Come Join Us Nov 15th at Buddy Walk

It's that time again for the 15th Annual Buddy Walk.  Come join fellow families as we promote awareness and inclusion of Down Syndrome.  From what I hear, there is tons to do.  I'm trying to make it out and so should you.  It'll be a great event!  Visit DSALA's website:  Buddy Walk Website for more information.

All Aboard!! DSALA Sponsored Event

ATTENTION ALL MOMS - and sisters, aunts, grandmothers, caregivers - any woman who "mothers" a person with Down syndrome, or other developmental disability! Do you feel like you'd like to give yourself a "time out?" Is your child's (could be an adult child) social life filling your calendar? If this describes you, it's time to get away.

The Down Syndrome Association of Los Angeles is sponsoring a "Moms Need Moms" Cruise. This will be a 3-night cruise aboard the Carnival Paradise to Ensenada, Mexico. We leave on January 29 and return on February 1, 2010. This will be a chance to network with other women who "get it," as well as a chance to relax and get a break from the responsibilities of every day life. We will get together the first evening for introductions and they you are on your own to do what you want. There are plenty of activities available to keep you busy, or you can spend your time at the spa or just sitting on the deck doing nothing at all.

All fees are based on double occupancy. If you don't know someone else sailing with us to request as a room mate, we will be happy to set you up with one.

DSALA mom Dana Young has agreed to be the organizer for our cruise. If you have questions, would like to know about the fees (starting under $300 thanks to DSALA) or would like to sign up for the cruise, you can contact her at dana@dsala.org.

A $100 deposit is due by July 22, 2009 to confirm your reservation.

Download credit form for deposit here

Men, this would be the perfect holiday gift for the woman in your life. No shopping required!

Run. Get Your Refund!

So over the past couple of days, I've heard about the refund Disney is offering for their Baby Einstein products. The claim is that the products do not in fact result in smarter babies. Parents are outraged because they believed they had found a wonderful dual purpose product that would keep their child busy and make them smarter all at the same time. Hey I have a couple of Baby Einstein products so I'll be sure to get my refund. Truthfully, I'm shocked that Disney is making this gesture in light of the economy. Let's see what financial impact this will have on the company if any. Looks like their marketing ploy backfired on them and now they have to foot the bill.

For more info go to: Baby Einstein Homepage

Children's Health: Making Life Better For Families with Autism

CHILDREN'S HEALTH Making Life Better For Families Living With Autism

(NAPSI)-As many as one out of 91 children today are diagnosed with autism and the need for effective treatments continues to grow. Getting the right support at the earliest stage in life makes all the difference. Known as early intervention, this critical type of service gives children the skills they need to be successful. What should you do if you think your child has autism? Here are a few suggestions: • Trust your instincts. • Talk to your pediatrician. • Find out about early intervention. "We know that through early detection and individualized intervention, children with autism make significant progress," said Patricia Wright, MPH, Ph.D., national director autism services, Easter Seals. Fortunately, a new grant will help advance professional training for Easter Seals' therapists. The CVS Caremark Charitable Trust recently awarded a $310,000 grant to the organization to advance proven autism services for young children nationwide. The grant, made possible through the company's All Kids Can Program™, is in response to recent findings from Easter Seals' Living with Autism Study. These funds enhance the more than $8 million already provided to the organization through the All Kids Can Program, in which Easter Seals is a national partner. Families living with autism not only require access to services, but also appropriate insurance coverage for these critical treatments. A portion of the gift will underwrite a study by Georgetown University's Health Policy Institute to advance resources to families living with autism. Established in 2006, the CVS Caremark All Kids Can Program selected Easter Seals as a national partner in the five-year, $25 million initiative to support children with disabilities. The grant will benefit children with autism at Easter Seals in central and Bay Area California, south Florida, north Georgia, the Chicagoland area, central and southeast Ohio, southeast Pennsylvania, northern and Rio Grande Valley, Texas, and southeast Wisconsin. For more information about living with autism, visit www.easter seals.com or www.actforautism.org. Families living with autism not only require access to services, but also to appropriate insurance coverage.

Download high-resolution, print_quality graphic and MS Word document Word Count: 336

Making Your Child's Room a Safe Zone

As my son has grown from a baby to a toddler to a school-age boy--his room space needs have changed.  What he needs in his daily life has become more specific which has caused me to become an interior decorator in a sense.  So the first challenge is that my son butts his head on anything he can find while he is sleep.  It's sort of a soothing mechanism.  He also has a lot of sensory needs...he likes to chew on things, feel vibrations, and rock.  As a diaper digger, we needed easy to clean fabrics.  Lastly, he likes to explore, pull down things, and rearrange furniture so safety is a huge issue.  So here is what I discovered on my room decorating adventure.

