Saturday, June 30, 2012

Tommy and Joey's Book Debut: Early Communication Skills for Children with Down Syndrome

Woodbine House is an incredible source for books on disabilities.  We are the proud owners of a variety of books published by Woodbine House including Fine Motor Skills for Children with Down Syndrome, Gross Motor Skills in Children with Down Syndrome and as of last week we now own Early Communication Skills for Children with Down Syndrome.

As described by Woodbine House:

Newly revised and updated, this compassionate and authoritative guide is based on Libby Kumin’s more than thirty years experience working with children and adolescents with Down syndrome and their families. Dr. Kumin draws on her vast experience to show parents how they can support and encourage their child’s speech and language development from birth to age 6 (or when a child can form 2- to 3- word sentences). Parents and teachers learn how to work through characteristic challenges, including hearing loss, intelligibility issues, apraxia (difficulty planning oral-motor movements), or a slower pace of development. Families soon see that many children with Down syndrome are natural and willing communicators.
In a warm and conversational style, the author shares her professional expertise in parent-friendly terms. She uses specific examples of difficulties and successes to illustrate the concepts behind speech and language development, and includes the latest research supporting current early intervention and preschool approaches that can be used at home and in schools.

This third edition of Early Communication Skills features expanded information on the needs of children with apraxia, dual diagnosis of autism and Down syndrome, and updated terminology and information on special education law. An expanded chapter explains how technology and augmentative and alternative communication (AAC) can help with speech and language, foster communication, and provide inexpensive transitional language systems. Over thirty forms are now included on a CD-ROM to be used for assessment, developing treatment plans, and keeping detailed records of progress. Teachers, speech-language pathologists, and parents will love the convenience of printing multiple copies of forms and organizing information for IEP meetings or periodic evaluations.

About six months ago I saw that Woodbine House was looking for photos of children who have Down syndrome to put in their newest edition.  I sent in a few photos of Joey and when we opened the book last week, here is what we found.

In Chapter 13, this sweet boy appears:

Then I turned to Chapter 14 and my heart melted:

Tommy and Joey together.  That's really what it is all about for us.  Two brothers.  No understanding of differences, numbers of chromosomes, motor delays or anything else.  Tommy, you are too young to understand right now just how proud of you I am for what an incredible big brother you already have become.  

Monday, June 25, 2012

Mamas Don't Let Your Babies Grow Up To Be Cowboys...

That's how the old Waylon Jennings' song goes...

Cowboys ain't easy to love and they're harder to hold.

They'd rather give you a song than diamonds or gold.

Lonestar belt buckles and old faded levis, And each night begins a new day.

If you don't understand him, an' he don't die young,

He'll prob'ly just ride away.

Mamas, don't let your babies grow up to be cowboys.

Don't let 'em pick guitars or drive them old trucks.

Let 'em be doctors and lawyers and such.

Mamas don't let your babies grow up to be cowboys.

'Cos they'll never stay home and they're always alone.

Even with someone they love.......

There's something about 90 degree days of summer that make me long to get my boys back to the Cornhusker state.  To finally introduce them to aunts and uncles and cousins who live too far away.  To show them where Mommy is from and where Grandma and Grandpa lived and the farm out past 16 Mile Corner.  It was a possibility that we could go out this summer now that Joey has flight clearance, but instead he will be having one, maybe two eye surgeries and no long Western journeys out to the panhandle of Nebraska.

Their cowboy hats will have to suffice for now.  

What do you want your kids to be when they grow up?  Does it matter?

I wish for my boys that they will find something they love to do so much that it doesn't feel like work and they would do it even if they didn't get paid.  A doctor or lawyer?  I don't know.  If that's what they want.  A chef or a designer?  Now that would come with some real benefits!

What did you want to be when you grew up?  Have you done it, yet?  If not, why not? This phrase might inspire you: 

Black and White "In A Year" print poster
This print may be purchased in the Amanda Catherine [Design] shop on Etsy.
More cowboy moments...whatever these two grow up to be, my heart will never be as full as it is when I catch them playing together.

Tuesday, June 19, 2012

Join Joey's All Stars on July 28th for the Down Syndrome Buddy Walk

It is one of the craziest things.  I have an incredibly difficult time asking people to donate money or time or talent to anything that involves me or my family.  Mind you, I have had no problem asking for donations for the Art Museum, United Disability Services, The Junior League, Stan Hywet, Child Guidance and other organizations, but I have a really, really hard time asking for donations for an incredible event that helps not only Joey, but our family and thousands of other families and individuals with Down syndrome all over Northeast Ohio.

