Courtney Hansen

@courtney-julene | contributor
Courtney is a proud military wife and domestic engineer to three vivacious kids (one who’s chromosomally-enhanced). She advocates at the local, state, and national level for disability rights. Learn how you can advocate at www.inclusionevolution.com

Learning to Be an Advocate for My Son With Down Syndrome

I’m becoming “that mom.” You know the one: The one who honestly thinks her child with Down syndrome would be an asset, rather than a liability to your typical kid’s classroom. Who thinks her son doesn’t have to “keep up” to be included. The one who cares when you say “r*tarded,” even when you argue that you “didn’t mean your son.” Who writes all those annoying political posts about how Medicaid cuts would impact individuals with Down syndrome and take disability rights back a generation. The one who thinks inclusion for her son is the civil rights debate of our time. Who shouts that separate is never equal to anyone who will listen. How dare she! The audacity of it all! The evolution to becoming “that mom” isn’t an easy one for me. I’ve had to adapt to my new environment. I used to be so easily swayed. First I was a journalist who always tried hard to be unbiased. Then I was a teacher who ran my classroom like a well-oiled machine, not thinking much about the absence of any kids with disabilities in my school. But what I now realize is if I don’t stand for my son, who will? Courtney’s son in school. Our culture has yet to embrace full inclusion of children like mine. Sure there’s been good progress, but you know how I can tell we’re not there yet? I can tell when I take my twin sons (one typical, the other with Down syndrome) to school, and one can enter a regular kindergarten class no questions asked; while the other must fight to earn a spot in the same class. Federal law protects my son from this culture of exclusion. IDEA says he deserves an individualized, free, and appropriate education in the least restrictive environment. Still, these laws are not enforced the same across our nation. Federal courts have ruled “Inclusion is a right, not a special privilege for a select few” in Oberti v. Board of Education. Still my friends tell me how their kid is doing laundry and vacuuming in primary school, instead of learning to read next to their typical peers. Courtney and her son outside their senator’s office. So instead of just hoping my son learns next to his brother, I’m applying to the Special Education Advocate Training through the Council of Parent Attorneys and Advocates. I will be an expert in the laws that protect my son in school. Not only do I post on Facebook about legislation that impacts my son, I attend the Buddy Walk on Washington to actually meet with my legislator and tell them my son’s story. Instead of waiting until my son turns 21 years old to think about what job he might get, I’ve started a local communications workshop for adult self-advocates to learn about their successes and challenges in employment. Obviously you don’t have to go this far to be “that mom.” I’ve seen moms feared, misunderstood, and even pitied for a lot less. I surprise even myself with my moxie. But I’ve also gained a new clarity of my life’s ambition. Because if I don’t stand as an advocate for my son now, how will he ever know how to advocate for himself in the future? If I don’t stand for something, I’ll fall for anything. This story was originally posted on Courtney’s blog, www.inclusionevolution.com. Visit to learn how you can advocate at the local, state, and national level for individuals with Down syndrome. We want to hear your story. Become a Mighty contributor here.

