Friday Fun & 2011

Good-bye 2010?!  Are you kidding me? Okay ... 2011 here we come!  I hope you and your families have been enjoying this holiday season. I hope the New Year brings you happiness and many opportunities to make memories with your loved ones. 

In honor the New Year's holiday ... here is something fun for the kids to make and enjoy!

Grab a spoon and toast the New Year with a cool, sparkly dessert that wiggles.

1. Make bubbly Jell-O according to the directions on a box of Sparkling White Grape Jell-O. Be sure to use club soda, seltzer, or ginger ale and follow the tips on the box for getting the gelatin to sparkle.
2. Chill the Jell-O in champagne flutes or parfait glasses. We suggest making these the day of the party, since they might lose some bubbliness if they're made further ahead. Wind a metallic multicolored star garland (available at party stores) up the stem of the glass for pizzazz.

I wish you a safe and happy New Year!

Buddy Play

Oh what fun they had!  Last buddy play the kids made wrapping paper for their holiday gifts this year.  I was so impressed with their creativity!

The idea of Buddy Play is for children with special needs and "typical" children come together as one group, both sides can learn a great deal from each other!

 Everyone has a great time and they walk away with new friends ...

Thank you Miss Bernadette for all your hard work in making this happen.

Sinus Infections

This past summer, my 4 year old with Down syndrome had a runny nose that just went on and on for months. We did two rounds of antibiotics and his nose would clear up while on the antibiotics and stay clear for a week or two following the antibiotics and then it would start right back up again. After the second round of antibiotics when the runny nose came back, the pediatrician didn't want to do antibiotics again but just let it run its course.  However, after 4 weeks of a crazy runny nose that just wasn't improving at all, I consulted the ENT. She said that if the runny nose cleared up while on the antibiotic that it was likely a sinus infection and that he should be considered contagious and that it may just be a resistant strain that would

require stronger antibiotic for longer. She had us come in and took a sample of his mucus from his nose and ran a culture that came back "heavy growth of strep bacteria." She put him on a stronger antibiotic for 21 days and that did the trick.   

Liam was runny nose free for about two months.  Then a cold swept through our family which left Liam with a thick yellow runny nose again.  As per the ENT's recommendation I waited until it had gone on for over 2 weeks and then I made an appointment.  I brought him in on day 18 of the runny nose and again she took a sample to culture.  This time it came back "heavy growth of Moraxella" (apparently a bacteria that commonly causes sinus infections).  Again antibiotics cleared it up in a few days.  

Liam has had these thick yellow runny noses that go on and on in the past and it was always a guessing game of whether it was a sinus infection or just a "Down's" thing.  The poor guy was suffering needlessly before when we just let it run and run.  I am so thankful for this new protocol of getting cultures done when his nose runs for more than two weeks.  It makes so much more sense to actually find out what is going on and whether he has developed a bacterial infection. And I am so grateful to no longer be wiping his nose constantly!

Barbie, Batman, and Backyard Safari …

I know I say this every year – and I will say it again, I just can’t believe how fast the Holidays snuck up on me this year! The food, the family and friends, and the most important part to every child – the Gifts!


My brother is 12 … and he lets you know EXACTLY what he has had his eyes on all year, but for the younger ones sometimes its hard to buy for them.


There is a link that I like to share with all parents but it is really helpful for those with special needs children too. toys R us has a taken the time to go through what they carry and categorize them into age and ability groups. 

Click here ----> toysrus - differently abled toy guide

"He who has not Christmas in his heart will never find it under a tree".  ~Roy L. Smith

Show and Tell

October is Down Syndrome Awareness Month.

Send Us Your Photos!

October is Down Syndrome Awareness Month.  I am putting out the call to the families of the DSC to send me an email of  your favorite photos and cute facts about your son/daughter to share.  Send your emails to :  Redbride05@aol.com.

I can't wait to see all the cuties!!

2010 Bay Area Buddy Walk

2010 Bay Area Buddy Walk

Come walk a mile with us! Over the last fourteen years, the Buddy WalkTM has become the premier advocacy event for Down syndrome and has become a major platform for inclusion in communities across the country. This year it's at Little Hills Ranch and due to the generosity of Little Hills Ranch personnel we will have access to a full day of family fun with exclusive use of this great facility. Cool activities are included with your registration, like swimming, rock climbing, playground, air brush tattoos, bounce house, volleyball and much more.

