Tag: Down Syndrome

Choose Your Focus

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On the way home from school today, Josie suddenly asked me, “Would it be hard if I had a disability, too?”

Since I was completely caught off-guard, I asked her, “What do you mean?”

She answered me, “Would it be hard if I had a disability like Moses?”

I thought for a few seconds and gave her my honest answer: “No, I don’t think it would be hard. We would do whatever it was that you needed to live your best life. And we would love you just like we love you right now.”

At that point, we had pulled into the garage. She got out and went inside. By the time I got Moses out of his car seat, gathered all of my stuff, and got inside, the conversation was clearly over. She had already unpacked her backpack, gotten herself a snack, and turned on the TV.

To be honest, I didn’t think anything else about the conversation, either, as I started putting my things away, unloading the dishwasher, and mentally preparing myself to clean the shower in my bathroom. (I would rather dust all day long than clean that shower.)

A few hours later, Josie was across the street playing with her friend, and Moses and I took Opal for a walk. Not long into the walk, he reached over and grabbed my hand. Every few steps he would stop, squat down, count to three, and then he would jump up and I would pull a little to help him go even higher. He loves this game and the laughs we both get out of it are the best.

After a while, he stopped jumping and we just walked hand-in-hand. At one point, I looked down at him and he looked up at me and smiled. It was one of those smiles that shines of pure happiness and love. One of those smiles that catches your breath and your heart.

That’s when I thought back to the question Josie had asked me earlier. And I thought to myself, “This isn’t hard.”

Yes, having a child with a disability comes with challenges. And if I focused on the challenges and dwelled on them day-after-day, then I would surely say it’s hard to have a child with a disability.

However, when I watch my son laugh and play and enjoy this life he’s been given, I find it difficult to see the hard. If he’s not dwelling on the challenges he has, then why should I? What good would that do him? What good would that do me?

There are times to focus on the challenges. When they are having a negative impact on him, they need to be addressed. There are some instances when it is in his best interest to be proactive and attempt to address potential challenges before they arise.

I do the same thing for my child who doesn’t have a disability.

But that’s not where I choose to keep my focus.

Ever since I found out my child was going to have Down syndrome, it has been important for me to remember that I have a choice about how I look at things and what I focus on. And I choose to look at my son and see the strength and determination and joy and love that he has. I choose to look for the solutions to the challenges he faces and focus on implementing them. I choose to advocate for what will help live his best life rather than accept certain things as-is.

There are times that it would be easier to focus on the challenges. To focus on the hard. But if he’s not choosing to do that, then why should I? Why should anyone?

I would much rather focus on that smile that catches my heart.

What do you choose to focus on?

When Will Progress Be Enough?

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When it comes to people with disabilities, there has been a lot of progress in this country over the past 100 years. For example, people with disabilities are no longer forced to be sterilized, doctors do not recommend that babies born with disabilities such as Down syndrome and cerebral palsy be institutionalized instead of raised at home with their families, employers cannot discriminate against hiring people with disabilities, schools are required to provide a free and appropriate education to all children, and there are many supports available to people with disabilities and their families. 

While this progress is great, it is not enough.

For the past 8 months, I have had the honor of participating in a program called Partners in Policymaking which is hosted by the Missouri Developmental Disabilities Council. Each month, I have participated in Zoom meetings listening to speakers and advocates from across the country share information and experiences about the issues that impact people with disabilities. 

Through this experience, I have learned that people with disabilities in our country still face many obstacles and discrimination and families are still having to navigate systems that are, in many ways, stacked against them.

I have learned that in education, special education has become a place instead of a service. In doing so, it has created segregation in schools that does a grave disservice to all students. Students with disabilities are taught to succeed in a segregated environment and are denied being a part of the “real world” the education system is supposed to be preparing them for. Students without disabilities are taught that students with disabilities are different and cannot do the same things they can and it’s really important to be nice to them. 

I have learned that sheltered workshops serve to keep people with disabilities segregated from the general public by giving them jobs that are carried out in isolation or with a group of people with disabilities(i.e. sheltered workshops). There are given “jobs” such as taking bolts off screws and then putting them on again. They are paid subminimum wages to “protect” their ability to qualify for Social Security and Medicaid benefits instead of paying them a fair, living wage that would allow them to pay for the things they need to live a healthy, successful life. 

I have learned that people with disabilities are stripped of their rights when they turn 18 and are put under guardianship of an adult. The guardianship that is designed to “protect” them strips them of making decisions about where they live, what they can spend their money on, who they can spend time with, if and where they can work, if they can have a romantic relationship, etc. etc. As one speaker told us, prisoners on death row have more rights than a person with a disability under a guardianship. 

I have learned that there are people in leadership positions (i.e. government, healthcare, education, etc.) making decisions that directly impact the lives of people with disabilities who have little or no personal knowledge or experience of living with a disability. Many times the decisions that are made may sound good in theory but ultimately are not in the best interest of people with disabilities.