College Options for People With Down Syndrome

I can see the headline now: “Twin Brothers Graduate Side-by-Side, Accepted at the Same College.” I can see my precious boys, now men, stepping onto the platform hand-in-hand, receiving their diplomas together. The year is 2031, and it’s the culmination of years of hard work, as well as the beginning of years of hard work to come. But why is this even news, you ask. After all, twins graduate side-by-side every spring. What if I told you my twin boys are so unique that the odds of recreating another birth like them is 14 in a million! I know, I know… I should play the lottery. But this alone isn’t even newsworthy. The real headliner here is that one boy is neurotypical, while the other has Down syndrome. And the truth is, few people expect much out of the latter. Except me! My twin boys will begin kindergarten in a year, and I’m already plotting how to send them to college. Of course, like most parents, my husband and I have done the dutiful task of setting up a 529 College Savings plan for my our typical son and daughter. But doing the same for Troy, who has Down syndrome, would put his future SSI Medicaid benefits at risk. Luckily for Troy, the Achieve a Better Life Experience (ABLE) Act was just passed in 2014, and now he can save for college too without losing much-needed government assistance. Read more about that here. So now to investigate college programs. I know, we’re 14 years out…What can I say? I’m a bit of an obsessive planner. I can’t help it. But my investigation into colleges for my son amazed me! Did you know there are over 260 college options for Troy, and other people with intellectual disabilities? And he can receive Pell grants, work study money, and scholarships to help pay the tuition. The evolution to better higher education opportunities for people with intellectual disabilities really took off with the reauthorization of the Higher Education Opportunity Act of 2008. But keep your eyes and ears peeled (and your legislator on speed dial), because the act is supposed to be reauthorized again this year. We can’t go backwards. On closer look, I noticed that these college programs are not all created equal. They range from Syracruse’s InclusiveU Program, which boasts a four-year certification program where students take the same exact classes as their neurotypical peers and live with those peers, to community college programs where students are completely segregated and only learn life skills. Unfortunately, the vast majority of these college programs fall into the latter category. Now, I’m not complaining. At least higher education, any higher education, exists for my son. But I’m not going to fight for 13 years for my son to be included with his typical twin brother in primary and secondary education just to turn around and fight again in higher education. We need to be advocating for more programs like InclusiveU, and we need the Higher Education Opportunity Act passed with more, not less funds for inclusive higher education. My hope is by the time Troy and Hunter graduate high school in 2031, most higher education programs will be fully inclusive and lead to competitive paying jobs. Visit –> to find out which college programs are in your state, and start advocating for full inclusion. You can join our journey of inclusion and advocacy at inclusionevolution.com. We want to hear your story. Become a Mighty contributor here .

Everything is Still Possible for My Son With Down Syndrome

In three short weeks, my first born sons will start kindergarten. As I prepare to send them out into the world, I am convinced that everything is still possible. Isn’t that what kindergarten is about, after all? By their very nature, kindergarteners are self-confident, adaptable, curious, eager to learn, and for them everything is still possible. Look at those boys! Both are the very essence of what a kindergartner should be. What a refreshing way to live! When I became pregnant with my twin boys I had the same optimistic outlook, but 35.5 weeks later as I held them it seemed none of my dreams were still possible for my son who was diagnosed with Down syndrome. As my son’s birth story unfolded, I allowed the world’s perception of an intellectual disability envelope me. All the can nots and will nots strangled me in that moment. I could not see past Troy’s disability. I had forgotten all I had learned from dear Sister Immaculata in kindergarten: that everything is still possible. It’s taken five years of preparation to believe everything truly is still possible. That’s three preschool teachers, three pediatricians, five specialists, 23 therapists, 208 hours of therapy to learn to walk, 520 hours to learn to write letters and cut with scissors, 520 hours to learn to jump and ride a trike, 650 hours to learn to speak in short phrases, 850 hours of advocacy training, 2,737.5 hours to potty train (this is probably an underestimate), and countless sleepless nights. You might wonder how I could believe this, against these odds. But it’s these very odds that make me believe everything is still possible. Troy is amazing in his tenacity, adaptability, and hard work, and he comes by it honestly. Although Troy has been at the center of this hard work, our whole family has been there every step of the way. Our family has always loved a good challenge. We will beat the odds, or learn and grow trying. So, bring it on kindergarten! We’ve done our homework; we’re ready for you. I knew the time would come fast. I made a bet then that my twin sons would graduate together in the year 2031, and both would have the opportunity to go to college. I’ve learned since that this is not only possible, but is happening right now. There’s over 260 college programs for students with intellectual disabilities. Self-advocates with Down syndrome are multi-million dollar business owners, international speakers, models, reality TV stars, athletes, husbands, wives, and loved family members. I am confident now that my very unique twins can strive for the same things in life: success, independence, security, happiness, and most of all love. Everything is still possible! School’s back! Learn how to make this catchy bio for your child’s teachers here.

