Excuse me, is she a Down's baby?
Friday, April 11, 2014People have asked me the question, or have given me THE look that hints that the person is thinking of that question but is just too polite to ask.
Yea, K is a Down's baby.
To be more accurate, I would prefer that you refer to K as a child with Down Syndrome (DS) . She does not belong to John Langdon Down, the medical doctor who described this syndrome in 1866, so it's actually more polite to refer to a child who has DS as 'a child with DS'. Sometimes I hear medical doctors, nurses or therapists who still use the term 'Down's baby' to refer to K, and I cringe in my heart. It feels as if they don't acknowledge the fact that K is my child, and that she has part of my genetic make-up, and bears some of my features too. By referring to her or anyone with DS as a 'Down's baby', it gives the impression that the society looks upon them as a group of people who are 'diseased with a scary condition' or 'mental retards' (oh, how I hate that term!).
On the contrary,
people with DS are far from that.
Down Syndrome is medically known as Trisomy 21 as each somatic cell has 3
copies of chromosome 21. This is a genetic condition, and there is no cure for this. With just one extra copy of chromosome 21, it also brings about many medical problems like congenital heart problems, higher risks of lung infections, reflux, Hirschsprung disease, Celiac disease, thyroid problems, leukemia etc. Not forgetting the intellectual disability. The problematic list just goes on.
copies of chromosome 21. This is a genetic condition, and there is no cure for this. With just one extra copy of chromosome 21, it also brings about many medical problems like congenital heart problems, higher risks of lung infections, reflux, Hirschsprung disease, Celiac disease, thyroid problems, leukemia etc. Not forgetting the intellectual disability. The problematic list just goes on.
However, life is not as bleak as what you probably imagine right now. [Updated on 27 Oct 2015: I am glad Straits Times picked up this topic after news of a baby with DS with congenital heart conditions was abandoned by his parents and helped to raise awareness with this article.]
Just today when I was walking towards the nearby shopping mall to get some groceries, I thought of K and how much she has developed after being on the ECMO (
When K was a newborn, I tried to make her look as 'normal' as possible. I would only select pictures which show her radiant and infectious smile, and often deleted those that did not look flattering. Pictures with her mouth open or tongue drooping due to low muscle tone, were quickly deleted or just saved in my iPhoto for personal keepsake. And when I brought her out, I was concerned that people would look at K and immediately recognise that she has DS from her facial features. Each eye I caught looking at her just made me more self-conscious.
However, I've learnt that in order for K to be socially accepted and included, I must first accept her in my life, and not to exclude her subconsciously. Since then, I have been more open and accepting of what she cannot achieve. I know that I just have to give her more time, and eventually she will be able to achieve that milestone. I have also shared more openly about her story to my students and people who are curious enough to ask.
K surprises me with her small achievements every day. There is never a day where I'm not learning something new about her. For example, just a couple of days back, I tried out a simple board game called Go Away, Monster! with her. It was one of the first games that Ch and L played, and I thought that at 2.5 years old, this is a good age to start K on some board games to teach her about turns-taking and to follow simple game instructions. Moreover, she has always expressed interest whenever we play any card or board game, by coming near the game set and "messing up the set-up". This is probably her way of playing, but of course, the older siblings do not appreciate this type of play from her. Anyway, after I explained what she had to do when it was her turn, we started playing and demonstrating the game play to her.
Do you believe that she waited patiently for her turn to reach into the bag to pick out a puzzle piece? Though she still doesn't quite figure which puzzle piece fits the game board, she tries to match the puzzle when we point out the correct shape for her. She also understands that when one of us pulls out the monster piece, we shout "Go away, Monster!". She babbles loudly and shoos the monster away with her hand. Isn't that cute?!
K has also always appreciated music, and would request for her favourites by showing us the hand actions of the song she wants. She loves The Wheels on the Bus, Twinkle Twinkle Little Star, Row, row, row your boat, and Itsy, Bitsy Spider the most and never gets tired listening to the songs over and over again. Recently, she tries to follow the hand and body movements of songs from Hi-5 or other music-packed children's shows as well. She even imitated me when I was practising for a bucket drumming performance.
