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.

The Participation Trap

My second child Blake has now reached the place just prior to pre-school, known here as the time for Parent Participation or to me as the Participation Trap.

I went yesterday with reservations as I had a previously failed attempt to fully embrace the program when my daughter was small (prior to two) as the children all played independently (with no benefit that I could see) as the granola eating, over indulging mothers looked on and judged each others parenting skills or the lack thereof. After a public disagreement with one of their 'expert' guests about visual and auditory stimulation and a trip to the dairy farm that made me weep for days after I called it quits.

This time I signed up in another location hoping that geography and passed time would make a difference. One of my dearest friends reminded me 'it was time' so we each put our children into the program. Her daughter who is 5 months younger than Blake is much more advanced which I attributed much of to gender, as girls tend to develop faster than boys in my experience. When they play one-on-one I never really notice or think about his delays.

As a mother with a child who has developmental differences all social situations (I am learning) with his peers is difficult for ME. I do not notice the delays or deficits in our day-to-day lives as he goes about his business, plays and learns in his own environment and at his own pace. Yesterday I had a reality check. Alongside his peers his delays were very pronounced and heart wrenching to me. I know we are not supposed to compare our children with others but we do ... we ALL DO! 

I thought it best to speak with the teacher and inform her that Blake has Down Syndrome. Her immediate response, which I feel well intentioned, was to give me an option to switch him into the 1-2 year old class. I immediately declined and vowed to myself to gut this out no matter how difficult I perceived it to be. I had committed to be there and instantly felt trapped. I watched the clock tick by, each moment feeling like an eternity. Blake played and ran about the room with pure joy, discovering everything he could, at least he was enjoying himself I thought. It made no sense to me to take him back a year in the program. It was counter intuitive that he would learn to speak or expand his expressive language skills being surrounded by those who still babble. I feel he needs to be with his peers and learn from them. I panicked as the foreshadowing of his academic life flashed before my eyes. Is this where my advocacy role for my son and his education begins? The thought in that moment was exhausting.

After "circle time" where I knew only two songs, yard time where Blake was pushed around, out run for toys, out climbed and out talked by the all other children, and the sign up board for adult mommy snack I decided to make my escape 10 minutes early. The walls had closed in, the staring became unbearable so we quietly slipped out the door to race home for Blake's regularly scheduled occupational therapy session manic Monday style.

I am not the type of mother that enjoys socially contrived, phony atmospheres with women whom I have nothing in common with other than a vagina. I don't give a shit about circle time songs or snack for the mom's. It's just not my thing I guess. As mothers we must sacrifice our personal enjoyment for the sake and benefit of our children, right?

The REASON I joined the program is for my son to be exposed to his peers, those of the same age. I want him to be able to play, learn and grow. I also want him to be exposed to others who have other skill sets than he so he is able to acquire them or at least gain exposure to them.

After much reflection yesterday I realized that I had set the trap for myself. With my past experience and my personal adult annoyance with situations like this clouding my judgement I let all of the negative aspects get to me. I usually always look for the silver lining but in a room full of 'normal' or 'un-delayed' children, which is the parental equivalent of the oxygen being sucked out of the space, it overwhelmed me.

What will I do? 

I will free myself from the trap by doing the following:

1) Sticking with the program of his peers (two year old's) and seeing through my commitment.

2) Choosing 3 positive things from each session to reflect on.

3) Being cognizant that this is BLAKE'S time.

4) Realize that Blake will take what he needs from this experience at HIS own pace.

5) Educate every single person in that room about Down Syndrome and how proud I am of my son.

Have you fallen into a Participation Trap with a program? school? or social situation with your child?

Share your experiences below.

We are ALL Models

This post of mine first appeared in a guest blogger spot on Loren's World. Loren Ridinger is a business woman who truly inspires me and others with her relentless positive motivation for women in business and in life.  I had the honor of being a guest blogger on her fabulous site. You can see the original post HERE

Kaleigh Rain & I

As my daughter ages I see more and more how she takes EVERYTHING I say and do, repeats it, and mimics herself and her conduct after mine. It is a HUGE responsibility and I try to stay aware of what is going on around her.   

I wanted to share my post "We are ALL Models" as I think we all take for granted the impact our actions and words have on the people and the world around us.

My Daughter Kaleigh Rain. Age 4

We are all models, but not in the conventional sense that your mind automatically jumps too.  I’m sure as women at one time or another you have pictured yourself walking the runways of Paris or Milan with the likes of Karl Lagerfeld or the late great Gianni Versace who are proud of us as their muse of the moment.  Oh wait, is that just me?  Anyway we are all models in this life: ROLE MODELS. We are living examples to those around us.  

