A Mom's Thoughts on the R-word

I want to talk to you today about the word retarded (the r-word going forward in this post). I am aware that most people that still use this word are not intentionally trying to degrade my son. They are simply using a word that at some point culture deemed appropriate to say in place of ridiculous, silly or stupid (which honestly we discourage the use of that word in my home too). I was not one to ever really use the word, but it wasn't until I had my son with Down syndrome that the sound of that word cut right to my heart. Usually when people defend the use of the r-word, I hear (or read) 1 of 3 things. I want to take a moment and respectfully tell you why these defenses are flawed.

1. I'm not talking about your child.
Yeah, but you are. Whether you realize it or not, mean to or not, the use of that word diminishes the worth of my child and other people with an intellectual disability. When you are confronted with something unwise, disagreeable or outlandish, and then you describe that scenario with the r-word, you are (again whether you mean to or not) calling my son unwise, disagreeable and outlandish.

Unfortunately the use of this word has permeated our culture. I truly believe most people that use it are in no way trying to hurt me or belittle my son. But hear me now... you are. When I hear that word, I cringe. My face gets hot. I think to all of the hard work my son puts in to walk, talk and learn, and how with one word you have shown what society thinks of him. I know that sounds crazy, but it's true and you have no idea the depth of that word until you love someone with a disability.

If something's unwise, say that's unwise. If something's ridiculous, say that's ridiculous. It might take some time to phase the r-word out of your vocabulary, but you can make the decision to start today.

2. It's an acceptable medical term.
Yeah, but it's not. Health organizations have halted the use of the r-word for years now opting for intellectually disabled and in 2010, Rosa's Law was passed in the United States that replaced the use of mental retardation with intellectual disability in several laws. The vote was unanimous among party lines even. School districts as well have followed this example. The National Down Syndrome Society states that they "strongly condemn the use of the word (r-word)... Using this word is hurtful and suggests that people with disabilities are not competent."

While the use of this word was perfectly acceptable decades ago, culture has evolved and turned this word into something derogatory. It's happened before. The words moron, imbecile and idiot all used to be acceptable medical terms too in the early 1900s and I think we all know how commonplace those words are now unfortunately. So, please don't think it's acceptable to call my son's disability mental retardation... it's outdated.

3. Stop being a snowflake. It's just a word.
Yeah, but it's not. I know there is a lot of political correctness going around and I know that some people roll their eyes at it. But, part of being an empathetic human being starts with listening to people and hearing their experiences. If somebody tells you something hurts them, you can't tell them it doesn't. So if I tell you as a mom of a child with a disability that the r-word stings me, it's pretty disrespectful to turn around and call me snowflake. Which whatever, call me a snowflake, I can take that. What I can't take is taking the r-word a step further and use it to actually mock my son and people like him. That's unacceptable and the movement to end its use proves that it is NOT just a word.


So in closing, I hope you learned something and I hope that if you are someone that uses the r-word that you reconsider after reading this. It's interesting because while my son works so hard to walk and talk, he doesn't have to work at all at being a loving, happy individual. Sometimes I truly wonder, who is it that has the disability?

Photo by Erin Co. Photography

Will I ever learn to say away from comment sections?

I did something dumb this morning. We've all been there. You know that place... where you have just finished reading an article and for some reason you decide to read the comments. And then there in the comment section you see how terrible people can be when they are hiding behind their computer screens.

If you don't know, there was a report that came out this week that in Iceland 100% of babies with a prenatal Down syndrome diagnosis are aborted. They are not alone. Denmark, Netherlands and other countries are close behind. In America the percentage is still high at 67%. This morning, I was reading an opinion piece further exploring this report and that encouraged more awareness be brought to the discussion so that more women choose life. I scrolled through the comments expecting outrage at Iceland and crying emojis for all the babies who never had a chance to show the world how awesome they are. Not so. Instead I was met with comments like this:

"... if it's a personal choice to knowlingly [bring a child with Down syndrome into the world], what is society's obligation? Seems that it has implications to people outside the immediate family so it really is a bigger issue. Right now, people who have disabled children get public money to be a parent. (editor's note: Really? We haven't received a single dollar since Elliot was born. That's news to me.) That is wrong if society has no say."

"A fetus has NO awareness. Bringing a severely handicapped child into the world when you knew far before to the point of viability is nothing more than selfish cruelty inflicting unimaginable suffering to salve your own conscience. You get a bad egg you throw it away and start again."

