Down syndrome awareness ... and beyond (7)

The Virtue of Stubborn

Lisa Bridle (guest post) Mumma Love, 23rd October 2014

... We have stubbornly resisted the low expectations and special path reserved for people with disability. We have been unwavering and obstinate that Sean would get a life as ordinary as possible, be recognised for his gifts not his challenges and that, if necessary, we would fight for his inclusion in the mainstream of community life. Equally Sean has persistently demonstrated his determination to be at the centre not the margins – and to make a place for himself in the world, even in places where he is not immediately welcomed ...

Why it’s not always about me
Kat Abianac, Parker Myles, 24th October 2014
... Then you get the others. They’re not the majority- but they are the hardest type of stranger for me. This type of person just wants to share, and overshare ... But, the next time I heard that phrase that so often goes screaming through my head, it changed everything for me.

What people can't tell about kids with Down syndrome from looks alone
Ellen Seidman, Parenting.com, 16th October 2014
... I asked parents on social media who have kids with DS, along with family members, to share what they thought nobody can tell about their children with Down syndrome. These are the amazing responses ...

And more from Angela Lombardo, at Down Syndrome Program at Boston Children's Hospital:

DS Awareness Month #23:

 I have told this story before but I think it's a great one. A few years ago, my son sat down and told me he wished he didn't have DS. My heart crushed. Where did I go wrong? How did I raise a child who didn't love who he was? I work with 700+ families but MY own child wishes he didn't have DS? My head spun. I started thinking of testing, counseling, meetings that need to happen, etc. 

I paused so I approached him carefully and didn't trigger any more upset with my reaction to his statement. I took a deep breath and said "what part of having DS do you not like?" I pause and with a blank expression wait for his reply but my insides were melting. My dear child looks at me with this sad face and said "If I didn't have DS, I could have a TV in my bedroom and play shooting video games like Call of Duty!!" 

I sit and stare at this handsome little boy and start laughing. I tell him "those things have NOTHING to do with DS, they are because I am your mother!!!" 

He then paused and I swear he was contemplating his answer carefully and holding back how to get rid of me as his mom. I warned him to watch what he said as a reply and he laughed. 

Something so simple and I thought it was huge. It's just kid stuff. He could have said anything. He could have complained that he couldn't tie his own shoes. He could have said he was worried he would never have a girlfriend. 

I anticipated such grand concerns but no, he hated that I don't allow tv's in bedrooms and at that time and age I would not allow him to play Call of Duty. Can't blame the diagnosis for those, only can blame the momma!

... and by the way, he still has no TV in the bedroom BUT I did let him buy Call of Duty once he turned 18 years old. Funny part is he HARDLY plays it!

DS Awareness Month Post #24: 

Live and learn. I talked to the Head Coach today about the incident the other day. Asked him if it's been resolved in a manner he is happy with. He said totally. 

The coach who said the "R word" talked to Isaiah and they are all back in good standings together. I asked if he talked to other kids so they knew it wasn't acceptable and he said "he did but the kids knew it right away already" He said the kids all saw Isaiah's upset, his reaction and they knew what it was from immediately. The kids learned from Isaiah how it makes him feel. 

This coach who said the word did feel bad and now has learned. He has learned that a word he may have said without drama his whole life can hurt someone's feelings. It may have hurts others before without him knowing. Isaiah had a grand colorful way of showing he was upset. 

He banged a table, yelled and told the coach that he didn't like what was said laced with some swear words. Isaiah spoke up and reacted. The Coach got the message clearly. There was a discussion and they have moved on. A lesson for all involved even the players in the room who observed it. 

Isaiah learned the importance of speaking up for himself and his voice does count. Isaiah now will learn from me that your words don't have to be angry or laced with profanities to be heard. Emotions are hard to control when you are hurt or feel insulted and it's hard but you can advocate in a decent calm manner. You can talk. You can be calm and pull someone aside. You can be the stronger person who has control over how they appear to others. You can teach lessons about hateful words without being hateful yourself to the person who made the error. 

We want to foster relationships and educate and not create hostility or drama that may keep relationships from moving forward. 

Live and learn and live and learn and live....this process never ends if you are an 18 yr old boy or a 54 year old man.

See Angela's post from 23rd October (#20, 21, 22) for the back story to the incident she refers to here.