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Understanding Disability Benefits for Children with Down Syndrome

373887_348048645209613_1419237733_nThis is a guest post by the website Social Security Disability Help.  All of the resources on their website are free, including a legal consultation.

Understanding Disability Benefits for Children with Down Syndrome

Individuals who have Down syndrome can grow up to lead happy and productive lives. However, achieving independence often requires hard work and assistance. This level of support can put significant strain on a family’s finances.

If your child has Down syndrome and your family is struggling financially, you may be eligible to receive Supplemental Security Income (SSI) benefits on his or her behalf. These benefits can be used to meet your child’s day-to-day needs and can help offset the expenses associated with his or her condition.

It is important to understand that the application process for SSI benefits can be long and complicated.  The requirements are very strict and applicants are screened thoroughly. Even the smallest mistakes or inconsistencies can cause your claim to be delayed or even denied. For this reason, it is in your best interest to research the SSI program and gain a deeper understanding of the application process.

This article will serve as an introduction to the SSI program.

Technical Eligibility

The Social Security Administration (SSA) operates two disability benefit programs—SSI and Social Security Disability Insurance (SSDI). They are not the same and are run very differently. Children will only qualify for SSI under their own record because eligibility for SSDI is based on employment history and tax payments.

SSI is a needs based program that distributes benefits to disabled individuals of all ages who earn very little income and who have few financial resources. Eligibility for SSI is based solely on an applicant’s financial standing. Because children don’t often earn income or support themselves, the SSA will assume that a parent or responsible adult contributes income to support the child. For this reason, the SSA will use the child’s household income to determine whether or not they qualify.  This is called deeming.

The amount of income that will be deemed is based on the number of children in the household, the number of parents in the household and whether all income is earned or unearned.  Learn more about SSI, here: http://www.socialsecurity.gov/ssi/text-child-ussi.htm

Medical Eligibility

In addition to the above-mentioned financial criteria, all applicants must also meet certain medical requirements. These can be found in the SSA’s official manual of disabling conditions—commonly referred to as the Blue Book. The Blue Book is broken into sections, each of which lists different medical criteria for certain disorders. The listing for Down syndrome can be found in Blue Book section 110.06—Non-Mosaic Down Syndrome.

Based on this listing, your child must supply the following medical evidence:

  • A laboratory report of your child’s karyotype analysis signed by a physician or the karyotype analysis not signed by a physician but accompanied by a note signed by a physician stating your child has Down syndrome; or
  • A physician’s report stating that your child has chromosome 21 trisomy or translocation as demonstrated by a karyotype analysis and distinctive facial or other physical characteristics of Down syndrome; or
  • A physician’s report stating that your child has Down syndrome characterized by the distinctive physical features of the condition as well as evidence proving that the child functions at a level consistent with those who have Non-Mosaic Down syndrome.

If your child has been diagnosed with Mosaic Down syndrome, he or she will not be evaluated under this listing. Instead, your child will have to qualify under a listing associated with his or her affected body system(s).

Beginning the Application

An important part of the application process is the application preparation. Your preparation should include the collection of all necessary records and documents. Non-medical records should include financial records, your child’s birth certificate, your child’s IEP or IFSP plan, the Social Security numbers for all household members, and contact information for your child’s schools, teachers, therapists, doctors, and caretakers.

Medical information should include the documentation listed in the Blue Book requirements as well as a history of your child’s diagnoses, treatments, clinical findings, laboratory findings, and a statement from your child’s treating physician that attests to his or her limitations.

The actual application is made up of two forms and an interview. Once you are ready to begin the application process, you should call the SSA immediately to schedule your child’s interview. This is due to the fact that it can take months before the next appointment becomes available. While you wait, you should continue to collect the required information. If you cannot locate certain required documentation you should still go to your scheduled appointment. The SSA will work with you to procure the necessary information. Although one of the two application forms can be completed online, many parents prefer to complete both at the time of the scheduled interview.

