Our Birth Story: Double the Blessing, Each One of a Kind

Ever had one of those moments when time stands still, and you know your life is about to change? I was 30-years-old, my stomach cut open when it happen to me. All it took was a whisper: “The boys are fine, Baby B has Down syndrome.” I stared at the ceiling, no response except sudden tears streaming down my face. I never cry. This was suppose to be the happiest day of my life.

In the NICU with Hunter (left) and Troy (right)

I was 20 weeks pregnant with twin boys when my husband, Trenton, and I’s life began to take a tailspin. We had just celebrated Trenton’s graduation from medical school and drove across country from Salt Lake to Omaha to move into a new home, so Trenton could start Family Practice residency. It was sweltering that summer, in the triple digits, and I was huge. I’d gained 48 pounds already, and my bulging tummy was starting to literally list to the left.

I got a referral to see three Maternal Fetal Specialists at the University of Nebraska, the best research hospital in the state with a level 1 NICU. I was prepared, or so I thought. The most pessimistic specialist, the one we liked the least, was the first to spy something off-putting. Dr. Jones noted that Baby B’s (Troy’s) sac had polyhydramnios or extra amniotic fluid. No wonder I was so huge! More troubling, they began to suspect that Baby B had esophageal fissula, and could not swallow. We spoke with a neonatal surgeon, who reassured us that prenatal predictions like this one rarely came true. My mom came into town and I got an MRI.

Read Related Post Here: Enjoying the Quiet Before the Storm as My Son With Down Syndrome Grows Up

The radiologist noted nothing unusual. By week 32, my polyhydramnios had vanished. We took a collective sigh of relief. May be everything would be fine, but one of those 3D ultrasound pictures was bugging us. We laughed with friends that babies look “weird” in those pictures, and they agreed. But then Trenton mentioned Down syndrome to the doctors. Two out of the 3 specialists said the probability was very low, and nothing indicated a diagnosis. I was only 30 years-old after all (not realizing that 80% of women who have a child with Down syndrome are actually under 35). Dr. Jones, Mr. Pessimistic, said it’s a real possibility and would be the worst outcome. Looking back now, I realize so many doctors are not up-to-date on progress in the world of Down syndrome.

The day before the boys were born with Trenton and his parents, Jim and Kathy

One brisk October afternoon we went apple picking, by that night I had contractions. I wasn’t due until November 11th, but I was already 35 1/2 weeks; pretty good for twins. I tried unsuccessfully to sleep through the early contractions. I wanted to deliver naturally, and I tried for 12 hours total. Guess who greeted us at the hospital when we arrived? Mr. Pessimistic, with a chief resident who seemed eager to practice her operating skills. I pushed and pushed, got an epidural, was fully dilated, and pretended to push some more. But honestly I couldn’t feel much after the epidural. They said Baby A (Hunter) was in distress, so to the OR room we went. Soon I was cut open and before I knew it both babies were whisked away before I even got a look.

Read Related Story Here: What I Should Have Asked When My Son was Born With Down Syndrome

Trenton ran to the boys’ side, and I was left with an eery silence. I didn’t know what was normal when it came to childbirth, and especially C-sections. Mine was not in many ways. I didn’t find out until later that day (may be the next day?) that someone cut my bladder during the operation, which explained only a third of the eery silence. The other part was Hunter, who took longer than usual to take his first breath (may be he was trying to quiet the storm about to hit). The last part was Troy of course. Trenton says he knew as soon as he saw him. Textbook case: the eyes, the palmar crease, he just knew he said. He broke the silence with that whisper in my ear, and I could hear his heart break.

I wheeled into the NICU every two hours to learn to nurse my twin boys; catheter and urine bag attached to the wheel chair. Thank God for those momma hormones; they kept me sane that first week. Trenton was a wreck. He couldn’t accept what had happened. He was in a very dark place, even though we learned both boys were healthy. Troy did not have Esophageal Fissula. In fact, he had none of the common health conditions that plague a large percentage of babies with Down syndrome. Still, they made us wait in the NICU for six days for the results of the official test that would diagnose Troy. During that time we never hear a word from the chief resident, whom we suspected had cut my bladder. Dr. Jones had seen us, and he apologized for what happened.

