Strips of paper with scribbles on them are strewn about the house. So are wet socks, dirty diapers, overly-loved books, and legos.
My 3 vivacious children create such a constant eruption of clatter that the neighbor often comments on the chaos.
These may also be some of the most magical years of motherhood.
My type-A personality and independent spirit sometimes prevents me from fully embracing the mess that is motherhood. Still, I’m starting to realize my magical days may be numbered.
Our son, Troy, has Down syndrome.
We talk about Down syndrome often in passing, but it enjoys a backseat to the craziness of having 3 kids under 5-years-old.
Troy’s typical twin brother, Hunter, seems immune to the term. Our baby girl, Cora, blissfully loves and hates Troy in any given moment throughout the day.
We live in a bubble. A safe and simple safe-space.
In our day to day life, no one seems to care about Down syndrome.
We love Troy; he loves us. It’s that simple.
But children grow, and life gets complicated.
Down syndrome morphs into school placement, IEPs, LRE, FAPE, inclusion or exclusion. Kids question. Teachers negotiate. Parents complain. Our family bubble takes on a slow leak.
 So this Mother’s Day I wish to cherish and immortalize these days.
I wish to remember these days as I fight to have Troy included in school, community, and work. The simply messy days where everyone is ignorant to the brutal world that sometimes overtakes unique families like ours.
My son has a late October birthday, so he’ll spend three years total in preschool. In addition, he’s receiving Extended School Year services this summer.Â
It wasn’t easy trying to convince the school that my son needed extra help in the summer. Even though Extended School Year (ESY) is a protection under the Individuals with Disabilities Education Act (IDEA), many school districts push back when parents request it. ESY is a service designed to help students with disabilities maintain all the skills they learned during the school year. The service should be in the child’s Least Restrictive Environment (LRE) and individualized to their needs. These last two aspects of ESY is where many schools seems to stray from the law. Many ESY services can be far from home, not with typical peers, or not individualized. Depending on where you live you may have heard a variation of our school’s argument against ESY:
“ESY is for students who’ve fallen behind. Troy doesn’t need ESY.”
My son at school this summer
This was the argument my son’s teacher made the first time I brought up ESY. Being a new mom, and not yet knowledgeable about the law, I acquiesced.
But the summer after Troy’s first year in preschool, I attended a Wright’s Law Seminar. The seminar highlighted special education law and IDEA. ESY came up and it piqued my interest. Peter Wright mentioned that a student doesn’t have to fall behind to get summer support. I also received several special education law books, that confirmed what Wright said.
Year 2 of preschool, I was ready to argue for ESY!
In January, I asked the teacher again about Extended School Year for Troy. She used the same argument as the previous year. Understandably, ESY costs school districts money and time; something that most don’t have. Although I love his teacher and the services my son had received so far, I wasn’t about to back down.
My son practicing calendar time during ESY
I made sure I got everything in writing, and I mentioned that by law Troy could receive ESY for “emerging skills” that he had not mastered on his Individualized Education Plan (IEP). I asked that the school begin collecting data to see if Troy in fact needed ESY. The teacher forwarded my email on to the principal. During our IEP meeting I received push back, but they admitted he had not mastered his IEP goals and ESY may be an option.
Secretly, I did a happy dance! It’s not that I’m super excited about Troy spending time at school this summer, but I wanted to set a precedent.Â
On his way to summer class
We’re military and move a lot. I wanted to make sure ESY was in his IEP from the very start of his educational career. This might make it easier to get summer services at the next school Troy attends.
Plus, even though Troy is just in preschool, he still needs extra help. I liked the idea of Troy practicing routines, classroom behavior, and working on skills like conversational speech and math in the summer. Extra help in the summer makes inclusion more seamless during the school year.
Then my local Down syndrome mom friends started asking me how I got ESY for Troy. I explained my approach and pretty soon they started asking for ESY services for their child.
We started a local Down syndrome ESY Revolution!Â
The teachers and administrators realized we were working together. Pretty soon all three students with Down syndrome were grouped together into a cute threesome in my son’s teacher’s class. They’re all working on different skills, but Troy’s teacher can use the group setting to make the summer class more like a real class. It’s worked so far!
Does your child get Extended School Year services? Do you think it’s sufficient and makes a difference in your child’s progress? Let me know about your experience below!
Like many 4-year-olds, my twin boys, Hunter and Troy, love baseball! But when it came time to sign them up for tee-ball, I couldn’t help but be anxious.Â
Typically, parents wouldn’t bat an eye at signing their twin boys up for the same tee-ball team, but our situation is not so typical. Troy has Down syndrome, and I wasn’t sure how he would be received.
Should I call and tell the coach that one of my boys’ has a cognitive disability? During the first practice should I describe Troy’s low tone, and how it may impact his ability to keep up? During the games should I apologize for my son’s performance?
In the end, I didn’t say anything.Â
We play backyard baseball all the time. Troy is as good, if not better, than his typical twin brother at hitting, throwing, and catching the ball, which is to say they both suck as much as any 4-year-old that has never played. I hoped his team would accept him as any other first-time player.