I have learned that it’s really not that difficult to have a child with a disability. It’s very easy to love him and meet his needs because he is my son and that’s what a parent does. 

I have learned that it is not up to anyone other than the person with a disability himself to decide what he can or cannot do; can or cannot learn; can or cannot achieve. It is up to the people in their lives to ensure that they are able to live the life they want.  

I have learned it is the policies and practices in place that make it difficult to have a child with a disability. 

I have also learned that there are solutions to all of the issues and challenges people with disabilities and their families face. 

In the area of education, there are multiple studies that highlight the benefits of fully inclusive classrooms, one of which is higher academic scores for ALL students – both those with and without disabilities. (Interestingly enough, there are no studies that say otherwise.) An inclusive classroom is one in which all students feel a sense of belonging and purpose; all students are integral in building the community in the classroom; no one is expected to change in order to belong. The community is built around the idea of finding commonalities so that everyone can learn from each other. As far as academic content, it is taught with modifications and accommodations in place to support the success of all students, such as having a co-taught class with a general education and special education teacher. Another benefit of inclusive educational settings is that all students are also being prepared to be successful in the real world. 

I have learned that when people with disabilities are taught and given the appropriate supports, they can be successfully employed and earn a living for themselves. There are services such as  vocational rehabilitation that will work with a person with a disability to help him identify the job he wants and then ensure that he has access to the things he needs to be successful in that job. For some people that might be that they are taught certain skills they will need on the job. For others it is helping to fund the education needed to be able to obtain the job they want. They will work with employers to determine how to best help the person with a disability to be successful. People with disabilities deserve to have real jobs, make real wages, and work within real businesses. 

I have learned that supported decision-making is a much more appropriate approach to supporting individuals with disabilities as they enter into adulthood. Instead of placing them under a guardianship, which removes some if not all of their personal rights, developing a supported decision-making team and plan ensures the person with a disability has as much autonomy as possible over her life. Supported decision-making involves the person with a disability at the center, asking her questions such as: What are your goals? What do you need in order to reach those goals? Who can help you if you need it?  Decisions about the person with a disability are made with her instead of simply for her. 

I have learned that people in leadership positions do not necessarily intentionally make decisions that adversely impact people with disabilities. Many times it is simply because they have no personal experience with disabilities and don’t have the information needed to make more informed decisions. Ideally, they would be actively seeking out that information themselves. However, in reality, I have learned that it is usually up to advocates – individuals with disabilities, parents or family members of people with disabilities, people who have personal and/or factual knowledge what it is like to have a disability – to speak up. To request meetings. To present data. To bring the information necessary to those making decisions so that decisions and policies can be made that are truly in the best interest of ALL people.

I learned these things from specialists in these different fields – parents, teachers, government officials, policy makers, and most importantly, self-advocates. One of the most impactful speakers I had the honor of learning from during this course was a self-advocate named Ken Capone who was born with cerebral palsy. His parents were recommended by his doctor to put him in an institution because of his disability. Thankfully, they did not listen to him and raised their son with the rest of their children. They advocated for him to attend school in the general classroom and he graduated from high school with the rest of his class. He now lives independently and has a full-time job. He has a bill named after him, The Ken Capone Equal Employment Act, which makes it illegal in the state of Maryland to pay people with disabilities sub-minimum wage. I learned all of this by listening to him as he used a head stick to type on an iPad and then had it speak his words aloud. And he was able to do that because his parents focused on his abilities. Because he was fully included in the educational system. Because he was supported in finding a job he wanted and enjoyed. Because he had people in his life that advocated for him and supported him in his dreams and goals.

Again, a lot of progress has been made in the past century regarding people with disabilities in our country. I look forward to seeing more changes being made in education, employment, and other policies so that one day people with disabilities do have equal rights, opportunities, and access in our country. Only then will it be enough.

If you’re wondering what you can do to help ensure that the needed progress occurs, first of all, you have to believe that people with disabilities are valuable and deserve equal rights, opportunities, and access. Next, learn more. Ask questions and be open to answers that challenge your existing views and beliefs. Finally, be willing to speak up in support of people with disabilities.

I hope to see “enough” reached for my son and all those with disabilities sooner rather than later.

The Perfect Tea Party

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This evening after the kids and I had gotten home for the day, Josie went across the street to play with a friend, Moses went downstairs to the basement, and I started putting away dirty dishes and mentally figuring out what needed to get done this evening.

I heard Moses coming up the stairs carrying something that was banging around. When he got to the top and walked past where I was standing in the kitchen, I noticed it was the little case that holds Josie’s tea set. Usually he’ll just bring up one or two cups and the teapot, and he’ll fill up the teapot with water and then pour it into the cups.

