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blog hop

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Let’s call the Summer Series Over – I think everyone feels too much of a challenge to follow the prompts and besides…summer really is over, isn’t it?

Let’s just have an open blog hop this weekend/week, what do you say? Just share the best of what we wrote this past week, read each other’s posts, make some friends.

Want to discover new blogs? Check out Down syndrome Blogs – The Ultimate Blogroll. Want yours added? Send me the link. I also might add new types of blogs (especially travel, homeschool and disability).

Over and out –

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PS

If you have a post for the Summer Series, the links are all open until the end of September!

If you have a post for the prompts, by all means, post it in this hop!

And last – if you want your post (s) to be in the book, PLEASE send it to me (- just attach to an email – meriahnichols@gmail.com)

meriah nichols blog hop

This week the OPTIONAL prompt is: What I Will Fight For

Like always, you can post a link to your blog post about your visit with Grandma Fifi, your new Instagram feed or whatever else floats your boat (PG and within reason!). Or take an older post and re-purpose it.

meriah nichols bloghop10



Before I forget: 

THE BOOK

I’m going to make a compilation on posts from this series and we’ll sell it for a small sum and donate the proceeds to an organization that we all agree on.

Now, if you have a post or two that you’d like to see in the book compilation, that’s fine. If you have the whole series that you’d like to see in the book compilation, that’s fine. There is no limit or restrictions. Personally, I care far more about quality over quantity.

If you want to participate, just send me this, and if you’ve already sent me the contact form, I’d love it if you sent me your posts via email (meriahnichols@gmail.com)  –

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A quick recap: 

Week One: My Connection with Disability

Week Two: Coming to Terms with Disability

Week Three: A Letter to My Younger Self

Week Four: Talking Raw, Talking Real: Challenges Related to Disability

Week Five: Connections and Comforts

Week Six: VENT! – what pisses you off

Week Seven: Golden Moments

Week Eight: It Changed How I See the World

Week 9: A Challenge: Present a Post in a Way You Don’t Usually – write a poem, post photographs or a painting your made…something that stretches you

* all links are still open if you’d like to participate  *

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I got up around 5:30 this morning to get this post together, but the highly suck-tastic thing about rural Lost Coast life is that my internet access can literally depend on which way the wind is blowing. Or how foggy it is.

It was a no-go clear on until now – and I don’t know how long this is going to last, so I kind of want to hurry and post it (- I’m talking to you, MacQ – you need to get off of my lap and into your nap, boy).

Blogging Series:

This week the OPTIONAL prompt is: How a Connection with Disability Changed the Way I See the World.

Like always, you can post a link to your blog post about your visit with Grandma Fifi, your new Instagram feed or whatever else floats your boat (PG and within reason!). Or take an older post and re-purpose it (- I think I’m going to do that).



right-click save to use this image on your own post
righ-click save to use this image on your own post

Before I forget: 

THE BOOK

I’m going to make a compilation on posts from this series and we’ll sell it for a small sum and donate the proceeds to an organization that we all agree on.

Now, if you have a post or two that you’d like to see in the book compilation, that’s fine. If you have the whole series that you’d like to see in the book compilation, that’s fine. There is no limit or restrictions. Personally, I care far more about quality over quantity.

If you want to participate, just send me this, and if you’ve already sent me the contact form, I’d love it if you sent me your posts via email (meriahnichols@gmail.com)  –

[contact-form-7 404 "Not Found"]

A quick recap: 

Week One: My Connection with Disability

Week Two: Coming to Terms with Disability

Week Three: A Letter to My Younger Self

Week Four: Talking Raw, Talking Real: Challenges Related to Disability

Week Five: Connections and Comforts

Week Six: VENT! – what pisses you off

* all links are still open if you’d like to participate  *

*****

– coming weeks – links not up yet:

Week 9: A Challenge: Present a Post in a Way You Don’t Usually – write a poem, post photographs or a painting your made…something that stretches you

Week 10: What I Will Fight For

Week 11: My Vision of a Perfectly Accessible World Looks Like This

Week 12: Disabled and Proud, And Here’s Why

Week 13: Celebrate! Pieces I Love

*****

meriah nichols aug (5 of 7)

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superman-tired

I caught this guy napping on the couch AGAIN, and she was over in the next room, snoozing instead of writing… and I totally get it – it’s not easy writing or following a bunch of thought provoking prompts when you have little children screaming all over you, crying, moaning, needing, wanting, neeeeeeeeeeeeeeeeeding and perhaps even worse, oozing things like bodily fluids (- if you are potty training? I am, it’s awful).