Advocating for Your Child During the IEP Meeting

“There is no more powerful advocate for children than a parent armed with information and options.”–Rod Paige Tis the season for chocolate and wine and tears: it’s Individualized Education Plan (IEP) season. That means chocolate and wine is needed to hold back the tears. In the past week, I’ve read at least three social media posts that started something like this: “My goal for today is to not cry at my child’s IEP meeting…” To you, mama, I say: let the tears flow. Eat the chocolate; pour an extra glass of wine. We are our child’s best advocate, which is why we cry. Because we actually get it! We understand our child’s true worth and what’s at stake. And the numbers are abysmal. In the year 2017, all but one state reported more than 60 percent of students with intellectual disabilities (ID) spent 50 percent or less of their day in general education classrooms. Check out the report here (the numbers for inclusion in general education start at page 49). The end result is 80 percent unemployment for people with ID. Yes, you need to arm yourself with information at the IEP table and advocate in a professional manner, but you also need to inject emotion and heart into a meeting that too many schools turn into a check-the-box, fast food version of education. They need to understand that your child is not just another box to be checked; that your child deserves to “Have It Your Way!” So, what can you do to advocate for your child at their next IEP meeting, while keeping heart? 1. Bring an advocate. Don’t go alone to an IEP meeting. Bringing someone, anyone with you, gives you the freedom to cry and share why your child deserves more. The advocate provides an objective view of the meeting, and an important counter to school personnel. This person can take notes for you, ask questions that you planned to ask before you started crying, and rehash what happened over a glass of wine post-meeting. Find a COPAA trained advocate here. Your advocate could be a neighbor or good friend, too. 2. Demand more than the fast-food version of the IEP process. My favorite quote of 2017 comes from Chief Justice John Roberts in the Endrew F.  decision: “The IEP is not a form.” Simply put, the IEP is actually a living document. You have the right to change it and ask for more than what your state form requires. Ask a lot of “but why?” questions. Demand answers in writing. Keep reminding your child’s IEP team of the “I” in IEP. 3. Write it down. Especially if you think you’ll be emotional at an IEP meeting, it’s imperative to have the meeting recorded via video or note form. An advocate can write notes for you. Remember, if your concerns are not put on the record, they don’t exist. A verbal concern is lost forever in the IEP abyss. Make sure everything is on record and in your child’s IEP. You can add attachments to your child’s IEP at any time. Often an IEP overwhelmingly becomes the perspective of the school personnel. Interject your concerns in an official way, and leave the tears at the IEP table. Those recorded concerns will make a lasting impact and creates a paper trail. What are your concerns going into your child’s next IEP meeting? How do you prepare? Follow our journey of advocacy and inclusion at www.inclusionevolution.com. We want to hear your story. Become a Mighty contributor here . Getty image by

Ending Organ Transplant Discrimination Against Kids With Disabilities

Did you know that people with Down syndrome and other disabilities face significant barriers to life-saving organ transplants? I was shocked when I first heard this was a “thing.” How could anyone decide one life is less worthy than another solely based on their disability? That’s why eight months ago I called my state representative, Niraj Antani, and asked him to draft a bill giving greater legal protections for life-saving organ transplants to people with disabilities. Ohio House Bill 332 was born, and the Ohio House approved the bill unanimously. It now goes to the Ohio Senate for a vote. You can read the bill here. After Rep. Antani (R) gave his speech on the House floor, Democrat Nickie J. Antonio rose and said how shocked she was that this type of discrimination was happening in Ohio. “This is a human rights issue, and you know that it’s a great bill when both Republicans and Democrats agree this needs to end,” Rep. Antonio declared on the Ohio House floor. . As the bill was being drafted last summer, I learned about a story of organ transplant discrimination just north of where I live in Ohio. Little Ellie’s mom, Jackie, was told shortly after Ellie was born that she couldn’t receive the heart transplant she desperately needed to stay alive because she has Down syndrome. As soon as I connected with Ellie’s mom, Jackie Ward, I knew she had to share Ellie’s story with Ohio legislators and the world. Ellie would be the change-maker! Jackie was hesitant to share at first, but over time she realized the impact Ellie’s story could have on the passage of H.B. 332. Ellie’s story had a huge impact on the Ohio House members I spoke to, who were all equally as shocked as I was that this was indeed a “thing.” The Americans with Disabilities Act provides broad protections for individuals with disabilities, but there’s no specific protection for access to organ transplantation. In fact, a group of 30 Republican and Democratic U.S. Representatives signed a letter just last year to the Department of Health and Human Services asking them to issue federal guidance to protect individuals with disabilities against organ transplantation discrimination. Unfortunately, nothing came of that letter. That’s why states need to act. If you’re interested in advocating for a similar bill in your state, you can look at these toolkits: ASAN Organ Transplantation Toolkit and NDSS Organ Transplantation Toolkit. I would also encourage you to watch testimony from Ellie’s mom, as well as an Oregon mom who’s nonverbal autistic son was refused a heart transplant in Oregon and ended up leaving the state and getting the transplant done in California. Both are extremely moving and puts a human face on an otherwise dry bill. Ohioans aren’t alone in their fight against organ transplant discrimination. Kansas just approved their bill and it’s going to the governor’s desk to sign. Six states (Pennsylvania, Oregon, Maryland, California, New Jersey, and Massachusetts) have already passed similar bipartisan legislation to prevent organ transplant waitlist discrimination. One more (Delaware) currently has a bill working its way through the state legislature. My son at the Ohio Statehouse Ohio House Bill 332 now moves to the Senate for a vote. What are your thoughts on this issue? Do you believe everyone, regardless of disability, deserves access to life-saving organs? Are you interested in advocating to end organ transplant discrimination in your own state? Follow our journey of advocacy and inclusion at www.inclusionevolution.com. We want to hear your story. Become a Mighty contributor here .