He’s been doing this for a couple of months, and his process is pretty cute: He walks around to the back of the sink to turn on the water because he can reach the handle from there without a step. Then he goes back around to the front of the sink where he has a step set up and he fills up the teapot. Then he walks around again to the back of the sink to turn the water off. (Yes, I realize he’s wasting water, and for these purposes, I’m totally okay with that.)

So I really didn’t think much of him bringing up the entire case, nor when I heard the water being turned on and off. At this point I had gone into my bedroom to change clothes and sit on my bed to scroll through Instagram for a minute (or 5).

The next thing I knew, Moses came into the room saying, “It’s ready!” He walked over, grabbed my hand, and led me out of the room. I asked him, “What’s ready? The water?” He nodded and said, “Uh huh.” He took me into the dining room where I saw that he had not just poured water for the two of us, he had put a cup at each chair and had poured water in all of them.

Our real-life dining room table. Almost always full of clutter and never Insta-ready, and tonight perfectly set with eight teacups full of water.

He was so proud of himself as he pulled out a chair and patted it for me to sit down. He was so annoyed with me as I took a picture to capture this sweet result of his thoughtful brain.

I took a drink of the delicious water he had poured, and then he took the cup from me and finished the rest.

Then he walked away, satisfied with his work and that I had enjoyed it, and came back with his Kindle to let me know he was done with me.

I thought my heart would burst thinking about the thought he put into this endeavor.

And I couldn’t help but to think about the doctors who told parents to send their babies with Down syndrome to institutions where they would be kept “comfortable” as they would never be able to live a quality life according to their standards. Or the parents that listened and missed out on knowing the beautiful human that was gifted to them.

I can’t help but to think of the doctors even today that find no value in a baby with the wrong number of chromosomes. Or the parents who take the advice of those doctors, and even friends and family members, and abort a baby that could have Down syndrome and hope for a “normal” baby next time.

My heart hurts for those perfect babies and children that never got a chance to show exactly how amazing they were and just what they really were capable of doing. Who never got a chance to let their light shine. I hate it for the parents who missed out on the perfect tea party because of misconceptions and stereotypes that still plague people with Down syndrome.

As I walked around the table wiping up the spilled water around the cups so thoughtfully placed at each seat, I couldn’t wipe the smile off my face because here is a little boy that not too long ago would’ve been assumed to be able to do little more that breathe on his own, planning and setting up a tea party anyone would be lucky to get to join.

The Magic of Acceptance and Inclusion

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A few weeks ago, my parents gave my brother, sister, me, and our families the gift of a Disney cruise to Alaska. There were so many amazing things about the entire trip – especially getting to have our entire family together for a week. However, there was one experience that stood out for me and I will never forget it.

On the third day of the cruise, the ship docked in Skagway, Alaska. We spent the morning driving up into the mountains and enjoying seeing the beauty of the mountains, lakes, and waterfalls that surrounded us. And by we I mean Tyson and me. Josie and Moses were bored to tears.

That afternoon, Tyson and Josie went ziplining so I took Moses back to the ship. We went up to the pool deck where there was a place for him to get some chicken strips and for me to get an adult beverage.

While we were sitting at our table, one of the ship’s lifeguards walked by. He saw Moses and said, “Hey buddy! How are you?”

After a morning of sitting in a vehicle bored out of his mind, Moses wasn’t in the best of moods, so he responded with a very firm, “No.”

Undeterred, the lifeguard continued to try to talk to Moses and get him to engage with him. Also undeterred, Moses refused his efforts.

The lifeguard said, “What’s your name?” (Side note – That he asked Moses directly what his name was instead of asking me earned this guy a gold star in my book. He did not assume that Moses couldn’t or wouldn’t answer him. It was awesome.)

When Moses didn’t answer him, I said, “This is Moses. He’s had a long morning and is obviously pretty cranky.”

The lifeguard laughed and said, “Give me 10 minutes and I’ll win him over.”

Well, it had already been at least 3 minutes, so I figured if this guy wanted to be rejected for another 7, that was his choice.

He gave it a good effort for a few more minutes and then said, “Okay. I’ll leave you alone now, Moses.”

As he started to walk away, I said, “Moses, do you want to tell him ‘bye’?” At that, Moses turned and gave the lifeguard a big wave and “Bye!”

A smile lit up the lifeguard’s face and he said, “Yes! I knew I could do it!” He came back over and asked for a high-five and a fist bump, both of which Moses gladly gave him.

Four days later, we were at sea on our way back to Vancouver. Josie had been waiting all week to go down the big waterslide on the ship, so she got her swimsuit on and went up the stairs to the top of the ship and where the waterslide started. There was a monitor on the deck where we could see when it was her turn so we could be ready to watch her as she came down the slide. Tyson and Moses missed her first run, but they were there for the second. When we saw that she was next, Tyson took Moses over to where he could watch her come down.

When she did, we all clapped and cheered for her. The lifeguard on duty turned and said, “Moses! Hey buddy! Do you want to do it?”

