31 for 21: Day 6 ~ The Buddy Walk

In 1995, the National Down Syndrome Society started the Buddy Walk - an event to raise funds for research and to promote acceptance and awareness of Down syndrome. That first year, 17 walks occurred throughout the country; this year, over 300 are expected to take place.

In 2010, over 285,000 people raised more than $11.2 million to benefit local programs and services as well as national advocacy initiatives. This year, my family ~ new to the Down syndrome community ~ is doing it's part and participating in our local walk.

Here  is the link to the National Down Syndrome Society's page regarding the events if you'd like further information. If you'd like to support my team, which is walking on Saturday, October 8, 2011, you can visit our fundraising page here.

Thank you for taking the time to read this post and I hope that you'll be inspired to donate or participate in your local Buddy Walk!

31 for 21: Day 5 ~ Wordless Wednesday

This expressive son of mine is clearly communicating his feelings regarding tummy time today...

31 for 21: Day 4 ~ The "R" Word

Encarta World English Dictionary defines mental retardation as: "an offensive term for difficulty in learning or functioning independently." Approximately 100 years ago, the medical community adopted this term to describe someone with an IQ (intelligence quotient) below 70. By the end of the 20th century, the term "retarded" was popularized in common slang to refer to any random thing, person or action which was not normal, of lesser quality, or perceived to be "stupid." As a result, the clinical term fell out of favor because it was tossed around so casually, without consideration for how it might injure the feelings of those affected by cognitive impairment. Today, those aware of the sensitive nature of this issue prefer to use "cognitive impairment" or "intellectually disabled" to explain the limitations in learning or thinking processes.

Unfortunately, there is still a portion of the population who still use the "R-word" in casual conversation, often times offending those who love someone with a cognitive disability or the individual themselves. In March 2009, the Special Olympics began a campaign called, "Spread the Word to End the Word" in which people pledge the following: "I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities."

To date, over 224,000 pledges have been made online. Won't you visit the website here and pledge to do the same? When you're done, check out this PSA which drives the point home...(warning: there are slurs used in this PSA for demonstrative purposes only - children should view only with a responsible adult)

31 for 21: Day 3 ~ 21 celebrations of cuteness

When I first suspected Levi had Down syndrome, I was terrified I wouldn't think my little baby was going to be cute. Apparently, I was too wrapped up in my worries (for a few days) to be seeing clearly. Here are just 21 examples (I could provide so many more) of his adorableness, which Levi clearly possesses!

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Fast Fact of the Day:  All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

31 for 21: Day 2 ~ It's All in the Wording

This topic was courtesy of my husband's suggestion! Thank you, Honey...

My husband and I suspected since his birth that Levi was going to be diagnosed with Down syndrome. It took 11 long days to get confirmation of our suspicions and once we had it, we weren't sure of what to do with it. Should we tell everyone who would know Levi? Should we keep it a secret, disclosing it only on a need-to-know basis?

As a parent of a child with such a defined condition, and one which is usually fairly apparent simply by observing the individual, choices such as this can be difficult. On one hand, we wanted to simply put it out there so that we wouldn't have to go on explaining why he looks a little different or why he might be behind in development. On the other hand, it doesn't seem fair to him to label him so publicly at such a young age. In the end, we decided that it would be simpler to make a general announcement to those who would be interacting with or seeing Levi on a regular basis as well as our extended family. For everyone else, if they asked, we'd tell, but wouldn't be making a 'big' deal out of it.

Once we made the announcement, there was definite relief for some friends and family who noticed differences but didn't know how to approach us about it. Occasionally, people (strangers, acquaintences and family/friends alike) will refer to Levi or people in the Down syndrome community-at-large as Down's kids or Down syndrome kids. It's often an innocent error, but it can be hurtful to hear more emphasis placed on my child's diagnosis than him as an individual.

There are so many rules to follow these days in trying to be politically correct, but really what it boils down to is making considerations to be conscious of the feelings of other people. To refer to a child as a Down's kid as opposed to a child with Down syndrome is putting the diagnosis before the person and that just isn't right.

I wouldn't approach a patient in an oncology office and ask them about cancer people. If I wanted to talk to them about cancer, I would speak about people with cancer. I also have a child with an autism spectrum disorder and I don't refer to him as my autistic child. It may seem like an inconsequential difference to someone who doesn't know a person with one of these conditions, but if you are someone or care for someone who does, it can be significant.


From what I've seen, it seems as though people in the Down syndrome community are rather open to answering questions asked from an honest desire to learn. I know that personally, I don't mind just about anyone stopping and asking a question as long as it's tactful and not just for the sake of being nosy. But please, please remember that adults and children alike are people first ~ it's all in the wording!

Here is a link to the National Down Syndrome Congress's information on "people first" language; please do take a look...  People First Language

31 for 21

Grab This Button

Guess what?!? October is Down Syndrome Awareness month! And the blogging community is committed to providing 31 straight days of information about Trisomy 21, the medical term for Down syndrome.

When I began blogging a short time ago, I felt a huge need to unburden myself with my thoughts and feelings regarding Down syndrome as it pertains to my child. Those feelings are still there occasionally, but my healing process has begun (thanks in part to this blog) and so the urgency to unload isn't there quite as often. But that's good news because now my posts can reflect the "normalcy" of our life, despite having children with special needs and I can be useful and help others understand these issues in a more positive light. Educating others to promote acceptance is my long-term goal.

So for the next 31 days, I will be providing information about Down syndrome, sure to include facts, theories, links to amazing blogs and hopefully even a little bit of humor! Stay tuned...

Today's Fast Fact:  Trisomy 21 occurs when a person's genetic makeup contains three copies of the 21st chromosome. A typical person's genetic makeup contains only two copies of this chromosome. All together, a typical person has 46 chromosomes; a person with Down syndrome has 47 chromosomes. This means that a person with Down syndrome has a 2% difference, genetically speaking, from the typical individual. They are more alike than different.... and THAT is something that a person with Down syndrome (and those who love them) would want you to remember!

Another Great Blog to Peruse: A Perfect Lily. The mom writing this blog has 10 children ~ ten! Her youngest, an adorable little girl named Lily has Trisomy 21 and she writes all kinds of interesting thoughts about her experiences. Check it out!

Wordless Wednesday

What a growth spurt looks like in our house... observe below (and repeat many times!)

drinking up some of the pumped milk because mommy can't keep up with the demand!