Down Syndrome Awareness ... and beyond (8)

As we move from October into November, here are some nice 'rounding off' pieces about awareness and where to next, and some links to how Canada is marking it's own Down Syndrome Awareness Week (1 - 7 November):

The Grand Finale
Mumma Love, 31st October 2014
Links to each of this year's 'awareness' posts from various writers published on this blog, in one of the best collections for the year.

So now you are aware
Leahe Thompson, Our Cora Bean, 29th October 2014
... There is much to be learned and taught and shared beyond awareness ... What we all want for our loved ones with Ds and other disabilities really is acceptance. Acceptance that the value of their lives shouldn't be a legitimately debatable subject. Acceptance that people with disabilities belong in our communities, in our classrooms, in our lives. Acceptance that people with disabilities deserve to be able to work for reasonable wages, vote as citizens, and be considered adults with rights that others are granted without question ...

Nicholas Popowich talks about life with Down syndrome
CBC News Saskathewan, 1st November 2014
Nicholas Popowich is an ambitious 24-year-old. He spends half of his working week studying theatre arts at the University of Regina, and the other half working at a SaskTel kiosk in a Regina mall ...

The Canadian  Down Syndrome Society has posted this billboard across the country:

• You can follow CDSS's campaign on Facebook here

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.

Down syndrome awareness ... and beyond (6)

A few words from and about siblings ...

My sister has Down syndrome - it doesn't matter to me

Ellen Stumbo, Finding Beauty in My Brokenness, 14th October 2014

Today I have the great pleasure and honor to share with you a guest post by my oldest daughter (at eight years old). It is Down syndrome awareness month, and she’s talking about what it’s like for her to have a sister with Down syndrome. I’m telling you, it’s a great post ...

That's All I Need": Down Syndrome and Sibling Relationships

Kelle Hampton, Enjoying the Small Things, 8th October 2014... I've heard a lot of special needs sibling stories--most of them inspiring and grateful but yes, disheartening ones too. When thinking about the future and what these three will share, I try not to focus on specific dreams but on the big picture. What do I want for them? What do I love most about my relationships with my brother and sister? ...

I’d Have It No Other Way

Beautiful in his time, 5th October 2014

Today, I asked a childhood friend, Alyssa, to share her perspective of the sister of a brother with Down syndrome ...

A boy, his sister and Down syndrome
Randi Gillespie, Chicago Tribune, 30th September 2014
All he wanted to do was to have her play by his rules. Provoked, Liam shouted at Maddy: "I wish you did not have Down syndrome." Yep, he said it ...

Karley is an early bird ... she sometimes cooks breakfast for her sister
who likes to sleep in. Good morning, Sarah - surprise, surprise!
This week Karley is not cooking breakfast though - she is representing
NSW in aquatics at the Special Olympics National Games in
Melbourne! Good luck Karley. Thank you for the photo.

Down syndrome awareness ... and beyond (5)

As she has done for some years, Angela Lombardo, Down Syndrome Program Coordinator, Boston Children's Hospital, is posting each day for Down Syndrome Awareness Month on the program's Facebook page - her personal reflections will resonate with families everywhere. This selection is reprinted with her generous permission: 


DS Awareness Month Post #18/19:

Honestly, I have nothing. Some days I don't even think about DS. This word isn't on the tip of my tongue at all times. I am not "dealing" with it 24/7. I am raising my son. I don't forget but it's not on my radar all the time. I didn't wake up today thinking "I will take my son with DS to the mall today". 

This label "DS" plays a huge role in our world. My son has it. I work in a DS program and say this word countless times each week. It doesn't leave my tongue at work but when I am not at work and home and just LIVING it's not the main focus. When he was little, it was. It's all the doctors wanted to talk about. It's what everyone focused on. "He has DS, so...." "Because he has DS, we need to...." Maybe since it was so new to me, it felt like it was always in the front of the line. 

As time goes on, it sort of lost the "need" to be said so much. It doesn't go away, he still has it. Living day to day though, it's not a focus it's more of an understanding. We do things differently DUE to the fact he has DS. We adapt, we accommodate, we bend/twist things as needed but it just goes without saying why. It's just living. It's my knowing what Isaiah needs and meeting those needs. It's less on the label and more on the kid who has it. 

I guess my thought today for DS Awareness Month would be .. yes, I am aware and families are aware but it's not always the main focus...the child is. I look at this picture of us and see my son not just a label.

DS Awareness Month Post #16: 

Does your neck hurt from all the hats you have to wear sometimes on your head? How on earth can we do it all? 

I remember when Isaiah was young and I would just shake my head and say forget it, you are not getting any floor time today! He hated floor time so he would get grumpy and then I would get grumpy and neither of us benefited from his laying on his belly. I felt guilty then would lie to the EI PT who asked if we got our floor time in. Of course, we did ... how could I tell her no way? I was worried I'd be judged. What kind of mother am I if I can't deal with some exercises and his cranky ways? I remember skipping Speech so I could take him to the zoo. I justified it easily since we talked about animals. 

We had so many appointments between doctors and therapists. I felt so much pressure to get him ALL the services he could have so he could do his best BUT I started to feel we were losing focus and burning out. 

At what expense did we do all that? Can't he just be a kid? Can't we just not "treat" or "work" on something? Can we sit around in PJ's watching a movie without feeling we are missing CRUCIAL learning moments? Will he never perfect his pincer grasp due to our love of Toy Story? 

Balance is everything. I had to shake off that self-inflicted pressure of doing it all. He will have a pincer grasp. He will be just fine. He is not a science experiment or a part time job that I have to punch in and punch out each day making sure I completed all tasks required. He still got his therapies. We still played hooky now and then when we felt wild and crazy. It's a balancing act.