Receiving a Decision 

Following your child’s interview you will receive a written response from the SSA stating their decision within the next five months.

If your child’s initial application is unsuccessful, it is important that you do not panic or give up.  You can appeal this decision within 60 days from the date you received your notice of denial.  At this time you can provide additional evidence and documentation to build a stronger case.

Although the appeals process may seem overwhelming, it is often a necessary step toward receiving financial support. In fact, statistics have shown that more individuals are approved during the appeals process than during the initial application. Remain organized and persistent and your child is likely to receive the benefits that he or she needs.

For information regarding the adult application for disability benefits or about the application process for someone with Down syndrome, visit the following page: http://www.disability-benefits-help.org/disabling-conditions/down-syndrome-and-social-security-disability.

Category: Education, Health & Wellness · Tags:

2013- Reflections from a Mom

Nancy Muir


Well as 2013 comes to a close I have 3 things to look back on this year that I will keep close in my heart and then when I need to feel inspired I will just think back on those moments.  Each moment will help me through various journeys I will go on this year.  Many of these journeys I have taken in the past but each time they change – sometimes big changes and sometime little ones but each time the outcomes are different.  I like to think that the changes are for the better that the information that we as a community of families and friends of people with Down syndrome promote helps with that acceptance.  As I walk into our next IEP for our daughter I plan on keeping Luke Barnes’ speech that he presented at the Step Up for Down Syndrome Walk in my head.  When he talked about going to College, traveling and how his parents were told things that he would never do they didn’t listen, or if they did they took it as a challenge.  When he chanted “Yes I can” I will change that chant to “Yes she can”.  When we are told by professionals that she can’t do something I think the first response out of my mouth will be “Yes she can”.  If they give me the same excuses they have given families in the past – that people with Down syndrome can’t do something then I think my response will be “I guess you haven’t meet my daughter because not only can she do it, she will do it.”  She may do it in a different way and it may take her a little longer but then again isn’t that what differentiated instruction is all about.

The next 2 events are the proud mom moments.   The past few months our Friday nights fun has been attending our son’s High School football games for Whitney High School.  Our daughter loves going and cheering on her brother making sure everyone who sits around us know that her brother is number 81 and that he is the kicker.  She then will tell them that he also plays soccer for the school.  She is his #1 fan the president of his fan club – he can do no wrong in her eyes and she is not afraid to let people know.  But what is so funny about their relationship is that no matter how much he complains about the attention she attracts he always looks into the stand to find her and give her a thumbs up when she calls down to him.  When MacKenzie arrives at the games she always lets the cheerleaders know she is there that her bother is #81 and his name is Alex – this is her routine.  She shows them her dance and cheer moves and asking to get her picture with them.  She greets the cheer squad with high 5’s, hugs, handshakes and an infectious smile.

Several weeks ago as we were sitting in the stands watching the game the Varsity cheer squad began chanting “MacKenzie, MacKenzie” a couple of the cheer leaders approached us in the stands and handed MacKenzie a cheer bag containing a cheer T-shirt, foam finger a other cheer necessities.  They asked if she’d like to come down and hang with them until the end of the game.  The smile on MacKenzie’s face was huge and I was so proud of her there, with the cheerleaders.  She greeted them with giggles and that infectious smile that only our children have. They realized that it is the simple things in life that count.

Fast-forward a few weeks.  This past week another group of young ladies again paid our daughter a compliment.  On this Friday night, the Junior Varsity Cheer leaders – during their last home game – recognized MacKenzie for her enthusiasm and dedication to her brother.  These girls had really gone out of their way to make something that MacKenzie would want and use.  They presented MacKenzie with a shirt with WHS Cheer on the front and on the back they put on her brother’s football number, 81, a number she tells everyone at the games and our last name.  She thanked them the best way she knew how – showing them them her cheer routine and ended it with hugs for all the girls.  As we took a group picture MacKenzie stood in the center beaming a gigantic smile.  We returned to our seat and began looking at the other things in the bag and found that some of the girls had written her notes thanking her for coming to the games and helping them cheer.  MacKenzie sat and read the notes from the girls and was just as excited to get a note addressed to her, as she was to get the shirt they had made.