I’ll be honest, I had totally forgotten about the lifeguard and his encounter with Moses 4 days before. But he hadn’t. He even remembered his name.

Moses answered with a big nod of his head and a clear “Yes!”

Tyson and I looked at each other. Moses loves to slide. And he’s gone down some pretty big ones. But none as big and as long as this one and a waterslide at that.

I asked Moses, “You want to go down the waterslide?”

He again said, “Yes!”

Tyson looked at the lifeguard and asked, “Can he go down it? Is he old enough?”

The lifeguard said, “Sure he can go down it! It doesn’t matter the age. He just has to be 36″ tall, which he is, so he can do it.”

So I ran down to our room, grabbed Moses’ swimsuit, and made my way back up to the 9th deck as quickly as possible. Tyson got Moses changed into his swimsuit and then took him over to where the lifeguard was standing. He told him that he could walk up to the top with him or he could go with Josie, who was standing right there waiting. He said, “Either way, I’ll be right here when he comes down to help him if he needs it. He’ll be fine.”

With that, Josie took Moses’ hand and led the way up the stairs to the top of the slide. Tyson and I stood watching the monitor anxiously waiting to see the top of Moses’ head. A couple of minutes later, there he was, impatiently waiting his turn with Josie doing her best to keep him in line.

When it was finally his turn, he stepped over the lip of the slide entrance, sat down, and pushed himself forward. No hesitation. No fear.

When he came sliding down into view, he was backwards and on his belly. He hit the water at the end, sat up, and was met with cheers from my parents, my sister, Tyson, me, and the lifeguard. Just as he promised, the lifeguard was right there waiting for Moses. He clapped for Moses, gave him two big thumbs up, and high-fived him as he walked to the end. As Moses got out, the first thing he did was say, “Again!”

Sliding down to his own personal cheering section.
Hi-five from the most amazing lifeguard ever.

I lost count of how many times Moses went down the waterslide that afternoon.

If it hadn’t been for that lifeguard, I don’t know that Moses would have gone down that waterslide. It wouldn’t have been because he didn’t want to or because he couldn’t. It would’ve been because Tyson and I would have been too nervous to let him do it. That waterslide was really big and there wasn’t the option of one of us going down with him.

Some people may be thinking, “That’s the magic of Disney.”

I disagree.

This moment was brought to us by the magic of an individual practicing acceptance and inclusion. The magic of looking past stereotypes and focusing on abilities instead of limitations. The magic of seeing a person for who he is rather than his diagnosis.

There is no doubt in my mind that God made sure that our paths crossed with that lifeguard. He knew that some of us, including myself, needed the reminder that it’s not up to us to decide what Moses is or is not capable of. Moses can do that just fine on his own.

Us or Them

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I wonder if other parents of kids with developmental disabilities ever feel the way I felt tonight. 

Moses’ IEP meeting is coming up to determine his placement going into kindergarten. I’ve already advocated for him to be able to go to summer school (or at least give it a try), and I’ve been laying the groundwork for him to be in the general education classroom as much as possible for months now. There’s so much evidence in support of the benefits of inclusion in education – academically and socially for both kids with and without disabilities – that I feel like there’s no reason for him to ever not be in the general education classroom. 

And yet I know that the biggest barrier that we will face in achieving that is the mindset that because children with disabilities don’t always learn at the same pace and/or in the same way, then they should learn in a separate setting. It’s touted as being what’s best for them, although I haven’t been able to find any research to support that claim. 

Anyone who knows Moses knows that he has the ability to light up a room. He has a beautiful, playful personality and is the most determined little boy I have ever met. His brain is a sponge soaking up all the things that are going to help him lead his best, most successful life. He has so many gifts that he brings to this world and it seems like he’s wanted. For the most part.

Until it comes to education. Then it’s like he’s already been weighed and measured and has been found wanting based on his medical diagnosis and evaluation results. 

Nevermind that he has been absolutely thriving in his general education early childhood classroom. But yet now that he’s going into kindergarten, it’s being doubted that he can continue to do that. 

I think the hardest part for me is when I feel like he’s being doubted by people who know him and/or are in education and are supposed to support inclusion rather than integration or segregation. It’s hard when I feel like I have to advocate for inclusion with people who know Moses and how amazing he is, and yet I still find myself having to explain the value of him being in the general education classroom 100% of the time. 

Why do I have to explain that he can and wants to learn? Why do I have to explain that he can and wants to have friends? Why do I have to explain that he can and wants to be part of the classroom community? 

Why do I have to explain that as soon as he’s not allowed to be a part of the community that is built in the classroom within the 7 hours that they’re there from the first day of school until the last day of school, everything will change for him. He will at that moment go from being “one of us” to “one of them”. 

Tonight as I was laughing with Moses and just soaking up the joy he can exude, I suddenly had the thought, “Why do I want to share him with others so badly, especially when it comes to school? Why not just keep him all to myself?”

