Siblings: The Unsung Hero's

Down Syndrome Awareness month (DSAM) is October and for the entire month  I usually bombard my social media feeds with facts, blogs, and images in an effort to raise awareness about my son Blake and his community of people with Down Syndrome. I actually do this all year round, so it is always "awareness" and education month for us. This year for DSAM I want to focus on the not so talked about topics like siblings during this awareness month.

In the past Blake's siblings have written a blog that was feature on The Mighty (Read here) and expressed how they felt having a brother with Down Syndrome. Today it's my turn. I also will include the thoughts and perspective of another mom, Nicole in our community who is a few years behind us on this adventure.

Just like everything else in life there are both positive and negative aspects to being a sibling and I feel both sides are more enhanced when that sibling has a disability. In my home the highs are really high and the lows are devastatingly low. My daughter is along for this roller coaster ride. As mother's we do our best to divide our time if we have multiple children but to be honest my son gets more than his "fair" share of my time and energy, because the nature of his disability requires more. I know this leaves my daughter feeling frustrated and hurt as she approaches her tween years. She has expressed it to both my husband and I. As she is aging, I know she also has fears and concerns for his future, much like I do. She asked me, "what happens to Blake when you and dad are gone?" not to long ago. I explained that we are working for Blake to be independent and live alone but reminded her that he will likely always have a need for support. I don't want her to feel pressured to have to be his sole caregiver in the event of our deaths. It may seem premature to be discussing with a 10 year old but anything can happen in life at any time. I want her to know that she can care for Blake if she chooses but it is not her responsibility.

Fears and frustrations aside she is  his biggest fan, my greatest helper and an amazing big sister! I know that his presence in her life is making her a better, more patient, compassionate and understanding young lady. Blake has opened a whole new world for everyone. We have met so many people we would have not otherwise, attended special events, and participated in activities in a way we wouldn't have been able to otherwise. The benefits are not lost on her, neither is the joy he brings or the love they share.

She is and always will be my SHEro .. and his.

Nicole shares her perspective ...

With Down Syndrome awareness month coming to a close, I  feel it necessary to pay homage to the unsung hero in my house. This would be my 6 year old (typical) daughter, Olivia. Olivia is less than 2 years older than my daughter with Down Syndrome, Amelia. Like most parents with two or more children, we struggle to divide our attention equally. The fact is that Amelia needs us more, plain and simple. That is hard for a six year old to understand, but Olivia does. Amelia has odd behaviors that make even the simplest tasks, like walking one block to school, difficult and time consuming. For the most part, Olivia seems to have unlimited patience with her sister. Olivia and Amelia’s relationship, like Amelia, is more typical than different. They fight, they play, they fight some more, they love each other.  They are siblings. 

Overall, I think having a sister with Down Syndrome has made Olivia more patient, kind and selfless. This year Olivia and Amelia are attending the same school. I asked Olivia what the best part of going to the same school as Amelia; her answer? “Getting to hug her everyday day at lunch”. Olivia makes my heart full. When I asked her what the worst part was; she responded “ Sometimes Amelia hugs me too tight”. 

I guess for Olivia, she only knows what it’s like to have a sister with Down Syndrome. I’m sure that Olivia notices her friends with typical siblings play together and I often wonder if she’s jealous, if she wishes that Amelia didn’t have Down Syndrome. If she does, she never lets it show. Olivia just accepts Amelia how she is...her sister.

Cheers to raising strong girls, supportive siblings and SHEro's!

DSAM: Siblings Sound Off

Kaleigh's hand written submission for this blog. Published here unedited.

On this 27th day of Down Syndrome Awareness Month I wanted to look at Down Syndrome from the perspective of the Sibling. Blake is lucky enough to have 3, flanked by 2 sisters with a big brother to watch over the group.

Did you know? In 2011, Dr. Brian Skotko found in study conducted at Children’s Hospital Boston, “among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome.” (see reference below).

I have said many time's that Blake being born with Down Syndrome is making my children more compassionate, empathetic, helpful and kind human beings. I asked them to communicate, in their own words their feelings about Down Syndrome, Society and their little brother Blake.

Kaleigh Rain, 7 Years old:

"Kids that have Down Syndrome are just like regular kids. There is nothing wrong with having Down Syndrome. Blake and I like to dance together to music. We also like to play outside. Blake is very good at art. Blake sometimes gets a little dirty and everyone needs an extra bath.

 We like to laugh and wrestle. As sister Kaleigh I have to stick up for Blake. Blake has fun at school. I love him even that he doesn't even know his name yet and everyone is different. I hope you will be nice to kids and grown ups with Down Syndrome." 

Danica, Age 13: 

"My baby brother has Down Syndrome. Many people thing Down Syndrome is bad and that but they're just like any other person. My brother Blake is just like any other kid, he's fun, sunny, caring, sweet and so much more, I enjoy having him as a brother so much, he has brightened my life since he was born. I have had so many memories with him that I will remember my whole life.

He makes me remember what it was like to be younger and how I just wanted to do what I wanted to do and how much I loved my family. Blake has shown so much to me. I may be the older sibling the one to be an example but he showed me things that I didn't know before like I didn't even know what Down Syndrome is before I found out Blake had it. I didn't think any different of him, he was just like everyone else. When my step mom and my dad told us what it was I still thought Blake was normal. I'm so thankful to have my little brother Blake and can't wait to share many more memories with him."

Dylan, Age 17:

"Don't let Down Syndrome change your opinion on a person. I have watched my little brother grow up for 4 years now and he is still just as loving and kind as anyone else if not more.

 He excels everyday just as any other kid does. I'm positive hes just as smart as children without Down Syndrome in his age group. I wish people wouldn't put titles on people like my brother. 

His life is just as important as mine or yours. Never judge a person just because they have a so called disability, it doesn't change who they are."

When I look around I see the impact that Blake and every other member of the Down Syndrome community is having on the lives around them. They are contributing to the lives of people in their community, classrooms and those closest to them, their siblings. I don't think that my children would have changed their answer in any way if asked by another person. I love that they are considering the impact's of labels society places on people and how a label, like disability does not change who you are. An important life lesson for any child. I am so proud to be raising such loving advocates and allies!

Further Reading:

Skotko, B.G., Levine, S.P., Goldstein, R. (2011). Having a Brother or Sister with Down Syndrome:  Perspectives from Siblings.  American Journal of Medical Genetics Part A: 155:2348-2359.