I Have a Dream, Too, for People With Intellectual Disabilities

“I have a dream. It’s a dream deeply rooted in the American dream…” –Martin Luther King I have a dream one day our sons and daughters with Down syndrome will be valued as equal members of their community. I have a dream teachers and principals will set high expectations for our children, realizing the value of inclusion with their typical peers. I have a dream those typical peers will one day become employers and community leaders who provide adults with intellectual and developmental disabilities (I/DD) the opportunities they deserve to fulfill their true potential. That those typical peers will become caregivers, researchers, therapists and medical professionals who look at people with Down syndrome, not as a problem to be fixed or eliminated, but as a beautiful expression of humanity to be shared with the world. Rev. Dr. Martin Luther King Jr. speaking. (Photo by Julian Wasser//Time Life Pictures/Getty Images) On Monday January 15, 2018, we celebrated Martin Luther King’s birthday and were reminded of how the disability community faces similar struggles. Without downplaying the abhorrent past of slavery, there’s still a lot of connections to be made. Both movements are struggles for basic human rights: freedom, equality and justice. The Civil Rights Act of 1964 woke up parents of children with disabilities. The public and their representatives in Congress began to understand how segregation and unequal educational opportunities were the anti-thesis to the American dream. Before the 1970s, many children with disabilities were not given the opportunity to attend school at all. As Congress was formulating the Individuals with Disabilities Education Act (IDEA) of 1975, there were 36 pending court cases over the rights of students with disabilities. More than 30 years after the civil rights movements began, great progress has been made. The most abusive and neglectful institutions have closed their doors. Courts have expanded their interpretation of the 14th Amendment’s “equal protection clause” to include people of color and those with disabilities. Segregation has legally ended for both groups (including the Americans with Disabilities Act (ADA), Rehabilitation Act–including section 504, and IDEA for people with disabilities). But we know, even though both groups have made great gains legally, they still face prejudice and exclusion. Only 17 percent of students with I/DD are included in a regular education classroom with supports for most of their school day. The Supreme Court recently ruled in Endrew F. that schools must provide a “more meaningful benefit” to students with disabilities, but some school districts and national organizations are interpreting this to mean students with the most significant disabilities must be segregated to earn this benefit. (Read more about this here). The current political climate also provides barriers for continued forward progress. The Department of Justice just scrapped ADA guidance that promotes integrated work for people with disabilities. With unemployment for people with I/DD at 75 percent, this is a step backwards. We need more guidance, not less. (Read more about the rescinded ADA guidance here). In many ways, it seems the civil rights movement for people with disabilities has stalled. But as one of my mentors says “advocacy is a marathon, not a sprint.” Progress will continue! It will take tireless action from mothers, fathers and self-advocates. When our government and institutions waver in indecision about full inclusion for our loved ones, we must forge forward. So what can you do to advocate for someone with Down syndrome? 1. Advocate: learn about your student with Down syndrome’s rights by signing up for a webinar here, read online resources or order an advocacy book here, joining the Council of Parent Attorney’s and Advocates here, or the National Down Syndrome Advocacy Coalition (NDAC) here. 2. Think College: make it your child’s long-term IEP goal to go to college. There’s more than 260 college options for students with I/DD. Check it out here. 3. Donate: give to your local Down syndrome affiliate, or to a specific cause. Global Down Syndrome Foundation is raising money this year to create updated, evidence-based medical guidelines for adults with Down syndrome. Click here to find out more. 4. Legislate: support legislation to transition from sheltered workshops to integrated, competitive employment. Watch this video to learn more about the push to end of sub-minimum wages. How do you feel about the state of disability rights? What do we need to do right now to continue moving forward? Follow our journey of advocacy and inclusion at www.inclusionevolution.com. We want to hear your story. Become a Mighty contributor here .