As I watched my daughter beam with pride for being recognized, I realized that we so often take the little things for granted as we often are pushing for acceptance.  Sometimes we need to accept that little steps for us, are big steps for others whom this is something new to.  We can talk about acceptance and all the great things people with Down syndrome are doing but until you actually have the opportunity to meet someone and be touched but him or her you will probably never know.  And as scary as it can be, we as parents need to sometimes take a step back and allow our kids to advocate for themselves and we need to be there for support but they are the ones who will teach others that they are more alike then different.


Category: Reflections · Tags:

2013 Step Up Walk – What a Day!

Thank you all who supported, walked and came out to celebrate Down syndrome! 

What a BRIGHT, SUNNY AND FUN DAY for the Step Up for Down Syndrome Walk – DSIA’s 9th Annual Walk.


The Walk had it all – old friends, new friends, great exhibitors, fabulous volunteers, wonderful entertainment, fantastic food, and……the Walk raised $30,000 that will enable DSIA to continue to provide resources and support within the greater Sacramento area!

Because of the generosity of family, friends, and co-workers, this is just an example of the types of programs that will benefit from your fundraising:

  •        Parent-to-Parent Program
  •        Educational speakers – Dr. Brian Skotko, Sarah Rosenfeld Johnson and Dr. Dennis McGuire
  •        Social events
  •        Medical Outreach Program

Congratulations to all the teams and individuals for their donations and participation. Special congratulations to the following teams:

Dante’s Spunky Amigos – Most Money Raised – $2638.00


       John Michael’s Super Heros  – Most Team Spirit


BIG HUGE Thanks to CCPOA (California Correctional Peace Officers Association) for donating AND BBQing the lunch! It is appreciated more than you know!

To our volunteers – you are the best! Thank you for coming out with a generous heart and big smiles!

Special thank you to Vanessa Acevedo – she set up a bake sale and raised $400 for her team – Eben’s Explorers 

And a GIGANTIC thank you to the Sisterhood – a local group of moms – who put together this GORGEOUS calendar and donated all the proceeds of the sales to DSIA! OVER $7000.00!!!


Didn’t get one? You still can – CLICK HERE

And, speaking of Donations, donations to the DSIA Step Up Walk can still be made until December 31, 2013!


DSIA was honored to have Luke Barnes, a Self Advocate, Sac State Student and Humanitarian motivate us with his speech! He was AWESOME!


Thank you to the following for great entertainment:

  •        Music to Grow On
  •        Dusty’s Puppets
  •        Group Resplandor
  •        NOW 100.5




A special thank you to the following vendors who participated at the event:

  • Alta California Regional Center
  • California Mentor
  • Carly Litvik Music Therapy
  • InAlliance
  • Jane Johnson Speech Services
  • Music To Grow On
  • Neurocognitive Development Lab
  • Pathways to Recreation, INC
  • Reece’s Rainbow
  • Sac City Unified School District Community Advisory Committee
  • UCD MIND Institute
  • WarmLine Family Resource Center
  • Project Ride
  • Tupperware
  • Origami Owl
  • Corner Bikes
  • Bright Children International
  • Camp Recreation
  • Jabbergym
  • Dusty’s Puppets
  • Pacific Dental Services
  • the Sisterhood

And an extra special thank you to our sponsors:

    Wilke Fleury Logo         The Sisterhood T21 Logo
    Sutter Health Foundation Logo         UC Davis Health Systems Logo

Want to share your amazing pictures from the walk, and perhaps see them featured on DSIA’s website and future walk materials? Send your high-resolution pictures to stepup@downsyndromeinfo.org and we’ll send you an image release. You just might see your pictures featured by DSIA!