 Find your balance and don't forget that you can always practice the pincer grasp eating Cheerios while you watch Toy Story!

DS Awareness Month Post #3: 

It's fine to cry. There are so many reasons why tears can come. 

When you first hear diagnosis, you may have tears from shock, tears from being afraid, tears from loss, tears from being overwhelmed. You may cry when you first hear from relief, understanding, peace. Your tears may not come until later. You can have tears from loving someone so much it just hurts. You can have tears from wanting to fix something way out of your control. 

We can cry about wanting to take away troubles that we can't prevent from coming. We can cry out of pride and feeling so much relief about something wonderful that happened. We can cry with others since we can relate. We can cry for others since we can relate. We can cry when we learn things weren't as bad as we thought. We can cry when things get harder than we ever thought they could be. I am not a huge crier but when it comes it's needed. It's a release. It's a huge reminder that something means so much to me. 

Some may feel crying is negative but I think it's a huge testament that we have hearts, feelings, love and people that mean the world to us. I have shed tears for so many reasons. I have been with so many families shedding their own tears out of sadness, fear, happiness, joy, etc. People apologize but I say don't. You are doing what you need to do right now. You need to cry and there is nothing wrong with that. It's fine to cry.

Down syndrome awareness ... and beyond (4)

A distinct move to take 'awareness' up a notch, to examine what we mean and intend by 'awareness' activities has been emerging strongly in recent years' 'Awareness Months/Weeks/times, and is addressed here by the always-worth-reading David Perry. Thanks to Catia Panetta for drawing it to our attention:

Down syndrome isn’t just cute

David Perry, Aljazeera America, 15th October 2014

... Throughout October, adorable photos of people with Down syndrome and heartwarming, inspirational stories will stream across the Internet, all in the name of awareness. Shirts declare that extra chromosomes make you a hero. Other slogans and memes praise parents of children with Down syndrome. One T-shirt proclaims, “No frowns, just Downs!”

In fact, sometimes my son, a 7-year-old with Down syndrome, frowns. So do his parents. In the Down syndrome community, we have worked so hard to promote the positives that too frequently we leave no space to discuss the struggles ...

... (My son’s) value as a person is not based on his cuteness. What matters is our shared humanity ...

Down syndrome awareness ... and beyond (2)

Raising awareness about the abilities and needs of people with Down syndrome is needed within professional communities, too.  These articles are designed to inform medical professionals:

Do expectant moms receive adequate information on Down syndrome?

David McNamee, Medical News Today, 2nd October 2014
October is Down Syndrome Awareness Month. Though an annual campaign, it seems particularly relevant right now due to recent high-profile controversies involving negative perceptions of Down syndrome pregnancies ...

Down syndrome: what is the current focus of research?

David McNamee, Medical News Today, 3rd October 2014

Yesterday, as part of Down Syndrome Awareness Month, we looked at some of the controversial issues and popular perceptions surrounding pregnancy and Down syndrome. Now, in a follow-up feature, we speak to scientists and organizations who are working on groundbreaking research to improve outcomes for people with Down syndrome ...

October is National Down Syndrome Awareness MonthKishore Vellody, Be Glad You Have Children's, 6th October 2014

... There are an estimated 350,000 people with Down syndrome living in the United States today. However, most people are not aware of some very interesting facts about Down syndrome. Most medical textbooks and websites tend to focus on the potential medical complications that people with Down syndrome may face. However, I think a blog on Down Syndrome Awareness month is a great place to talk about a few of the many positive aspects of Down syndrome that are not frequently discussed. Let me share some examples of what I mean ...

Down syndrome awareness ... and beyond (1)

Officially in Australia we celebrate Down Syndrome Awareness Week, during the third week of October.  It often spills over into the days before and after the official week, helped along by our increasingly global connections via social media, as the US marks Down Syndrome Awareness Month throughout October - maybe we should just regard part or all of October as "Down Syndrome Awareness Time".  In any case, during this time, a great deal of good, thoughtful writing, many beautiful images and videos, and any means of communicating a message, emerges around the world, and we will highlight some of the best of it here, over the next couple of weeks or so ...

Caleb lives with his  family on the south coast 
of NSW, and he intends to make the most of October!

Down Syndrome Awareness
Garden of My Heart, 1st October 2014
... This month, social media will be flooded with extra pictures of people with Ds and many will choose to share facts and figures. That is good, but I’m craving something more this year. The internet links families and individuals with Ds in very powerful ways, and as I’ve said on this blog in the past, it’s time to harness that voice and move past the awareness script our community seems to be stuck repeating ...

One of the most important things to share during Down Syndrome Awareness Month

Sipping Lemonade, 3rd October 2014

... This moment, like so many moments, is just a reminder that much of the sadness I felt those first days after Kate was born was based on unfounded fears. I grieved the little things that I thought I had lost — when in reality, our family has gained all of that and more ...

Beyond Awareness: National Down Syndrome Acceptance Month

Meriah Nichols, Huffington Post (blog), 1st October 2014

October is Down Syndrome Awareness Month here in the United States. I'm personally not out to promote awareness anymore, because we are there already. We are aware.

Family raised daughter with Down syndrome before aid was available

Michael Reschke, Herald-Times Online, 6th October 2014
It’s hard to say how the decisions you make today will shape tomorrow, but at 83, Tim Hines has had some time to think about his ... “We had both been raised to deal with what was there, which is a blessing by itself,” he said. “We, it just never entered our minds that we would do anything other than try to bring her along.”