family of four in a car

When My Son Asked If His Sister With Down Syndrome Will Get Her License

1k
1k

How should I answer this?

Taking a second to think, I chose to be open and real with my son.

“I don’t know if sissy will ever drive a car. Taking a written driver’s test would be hard for your sister since reading is hard for her and writing is even more difficult. So, I am not sure if she will ever drive. But, she’s only 10, so that’s a few years away.”

“That’s what I thought,” my son replied.

My 7-year-old son is a thinker and a planner. He is more of a planner than I ever was as a child. He talks about getting his driver’s license when he’s 16 and buying a truck. He talks about going to college and having his own house one day. He talks about fixing motorcycles and riding dirt bikes as possible professional options.

Sometimes, these talks lead him to reflect about his sister. “I wonder if Jaycee will go to college,” he mentioned one day.

“I am not sure. Some people with Down syndrome do, but Jaycee has difficulty learning and speaking. So, I am really not sure. It’s OK if she goes to college, and it’s fine if she doesn’t,” I replied.

“Going to college is a choice,” he replied in agreement.

Another day when we were talking about his future in building motorcycles, I asked Elijah what job he thought his sister may have one day. He couldn’t think of anything.

I told him I thought she might make a good pizza maker at a restaurant because she loves pizza and helps us make it at home. He wasn’t sure if she could follow the directions or if she could resist eating the pizza. He has a point there.

Later that day, he came to me and said, “Mom, I have been thinking. I know one job Jaycee could never do.”

I wasn’t sure what he was about to say next.

“She can’t be like you mom. She can’t teach people to talk.”

True, being minimally verbal, I doubt Jaycee could ever be a pediatric speech-language pathologist. But, I was happy that my son continued to think about possible jobs for his sister long after our conversation ended.

These conversations happen ever so often. I encourage them. We have always been open about Jaycee’s Down syndrome within our family. It is not looked at as something that is “bad.” We don’t shy around the subject. We encourage questions, and we talk about Jaycee’s difficulties as he sees them.

family of four in a car

I am grateful my son thinks of his sister. It has always been my hope that they would have a strong relationship where they consider each other’s needs. My son is on that track. He wonders what her life will be like years from now, as I do too. Jaycee may not be able to verbalize these questions about her brother’s future, but I do know she cares deeply about him. Whenever we go to the doctor without my son, Jaycee will ask throughout the day, “Bubba?” She wants to know why her brother isn’t there with her.

I don’t know what the future holds for Jaycee. I don’t exactly know what her life will look like in 10 years. But my hope is that Jaycee and her brother will have that connection and concern for each other that lasts a lifetime.

1k
1k

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

10 Things This Special Needs Mom Wishes You Knew

40k
40k

What is the definition of a special needs mom? We are the silent armies for our children. We are the unsung heroes who may never get public recognition, but continue to fight the good fight for our kids day and night. A special needs mom is the equivalent of Batman, Captain America and the Incredible Hulk combined with a side of Mary Poppins. For our kids, we aren’t just supermoms. We are their cheerleaders, their advocates, their nurses and their therapists.

My newest addition, Asher, made me a special needs mom. We all know the endless job titles and duties that go along with being a mom in general, but I wanted to share 10 things I wish you knew about my life as a special needs mom.

1. I tend to have a smile on my face when surrounded by friends and family, but on the inside, I’m constantly battling being exhausted, uncomfortable and at times, lonely. We all love our children immensely, but it wont take the pain away because we know we can’t always take away the hurt they may feel.

2. My son shows an enormous amount of love, and he needs the same shown to him. He brings joy and laughter to those who know him, but he is definitely capable of expressing other feelings. He cries and screams just as much as he laughs and smiles.

3. Knowing other children with special needs doesn’t make you an expert on my child’s diagnosis. So please don’t tell me my son is “high-functioning” or only has a “mild” case of Down syndrome. And please refrain from telling me my son looks “normal,” because who really gets to decide what’s normal in the world today? Children with special needs are all born different and develop at different paces, just like “typical” children do.

