birth. I don't believe that the therapies that babies/children receive now existed years ago. With the help of these therapies, children are able to acheive much more developmentally now than years ago. Yes, scheduling therapies can be challenging, but it is all in the convenience of your own home or if your child is in a childcare setting, it can take place there.

When a child starts school they are able to be mainstreamed into regular classrooms. From what i have seen and been told, individuals are far more successful when included with their typical peers. Years ago, there was no opportunity for this. Most individuals, not all have either mild to moderate cognitive disabilities. I read that only about 5% have severe or profound disability.

I have often read different things about what people are afraid of with the possibility of having a baby with DS. First, people believe that it will ruin their marriage/relationships. Studies have shown that marriages are actually better when raising a individual with DS. In fact it shows that divorce rates are much lower in couples with a child that has DS than other married couples. People often feel that this will have a damaging effect on siblings. Most often, this is not the case. It has been reported that siblings often have a greater sense of compassion.

Then there is the financial issue. While yes, medical appointments can contribute to more financial expenses, but there is assistance available. Early intervention therapies are provided at very little to no cost. When the indiviual reaches 18(i think) they are able to receive financial assistance. Before age 18, they are able to receive assistance as well, but in this case the parent's income is counted, therefore some families do not qualify.

People often worry about the future and what will happen when the parents get older. More and more adults are able to live semi independently in group homes, have jobs, even get married, and live much more independent than they were able to years ago.

I have often heard this statement, " i have seen what it is like for a family to raise someone with DS." Then they will go on to say how poor of a life the adult has. Well, if you think about it let's say they are talking about a 20 something year old. What kind of services, medical technology and overall community support was available 20 years ago? Another thing to take into consideration is this- what type of family environment did that individual grow up in?  Was it one that was filled with love and support or one where the family didn't provide such needs.  My point is things are changing for the DS community to help individuals live a longer, more independent life.

I have often heard/read that they(moms) wouldn't want their child to live a life of suffering. For some reason, people think that individuals suffer from Down Syndrome. Honestly, i think the most that they suffer from is the ignorance of others. If individuals with DS are often stereotyped as very sweet loving individuals, then where is the suffering? I think one thing people fail to realize that individuals with DS are just that. They are all individuals, who are unique. Yes, they can very sweet, but they can also be stubborn. They have a mix of emotions just like everyone else. Phil and I volunteered at a camp this summer for individuals with DS ages 10-17. The only suffering i saw there was when the teenage girls were upset because a certain boy was dancing or talking with another girl...sounds pretty typical to me. Sure, there are some differences. It does take them a little bit longer to do things, but given the opportunity, most can do it. Something i heard that really sticks with me... treat your child as if they have a learning disability, not an inability to learn. People often think that individuals with DS aren't capable of lots of things. If given opportunity, time, patience, and compassion, there is so much they can acheive.

Many people say i know i couldn't handle raising a child with special needs. We all believe at some point that we aren't capable of certain things. If you had asked me before Kylee was born if i could handle raising a child with special needs, i would have probably said no, but you just accept and deal with it and what do you know most parents love the journey of raising a child with DS(i know i do). Sure raising a child with DS can be challenging, but raising any child has its challenges. I often feel more frustrated with Kate than i do with Kylee. When Kylee achieves a task, it is so much more exciting because she has worked hard for it. When she smiles her whole face lights up. She is an absolute joy and i am so thankful to have her(and Kate). Having a child with DS comes with plenty of rewards. I have learned to have more patience(although i don't always use it), i have learned to appreciate life more, and i have acquired a larger family. It is great to have such a great support community(although most is on the internet) to share the joys and challenges of raising a child with DS.

When we had an appointment with the geneticist a couple of weeks ago, he stated that many doctors when delivering a diagnosis of DS will deliver it in such a bad manner, which usually is something along the lines of good baby vs. bad baby. He stated and i agree that it doesn't mean it's bad, it is just different. Unfortunately, many doctors will push termination and/or give outdated and incorrect information about DS, which is sad because most patients trust their doctors to give them the best information possible.

In summary, having a baby with Down Syndrome is not something to be feared, in fact it is one of the best things to have happened to me!!