Wednesday, December 28, 2011

Down Syndrome Parenting 101 by Natalie Hale

I tend to stalk all books involving any aspect of Down syndrome.  I pre-order, sign up for alerts and can't wait for the books to arrive on my doorstep.  When I read about Natalie Hale's latest book, "Down Syndrome Parent 101" (available here) I could not wait to get my hands on it.  I arrived just a few days before Christmas and has been my nightly source of calmness and inspiration.

Available at Woodbine. Click here.

She had me early on, but especially in Chapter Six-- Intuition.  She writes, "So what is intuition?  Yogis describe it as a perfect balance between divine wisdom and divine love.  A flawless connector between both of those essential qualities: wisdom and love, reason and feeling, the higher mind and the heart center.  It is like a fine, translucent wire connecting one to the other in a pure stream of energy.  That is intuition."



This insight and beautiful description of what intuition is, "a perfect balance between divine wisdom and divine love" caught my breath.  I inhaled these words and knew that this book was a special gift to enjoy.

Natalie begins the  book by describing "The Yellow Raincoat Theory", which is a reference to the classic slickers that kids in the Dick and Jane books used to wear.  

She says to picture your child with Down syndrome wearing one of those impenetrable yellow raincoats.  "In fact, the raincoat is Down syndrome.  It covers the child; it keeps everything hidden, unknown.   At first, you notice that all the raincoats look alike; after all, most were genetically manufactured in a single factory, located at Chromosome No. 21.  And the 'care instructions' attached to the garments all indicate: See medical protocol on reverse.  Oh, and good luck."

Natalie goes on to explain that it is our job as parents to unbutton the raincoat, roll up the sleeves and find our child who is hidden beneath the raincoat.  She says that, "The Yellow Raincoat Theory postulates that Down syndrome does not completely cover our children, and that it never can.  It is incapable of cloaking forever those brilliant flashes, those thrilling qualities hiding in our children; and so they remain untouched, unaffected and completely outside the grasp of Down syndrome."  

Her book is full of incredible insight and reminders that our children who have Down syndrome also have their own unique personality that is completely their own and that we must allow to shine.  

What most excites me about Natalie's beautiful book is her expertise and insight on helping our children with Down syndrome learn to read.  She describes when she met Greg Zarnecki, who helped her teach her son, Jonathan, to read and how he helped her understand something that she says transformed Jonathan's academic life, "If Jonathan enters kindergarten already reading, the school system's expectations of him will skyrocket."  "Down Syndrome Parenting 101" provides a wonderful list of resources as well as techniques to help teach our kids how to read.

When we attended the Down syndrome Christmas party last year, there was a 12-year-old young girl, Emily, sitting out in the entry way reading a Babysitter's Club book.  At first glance I didn't even notice that she had Down syndrome.  Once I did notice, I almost cried.   Up to that point I had never even considered that Joey might be able to read someday.  We saw her again this year and she was still reading away and told me all about her collection of books.  I also met the mother of a 7-year-old girl who has Down syndrome who is also a big reader.  These examples opened my eyes to the fact that although we may not do things on a typical timeline or sometimes at all, there is a very REAL chance that Joey will be able to read.  To me, this will open his world and provide him a wonderful escape as reading has done for me for so many years.

Natalie's book is broken down into very short and easy to understand and read segments including: Essentials of Your Parent-Friendly Manual, Beginning Years, Discipline Years, School Years, Wahoo! Years and The Last Word.

Interwoven are funny and poignant stories of real people who have Down syndrome and their amazing influence on friends and family.   This is a must-have resource for any parent who has a child with Down syndrome as well as anyone who works in any capacity with people who have Down syndrome.  Natalie Hale has written a well-researched and insightful guide to truly the 101 parenting basics in this amazing land of an extra chromosome.

Happy reading!


Thursday, December 22, 2011

The Meaning of Christmas - You Can Stay at My House

We have an amazing physical therapist.  Every week we go to work with her I am so grateful for her expertise and her ability to push Joey when I want to quit. 