Lastly, please take a few moments to help us make the walk event bigger and better!! Please answer a few short questions! CLICK HERE to take the survey.

Thank you and we will see you in 2014!


Category: Events, News, Reflections · Tags:

Truth or Dare

Just a brother with two sisters: truth.

Just a brother with two sisters: truth.

Guest blogger: Beth Foraker 

“The great enemy of the truth is very often not the lie, deliberate, contrived or dishonest, but the myth, persistent, persuasive and unrealistic.”  

— John F. Kennedy


Tell me the truth…

stop and really consider it.

How do you feel about Down syndrome?


Does it gross you out?

Frighten you?

Disgust you?

Make you uncomfortable?



Time for a little truth telling.

I’m gonna keep it real and hope you last until the end.


Do you dare?


Down Syndrome is not frightening.

It’s not the problem.

It most certainly does not warrant the death penalty or loss of life in utero.

The problem is the pervasive and concrete-like myths that persist.

Time for a little jack-hammering.


Myth #1:  “They are so happy.”


Ummm….not so much.  Patrick has the full deli counter assortment of emotions: anger, loneliness, joy, confusion, sadness, happiness, calm serenity, extreme excitement, embarrassment, love.

Yes, what ticks him off is not what ticks you off…but isn’t that true of your other friends and family?

He does not sit around in a perpetual dumb happiness every day — in fact, that whole idea is just plain silly.


Myth #2: “They are stubborn.”


People with Down syndrome are under a microscope.

Like it or not, they are held to higher standards behavior-wise than the typical population.

Imagine a line full of kids.

Imagine all of them pushing, poking, and acting unruly.

Who gets nailed almost every time??

Yep, the kid with Ds.

He (or she) is easy to spot…I get it…but it’s a bummer.

Being “stubborn” could also be called being persistent, having perseverance, demonstrating grit (the hip word in parenting if you haven’t gotten the memo)…but almost always, in reference to children with Down syndrome it is labeled “being stubborn”.

I don’t buy it.


Myth #3: “Children with Down Syndrome are a burden.”


Honestly, this is the one that really prevents children with DS from living a full life.

Children (Down Syndrome or not) are NOT a burden.

Every single child on our big blue marble is a remarkable, stunning, one-of-a-kind gift to all of us.

They are gems…rare and beautiful.

How is that burdensome??


Is there more work involved with a child with Down syndrome??


Does that make it not worthwhile??


Don’t you have to dig deep (and hard) for diamonds??

Aren’t our kids more precious than diamonds??


If I could crush this myth into diamond dust I would…because this is the vortex of all prejudice.


If people consider you a burden, then you don’t get equal access.

Heck, you don’t really deserve to live.

If you are trouble, people avoid hanging out with you.

If you are difficult, well then, it’s easy to leave you out, exclude you and close doors of opportunity.


Today, this very day, I spoke to two different moms about their children with Down syndrome and their education.  Both of them are fighting for the chance to have their child fully included in the typical classroom.  One is in second grade, the other in fifth.  One lives in Florida, the other in California.


Honest, gut-level truth right now: their child is not the only struggling student in their class.

Their child could very well be a better reader and yes, a better student, than another child in that class.

Their child is the one singled out.

The one that needs to prove their worthiness to even get access to the regular room.


Because of the pervasive prejudice that continues to this very day.


Here’s my truth and I’ve been a mom to someone with Down syndrome for 14 years…

so, I’m not Polly-anna, crazy-in-love, rose-colored glasses girl…

just a mom who lives with her gem everyday.


This is my truth.

I don’t notice Down syndrome in my child.

I notice Patrick.

I can see him, his whole beautiful self, clearly.

That is the blessing of loving someone.


I don’t believe any myths now about anybody.