How You Can Advocate for Individuals With Down Syndrome

Supporters of the Down syndrome community are by definition a fierce group. Parents and allies often will do anything to create a better path for their loved one with Down syndrome. The need for grassroots advocacy training and guidance is even more important with current political threats to supports and systems (like healthcare, education and employment) that people with Down syndrome rely on. Now, the National Down Syndrome Congress is giving you one more way to advocate. NDSC Convention in Washington, D.C. Today NDSC rolled out the National Down Syndrome Advocacy Coalition or NDAC. The coalition will be a nation-wide, grassroots group of self-advocates and allies, working together to support policies that benefit the Down syndrome community. The program hopes to train volunteers to effectively engage with lawmakers and other change-makers to promote positive advances for our loved ones with Down syndrome. “NDAC will provide a formal mechanism to engage individuals — regardless of level of advocacy experience — in these efforts in order to maximize the power of our community’s voice,” explains NDSC executive director, David Tolleson. There will be 3 levels of membership, and advocates at any level of experience (or no experience) can get involved: 1. NDAC Members. Volunteer advocates of all abilities and levels of experience. There is no selection process to be a NDAC member, but you will need to be a NDSC member first (if you attend the NDSC convention you’ve already paid the $50 annual membership fee). Find out what other benefits you receive with an NDSC membership and sign up here. 2. NDAC State Leaders. Volunteer advocates with more experience, who will serve as the main grassroots organizers for their state. NDSC hopes to have two to three advance advocate organizers per state. NDSC will be rolling out this level of membership in the new year, and state leaders also must be NDSC members. 3. NDAC Group Members. These are local, state or national groups that can be Down syndrome specific, but also cross-disability groups that want to help with outreach and sharing information. The fee for group membership is $20, and entitles one group representative to be the point of contact for NDAC. The group fee is waived if the group is already an NDSC affiliate. Chris Newlon and her 14-year-old daughter, Rebecca Long-time advocate, Chris Newlon, who’s 14-year-old daughter, Rebecca, has Down syndrome says the more training opportunities to advocate the better, “Advocating isn’t specific to one organization or group. Nor is it only for politicians or educators. The more we advocate the better, from helping little kids on the playground figure out how to approach a nonverbal child to speaking with our congressmen. Our goals, our focus, is to make the lives of those with disabilities not seem so ‘alien’ but just part of life itself.” NDSC Policy and Advocacy Director, Heather Sachs, will be heading up NDAC and says she’s excited to encourage advocates of all levels to find their voice: “NDSC has been involved in advocacy for decades, but we have really established ourselves as the leading voice on issues such as education, Medicaid, health care, transition and employment policy over the past year. We did a massive amount of outreach and grassroots organizing during the health care and Medicaid battles over the summer, and those efforts laid the groundwork for NDAC. There is a clear need and desire for more grassroots advocacy training and opportunities in our community.” Want to apply to be a NDAC member? Click here. Are you a NDSC affiliate or cross-disability group and want to join arms with NDSC? Email lauren@ndsccenter.org NDAC State leaders can start applying in January of 2018. “We encourage everyone to become a member of NDAC and ask your family and friends to join as well. Given the constant threats to Medicaid, health care, education and employment, the NDSC policy team needs help from a large grassroots army to advocate for equal rights and opportunities for people with Down syndrome. Join us!” Sachs says. Follow our journey of advocacy and inclusion at www.inclusionevolution.com. We want to hear your story. Become a Mighty contributor here .