Today was a tough day.  We tried a "stander".  We talked about unexpected things.  That is what they say grief is like-- waves.  It hits you when you least expect it.  That's the way things are with Joey.  Just when I get used to our latest version of "normal" we learn something new that just kind of hits me.  And I get mad at myself.  We see so many little ones at the hospital who have much more difficult issues to deal with every day.  I try to tell myself to suck it up and move forward.  Sometimes, though.  I can't.  I get sad and it hits me.  Today we talked about leg braces and ankle braces.  The good part of that is that we are talking about Joey being able to walk someday, which I fully know he will do, but I also know he and I are going to work really, really hard to make it happen.  I have been so focused on trying to help him learn to crawl that I had put walking way back into a corner of my mind.  That's why the discussion of leg braces took me by surprise today.  Is Joey going to care about having leg braces.  Not at all.  Am I grateful that such things are even available.  Absolutely.  


The counter balance to this was the story our PT told us today about a young man who was finally selected to participate in a Christmas Pageant.  Here is the story as told by Whoopi Goldberg on The View.  







To read Marian Wright Edelman's story about this very pageant, click here.  


This is what the meaning of Christmas is-- opening our hearts and homes.



Merry Christmas!









Numbers - Almost Perfect

Milestone ages mean there are measurements.  Numbers.  Analysis.  How far have we come?  How far should we have come?  Where should we be?  Where are we?  How do we get there?







Joey will be 16 months on the 27th.  In two months he will be a year and a half old.  Time to get a repeat swallow study.  Time to see where he is with his gross, fine, speech, language, nutrition, feeding.  Numbers have already come in.  Some say we are on a 9 month level.  Some say a 12 month level.  It's never the level we are "supposed" to be at, but somehow I know it is exactly where we should be.



















This song is for Joey and me and our journey.  The beauty is that he never feels like this.  Mostly, it's just me trying to get my baby where he needs to go.  It's me who walks away from every appointment wondering if I am doing enough.  Putting in enough time and energy.  Wondering where to find more time and energy.  All I know is that the love I feel for you cannot be quantified by any number.  It is immeasurable.


The title of the song isn't the most lady-like, but the words, like PINK are super powerful...

Pink – F**kin’ Perfect (Clean Version) Lyrics
Made a wrong turn
Once or twice
Dug my way out
Blood and fire
Bad decisions
That’s alright
Welcome to my silly life
Mistreated, misplaced, missunderstood
Miss, no way it’s all good
It didn’t slow me down
Mistaken
Always second guessing
Underestimated
Look, I’m still around…
Pretty, pretty please
Don’t you ever, ever feel
Like you’re less than
less than perfect
Pretty, pretty please
If you ever, ever feel
Like you’re nothing
You are perfect to me
You’re so mean
When you talk
About yourself
You are wrong
Change the voices
In your head
Make them like you
Instead
So complicated
Look how big you’ll make it
Filled with so much hatred
Such a tired game
It’s enough
I’ve done all i can think of
Chased down all my demons
see you do the same
Pretty, pretty please
Don’t you ever, ever feel
Like you’re less than
less than perfect
Pretty, pretty please
If you ever, ever feel
Like you’re nothing
You are perfect to me
The whole world stares while i swallow the fear
The only thing i should be drinking is an ice cold beer
So cool in lying and we tried tried tried
But we try too hard, it’s a waste of my time
Done looking for the critics, cuz they’re everywhere
They don’t like my genes, they don’t get my hair
Strange ourselves and we do it all the time
Why do we do that?
Why do I do that?
Why do I do that?

Ooh, pretty pretty pretty,
Pretty pretty please don’t you ever ever feel
Like you’re less than
less than perfect
Pretty pretty please if you ever ever feel
Like you’re nothing
you are perfect to me
You’re perfect
You’re perfect to me
Pretty, pretty please if you ever ever feel
like you’re less than, less than perfect
Pretty, pretty please if you ever ever feel
like you’re nothing
you are perfect to me
Baby boy-- we are getting there.  One step at a time.  We're in this together.

Thursday, December 15, 2011

Birthday Wishes

Have come true.










Joey's heart surgery and recovery went great this year.






Tommy is happy at his new school.










Tom loves his job.