Because the myths that people tell me about Down syndrome are so far off the mark that it’s offensive.


My heart got bigger when Patrick was born.

My citizenship with the world was not only renewed it caught fire.


I see myself in every mother…

the one who forgets her child in a car…

the one who doesn’t have enough food in the fridge…

the one who can’t figure out which end is up and is so clouded in judgment she believes not living is an option.


My truth is clear.

But I wonder about the others…

who will share their truth??


Who will dare to consciously, mindfully crush to dust these pervasive, destructive myths.


Only with truth can freedom ring.


You can follow Beth at Grace in the Ordinary


My Trip to My First National Down Syndrome Convention

Katina and Tim

Katina and Tim

Guest Blogger: Katina  Aitkens

On Thursday, July 18,  with Isabel, I went to Denver, Colorado.  When we got there we went to our hotel and then to the Convention Center to get our registration packet.  Then we went to dinner in the theater district.

On Friday, I went to the Friendship Club.  In the Friendship Club we made heart decorations for the dance.  I also went to a workshop with my mom about how to get a job.  On Friday night I went to the 3-21 dance. I danced so much the bottom of my feet were all red.  I had a blast.

On Saturday, I was in the orange group and went to workshops.  I went to Stage makeup, Yoga and Living on Your Own.  I learned a lot about Stage Makeup.  I learned to become a cat with makeup.  At Yoga, I learned how to do the tree pose, elephant pose, and warrior one. I learned how to live on my own doing my own laundry, cooking my own food, doing the dishes and making the bed.

I talked at the open mic. I spoke about my family.  I learned the flash mob dance and we performed the flash mob dance after the last workshop on Saturday.

On Sunday, I went to more workshops.  I performed in the talent show and sang “Baby, Baby “by Justin Bieber.  I met Tim Harris from Tim’s Place.  I want to own a restaurant just like Tim Harris.  Then came the Grand Finale.  At the Grand finale all the parents came and the self advocates were on the stage.  We sang the closing song.

After the convention I went to my first professional baseball game.   We saw the Chicago Cubs play the Denver Rockies.  The Denver Rockies won 4-3.  All of us from the convention sat together.

The best thing about the convention were the workshops.  They were fun and I learned a lot.  I also met Karen Gaffney.  She swam across the English Channel.  I also like to swim.

I made a lot of friends at the convention.  I loved it and want to go next year.

*Note from Katina’s mom.

Since attending the convention Katina has become much more independent.  She also has developed a sense of self care. The day after we returned from the convention Katina called our health club and scheduled her first apt. with a trainer. I didn’t even know she was interested in becoming healthier. She is also preparing many of her own meals which she has not done before.  It is a treat to have dinner waiting for me as I arrive home from work. I encourage parents to have your child attend the self advocate convention once they become fifteen.


Category: Reflections, Self-Advocates · Tags:

Meet Shannon Murphy

Shannon Murphy

Shannon Murphy

I graduated from San Diego State University in May of 2012, with my Bachelor of Science in Nursing.  During my time at SDSU, my involvement with the California Nursing Students Association taught me the power that a group of committed individuals can have, and the personal rewards that come with making a difference in the community.  In September of 2012, I moved to Sacramento to start at the Betty Irene Moore School of Nursing at UC Davis, and work towards my Master of Science in Nursing and Health Care Leadership.  As a brand new Registered Nurse, I decided to take six months to adjust to school and a new city, before finding my first nursing job.  I had been a nanny all through nursing school, and thought it would be a good, predictable fallback for me to pay my bills while I adjusted to my new life.