What I Should Have Asked When My Son Was Born With Down Syndrome

We had a lot of questions when our son was born with Down syndrome. Troy on the right, with his typical twin and Trenton, my husband Why was this happening to us? What health problems will Troy have? Would he be high functioning? Will Troy ever play with his typical twin brother? Would we ever be happy again? All of these questions focused on how Down syndrome would negatively impact our lives. Most of them revealed my husband Trenton’s and my utter ignorance when it came to Troy’s diagnosis. Some of our doctors and a quick Google search didn’t help matters. They seem to perpetuate only the pathology of Down syndrome — completely missing the beautiful life and possibilities I held in my arms. Of course, hindsight is 20/20 and the reality is, just like parenting any child, you never know how your life will change until you walk down that path. So, if I could go back to that sad, scared mama almost five years ago I’d whisper one question into her ear: How could Troy transform our family for the better? It’s not a question that doctors or Google could ever answer. It’s not a question that even came to mind in the midst of the overwhelming grief of what should have been. It wasn’t until I could let go of the should’ve/could’ve beens, that I realized how beautifully made my son is and how Down syndrome can open unexpected doors for myself and my family. Acceptance of Down syndrome became our silver lining. Ironically, we didn’t accept Down syndrome that easily. We wrestled with the idea of it constantly those first few months of Troy’s life. It wasn’t until we accepted our son, that we accepted Down syndrome. You may have heard the sayings “my son is not Down syndrome” or “when you’ve met one person with Down syndrome, you’ve met one person with Down syndrome.” In my opinion these sayings are at once completely true and false. It wasn’t until Troy’s personality revealed itself (that first smile, the way he looked around for his brother whenever he wasn’t near, later when he woke up early every morning just like his daddy, or loved to bust a move like his mama), that we realized we would be happy again. Troy is unique and ours. Down syndrome doesn’t define him, but Down syndrome has found a place in our heart and has emboldened us to live better. Our family has become champions of Troy and all people who are different or vulnerable to misunderstanding. My husband had just graduated from Medical school when Troy was born. All he saw when he looked at Troy then was health problems related to Down syndrome. Now, he sees someone who loves life in spite of all that. This has changed the way he doctors and sees his patients. It’s made him more compassionate and caring. Hunter and Troy, almost 5 years old I’ve fully embraced my role as lead advocate in our household. I created a blog because of Troy, and will now train as a special education advocate to help other families. Although each of our loved ones with Down syndrome are unique and different, there are issues that bind our community together. We must stand together to ensure our loved ones get the support they need to be included in every aspect of society, whether that be school, employment or our health care system. Five years ago, I couldn’t imagine myself presenting in front of my state legislature about a bill that I advocated for, but this fall I will do just that. Even Troy’s twin brother already has a sense of advocacy. Hunter gives me daily reports about what Troy did in school, and is quick to tell us what Troy is saying when we can’t decipher his sometimes jumbled words. They say siblings of individuals with Down syndrome often lead lives of service and honor, and I can imagine that for Hunter based on his actions now. Troy leads by example. He’s always polite and congenial. When Troy walks into a room, everyone takes notice. He’s loud and boisterous. He wants to be heard, and he will. As will we! I don’t think much about how life could have been with two typical boys, but when I do, I realize we may not have been as close, strong and empathetic as we are now. How has Troy transformed our family? In countless, magical ways…that’s how! Follow our journey of advocacy and inclusion at www.inclusionevolution.com. We want to hear your story. Become a Mighty contributor here .

