13 Things I've Learned in 13 Years Parenting My Son With Down Syndrome

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My son, Alex, has Down syndrome. He recently celebrated his 13th birthday. Now officially a teenager, we’ve opened a new chapter in that non-existent parenting guide we wish we had. To commemorate our entrance into the teen years, here are 13 things I’ve learned in my first 13 years of parenting:

1. There are few guarantees in life.

After Alex was born and I was released from the hospital to visit him in the NICU at a different hospital, I was given time alone at his bedside to bond. I almost immediately became overwhelmed with sadness, envisioning what I thought his future would be: no prom, no driving, no college graduation — all because of his Down syndrome diagnosis and the misinformation I had received. Then, it sharply occurred to me there are no guarantees in life. None. It is what we make of it. And with that, I became an advocate. We’ve learned the importance of flexibility and celebrating every little milestone. It’s my goal to help him achieve whatever it is he wants to do. He’ll get there, eventually, with the proper support and encouragement. That is something I will guarantee.

2. I am an excellent hoop-jumper.

From the time Alex was just a few months old, and probably forever, I’ve been jumping through hoops to get what Alex needs. I’ve learned an initial “no” does not always remain a “no.” To get it to a “yes” though, sometimes requires jumping through endless hoops. Fortunately for Alex, his mother is pretty stubborn, and someday I do expect to earn a gold medal in hoop-jumping from the “Disability Parenting Hall of Fame.” If not that, then perhaps a bronze in Sarcastic Blogging?

3. I will make mistakes, I will stumble, I will lose, but I will never give up.

I’m constantly learning how to be a better parent for all three of my kids. Parenting Alex, so far anyway, has proven to be the most challenging. Fortunately, we have a lot of support and resources to help us along the way. That said, I am far from perfect, and I will screw up along the way. It has happened, and will happen again. The most important lesson I can take from that is to not give up.

4. The opportunities to educate others are endless.

Not many people know a lot about Down syndrome or the disability community in general. I didn’t before Alex was born. I will ashamedly admit I was an ignorant user of the “r-word,” and I wish someone had called me out. I should have known better, but I didn’t, and I contributed to the problem. There are so many opportunities to teach our peers about Down syndrome and inclusion, and while finding the best technique to do so is tricky, it’s worth it in the end.

5. Finding your tribe is important.

Parenting takes up a lot of time, and often, we find ourselves distanced from our friends just because there aren’t enough hours in the day. This is especially difficult for parents in the disability community, as we can endure extra challenges on a daily basis. Having someone — or even a group of people — who truly understand why it takes four days to return a text, are supportive when you have to cancel plans at the last minute and who don’t judge you when you look like a zombie more often than not, are so important to have in your corner. If you have a tribe, be thankful. If you can bring someone into your tribe, do it. We need each other.

6. Introverts make pretty good advocates.

I am an introvert — I do not like confrontations, speaking in front of people or being the center of attention. I’ve learned though, that when I do have to do any of these things, I can handle it. I never thought I would have to speak up the way I have, and I know I have a lot to learn, but I’m proud of the advocate I’m becoming.

 

7. Not everyone advocates the same way, and that’s OK.

Just like we all have different parenting styles, parents in the disability community have different advocacy styles. I often feel like I’m falling short as an advocate, and catch myself comparing my actions and philosophies against others. We are the experts on our own kids, and we’re trying to do the best we can. I am trying to remember that as I continue to learn the best ways to advocate for my son.

8. Siblings are awesome.

Alex is fortunate to have two younger siblings, both of whom are becoming terrific advocates for their brother. I am always impressed to hear them stand up for their brother when he’s not being included and they are confident enough to do this without prompting. While it’s not always easy being the sibling of someone with disabilities, they do know the importance of advocacy and inclusion. They are both amazing kids and I am very proud of them.

9. Nothing is as picture-perfect as it seems.

With social media being such a driving force in our daily lives, it’s difficult to avoid feeling the pressure of presenting the “perfect family.” While I’ll be the first to tell you my household is a hot mess, I feel bad my photos and posts on social media give an illusion that everything is sunshine and unicorns. That is just not true. Each day brings many challenges, and I’m just trying to get through it all with a little humor and grace.

10. Kids are gross.

This has nothing to do with disability parenting — it’s just a fact. If I never find a booger smeared on a window again, I would be a happy lady.