 Enter: The Phams.

phams xmas

I was supposed to primarily be helping with their newborn twin girls, which was perfect for my background of working in neonatal intensive care.  I would take care of the twins, while Mom, Sheree, took 4-year old Gabby, who has Down syndrome, to speech therapy and to school. Their 7-year old son Cameron was at school all day, missing most of the madness. As I spent more time with the Phams, I fell in love with all of their kids, especially Gabby – my best helper.

gabby help

Gabby defied everything I thought I knew about Down syndrome.  She was smart, funny, caring, adventurous, and social.  In nursing school, I had learned what were considered ‘the basics’ about Down syndrome: it involved intellectual disability, frequent cardiac defects, higher susceptibility to infection, and sometimes leukemia.  In reality, children with Down syndrome do deal with these challenges, but they can do almost everything that other children can, too. Gabby shares with her brother, cleans up her room, and practices changing diapers on her dolls – just like most 4-year old girls. Gabby taught me more about ‘special needs’ in six months than I learned in five years of university.

shannon and gabby

Gabby’s mom, Sheree, was one of the founding members of the Sisterhood, and I was lucky enough to meet other moms who had children with Down syndrome. I was curious about the birth experiences of these strong, amazing women, and learned quickly just how much change was needed.  Many physicians and nurses at the top hospitals in Sacramento were offering nothing but dated, discouraging information, and new parents were left to find their own resources.  My life was missing the community involvement that I had cherished over the past five years, and DSIA appeared in front of me as the perfect opportunity.

Since getting involved with DSIA, President Heather Green and I have been working on a medical outreach project. This includes basic education for both physicians and nurses, the Down Comfortor Package: A New Parent’s Guide to Down Syndrome,  and contact information for the Parent-to-Parent Program. We are currently working to turn the project into a research study focused on the impact of standardizing the process of sharing a new diagnosis of Down syndrome, on parent satisfaction with the hospital experience.

It’s funny the way that life takes you exactly where you need to go.  In April, I left my beloved Phams for my first nursing job at St. Joseph’s Medical Center, in Stockton, CA, and in June, I finished the first year of my Master’s program.  I still see the Phams as often as I can, and am forever grateful for the six months I spent with their beautiful family.  To the Phams and especially Gabby, the girl who taught me so much: thank you, thank you, thank you.

final shannon and gabby

Category: News, Our Services, Reflections · Tags:

DSIA Presents $600 to Luke Barnes


Heather and Luke

On June 7th, DSIA was excited and pleased to present Luke Barnes, the Sac State student with Down syndrome who was scammed out of $600, a check for the money he lost. Click image to watch the News 10 story.

Here is what his family had to say:

Hi there,

I am Leisa Faulkner, Luke Barnes’ mother.

My, what a great thing you have done. I am so pleased that you found a way to turn Luke’s misfortune at Sacramento State University into an awareness raising opportunity. Thank you so much. 
Your support not only helps Luke recover his loss (a full month of SSI support), but you made Luke’s struggle into a news story of positive social change. Your actions made it possible for people to find the best in themselves; to have more faith in their neighbors, to see young people with Down Syndrome as more likely university students, to see a guy with Down Syndrome as a real person that they discovered they not only like but want to lend a hand to, rather than the old image of “those strange kids in the trailer at the back of the school”.

So, thank you. My son Luke is so pleased to find he has so much support, and so are we.

We just wanted to say thanks for all you do, and for what you have done for Luke.

By the way, Luke has been saving his money to return to Haiti in July to do humanitarian work this July with several other “regular” college students, so your support helps him be able to go there again and to continue the important work of letting more people know “our kids” have a lot to offer.

DSIA is still offering a $1000 reward in this case.

Thank you to all who donated to make this possible.


Category: News · Tags:

DSIA Offers to Help Luke

 DSIA Raises $600 and Offers a $1000 Reward 

The Down Syndrome Information Alliance has issued a $1,000 reward for information leading to the arrest and conviction of the two individuals who are alleged to have scammed a Sacramento State University student with Down syndrome out of hundreds of dollars on Thursday, May 16, 2013. The suspects accompanied the victim around the Sacramento State University Campus and had him buy hundreds of dollars in gifts cards with the promise that he would receive 2 laptops in exchange.  After the gift cards were purchased, the suspects took the gift cards and fled. Campus security cameras captured pictures of the suspects.