Military Service Creates Secure Future for Our Son With Down Syndrome

Our family has a love-hate relationship with the United States Military. It’s taken us away from family and friends and each other. It’s lead to the death of good friends and painful memories of war and deployments. It’s also taught us what’s important in life: honor, duty and living every moment like it’s your last. As one would expect, our relationship with the military leans more on the “love” side as my husband gets closer and closer to retirement. If I’m honest, the military has afforded our entire family a brighter future. For my husband and I, who grew up working poor, it’s meant reaching the American dream debt free. More importantly, for our son with Down syndrome, it means an exceptional life and secure future, even after we pass away. Signing up for military service means making sacrifices 99 percent of Americans might not even consider, but the rewards are also worth mentioning. For the sake of this blog, I’ll limit those sacrifices and rewards to those pertaining to our son, Troy, who has Down syndrome. The goal of this post is not to recruit you for military service (like I could, even if I tried), but to give you a glimpse of life in the military with a child with a disability. Taking Care of the Future Today I’ll start at the end first, because I’m so excited and want to share what 20 years service with the United States military will get Troy. One of the first things someone (I don’t even remember who) told us when Troy was born, is that he would have free Tricare healthcare for life. Many individuals with Down syndrome are eligible for Medicaid when they become adults, but having a secondary insurance means Troy’s healthcare will be secure. Read more here. The other huge perk is my husband’s retirement pension. On the day he retires, we can request that Troy receive the pension at my husband’s death, rather than myself. This seems like a no-brainer to me. Troy is likely to outlive both, Trenton and I. Likely, I’ll always be able to work and support myself, but Troy may need extra financial help throughout his adult life. Just beware and be prepared! You will need to open a “First Person Medicaid Payback Trust,” to ensure your child’s SSI and Medicaid benefits are not put at risk. As the title of the trust states, the funds in the trust upon your child’s death will be paid back to Medicaid. Learn more here. Free Socialized Health Care We always joke the military is the only place in America where you can experience socialism, even though we’re fighting for capitalism. I’ve had friends complain about their healthcare through the military, but really? It’s free. Everything is free. My husband doesn’t have a deduction out of his paycheck for healthcare. When you have a child with Down syndrome and multiple health problems, that is huge. We don’t pay a dime for medicine, specialists, surgeries, private therapies or orthotics. I have too many civilian friends to count who don’t have their child with Down syndrome in private therapy or orthotics because it’s so expensive and their insurance doesn’t cover it. I can’t imagine our insurance not covering our child who has Childhood apraxia of speech and poor gait/low tone. I never have to beg for a referral or service. In fact, I usually tell my son’s military pediatrician which private specialists and therapists I want him to see and they sign the referral no questions asked. Troy even has his own case manager who I absolutely love. If we ever have a problem with a referral or a question about anything, I just call her and she takes care of it. Troy with his Daddy The Exceptional Family Member Program Every branch of government has this fabulous program called “The Exceptional Family Member Program” (EFMP). The program was created in the 1980s to help military families identify the medical and educational resources they need at their current duty station. The “exceptional family member” can be anyone in the family who needs extra assistance. I had a friend who battled breast cancer in her 20s and her military husband was able to get home healthcare resources through EFMP. I also had a friend who’s child had a speech delay, and was able to get therapy services through EFMP. It’s worth noting that everything I mention here is absolutely free. When you’re moving around a lot (we’ve moved four times in 10 years of marriage), you have added stress with a child with a disability. I’m constantly worried that our next duty station may not have a good children’s hospital or private therapy services or an inclusive school for Troy. Although the military mission is always paramount in any move, EFMP takes a family’s documented needs into consideration. We’ve made a point of staying away from states that are known to do a poor job educating and employing individuals with intellectual disabilities. Read about EFMP here. Respite Support I’m often asked how I survive with three kids, a husband in medical residency and no family support. Our closest family members live 500 miles away, which is the closest we’ve lived to family since my husband enlisted at 18 years old. The answer I give them is “wine and my respite provider.” Everyone who qualifies for EFMP is guaranteed a highly-qualified respite provider and 12 hours a month of free babysitting. This is my saving grace! It doesn’t sound like much, but when it’s free, you take it. Our providers must have some professional connection to children with disabilities. We’ve had nurses, clinical psychologists and teachers. The respite providers are constantly in training; learning the newest child care research and medical techniques. They’re also highly compensated at a price I would never be able to afford. This ensures high quality care I can depend on. I’m always free on a Saturday night! I still worry often about our military future and Troy. I worry about getting out or staying in, and the impact on all three of our kids. But the military has forced me to live in the moment and accept that change is inevitable. For Troy, who hates change and transitions, military life may help him face his fears and become a more flexible adult. It has for me! Follow our journey of advocacy and inclusion at www.inclusionevolution.com. We want to hear your story. Become a Mighty contributor here .