4. Even though we have moments of loneliness, we moms are able to be a part of a supportive community, whether it be on social media or right next door. It takes a village to raise any children. When you do find that mom who just “gets it,” well, it’s pretty transforming!

5. My son is smart, creative and talented. It might take him a little longer to learn things, but with help from his therapist and doctors, he will get there. Don’t ever assume my son can’t do what your children do. I don’t, and I will always motivate him to do whatever he wants in life.

6. We moms are more alike than different. I start my morning the same as you likely do. I have my coffee, shower, and fight to get everyone ready for the day. I worry about the laundry and dishes piling up, and stress over the house looking like someone ransacked it. I bicker with my spouse and all the other experiences that go along with being married. There are plenty of things we can find common ground on, and I want you to know that at the end of the day, we are all still moms.

7. My child might make noises, bang his head on me, flail his arms and legs, or even randomly start crying while strolling through the grocery store. I don’t mind if you look, but please don’t stare with your mouth wide open. He can’t help when he feels anxious or frightened, and his environment strongly affects his behavior.

8. I know my son touches other people’s lives every day. His influence on others is much greater than mine could ever be.

9. I want you to talk to your children about my child. I understand they have questions about people with disabilities, but you aren’t doing anyone a favor by not answering them. Teach them not to stare, point, whisper, ignore, or bully. Teach them to use respectful words amongst their peers. Teach them that using the R-word is not OK and is offensive to our children. Talk to them about how alike people are with disabilities to them, and encourage your child to interact with my son and even befriend him.

10. I want you to know how hard I am on myself even before all the questions asking if we could do more to help him hit his milestones come my way. I know I’m not perfect, but I’m the perfect parent for my children, and that’s good enough for me at the end of the day.

A version of this post originally appeared on My Atlanta Moms Club.

10 Things This Special Needs Mom Wishes You Knew
40k
40k
TOPICS
, Contributor list
JOIN THE CONVERSATION

To the Parents of My Son’s Classmates, From the Mom of a Boy With Down Syndrome

8k
8k

Dear Parents:

We’re so excited to be on this kindergarten journey with all of you!

We want to take a moment to introduce you to our son, Evan Rothholz. Evan is a curious boy who learns with enthusiasm. Just like your children, some things come naturally, and some things are more difficult to learn.

Evan is already learning to read many words and he can spell words like “fox,” “stop,” and “go.” He loves to count. He loves to sing and dance. He’s persistent when he’s trying to learn, and he’s quick to comfort people when they’re sad. This probably sounds a lot like your children. Evan is more like all your children than different.

Evan also happens to have Down syndrome.

Down syndrome is a genetic condition where individuals have three copies of chromosome 21 instead of two. According to the National Down Syndrome Congress, the incidence of “Down syndrome in the United States is estimated to be 1 in every 700 live births.”

People with Down syndrome may have some challenges, but they also have some great abilities. Evan needs help with strength and balance and with things like writing and cutting. He also needs a little help with his speech, though he can ask for things he wants (like his iPad or some cake) perfectly.

Evan has grown up fully included in classroom with friends who do not have disabilities, which is really important. There are many studies that show that inclusive classrooms provide academic advantages for kids with and without disabilities. It’s so important for Evan to learn in the classroom with your children, because like your children, he may grow up to do things like drive a car, go to college and have a job as many people with Down syndrome now do.

Evan enjoys doing things that all the other children in his class do. He may do them a little differently or more slowly, or he may do them just the same as the other children. He is more like his friends that do not have Down syndrome than different.

We encourage everyone to use people-first language. Evan is a boy with Down syndrome, not a Down syndrome boy. We hope Evan will be recognized for his smart, playful self, not for his condition.

Finally, we understand that you and your children may have questions about Down syndrome. We welcome them, and we’re not embarrassed if your children stare or ask questions. It means they’re interested.