Part of me wants to say, “Fine. I’ll keep him to myself. I’ll teach him and explore with him and laugh with him. I’ll be the one to challenge him and encourage him and watch him experience success. I’ll be the one to help him realize how much he’s truly capable of in this life.”

But the other part of me knows that that is my exhaustion, frustration, and hurt talking. Advocating for inclusion is hard work and I’m learning that you don’t get to take breaks. Keeping him to myself might be easier, but it wouldn’t be fair to him or the people who would be missing out on getting to know him and to learn from him. 

Because the real kicker in all of this is that Moses has more to teach all of us than we could ever hope to teach him.

Which then begs the bigger question: Who would benefit more from inclusive classrooms? Us or them?

Stay Out of the Way

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While we were at the playground this evening, Moses went over to a fairly tall, steep climbing wall. As he put his foot on the first step, I thought to myself, “I don’t think he can climb this.” Instead of going over to help him, though, I just stayed back out of the way and kept my mouth shut.

He went to step up on the second step, and then stopped and got off the wall. He ran back towards the slide he had been going down, but instead of stopping, he ran past it.

He ran to a shorter, less steep climbing wall on a different structure. And climbed right up it. It took him a little extra effort to pull himself up and over the top, but he did it.

So tonight’s parenting lesson brought to me by Moses was to stay out of the way. My job as his mom is not to decide what he is or is not able to do. My job is to give him the opportunity to try and support him in his efforts. If he needs help, he’ll ask for it. More often than not, however, he doesn’t need my help.

How many times do we as parents get in the way of our kids showing us, and themselves, what they can do because we decide for them whether or not they can do something? Or decide that they need help because they’re not doing it quickly or easily enough, or because it’s not the “right” (i.e. our) way?

Our kids are capable of amazing things. And they’ll be happy to show us if we’ll just stay out of their way.

Stop Saying “Special Needs”

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“Special needs”

Hearing that phrase is like hearing nails drag across a chalkboard. (Does anyone even remember what a chalkboard is and that torturous sound?)

As Moses gets older, I understand more and more why individuals with disabilities and parents/caregivers of individuals with disabilities do not want that phrase to be used to describe them. 

I saw this video a couple of years ago at an event for moms of kids with Down syndrome:

At that point in my journey, I remember thinking something along the lines of, “Huh. I never thought about it like that.” And then I didn’t give it a lot more thought. 

Now that we’re starting to have conversations about Moses going into Kindergarten and are faced with the reality that the amount of time he gets to spend in the general education classroom is going to potentially be impacted by his “special needs”, I’m definitely giving it more thought.  

“Special needs” implies that his needs are so vastly different or complicated that they justify excluding him from the mainstream environment under the guise of “supporting” or “accommodating” him. 

What are his “special needs”?

Well, he’ll need to go to a speech therapist. Which other kids in his class will likely also need to do. 

He’ll likely need more redirection to stay on task during lessons and assignments. Which other kids in his class will also need. 

He’ll probably need help opening his milk carton at lunch. Which probably about half of the other kids in his class will need help with, too. 

He’ll need help tying his shoes if they come untied. Which, you guessed it! Most of the other kids in his class will need help with that, too. 

He’ll need love and patience and understanding from his teacher. Wait. So will every single one of his classmates. 

He’ll need opportunities to learn and practice social skills that will help him develop positive relationships with his peers. 

The majority of what Moses will need to be successful in the classroom are no different than most, if not all, of the other kids that will be in Kindergarten with him. Will he likely need some additional supports? Yes. But not to the extent that he’s out of the general education classroom more than he’s in it.

Some of you may be thinking to yourself, “But really what’s the big deal of saying ‘special needs’? It’s not offensive, right?”

No, it’s not necessarily offensive like the r-word is.

But it is a problem because it puts limitations on what individuals with disabilities have access to. It’s a problem because it implies that kids, or even adults, with a disability – say, Down syndrome – have needs that are so different or complicated that they should be kept separated from those with “normal” needs. 

The use of the term “special needs” tricks parents, teachers, administrators, and society into thinking that because of having a different level of ability and having to do some things differently or with support, it means that those kids aren’t able to be in the same classrooms as typically developing students. That they need to sit at a different table. That the bar for achievement should be set lower, if it’s even set at all. 

Moses doesn’t have special needs. 

He has the same human needs as every other human being on this planet. 

Again, yes, there are some areas, such as speech, that he needs extra support. Yes, there are some things that will take him longer to learn than others. 

However, none of those things are grounds for him to ever not have a seat in the classroom or at the table. He has so much to contribute to this world that I’ll be damned if I’m going to let the misconception that he has “special needs” ever be grounds for him being denied access to the spaces he has the right to occupy. 