Most importantly we will walk approximately a mile together to promote acceptance and awareness for all people with Down syndrome.

Special thank you to the Kiwanis Club of Walnut Creek who has volunteered to do all the BBQ’ng and provide the food for this great event.
Don't miss our concert with Public Eye – A high-energy rock band, specializing in great music, dance-able rock songs from the 70's thru today.

2010 Charity Auction Gala

This was an amazing event that I was so honored to be a part of and capture.  Here are the pictures from the Charity Auction Gala.  It was a beautiful night filled with beautiful people with generous hearts. To view the slideshow from the night click here ---->slideshow

Down Syndrome Takes Center Stage On Fox’s ‘Glee’

When Fox’s “Glee” returns Tuesday night, so too will actress Lauren Potter, who has Down syndrome.

Lauren Potter, left, with co-star Jane Lynch. (Courtesy: Robin Sinkhorn)

Potter appeared on three episodes during Glee’s first season, playing high school cheerleader Becky Jackson. Now, her character will be back for at least two more episodes — the season premiere this week and a second episode airing Sept. 28.

The part-time actress from Riverside, Calif. first learned about the role through the Down Syndrome Association of Los Angeles. Potter auditioned and was chosen over 13 other girls to be on the show.

“I think it was a brilliant idea,” Potter, 20, told Disability Scoop last spring about Glee’s inclusion of characters with disabilities. “It tells Americans that it’s really good to have a daughter or son who has Down syndrome.”

At Buddy Walk, he'll be dancing

In many ways, he's just a regular guy.

Chad Mayer, 30, works as a clerk at the downtown law firm Keating, Muething & Klekamp. He swims, and plays softball, basketball and soccer. He likes ballroom dancing, especially the waltz and swing. He enjoys hanging out with friends, including his girlfriend.
The Green Township resident knows he's different, though, because of what he calls a special gift from God.

He has Down syndrome.

"Things are going well," he says, dressed in slacks, white shirt and tie and frequently flashing a broad smile in a conference room at the law firm. "People like me. I like them. And I like the work."

He won't be working Saturday, though, when the Down Syndrome Association of Greater Cincinnati holds its ninth annual Buddy Walk at Sawyer Point. He and others from A-Marika Dance Co., the Sharonville studio where he takes lessons, will put their dance moves on display for walkers.

The walk, which typically draws more than 7,000 people, begins at 10 a.m. The after-party, including games, food and entertainment, runs until 3 p.m. This year's fund-raising goal is $380,000.


More than a money-maker, the walk is "a day of awareness and celebration of Down syndrome. It really is an uplifting event," says Sally Kennedy Tilow, the association's outreach coordinator.


As uplifting stories go, Chad Mayer's is hard to top.


His mother, Sue Mayer, thinks back 30 years to when Chad, her middle child, was born. She and her husband, Jay, are from Cincinnati but had just moved to Seattle.

"We were told by a nurse to put him in an institution," she says. Indeed, some people offered a bleak picture of what to expect. "He wouldn't read, wouldn't walk, wouldn't do this and that. That was very upsetting."

She resolved to take her son home, love him, and give him every opportunity to succeed.


After the Mayers moved back to Cincinnati, Chad attended a school for people with disabilities until his mother was told there was no one to help her son with reading. So she enrolled him in the Three Rivers Local School District.


"We thought we would keep him in first grade for two years," she says. Chad balked. He wanted to move ahead with his class. The school and his parents let him.


It wasn't always easy, his mother says, but he continued in age-appropriate classes all the way through high school. He was a member of the swim team at Taylor High, where he earned a diploma in 1998. Meanwhile, he was collecting many ribbons and medals through Special Olympics.


He got his first job at age 16, at Burger King. That was important, he says, "so I could start making a living for myself."


He's had a number of jobs since then: Kroger, Thriftway, Bayley Place retirement community, Provident Bank (which became National City). At the law firm, where he's been a full-time employee for two years, his duties include sorting and delivering mail, training new people on the mail machine, stocking copy paper and making an occasional run to court with a co-worker.