For the head butting, I purchased the colorful foam mats for the floor.  They are easy to install because they connect together like a puzzle.  I purchase gymnastic mats for the lower level of the walls and used velcro to attach.  This ensured that he would not injure himself on the floor or walls.

For sensory, you can attach different fabrics and items to the wall so your child can explore.  If your child chews or mouths items like my son, I put the items in a plastic shoe container and did it as an organized play time.  He was able to touch feathers, beans, rice, blow bubbles, etc.  For the rocking, I purchased a rocking chair as well as a mini trampoline for his room.  Another great idea, is to fill up a playpen with those colorful plastic balls to make a ball pit.  I was also able to find these great handheld toys that spin and light up so that he could mouth them and feel the vibrations.

If you need easy to clean fabric, try purchasing pleather or vinyl fabrics.  They have child-size chairs and couches that come in handy and are worth the money.  I purchased a fold out cushion chair that turns into a bed...dual purpose is always the way to go.

For safety, I mounted my son's TV on the wall.  I also cleared out most of the furniture and only left a couple of pieces for storage purposes.  If you have a child you likes to pull everything out of drawers and cabinets, find furniture on rollers and turn it towards the wall when your child is playing in the room or going to bed at night.  This will prevent access.  If you have any other clever ideas, please share.  I'm sure other parents would love to get some free room decorating advice :)

Check out these items:

           

Help! I Need Daycare.

You look in the yellow pages, you search the internet, and you drive past a ton of daycare centers on a regular so who would think the search would be so difficult.  Finding a suitable daycare for your special little one can be the most difficult search of your LIFE!  Not just anyone can care for a special needs child.  It takes patience, the right environment, and the know how to handle unique situations that will arise.

I've run into the daycare problem many times.  My most recent search occurred a couple of months ago when I landed my dream job.  While my son typically attended AbilityFirst, a facility specifically for special needs kids, it wasn't going to work out due to their pick up time of 6pm.  I would never make it on time to pick my son up so the search began.

Global Down Syndrome Foundation

Quincy was in Denver this weekend for the 2009 ‘Be Beautiful Be Yourself Jet Set Fashion Show’, raising awareness and support for Down syndrome research and care. The Global Down Syndrome Foundation fundraiser raised $1.35 million benefitting the Linda Crnic Institute for Down Syndrome at the University of Colorado’s Anschutz Medical Campus.

Quincy received the first ever Quincy Jones Exceptional Advocacy Award at the event. In a surprise moment for the audience, Quincy bestowed the Quincy Jones Exceptional Self-Advocate Award on DeOndra Dixon, Jamie Foxx’s younger sister, who has Down syndrome. Dixon is a Special Olympic medalist who has won an award for poetry, balances school and work and is a role model for young people with Down syndrome.

Down syndrome is the most frequent chromosomal disorder in the United States accounting for 1 in 733 live births. There are more than 400,000 people in the US and millions worldwide with the condition. Despite the frequency it is the least funded genetic condition by the National Institutes of Health. In 2008 Down syndrome accounted for just 0.0006 of its $28 billion budget. For more information on this event, click HERE.

-Courtesy of www.quincyjones.com

Ouch! My Back!

For those who know me, my back injury has become the vice in my life. In 2006, I was clumsy and slipped on a rug while carrying my son. My son was 5 yrs old and while most would not carry their children at that age...my son has special needs and plus it was late at night and he was sleep. So you can imagine the strain this accident caused on my back. Immediately, I felt something snap in my back but I shook it off and kept going. It was not until later that night, when I felt pulsating in my back, did it alarm me. But one thing I failed to mention is that my grandmother had passed that day so my mind really was not focused on me, we were instead sitting around making funeral arrangements when the pulsating began. I made it through the funeral and as I lay in bed one morning, I attempted to get up and couldn't. I had severe and agonizing pain...it was paralyzing pain. I called for my mom and for some odd reason I thought my leg was dislocated. When I attempted to move my leg, I experienced a sharp pain. I would later find out that it was my disc pressing against a nerve.

I had to use my deceased grandmother's walker and then a wheelchair to make it to emergency. With the help of my mom and aunt, I transitioned from the bed, to the car, and then to the emergency room. The doctor didn't see anything in the x-ray (they had me on a dislocation bed since that's what we thought it was). But luckily, my doctor suffered from back pain himself and knew what it was. He referred me to his chiropractor. After a few chiropractic sessions, I was much better. But these sessions were not for the weak...it was painful to move the herniated disc back into position slowly but surely..not to mention all of the inflammation from the injury.