11. Rest is important and that is annoying.

Caregiver fatigue is a real thing. Parents of kids with disabilities are often running on high levels of stress and exhaustion. I can’t tell you how many times, in the last 13 years, I’ve been encouraged to “relax” or “just breathe.” Sorry, but it doesn’t work like that. Even if I had the time, I don’t have the staff to cover all of the daily responsibilities which would allow me the relaxation I need. Although he is 13 years old and is growing to be more independent each day, I still can’t leave Alex unattended as I would a typical 13-year-old. It is what it is. That said, I can always tell when I’m ready to hit a wall. Aside from the obvious crankiness and exhaustion, I will earn myself a nice migraine when I’m not careful to take a break. This is also something I need to work on: more breaks and not feeling guilty for taking them.

12. The laundry will never be done, so don’t even try.

I’m constantly trying to conquer Mount Washmore, and it just never gets any smaller. At this point, as long as everyone has clean underwear for the next day, I consider it a success.

13. Being a mom is by far the best thing I have done in my life.

As frustrating and exhausting as it may be, there is always a joyous moment in my day. I wouldn’t trade being my kids’ mom for anything, not even for someone who could contain Mount Washmore. And that says a lot.

As my kids continue to learn and grow, I will do the same as a parent. They are teaching me far more than I could ever teach them. Here’s to the next 13 years!

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To My Childhood Self, From a Doctor Whose Brother Has Down Syndrome

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Dr. Kishore Vellody is a pediatrician and medical director of the Down Syndrome Center of Western Pennsylvania. He is also on the Executive Committee of the Board of the National Down Syndrome Congress. In March 2015, he created the Dear Self About Down Syndrome blog where families can share their personal experiences with their loved ones with Down syndrome. The blog has been viewed in over 40 countries, including many where there is limited access to care for children with Down syndrome. You can contribute your story here. Below is Dr. Vellody’s letter to himself.

Dear Childhood Self,

You remember so well growing up with your brother Das. You and he were so close in age, and you both always seemed to enjoy being together. You didn’t realize there was anything different about Das at all until someone else pointed it out. You didn’t know what to do with that information – it didn’t make sense!

You spoke with your parents, and they confirmed that Das indeed had some special challenges you did not have. You became so upset because you never realized that was why Das struggled so much more to learn things than you did. You just thought that’s how all brothers were! It just always seemed to take Das a little bit longer to be able to pick up the games you were playing, but he always did. All through his education, you learned patience by watching him struggle, persevere, and then ultimately accomplish what he wanted to do. And then you saw the unbridled joy in his face when he finally got to say “I did it, ‘Kis-ow!’”

As you got older, you started to wonder about the fairness of it all. Why did Das have to struggle with so many things that came so much easier to you? Why would God make a child have to go through all that? Your struggles reached deep into your core and rocked you spiritually. You began to doubt God’s existence altogether for so many years.

Then, in what you can only describe as a miracle, you began to see all his qualities that were always there but taken for granted. You began to see Das’ ability to love everyone unconditionally. You began to personally experience Das’ very real forgiveness whenever you messed up. You found that Das resembled your view of God more than any other person you had ever met. It was then that you realized you were the one born with one chromosome too few, and Das was born with just the right amount. You came to believe God’s version of perfection was different than your own.

Hang in there, Kishore! God’s got quite a roller coaster ahead of you, and the exhilarating time is on the way. You are going to get a dream job as medical director of a busy Down Syndrome Center, where you will be able to indirectly give back to Das by caring for thousands of children with Down syndrome. You will be invited to join the board of the National Down Syndrome Congress and get opportunities to share your medical and personal knowledge about Down syndrome with families all over the world. You will have tears in your eyes when meeting new parents who say that nobody else had yet congratulated them on the birth of their beautiful baby.

You are going to bring hope into the lives of not only those parents, but also to siblings in ways you could never have dreamed. And after many struggles of your own along the way, you will hear yourself exclaim, “I did it, Das!”

Sincerely,

Your Adult Self

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To My Friend Who Just Received a Diagnosis for Their Child, I Will Be 'That Friend'

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My dear and blessed friend,

As you go through this incredible journey, I want to let you know two things: first, I am so thrilled for you and so happy you get to experience motherhood right along with me; and second, I will be “that friend” for you. I will be that friend who knows what feels like complete darkness, who understands irrational fear, who has had the unspeakable thoughts, who can celebrate arbitrary milestones because the “baby book” ones don’t really apply.

Right now, you might be a scared mamma. You’re trying to make sense of a diagnosis and to anticipate what this new, unexpected life will bring. Here is what I can tell you:

You might go through days when you are scared out of your mind. Not in a typical “new parent” kind of way, but in a heart-wrenching, panicky, gut-splitting way. I will be the friend who understands. I’ve been there. I’ve shared those thoughts. I’ve cried those tears.

