31 for 21: Day 10 Ten Things to Avoid to Say to New Parents

The National Down Syndrome Society explains there will be challenges in raising a child with Down syndrome, but there will also be many, many joys. It’s normal to be nervous about what lies ahead, but Down syndrome is a condition the baby has, it is not who the baby is. For family and friends, basic education about Down syndrome will diminish unsavory interactions for new parents and produce greater support.
Ten things to avoid saying to new parents:
10. “You are special people.”
Parents of kids with disabilities are typical. They do well one day and fail the next. They do not want to be on a pedestal.
9. “People with Down syndrome are always happy.”
According to the National Association for Down syndrome the most important fact to know about individuals with Down syndrome is that they are more like others than they are different. No one is happy all the time.
8. “Is it because of your age?”
Statistics point to more moms having children with Down syndrome under the age of thirty-five because women are starting families at a younger age.
7. “Maybe the child will grow out of it.”
Down syndrome is a genetic condition. It is not a disease or a sickness. Interventions and medical care help individuals with Down syndrome live full lives.
6. “Will you have more children?”
New parents are acclimating to a diagnosis. Don’t hurl them into the future with personal questions.
5. “Is he/she high functioning?”
Individuals with Down syndrome have strengths and weaknesses like everyone else. It is unrealistic and unfair to put newborns in boxes of functionality.
4. “She does not look like she has Down syndrome. Are you sure?”
Results of Down syndrome are absolute through a simple blood test.
3. “Did you know ahead of time?”
Pre-Natal screening is a hot topic with Down syndrome. Again quoting the National Association for Down Syndrome: ‘Two types of procedures are available to pregnant women: screening tests and diagnostic tests. The screening tests estimate the risk of the baby having Down syndrome. Diagnostic tests tell whether or not the baby actually has Down syndrome.’ Educated decisions regarding tests are vital but also personal.
2. “It could be worse.”
Processing a new diagnosis is valid. Award parents time to adjust to a different kind of normal for their family with love and support.
1. ‘I’m sorry’ or any statements of pity.
A child has not died. Condolences are not warranted. New parents want the excitement that comes with a new baby. ‘Congratulations’ is an appropriate response.

This post was published years ago by Examiner
I have actually got #4 a lot and it drives me crazy…

2012 Spartanburg Buddy Walk

Its that time of year again….its BUDDY WALK TIME…
We strive to raise awareness that being different isn’t bad, its actually pretty AWESOME!!!! We want to show our support to all of our buddies rockin' that extra chromosome!

Avery is such a blessing and she totally rocks the extra chromosome that God has blessed her with! We would love for you (anyone and everyone) to come out and join us on our team, “Avery's Army” and come walk along with Avery and our other buddies on October 6^th for the 2012 Spartanburg Buddy Walk! Registration and walking is free, but if you would like to donate you can do that through Avery’s first giving page that is up in the corner…Donating through the first giving website is simple, fast and totally secure. It is also the most efficient way to support Avery’s fundraising efforts. OR once again if you are more comfortable just sending a check, you can do that also..checks made out to Family Connection of SC and mail them to me..
When: October 6th, 2012
Where: South Carolina School for the Deaf & Blind ~355 Cedar Springs Rd., Spartanburg, SC
Food and fun activities for the whole family.
You can check out my post from last year if you want to…where it is loaded with tons of pictures!!!
What is the Buddy Walk?
The Buddy Walk was established by the National Down Syndrome Society (NDSS) in 1995 to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome.
The Buddy Walk program has grown from 17 walks nationwide to nearly 300 walks expected in 2012. In 2011, 285,000 individuals participated in a Buddy Walk! More than $11.2 million was raised nationwide to benefit local programs and services, as well as the national advocacy and public awareness initiatives of NDSS that benefit all individuals with Down syndrome.
Today the Buddy Walk program is supported nationally by NDSS and organized at the local level by parent support groups, schools and other organizations and individuals.

What if parents could go back…

International Down Syndrome Coalition for Life asked parents if they could go back before they had, or adopted, their child(ren) with Down syndrome, what would they tell themselves? Parents sent in pictures of themselves and/or loved one holding up a sign with their answers... their bits of wisdom.