When we stop using the phrase “special needs”, we are less likely to see people with disabilities as almost fundamentally different as human beings in some way. We will be less likely to use it as an excuse to exclude people with disabilities from spaces they have the right to occupy. We will stop faulting those with disabilities for not being “normal”. 

Perhaps those of us who are “normal” could do a better job of remembering that we have the ability and responsibility to respect that literally everyone is different in their own way and deserves to have their human needs met without question. Perhaps when we do that, the needs of those individuals with disabilities won’t seem that different at all. 

Show Mo Love

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A couple of months ago, I was listening to an episode of Brené Brown’s podcast Unlocking Us titled “The Body is Not an Apology” . I was listening to it because it was about Sonya Renee Taylor’s concept of radical self-love, and I was hoping to find some more direction on how to keep improving my own body image (something I’ve been working on for decades). 

I was getting some good ideas and insight for myself, and then Brené and Sonya started talking about frozen chicken pot pies. And then the next thing I knew is that I was listening to Sonya explain to Brené, “I don’t want to be accepted. I want to be loved.”

At that moment, all I could think about was Moses. 

I don’t want Moses to be accepted. I want him to be loved. 

I don’t want Down syndrome to be accepted. I want it to be loved.

Don’t get me wrong…Moses is so loved by the people who know him. He radiates a certain combination of joy and mischievous and genuineness that is hard for people not to be drawn to and love. 

I feel like the challenge going forward is for this love to continue to grow and for it to spread so that as he gets older, he’s not just loved but also included in a way that isn’t out of obligation or pity.

So how is this type of love for Down syndrome going to be achieved? 

I feel like that’s where another thing that Sonya Renee Taylor talked about later on in the podcast comes in. She said that one of the steps in achieving radical self-love is to make peace with difference. When I heard that, I remember thinking, “Yes. Moses is different because he has Down syndrome. And that is not a bad thing.” 

However, in our society, difference is so often seen and labeled as bad. 

How else can it be explained that in the United States, an estimated 67% of babies with Down syndrome are aborted each year. Sadly, that number is even higher in other parts of the world. There are countless accounts of parents being encouraged by their doctors to terminate a pregnancy simply because early genetic testing indicates the baby has the presence of an extra chromosome.

Why? Because that difference in the chromosomal makeup of that little human being is bad. The differences it may cause medically, physically, cognitively are bad. 

That’s the message that is being sent the moment genetic testing indicates that a baby has Down syndrome and the doctor suggests abortion and hopefully the next baby will be “normal”. 

That’s the message that’s being conveyed when a person responds with “I’m sorry” to a pregnant mother who has just shared that the baby she’s carrying has (or likely has) Down syndrome. 

That’s the message that is being passed on when a mother encourages her own daughter who is in her 30s to not have another baby because it may have Down syndrome. 

Yes, a child born with any of the three types of Down syndrome will have differences about him or her, there is no doubt about that. 

But when I was pregnant with Moses, even before I knew he had Down syndrome, I knew that the baby I was carrying was going to be different from Josie. I knew that because every baby is different. Every child develops differently. Every child will grow at his or her own pace regardless of the timeline its parents set before it. Every child will grow to have different strengths and challenges. 

For example, Moses is hands down a stronger problem solver than Josie was at his age or ever in her life. When something is hard for her, her first inclination is to quit or get someone to do it for her. Moses, on the other hand, will patiently keep working to achieve whatever it is that he’s set his mind to at the moment. Does that make him good and her bad? Of course not. Their brains are wired differently in this regard and that’s okay. I’m at peace with that. 

What I believe needs to happen is for the rest of the world to be at peace with the fact that people with Down syndrome are different in some ways and just stop there. No assigning “good” or “bad” to those differences. Just be at peace that the differences that come with that extra copy of the 21st chromosome are just part of who they are. 

I want his general education Kindergarten teacher next year to love having him in the classroom. I want him or her to see the value of having him as part of that class regardless of if he’s able to learn the academic content at the same rate as most of his peers. I want him to be sitting in the middle of his classmates at lunch in the cafeteria and them including him in their interactions even if he might not be able to talk as clearly as they can. I want him to be invited to birthday parties and playdates because his presence is desired and appreciated by the other kids. 

And then in 25 years, I want for one of the women who was once a little girl in Moses’ kindergarten class to become an OB-GYN. And when she delivers the news to an expectant mother that genetic testing indicates her baby has Down syndrome, I want her to do so with a smile and reassurance that the baby is going to be amazing and wonderful, and that she will ensure that both the mother and baby get all of the best medical care and attention they need. 

I want for one of the men from Moses’ kindergarten class to hold his newborn baby that the doctor says has markers consistent with Down syndrome and be at peace knowing that his kid is going to be amazing and wonderful when the chromosomal test results confirm there is an extra copy of the 21st chromosome. 

