(31 for 21: 9)
Yesterday, I was talking with a mom who has a teenage daughter with Down Syndrome. I was explaining how we found out about Tiana and the process of bringing her home. During the conversation, I realized something. Our experience and our emotions when finding out that Tiana has Down Syndrome is different than the mom who found out at birth (or during pregnancy) that her baby has Down Syndrome. I am not saying one way is better or worst but I do recognize that it is somewhat different, at least initially.
When we found out about Tiana, we knew she had Down Syndrome right away. We educated ourselves about Down Syndrome (through books, doctors, workers, friends and blogs) and felt comfortable/excited about beginning the process of adopting Tiana. We knew it would be challenging at times but we also knew that it would be challenging with any child we bring home. Adoption is not all roses and we are realistic about challenges we will go through with each child. Loving our children trumps all and we knew Down Syndrome would not change how we love Tiana. This is our experience at the beginning.
Then of course, actually raising Tiana brings a whole lot of excitement and new set of challenges. I feel we share many same feelings and thoughts as other parents with children who have Down Syndrome. We feel sad at times. We feel joy at times. We feel frustrated at times. We feel excited at times. And we feel love at all times.
It might've started out differently for us but eventually, we all walk together in this journey. Thank you for welcoming us into the community and we look forward to making many more friends!
(31 for 21: 8)
I just got out of a meeting with Tiana's home visiting teacher and a parent representative from the Down Syndrome Association. During the meeting, I realize that I've somehow found myself on the other side of the fence when learning about something that is new to me, which is raising a child with Down Syndrome.
As a Deaf person, I've always felt strongly about how my Deaf child should be raised, in which language and in what environment. This comes from experience and from observing many different situations within and outside the community. I know there are two different approaches that people often argue that is best for the Deaf child. ASL as the primary language or following the Auditory-Verbal approach. Often, people who are not Deaf themselves will tell parents what is best for their Deaf child. There are some consequences to that because not every Deaf child can succeed at the AVT method (meaning full speech ability and high level of confidence in speaking environment), and the few that did become the "example" for rest of children to follow. Oftentimes, this is very frustrating because in doing this, the child who do not succeed at speech will spend most of his or her life working towards something that will just not happen (becoming a person with full hearing and speech ability). The point of this blog is not to argue which method/approach is the best but I'm sharing this perspective to explain why I suddenly "get it" from this other side of the fence.
As result of Tiana having Down Syndrome, there are many specialists and therapists involved in her life. Many of them have a very medical view of Down Syndrome and only see Down Syndrome through textbooks or at work. Not many of them actually lived with someone who had Down Syndrome. As a result, doctors will spend a majority of their time with me listing the negatives, things I need to watch for, or point out in what area Tiana is delayed in. This can be quite frustrating for me because I would leave the appointment feeling I did not do enough for Tiana or that no matter how Tiana is progressing, it would never be enough for them. But...
Today, a parent representative came from the Down Syndrome association to share resources available in my area and to just offer support. I couldn't believe how good the meeting felt, how refreshing it was to talk so positively about Tiana's progress and her future. Throughout the meeting, she played with Tiana, pointed out things she thought was amazing about Tiana, excitedly shared what she experienced with her own daughter at this age, and just really made sure I knew how welcome I was in this new community. She was so excited for us, she explained why having a child with Down Syndrome is special and she shared resources that were positive, refreshing and realistic.
Now, I get it when hearing parents of Deaf children share with me about how they felt after leaving AVT and meeting an Deaf adult, introducing ASL to their child and sending their child to a Deaf school or a Deaf program. I get it. It is so refreshing to just accept your child exactly as who s/he is and celebrating your child.
Acceptance. The word of the day.
(31 for 21 Challenge: Entry #4. This blog is for my family and friends, near and far!)
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!