CLICK HERE to see more pictures

If you have any information about this incident or recognize the individuals in the surveillance pictures, please call Sacramento State police at (916) 278-6851.

If you would like to make a tax deductible donation to the DSIA Luke Burke Fund, please CLICK HERE. We have already reached our $600 goal, and money now raised will help with a reward to find and prosecute these criminals.

CLICK HERE to watch the News 10 story.

CLICK HERE to download and share the Reward Flyer

Watch the Follow Up Story on News 10:


Category: News, Self-Advocates, Uncategorized · Tags:

Meet Rosalinda Gray, DSIA’s Newest Board Member

Rosalinda Gray

Rosalinda Gray

My husband and I began trying for our son in 2010. We were excited to find out right away that I was pregnant with my second child. Six weeks later I sadly miscarried. We began to try again with no luck. After many tests and an MRI of my brain, we discovered I had a condition. This condition was affecting my fertility; however after being put on some medications I was happily pregnant once again. Like many other women we went ahead with the blood testing for all and any conditions during our first trimester. I received a call a week later to come and discuss my results with my OBGYN.

As I walked through the doors to discuss my results, I remember holding my husband’s hand and knowing no matter what the results we weren’t concerned. Our doctor sat us down and let us know that the baby had a 1 in 5 chance of having a child with Down syndrome. At the time I was working with many children through the Yolo Crisis Nursery as well as with Yolo County. I had worked with many children with many different abilities and family situations. Many of these children were not living in the best environments nor had the best resources. I always knew that no matter what I love all children and accepted all for who they are. My goal in life was to change as many children’s and families lives for the better that I could. So when we went to see the geneticist, I wasn’t afraid of whatever the results would be.

The first step after receiving our blood test results was to go see a geneticist. The first appointment and ultrasound that we had with our geneticist Took a very long time. My husband and I sat there watching as the tech clicked and sighed numerous times. We were then told to head to the results room and wait for our geneticist. My husband and I sat in the room discussing what we thought they were going to say, the changes that would be made in our lives and if we cared. I remember that no matter what the results I didn’t feel any different about our amazing baby growing inside of me. My husband however was terrified of the unknown. The geneticist walked in and sat down, again we heard another sigh. My husband looked at me with red eyes and then looked down. Needless to say the geneticist went on to discuss all of the markers that our son had, from the fluid behind his neck the hole in his heart and so on.  We were then told that our one in five chance had shot up to a three in four chance of our child having Down syndrome. My husband looked as if he was going to cry. The geneticist then went on to say that it was confirmed that we were having a boy. My husband looked up at me with his huge smile, I felt myself breathe a little easier.

The geneticist then handed us a pamphlet about an amniocentesis. My husband and I had already discussed that we would decline this beforehand. Due to my recent miscarriage we did not want to chance anything and no matter what we knew we wanted our child. That geneticist went on to list all of the risks that would come if we did not do the amniocentesis. My husband firmly said no that we were not interested, and we would never do an amniocentesis.  The geneticist looked away then look at us stood up and said we only had three more weeks to decide, and then walked out. I was amazed that this geneticist would still push for an amnio. My husband and I made the next appointment to check on our son’s markers then left.

