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?
“Mom, these shorts are too big on me because I’m so thin.”
“Mom, her stomach is round and mine is flat.”
When my then 6-year-old daughter said these things, I mentally went into full-fledged panic mode.
On the inside, I was simultaneously screaming and crying at the thought that my young daughter was already falling to the emphasis our society and culture places on thinness while searching for the “right” way to respond to her comments.
I don’t remember when I learned that skinny was “good”. I think it’s a message that has been embedded in my culture for so long that it was just known. Kind of like how no one had to tell me that the sky was blue. I just knew. In grade school, I can remember looking at my best friend and seeing how skinny she was and feeling huge next to her. I can remember walking with a woman in my neighborhood when I was in 4th grade to try to lose weight so that I wouldn’t grow out of one of my favorite outfits. I can remember telling my mom that I didn’t want to go to Dairy Queen for ice cream because I didn’t want the extra calories when I was maybe 11 or 12.
Long story short, I battled through severe anorexia for about a year when I was a freshman in high school. The day that the scale showed I had gotten back under 100 pounds was exhilarating. The turning point for me was when I was standing with a young woman that was clearly bigger than me but she was the one getting compliments on how great she looked, I realized that the level of thinness I had achieved was not “pretty thin” and I did begin to eat more and gain some weight back. It was a very difficult, mentally painful process to see the numbers on the scale and the size of my clothes going back up. When I got to 110 pounds, it was my daily goal to keep it there. For the rest of my high school career, two things mattered the most to me: my grades and my weight. And I was only accepting A’s and 110 pounds, respectfully.
After high school, things got slightly better but not much. I still spent so much of my energy and focus on my weight, which I had allowed to go up to 120 pounds. It was part of my identity by then. I didn’t know how to live without my weight and size at the forefront of my thoughts. And it was completely normal. It was reinforced every day without me even having to look for it.
It wasn’t until I was pregnant with Josie that I ever went through an extended period of time where I honestly felt good about my body. Go figure it happened when I also hit my heaviest weight ever. However, that body positivity only lasted a short while because right after she was born, I felt that I needed to get back to my pre-pregnancy weight stat. And the well-intentioned comments about how I was losing the baby weight so quickly spurred me right along. The same thing happened when I was pregnant with Moses.
For so long, eating and exercising were not about health for me. It was all about trying to achieve that “perfect” body. The one that wasn’t too big or too small. The one that shape-hugging clothes looked good on. The one that elicited “positive” comments about how I looked. And all of this was encouraged by the world around me: commercials, magazines, movies, friends, etc. The message was clear: The size and shape of your body mattered. And the size and shape that mattered was small and thin. And I bought into that message hook-line-and-sinker for far too long.
In my experience, making critical statements about the size of our butt, belly, boobs, and thighs comes as naturally to women as breathing. There’s always at least 5 more pounds to lose. Food is both a friend and an enemy and the line that separates the two is thin (no pun intended). Exercise is about flat stomachs and thigh gaps and being swimsuit ready more than cardiovascular health and cholesterol levels.
I hate it. I hate the toll that it has taken on me for more than half my life, both physically and mentally. I hate the amount of time and energy I spent on making sure my weight fell at the low end of the “ideal” range for my height. I hate the tears I shed over not being able to fit into a smaller size of jeans or that I still didn’t have a perfectly flat stomach.
A couple of summers ago, I read an article featuring several women that had very positive body images. As I read the stories of these women who lovingly embraced their bodies, I had two different thoughts running through my mind. The first one was, “I wish I could have that kind of mindset about my body.” The second thought that closely followed the first was, “But do they really love their bodies the way they’re saying they do? Because I just don’t know how that’s possible.”
It struck me as very sad that I would question the genuineness of these women who, to me, were anomalies because they were able to not just look at themselves in the mirror but have themselves photographed showing more skin than clothing and be happy with their bodies. There was no mention of needing to lose weight, apologizing for or explaining where their “imperfections” came from, what foods they avoid eating, how many calories or points they’re allowed to consume each day. There was just love and appreciation for their bodies.
Even though I kinda thought they were lying, deep down I wanted to be like those women. I wanted to look in the mirror and not immediately examine my reflections for the flaws that were undoubtedly there. I wanted to be able to appreciate my body for being healthy and physically able to do pretty much anything I needed it to do. I wanted to be able to sit around with my girlfriends and not get caught up in nitpicking certain areas of my body that weren’t quite up-to-par or complaining that the delicious food I was enjoying would “go straight to my hips”.