So how about a break?

We’ll take this weekend to write the posts we’d like to work on from the preceding weeks (all links are open and below), or the coming weeks, or go ahead and email me your posts in document form for the book! (- my email address is meriahnichols@gmail.com).

 

Recap:

Week One: My Connection with Disability

Week Two: Coming to Terms with Disability

Week Three: A Letter to My Younger Self

Week Four: Talking Raw, Talking Real: Challenges Related to Disability

Week Five: Connections and Comforts

Week Six: VENT! – what pisses you off

Week 7: Golden Moments

* all links are still open if you’d like to participate  *

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– coming weeks – links not up yet:

Week 8: How A Connection with Disability Has Changed How I See the World

Week 9: A Challenge: Present a Post in a Way You Don’t Usually – write a poem, post photographs or a painting your made…something that stretches you

Week 10: What I Will Fight For

Week 11: My Vision of a Perfectly Accessible World Looks Like This

Week 12: Disabled and Proud, And Here’s Why

Week 13: Celebrate! Pieces I Love

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The Book

Now, THE BOOK. I’m going to be compiling the posts of people who want to participate in this project and we’ll sell it for a few dollars and donate 100% of the proceeds (- that is, minus the cost of publishing) to an organization we all agree on.

If you have a post or two that you’d like to see in the book compilation, that’s fine. If you have the whole series that you’d like to see in the book compilation, that’s fine. There is no limit or restrictions. Personally, I care far more about quality over quantity.

So, if you want to participate, just contact me using the form right here:

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 thankyouthankyouthankyou

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Hey! We’re back!

First, THE BOOK. We have about 6 people who said they are in (and I’ll be emailing everyone this week to get started).

Now, if you have a post or two that you’d like to see in the book compilation, that’s fine. If you have the whole series that you’d like to see in the book compilation, that’s fine. There is no limit or restrictions. Personally, I care far more about quality over quantity.

So, if you want to participate or have questions that you need answered before you can, just contact me using the form right here:

[contact-form-7 404 "Not Found"]

 thankyouthankyouthankyou

On to the Series!

A quick recap: 

Week One: My Connection with Disability

Week Two: Coming to Terms with Disability

Week Three: A Letter to My Younger Self

Week Four: Talking Raw, Talking Real: Challenges Related to Disability

Week Five: Connections and Comforts

Week Six: VENT! – what pisses you off

* all links are still open if you’d like to participate  *

This week:  

Golden Moments

right-click save this image if you would like to use it with your own post/hop
right-click save this image if you would like to use it with your own post/hop

Golden Moments: the pure joy moments, the moments with unicorns and glitter, or the moments that time just stands still as you look at your child and see their beauty shining. Moments that make you grateful to be alive, moments that you treasure and hold dear.

Is it the old man who reached forth and touched your child’s hair, smiling, and said, “never worry about her; God takes care of His own”, is it the feeling that makes you burst inside when you see your child included and accepted? Or is it YOU, is it how you feel when you make friends with someone with your same disability, someone who *gets* it on every level? Or is it
“golden” as in, “funny”, like the time you were making out and your hearing aids went off on wild feedback and the guy was trying to figure out what the sound was and you didn’t hear it (and even if you did you wouldn’t have done anything since you were trying to pass as non-deaf…) and it turned into this completely hilarious moment?

Golden Moments. Tell us yours. However you want to interpret it. However you want to write about it. Tell it to us.

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The writing prompt is optional:

If you’d rather just post the link to another post you’ve written, that’s fine. You do not need to follow the prompt!



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– coming weeks – links not up yet:

Week 8: How A Connection with Disability Has Changed How I See the World

Week 9: A Challenge: Present a Post in a Way You Don’t Usually – write a poem, post photographs or a painting your made…something that stretches you

Week 10: What I Will Fight For

Week 11: My Vision of a Perfectly Accessible World Looks Like This

Week 12: Disabled and Proud, And Here’s Why

Week 13: Celebrate! Pieces I Love

*****

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download (1)Judy Heumann

…is an attractive woman, perhaps a smidgen above middle-aged. An aura of authority and intelligence is around her, her voice is crisp, clear, firm. She is a strong woman and it shows.

judy heumannShe is also one of the early leaders of the disability rights movement. She affected change on a level that grew to be global – this solitary woman who uses a wheelchair, this teacher who wouldn’t quit. She drove “access” clear on through until it has become a common word.