Hunter and Troy with Coach Kyle
We showed up to the first practice, and I could tell Troy was really nervous. The fact is, even though he’s as good as any other kid his age, he hates crowds. I hear about other kids with Down syndrome loving the spotlight. Troy is the opposite. If you laugh or cheer at his successes, he shuts down. I’m not sure if he thinks people are laughing at him, or if it’s too much sensory overload.
His seemingly lack of interest in the game was predictable, but still bummed me out. I wanted his team to see the enthusiastic ball player I watch in our backyard. I did mention to his coach that Troy has Down syndrome, and he may or may not decide to play. “That’s ok, right?” I asked with bated breath.
Coach Kyle, a laid-back father of two, said “This is my first time coaching. I think we’re all nervous. Let’s give him some time to get use to his team and the game.”
This is inclusion at its finest, and Coach Kyle seemed to come by it naturally. There was no hesitation to include Troy. Just an open-mind, and support if needed.Â
Troy playing 3rd base
I wish I could say the team’s acceptance of Troy made his apprehension to play go away. It didn’t. He practiced with the team, he even played the field a few innings each game, but when it came time to hit the ball stage fright took over.
It took 5 games for Troy to finally hit the ball. But when he did you could see the pride and pure happiness in his face!
More importantly, you could see the excitement in his teammates and their parents’ faces! They were genuinely excited to have Troy as part of the team, and more important see him succeed.
Troy’s first hit
One particular player, 5-year-old Michael, always made a point to talk to Troy during the games he didn’t play. When Troy played his first full game, you could see the impact it had on Michael. He was so proud of his friend.
Although most of the kids on Troy’s team are too young to understand Troy’s difference, there’s still an important lesson to be learned by his presence. I know these sports encounters will become less as Troy gets older. We expect that Troy will play on typical sports teams, as well as in the Special Olympics. But its these early encounters that change perceptions of individuals with Down syndrome, and opens doors for Troy later. His teammates will one day be employers, teachers, or friends that will remember that Troy is more alike than different.
I can never die. Literally. Not even of natural causes or old age. I’m convinced I must live forever, and not because I have some fascination with vampires. I mean, technically I would be happy to pass on at some point, but it would have to be the right moment.
I’m sure most moms, especially moms of young children, have this thought. We must keep it together until our children are grown and can get along without us. But this thought of forced immortality seems to grow exponentially when you have a child with an intellectual disability. Will these thoughts ever go away as my son, Troy, who has Down syndrome gets older?
Of course, the goal of motherhood is to work yourself out of a job.
This is no different when you’re a mother to a child with Down syndrome. Still, there are many more hoops to jump through to reach that goal, and even if you do your best your adult child will likely still need a lot of support.
Parents are the expert of their child. No one will advocate for our child like we will.
No one knows Troy like I do. The intricacies of a life with my son are endless. Only I know when all his therapy and medical appointments are, and exactly what is said and done in each one since birth. Only I understand every phrase he tries to speak and the made up signs he uses to get his point across. Only I know all the latest and greatest when it comes to Down syndrome advocacy and education, and how Troy would benefit.
You might ask, where’s the father? My husband actually is a Troy expert in his own right. As a medical doctor, he knows all of Troy’s medical history better than I do. He attends especially important medical appointments and all surgeries, to advocate for the best care. He helps me decipher the doc talk, and particularly confusing treatments or diagnoses. When it comes to Troy’s medical care, I would be lost without him.
Troy with Daddy
Thankfully, Troy is a really healthy fellow. His biggest challenges will be social and educational, which are firmly planted in my domain of power. As a former educator, and current COPAA Special Education Advocate it will be me who steers Troy to future independence. It’s a lot of pressure!
I’ve even wrote a posthumous letter to Troy’s future IEP team, because I will never cease to be one of the most important members of his IEP Team. Not even over my dead body, thank you very much. You may think I’m crazy, but no one is going to fight for full inclusion with proper supports like I will. No one believes that Troy should be included with his typical twin throughout his educational career like I will. No one is going to pre-teach, post-teach, and snoop around at school to make sure his educational goals are met like I will.
Check out my Posthumous Letter to Troy’s IEP Team Here.
Of course, I realize life is too short and unfortunately no one gets to decide how long they stick around. So, the only thing that quells my anxiety surrounding this topic is planning and teaching others to advocate for Troy. We have a special needs trust, a will, a regularly updated “letter about Troy” attached to that will, an ABLE account, and pretty soon we’ll sign my husband’s posthumous military retirement income over to Troy in a trust.
Beyond the financial planning, I do a lot of soft planning. Like the posthumous IEP letter, I also talk to my husband, and all our immediate relatives about what Troy is doing now and what short and long term goals we’re working on. Lastly, I talk to Troy’s typical twin often about including Troy. Although he’s only 5-years-old, I know he and their 2-year-old sister will likely be Troy’s advocate longer than any other person. I believe it’s imperative that I plant the seeds of kindness, inclusion, and advocacy now, so that Troy’s siblings can naturally and willingly step into my shoes when I’m gone.
Please tell me that I’m not alone in these thoughts. Although dark, I feel like these feelings are important to write down and plan for. Tell me what you think below.
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!