On the car ride home I remember my husband asking me what he should tell his dad, I simply replied to explain the results. I watched a man who I have known for so long and have never seen cry explain to his father on the phone that our child had a higher chance of having Down syndrome. My husband then began to cry, and I looked away. Once we arrived home my husband let me know that he would be calling into work the following day. My husband ended up taking the next two days off. I knew it was his way of mourning the son he thought we would have. I had felt extremely bad for not being able to say that I understood how he felt. I had never felt like that; I just knew that no matter what I was okay and our son would be okay. I did however have a hard time trying to figure out how I would explain this to my 5 year old daughter. Throughout the pregnancy we went on to see the same geneticist five more times. Each time he pushed for us to get the amniocentesis and each time we declined. The final time the geneticist went on to list many horrible things that could come if our child had a terminal trisomy. I remember being told that we could be choosing to have a child who would either not be born alive or would pass away right after being delivered. The geneticist then left the room leaving the nurse. This final time my husband let the nurse know that we did not need to discuss anything with the geneticist and we did not have any questions. The nurse left came back in and let us know that all of the markers that our son had, had normalized and we’re no longer present.

We were very confused and upset at the same time. We could not understand how our child who was previously doomed was now fine. At my next OBGYN appointment my husband and I talked with my OB about the results. Our OB was my saving grace, she called to check on me and always listen to any questions that either of us had. Throughout my pregnancy my family would always tell me not to worry that he would not have Down syndrome. Every time I would reply, “I’m not worried, I don’t care either way.” My mom was always the most concerned. The day came when I was told I had gestational diabetes, having to change how I ate and what I could eat while being pregnant was horrifying to me. Everyone in my life was shocked how upset I was about not being able to eat chocolate when I wasn’t that upset about our babies chances of having Down Syndrome; As much as I was prepared for whatever Dorian would bring I was not prepared to give up my chocolate.

Dorian was born on September 8, 2011, weighing 7 lbs. 13oz. When Dorian was put on my chest I looked down and I knew. My OB then came in the room once everyone left gave me a hug and asked if I was okay. I was more than okay I was deeply in love with my son. My husband was overjoyed and a proud father. That same night Dorian stopped breathing and was then transferred to the NICU at UC Davis. The first year of Dorian’s life had many ups and many downs including open heart surgery at seven months. Dorian’s older sister Isabella never had any problems with Dorian’s diagnosis; she is truly in love with her little brother. I look forward to working with the DSIA towards changes in the way hospitals handle new diagnosis of Down syndrome and so many other things. I cannot wait to share the joy that Dorian brings to not only my life, but to so many others.

Category: Reflections · Tags:

Down syndrome in the News


Guest blogger: Brittany Brouchard

Brittany is a business professional with an area of specialty in Marketing, Public Relations, and Event Planning. She earned her bachelors degree from Sonoma State University and has held positions with an array of organizations such as the California Exposition and State Fair and Sonoma State Entrepreneurial Activities. She currently works for Dignity Health Medical Foundation in Rancho Cordova. Brittany has always had a strong passion for volunteering her time to non-profits and is an Americorps grant recipient and an alumna of the Student Conservation Corps. She is drawn to DSIA because of their mission and deep passion to offer direct services for families in the vast Sacramento area living with Down syndrome.


When I began writing this blog post I looked into various articles that were inspiring and addressed issues that were important to those with Down syndrome and their supporters. The search yielded more than I thought.  I found adults with Down syndrome who take part in voting, mother’s who are faced with a pre-natal diagnosis and choose to proceed with the pregnancy. I found an article on people with Down syndrome on TV and movies and young girls and boys winning prom queen and king all across the country. I was faced with quite the dilemma what article is most inspiring and intriguing, then it came to me. The fact that there are so many articles out there and excellent stories in the media regarding Down syndrome is the most inspiring and intriguing story of them all. The awareness the television and media has brought, the acceptance of teenagers in these high schools across America, the faith in the women embracing the cards they’ve been dealt and the inspirational individuals who stand up for what they believe; these are the real stories.  The cultural shift that has taken place over the last decade is astonishing and the acceptance, tolerance and education is vast. In a world filled with cynicism, negativity and selfishness, I encourage you to seek the positive.

Actors with Down syndrome Raise Awareness

Down syndrome Births Down in the US

Man with Down syndrome Wins right to vote

Gull Lake students vote Down syndrome student Homecoming Queen

Category: News · Tags:

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