Today we had Moses’ annual IEP meeting. That in and of itself was not too remarkable. What was remarkable to me was that I forgot about it. Last night when Tyson said something about it, I had no idea. I knew it was coming up this month, but I thought it was maybe next week. 🤷♀️
In the past few years, I knew exactly when his IEP meetings were because I was a ball of anxiety the week leading up to it. There were so many questions and uncertainties that I would be texting people the night before and day of asking for prayers. I would barely be able to sleep the night before.
Last night, his meeting wasn’t what was on my mind as I drifted off to sleep.
Before his Kindergarten IEP transition meeting, I was a ball of anxiety. I was so worried about what Kindergarten was going to be like for him, and if he was going to be given the chance to show how much he was capable of learning and doing. I can remember the woman who was going to be his Kindergarten teacher came to me and said, “I need you to trust me.”
Back then, it wasn’t necessarily that I didn’t trust her. It was that I didn’t trust the system. From my own experience of working in an elementary school, the norm was definitely not for a kid with Down syndrome to be included in the general education classroom almost all day. It was exactly the opposite. It was hard for me to trust that it could and actually would be different for my kid.
But it was. And it has been again next year.
Now, I fully trust Moses’ IEP team to work together and work with Tyson and me to make sure that Moses is included as an important part of his classroom. He is held to high standards academically and behaviorally, and he is absolutely thriving. He’s honestly doing things that I didn’t expect him to be doing in 1st grade. But then again…he always manages to show me he can do ANYTHING!
At the end of the meeting today, I did what I always do at the end of meetings about Moses….I cried. I cried tears of gratitude for the amazing people who work so hard every day to make school a place where he can pave the path for a new norm for himself and hopefully other kids with Down syndrome.
This morning as I sat on the edge of the exam bed and watched the images of Moses’ heart show up on the screen, I noticed a familiar feeling coming up in my chest and head. I thought to myself, “I’m starting to feel anxious.”
Six years ago, Moses had a device implanted to close the hole in his heart. He has an echo and ECG done every 3 years to make sure everything still looks good.
Going into this appointment, there was really no reason to think that there was anything to be concerned about. Moses is healthy and shows no signs of any issue with his heart. Still, sitting on the edge of that bed and seeing the images triggered that pesky doubt that is always there, waiting for its chance to take charge.
All too often I let it do just that, especially when it comes to Moses and his health.
But today, I paused and changed my wording. I took a deep breath and thought, “I’m starting to feel anticipation.”
Anticipation can go both ways.
That helped me to refrain from going down the rabbit hole of anxiety and imagining what possible problems and challenges we might be facing.
Instead I was able to continue watching and telling Moses what an amazing job he was doing and genuinely stay calm.
When the doctor came in before the tech had even finished the ECG and reported that the echo looked great and the ECG did, too, the joy came.
Yes, Moses has had health challenges. And some of them have been serious.
And through every one of them, God has been there. He has always brought him through it.
So it was with anticipation of God’s continued presence and goodness that I was able to stay calm today. That I was even able to feel hopeful that things were going to be okay.
Sometimes just a small change can make a big difference. Sometimes all it takes is changing one word.
For some reason I thought that parenting Moses would get easier as he got older. I thought that we would get things figured out in the early years and then just roll right along without so many bumps in the road.
I was wrong.
Here we are 7 years in, and I feel like the last year has been the hardest of them all.
Celebrating Moses’ 7tb birthday
Navigating preschool was easy. Navigating elementary school is hard, and that’s with have an amazing IEP team at his school. I hate to think what it’s like for parents who don’t have the support that we do. And this is only his second year. I felt like getting 1st grade started was harder than the whole of Kindergarten, so I’m already apprehensive about the coming years.
He’s still not talking super clearly. His speech is improving for sure, but there’s still so many times that I have to ask him to “say it again” or just nod and say “okay”. And then I feel horrible when he’s clearly frustrated that I didn’t understand him.
He’s had some weird medical things going on. Thankfully none of it has been serious, but having to make multiple trips to doctors has added another challenge to deal with.
At the end of the summer, I broke down when my husband asked me about what trip we might do next and told him that I would rather just stay home. Between having to watch him constantly because he will wander off in the blink of an eye and making sure that he’s getting to do things he enjoys and trying to figure out what exactly that is, I was mentally and emotionally exhausted even thinking about taking him to the local park let alone on a trip somewhere.