L-R: Ed Roberts, Judy Heumann and Joan Leon from the World Institute on Disability
L-R: Ed Roberts, Judy Heumann and Joan Leon from the World Institute on Disability

Judy Heumann is an amazing woman, a remarkable woman, a mighty woman.

justindart4

And when I went to hear her speak some years ago at UC Berkeley, I could not stop crying.

I just couldn’t.

I was trying, God knows I was. I was pinching my legs, trying so hard to keep it under wraps because I wanted to make a good impression, I wanted to be awesome and… I couldn’t stop crying.

This is why:

Because Judy Heumann gets this struggle, the whole entire struggle of disability and the disability rights movement on the deepest level that is possible. She gets it. She knows what discrimination is like, what it feels like, how it weasels its way through to your marrow and explodes like a burning cancer. She knows how it is to have people say, “no”, say you are a mistake, say you shouldn’t have been born, she knows how it feels to be outside looking in, uninvited or to have access denied on a regular basis as it’s just not convenient or because someone forgot  – yet  again. She knows these things, by sheer dint of her experience and her contact with so many others with disabilities, through her decades of advocacy and fighting for equal rights.

Surrounded in the room as I was with others who have a connection, with others who know what this is about, this life with disability, this double edged sword of unique experience and unique discrimination, unique life with unique oppression – I couldn’t keep it together. The relief in being with others who know, who get it, was simply overwhelming.

This I think is true no matter how you slice your cake.

If you are gay, if you a minority, if you are a parent of a child with a disability – whatever it is, point being; if you have struggled uphill, against the current, alone, carrying your canoe on your head, you almost faint with the delicious relief of being able to roll with the tide. Meeting people who understand what it’s all about can make inner delight just blow up and dissolve in dollops of rainbows from which dancing unicorns spring forth. I mean, IT DOES NOT GET BETTER THAN THAT. Because you have been alone for so long and tried so hard and cried so much and there were those times in which you just howled because you thought your heart was being ripped because you just couldn’t take this shit anymore.

People who get it: these are for me the comforts and connections of disability.

It’s the people like Judy Heumann, who fight so hard, who represent so much, who speak so clearly. It’s the people like the woman who I met at Kaiser, who had a tattoo of the 21st chromosome on her hand and I knew she was in my club, was a mother of a person with a little extra and got it. It’s the people who I met at NDSC who read this blog and smiled at us in the hallway, it’s the people who supported us in reaching for our dreams as we left the Bay Area for the Pan American Highway.

These are the comforts and connections.

These are the people who are walking with me and share for a while the carrying of the canoe – people who will hold my hand – and I, theirs – as we walk upriver against the current.

And hopefully one day, we will be successful in our re-routing of the river. We  will all be floating easily downstream, laughing together as we paddle our canoes with a current that supports us all.

river

 

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Hey! We’re back!

First, a note of business: THE BOOK. Do you want to participate in a compilation of this series? I think it would be pretty cool to compile the posts, self publish and sell them for a few dollars. All profit will be donated to an organization that we all vote and agree on.

Sound good? If so, I need you to contact me and email me your posts!

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 thankyouthankyouthankyou

On to the Series!

A quick recap: 

Week One: My Connection with Disability

Week Two: Coming to Terms with Disability

Week Three: A Letter to My Younger Self

Week Four: Talking Raw, Talking Real: Challenges Related to Disability

Week Five: Connections and Comforts

* all links are still open if you’d like to participate  *

This week:  

Vent: An Open Letter to Someone/Something Who Pisses You Off

right-click-save if you'd like to use this image on your own post/hop
right-click-save if you’d like to use this image on your own post/hop

 

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The writing prompt is optional:

If you’d rather just post the link to another post you’ve written, that’s fine. You do not need to follow the prompt!



***********************

– coming weeks – links not up yet:

Week 7: Golden Moments

Week 8: How A Connection with Disability Has Changed How I See the World

Week 9: A Challenge: Present a Post in a Way You Don’t Usually – write a poem, post photographs or a painting your made…something that stretches you

Week 10: What I Will Fight For

Week 11: My Vision of a Perfectly Accessible World Looks Like This

Week 12: Disabled and Proud, And Here’s Why

Week 13: Celebrate! Pieces I Love

*****

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Hey! We’re back!