"My taxes are through the roof because my kids' schools are filled with special education teachers, or because kids are being bussed out of district to special needs schools. The cost for 'special' children is a burden on us all, especially our children and the schools... It's too much."

That's just a sampling. The more I scrolled, the more I cried. It was like a train wreck I couldn't draw my eyes away from. I was telling a friend earlier this week that I felt like ever since Elliot was born, we've been so fortunate to live in kind of a bubble. Since I stay home, he's not in daycare and the only people we really see are family and friends who have all fallen in love with Elliot. I told her I was nervous about what public school this year will bring.

And for a moment, reading these comments, all I could think was there is going to be some parent at my kids' school that will see Elliot and only think about his tax dollars and how he's not worth it because he's "suffering" anyway. My next thought was... well, I have a lot more work to do then.

My son should not be reduced to a dollar sign. He is a little boy filled with potential. He loves dinosaurs. He loves to paint. He loves to throw balls. He loves to terrorize his sister. He gives the best hugs and is the first to offer a smile. And with the loving support of his family and an inclusive education, he will become a productive member of society. Sounds pretty much just like any other kid, doesn't he? This isn't 1960, people! The outlook for people with Down syndrome has changed. Unfortunately, perceptions have not.

Elliot is not suffering. He is LOVED beyond measure. Yes, he has health concerns we have to monitor. Yes, he has therapy appointments weekly. Some weeks it's hard. But you know what? Some weeks my five-year-old daughter and her attitude are hard!

We need to ask ourselves what gives a life value? Chromosome counts? Skin color? Academic success? Athletic ability? No, a life has value because it's a life and we are all image bearers of God.

The elderly woman in the nursing home? Image bearer of God.
The immigrant trying to put food on the table? Image bearer of God.
The African-American boy walking down the street? Image bearer of God.
The little girl with almond-shaped eyes? Image bearer of God.
The prison inmate? The CEO of a major company? Your Muslim neighbor? YOU YOURSELF?
All image bearers of God and ALL worthy of the breath in their lungs!

Hitler prescribed to eliminating people with disabilities, too, you know. And the entire world rallied against him. And I will continue to rally against that thinking by sharing Elliot's life with the world. Down syndrome isn't a tragedy, but outdated information and close-minded thinking are. It hurts my heart there are people out there that view my son as a burden. It literally brought tears to my eyes today. But, at the very least, it gives further fuel to my fire to stand for life, education and opportunities for people with Down syndrome.

Daughter of the King

I was not popular in high school. I had bad teeth and a hopeless fashion sense. I was a part of a specialty choir that dressed up in Victorian frocks and sang Christmas carols around town. Don't get me wrong, I loved it, but it didn't necessarily scream "cool." My friends and I did things like race cantaloupes down driveways for a good time. I had a tremendous group of core friends that made me feel loved and safe, but in the grand scheme of high school, I was a shy, introverted honor student that lacked self-confidence.

I've come a long way since then. Not only did I fix my teeth and learn how to dress, I also found my voice as I transitioned into adulthood. I slowly realized it's OK not to follow the trends. It's OK to be artsy. It's OK to have a few really awesome, genuine friends than a lot of fake ones.

I'm bringing up this subject because my daughter Adele is starting kindergarten this year and will soon start navigating the real world. A conversation I had with a friend the other day sparked these thoughts that follow. I confided with her that despite all of my personal growth since high school, sometimes doubt can creep in. I can run into someone from high school or be met with a new challenge and suddenly, I feel like that awkward girl again. I think to myself how did I land such a super hot husband? How am I fit to serve in the way God is calling me? How can meek, little me raise three strong kids?

These thoughts are fleeting, but they grab at me. When talking with my friend, she told me she often feels the same way and she asked me, "Are you ever scared Adele will feel how you felt?"

The truth is I do especially now that's she's starting public school. I've always told myself I'd make sure she would get braces. I'd make sure she knows how to style her hair. I'd make sure to give her every opportunity to find a sport or activity she can excel in. I'd volunteer in her classroom and be on the PTO. I'd do everything I could to make her feel loved and valued. Then as I was thinking about all of this, I realized something. None of that really matters. It's all secondary to teaching her to find her value in Christ.

Christ loved me when I was a nerdy teenager and he loves me today. Christ had a plan for me then and he as a plan for me now. Christ loves Adele and that's all she needs to know as she begins to find her place in this world. Of course, I want her to find her niche, make friends and know that her parents love her, but above all of that, I want her to learn how to be a woman of God. That's where she will ultimately find her true worth... that's where all of us can since we are made in his image (Genesis 1:27). And whether she's a star gymnast, a quiet poet or a struggling student, God loves her and has a plan for her life according to his will. It is my sincere prayer Adele learns to find peace with that and finds confidence in knowing that she is a daughter of the King.