"He knows everybody's name," says his boss, Kathy Stanley, the firm's director of clerks. "The attorneys say it's such a nice treat to see him come around. He always has a smile. I don't think I've ever seen him in a bad mood. He's part of our family."


Fitting in is important. Sue Mayer says people with Down syndrome "are like everyone else. They have the same feelings, emotions and they deserve the same respect. They really can accomplish a lot."

So what's left for Chad Mayer to do?


"I am thinking of moving out of my parents' house someday," he says. "Independence is very important to me."

"If he's happy, we'll be fine with it," says his mother, who has never held her son back and isn't about to start now.

The T21 Traveling Afghan

There is a very special blanket making it's way from one family to another all over the world.

The common tie? Down syndrome.

Each family who receives the afghan for one week has a member with T21.

They get the blanket, take photos with their family and pass the blanket (and an accompaning journal) on to the next recipient.

One blanket. Fifty US states. Many countries. Hundreds of families. One common thread.

 

 

The T21 Traveling Afghan Project - PHOTOS

 

There is a T21 Afghan is making an amazing adventure!!

The handmade blanket is traveling from one family to another who has a family member with Down Syndrome. The family member can be of any age, from birth through the senior years. The family can also be located anywhere on the globe.


The afghan will travel from one family to another, along with a journal.

Each family, upon receiving the afghan, takes a picture of their family member with it and we post it on on this blog under the Label "T21 Travelling Afghan". After having the afghan for bit, the family writes a note in the journal and sends it off to the next family,who's address I will email to them.

I would like to see the afghan leave each family within a weeks time. You may certainly ship it out sooner than that, if you prefer! While we would all love to hang onto it for as long as possible, we have a huge list of families waiting for their turn!


I would LOVE to see the afghan hit all fifty states and as many countries as possible! Let's send this baby far and wide to include all the families who would like to participate!


To sign up, please click here.


Please post about this on your blogs, FaceBook, MySpace, Twitter, etc. with a link back to this page. That way we can spread the the word out as far and wide as possible.

Shipping cost will be the responsibility of the sending party, therefore, I will make a smaller sized afghan.

Please feel free to respond or email with any questions, comments or specifics I may have overlooked!

Creed Of Babies With Down Syndrome

My face may be different

But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace



-author unknown

"I only have Down Syndrome sometimes"

Some of you have likely seen this blog link already, but if you haven't it's a FABULOUS reminder that our kids are not to be defined by this pesky and perky extra chromosome.

But we ALL can find some great encouragement through this post. The root argument is that for those of us who are prone to over-parenting ... don't. And don't put them in a box based on a diagnosis... or a character trait... or birth order... or whatever.

I'm definitely not saying you should have a boundary-less parenting philosophy. I think the key is having the wisdom to know when those boundary lines can be pushed out.

Thank you, Dave Hingsburger, for eavesdropping. You shared something we ALL need to hear.

They make, if not the best, a very serviceable eggplant parmigiana. We don't go there often, but when we do, we each always get lunch from the same vendors. As they are at the start of the food court, we grab a table right at the entrance. It's perfect for people watching, eavesdropping and is almost always the source for amusement. The parmigiana comes from the vendor right at the start of the court, Joe gets soup from the vendor next door but one. I grabbed a table just two in, with a chair removed, there is enough room for me to pull in and be out of the way.

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

(Realize that I would have listened irregardless of the boy's Down Syndrome. I would have listened if it was a couple having a spat, if it was a businessman mumbling to himself, if it was someone having an animated conversation on a cell phone. That's what I do.)

So, aside, aside, I listened.


It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.


'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'


They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

Kid Friendly Fish Tacos

Fish Stick Tacos

If your kids haven’t started school already I’m sure they will be soon. Fast, yummy recipes for a week night dinner are always a plus. This one has been kid tested and passed with flying colors so I though I would share.


Do you have a favorite week night recipe that your kids love? Please share! You can email me at redbride05@aol.com and I will be more than happy to post it for you!