You might spend an unplanned amount of time in a hospital. You will stand in the tiny shower with tears streaming down your face because you don’t know what to do next. You will question your ability to be a good mother because you forgot to write down the name of every doctor you talked to. You will rub endless amounts of hand lotion into your chapped skin, dry and bleeding from so much hand-washing. I will be the friend who understands, the one you can message while the baby finally sleeps. Because I know what your other mom friends don’t. I know the feelings of inadequacy, the sting of having to wait another day before discharge. I’ve felt the physical pain of my child being stuck for the umpteenth time in a tiny vein, or being wheeled off to another lab for another procedure. I’ve been engulfed by the loneliness known to moms like us, forgotten just a little bit by our counterparts with their healthy kids sleeping comfortably in their beds, with baby monitors instead of heart monitors and penguin-shaped humidifiers instead of oxygen tanks.

You will become your child’s greatest advocate. But that might come after what feels like a very dangerous learning curve. You might feel stupid and question yourself more times than you can count. And then you will rise. I will be the friend who recognizes that path to knowledge. I’ve searched online till my contacts fell out because they dried up from hours spent behind a screen. I’ve called hospitals around the country for second and third opinions, even though our hospital is nationally ranked in the top three. I’ve stood my ground against doctors and specialists and nurses who assured me they knew best. And I was right. And I learned. And you will, too. But as you do, you will need support from someone who has learned and risen, and I will be that friend.

 

People will say, “every child has special needs,” and you might want to play that game. You might want to compare, but the tears won’t let you get the words out. You might want to throat punch them, but you will know they mean well and are trying to “normalize” your situation. You will hold in a hundred thoughts and tidy little inoffensive comebacks, but you will want to let them out later. And I will be there. I will be that friend. And you can one-up me all day long, and I won’t bat an eye.

And please hear me, nervous mama, you will have things in your head that most of your friends can’t relate to — acronyms to fill a three-ring-binder, helpful tips you may never get to share (make sure to tell the power company you have an oxygen tank; the surgery waiting room has the best coffee; when a lineup of docs follow you into the family update room, it’s probably not good news), terms that shouldn’t apply to children, much less your own (life expectancy, mortality rate, special needs trust, experimental treatment/drugs), smells that never go away. You will want to toss these into daily conversations because some days they’re all you think about. But you know you can’t. I will be that friend. I’ve heard those words, I’ve kept those records. I’ve looked around for people who need to know my vast wealth of information on one diagnosis and a bunch of complications. You don’t have to start from zero with me, and you won’t have to wonder if I can relate. I can, and I will. I will hold your hand, and I will listen to your trivia and to your fears. You can unload them on me, and I won’t be afraid.

This baby you’re carrying will change you. You will keep your friends and your support system, and you will have celebrations and fears that all parents have. We will all be there for those. But this baby will change your circle. You will feel isolated, you will cry, you might be ashamed of your thoughts. You will need someone who understands that without judgment. Let me be that friend. Let me get your three page text, and rub your slumped shoulders, and hold your cracked hands, and hear your broken sobs. I can do that. I will be strong for you. I will cherish the smallest triumphs with you because I know you fought for them. I will see beauty in all of it, and I will delight in your miracle.

I will be “that friend” that few will be able to be. I won’t minimize, judge or recoil. I will understand, from the very depth of my soul, how this journey goes.

And I will be there.

I will be that friend.

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Dear Doctor, My Son With Down Syndrome Is a Joy

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Two years ago, on this very day, you gave me some news that changed my life. You told me my unborn son would be born with Down syndrome. This must have been hard for you. I don’t know if this was the first time you had to do this or if you had done it before. Perhaps you felt you held the responsibility of crushing my dream of who I imagined my child would be.

I believe you delivered the news to me the best you knew how. You said you were sorry many times. And you quickly rushed to help me with my options. Options that I took very seriously. I was traumatized and your solutions were very enticing. I did not like the news you were telling me and if I could get out of the situation I was willing to listen. I knew nothing about Down syndrome and I looked to you for guidance. You told me everything you knew about Down syndrome and it sounded very bleak. You told me about all the things my son, Cody, would not be able to do and all the possible problems he may endure. It sounded horrible and I thought maybe your suggestion of terminating my pregnancy or giving Cody up for adoption would make my life and his much better.