Another example of how she has progressed in her cognitive development. Just two months back, she could not get the matching activity right, no matter how many times I tried to work it through with her. However, a week ago, somehow she figured it out and started matching the pictures! Though she doesn't get all the pictures matched correctly, her progress excites me and reaffirms my belief that she is able to achieve the milestone as long as I am patient with her.
K loves taking pictures and would volunteer a "cheeky face" when you flash a camera or camera phone in front of her. Her god-ma even caught her attempting to take a selfie!
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| Picture taken by K's godma |
And for a child whose intellectual ability is supposed to be low, she amazes me with her ability to point out different parts of her body. Currently, she is able to point out her hair, ear, eye, nose, mouth, tongue, neck, shoulders, armpit, fingers, tummy, belly button, toes, and buttocks quite accurately. She also knows where to position the ear thermometer, the digital thermometer (under her armpit) and even knows how to wear the stethoscope.
There are many more positives about K. She is so loving, and is emotionally competent enough to tell when I am sad. She showers us with her hugs and kisses too.
I have read many successful stories of people with Down Syndrome who lead a very independent life in their adulthood, and are able to support themselves by working. Gone are the days where a person with Down Syndrome is just hidden away at home, away from the society. Today, parents are more aware of their potential, and with more community support, parents are also more informed about early intervention programs. Hence, the improvements shown in people with Down Syndrome are also far more significant than before.
I look forward to the day when I hear her speak in proper sentences, is able to feed herself solid food like rice, vegetables and meat (not just porridge or pureed foods) and is able to run around like a normal child.
I just need to give her and myself
a longer time to explore,
to fail,
and to succeed.
****
[updated on 29 October 2015] Dear Friend, if you have reached this post because:
you were searching for more info on parenting a child with Down Syndrome,
you are looking for a support group to be connected with parents of children with Down Syndrome in Singapore,
you need some hope and confidence that you are not alone in this parenting journey of a special needs child,
these are a few of the support groups (that I know of) that you can join in Singapore:
1. Down Syndrome Association of Singapore - DSA aims to provide support to families and caregivers, help a person with Down Syndrome to lead a normal life and contribute to the society, and help integrate a person with Down Syndrome into mainstream society. You can also visit their Facebook page.
2. Singapore for Down Syndrome, a closed group on Facebook - This is a FB closed group for parents of children with Down Syndrome in Singapore. Please email Grace at squirrelwee@gmail.com if you wish to join the group.
3. a close-knitted Whatsapp group chat for Mommies of children with Down Syndrome - Entry to this group is by invitation and recommendation. You can email me at simplylambchops@gmail.com to find out more.
11 comments
As I read your post, this song came to mind. May it encourage you as you continue to raise K up with the love God has deposited in your heart. I see God's grace in her life and I know, she will go on to fulfil the destiny God has for her - http://www.youtube.com/watch?v=EwoCbcSXlSM
ReplyDeleteThank you Angie, I listened to the song... Yes :) It is my wish that hubby and I raise K to be a testimony of God's love for us, and for her to honor God in every little way she can!
DeleteHer 'cheeky face' is SO CUTE! And her blouse in the first photo is so pretty! Take heart, we are all cheering for K and your family!
ReplyDeleteThank you L Lee (I know who you are *wink*) for cheering for K and us!! It means so much to us!
DeleteHow wonderful for K to be your child and you to be the chosen mom! Please continue to share your amazing pictures, I love her selfie pic!
ReplyDeleteI thank God for gifting K to us!! And thank you for visiting Simply Lambchops!
DeleteShe's a sweet heart! I rejoice with you over her achievements and anticipating many more to come? :)
ReplyDeleteThank you homeschoolsg! Every word of encouragement means a lot to me, and I hope in the future, K will be able to read these comments herself!
DeleteOopps typo, it was meant to end with a '!'
ReplyDeleteThank you for sharing your story. :) K is one adorable girl. :)
ReplyDeleteKayleen is so adorable! I'm always touched and encouraged by your sharing of K and your journey with her. Hope that K's story will touch more people :) God bless you and your family.
ReplyDelete