Few people asked me, "so, what does it mean for you, Tiana and your family?" when talking about Down Syndrome. I understand why people ask me this and I feel no offense as long it is asked out of genuine curiosity. I share a lot about my family because I see many things about my family that should be celebrated and life will be better for my children if there is more awareness about adoption, Down Syndrome and so on. Down Syndrome is something many people know about at glance but do not understand at depth. Many know what people with Down Syndrome might look like. But do many people truly understand the daily lives of people with Down Syndrome and their families? Not really.
So, what does Down Syndrome mean for Tiana and us? Although James and I have had the honour of befriending with several people who have Down Syndrome, living with and loving someone who have Down Syndrome brings us to a whole new level. Before I even go further, I want to make an important point for you to keep in mind. Tiana is Tiana first. Tiana is a baby girl who has her own personality, likes, dislikes, temperament, appearance and so on. Down Syndrome is most definitely a part of Tiana but Tiana is still Tiana first. Now, I can begin! :)
Tiana in the Present
* Tiana is more "floppy" due to low muscle tone. The bonus? Her cuddles are the best! You'll only understand if you hold her!
* Tiana is small in stature and looks younger than her actual age.
* Tiana will reach many milestones as any other baby. It only might take a bit longer. We use OT/PT and other services to help Tiana develop from one skill to other.
* There are several health issues associated with Down Syndrome. As preventive measures, Tiana is being monitored by several specialists.
* As her parents, we are learning to be patient, to celebrate each milestone and to just enjoy her as a baby. It can be tough watching other babies meet milestones quickly but as long we remind ourselves that she WILL get there, we let it go and enjoy being with her.
Tiana in the Future
* Tiana may or may not speak. We do not know as of yet just how much she does hear but we are giving her the tools now to help her develop in this area if it is something that she can do. (She does have severe hearing loss in one ear but we do not know if she has any hearing loss in other ear. For sure, she does hear some.) If she DOES hear quite a bit, there is also a question of whether she would be "non-verbal" or not. (This is a whole other blog.)
* Tiana will communicate in ASL, regardless of how much she hears. James, Jada and I are all deaf and use ASL as our first language. Tiana will be part of that.
* Tiana will continue to reach various milestones but again, it'll take some more time. With time, we will learn more about her talents, her interests and what we can do to encourage her in those areas. There will be some struggles in other areas and we will have to advocate for her to ensure she gets services she needs.
* Again, we will make sure her health is closely watched by specialists.
* She may or may not be living independently when she turns into an adult. We cannot know this for sure at this point. Regardless of what happens, she will have a full life doing what she loves and being with people who loves her.
This is pretty broad but it touches on some things that people often wonder about. Of course, Tiana is only 10 months old and it is too soon to really know what the future looks like. The most important thing I can tell you is that we KNOW she will thrive. We just don't know which path she will be on but regardless of which path, I know we will be proud of her!