Prep Time: 5 minutes
Cook Time: 16 minutes
Yield: Serves 4
Cost per Serving: $1.76

Ingredients

8 6-inch corn tortillas
1 11-oz. box frozen breaded fish sticks
1/2 teaspoon chili powder
1/4 cup reduced-fat mayonnaise
1/4 teaspoon chipotle chili (canned in adobo sauce), seeded and chopped
2 tablespoons lime juice
5 cups coleslaw mix (cabbage and carrots)
Salt
1 cup tomato salsa

Preparation

1. Preheat oven to 475ºF. Line a baking sheet with foil. Stack tortillas in a microwave-safe dish. Lightly dampen a clean kitchen towel; wring out any excess water. Cover tortillas with towel and microwave at 50 percent until warmed, 2 to 3 minutes. Keep covered until ready to use.

2. Arrange fish sticks on baking sheet and sprinkle with chili powder. Bake until fish sticks are crispy, 11 to 13 minutes.

3. While fish sticks are baking, stir together mayonnaise, chipotle, lime juice and coleslaw mix in a medium bowl. Season with salt.

4. Place a tortilla on a work surface and top with a bit of slaw mixture. Add 2 fish sticks and top with a spoonful of salsa. Fold up taco. Repeat with remaining tortillas, slaw mixture, fish sticks and salsa. Serve immediately.


Nutritional Information
Calories:390
Fat:17g (sat 3g)
Protein:13g
Carbohydrate:49g
Fiber:8g
Cholesterol:30mg
Sodium:1301mg

The special place I had envisioned

My dear friends, I am so sorry for showing such neglect to our blog. Life has thrown me a couple of curve balls and as a result – I have not had the time or the energy to make our little site the special place I had envisioned.

 

With the ever growing world of social networking, I wanted the families of the DSC to have a place where they could explore, and express their interests, share information, make friendships, and meet new people.

Our blog has been up and running for almost a year now. My vision for the Blog ... 

• Interact with your friends, families, support groups, etc.
• Let everyone know your child’s accomplishments (the big and the small) , give us updates, share upcoming events and stories. 
• Get the word out on important issues and causes and inspire others to take action 
•  Exchange parenting tips and help benefit the community from your experiences 
• Connect with people in similar situations.
• Help your friends and family with Down Syndrome get online.
• Learn new techniques and mentor new and expecting parents.

Oh yeah, and one of my favorite things in the world – PICTURES! 

If you want to contribute to the blog or need help with posting please don’t hesitate to ask. Please email me at Redbride05@aol.com.

7th Annual Bowl-A-Rama

COME ON.. GRAB YOUR FRIENDS AND GET A LANE…. WE NEED YOUR SUPPORT AT THIS EVENT! THERE ARE SEVERAL LANES STILL AVAILABLE

You can register up to April 30th
(Call the office (925-362-8660) to register manually if you don’t do computers)
If you have REGISTERED AND created a webpage please remember to email it out to everyone you know.

Come Bowl with Us and Enjoy the Raffle Prizes at the……
7th Annual Bowl-A-Rama
Sunday May 2nd - 12:30pm – 3:00pm
Earl Anthony’s Dublin Bowl

Register your bowlers online NOW : http://www.firstgiving.com/dscba

Cost to register is $25 per bowler and for 2 games, shoes and a custom designed t-shirt.
(bumpers are first come first serve so check the bumper box if you want a bumper lane).
REGISTER BEFORE 4/19/10 TO GUARANTEE T-SHIRTS
This is our first fundraiser of the year. Our target goal is $20,000 and with everyone’s support we can make it happen.
It’s Easy! After registering PLEASE create a fundraising webpage!
Collect pledges for your team or bowler from friends, family and coworkers around the world.
Then please ask everyone to forward your page on to others so they too can collect pledges.

If you would like to be a “Family Lane Sponsor” you can do this on our website at www.dsconnection.org/bowlarama/. Choose “family sponsor” and pick your level.
(Someone from the Connection will contact you for your bowler and t-shirt information)
$250 Family Sponsor: 4 bowlers, 10 raffle tickets, name on the t-shirt and recognition in our July newsletter.
$500 Family Sponsor: 6 bowlers, name on the t-shirt, a 4X6 lane banner, and 20 raffle tickets and recognition in our July newsletter.
(If you have more than six bowlers please call the Connection to reserve a second lane.)
After choosing your sponsorship PLEASE visit www.firstgiving.com/dscba and create a personal webpage to start collecting pledges.
Just choose the “I registered off line” selection.