Moving forward with the 3rd Annual Summer Blogging Series with the optional prompts

A quick recap: 

Week One: My Connection with Disability

Week Two: Coming to Terms with Disability

Week Three: A Letter to My Younger Self

Week Four: Talking Raw, Talking Real: Challenges Related to Disability

* all links are still open if you’d like to participate  *

This week:  

Comforts & Connections

right-click-save if you'd like to use this image for your post
right-click-save if you’d like to use this image for your post

This is about the connections and comforts related to your experience with disability – is it the people you meet and know? Is it the wonderful silence that you get when you take out your hearing aids or cochlear implants? Is it how good it feels to fly fast in your wheelchair with the wind in your face? Is it how full your heart feels when you’ve been in the waiting room, waiting for your child’s open heart surgery and there is another mother of a child with a disability there, and she looks up at you and smiles and you know she knows how you feel, and her eyes fill with tears and you start to bawl?

These moments.

Let’s write about these moments!

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The writing prompt is optional:

If you’d rather just post the link to another post you’ve written, that’s fine. You do not need to follow the prompt!



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– coming weeks – links not up yet:

Week 6: Vent: An Open Letter to Someone/Something Who Pisses You Off

Week 7: Golden Moments

Week 8: How A Connection with Disability Has Changed How I See the World

Week 9: A Challenge: Present a Post in a Way You Don’t Usually – write a poem, post photographs or a painting your made…something that stretches you

Week 10: What I Will Fight For

Week 11: My Vision of a Perfectly Accessible World Looks Like This

Week 12: Disabled and Proud, And Here’s Why

Week 13: Celebrate! Pieces I Love

*****

Sign up and receive these posts via email!


Hey! We’re back!

Moving forward with the 3rd Annual Summer Blogging Series with the optional prompts

A quick recap: 

Week One: My Connection with Disability

Week Two: Coming to Terms with Disability

Week Three: A Letter to My Younger Self

* all links are still open if you’d like to participate  *

This week:  

Talking Raw, Talking Real: Challenges Related to Disability

meriah nichols summer series
right-click save to copy and use this image

Disability isn’t always a walk in Mary Poppin’s park of life. It’s not always filled with sunshine, gumdrops and rainbows. There are things that are hard about living with a disability, trying to figure out the puzzle that disability can be, working through prejudice, misconceptions or what-have-you. Or maybe it’s just a pain in the butt when you need your wheelchair fixed and the fix-it person is ALWAYS ON VACATION! Or it’s a challenge getting the right hearing aid, tools to help you access the world.

Whatever it is, write. Just write. This is a safe space.

The writing prompts are optional:

If you’d rather just post the link to another post you’ve written, that’s fine. You do not need to follow the prompt!


 

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– coming weeks – links not up yet:

Week 5:  Connections and Comforts

Week 6: Vent: An Open Letter to Someone/Something Who Pisses You Off

Week 7: Golden Moments

Week 8: How A Connection with Disability Has Changed How I See the World

Week 9: A Challenge: Present a Post in a Way You Don’t Usually – write a poem, post photographs or a painting your made…something that stretches you

Week 10: What I Will Fight For

Week 11: My Vision of a Perfectly Accessible World Looks Like This

Week 12: Disabled and Proud, And Here’s Why

Week 13: Celebrate! Pieces I Love

 BLOG HOP WEEK THREE!

This week in the 3rd Annual Summer Blog Hop series aimed at creating community and sharing voices between the disability and disability-ally (- parents, friends, etc) segments in our shared tangerine of life.

About:

The Blog Hop is a space where you can drop the URL link to a post you have written either on your own blog or another site. It can be based on the optional writing prompts (- a list of which is linked here), or not.

The Hop is open for two weeks, which means you can drop your link at any point in that time.

The Writing Prompt

The writing prompts are optional, but if you follow them, they will carry us all through a narrative arc and we’ll be able to collect all of our posts at the end of summer and potentially publish them.

The prompt for this week is:

A Letter to My Younger Self

– reaching back in time, what would you say to a younger you? If you have a disability, would it be something along the lines of what to expect in life? How things work out? If you don’t have a disability, would it be talking to the you from the moment you received the news that your child has a disability? The you that perhaps felt a great deal of sadness, that wanted to run away or drive off a cliff?

