Thank you so much for the questions! Many people’s perceptions of Down Syndrome or individuals with DS are based on misconceptions. I asked my husband if he thought that he treated people with DS differently. And he said yes, he said it was because when he was talking to them, he didn’t know what they were thinking and he knew that they processed things differently so was unsure how they would respond. And although this may be true in some cases it is characteristic of individuals that don’t have DS as well, we all process things differently. But in many cases, they process life more the same, than different.
So here are some answers to your questions:
Kmarie said: Beautiful. I heard someone say that they loved having a baby with DS because they get to stay in never land a little longer. I think that is just so perfect – I love that aspect. How do you feel about that?
When you do an official fact post along with a personal story can I link it or post it too?
Neverland? Have I loved that Ella barely cries? Yes. But she has been very alert since day one. Her bright blue almond eyes have watched my every move from the moment she opened them. Will she always seem to process the world through the eyes of a child? I hope so and I hope that can learn from that.
Red said: I would love to meet Ella, we have had a brief encounter when she was 6 weeks old & I’m looking forward to another chance to meet/visit one day again. The little glimpses that I have seen in pictures or videos of her and within your beautiful life she has an incredible smile and contagious joy. Does she enjoy music? Do people treat you & Ben as her parents any different when they realize she has DS?
She loves music! She loves make music as well as listening to it. We spend over 6 hours in the car together every week driving to and from Calgary and the radio is always on CBC. I am hoping that by the time she is 5 she will be well versed in all types of music. From Bob Mackowycz in the morning, playing anything from Joni Mitchell to U2 and the brilliant Julie Nesrallah on Tempo, which is all classical music.
Yes and no to question number two – people don’t really treat us differently, but especially at church, people will always tend to put a hand on my shoulder and say, “How is your special little girl? She is such a blessing”
Kiko said: Because of the fact I have been involved in working with persons with disabilities most of my life, we have had unique opportunities for my children to have interactions with people with different disabilities. I have always just immersed my kids, introducing them by name, just treating them like any other one of my friends. My kids have always been very open and enjoyed meeting my friends who live with disabilities. and I do believe whole heartedly how much they bless me and how they are wonderful part of our life and community. I am coming to the point though that my kids really want to know…..after understanding the wonderful things about people with disabilities, they really want to know about the uniqueness of the disability. I am not worried about if it may change their perception because my kids know them as friends. Maya asked me about DS the other day and what it is. And we have had discussions like above but now she really wants to know all the medical details and facts about DS and other disabilities. It’s inevitable I suppose because of my career choice, but I had a hard time finding words to explain to a 9 yr old. I have taken seminars on DS etc, and I know all the facts, but I had a hard time explaining….hmmm What would you say to Maya?
Here is what I would say to Maya:
Most people have 2 apples, 2 oranges and 2 strawberries and it makes a wonderfully tasty juice blend.
People with Down Syndrome have 2 apples, and 2 oranges but they have 3 strawberries. So their juice is also wonderfully tasty, but has more of a berry flavour.
And if she is too smart for that, read this post to her.
Claire asked: I guess what I want to ask is, how can I (and my family) support you and other families that have a child with DS? What can we do to help? How can we get involved in raising awareness?
And then Christine asked: What can we do to support families who have someone with DS? And are there unintentional things we might ask or say that are offensive or unsupportive?
Okay Claire and Christine, I am going to let you in on a little DS secret. When somebody says to me, “Oh, I knew someone with Down Syndrome and they were just so sweet and joyful.” (and it happens often) I diplomatically smile and nod but really I want to say, “That may or may not be true and quite frankly, I have bigger plans for my daughter than being sweet- that’s what tootsies rolls are for.” So how can you help? Treat people with DS with all the same respect and intellect that you would treat anyone else. They all may appear to have the same cover, but the book contents are completely different. Did you know that some individuals with DS are married, have jobs and live completely independent lives? Practically speaking, if you know a family with a child with DS, rest and understanding is huge. We are investing 24/7 like other parents but in much more intentional ways – surgeries, therapy, exercises, speech, ot, physio, the list goes on. Those around us need to know it is a major part of our lives and it isn’t going away so we need to talk about it….a lot and we need time to rest. Financially speaking there are many ways. The CDSS acts as Canada’s number one voice for individuals with DS. They fight for inclusion, equal opportunities and advocacy. Local organizations like Ups and Downs, provide community and education to families in their areas, and an organization like PREP focuses on education, speech and occupational therapy for kids with DS. All of which need financial support. Another way, is Reece’s Rainbow. DS kids need families to love them! And give them the support they need, but most of these kids are institutionalized by the age of 4. You can sponsor a child, which adds to the grant available to the parents that adopt them. See their Angel Tree on the side of my blog.
Motherofangels said: So have my own child with DS I don’t have to many questions regarding that. But… at what point did you realize having a child with DS was actually a blessing?
I don’t know….and to be honest I think it will be an ongoing discussion in my heart. …nope, even now, I can’t think of when or why.
Ruthie said: Krista, what do you find the biggest challenge in day to day living that presents itself because of Down Syndrome?
I’m sure most health issues are like this… unless you walk it you don’t really know it. What are the challenges that might surprise us who don’t know?
Ruthie, we are very blessed. And I recognize this and remember it every night as I pray for Ella. Ella has gotten through, thus far, unscathed….but perhaps one of the biggest challenges I have, and I know you can relate, is the fear of the unknown. When Ella was first born I read a book called Babies with Down Syndrome. It went through and talked about all of the things that are MORE likely to happen to your child- Epilepsy, diabetes, leukemia, low platelets, GI tract disorders, the list goes on. But remember telling these percentages to a person who had a 1 in 1300 chance of having a child with DS to begin with, doesn’t mean much. And I will tell you what the Elephant in every home with DS is – chances are, as Kelle put it, you are going to hold their hand before they hold yours.
But is because of this, because of all the challenges they face and the hurdles put in their way, the little victories are all the more beautiful.
And I leave you with this thought:
95% of pregnancies diagnosed with DS are aborted. What would the world be like if all of these beautiful babies were birthed with joy, and as children coloured our classrooms, as adolescents fought the stereotypes and as adults shaped the world?