They made this video for World Down Syndrome day..It turned out to be a BEAUTIFUL video..check it out..Mine would of said….She will be amazing and bless all of us beyond words..and spread so much JOY and LOVE to everyone she meets..ALL life is precious!!

31 for 21: Day 28

The Beatitudes of the Exceptional Child by Andre Masse C.S.E.
Blessed are you who take time to listen to difficult speech for you help us to know that if we persevere we can be understood.
Blessed are you who walk with us in public places and ignore the stares of strangers for in your companionship we find havens of relaxation.

Blessed are you who never bid us to "hurry up" and more blessed you who do not snatch our tasks from our hands to do them for us, for often we need time more than help.

Blessed are you who stand beside us as we enter new and untried ventures for our failures will be outweighed by the times when we surprise ourselves and you.
Blessed are you who ask for our help for our greatest need is to be needed.
Blessed are you who help us with the graciousness of Christ Who did not bruise the reed and quench the flax for often we need help we cannot ask for.

Blessed are you when by all these things you assure us that the thing that make us individuals is not in our peculiar muscles, not in our wounded nervous system, not in our difficulties in learning but in the God-given self which no infirmity can confine.
Isn't that just beautiful???!!!!

31 FOR 21: Day 23

AMEN!!!!!

31 for 21: Day 22

THIS NEXT POST WAS WRITTEN BY ANOTHER BLOGGER FROM HERE….AND IT IS WAY TO GREAT NOT TO SHARE SO I HAVE TO…PLEASE READ!!!!!  thANKS AND HAVE A GREAT WEEKEND!!! 

My Angry Down Syndrome Awareness Post.

Hooray folks, it's my annual angry post. Get ready, get ready, get ready ready ready.
Some background information. My brother in law (who, at this point, I don't think is dead to me...I'm not sure. I need to keep some sort of file on that) posted this article on our family site:
Down syndrome's rewards touted as new test looms (by Kimberly Hayes Taylor for MSNBC)
Please read the entire article. It's short, it's very well written and I really couldn't have said it better. If you're still unconvinced or too lazy, I'll highlight my favorite parts (I've emphasized the words in bold, not the author of the article):
The article talks about a survey done by by Dr. Brian Skotko, a clinical fellow in genetics at Children’s Hospital, Boston. It suggests that

"...the reality of Down syndrome is positive for the vast majority of parents, siblings and people with Down syndrome themselves

Among 2,044 parents or guardians surveyed, 79 percent reported their outlook on life was more positive because of their child with Down syndrome

Skotko also found that among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome. A third study evaluating how adults with Down syndrome felt about themselves reports 99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked. "

The article then goes on to talk about the new blood test that can tell you whether or not your child has Down syndrome that will be out in a few months. No longer are women going to have to do an invasive amniocentesis to get these results. The fear of miscarrying a "normal" baby because of the test to see if it does have Down syndrome is now gone. A blood test. At this point, studies show that up to 90% of women who do find out that their baby has Down syndrome prenatally choose to abort. 90 PER CENT! I wonder how many more will now abort because they will find out for sure from a blood test, rather than chance it with an amnio.
I'm not here to talk about the right to life, the legality. Currently, women in our country have the freedom to choose whether or not they want to terminate their pregnancies up to a certain, albeit very late, point in their pregnancy. Since Roe v. Wade, no Pro-life president, congress, etc has been able stop this from happening. I'm not going to try to convince anyone about the legality of abortion either way. For now it's a choice.

www.maggab.blogspot.com
I want to talk about that choice. Aborting a child because he or she has Down syndrome is the WRONG CHOICE. Believe me, I've heard every argument under the sun as to why it should be "okay" for women to make this choice. Why, even, we should mourn with them over the "loss" of their child. They did not lose their child. They chose. I'm sick of people treating this issue like it's not black or white. It is. That baby that you carried did not have a disease or another physical or chromosomal abnormality that was incompatible with life. And a good life at that. Look at the statistics! Here are some of the reasons I've heard (also why I've decided to stay off debate forums):

{Not every parent is equipped to have a child with special needs. Just because you can do it, doesn't mean everyone can.}