Saturday, July 28th is the 2012 Down Syndrome Buddy Walk to benefit The Up Side of Downs as well as the National Down Syndrome Society.  The walk starts at 9:00am and there is a ton of food as well as entertainment for kids and adults.  It takes place at Progressive Field, Home of the Cleveland Indians and is a one mile walk that around the ballpark in support of all people with Down syndrome.  

By participating in the Buddy Walk, you will make a difference in the lives of individuals with Down syndrome right here in Northeast Ohio.  Every step you take as well as $.93 cents of each dollar you raise will help The Up Side of Downs of Northeast Ohio and the National Down Syndrome Society provide very important services that enhance the quality of life for individuals with Down syndrome and their families.  

Last year was our first walk.  It was an emotional walk.  Only 7 weeks before the walk, Joey had undergone his open heart surgery.  The week after the walk was his first birthday.  But more than that, it was incredible seeing so many family and friends who were out spreading awareness, acceptance and love.

I wish I could take all of Joey's doctors' appointments away.  I wish I could do his therapy for him.  I wish he could just stand up and walk (or even get up on all fours and crawl for that matter).  I wish he could eat and drink without having to worry about his food and drink being "thick" enough to swallow.  I wish he had perfect hearing in both ears.  I wish he could see and that his eyes didn't jitter back and forth.  I wish his leaky valve in his heart would heal.  I wish he could say mama.  I wish every day that I could somehow make his life easier.  That he would be free from all the physical constraints as well as the stigmas that are sometimes associated with having Down syndrome.  I wish I could protect him from bullies and from cruel people.  I wish I could shelter him for the rest of his life.  But, I can't.  Instead, I must give him roots and wings.  Instead, I must help spread awareness and advocate for him.

That being said..... I would never wish for his Down syndrome to go away.  His life has a purpose.  He is an amazing little boy who is full of life, love and energy despite all the obstacles he faces on a daily basis.  

That is the real reason we walk.  We walk to spread awareness and to stand side by side with all the other amazing children and families who also walk in our shoes.  

We hope you can join us.

If you are interested in participating, there are a few of ways!
1.  Join Joey's All Star Team and help raise money.
3.  Buy and wear with pride a Joey's All Stars Team shirt. Shirts are available in Youth S, M, L or Adult S, M, L, XL, 2XL.  Call or email me if you would like to order a shirt.  Long sleeve "tech" running shirts are a $20 donation (cost to make is $15, so a $5 donation goes to The Up Side of Downs), regular t-shirts are a $10 donation (cost to make for us is $6), women's tank tops are a $17 donation (cost to make is $12).  All proceeds from the t-shirts will be donated to The Up Side of Downs Joey's All Stars Buddy Walk team.
Here are some of the T-shirts:

Kid's T-Shirts

Ladies Tank Tops: 

Sunday, June 17, 2012

A Father's Love

I can't say I know what it means to be a father.  I can't say that I understand the pressures a father feels to provide for and protect his family.  I can't say that I understand what it means to worry about running your own business and being responsible for not only your family, but for all the families of your employees.

What I can say is that I have been blessed with having a father who provided, loved and cared for our family growing up.

I have also been blessed with being married to a man who's father provided, loved and cared for him.

Both of our dads worked long days and long hours, but managed to be close to their kids on an emotional level.  Both of our dads prioritized their marriages and then their children, which gave their families a healthy belief in the meaning of marriage and mom and dad.

Tom typically  works six days a week.  Two of those days are "long" days where he is usually at work until about 10pm. But his long hours don't take away from his devotion and care of his family.

He has all but given up his once excellent golf game because of his long work hours and his choice to spend his down time with us.

He stays up late and wakes up early.

Even when he walks in the door at 10pm, he always does the job of mixing all of Joey's bottles for the next day.  Two 5 ounce bottles of water with 2 ounces of thickener, four six ounce bottles of 2% milk with 3 ounces of thickener.  He shakes each bottle until it is perfectly mixed while he reads the newspaper. His nightly bottle making ritual is just one of the many ways he shows us how much he loves us.

His love for his sons is immeasurable. He is our rock through every issue Joey faces. He is strong, even-tempered and patient. He does not worry like I do and if he does, he hides it very well so I don't worry even more.

His patience, laughter and love is what I hope they will learn from him.  His dedication to his family and his hard work ethic is what I hope they will emulate. Will our boys one day be fathers?  It's possible.  I hope so.  The likelihood of Joey becoming a father is extremely rare.  Whether or not they become fathers, I am grateful that they have such a supportive, loving and involved father. The lessons they learn from him will follow them for the rest of their lives.

To have grown up with such a good role-model for a father and to have married a man who is the kind of father I could not have dreamed of is more than I thought possible.

Thank you, Dad.  Thank you, Tom.  Thank you, Mr. T.  Happy Father's Day to all the dads, uncles and fathers.  

How did your dad show his love for you?