I run a tight ship in this household of five. When we’re not traveling, our days are pretty consistent. I’m known as the “Routine Queen,” and Troy thrives on it.
So, what’s a typical day like for my 5-year-old with Down syndrome? Much like any other 5-year-old boys’. Check it out below:
Our day begins around 6:30 a.m. This is actually sleeping in for Troy and his typical twin brother, Hunter. The elimination of naps at the beginning of the school year ended our pre-5:00 a.m. wake-up calls.
Troy is a creature of habit, just like his mother. Every morning, without fail, he comes to me and says “Os and milk and a spoon too, please.” Because he has Childhood Apraxia of Speech novel phrases are often hard for Troy to speak intelligibly. Routine phrases, on the other hand, are as clear as day. “Os and milk and a spoon too, please” is one example of a VERY CLEAR phrase that Troy has mastered.
After breakfast we read for a bit, before getting dressed. Troy is working on mastering a few of Down Syndrome Education International’s books, as well as his favorite Orange County Learning Program books. This kid has always been a bookworm!
By 9 a.m. we’re at private therapy for Physical and Occupational Therapy. All three of my kids think Troy’s weekly trip to ABC Therapy means playtime for everyone.
Troy’s twin brother and little sister play while Troy “works”
Troy is learning how to cut with scissors, write his name, jump with two feet together off a too-high bench, swing, and bicycle. This is all fun-and-games compared to learning to crawl and walk and dress himself. He used to cry during therapy. These days it’s cake.
Troy with his OT and PT
Troy throwing an epic tantrum, because he wants to sit in the front “this time!”
The kids get in a quick lunch before the school bus arrives at 11:45 a.m. I wish I would have gotten pictures of Troy getting on the bus, because he absolutely LOVES IT!
Luckily, his preschool teacher uses a cool app called Class Dojo. It’s like Facebook for school. One of the teacher assistants takes a ton of pictures and uploads them with a few captions detailing what they did during the school day.
On this particular day, Troy used the scale to decide which objects were heavier and work on one-to-one correspondence.
His teacher says he does particularly well with organized learning games. That’s probably because we play a lot of board games at home. They’re good for working on intelligibility, math skills, fine motor skills, and turn-taking.
One of Troy’s new favorite board games, Stack Up!
Because we have an upcoming trip, I re-scheduled a swim lesson for today. This made our day much more action packed than usual. I usually only schedule one big outing, other than school, each day.
Troy is absolutely obsessed with swim lessons. He’s gone from screaming and crying to get out to the pool, to screaming and crying to stay in. The struggle is real!
I have to admit though, swim lesson have been hard on me as of late. To watch my typical son, Troy’s twin, progress quickly across the pool to a semi-independent class, while Troy is still with 3-year-olds gets to me.
Troy is still on the far right end of the pool; his twin brother has moved 5 lanes in a year and a half. Troy hasn’t moved yet.
Some days I feel like Troy is not progressing at all. Swim days adds to this despair, but I know he loves it so much and is putting forth effort. He has made progress since he started. I often chant in my mind “remember the power of YET“!
After surviving the 5 o’clock witching hour and dinner with Daddy (who’s in medical residency and works really LONG days), we all relax and watch a bit of television. Troy asks for “Jake and the Neverland Pirates, Please.” He answers with a “Yo Ho, Let’s Go!” if I say yes.
Watching Jake and the Neverland Pirates
Daddy get’s some cuddles in and a French Hello from Troy (we have no idea how he learned to kiss both cheeks, but we love it).
Troy giving his daddy a French Hello
A goodnight story and tucked in tight for bed. Another day is done!
What’s your child’s day like? Do you have an adult child with Down syndome? I’d love to hear what their day is like too. Share below or email me!
Troy on the right, with his typical twin and Trenton
Why was this happening to us?
What health problems will he 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, and I’s 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 that 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.”
These sayings are at once completely true and false. It wasn’t until Troy’s personality revealed it self (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 this 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 see that already in Hunter’s actions.
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!
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.
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.
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!
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!
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.
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.
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.
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?
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.
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.
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.
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!