What would you say to yourself, knowing what you do now?

meriah nichols summer blogging series
right-click-save if you want to post this on your blog

 

Code:

You are welcome to copy the code at the end of the hop and host this yourself!

Okay, let’s boogie –


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Summer Blog Hop Series: CHALLENGE!

This is our third Summer Blog Hop Series and there are three ways to participate:

  1. Follow the OPTIONAL narrative arc by following the writing prompts (which are listed  HERE ). Re-working older posts that you have written or just posting the links to those URL’s is an awesome way for some of us to follow the prompts. Or write new posts.
  2. Write and post what you want without following the writing prompts
  3. You can also participate just by reading and sharing the posts!

Notes:

  • The links for each week will remain open for two weeks.
  • You are free to copy and paste the code to host the blog hop yourself!
  • EVERYONE IS WELCOME

Ready?

So this week, the prompt is:

Coming to Terms with Disability in My Life

–  a post about coming to terms with disability in your life (be it as a parent, a person with a disability, etc) – this can be taken in whatever direction you want – as light or as in-depth as you feel like writing about.

Let’s go! (FAQ below the link)



 

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 FAQ’s:

 What is a Blog Hop?

A Blog Hop is like a party for blog posts: we set up a space and bloggers come and add the direct URL links to the posts that they have written. Then they get a chance to meet other bloggers by way of visiting the other posts in the Hop

 How do I join?

You join by adding the direct URL link of a post that you want to include in the Hop.

 What if I don’t want to follow the prompt?

That’s fine. Add the link to another post, even if it isn’t the prompt.

 Do I have to do weird link code things?

Nope! All you have to do is drop the link to your post if that’s all you want to do. If you want to do more, you have the option to code the code and add it to your blog so that you yourself are also hosting the Hop. Up to you!

I just started blogging… can I do this?

YES!!!

I blog in a language other than English… is that okay?

Sure – can you add a feature to your blog to translate it to a language we understand? It would be really cool to read more cross-cultural perspectives – thank you for joining

 I don’t feel like writing new posts but I want to join…

How about re-working an older post? Take a blog post you have published on your blog already, look at it with fresh eyes and re-write pieces of it. Then re-publish it.

any other questions? Email me:

[contact-form-7 404 "Not Found"]

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– grab the badge – right/click save!

meriah nichols summer series blog hop

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Summer Blog Hop Series: CHALLENGE!

This is our third Summer Blog Hop Series, and I want to kick this up a notch. How about it?!

Let’s try and follow a story arc. Let’s try and write our way through the whole arc of our connection with disability, and then let’s gather the posts at the end of the summer series and publish them in a book!

Sound good? Ambitious enough?!

I’m going to include the entire collection of prompts HERE – please make suggestions or tweaks – so that we have time to write the posts in advance or find old posts and re-work the old posts (a practice I highly recommend!)

The links for each week will remain open for two weeks.

You are free to copy and paste the code to host the blog hop yourself!

EVERYONE IS WELCOME

Ready?

So this week, the prompt is:

My Connection with Disability: An Introduction

–  a post about your connection with disability (be it as a parent, a person with a disability, etc)

Let’s go! (FAQ below the link)



 

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 FAQ’s:

 What is a Blog Hop?

A Blog Hop is like a party for blog posts: we set up a space and bloggers come and add the direct URL links to the posts that they have written. Then they get a chance to meet other bloggers by way of visiting the other posts in the Hop

 How do I join?

You join by adding the direct URL link of a post that you want to include in the Hop.

 What if I don’t want to follow the prompt?

That’s fine. Add the link to another post, even if it isn’t the prompt.

 Do I have to do weird link code things?

Nope! All you have to do is drop the link to your post if that’s all you want to do. If you want to do more, you have the option to code the code and add it to your blog so that you yourself are also hosting the Hop. Up to you!

I just started blogging… can I do this?

YES!!!

I blog in a language other than English… is that okay?

Sure – can you add a feature to your blog to translate it to a language we understand? It would be really cool to read more cross-cultural perspectives – thank you for joining

 I don’t feel like writing new posts but I want to join…

How about re-working an older post? Take a blog post you have published on your blog already, look at it with fresh eyes and re-write pieces of it. Then re-publish it.

any other questions? Email me:

[contact-form-7 404 "Not Found"]

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grab the badge!