By the time school started back this August, I was crying tears of relief and guilt. Relief that I was getting to go back to work and getting a break from being a full time mom, and guilt from feeling like I needed a break from being his full time mom.
For the first time I found myself asking God, “Why me? Why did you think I was the best person to be his mom?”
One day this summer, another mom told me that it gets easier. I know it was meant to comfort me, but it didn’t. It still doesn’t. I don’t know that being Moses’ mom will ever be easy. Maybe it would be easier if I accepted “good enough” or “that’s just the way things are”. But good enough isn’t always good enough. The way things are isn’t always what’s best for him. And God didn’t make me to be one to sit by and not say anything.
So I’ll get up tomorrow morning and do my best for him again. I’ll keep advocating for him and speaking up for him and working to change what needs to be changed for him and for others with developmental disabilities. And then I’ll do it again the day after that and every day of my life. Because that’s what he deserves.
Maybe that’s why God chose me. Because he knows that I love him with every ounce of my being. And he knows that I will always fight for my son. For both of my kids.
I know that I’m not on this journey alone. Sometimes I feel like I am, so I have to remind myself that God did not put me on this path to walk it alone. I’m grateful to have my husband walking beside me through these challenging times. I’m grateful for the people who listen and try to understand what I’m going through. I’m grateful for their encouragement and support. I’m grateful for the people who are willing to make changes where they are needed.
Maybe it will get easier at some point when he’s older. Right now, it’s just hard.
I’ve hesitated to share this because I’m not looking for pity or a pat on the back. I almost didn’t share it for that reason. But then I remembered why I started writing and sharing about the ups and downs of my life in the first place…to help others know that they’re not alone. I know I’m not the only person who is going through a hard season. I’m not the only person who is struggling to find joy in the journey or keeping faith that this is part of God’s plan and His plan is always good. As always, I hope that by sharing my story, I might be able to help someone else.
My darling 8-year-old daughter drew this picture for me the other night.
Yes, that’s a picture of me, Josie’s “at times mean” mom. Based on the picture she drew of me, I was having one of my mean moments. And to be sure that the message was clear, she reiterated the “at times mean” part in the heart she drew next to my portrait.
When she gave me this masterpiece, I could tell she was a little apprehensive of what my reaction would be.
What did I do?
I laughed and agreed with her.
I am 100% okay with her describing me this way. I’m even okay with her drawing me to look like that.
Had she said I was hateful or hurtful, then that would have absolutely bothered me.
But for her to call me mean doesn’t bother me at all.
Because sometimes I am “mean”.
I love my daughter. I adore her, really. She is by far one of my very favorite humans on this planet.
And every day I am doing my best to raise her to be a kind, compassionate, responsible human.
And believe it or not, she does not always comply nor appreciate my efforts.
Not too long ago, I was at my wit’s end with her. After a particularly trying stretch of sassiness, I ended up telling her that I wasn’t going to tell her what do to anymore because she was clearly grown and did not need me to tell her what to do. I also told her that the next day she needed to go find a job and start paying me rent and for her own clothes, groceries, etc.
I’m pretty sure Tyson told her it would be in her best interest to stay away from me for the rest of the evening.
I remember sitting by myself later that evening thinking about Mary. (As in Jesus’ mom.)
First of all, did Jesus get an attitude with her? Did he question everything she told him and tell her that she was wrong? Did he give 50% effort at the tasks she gave him to do? Did he complain every single time he had to take a bath???
If so, how did she handle herself? Was she able to remain calm and patient? Did she ever raise her voice? Did she tell him not to come complaining to her when he got cold because he refused to dress appropriately for the colder weather? Did she tell him to go get a job when he was 8?
Surely Jesus did not put his mother (or father) through these trials. But if he had, how would she have reacted?
I have no doubt her reaction would be the exact opposite of mine on many, if not most, occasions. (After all, she was full of grace, and I am definitely not.) But I do like to think that I do at least one thing that she might have done. And that’s to ask God to help me. To help guide me in teaching and disciplining this headstrong, independent, too-smart-for-her-own-good daughter of mine so that she becomes the person He designed her to be and wants her to be. So that she leads a happy, fulfilling life.
I think she knows that I want nothing but the best for her. I tell her why I want her to be ready to work hard, learn from her mistakes, be kind to others, and shower regularly. Whether or not she’s listening is really the question.
Most importantly, I know that she knows that I love her. And not just because she drew not one but two hearts in her picture. But because I tell her that all the time. And I do my best to show her that all the time, too.
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.
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.
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.
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?
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.
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.”
All the Ups and Downs 