If you had asked me 7 years ago if I would be able to handle ONE child with special needs, I don't know if I would have said yes. I now have two children with special needs. I wasn't the person I am now going into this. I wasn't given these kids because I was strong, patient or even willing. I was given these children to make me strong, patient and willing. I'm not there yet. If someone like me, someone who is scatter-brained and inherently selfish, can do okay raising two kids with special needs, you can do it with one.
What would happen if your child was diagnosed later with autism? Would you be able to handle it then? In MY (and this is only my experience, I do not speak for anyone else on this) autism is MUCH, MUCH harder. Thank heavens there isn't a genetic test for that. Your chances of having a child diagnosed with autism are six times greater than having one diagnosed with Down syndrome.

{I don't want my child to suffer}

This one probably chaps me the most. My child does not suffer from Down syndrome. Again, the statistic from above: " A third study evaluating how adults with Down syndrome felt about themselves reports 99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked." How many people WITHOUT Down syndrome would say that they were happy with their lives, liked who they are and how they looked? Not as many as these kids! Sure, Abby has health issues. But most of the time, she's fine. And even when she's sick, she's happy. Case in point:

This was in the emergency room at Marybridge Hospital in Tacoma, Washington. She hadn't slept and she couldn't eat because of her breathing. You could hear the rattle from her airways from down the hall. But does she look like she's suffering?
And if you don't want your kids to suffer, you shouldn't have kids. Period. Every kid is going to get sick. Maybe not hospital sick, but they're going to get sick. They're going to have sadness. They're going to experience loss. This is the nature of life. Not of disability.

{ It's the nature of existence, we want close to perfection. Animals will toss aside offspring that have deformities, it helps species survive}

This statement (and it really did come from a human being) should make you taste bile. Becoming a parent is not dependent upon having a perfect child! We, as a society, need to get this out of our heads. Becoming a parent means that we are GIVING LIFE to a child. Taking that child and helping them to do the best they can in whatever sphere that might be.
Because that's what life is about, right? Doing the best with what we are given. What is our goal as a parent? Is it to have a child that is happy? This is what I've learned with Casey and am learning with Abby. I mourned the loss of MY intended vision for Casey's life. I was sad that it wouldn't be the way that I had planned. But this IS NOT ABOUT ME. It's about Casey. It's about Abby. It's about them having a happy, successful life. About them being the best that THEY can be.
If you're having a child to fill a personal need outside from bringing a child into this world so that THEY can have a happy, successful life, you may need re-evaluate your motives. This is not about you. If you just can't wait to brag to your friends all of the things your child has accomplished instead of whether or not they are happy and fulfilled and doing their best, you need to reassess your values. Again, having a child is not about you.
We are not animals. We do not need to kill off our imperfect offspring in order to further the species.

{I heard about a women who was walking out of a grocery store with her daughter who has Down syndrome. Another lady stopped her and asked her why she chose to keep a baby that was only a drain on society. That SHE should not have to pay more taxes because this mother chose to keep her 'defect' of a baby.}