I love our family and friends.


37 is knocking on 40's door, but I'm grateful for every year and the ups, downs, joy, pain, laughter and even tears that are all a part of life.




All photos today are by Nat.

Cheers!!!



Sunday, December 11, 2011

Forward Motion

Baby boy wants to crawl.  He wants it so bad.  There are things he wants to get his hands on and places he wants to go.




video

We watch and cheer.  Go Joey go!  Lauren caught this on video.  
Nothing like an iPhone to get him moving!

video

Wednesday, December 7, 2011

Down Syndrome Holiday Shopping Ideas

I've been trying to compile a list of gift options that give back to the Down syndrome community in some form.  My requirements are pretty loose.  I look for businesses that either employ people who have Down syndrome or sell goods to raise money and awareness for them.  I also look for goods that are sold by individuals who have Down syndrome-- those are my personal favorite.  I hope to keep adding to the list, so please email me if you would like be included on the list.


Here is a start to the list-- happy holidays and happy shopping!!!


These are the little guys who are top on my list this year.






Cards and posters by Todd Eisinger: Todd and his family have been incredible resources to us.  Thanks to parents like Debbie and Lee, we have a much easier road to acceptance and understanding.  I have one of every card!
http://www.inspires2aspire.com/

Blue Skies:  Her blog is amazing about her daughter who has DS:  http://alittlebluesky.blogspot.com/  and her Etsy store is so much fun:  http://www.etsy.com/shop/lynnatblueskies?ref=em
6x6 mixed media canvas with resist, entitled, "hope"


National Down Syndrome Society T-Shirts: $5 from the sale of every shirt goes to NDSS.  These are definitely going on my Christmas list!!!
Visit http://www.rhymeclothing.com/kid-s-collection/signature-shirts.html to purchase.


Kid's Short Sleeve '3:21' NDSS Signature Gold Tee-Yellow-3T
Reece's Rainbow- Angel Ornaments: These ornaments are sold to help raise money to fund the adoptions of orphans who have Down syndrome.  These babies are amazing.  Click here to learn more.


With a Little Moxie:  This is one of Cowgirl Up's favorite blogging friends.  Their blog is beautiful and their Etsy store is also gorgeous.  Visit: http://www.etsy.com/shop/withalittlemoxie
for beautiful gifts.
sleeping beauty


Joyful Blessings: This Etsy shop sells sensory blankets and super cool Crayon roll up carriers.  Visit them at: http://www.etsy.com/shop/xJoyfulBlessingsx


JEllen's House of Fabric: This beautiful store is located in Lyndhurst, Ohio and their blogs are as beautiful as their fabrics.  This is a mom and a daughter (who has Down syndrome) and their projects and stories inspire creativity.  I hope to go and visit them sometime this winter.  You can visit them at: http://www.jellenshouseoffabric.com/ and also at http://sarahely8989.blogspot.com/.


2010 043a


Hattie's Cafe & Gifts: This is a local organization that is a Hattie Larlham vocation program for adults with disabilities.  http://www.hattielarlham.org/v/cafe-bakery.asp.  If you live in Northeast, Ohio you can visit any number of their locations.  Or, if you aren't local, you can also shop online and still support them!  For online purchases, visit:  http://www.hattielarlham.org/default.asp





Hattie's Café & Gifts Locations

Hattie’s Café & Gifts will meet most special requests for special events, meetings or parties. Please call for more information.
Hattie's Café & Gifts, Hudson
164 North Main Street
Hudson, OH 44236
Phone: 330.655.0044
Fax: 330.655.0048
view map
Hattie's Café & Gifts, Akron-Summit County Public Library
60 South High Street
Akron, OH 44326
Phone: 330.762.0853
Fax: 330.762.0936
view map
Hattie's Café & Gifts, Akron (Canal Place)
520 South Main Street
Akron, OH 44311
Phone: 330.535.1779
Fax: 330.535.1778
view map
Hattie's Café & Gifts Bakery
209 South Main Street
Akron, OH 44308
Phone: 330.253.2655
view map
Hattie's Café & Gifts, Summit County Courthouse
209 South High Street
Akron, OH 44326
Phone: 330.375.1094
view map
Hattie's Café Express, Akron Municipal Building
166 South High Street
Akron, OH 44308
Phone: 330.252.0556
view map
Hattie's Café & Gifts, Stubbs Justice Center
217 South High Street
Akron, Ohio 44308
Phone: 330.375.2691
view map
Hattie's Café & Gifts Deli, Canal Place
520 South Main Street, Suite 2515
Akron, Ohio 44311
Phone: 330.252.8007
view map
Hattie's Café Express, Cleveland*
1275 Lakeside Ave. East
Cleveland, OH 44114
Phone: 216.736.2748
view map