Letting Go of Anxious Thoughts

Control. Such a hard thing to release, isn't it? I feel like ever since I had Elliot, giving up control has been a central theme in my walk with Christ. I didn't even realize how much of a control freak I was to be honest. I mean, I'd let Adele use the glue bottle on her own. I'd let Justin pick the restaurant. I had a classroom full of high schoolers who changed my desktop backgrounds on the daily and I didn't freak out about it. I didn't have a control problem, right?

What I failed to see was, sure, I didn't sweat the small stuff... but the big stuff? Health, family, the future... all of that was closely guarded. The crazy part of it is, the big stuff is the hardest to control, but there I was grasping at straws. I make no secret that when Elliot was born I went into a dark place for about 24 hours and it took several more days to fully grasp what was ahead of us. I thought about the weirdest things in that time... like would parents let their kids play with him, would Justin and I enjoy our retirement years, would teenager Elliot be able to use the men's room alone if I took him shopping? I googled things like "can people with Down syndrome drive." I was so worried at first about the future instead of what was in front of me.

It took a lot of prayer and a lot of sob sessions with Justin to teach me to tackle what I can and not worry about what I can't. So at the time, our first goal was getting him out of the NICU. Then we graduated to physical, occupational and speech therapy. And with each milestone that was slow-going, God taught me that "slow-going" was just fine. And when each milestone was met... how sweet those moments have been.

So here we are... another milestone coming toward us. Elliot is about to turn three and is all set up for public school in the fall. This is one of those moments I fretted about during those first few days. What used to be listed under "I can't tackle right now" has suddenly been moved over to the "I can" column. It's exciting and intimidating at the same time. I can't wait to see how Elliot shines, because I know that's what he's going to do.

Though I have to admit, as I was preparing for his evaluations, the control freak in me crept back up again. I poured over Facebook groups, read blogs about inclusion and researched laws. I read stories about kids with Down syndrome learning how to brush their teeth at school instead of how to read. I read Facebook comments from moms whose school districts refused to try inclusion (which is illegal, by the way). I drove myself crazy researching IQ tests.

Then suddenly I realized I was developing a chip on my shoulder. I was anticipating the school district would fail Elliot before I even gave them a chance and I was exhausting myself in the process. So there I was at 2 a.m. the morning of his evaluation stressing myself out when God brought me to my knees again.

"When the cares of my heart are many, your consolations cheer my soul," Psalm 94:19 tells us. Goodness, I love that verse. The NASB version starts with "when my anxious thoughts multiply within me." I feel like it's so easy to go down the rabbit hole of worry. Having a child with special needs brings on a plethora of anxious thoughts and they can spread like wildfire in my brain. I've taught myself when I get overwhelmed to turn off the noise and pray. Just pray. Cry if I need to. Breathe a lot. And pray.

About a week after his evaluation, I attended Elliot's first ARD meeting. I was so nervous. I prepared to walk myself into a room full of naysayers, but knew God was in control. When it came time for me to introduce myself, I pulled out Elliot's latest school photo from our church's mother's day out program. I set it up on the table so they could see his big blue eyes through the whole meeting. There was a collective "awww" when they saw the picture. Elliot can charm a room that's he's not even in!

The meeting went well. I made known our goals for inclusion when he gets to kindergarten and was met with positive feedback. He's also going to be at the same school as his sister, which is such a blessing! I truly feel that we're off to a good start. I plan to stay vigilant and on top of his IEP, but isn't it so comforting to know that God already has plans in place? Isn't it so freeing to relinquish that control? It's hard to do, but once you are able to trust God completely, suddenly those anxious thoughts drift away.

So go ahead, let go of the glue bottle. It might get messy, but God's always in control.

The Day I Got Into An Internet Kerfuffle

Let me say, I hate confrontation even sitting behind my computer screen. I don't do well in arguments. When someone has upset me, I'm the type of person that will pretend nothing is wrong until I just get over it. And if I feel like I've upset someone, I can't sleep for days. I've never been someone that engages in Internet battles with strangers and am usually the first to delete something I've posted that I'm worried might unsettle someone.

Well, there's a first for everything.