PLEASE HELP US: 2 times a year we will ask for your support to collect on line pledges (Bowl-a-Rama/Buddy Walk)…. We cannot keep our doors open without
the success of our fundraising efforts. We have worked hard at making it easy to collect donations. Last year the Buddy Walk was a big success because of YOU…….
your families and your friends who gave so generously. Please help us make 2010 a great year by collecting pledges……… and thank you!

REMEMBER: YOU CAN FUNDRAISE FOR THE BOWL-A-RAMA even if you are not bowling!

Lovin Scoopful

There is a brand of light/low fat ice cream called Lovin Scoopful in Safeway and Lucky Stores. If you purchase this product part of the proceeds goes to Special Olympics.

THEIR MISSION:

Lovin’ Scoopful’s goal is to create as many smiles as possible. Not only are we creating smiles on the faces of our customers but also on the faces of so many others that benefit from our donations. Lovin’ donates 25% of its post tax profits ($50,000 minimum annually) to Special Olympics. Ice cream and Special Olympics make for a great foundation on which to build the Lovin’ brand. Ultimately we hope to introduce many products; each donating proceeds to a unique cause that helps power the human spirit.


WHERE TO BUY: (If you don’t see stores in your area below please go to http://www.lovinscoopful.com/ and put in your zip code.

Angels on Stage

Angels on Stage is a non-profit organization that exists to support the special needs community of Northern California. They have been in existence since December of 2007. Their mission is to provide an opportunity for children of differing abilities of any type and degree, ages 5-22, to participate in an annual musical theatre production. (They are incorporated under Section 501(c)(3) and funded by the community, families and some local donors).

This season's musical theatre production will be "The Jungle Book". Angels on Stage will host 6 performances in March 2010 in San Jose, California BUY TICKETS. With 80+ Angels performing this season "The Jungle Book" is sure to delight and entertain audiences.

For more information to to angelsonstage.org

Cognitive Improvement Training

The Silicon Valley Down Syndrome Network is organizing a Feuerstein Instrumental Enrichment Training from 9 am-4:30 p.m. over a 5 day period (Saturday, March 27th-Wednesday, March 31st, 2010) . They are bringing a trainer in from out of state. The training is for parents and caregivers of kids with a neurotpyical age of between 3-8. Parents will be trained to use certain "instruments" targeted at a different area of cognitive development. There are 10 instruments to be implemented over the full course of the program and you will be trained in 5 during this year 1 training. Professor Feuerstein's methodology has been around since the 1950s with numerous studies/research indicating its effectiveness in increasing the overall cognitive functioning level of individuals with special needs, including Down syndrome. The cost is $910. There are only 4 spots left, so if you are interested or want more information you can email me at thehawleyhome@yahoo.com.

Windows Into Heaven

I don’t know if reading more books was on your New Year’s resolutions – but if it was here is a good one to start with.

Edited and published by Stacy and Michelle Tetschner, it is packed with positively uplifting experiences from families and individuals who have a child, grandchild, friend, or acquaintance with Down syndrome. As described on their WEBSITE , "Windows Into Heaven is a collection of stories of inspiration, love, and acceptance from those families and individuals who have been positively touched by Down Syndrome."

In my opinion, the book is a great positive resource for parents beginning their journey, for families already on this road less travelled, for relatives and friends travelling alongside of them, and for people we may meet along the way.


Have you read it? What do you think?

Lisa

Medi-Cal Eligibility

My son, Liam who is 3 years old and has Down syndrome, was made eligible for Medi-Cal through the institutional deeming waiver when he turned one. This was when we were living in Foster City and it was done through the Golden Gate Regional Center. We recently moved to Antioch and when everything was transferred to the Regional Center of the East Bay, they told me that he no longer qualifies for Medi-Cal because he isn't "disabled" enough. I was told that for children under 5 years old, they don't consider independent living, emotional, cognitive or communication deficits. And that to qualify as a 3 year old he would need to have more significant motor delays (even though he is just barely starting to walk at 3 years 8 months of age) or more significant medical issues (such as something requiring medication). Has anyone with RCEB had their child made eligible for Medi-Cal through the institutional deeming waiver prior to age 5? If so, I would love to hear from you.

Laurie