What is Down Syndrome??
Simply put - Allie has an extra chromosome on her 21st set of chromosome's. This is why it is called Trisomy 21. It is commonly called Down syndrome because of the doctor who discovered it - Dr. Down. This happened at conception and each cell in her body has this extra chromo. There is no cure for DS and it occurs in every race and every age group. One in every 800 babies born has Down syndrome. The extra chromosome basically causes changes in her appearance and her abilities. The changes range from person to person just as people without DS are so different from one another - but, similar as well. To really know about Allie's DS, we have to wait and see how she grows - which is no different from a parent wondering about their "typical" child and what they will be able to do as she/he grows. For now, we know a few common features with DS - one of the biggest ones in my opinion is her low muscle tone. This is the reason for many of the delays you might have noticed. Think about all the muscles we have - now, picture them not being as easy for you to use. You'd have to work much harder to lift your arm, lift your legs, grasp an item or talk all for example. This is why babies with DS lift their heads later, hold their bottles later, crawl, walk and talk later. It isn't their fault, it is their genetic makeup, they have to work extra hard and deliberately to make these things happen for them. When they do reach these milestones, they are HUGE for us - and for Allie - and so rewarding. We really see how hard it is for her to do things other babies often do without many people noticing the efforts they made.
Since becoming involved with Down syndrome, I've realized I was not the only ignorant one. In fact, many people that have relatives or friends with DS still don't fully understand "today's DS". I say that because anyone older than 12 years old really didn't have all the chances for success and distance that Allie has today. (And there are some amazing over 12 year olds that are doing all the same things others are doing. The possibilities for Allie are actually endless!) This is because of Early Intervention (EI). It was discovered and proven that children that get EI between birth and 3 years old do much better than those that don't. The brain develops at an amazing rate during those years and teaching children during that time is very important for their long range ability to learn and develop "typically". Allie attends daycare and will attend school with her 'typical' peers. It is our goal to raise awareness so that when she does go to school she is not made fun of or have to have children tell her that their parents won't let them play with her. I realize I can't stop all of this from happening, but I do believe the more awareness we raise the chances of Allie and others going through this discrimination reduces. But, we can't do it alone.
As you know, Allie can do many things - some that typical children can't. Allie can't talk verbally yet (in part due to muscle tone from DS, in part due to hearing loss and maybe even due to her prematurity) but she communicates very well with American Sign Language. She has - at last count - 60 words she can sign. She can also read about a dozen words and after a quick test this morning to confirm my thoughts - she can read lips to an extent, too. She is a very smart baby. She is very in tune with her toys and can accomplish many of the same tasks that the others in her class can do. She is starting to crawl and can get around a room pretty quickly. She is close to walking and it is clear she is interested in it. She is very loving and happy, but don't be fooled - she can also pout and try to get her way, she can show frustration and get upset - just like other toddlers.
As always, my gratitude to all of you for accepting Allie for the amazing baby she is and seeing her as only Allie -not someone different.
We'd love to see you at the Buddy Walk!
Sandy, Tim, Allie and Nicky (woof!)
(Allie is just about to sign "cookie" in this picture)