During my first two pregnancies, I immediately joined birth month groups on the What To Expect app. I loved logging in and seeing what fruit my baby was the size of that week. I enjoyed reading facts like her fingernails are growing or his hair is sprouting. I loved scrolling through discussions and "talking" with other moms due around the same time. So naturally when I found out I was pregnant with Wood Chip #3, I eagerly signed up for the February 2017 group.

For the past few weeks many posts have been dedicated to genetic testing. Usually moms are just eager to find out their baby's gender early, but yesterday someone typed something that unhinged me. To paraphrase, a woman responded to a post about genetic testing sharing that she terminated her last pregnancy because of a Trisomy 21 diagnosis and that her genetic counselor said that her baby would likely have a low quality of life and many health issues.

People, this is why there is a 92% worldwide abortion rate of babies with Down syndrome. Because there are genetic counselors out there giving outdated medical information and telling worried, vulnerable parents that people with Down syndrome have a low quality of life.

I responded to the original poster (not the woman who had the abortion) with Elliot's story and stated the facts about Down syndrome. I mentioned that I wanted to clear up some misinformation. Somehow this led to over the span of 24 hours me being attacked by a few women. I held my ground, but I won't get into specifics. Let me just say I have sat at my screen and literally cried my eyes out. And not because of anything that was said to me. But out of grief for all of those babies who will never have a voice. All of those babies who will never have the chance to prove people wrong. I cry because of all of those mothers who made a choice with false information in one hand and fear of the unknown in the other. All of those parents that will never experience the unexplainable, unmatched joy that a child with Down syndrome brings to a home.

I don't understand why genetic testing has been made into this sort of witch hunt for babies with special needs. I don't understand why so many in the medical community have seemed to adopt Hitler's views on children with disabilities. I don't understand how our culture has decided we get to choose which lives hold value and which ones don't. But what I do know is that no test or genetic counselor could have told me how loved and treasured Elliot would be. No test could have ever shown how full he would make my life or how happy we would make his.

One recurring argument in the internet exchange yesterday was that you never know what the range of abilities a child with Down syndrome would have. May I ask, how on earth is this an argument to terminate a pregnancy? All children have a range of capabilities! And what does that really mean? What if there was a test that showed your child will have some other learning disability? Or that your child will one day develop childhood cancer? Or that your child will grow up to be a convict? Or that your child will have blue eyes instead of brown? Would these be reasons to abort?

I feel all of this genetic testing though often well-intentioned (goodness, we just had it done so we could be prepared) has become a dangerous slope and is robbing the world of true diversity. There are entire countries, such as Denmark, boasting that they are close to eliminating Down syndrome. Let me be clear. You can never truly eliminate Down syndrome. It is a random, natural occurrence that happens in 1 out of 700 pregnancies, so the only way you can "eliminate" Down syndrome is by aborting every single unborn baby that prenatally tests positive for it.

I make no secret that when we found out Elliot had Down syndrome we were crushed. Down syndrome was not part of our plan. But we've learned so much since that day. We've learned that today thanks to early intervention and intentional parenting, people with Down syndrome go on to lead very full lives making friends and holding down jobs. We've learned that they can learn to live independently though most do remain at home contributing to daily chores. We've learned that most siblings take it as a privilege not a burden to care for their brother/sister once mom and dad are gone. We've learned that a whopping 99% of adults with Down syndrome are happy with their lives (I wonder what that statistic would be for typical adults). We've learned that while they do have many health concerns, modern medicine has lengthened their life span from 25 years old in just 1983 to 60 today.

But most of all, we've learned that people with Down syndrome are more like us than different.

I may be nonconfrontational, but I will not stand idly by while outdated information is being spread about Down syndrome. It will be my life's work if it has to be to show people the value in these children's lives. And as long as there are genetic counselors shoving doom and gloom down scared parents throats, I will continue to shout my son's worth.

http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/

Crafty Fridays - First Fall Session

As many of you know by now, a few months ago a friend asked if I could do crafts with her kids. We invited a couple of other moms and Crafty Fridays was born! It's been such a treat to bring out the creative side of the kids who have come so far and I'm so excited to announce the calendar for the First Fall Session.

First off, I have to say that Halloween is my favorite time of year, so I'm crazy excited about these upcoming crafts (and the ones in the Second Fall Session for that matter)!

If you are interested in coming to Crafty Fridays, here's a little more info. Please read through to the end.