Mr. Pessimistic had been at least partially right all along, and although I still didn’t like him, I respected his apology and professionalism. It was on one of the last days in our week long NICU stay that affirmed what a nightmare this experience had become. Trenton’s parents were making their daily visit to the NICU, I had just finished nursing and was holding one of the boys, when the director of the NICU arrived. He plopped down in MY wheelchair, popped a wheelie (seriously, people) and said: “Yep, Down Syndrome.” We all just stared in awe! Of course, we all knew Troy had Down syndrome. He was relaying the results of that official test, but the tone and manner in which he did it was jarring. Trenton asked him to leave. And then demanded that we all leave the hospital if there was no medical reason for us to be there.

Read Related Story Here: Adult Twins, One With Down Syndrome, Inspire Hope

The day we left that deep, dark cave they call the NICU was an exceedingly gorgeous fall day. Too bad my mood didn’t match the weather. Trenton and I swapped emotions. He jumped into action, and I started down the sad and angry road of grief. Trenton and I took longer than some families to come to terms with Troy’s diagnosis. The first months, even year was full of times of despair. I wondered if Troy would always be excluded, different. Trenton despaired that his boys would never play together. It wasn’t until Troy’s first smile, at 3 months that we took a small sigh of relief. May be we could make this work. By the second year, our despair turned to more and more moments of joy as our boys began playing together. Yes, some of our days were filled with therapy sessions and medical specialists, but their were so many more moments of simple joy.

Of course, having twins can be a blessing and a curse at times. I used to compare my boys a lot in the beginning. This was actually helpful in some ways. I was a first time mom, so I whenever Hunter reached a milestone I began working on that developmental milestone with Troy. And as the boys developed their own identities and personalities it became easier to accept them as individuals. It’s hard to believe that they’re now 4-years-old, and are more alike than different in so many ways.

They go to the same inclusive preschool class, both can write their name, read dozens of sight words, count 1-to-1 correspondence to 20, and play t-ball on the same team. Troy has an affinity for music, reading Dr. Seuss classics, and giving the world’s best hugs (as my husband defines them). Hunter is a fierce protector, and at the same time exceptionally empathetic. Most important, the boys are best friends, and lean on each other for life’s ups and downs. Although Troy continues his thrice weekly therapy sessions in speech, PT, and OT, most days he is not the center of family life. He now has a 18-month-old baby sister, Cora, who’s happy to be the center of attention :-).

Down syndrome has become kind of like the background music of our life. It doesn’t define us, but it’s always there guiding us. It forces us to see what’s truly important in life: respect, happiness, and love.

Looking back now I realize how far we’ve come. I can’t imagine life without Troy. He was worth every second of the seemingly small hardships we’ve been through. He’s made us a unique and unusually strong family unit. He’s taught us what life is all about. And although I’ve yet to have “the happiest day of my life,” I’ve had countless magical moments with my family that have added up to true joy!

This post was originally shared on www.cedarsstory.com. Visit this amazing blog for other inspiring Down syndrome birth stories.

What stands out about the birth of your child? Tell me your story below!

October 4, 2017October 4, 2017

Down Syndrome Policy Expert Chosen as Parent Advisor for New National Center to Include Students with Intellectual Disabilities

Research shows that full inclusion for students with the most significant intellectual disabilities is the best path forward. Federal law requires it. But reality is much different! Talk to any parent of a student with Down syndrome, and they will tell you: “the struggle is real!” In fact, statistics show only 16% of students with intellectual disability spend the majority of their time in a general education classroom with their typical peers.

Now, the University of Minnesota’s National Center on Educational Outcomes (NCEO) plans to put more of these students in general education classes with the support they need. NCEO was recently awarded $10 million dollars from the U.S. Department of Education to create the TIES Center: Increasing Time, Instructional Effectiveness, Engagement, and State Support for Inclusive Practices for Students with Significant Cognitive Disabilities.

