Everything is Still Possible

August 16, 2018 by Courtney

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!

Read Related Post: Enjoying the Quiet Before the Storm

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. As my sons’ 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 5 years of preparation to believe everything truly is still possible: That’s 3 preschool teachers, 3 pediatricians, 5 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.

Read Related Post: Class of 2031: Yes, My Son with Down Syndrome Can Go to College

So, bring it on kindergarten! We’ve done our homework; we’re ready for you. I started this blog knowing this 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.

A Mother’s Day Wish

May 8, 2018 by Courtney

These are the messy years of motherhood for me.

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.

These are the days!

How My Twin Sons’ Tee-Ball Games Became Great Practice for Inclusion

April 23, 2018 by Courtney

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.

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.

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.

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.

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.

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.

The Immortal Mom: Why I Can Never Die

November 21, 2017 by Courtney

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.

Related: Class of 2031: Yes, My Son with Down Syndrome Can Go to College

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.

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!

Related: How Having a Son with Down Syndrome Pushes Me to Be “That Mom”

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.

Related: Why Your Child with Down Syndrome Needs an ABLE Account

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.

Changing Perceptions of Down syndrome through the LEND program

November 13, 2017 by Courtney

Do you ever wish your child’s doctor, therapist, or other medical professional could spend time with your family to get a more authentic perspective of Down syndrome? Well, you can!

The 15 minutes or hour a week that medical professionals spend with our children in a clinical setting is often dominated by the pathology of Down syndrome. The focus is often on what’s wrong with the child, instead of the child’s strengths and inherent right to access and be included in society.

We volunteered to have these type of professionals shadow us in our home, as well as out in the community. The Leadership Education in Neuro-developmental and related Disabilities (LEND) through Cincinnati Children’s Hospital assigned us to a clinical psychologist and disability self-advocate. You can read about our experience when they visited our home below. This week they came with us to a community event.

Related: Our Family LENDs Perspective to Medical Professionals in Our Home

Our trainees are clinical psychologist, Kaitlyn Eichinger, and self-advocate, Rachel Rice. I love that they have a trainee with a disability participate. Rachel is one of the first self-advocates to be included in the LEND program. It’s a great way for her to continue advocating for herself, and learn how other families advocate for themselves.

Part of the Family Mentor Program requires trainees to think systemically, and communicate the complexity of community
participation by children with developmental disabilities and their families. To give Kaitlyn and Rachel an idea of how we operate in our community, I invited them to our Recreation Center’s Thanksgiving craft day.

I’ll be honest, Troy is a wild card outside of the house. I didn’t have any anxiety with inviting these strangers into our home. That’s because I’m very structured, and Troy knows exactly what to expect. On the other hand, I can’t control what happens outside of our home. Troy does great with routine outings like therapy, library visits, and swim lessons. Every where else can be tricky.

Self-Advocate, Rachel Rice, sits and Clinical Psychologist, Kaitlyn Eichinger, stands as they watch the kids do crafts

Of course, I only got pictures of him behaving well, and actually doing the craft at our local Recreation Center’s “Gobble Fest.” That’s because I was too busy chasing after him to take pictures of him misbehaving. What you don’t see is Troy running for the door every chance he gets, or rolling on the floor (literally). Troy loathes crafts, but he’s actually improved greatly in the past year. At least now he’ll sit for 2-5 minutes and paint.

Related: A Day in the Life of My Son with Down Syndrome

Clinical psychologist, Kaitlyn Eichinger, says it’s important to see Troy in environments that he’s comfortable and uncomfortable in. “As a provider, we only see what happens in the appointment. It is important for us to understand that the parent is the expert. Families are the ones who are with the child everyday living their life. We can make all the recommendations in the world but if its not going to work with the family, we are not actually helping the child or family. I need to ensure that I understand the family perspective in order to best be able to serve the family and child,” Eichinger explains.

I felt bad that I didn’t get to talk to either Rachel or Kaitlyn very much this time around. Taking three kids out on town doesn’t make for easy conversation. Next time we plan to meet at one of Troy’s scheduled outings, so they can see him in a more controlled setting. Still, I think this experience gave them a glimpse into some of the challenges we face in new situations. All important learning experiences!

There’s LEND Programs in all 50 states. If you’re interested in becoming a Family Mentor click here.

What do you wish your child’s doctor, clinical psychologist, therapist, or other medical professional new about your child? Do you think inviting them into your home might change their perspective? In what way? Share your thoughts below!