Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

How Military Service Creates a Secure Future for Our Son with Down Syndrome

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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 a exceptional life and secure future, even after we pass away.

Read Related Post Here: Open Letter to My Twin Sons, One with Down Syndrome, On Their 5th Birthday

Signing up for military service means making sacrifices 99% of Americans wouldn’t 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 (LOL- 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 just so excited and want to share what 20 years service with the United States military will get Troy. One of the first thing someone (I don’t even remember who) told us when Troy was born is that he would have free Tricare health care for life. Many individuals with Down syndrome are eligible for Medicaid when they become adults, but having a secondary insurance means Troy’s health care 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 out-live 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.

Read Related Post Here: Brother Urges Parents to Prepare Typical Siblings for the Future

Free Socialized Health Care

We always joke that 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 health care through the military, but really?–it’s FREE. Everything is free. My husband doesn’t have a deduction out of his paycheck for health care. 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 twenties and her military husband was able to get home health-care 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 4 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 employment 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 40 hours a month (in the Air Force) of free babysitting. This is my saving grace!

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. Their also highly compensated at a price I would never be able to afford. This ensure high quality care that I can depend on. I’m always free on a Saturday night!

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

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!

Are you or do you know a military family with a child with special needs? How has your experience been? I’d love to hear about your military story. Comment below! 

 

Open Letter to My Twin Boys, One With Down Syndrome, on Their 5th Birthday

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Dear Hunter and Troy,

Five years ago today you entered our life in dramatic fashion and changed us forever. Your first five years have been full of adventure and love, and we can’t wait to see what joys await in your future.

Below are memories from a time in your life that you will likely never remember. Treasure these memories and each other! 

Hunter (left) and Troy (right)

You won’t remember when your Daddy and I found out you were TWINS…and BOYS! We were so excited! We cried tears of joy, and started planning the adventures we would have with our little “man cubs.”

You won’t remember your traumatic birth. The worry in our faces as Baby A, Hunter, had difficulty breathing at first and Baby B, Troy…well, we knew as soon as we saw your beautiful face, and we cried tears of fear.

You won’t remember how your Daddy and I watched you sleep snuggled together in your bassinet. We called you the “baby symphony,” because your sweet infant breath sang a duet to us nightly.

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

You won’t remember how proud your Great-Grandfather was of you both. He would tell me of his own special bond with his brother who was injured at birth and had an intellectual disability; how it made him a better man. Papa passed away when you were six months old.

Troy with Papa and Hunter with Nanny

You won’t remember how you first discovered each other out of the womb; looking into each others eyes with a reassurance that life together would be enough.

Thing 1 (Hunter, left) and Thing 2 (Troy, right)

You won’t remember your unique personalities blossoming. Hunter we jokingly called “cling-on,” because he loved all things Mommy. Troy was our #boyfilledwithjoy, never complaining; taking life as it came–hardships and all.

You won’t remember reaching those all important first milestones, and how I studied every difference. Hunter mastered these milestones effortlessly, while Troy battled twice as hard for twice as long to keep up.

Read Related Post Here: Our Birth Story: Double the Blessing, Each One of a Kind

You won’t remember your obsession with simple joys like a bubble bath, sweet children’s books, and a train chugging past our home.

You won’t remember how you both treated Troy’s thrice weekly therapy sessions like just another day at the playground. Never complaining, often laughing and snuggling therapists. Teaching me that although disability can often bring hardship, it can also bring great reward and should be treated like a natural part of life.

You won’t remember your secret twin language. How Hunter would lead Troy in a conversation and then translate what was said to me in great detail.

You won’t remember the endless tickle-fests and wrestling matches with Daddy. Then again, you just may remember because they’ve never stopped.

You won’t remember your first day of preschool. How I followed your school bus to school with such trepidation, but so excited for you to start this journey together.

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

You won’t remember the day your baby sister was born. Hunter, the proud oldest brother, never letting her go; while Troy tried ignoring the new addition hoping she might go away. LOL

The day Cora was born

You won’t remember how your mother transformed from a stay-silent, conformist to a fierce protector and advocate of inclusion for children with disabilities. And your father’s transformation to a more empathetic doctor.

Troy and I meeting with Senator Portman’s staff

You won’t remember Hunter becoming a natural leader that often parented better than I did. Or how Troy impressed every adult with his always appropriate “please” and “thank you” and “your welcome.”

You won’t remember how much fun we had just being together.

You won’t remember, but your Dad and I will. We’ll remember and hope that you both carry these formative years with you throughout life. Don’t forget who you are and where you came from. Remember the simple things in life, fight for what’s right, and love fiercely.

We love you!

Your Mom and Dad

I’d love to hear from parents of younger and older children. If your child is younger: what will you remember about these days? If your child is older: what advice would you give parents like me just starting on this journey?

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

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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.

Hunter (left) Troy (right)

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!

Travels of a Posterior Walker

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The following includes memories from six moms of children with Down syndrome, including myself. 

You might describe me as hard and cold. A slave driver even. I’m built of heavy metal. I can withstand the biggest blow a toddler can dish out. Parents begrudgingly bring me into their home. They really don’t want me there. I’m clunky and take up a lot of space. But more important I remind them of their child’s delay.

Still, I end up finding a place in their hearts and collective memories. That’s because I help their child accomplish one of the most visible and monumental developmental milestones of childhood: WALKING.