I want for one of the kids from Moses’s kindergarten class to become a teacher and when a student walks in with those beautiful physical features of a child with Down syndrome, an automatic and genuine smile appears because that teacher knows this is going to be an amazing year in that classroom. 

I want for one of those kids from Moses’ kindergarten class to one day have a child in kindergarten who comes home and says, “There’s a student in my class who has Down syndrome.” And that parent will smile and be excited that their child is going to have the amazing experience of getting to know, learn with, and learn from a child that brings a little something extra to the classroom.

I want the world to be at peace with the differences that Down syndrome brings because it is in those differences that so much beauty and joy and most importantly, love, is found. 

This is the kind of radical love I want the world to have for Moses and all those with Down syndrome.

“‘Acceptance’ is an innate word. It is an inert word, it does not do anything, it stops there…it just lays there. I accept that. There’s nothing, literally. There’s nothing… It is a passive term. “Love” is an active term, it is a thing that makes you get up and do something, to change something, to shift. It creates its own momentum. I want for the world a love that changes shit, that’s what I want. I want us to love in a way that disrupts…Acceptance won’t get us there.”

-Sonya Renee Taylor

That Boy

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Tonight at Josie’s soccer games, Moses decided he wanted to join a group of kids playing behind where we were sitting. Usually when we’re at her games, he wants to either play on the playground or watch Masha and the Bear or Peppa Pig on my phone.

This evening, however, he went over to where some kids were kicking some soccer balls around and tried to play with them. When they moved over to the empty soccer field next to where Josie was playing, he went with them. I stood in the middle so I could keep an eye on him and keep cheering her on.

When I took the picture of Moses in the middle of this group of kids, it was because I wanted to capture the moment of him just being a little boy playing with other kids. It was a beautiful scene to watch and I had a beautiful feeling in my heart from getting to watch my son running around like this, smiling and laughing with these other kids.

Moses, in the gray jacket, trying to play with the other kids.

For a lot of parents of kids with a disability, there is often a feeling of apprehension in situations like these. Are the other kids going to see my son as just another little boy wanting to play and include him? Or are they going to figure out that he’s ever so different and it’s enough to cause them to move away from him or even tell him he can’t play?

For a moment it seemed like he was being accepted and included.

And then the moment ended.

Just a moment or two after I took the picture, I started to realize that a couple of the older girls were getting annoyed with Moses. That really didn’t bother me because he was getting in their way in his attempt to play with them.

It was when he started trying to play with one of the little boys that looked to be around 1 1/2 – 2 years old that it was apparent that the moment was over and Moses’ presence was no longer going to be tolerated.

Here’s the thing – Moses loves babies and little kids. He does his best to be gentle, but he does still tend to cross some boundary lines when he wants to hug them and just love them. He has gotten so much better, but I don’t know that he’ll ever be able to resist the urge to at least give them a little pat.

It appeared that the little boy Moses was trying to play with was related to one of the older girls, and she felt like Moses was a threat to him. She came over to try to shield him from Moses. And Moses being Moses, he just tried to do a group hug.

I totally get being protective of a younger sibling or cousin or friend.

It was the way I heard her call Moses “that boy” to her friend that crushed my heart.

Again, I’ll admit that Moses crossed the personal boundary line when he got as physically close to the other little boy as possible with as much gentleness as he could muster.

The tone she used when she said “that boy” indicated he was bad.

Different.

Unwelcome.

As I walked over to remind Moses to be gentle, I also had it in my mind to try to introduce him to the other kids and be more actively present while they played.

But when I heard the way he was called “that boy” in that way, I choked back my tears, reminded him to be gentle, and then asked him if he wanted to go get his Kindle out of the van. He immediately said “Yes!” and began to walk with me away from the kids, completely unaware of what just happened.

This is one of the heartbreaking realities of having a child that is different.

Josie’s first game ended, and we moved to a different field for the next game. He sat in his chair for a little bit playing on his Kindle, and then he got up and wanted to run around.

As we were walking around the field, we saw a girl that I know but Moses had never met, and she had never really met Moses.

For the next forty minutes, she played with him. They played Ring Around the Rosy at least 1,000 times. He chased after her and she chased after him. They kicked a soccer ball around and then sat down to roll it back and forth. At one point, they were sitting on the ground pretending to be butterflies.

Rolling the soccer ball after taking a break from Ring Around the Rosy.

As I joined them for a few rounds of Ring Around the Rosy, I felt tears again when I looked at not only the huge smile on his face but also the genuine smile the girl gave him as she looked at him.

Yes, there are going to be those situations where the other kids are going to decide Moses is just too different, too “that boy”  for their liking.

There are also going to be those situations where the other kids see that boy, my boy, accept him for who he is, and include him in their play.

I am so thankful that on the same night that I had one of my greatest hopes for Moses crushed by one of my greatest fears for him, I had my hope restored by this girl who showed me that there really is reason for me to hope that Moses will find acceptance and inclusion in this world.