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This monthly blog hop is a community project. The code is set up so that everyone can participate by adding their link to their post – and host if they want, by adding the code to their own post! So, just follow the instructions through the linky tool (below).

(3):

One truth (about Down syndrome/our lives with Down syndrome OR DISABILITY)

One tip (- information on something related to Ds/Disability/raising a child with Ds/Disability or just parenting in general)

One photo


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Right click save for the 3/21 image!

hop

This is part of the monthly Community Blog Hop, 3 on the 21st. A truth, a tip and a photo. Read more about it here. And join yourself!

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One truth:

Disability isn’t a big deal. Disability is a natural part of the human experience – it’s a chance and an opportunity to explore the world from new vantage points.

Societal attitudes about disability are a big deal. 

A huge deal. An enormous deal. A deal that can make you gasp and can break your heart.

Don’t let it. Just remember that WE are society; each one of us is who a society is made of.

We can change this, we *will* change this.

Each one teach one, we can do it!

 

One Tip:

This isn’t so much about straight-up parenting as it is about a resource: DREDF. That is, Disability Rights Education Defense Fund.

Need help with the IEP? With understanding IDEA? Go to them.

 

One Photo:

"Do It For Me"
“Do It For Me”

PS

Join the Blog Hop HERE

This monthly blog hop is a community project. The code is set up so that everyone can participate by adding their link to their post – and host if they want, by adding the code to their own post! So, just follow the instructions through the linky tool (below).

(3):

One truth (about Down syndrome/our lives with Down syndrome OR DISABILITY)

One tip (- information on something related to Ds/Disability/raising a child with Ds/Disability or just parenting in general)

One photo


This monthly blog hop is a community project. The code is set up so that everyone can participate by adding their link to their post – and host if they want, by adding the code to their own post! So, just follow the instructions through the linky tool (below)

(3):

One truth (about Ds/our lives with Ds)

One tip (- information on something related to Ds/raising a child with Ds/or just parenting in general)

One photo

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One truth:

Just as I’m sure you’ve all heard before, Down syndrome has become waaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaay less important or as big a deal as it was for us even a year ago. Our lives do not revolve around this syndrome, nor does the syndrome even alert us as to its presence very often.

That’s our own personal truth here in this family: Down syndrome… kind of a non-event.

One tip:

Moxie loves to make messes. LOVES! MESSES! She loves – LOVES!! – to pour stuff out and make as magnificent a mess as possible.

What I didn’t get until just recently is how able and willing she is to clean up her messes. Which sort of kind of makes the mess making a little better… sort of. Kind of.

But yeah. When I see that milk spilled now, I just hand her the towel and have her get busy.

(boy, do I ever wish I had tried this sooner!)

One Photo:

IMG_0669
yep… she cleaned it up too!

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PS
Right click save for the 3/21 image!

This blog hop is a community project of Down syndrome Blogs and the T21 Alliance. The code is set up so that everyone can participate by adding their link to their post – and host if they want, by adding the code to their own post! So, just follow the instructions through the linky tool (below)

(3):

One truth (about Ds/our lives with Ds)

One tip (- information on something related to Ds/raising a child with Ds/or just parenting in general)

One photo

*****

One truth:

I’ve never cared much if Moxie will learn to talk.

What I do care about – and have always cared a lot about – is her ability to communicate. I want to be able to understand her and I want her to be understood. I also want her to have a language that she can excel in.

Since speech tends to be a difficult area for people with Down syndrome, and since I’ve seen many people with Down syndrome sign gorgeously, I have wanted to focus on something that I felt sure she would easily be skilled in, rather than focus exclusively on something she would really struggle with and find frustrating.

So my truth here is that I have laid more importance on signing with Moxie than I have with speech.

One tip:

Moxie is fearless with heights and she’s an avid climber. She climbed right out of the crib before she could walk.

So we followed what another friend with a child with Ds was doing and just placed Moxie’s mattress directly on the floor (we took an Ikea kura bed and flipped it over, bunk-style, putting the mattress where a play space would normally be). It’s worked out wonderfully.

** note: She also has sleep apnea and moves constantly throughout the night, so we also set up big cushions around (the mattress, against the walls) so that she also has the option of easily sleeping upright (face forward) on one of them.

 

One Photo:

photo 2


Returning from the bathroom the other day, I saw that My One True Darling Man had given baby Mack some mashed up banana in my absence.