How could I do that?
Also, how do I change the narrative for my daughter? How do I protect her against following the same storyline about body image I and countless women and men before me followed?
Because I am one of my children’s primary teachers, a lot of the change has to start with me. So in our house, my kids will never hear me criticize my body. My kids will never hear me speak the word “diet” to mean anything but the foods we put into our body. I make a very concerted effort to not refer to any foods as “good” or “bad”. I do point out which foods help our bodies to be strong and healthy and have the energy to do our work throughout the day. I have not and I will not ever celebrate or criticize the shape of either of my kids’ bodies. Food, weight, and body shape are not a focus in our house.
What I want to beg other people to do is to quit doing what I spent more than half of my life doing. Quit criticizing and shaming your body. Quit criticizing and shaming other people’s bodies. Our young kids are listening and watching and learning from all of us. My daughter hears you when you comment on how much weight someone has lost or how much weight you’re wanting to lose. She hears you talking about counting calories and macros and drinking the magic drink that’s going to help you go down two dress sizes. She sees you eating a salad and hears you talk about how it’s not what you really want to be eating but are doing it anyway for the sake of losing weight. She sees the judgmental, critical looks when someone who is overweight walks by, and she hears the comments that are spoken aloud. She notices that when you look at a picture of yourself you look at how your body looks before (or if) you notice how big your smile is and how happy you are to be where you’re at and who you’re with. And there will come a day when Moses will hear and understand all of these things, too.
Use your words and energy to build yourselves and others up by focusing on the attributes that truly matter and will make this world a better place.
On the mirror in my bathroom is a sticky note that says “My body is a temple of the Holy Spirit. I will honor God by caring for my body. I will give thanks to God for this body He has given me to do His work.”
Believe it or not, reading and repeating that every day, appreciating my body for what it is able to do, fueling my body with foods that I enjoy and help me to be strong and healthy, and cutting out all negative-talk about my body has resulted in a new narrative for myself. One that has helped me finally find myself with the best physical and mental health of my life. A storyline that I never thought was possible for me.
My hope is that this will be the narrative my daughter and my son will adopt for themselves.
My hope is that you will, too, if you haven’t already. Because together we can change the narrative around body image for the future.
A couple of weeks ago, I wrote about how I would love for people to stop using the term “special needs” when referring to Moses or other people with a disability. The next week, a couple of my friends at work asked me what I would rather people say if not “special needs”.
Their question took me by surprise, but I was even more excited that after they read my post, they didn’t just dismiss my thoughts. It got them thinking and they were genuinely curious about what to say instead. (Yay!)
I realize that I left that last post unfinished because I did fail to offer an alternative for saying “special needs”.
So what would I prefer you say when referring to Moses having Down syndrome or a disability?
Exactly those words.
‘Down syndrome’ and ‘disability’ are not bad words. They don’t mean bad things. They aren’t wrong to say in any way, shape, or form. So to not say them and try to sugarcoat what he has with something that sounds “nicer”, such as “special needs”, there is the implication that the other words are somehow bad or wrong.
That a disability is a bad thing.
That it’s bad to have Down syndrome.
That there’s something wrong with the person as a human being.
The implication may be subtle and seemingly harmless; however, the impact can be quite significant to those with Down syndrome or another disability.
Do I think that my son is special?
Absolutely.
Moses is special because he is fearfully and wonderfully made exactly the way he’s supposed to be. (Just like you are.)
HE is special, not his needs.
I understand it might be hard to get out of the habit of saying “special needs”. It might seem like an inconvenience that isn’t really that big of a deal and not worth the effort.
However, it is a big deal to those that fight against the stereotypes and challenges that come with being labeled “special needs”. It’s a big deal to the parents of children with disabilities that want nothing more than for their kids to be valued and accepted for exactly who they are. Please believe me that your effort is very much appreciated and does not go unnoticed.
So if it’s relevant to the conversation to include the fact that a person has a disability, then just say “disability” or the specific name for it, such as “Down syndrome”. You don’t have to whisper the words or look around to make sure no one outside of your intended audience heard them. I pinky-promise you that they are not bad or hurtful words in any way, shape, or form.
All the Ups and Downs 