Meeting a Twin With Down Syndrome Gave Me Great Hope for Our Future

Our story of advocacy starts with two babies who shared a womb, born just seconds apart, whose bond is unbreakable. Whose expectations at home are the same: respect, hard work and love. Twins really catche people’s attention. So having twins, one typical and one with Down syndrome, can often feel like a circus. Troy (back) with his typical twin, Hunter (front) at 8 months old. A normal trip to the grocery story with my twin babies garnered constant attention. If I had a dollar for every time someone tells me “You have your hands full,” I would actually make a decent wage at this stay-at-home-mom gig. If I had a dollar for every time someone stares extra long at both boys, trying to figure out how they’re actually twins, I could retire! The likelihood of having twins, one typical and one with Down syndrome, is 14 in a thousand. If families blessed enough to have a child with Down syndrome take the moniker the “Lucky Few,” then we’re the “Lucky Ones.” I really should start playing the lotto. That’s why meeting other families with twins, one with Down syndrome, is so special. You feel like you’ve met a secret tribe that fully understands the blessing, and sometimes curse, of having children the same exact age with such different developmental paths. If comparison is the thief of joy, imagine watching your son with Down syndrome struggle to do things that come naturally to his twin. Still, it also comes with many surprising perks. We never take life for granted, and both our boys are true fighters with an empathic spirit. You can imagine my excitement then to meet a set of successful adult twins, a typical sister and a brother with Down syndrome. I got a chance to see 39-year-old Katie and Kris Faith at the National Down Syndrome Convention this summer in Sacramento. Theirs is also a story of advocacy that has led to a life of self-determination and success for both twins. Katie Faith Lingo and Kris Faith “When we were born in 1978, our doctor was not encouraging. He suggested to our parents that they did not have to take Kris home. But leaving Kris at the hospital was never an option for our family,” Katie Faith Lingo says. Undoubtedly, the Faith family’s decision to keep Kris was the exception rather than the rule at that time. However, Katie says her parents were adamant that what others saw as a burden, would end up being a blessing. An Inclusive Family Today, Kris works at California’s Department of Developmental Services as an office aide after attending the local city college. His sister, Katie, has a Master’s in Special Education and is an Inclusion Specialist at their local school district. It’s obvious that Kris’ disability led them to a path of service, but how did they get there? The twins say it was their parents’ openness and determination to include Kris in every aspect of life. “Kris was accepted and loved. He was also expected to be a contributing member of our family with the same chores and responsibilities as all his other siblings,” Katie describes. And it wasn’t always Katie who protected Kris. “I remember finding Kris pinning a guy to a locker in high school. After defusing the situation, I asked Kris: ‘what’s going on? Was he bullying you?’ Kris said ‘no, he was making fun of you!” Katie remembers. At a time when inclusion didn’t exist, Kris’ parents pushed for him to be mainstreamed in his neighborhood school, sharing classes with his typical peers. “In middle school I earned the highest award, the Principal’s Award for Courage and Determination. I was also the ball boy for basketball. It was fun!” Kris describes. He went on to graduate from high school, and enroll in both general and special education college courses. It’s obvious the doctors were wrong about Kris Faith. “Kris ended up influencing the path of my life, and has given our family the unique ability to see individuals with disabilities as more alike than different,” Katie explains. “I’m so glad I was born into a loving family. I’ve been given many gifts. One day I dream of being a famous author or song writer, but I feel like I’m already living the dream!” Kris exclaims. The Faith twins’ story is such an inspiration to families like ours. They remind us that this unique road is worth it, and advocacy matters. Thank you Kris and Katie for sharing your story! Follow Troy’s journey of inclusion at www.inclusionevolution.com. We want to hear your story. Become a Mighty contributor here .