Read Related Post Here: $10 Million To be Awarded To Agency that Delivers Inclusive Results for Students with Down Syndrome

“We’re so excited to get this center up and running. The grant begins October 1st, and we’re thrilled to have this opportunity,” says principal investigator for NCEO, Sheryl Lazarus. The center is charged with a monumental task: to support systematic changes in the way most school districts are teaching our loved ones with intellectual disabilities (ID).

“We believe in full inclusion for these students, and now we want to make that happen for them,” explains Lazarus. The goal of the TIES Center is to get students with ID fully engaged in in the same instructional activities and curriculum as their typical peers, while meeting their individual learning needs.

Students with Down syndrome would be a target group for this program. In fact, National Down Syndrome Congress Education Policy Advisor, Ricki Sabia, was chosen to be the parent advisor and liaison for the TIES Center.

“In spite of the strong least restrictive environment language in IDEA, the vast majority of these students are still segregated from their peers. Studies show that students in separate classes have less access to the grade level curriculum and content trained teachers. NDSC is looking forward to the impact that the TIES Center will make to improve the quality of instruction for students with significant cognitive disabilities in inclusive environments,” Ricki Sabia says.

Read Related Post Here: Promoting Inclusion Through Universal Design for Learning

Lazarus says the TIES Center hopes to accomplish the following goals:

Develop professional learning communities in partner state and local education agencies
Develop coaching models for implementation of resources, inclusive practices and communicative competence.
Improve the efficiency and effectiveness of existing resources.
Support parents to become partners in the practice of inclusion for students with significant cognitive disabilities.
Support systems change within the leadership of state and local education agencies for implementation of inclusive practices.

Research on better inclusion won’t be limited to the University of Minnesota. Lazarus says they will have subcontractors at the University of North Carolina Charlotte, University of North Carolina Greensboro, University of Cincinnati, CAST, University of Kentucky and the Arizona Department of Education. There will also be parent liaison’s working with the TIES Center to help parents better advocate for their child.

Read Related Post Here: How Homeschooling is One Path to Inclusion for Students with Down Syndrome

Lazarus says they plan to work backwards to find solutions to the barriers keeping students with ID out of general education classrooms. “We plan to work with schools to find out what’s working and what’s not to create better outcomes for these students. Hopefully that will translate into materials for teachers and parents. We don’t pretend to have all the answers, but we’re going to work hard to find the best path forward,” says Lazarus.

To learn more visit https://nceo.info. I’ll be posting more information on this grant project as new policies or practices are introduced.

What barriers do you see to full inclusion for students with Down syndrome? Comment below and share your experiences and thoughts.

September 18, 2017September 18, 2017

Time to Call, Tweet, and Email Your Senator…AGAIN!

It’s baaaccckkkk! A new bill to repeal the American Care Act, and in turn cut Medicaid.

Remember the endless summer? When we all tirelessly advocated to kill the bill, and it worked. A new, worst bill is gaining traction in the Senate. Look at the graphic below to see what it would do:

It seems Republican Senators are hell-bent on keeping their campaign promise, but in doing so they’re also threatening to restructure and CUT Medicaid.

Why should you care about this bill? Because it will have a negative impact on people with disabilities. People with Down syndrome often use Medicaid throughout their life, even if their parent doesn’t meet the financial threshold for consideration. That’s because most school districts use Medicaid dollars for speech, OT, PT, bus and other services. Medicaid dollars are used in transitional services when our loved ones become adults. That means they can qualify for a job coach, transportation, and housing supports all because of Medicaid.

See Related Post Here: Why Medicaid Cuts Would Devastate the Down Syndrome Community

Here’s how this specific bill will impact the disability community:

Puts per capita caps on Medicaid, leading to devastating cuts in funding
Eliminates the Medicaid expansion and marketplace subsidies and replaces with an inadequate block grant
Allows states to waive protections for people with pre-existing conditions
Allows states to waive the requirement to provide essential health benefits (like mental health and substance use services, rehabilitative and habilitative services, and maternity care)
Penalizes states that have invested in their Medicaid system

You can read the actual bill here.