Your children may notice some differences between Evan and themselves, and that’s OK. We’re thrilled to tell them that though Evan may look and talk a little differently, there are many things about him that are the same as everyone else. If you or your children have questions, please feel free to reach out to us.

We look forward to this wonderful year!

Regards,

Julie Gerhart-Rothholz


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

8k
8k
JOIN THE CONVERSATION

The Things My 2-Year-Old Son With Down Syndrome Has Taught Me

6k
6k

Before I had my son, Miles, I didn’t know anyone with Down syndrome. It made me nervous to see people with Down syndrome in public because of my lack of education and experience. I was afraid of saying or doing the wrong thing, and I didn’t want to feel embarrassed. I also didn’t know much about Down syndrome, and many of the things I thought I knew have turned out to be false.

My son recently celebrated his second birthday, and I celebrated the milestone of being a proud parent of a son with Down syndrome for two years. Over the past two years, I have learned a few things and wanted to share a couple insights on interacting with parents of children with Down syndrome:

First, what should you say to someone who has a baby with Down syndrome? “Congratulations on the birth of your baby!” “Look at all of that hair!” “What a precious gift!” That’s about it. Don’t try to guess what the parent is feeling. If it’s important for you to know, then ask, “How are you feeling?” (I guess it is always OK to assume they’re exhausted because being a new parent is exhausting.) 

Second, how should you treat a family with a child with Down Syndrome? Exactly how you would treat any other family. Invite them out to dinner. Offer to babysit. Set up play dates with your kids to play with their kid. Celebrate with them when they have something to celebrate. Pray for them when things are difficult, and send gift cards and cupcakes. If you don’t know what you can do to be a good friend, then just ask. Easy-peasy.

Finally, what do I wish you knew about having a child with Down syndrome? Having a child with Down syndrome can be difficult at times, just like having a typical child is. Having a child with Down syndrome is very wonderful at times, just like having a typical child is.

If I were given a multiple-choice test to complete during my pregnancy, I probably wouldn’t have marked the little bubble beside “Down syndrome” for my son. But now, two years later, I wouldn’t trade my son for anyone or anything in this world. I am so proud of him. He is making me a better person — a more loving, tolerate, accepting person. 

Miles has taught me to brave. He’s taught me to look for, notice and appreciate all of the amazing people with Down syndrome all around me. Miles has taught me to appreciate the things I used to take for granted. He has taught me to smile and laugh every day. 

I am so incredibly blessed to be Miles’ mom.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

6k
6k
TOPICS
JOIN THE CONVERSATION

How I'm Moving Past the 'Continuous Cycle of Grief' as a Special Needs Parent

2k
2k

There wasn’t a cloud in the sky, the pool was the perfect temperature and we laughed as our daughter pretended to be Peter Pan while making a running jump into the water. It was a dreamy start to July 4th — one of my favorite days of the year.

That’s why it caught me so off guard.

As we got out of the pool, a slow country song filled the hot, dry, Arizona air. I wrapped my son, Anderson, in a towel, held him against my chest and swayed to the music. That’s when the tears started. My husband was startled. “What’s wrong? What’s wrong?”

“What if I never get to dance with him at his wedding?” I said.

Most days, I nearly forget Anderson has Down syndrome. But these sad, fear-filled moments creep up from time to time. It’s what Anderson’s physical therapist referred to as special needs parents’ “continuous cycle of grief.”

I mostly write about how Down syndrome has impacted our lives in a profoundly positive way, because it has. But this pop-up heartache — it’s real.

It catches me in the more obvious times — when I’m waiting for Anderson to check off that next milestone. It comes in the quiet moments inside my car. And sometimes it comes when I’m least expecting it — on a picture perfect holiday afternoon.

The truth is none of us know what the future will hold for any of our children. I know that. But, when your child has a disability, the struggles are more of a guarantee. I know many things will be more difficult for Anderson, because they already are.