This was it; his first bite of food – my last baby eating something for the very first time.

An event of real significance and I was not there to record each and every second, I wasn’t there to steamroll monitor this “first”, this milestone. And yet, it all happened anyway, and it was fine. Really. It was.

 photo 5

Inclusion and advocacy are like this, I think.

The small moments are the ones in which milestones are reached, “firsts” happen.

It’s not about the drumroll and the flag unfurling in the wind along with a ceremony (although those are nice); it’s the small actions in daily life. Talking to someone with Down syndrome as you would anyone else. Interviewing an applicant with Down syndrome, making friends with people with Down syndrome. Real friends.

In the spirit of the small moments being profound and in honor of March 21st (3-21) being World Down syndrome Day, let’s celebrate with our own 3 truths: one fact, one fallacy and one photo. These can be related to Down syndrome, to the spirit of inclusion, advocacy/awareness – whatever makes sense to you.

I’ll go first.

Fact:

It’s the little things that can count the most.

High five the guy with Down syndrome that you see on Park Street that wants to high five you. Be just as open to making friends with people with Down syndrome (or disabilities) as you are to people without ; then step back and watch as your kids, nieces/nephews/extended family  invite their classmate with autism/Down syndrome/cerebral palsy/who is deaf to your home for a slumber party.

Fallacy:

People with Down syndrome are not beautiful.

That’s the biggest load of hogwash I ever stepped into. For the life of me, I don’t know how this bit of untruth ever got perpetuated to begin with.

Photo:

photo 2

Your Turn!

– links will be live until Sunday, March 24th. You are also welcome to simply add the URL to the (non bite sized) post you have written for WDSD. This Hop will be archived on the Down syndrome Blogs site after March 25th.

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Elections are coming up here in the United States and it seems to be an especially heated one. There is much at stake: health care, veteran and disability services… and more. All sides are riled up, memes are flying and the internets are a'buzz.

I asked my friend Melissa, who blogs at Garden of My Heart if she would write a post on voting, politics and disability. I think the pieces that she talks about are the bottom line that we, parents of children with disabilities (and/or people with disabilities in our own right), need to be concerned about – regardless of what party we are voting for.

I am sharing her guest post in lieu of a link to a post of my own. I think I'm in the hospital right now, recovering from a c-section.

Thank you, Melissa.

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It’s easy to be discouraged by today’s political climate. It seems like there is a lot of name calling and lying and just a lot of behavior we wouldn’t tolerate from our own children, much less the men and women we elect to represent us. It’s easy to tune it all out, and it’s definitely easy to simply not participate. In such a polarized climate it is more important than ever for genuine voices speaking personal truth to be heard loud and clear by our elected officials.

 

I challenge you to participate in the upcoming election. There is incredible power in political advocacy, and especially so in disability world where advocacy is a completely bipartisan exercise.

 

Disability affects each and every one of us. We all have a loved one, a friend, a neighbor, a classmate, a coworker who could fall into this category. It is also the only minority group that anyone could possibly join at any time, and since all of us are aging, even if we do not become part of the disability community, we will benefit from the service system in place for the elderly and those with disabilities. Whether you bleed red or blue or otherwise, disability issues affect us all.

 

Indeed, the rights demanded by the disability community all cross over into the so-called typical world – they are issues of human dignity, not simply how much we can get for our tax dollar, or how many services we can acquire. Access to safe and reliable transportation? Access to the workforce, equal pay for equal work? A way of approaching job placement that better pairs workers with jobs? Access to quality health care?

 

These are all things that are a benefit to everyone in our country.

 

And since these are long-term goals, a bipartisan approach is absolutely essential. Elected officials come and go. They are members of certain committees during one term, in positions of lesser power the next. Perhaps someone you thought was an enemy because they are a member of the “wrong” party has a child with a disability and would actually like to do more for disability advocacy but needs a nudge in the right direction. Or maybe they support these programs already but hearing about an additional angle only bolsters their support. (A good example of this is an elected official who is passionate about veteran issues – there is a lot of overlap with disability issues.)

 

Everyone is a potential ally in the disability advocacy movement. It doesn’t matter their party affiliation, their personal politics, or really even their voting record. Everyone needs to hear our voices’ and our children’s voices.

 

At a time when our country feels bitterly divided, it feels good to advocate for something that is a benefit to all.