Real Journey #1-It's What I Do

My typical day is not a "typical" day. Everything from fixing an almost 8 yr old his favorite TODDLER cereal or lifting him into the car or changing a diaper STILL to the extremes such as having a full out battle to make sure he doesn't injure his sister when he gets upset about her crying or his infamous hobby of diaper digging. My day is far from what the standard parent goes through and I dare them to compare. I find myself almost getting upset sometimes when I hear a parent of a typical child complain. Only if they knew what we as parents of special needs kids endure.

But anyway back to my day, after working my 9 to 5, I was anxious to get home. Our evening rituals were going as smooth as silk. That was until Taylor (CJ's 1 1/2 yr old sister) was denied access to something she wanted. She started into her crying and screaming which immediately and like clockwork set CJ off. You see CJ (also diagnosed with DS) has autism so he doesn't process emotions like the rest of us. He internalizes his sister's emotions and then doesn't know how to respond appropriately. His instinct is to "attack" possibly in an attempt to tell her to stop or maybe just because he doesn't know what to do with his body or how to control it when he feels, what we would deem, normal emotions.

The Battle of a Picky Eater

Well my son is 7 years old with a dual diagnosis of Down Syndrome and autism so the texture sensitivities at mealtime are overwhelming. All of these years, he has only eaten the Gerber baby cereal with baby food mixed in. Although a nutritionist has approved his diet as being okay...as a mom it is troubling. We've tried several times before to introduce new foods and textures with no luck. But I had to gear up and try this thing again.

The first trial involved the transition from baby cereal to regular oatmeal. We started by putting one teaspoon of oatmeal into his cereal. Each week we increased the amount and he seemed to love the oatmeal. This morning I only put a thin layer of the baby cereal and the rest of the bowl was oatmeal...HE SCRAPED THE BOWL CLEAN. This week we are trying oatmeal alone. This has been a huge success.

For lunch, I decided to chop up 4 raisins finely. I knew if I put in too many, he would become hip to what mommy was doing. Let me tell you, CJ will sniff and stir through the bowl when he thinks he is being tricked lol. So I added the chopped up raisins and put some fruit based baby food in the bowl to sweeten the food and he ate most of it. I was shocked. The texture of the raisins didn't make him stop eating.

Although it is small progress it is huge for my family. Our food adventures continue........

For fun meal ideas....check out:

GFCF Birthday Parties and Gift Baskets Coming Soon!!!

In partnership with Divine Concepts, we will be providing GFCF party planning services and gift baskets. Please stay tuned for more information. Our children deserve to enjoy the little things in life!!!

AMC Theatres Host Sensory Friendly Films

AMC Entertainment and the Autism Society of America have teamed up to bring families affected by autism and other disabilities a special opportunity to enjoy their favorite films in a safe and accepting environment on a monthly basis.

Autism is a complex neurodevelopmental disability that affects a person’s ability to communicate and interact with others. It often comes with sensory challenges, such as hypersensitivity to light or sound, and children or adults affected by autism may not understand the social boundaries of movie theatre etiquette, such as not talking during the film or sitting still through most of the show.

In order to provide a more accepting and comfortable setting for this unique audience, the movie auditoriums will have their lights brought up and the sound turned down. Families will be able to bring in their own gluten-free, casein-free snacks, and no previews or advertisements will be shown before the movie. Additionally, audience members are welcome to get up and dance, walk, shout or sing– in other words, AMC’s “Silence is Golden” policy will not be enforced unless the safety of the audience is questioned. Tickets usually run only $6 at the AMC Del Amo 18, the AMC Ontario Mills 30, the AMC Promenade 16, the AMC Block 30 and the AMC Covina 30. For a complete list of theatres, visit www.autism-society.org.

The Beginning of SSC

Hi Everyone! Some of you may be wondering what happened to Divine Concepts (my marketing and event mgmt company). Well this is what happened....I have now focused my efforts on starting Special Shades of Color--an informational site and network for ethnically diverse parents of special needs kids. You may find that this can also be a useful tool to educate family and friends. It has taken me some time to grasp my purpose with this site so it has been a labor of love. But this is near and dear to my heart since I am also a parent of a child with Down Syndrome--CJ :-) You will definitely get to know more about him, my life as his mother, and as a single parent with the sole responsibility of raising him. So enjoy and you will hear from me soon!

Blessings,
DeJuana