I am writing you this letter because you deserve to know the outcome of my story. I want you to know that your role as the deliverer of a Down syndrome diagnosis to future mothers may look a lot different when you hear my story about Down syndrome. Yes, I needed to know the hard stuff about Down syndrome, that is your job, but I wish you would have started with the positives, because there are so many!

Despite Cody’s Down syndrome diagnosis, I have a very capable, happy, adorable little boy who is easy to love. I absolutely love being his mom. I cannot imagine my life without him. It’s different and not what I expected, but it is not bad, it is not scary and it is definitely not something to be sorry about. I believe terminating a pregnancy just because of a Down syndrome diagnosis should not even be a consideration. People with Down syndrome can achieve so much and contribute great things to our world. Cody is so much fun, with an energy we can barely contain. He is full of smiles, has big blue eyes that melt your heart and his contagious giggles make him a constant joy to be with. He fits in perfectly with our family and is always right in the middle of the fun with his big brother and sister. His Down syndrome diagnosis does not define him, and honestly we forget about it most of the time. 

I have met a lot of parents of children with Down syndrome since I received my diagnosis and none of them are unhappy or miserable being a parent to their child. Women that receive a Down syndrome diagnosis need to know this!

Sure, some days are hard and frustrating and the extra time needed to accomplish milestones can be challenging, but my other kids are also hard and cause me frustration, just in other ways. Cody has not decreased my quality of life at all. In fact, he has given me new purpose and I have grown so much as a person since he has entered my world. I am more patient, less critical, I hand out grace more freely and I have learned about inclusion and acceptance of all people.

 

This growth has led to me being a part of starting an inclusive program for students with intellectual disabilities at the college where I work. Yes, people with Down syndrome can go to college! This fall 12 students with various intellectual disabilities, including Down syndrome, will come to Judson University in Elgin and live in the dorms, eat in the cafeteria, go to classes, participate in co-curricular activities and gain work experience through both an on-campus job and an off-campus internship. These students will be prepared for independent living and pursue competitive employment at the completion of the program. The world is such a better place for people with Down syndrome thanks to so many who have seen the value and significance that these wonderful human beings have despite the stereotypes and false perceptions. I feel honored that I am a part of moving society forward in inclusion and acceptance.

Approximately one in every 700 babies born in the United States is born with Down syndrome, so there is a good chance you may have to give a Down syndrome diagnosis again. If you do, please don’t tell them you’re sorry. Do not start with the negatives. Communicate to them that it will be a different road than expected but that it is not a bad one. Educate them about the many therapies and services ready to help their child achieve. Tell them that people with Down syndrome are included in mainstream school and can even go to college and hold meaningful jobs. Make sure they know that most parents enjoy having a child with Down syndrome and instead of giving them the phone number to an abortion clinic, give them the phone numbers of some local moms that have children with Down syndrome so they can seek advice and reassurance from them.

My hope is that my story has inspired you to learn more about Down syndrome and that you will deliver the news of any future diagnosis with encouragement and hope. Reinforcing to these parents that, despite their fears and probable challenges, they need to be brave. Brave to have faith and embrace this different and wonderful gift that they will soon be so thankful for. And please, don’t feel sorry for them, they just hit the jackpot.

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To All the Dads Who Love a Child With a Disability

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This might be one of those cheesy posts my husband despises. Actually, I recently went up onstage at an improv comedy show and they asked me to describe my husband so they could act him out. I told them he was cynical, yet loving.

He is so much more than that. And he will never let on to how much he actually does for our kids, especially for our little Harrison.

But I have been secretly photographing him with Harrison for the past few months when he doesn’t know it, and the photographs, though not professional, tell a beautiful story.

It’s not always easy raising a child with a disability, but Vincent, my amazing husband, embraces each moment of it and shows our little Harrison lots of patience and love.

Since my husband doesn’t like cheesy posts, this is dedicated to all other dads like him. Because it’s these little things you dads do that make your kid ask for “Dadddyyy!”

I see you stop whatever you are doing to read a book to your kid. Your kid carefully picked the book out or he picked out a book that had a pig on it or he randomly grabbed whatever was on the ground. You read it to him because any of those reasons are huge for him. The fact that he leaned down, picked up a book, and walked over to you is a milestone in itself that has taken years to accomplish.

I see you take your kid outside to go for a walk. He signed “outside” and “walk” together, so, to keep encouraging his stringing of signs, you quickly put on his socks and shoes and take him outside for a walk.

And when he gets tired, you carry him.

 

I see you take care of him when he is sick. You’re the first to jump up when you hear him at night (well, most of the time). Even if he is just stirring in his sleep, you fill up his water cup and take him his water. You call your wife several times throughout the day to check to see how he is doing.