Here are a couple of other blogs that also provide some great resources and lists for supporting individuals with Down syndrome:


Bill and Ria:  http://billandria.blogspot.com.   Their list of Business Owners with Down syndrome can be viewed at:  http://billandria.blogspot.com/2010/10/business-owners-with-down-syndrome.html


Yo Mamma Mamma:  http://yomammamamma.blogspot.com. Her list of Business Owners with Down syndrome can be viewed at: http://yomammamamma.blogspot.com/2009/12/businesses-owned-by-people-with-down.html

Tuesday, December 6, 2011

Harold & Kumar's Cruel Twist on the R-word - Save Your Money



This is not a movie I would ever pay money to go to.  That's what really ticks me off.  While waiting to see Arthur Christmas, we were subjected to the above movie trailer.  Just watch until about minute 1:39 and you will hear them discuss how 3D has gone out of style and 4D is the new thing.  Then, the actor describing 4D says it will "make Avatar look Avatarded."  Yes.  "Avatarded."  A new and very crude take on "Retarded".  


I wish I could have avoided this ridiculous take on the R word, but unfortunately, another night at the movies was ruined by this ridiculous and insulting movie trailer.  


What about the people who have disabilities?  What about the people who are the targets of the word "retarded"?  Should they and shouldn't all of us be able to actually go to the movies and escape?  Why does it always have to be a slam on people with disabilities?


It used to be socially acceptable to slam people who are gay.  It used to be socially acceptable to slam people who are African American.  In our current pop culture, it is apparently still acceptable to use the R word and slam people with disabilities.  I will not rest until this is no longer the environment we live in.  I will not stop blogging about these movies and pressuring people to remove the R word from their films.  


Just last week, Neil Patrick Harris (also in this movie) used the word "tranny" while on Live with Kelly.  Then, he quickly apologized.  I want an apology for this movie and for this new take on the R word.  


How about an apology for Avatarded, Neil?


I'd also like to hear from Kal Penn who I loved on House.  Named the Associate Director in the White House Office of Public Liason in 2009, I wonder how his Executive Director, President Obama would feel about his part in a movie that twists the disability slur "retarded" into "avatarded".


The disability community needs to take a stand and demand that Hollywood catch up to popular culture and remove the use of the word "retarded" as a butt of cruel jokes and innuendos.  2011 has been a blockbuster year of movies using it as such.  The Change Up, Larry Crowne,  The Descendants, A Very Harold & Kumar 3D Christmas, and Friends With Benefits are all the ones I heard it used in.  


Something has to change.  We must demand it for our children, our friends and ourselves.  


Spread the word to end the word.

Spread the Word to End the Word

Sunday, December 4, 2011

Santa's Brother

There's not much I can write about our local Down syndrome Christmas party we attended this weekend other than it was simply fantastic.

Joey charmed ladies from the moment he arrived.











Tommy has started to come to a peace agreement with Santa.







Joey met some friends who are a little older than him.








Joey and Santa had quality time while Joey studied Santa's beard, played with the bells on his Christmas stick and enjoyed each other's company.













I learned about Santa's brother, David.  David, like Joey, also had a congenital heart defect and Down syndrome.  However, back when David was a young boy heart surgery was not even an option. Santa's brother David passed away when he was 16.  Santa had a soft spot in his heart for our little Joseph David and we were reminded again of how far medical care has progressed in just a couple of decades.  


Thank you for making this day so magical for our precious boys, Santa.  This post is dedicated to your brother, David.