WHO:
Classes are intended for ages three and up. Crafts and books are selected to interest and engage children of all ages. So far we've hosted friends up to age eight. Two-year-olds are welcome as long as a parent doesn't mind assisting. Class size is limited to eight friends, so reserve your spot today!

With a background in teaching high school journalism, I love getting kids of all ages to think outside of the box whether that be on a yearbook spread or on a piece of construction paper.

WHAT:
Crafty Fridays aims to tap the creative side of all children by introducing them to picture books and allowing them to take the lead on their individual craft projects with guidance. Every class starts out with us reading a book together and then producing 2-3 crafts.

For example, we've read "I'm the Best Artist in the Ocean" and created our own squids with "squid ink." We've read "If you Give a Dog a Donut" and decorated our own cardboard donuts. We've read "When Louis Armstrong Taught Me Scat" and made musical, glittery collages. 

WHERE:
Crafty Fridays is held in my upstairs craft room. (Thought I must admit, we might travel to the backyard for some outdoor art if it's an exceptionally nice day!) To limit distractions, parents and younger siblings that are not participating are encouraged to wait downstairs. I have toys to entertain little ones and daytime television to entertain moms (ha!).

WHEN:
Crafty Fridays starts promptly at 10:30 a.m. and lasts about an hour. See schedule above for exact dates.

WHY:
Your child will work with all kinds of arts and crafts supplies from watercolors to acrylic paints and recycled materials to objects founds in nature. The idea is to show them that art and creativity can be everywhere they look. Paper plates can become moons. Pine cones can be painted. Aluminum foil can be your canvas.

HOW:
Classes are $5 per class, per child. You can pay upon arrival, but must RSVP at the latest by the Wednesday before each class. You can pay $25 up front ($5 savings) to be sure your child has a space in each class. I take cash or check. Though I understand last minute cancellations are sometimes unavoidable, please be mindful supplies are purchased the day before accordingly. To reserve your spot, for more information or just to let me know you are interested, text me (Melinda) at 832.434.7997. 

 

Crafts, Friends & Donuts

This blog post is a bit different than my others, but I wanted to share something new and fun that we've added to our weekly routine! A few weeks ago, a friend asked if she could pay me to do arts and crafts with her kids once a week. People. I had been thinking/praying about this exact thing. Seriously for several months I had been thinking to myself, "geez, wouldn't it be cool to host art lessons for young children and get paid for it all while still staying home with my own kids?"

After I put the schedule together, this friend and I decided to invite a couple other kiddos into the mix and (ta-dah!) Crafty Fridays was born!

I start out each session with a book and then we craft off of what we read. We've painted with "squid ink." We've made bookmarks out of paint swatches. We've made hula girls out of washi tape. But guys, today's craft HAD to be documented in the blogosphere. It was just that cute.

When I saw that National Donut Day was a Friday, I knew I would have to plan accordingly. I reserved "If you Give a Dog a Donut" from the library and another mom volunteered to bring the donuts. Which of course all of the moms sat around and ate before class started because Shipley's.

After we read the book, we got started with our crafts.

1. Cardboard Donuts
I had this vision of each kid having three donuts to decorate that they could then use for pretend play, so I wanted it to be thicker than cardstock. Luckily we just had an Amazon shipment, so I took my x-acto knife to that box spending the better part of Tuesday night cutting out donut shapes. Let me tell you.... this craft was worth every hand cramp I had from cutting them out! I had the kids use water-based acrylics for the icing. For the sprinkles, I used leftover confetti out of cascarones (Easter eggs) that I still had in our cabinet. Guys, look at these! So darling. And I love that this craft was age-appropriate for each kid here since they range from three to eight years old.

 

2. Wooden Spoon
I found these wooden spoons for super cheap at Walmart, so I just had them use the same paint off of the donuts to paint a wooden spoon again for pretend play.

3. Aprons
I feel as though I should get a ribbon for creativity here. I found these aprons in a pack at Hobby Lobby for $11.99. With my 40% off coupon, I thought it was a good deal! I knew I wanted the kids to paint donuts on it, so I spent some time trying to figure out some kind of stamp or stencil... when it dawned on me. A pool noodle! I sliced one we already had into several stamps perfect for tiny hands. I gave them some fresh paint and let them have at it. These kids were so adorable. You could tell they were all so proud of their creations!

We wrapped up the morning with, of course, more donuts!

I am so thankful that God has given me mom friends that allow me to teach their kids in a fun way. This has been a fun few weeks and I'm so looking forward to what Crafty Friday holds in the future. I probably have room for two more children, *wink wink*.