You’ve been there when parents gloat about their 9-month-old just standing up one day and walking. Yeah, I know. I want to run them over for you. You know what I want to gloat about? The real warriors. The ones who have to work ten times harder than any other kid on the block. The one who cries through therapy every week, but keeps on keeping on. These kids are hustling with me for months, just to prove they have what it takes. They can walk the walk!

Easter egg hunt with Troy and his twin (see the foam on the front of me)

My first warrior was Troy. A military brat, who was lucky enough to come by me through the windfalls of Tricare Military Insurance. Did you know not every kid like Troy just gets to hang with me for free? I’m usually an out-of-pocket expensive; a frivolity, I’m told. Hmph!

Anyway, this kid is a real bruiser, and stubborn as a mule. He knows what he wants and how to get it. I can respect a kid for that. Except for the fact that what the kid wants is speed and adventure and excitement. A little too much speed and adventure and excitement for me. And I’m a pretty fast, adventurous, exciting guy.

It got so bad Troy’s dad (a tough military dude) had to put foam strips all over me, because the kid kept ramming into things. Troy’s mom said I’d destroy her cabinets, but couldn’t she see it wasn’t me that was doing the damage. Troy has a twin brother, so that meant double trouble. Two kids seeing how fast they could race me down the drive way. The only bright side of this family was their travels. I left Nebraska for vacays in Minnesota, Michigan, and Florida.

I can’t tell you how lucky I felt to be passed along to my second warrior, Trevyn. Troy’s mom thought it wasn’t fair that other kids had to pay to play, so she told Trevyn’s mom to pass me along to any kid that needed me after Trevyn. And so the chain of kindness and fun began. 

Cool Cat, Trevyn

Trevyn is one cool dude, and so laid back. Mostly I stood in a corner, just chillin’. Of course, this worried Trevyn’s mom and two older sisters. They cajoled and prodded Trevyn to use me. But Trevyn and I were like “no man, let’s just be cool. Let’s just relax!” Trevyn’s mom said he must be scared of me. His sisters and even his big dad came over and pretended to walk with me to show Trevyn I wasn’t scary. Trevyn and I just laughed. The best was when Trevyn’s therapists added a swing-type seat to convince him to use me. You know what he did? He sat down, picked his feet up and swung. I love that kid!

Eddy walking at school with his mom

Eddy was my biggest accomplishment thus far. This sweet little guy is a true warrior. Even through health problems and surgeries, Eddy always tries. I also got to go to school for the first time. I’m not bragging or anything, but Eddy’s mom says he wouldn’t have been able to navigate his school without me. He took me to all his classroom centers (play doh was our favorite). We even went to the playground together; the other kids were so jealous.

When Eddy finally walked independently at 3 1/2-years-old I wanted to cry tears of joy, and would have if I had eyes.

I left a mark on the next household I visited…literally! Gavin was just as wild as Troy. It was almost two years ago, but it seems like just yesterday Team Gavin was racing for the Gold. Gavin’s house was the perfect racetrack. The main floor was laid out in a huge circle. Round and round we’d race, burning the midnight oil. Even good racers crash sometimes though. We hit walls, doors, cabinets. But Gavin and I knew we blew the rods out when we left an indelible, circular mark on the wood floors. His mom was not pleased.

The racing legend, Gavin
My favorite mall-rat, LJ

Can you believe I got double trouble again at my next stop?! I mean the likelihood of hanging with one set of twins (one with Down syndrome) is literally 14 in a million. When I was dropped off at LJ and Harper’s I thought I better start playing the lotto. But really, I already hit the jackpot with this family.

Nebraska winters are harsh, so LJ’s mom got the brilliant idea to take us to the mall so we could strut our stuff. LJ and I quickly became mall-rats, and our “Wednesday regulars” were amazed at LJ’s progress. Week after week they’d comment about how fast this cutie was getting as we window shopped.

I never knew love until my latest gig. After five arduous, testosterone-filled years, I finally got my girl!!! 

It’s been the summer of love with sweet Emilee and I. We’ve only been together for 3 months, but I think this one’s forever. At first she would scoot over to me and play with my handles, but now she shrieks with glee as she stands up and tries to walk. I can’t wait to see this sweetie take off!

My Sweet Emilee

I feel truly lucky to get the privilege to teach these amazing kids to walk. My advice to anyone that will listen is that kids with Down syndrome deserve your respect. They work so hard to be included, and be seen for who they are: more alike than different. 

Postscript: Thank you Kari, Jeanna, Tiffany, Kendra, and Stacy for sharing your sentimental and at times hilarious stories about your child with me. Although it seems that the delay in walking is fraught with worry for new parents, it also helped me realize that Troy really can do anything he puts his mind to. It’s been a joy knowing that the walker has been passed along to so many children, and made a small difference in their lives. 

How Having a Son with Down Syndrome Pushes Me to be “That Mom”

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I’m becoming “that mom.” You know the one: 

The one who honestly thinks her child 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 “retarded,” even when you argue that you “didn’t mean Troy.”

Who writes all those annoying political posts about how Medicaid cuts would impact Troy, 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 that 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 Troy, who will?

Our culture has yet to embrace full inclusion of my son. 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 son’s 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.

At the Buddy Walk on Washington with self-advocate, Kyle McKay

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 Troy 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 by 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.