I don't know what I would have done if I were this mother. I probably would have ended up in jail with an assault charge. Or worse. It brings to mind another individual that sought to eradicate a group of people because he thought that these people had no worth. Who was that man? What did he believe?
Down syndrome to some is something that should be eradicated. That some people would be more than happy to see go away. Not because {all} of these people are evil Nazis. They just don't know. They are misguided in their beliefs that life would suck if they had a child with Down syndrome. For everyone. They are wrong and need to know that having a child with Down syndrome makes life sweeter for EVERYONE. I have the numbers to prove it. Having a child with, a sibling with, or even having Down syndrome yourself is a BLESSING. It makes life richer. I am a lucky mom to have Abby. Abby is my happy.
I know because of the demographic of the readers of this blog, I'm preaching to the choir. But I want more. To me, that's what Down syndrome Awareness Month is REALLY about. It's not just about raising money for services that help those with Down syndrome, it's about telling that 90% of women who would choose to abort to think a little bit harder about it. To show people that having a child with Down syndrome makes life BETTER. To show them that they are wrong in thinking anything else but this.
It's what I want this blog to be about. To show people that life goes on after having a child diagnosed with a disability. And then another. That you don't have to be rich, fully sane, or completely devoid of bad habits to have children with special needs. That it's hard, but that it's so good. That if you let this life have a chance, you'll be blessed, and everyone around you will be blessed, too. That you'll become a better, stronger, (faster?) person than you ever thought you could be. I'm not here to say that it's easy. That's why I tell the truth about the good and the bad days we have with Down syndrome (and autism). But I hope you can see that I love my life so much. That I'm grateful for these gifts I have been given. It's like the old man in the wheelchair said to me a couple of Sundays ago:
"Children with Down syndrome are a gift. Don't let nobody tell you otherwise"
If you are someone struggling with the decision as to whether or not to terminate your pregnancy because of a Down syndrome diagnosis, I pray that you will remember these statistics. Also know that there are MANY MANY families out there waiting to adopt a baby WITH Down syndrome. There are waiting lists for this! I didn't plan on having a child with Down syndrome, but if the opportunity came up again to have another with Down syndrome, knowing everything I know, having gone through everything that we have, I'd do it again. In a heartbeat. In fact, I know a bunch of parents of children with Down syndrome who have adopted or hope to adopt another in the future. It's because children with Down syndrome bring such happiness and such love to your life that you want more of it. These kids make life HAPPY. I promise. You are lucky to have been chosen to have this kind of joy in your life.

31 for 21: Day 21 What is Down Syndrome??

Figured Day 21 would be a great day to post this…

Let's start with what it's all about: Trisomy 21.
Chromosomes, those thready bits and pieces within us that are made of DNA and other proteins, in effect, making us who we are. Typical humans have 46 chromosomes, arranged in 23 pairs.
Sometimes, right at conception, little pieces of chromosomes get broken off, come missing, stick to each other or come in multiples, like twins or triplets. Trisomy 21 is that: an extra copy of the 21st chromosome.

The differences in Trisomy 21 lie in the type: there are 3 types:
- Standard Trisomy 21: when the extra chromosome comes from either the egg or sperm cell. Between 90-95% of all Trisomy 21 is Standard.
- Translocation: when a piece of chromosome 21 is located on another chromosome, such as chromosome 14. The person with Translocation Trisomy 21 will have 46 chromosomes but will have the genetic material of 47 chromosomes. People with Translocation Trisomy 21 and Standard Trisomy 21 look the same, have the same types of characteristics. Translocation occurs between 3-5% of cases of Trisomy 21.
Translocation is the only type of Trisomy 21 which may be inherited, and it may be inherited only if one of the parents is a carrier. A carrier will have 45 chromosomes instead of 46 but they will have all the genetic material of a person with 46 chromosomes. Remember that in Translocation Trisomy 21, the extra chromosome 21 material is on a different chromosome. A carrier will have the extra material but will have only one chromosome 21. The carrier will not have any of the characteristics of Trisomy 21 because they have the typical number of total chromosomes. Get it? Yeah, it can be confusing...
- Mosaicism: when a person has a mix of cells, some containing 46 chromosomes and some containing 47. A person with Mosaicism may have some, all or none of the characteristics of Standard Trisomy 21, depending on the percent of cells carrying the extra chromosome and where those cells are located on the genetic map. Mosaicism is rare, occurring in 2-5% of the population with Trisomy 21.
Standard Trisomy 21 is far and away the most common. And it's important to note that extra piece of genetic information is present in every*single cell of the body.
And so... since it's really Trisomy 21, why did it get the kind of off-putting name of "Down syndrome", leading to the "Down's" stuff, like um, "Down's kids" and "Down's babies" and "that Down's guy"?
Trisomy 21 got the syndrome slap-on when John Down published an essay in which he described children with common features who were distinct from others children in his English asylum. In this essay (which I have not read) he evidently made a stunning differentiation between "cretins" (- children with hypothyroidism) and "Mongoloids" (- named after Mongols, apparently because of the extra eye-fold that most people with Trisomy 21 have, lending them a gorgeously Asian glow).
****************
That's why it is. Usually just one tiny little chromosome that jumped on the boat and had some fun duplicating itself. Oh you spry little chromosome, you.
Taken from another fellow blogger (from here)