Refusing to Stay Silent

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This morning while at the doctor’s office for my yearly checkup, I was enjoying the conversation of my nurse and we got to laughing about different things, and then somehow the conversation took a turn for the worse and somehow led to her saying something along the lines of “People get offended by anything these days.” 

In my mind, I was disappointed that the conversation took that turn because I don’t believe it has anything to do with “these days”. I believe that people are actually getting offended by the same thing that has been offending people for decades, if even centuries. The difference is that now people are not willing to let the offensive words, pictures, or remarks slide. People are not willing to be silenced by the accusation or fear of being accused that they are “too sensitive”. People are not willing to continue to be offended by others simply because they personally do not see the offense.  

But what really had my mind spinning was after she said something about a current topic people are finding offense with. She followed her commentary up with, “It’s so retarded.” 

My first thought was, “No, she didn’t.”

But she did. And as I sat there half-listening as she continued to talk, my mind was racing trying to decide if and how I should address her use of the r-word:

“She just said that people these days are too easily offended, and did I want to be one of those people, did I?”

“Should I even still bother saying something? She’s talking about something else now.” 

“WHY DIDN’T YOU JUST SAY SOMETHING???” 

“I have to say something, but at this point, how?” 

“I don’t want to upset her or make her uncomfortable, but her words upset me and I’m uncomfortable that she used them. Is her comfort more of a priority of my own? Of my son’s and others with developmental and intellectual disabilities? Of their parents?” 

“She’s been so nice. Do I really want to call her out on this?”

When she moved to take my blood pressure and there was a brief pause, I said to her as calmly and respectfully as possible, “You know when you said something about people being offended so easily? Well, then you used the word ‘retarded’ and that actually does offend me because my son has Down syndrome.”

As was illustrated for me today, I know that there are people who continue to use the word retarded despite knowing it’s offensive. Much like the n-word. I would say that perhaps they continue to freely speak it because they haven’t heard that it’s offensive and believe it’s still an appropriate adjective to use in describing something, but I just have a really hard time believing that. (Unless they’re like 100-years-old, then maybe. Otherwise, no.)

I also know that there are a lot of people who recognize and agree that using the word ‘retarded’ is offensive and shouldn’t be used. These are the people who have likely erased it from their vocabulary. I would also venture to guess that a lot of these people cringe when they hear someone else say it and do exactly what I’ve done so many times in the past:

Nothing. Keep your mouth shut. Silently congratulate yourself for not using that word.

I get it. Addressing the use of an offensive slur can be hard and uncomfortable no matter if it’s a loved one or a stranger. There’s a chance that you could find yourself on the receiving end of some more offensive language when you’ve done nothing to deserve it. There’s a chance that you could be ridiculed or even ostracized. There’s a chance you could jeopardize a relationship.

However, not addressing it is giving your silent approval. Yes, in some cases, silence can speak volumes in letting someone know you have been wronged. However, in a situation like this, silence is the equivalent of saying,”Hey, you used the r-word and I find that really offensive, and a lot of other people do, too, but it’s okay if you want to keep saying it.” 

Silence is complicity.

– Albert Einstein

I have to admit that one of the reasons I was able to speak up today is because I’ve been mentally preparing myself since the last time I didn’t speak up. I’ve literally been practicing different ways to respond in my head for a couple of years now because I refuse to stay silent about it ever again.

How can you prepare yourself for speaking up and calling someone in when they have said or done something offensive?

  • Commit to speaking up the very next time it happens.
  • Practice some things you could say: “Don’t you think it’s time to find a new word?”; “You know, that’s a really offensive word to a lot of people and I don’t think you’re wanting to offend anyone, right?”; “Using that word makes you sound really insensitive/uneducated.”
  • Show a picture of Moses or another person with Down syndrome or intellectual disability and ask, “Would you say that to this person’s face? If not, you might want to consider saying it at all.”
  • Have an exit plan. Be ready to say that you’re not comfortable being in a conversation with someone that uses that word and excuse yourself from the conversation.

In the end, you have to just rip the bandaid off and say or do something. A wise person recently reminded me that how the person or people respond to you standing up for an issue is not your concern. You have no control over whether or not she will listen respectfully or fly off the handle. And whatever her response is really isn’t about you, anyway. It’s about her. Her values, her respect of others, her willingness to listen to understand, or a lack thereof. 

I have to give the woman today props for her response today. Did she apologize? No, she didn’t. She also didn’t shut down or get defensive. She was a quiet for a moment while she finished taking my blood pressure, and then our conversation resumed. She even asked me if I knew Moses had Down syndrome before he was born, and I was more than happy to answer her question.

As I left there today, I like to think that she’s going to reflect on our conversation today and reconsider her use of the r-word. She might, and she might not. What I know for certain is that I left there today having advocated for my son and others who are not always able to speak up for themselves. And I have to say, refusing to keep my mouth shut feels really, really right.