See Related Post Here: We Meet With Ohio Senator Portman’s Office in Last Ditch Effort to Save Medicaid

We’ve been here before, you know the drill! Your marching orders are as follows:

CALL (202) 224-3121

EMAIL addresses

TWEET handles

Your U.S. Senator and tell them how important Medicaid is to you and your family. Ask them to oppose the Graham-Cassidy bill or any other bill that would cut or cap Medicaid. Use the follow hashtags: #SaveMedicaid #NoCutsNoCaps

We killed the bill once. We can do it again! But it’s going to take a village!

September 14, 2017September 14, 2017

Realizing the Promise of the Endrew Supreme Court Case

It’s been six months since the U.S. Supreme Court ruled schools must be held to a “markedly more demanding” standard when educating students with disabilities. The case of Endrew F. (Drew) vs. Douglas County is the disability community’s Brown vs. Board of Education. It should have a far reaching impact on America’s 6.5 million students with disabilities.

With the school year just starting again, the question is: are parents using this case to advocate for higher expectations for their child with a disability?

The Judge David L. Bazelon Center for Mental Health Law is requesting parents contact them if they have. The center is providing support to parents who want to understand the court precedent, and wants to collect data on how the ruling is being carried out throughout the country.

“The Endrew decision is a major advance. To realize its promise, parents, students, educators, and advocates must work together to ensure school districts comply with the new standard it sets,” says Ira Burnim of the Bazelon Center.

Watch this short clip for background on the Endrew case:

In March, the U.S. Supreme Court sided unanimously with Endrew’s parents and the U.S. government at the time that argued the country should reject the “bigotry of low expectations” set by the last Supreme Court case on this topic, Rowley vs. Board of Education. That 1982 court case required schools to provide “some educational benefit” to students with disabilities, but did not establish a test to determine that benefit. The result was states and school districts with wildly varying degrees of “educational benefit.”

In his opinion, Chief Justice Roberts wrote, “a student offered an educational program providing ‘merely more than de minimis’ progress from year to year can hardly be said to have been offered an education at all.” The court creates a new standard that requires special education students to meet academic standards and advance grade to grade.

There is some concern regarding the court case and students who cannot meet general academic standards.

Endrew requires schools to provide special education that enable even the most significant cognitive disabilities to meet “challenging” and “appropriately ambitious” goals. For these students, progress may be measured against “alternate academic achievement standards” designed to promote further education, work, and independence.

Students with Down syndrome may fall into this category, and I worry that school districts will use this part of the court ruling to exclude these students. Parent advocate, Taina Karru-Olsen, says her daughter’s district staff already tried to use the case against her. “They were trying to use Endrew F. to justify extensive pullouts, more than 20% because of my daughter’s ‘need for intensive instruction,'” Olsen explains. Olsen believes all students could be fully included with the proper supports, and the Supreme Court should have stated this clearly in their ruling.

“I do think that is a danger. We tried to address it in our paper saying that it did not mean that students should be included only if they can meet grade level standards,” explains Burnim from the Bazelon Center. “Endrew was more about high expectations than about inclusion. But research and experience demonstrates that the two are very related.”

So how can parents of children with Down syndrome use Endrew to advocate for their child’s education?

“I think one way to use Endrew is to make the case that inclusion is required to enable the child to meet challenging and ambitious goals” says Burmin. We must remember that special education is not a place, but a service.

Under the Individuals with Disabilities Education Act, students with the most significant cognitive disabilities are required to be instructed and assessed on the same challenging academic CONTENT standards as all other students. The difference is that these students performance on those content standards is measured using different ACHIEVEMENT standards (using an alternate assessment). The Supreme Court did not make this distinction clear, and parents would be advised to make this clear if challenged on this point. Look here for more on this.