Don’t misunderstand my words. My hopes and expectations for Anderson are sky-high. I won’t put limits on him and I’ll try my best in his younger years to get others to extend him the same courtesy. But I do know his diagnosis will make certain aspects of his life more challenging — and when I look at my sweet, loving little boy, knowing that can feel heavy at times.

I take comfort in the fact that no one can fulfill Anderson’s purpose in this life other than Anderson. I take comfort in the fact that Anderson would not be Anderson without Down syndrome. I take comfort in knowing that these struggles he will face will shape him into the man he is meant to become.

So, when this short-lived pain seems to randomly take over my heart, I will squeeze my toddler tight, let the tears trickle down and admit that sometimes being a special needs parent is hard. But then I will remember to smile, because these moments are only so difficult because the love I have for him is so deep.

Follow this journey on News Anchor to Homemaker.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

2k
2k
TOPICS
JOIN THE CONVERSATION

The Unspoken 'Oh' of Finding Out a Baby Has Down Syndrome

3k
3k

It happened.  The unspoken “oh.” The reason I have been so open about my son Asher having Down syndrome even before he was born was so everyone would “know,” in hopes of lessening some of the awkward moments. I also try to share what I have learned about Down syndrome to hopefully educate others.

Recently I ran into someone I am not friends with on Facebook and whom I have not seen in a while. I was pushing Asher in his stroller, and this person looked at it inquisitively. I said, “Did you know we had another baby?” “No,” was his response. If he didn’t know we had a baby, then he didn’t know we had a son and that our son has Down syndrome. So I turned the stroller around and introduced him to my sweet Asher. Then there was the “oh.” 

baby with down syndrome in a high chair

The “oh” can mean many things, and I can’t always interpret it. It can mean, “oh, he is so sweet.” Usually that “oh” is accompanied with oohs and ahhs and lots of baby talk. This is my favorite kind of “oh” because, after all, he is adorable. Sometimes the “oh” can mean pity, like “oh, I am sorry.” Most of the time it probably means “oh, I don’t know what to say.” I am not sure which “oh” this was, and I thought about saying something about him having Down syndrome, but then thought I shouldn’t have to “explain” my son. I instead said nothing at all. If I could do it over again, I would say something like this:

We found out Asher has Down syndrome before he was born. Initially we were shocked and upset. Now that he is here we are really doing OK. We are actually doing better than OK. He is a true blessing and brings joy to our lives. Sure, there are times where I wish things weren’t so hard for him. For example, he has to work for every milestone (like sitting and rolling over) while “typical” children do these things with ease. 

I probably would have stopped there, but I could go on. Asher has shown me that sometimes difficulties can become blessings. I’ve always known this, theoretically, and James chapter 1 tells us this, but it is one of those things that is easy to say, but difficult to live. 

When Asher was a few months old, he was diagnosed with hypothyroidism and was prescribed medication. Not a big deal. Except that he had to take the medicine by spoon. Remarkably, we managed to get him to take it from the spoon. He has also had some problems swallowing because of his low muscle tone. Early on he had to have his milk thickened, and he saw a speech therapist who specializes in feeding because of his difficulties. We had to hold him a certain way, give him a specific type of bottle, and most of this was learned by trial and error with her guidance. She led us through all of this, and eventually he outgrew the swallowing problems and we were able to stop thickening his milk. We continued to see the speech therapist, and she was there guiding me as I gave him his first bite of food on a spoon he already knew how to use because he had been taking medication daily for a while. She also instructed me along the way on advancing his diet, showing me things to do to help him chew his food properly, etc. Who knew eating could be so difficult? Now, he is actually eating pretty well. Because he had the problems early on, we had the speech therapist early on and because he has a thyroid problem, he used a spoon way earlier than he needed to for eating. Both of these things have helped us avoid bigger problems — food aversions, gagging, and even refusal to eat — commonly seen in children with Down syndrome. 

So what is next on the agenda? Eating his first piece of birthday cake! 

baby with down syndrome eating cake

Follow this journey on Our Full Cup.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

3k
3k
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.