When the sickness becomes serious, you’re the one who takes him to the ER. Multiple times. You’re the one who insists on staying with him for when those inevitable ER visits turn into hospital stays.

You take him to the studies I can’t emotionally handle. A.K.A. The “Dreaded Sleep Study.” (All kids with Down syndrome need to have this study done before age 4 since they have an increased chance of sleep apnea.) I’m still in awe of how you survived that.

I see you share your snacks. And I see you hold the water cup while also encouraging and teaching your son to hold it on his own.

I see you get sad. As a father of a kid with a disability, I see you realize you can’t fix everything. The frustration that comes with another illness that you know will take your son two times longer to get over, or the heartache that comes with yet another medical diagnosis is wearing.

Yet, you continue to lift your son up. When the world looks down upon him because of his disability, you lift him above so he can see things from a different perspective. To see that God loves him. To see that he is fearfully and wonderfully made, and how we should all stand back in awe of God’s goodness.

So, thank you, Dads of kids with disabilities. We notice all the little things you do. We see you and we thank you.

Follow this journey at Down By the Marsh

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'Seeing the Forest for the Trees' in My Son's Future With Down Syndrome

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Courtney with Troy at 6 months old.
Courtney with Troy at 6 months old.

My son, Troy, is almost 5 years old. When he was born I knew no one and nothing about Down syndrome.

I was hungry for any information I could find about Down syndrome. I spent the first month of his life on Google (bad idea, by the way). I quickly graduated to national conventions, advocacy groups, and now specialized training in special education law.

Secret Facebook groups and specialized books taught me all I need to know… Or so I thought.

Nothing can replace experience. Living life with someone who rocks an extra chromosome gives you a front row seat to the docudrama that is Trisomy 21. Troy has taught me so much about how outdated stereotypes and low expectations can warp your perception of disability.

But living with a preschooler with Down syndrome often reminds me of the saying “It’s hard to see the forest for the trees.” We often get lost in weekly therapy sessions, frequent doctors’ appointments, and impulsive behavior.

Self-advocates at a communication workshop.
Self-advocates at a communication workshop.

For a while now, I’ve been searching for ways to steal a glimpse into Troy’s possible future. I really want to see “the forest.” One way I’ve done this is through a monthly communications workshop with adult self-advocates. Simply talking and interacting with adults with Down syndrome on a regular basis has taught me so much about what our future may hold and how to plan for the best.

This led to an opportunity, from our local Down syndrome group’s Executive Director, to talk about the impact of our communications workshop on a local radio show.

Walter (bottom left) with MVDSA Executive Director, Willie Cox, and I at iHeart Radio.
Walter (bottom left) with MVDSA Executive Director, Willie Cox, and I at iHeart Radio.

The natural pick for my co-interviewee was Walter, a 45-year-old iHeart Radio lover. When we showed up to the radio conglomerate, Walter already had long-time friendships with every disc jockey, knew which of the seven radio stations they were assigned to, and the exact times they each went live. Everyone hearts Walter!

I worked in radio for some time during college, and I came to appreciate the intimacy of the medium. You have to capture that emotion and authenticity the first go round, because your listeners can’t rewind or reread your story.

A common rally cry in the disability community is “Nothing about us, without us!”

Without Walter our story of advocacy would be flawed. We spoke with the radio DJ about needed services and jobs for individuals with Down syndrome. Walter nailed the interview. He gave our radio interview the authenticity and emotion the audience will remember.

He was direct: “Hi, I’m Walter. I have Down syndrome and I’m proud of who I am.”

Walter cracking jokes on-air.
Walter cracking jokes on-air.

Not to mention, funny: “107.7’s DJ, Chris Davis, promised to pay me if I mentioned him today. Chris, are you listening?”

I like to imagine an expecting or new parent, with what seems like a scary diagnosis, randomly tuning in just as Walter is proudly talking about his job at the Tennis Club. I know I would have loved to hear Walter when I was struggling during Troy’s first few months.

At 45 years old, Walter did not get all the great services Troy receives through early intervention and inclusive education. Still, Walter thrives! It’s so important to remember what you’re actually advocating for sometimes. Just like Troy, Walter deserves a life of self-determination and choice. We really have to listen to our self-advocates at all stages of life to understand their needs and how to pave a better path forward.

If you’re interested in hearing our radio interview, or just want to learn more about our journey of inclusion and advocacy, visit us at www.inclusionevolution.com.

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