Also, pick up one of these nifty “IEP is not a form” t-shirts and wear it to your child’s IEP meeting. The shirt takes a quote from Chief Justice Roberts, who explained that the IEP should be used like a living document.

If you’re interested in learning more about how you can advocate for your child’s education using Endrew or to share how you already have, email Bazelon Center representatives at lewisb@bazelon.org or irab@bazelon.org.

Comment below on how this case may change your child’s education expectations. I’d love to hear your stories of advocacy.

September 13, 2017September 12, 2017

Self-Advocate Uses Fame To Spread Message of Inclusion

You’ve probably seen this incredible World Down Syndrome Day PSA. I’ve yet to watch it without smiling and crying simultaneously.

Gorgeous actress and model, Olivia Wilde, spending time with family, working, dating, living an ordinary life. But the voice is not Olivia Wilde’s. And the life it describes is anything but ordinary.

20-year-old AnnaRose is the voice behind the 2016 World Down Syndrome Day PSA “How Do You See Me?”

She says the video perfectly reflects her life of inclusion: “I want people with Down syndrome to be heard and to be treated with respect like everybody else. I think that speaking up is the right way to advocate for people who have Down Syndrome like me.”

The ad quickly became a sensation in and out of the Down syndrome community, but AnnaRose says a more recent accomplishment is what really makes her proud.

“I just graduated from Rowan College in New Jersey, and I’m so excited and proud of myself. I did a lot of exciting things to achieve my goal of graduating.”

AnnaRose says the best part of college life was being included on campus. “I’m a DJ at the Pemberton Campus at RCBC and I have also worked at the bookstore at the RCBC Mount Laurel Campus,” she explains.

This incredible self-advocate didn’t stumble upon fame and inclusion at college by accident. AnnaRose says she and her family have worked hard from day one to make her a fully included member of her school and community.

“I have always been in inclusive classes, ever since I started school. My classmates have helped me with school projects, sharing notes, following along, and learning acceptable behavior. I also have had to work sometimes to get my teachers on board with MY educational goals. I had to show them that I want to learn. In 2014, I graduated from high school and got my diploma. I was a member of the National Honor Society and an active member of many clubs in my high school,” AnnaRose describes.

She’s also been included in sports teams throughout her childhood, and in 2015 she was invited as a VIP guest of the ticker tape parade after the USA Women’s National Soccer Team won the Women’s FIFA World Cup.

AnnaRose takes her role as self-advocate seriously.

I had the privilege of meeting her this past April, as we both advocated for the rights of individuals with Down syndrome on Capitol Hill. There, she spoke with Congressmen about issues that impact her.

“For all my life, in my experience, inclusion works. Studies prove that inclusion works for everyone. But, there is still a lot of work to be done,” she argues.

AnnaRose says she is not the exception to the rule. “Inclusion is for everyone,” she argues.

For those who want to follow her path of inclusion, AnnaRose has this advice:

“In high school, you have to take serious, inclusive classes. Academics comes first. You have to be prepared to work hard in college, and that starts in middle and high school, even elementary school…

You should also take classes that you are passionate about so that in college, you will know what you want to learn more about. I took TV Technology in high school, and then interned in that classroom in college for my major, Entertainment Technology: Video and Digital Media Production. You should also make friends who support your goals, and who you can support, too. I have friends on both sides: with and without Down syndrome. That is important.”

The recent college grad now plans to look for a summer job in filmmaking, radio, or television. She’ll further her education this fall. ” I’m going to Rider University to continue my degree in Filmmaking, TV and Radio,” AnnaRose explains.

And while her ultimate dream is to work on or behind the silver screen, that dream also includes something most of us take for granted.

“I dream of having a strong group of supportive friends, and of being treated with respect by everyone I meet and work with.”

Congratulations to the amazing AnnaRose! Inclusion Evolution and the entire Down Syndrome community applauds you! You’re an inspiration and we can’t wait to follow your journey of inclusion!