You would be surprised who is listening to what we say but to a greater extent who is really watching what we DO.  It is wonderful to be able to talk about intentions, dreams and goals but let’s face it folks, it’s just words until you have actions behind them.  Your actions speak volumes about the person you are and what you are trying to accomplish. People may be modeling themselves after you or you have as a role model inspired something in them to take action in their own lives.  It is the most apparent in children and they don’t even have to be your own. 

As part of normal child development and socialization children look to adults (parents and others) as models for behavior both the acceptable and unacceptable. Try to be cognizant of your actions, not just your words and set a good example for them.  They will in turn be your greatest teacher and source for personal growth to be a better person overall.  Be aware of your role model status, or even your potential role model status and it may force some introspection and self examination you may not otherwise do. Think about the concept of being a model in your everyday life even to strangers.

A great place to start thinking about what kind of model you are could be by the simple use of manners or politeness, participating in random acts of kindness or helping out a stranger for no personal benefit whatsoever. Even taking the time to smile at a stranger may set the tone for their day and they may model this kind of behavior and use it in their own daily dealings with the world. Think also about the people who have been models in your life or whom you model yourself after.  IT is a role that is very important in the grand scheme of your life and how YOUR actions impact the world around you.

No matter who your audience; ALWAYS put your best runway foot forward when you step into the world. Remember; you are strong, fierce and fabulous. You’re a MODEL!

What's YOUR AUNTitude?

While performing my daily ritual of tweeting and reading of my busy timeline from those tweeters "I Follow" I came across an amazing article in the Huffington Post called "The Truth About Childless Women" written my Melanie Notkin AKA the Savvy Auntie.

"My circumstances have left me infertile but they have not left me non-maternal. I love the children in my life with boundless adoration. If I was not meant to be a mother to 2.1 kids, then perhaps I was meant to be motherly to many more."
Read the entire article HERE:

There is an entire community of women who feel the same way as Melanie and perhaps their circumstances have left them without a child of their "own" but they own the love they have for a child or children in general. Many of these women are childless, some by choice and others by circumstances, but deserve respect, love and support.

According to Melanies article "Nearly 46 percent of American women through age 44 are childless. That's up from 35 percent in 1976." This is a BIG issue for women that needs to be part of our dialogue.

I dug deeper into the world of the "Savvy Auntie" and discovered an amazing on-line resource for women who love children and the important roles these women play in the lives of children around them. I myself have a circle of Aunties who have been a wonderful support and source of love for both myself and my 2 children.

Check out the amazing resources, experts, gift suggestions and information. Join the community to connect with other Savvy Aunties too

If you are a Savvy Auntie on the go grab Melanies new book SAVVY AUNTIE: The Ultimate Guide for Cool Aunts, Great-Aunts, Godmothers and All Women Who Love Kids (HarperCollins)-April 2011

I had recently had the opportunity to discuss the Savvy Auntie concept with Melanie:

LISA: Who is a "Savvy Auntie"?

AUNTIE: A Savvy Auntie is one who understands that Aunt-hood, just like parenthood, doesn’t come with an instruction manual, and seeks to discover how to be the most Savvy Auntie she can be and inspire other Aunties in the same way. She’s savvy in every other aspect of her life; now she can be savvy about kids too.

LISA: Where did the original concept of the community come from?

AUNTIE: When my nephew was born, I realized that there were no modern resources for the cosmopolitan aunt. Aunthood felt like an old "auntique" and not representative the fabulous kid-friendly women I knew. Where were the rest of this nearly 50 percent of American women? Where was my tribe? I couldn't find one, so I launched SavvyAuntie.com in the summer of 2009. And now there's a growing Auntourage.

LISA: What do you hope to accomplish through your on-line community?

AUNTIE: I hope that aunts learn from experts, find activities to do with their nieces and nephews, indulge in gift ideas and ask for and share in the savvy with each other.

LISA: What is your favourite aspect of being a Savvy Auntie?

AUNTIE: I love that my influence is different than that of my nephew's and nieces' parents. I give the children a different perspective on life. They learn from me.

LISA: What has been your most rewarding experience from your on-line community and/or publishing your book?

AUNTIE: Every day is a rewarding experience big and small, the good and the bad. It's all about building something spectacular for these women who deserve it because they give so much of themselves to children not their own. I'm so happy for and proud of Savvy Auntie.

LISA: What advice would you give any women who loves children but has yet to have any of her own?

AUNTIE: She should remember that aunthood is a gift. It's a gift to the children who never suffer from too much of her love, for the parents who know their children are loved without condition or obligation by another responsible adult, and it's a gift for her - a legacy she inspires. Every boo boo she kisses, every little hand she holds, every hug she gives is a gift. Being maternal is hers to own. So own it.

Did you know? Aunties Day is JULY 24th ~ Don't forget to celebrate the Aunties in your life. Shower them with the love and gifts they so richly deserve and bring to the lives of your child/children all year long.


Savvy Aunties are a mothers best resource for love, fun, and support for yourself and your child or children. It's about time we all change our AUNTitudes.

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