 

You don't have to be a policy wonk and you don't have to spend your days at the capital. But we have to participate. We have to pick up the phone, pick up our pens, type out an email. We have to invite them to our homes, to our places of work, to our IEP meetings. We have to challenge them, and question them, and ask them to make good on campaign promises.

 

And above all, we have to vote

*****

So now that we’ve talked about some of the warm fuzzies of political action, here are some ways to get active:

-Find out about the accessibility of your polling place. Do they have accommodations for voters who need the ballot read aloud? Braille ballots? Polling booths that are low enough for people of different heights to use? (including those who use a wheelchair) Entry ways wide enough to accommodate a wheelchair?

-Do the people you know have the proper id required to vote? Is there something you can do to help someone vote? A ride to the polls, assistance in obtaining id? (Read more about issues faced by adults with disabilities here.)

-Watch this video from the National Forum on Disability Issues to get a better understanding of Romney’s and Obama’s views on disability issues.

 -Email, write, call, and tweet candidates at all levels of government. Don’t be afraid to ask tough questions and to be persistent in getting real answers. Disability Rights Wisconsin compiled a good list to start with here. (contains Wisconsin specific statistics, but the questions themselves apply nation-wide)

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And now! Time for our FINAL October Down syndrome Weekend Blog Hop!

Please select and share either a new post or a favorite past post by adding the direct URL for the post in the linky below.

 

Blog Hop will be open until Sunday, October 28th, 11:59 Pacific. Blog Hop will be archived on the T21 Alliance and Down syndrome Blog Sites (links below).

For more on what a Blog Hop is, for optional prompts and other information, click HERE

 

HOP ON!

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Blog Hop Code:

There will be a link "get code" at the bottom of each blog hop – it would be great to click, copy and paste the code to your own blog. When you do that, you yourself become a host for the Blog Hop. You help share the diversity of expression, thought and belief in our writing community when you include the voices of everyone else in the Hop.

 

Blog Hop Button:

Share this Hop! The more the merrier! (note: it works in the sidebar, not the main page – but if you have issues, email me)


THANK YOU!

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Other relevant links:

Down syndrome Blogs

T 21 Writers Alliance – The International Alliance of Writers for Down syndrome

facebook page

informal facebook group page

 

 31-for-21:

31 for 21 is a daily blogging endeavor to raise awareness about Down syndrome. To participate and/or learn more, please visit 31-for-21 at Big Blueberry Eyes

 

From NDSS:

The National Down syndrome Society has created a Blogger Guide – which includes links to a preferred language guide, resources and lots of suggestions for doing more – and springboarding to greater action. Check it out HERE.

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October Down syndrome Weekend Blog Hop

Welcome to the October Down syndrome Weekend Blog Hop, in which we all try to raise awareness regarding Down syndrome, connect the Down syndrome blogging community and to inspire our blogging selves with the our collective awesomeness!

 

Those of you that are participating in the 31-for-21 Blogging Marathon, please select the one post you liked best that you posted in the course of the week and share that on the Hop.

 

For those of you that are not participating in 31-for-21, please select either a new post or a favorite past post and share that.

 

Blog Hop will be open until Sunday, October 21st, 11:59 Pacific. Blog Hop will be archived on the T21 Alliance and Down syndrome Blog Sites (links below).

For more on what a Blog Hop is, for optional prompts and other information, click HERE

 

HOP ON!

******************************

Blog Hop Code:

There will be a link "get code" at the bottom of each blog hop – it would be great to click, copy and paste the code to your own blog. When you do that, you yourself become a host for the Blog Hop. You help share the diversity of expression, thought and belief in our writing community when you include the voices of everyone else in the Hop.

 

Blog Hop Button:

Share this Hop! The more the merrier! (note: it works in the sidebar, not the main page – but if you have issues, email me)


THANK YOU!

*****************************

Other relevant links:

Down syndrome Blogs

T 21 Writers Alliance – The International Alliance of Writers for Down syndrome

facebook page

informal facebook group page

 

 31-for-21:

31 for 21 is a daily blogging endeavor to raise awareness about Down syndrome. To participate and/or learn more, please visit 31-for-21 at Big Blueberry Eyes

 

From NDSS:

The National Down syndrome Society has created a Blogger Guide – which includes links to a preferred language guide, resources and lots of suggestions for doing more – and springboarding to greater action. Check it out HERE.

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