The Blue Elephant in the Room

I vividly remember one of the first times I saw a child on a leash. It was at West Park Mall and I judged those parents hard. I was all “Kids are Humans, Not Pets!”. Most likely I said more than once that I would “never” put my kid on a leash. Clearly I was not yet a parent of a two-year-old boy that had finally mastered the arts of both walking and completely ignoring the words “no” and “stop”.

It only took one evening consisting of a trip to Target where he refused to sit in the cart and my poor Dad had to chase him all over the store followed by dinner at Culver’s where he refused to stay in the high chair and walked around begging food from strangers for me to start trying to figure out how to not take him anywhere ever again. But when I ran into a fellow mom from my hometown who had her young son safely strapped into a backpack harness with a leash, I knew I had found the answer to my delimma.

So lo and behold a few weeks later Santa brought Moses a super cute blue elephant backpack with a nice leash attached that had gotten good reviews on Amazon. Last week I finally got to try it out.

Because of the flat feet and low muscle tone that came with having Down syndrome, Moses gets to wear orthotics to help stabilize his feet and make sure that he learns to walk properly. No big deal, right. Actually, it’s not UNTIL trying to find shoes that will fit. I’ll put trying to find shoes in a toddler size 6 or 6.5 right up there with going to the dentist or gynecologist. Necessary but not a whole lot of fun. (I will say that there are some really cool shoes for kids with braces in a size 10 or above. Hopefully he’ll have graduated to inserts by then, but if not, then at least I have hope that it won’t be so hard to find shoes for him.)

One of the tricks I learned from the last set of braces was to get shoes in extra-wide and take the insoles out. Another thing I learned is that shoes with a velcro strap make putting the shoes on a lot easier and quicker as opposed to shoes that tie. And since Moses has proved to be quite apt at sliding his foot right out of both the shoes and braces, easy and quick are must-have features. I have also learned that the velcro strap on most toddler extra-wide shoes are not long enough to accommodate chubby toddler feet encased in braces even after taking the insole out. Fun facts, huh?!

After searching online and coming up short, I decided to just take him to our local Shoe Carnival because I was told it carried extra-wide shoes that should work. Josie was at a basketball game with Tyson, so I also saw it as the perfect opportunity to use the leash. I was so optimistic that it was going to go well that I even thought we might go to Target, too! So when we got to the shoe store, I was practically whistling as I strapped him into his super cute blue elephant backpack and carried him from the van to the store. Once inside, a friendly store associate asked if I needed help finding anything, and I told her I was looking for extra-wide toddler shoes. She said would show me what they had, so I put Moses down, held on tightly to the leash, and off we went.

It started off well as we followed the associate, Moses on his leash, me holding on to it. When we got to the section with his size and she started showing me what they had, Moses seemed content to sit down and pull shoes and boxes off the shelf. Now, I know that this doesn’t necessarily sound like a good thing, but he was staying in one place and I 100% planned to clean up his mess so it was absolutely a good thing. I totally felt like I was winning.

That good thing lasted about one whole minute, which was how long it took for Moses to lose interest in the shoes and want to walk around. As the associate was showing me the shoes that came in wide (not extra-wide), Moses walked as far as his leash would let him. And then he stopped. And he was not happy.

That’s when it got fun.

There I was, trying to pay attention to what the sales associate was telling me and showing me while also holding on to the leash that Moses was pulling against with all his might. At this point, I got the feeling that the associate wasn’t quite sure what to think about the situation going on in front of her. Kinda like she was maybe thinking, “Is this okay? Does that little boy have Down syndrome? Can she put him on a leash like that?” And my mental answer to all of that was, “Yes. Yes. And yes.”

As I was trying to explain that I didn’t quite know what size he needed because of the braces (which I had of course forgotten to bring with me), the associate was looking at me like I was an idiot and Moses was really starting to get mad. He started yelling and tried so hard to keep going forward that he ended up falling on his little butt. I couldn’t help but to laugh at him and then proceeded to ask the associate to give me two of the shoes in both a 6 and a 6.5. She gave me a really confused look like she was wondering if I had ever actually bought shoes before, so I said, “I’ll just take them home, try them on him with his braces, and then bring back the ones that don’t fit.” She then helpfully informed me that I could in fact do just that.

She started walking towards the registers and I gave Moses’ leash a little tug and gave a cheery “Let’s go!” His response was to yell at me and try once more to go the opposite way. So I picked him up, carried him to the register where he immediately wanted to be put down. Leash firmly in hand, I put him down and turned my attention to the associate who was helpfully telling me again that I could return any of the shoes that did not fit as long as they had not been worn and I had my receipt because, you know, I’ve never bought shoes before.

After Moses had examined the shoestring display behind us, he was ready to explore the rest of the store. When he felt that dreaded tug of resistance after taking about 6 steps, he surrendered to the leash. As in he flat out laid face down in the middle of the floor and just gave up. You might imagine the look of confusion/concern on the poor sales associate’s face when I just laughed at him and said, “Life is hard, isn’t it, bud?” When I swiped my credit card to pay for the shoes that were undoubtedly all going to be returned (because they were wides, not extra-wides), part of me wondered if the information from it was going to used to report me to Child Protective Services.

I got my bag and receipt, put Moses on his feet, and let him lead the way to the door. Before picking him up to go back out to the van, I stopped to take a picture of him on his leash to send to my friends.

Here’s the thing, I could’ve walked out of there feeling frustrated and discouraged at the lack of understanding that wide and extra-wide are not the same or at the feeling that I was being judged for having a child on a leash – a child with Down syndrome at that. But what good would that do me? Or Moses? None at all.

So instead I just laughed as we drove right past Target to go home. I laughed at that poor sales associate’s reaction to the whole thing. I laughed at Moses’ reaction to his leash. I laughed at my own reaction to it all.

Life hands us all kinds of ups and downs, and there are some that we can and should be frustrated or discouraged or sad or mad about. But there are so many that we can just shake our heads and laugh at.

I’m thankful for the laugh I got out of that highly unsuccessful trip to the shoe store and the laughs I’ve gotten out of telling others about it. And I hope that maybe that most helpful sales associate saw that a two-year-old child with Down syndrome reacts pretty much just like any two-year-old child does when he doesn’t get his way. I hope that one day she has a two-year-old boy and thinks of us when she thinks of buying a leash for him. And I hope she learns that wide shoes are not the same as extra-wide.

To Parent or Not to Parent…

Some guys don’t think they want to be a dad. Maybe it’s because they’re not sure they have what it takes to be a parent…the time, the attention, the patience, the commitment. Maybe it’s because they’re not sure they want to give the time, the attention, the patience, the commitment. To be honest, those were all the reasons I didn’t want to be a mom until I became one.

When we were dating, Tyson and I discussed our shared view on not having kids. We were both older (like real old…I was 29, he was 33) and very set in our independent ways. Kids did not fit in the vision we had for our future together of basically continuing doing whatever we wanted, whenever we wanted.

Fast-forward 7 years and 2 kids later. This man was meant to be a dad. I know there are things that he misses about being kid-free, but when watching him with his children it’s easy to see he was made to be a dad.

Being a dad to a strong-willed, independent, opinionated little girl is not for the faint of heart. Tyson was made to be Josie’s Daddy. He is firm when he needs to be and the biggest pushover the rest of the time. When it comes to putting the kids to bed, Tyson is the parent that actually enforces a consistent, appropriate bedtime. However, as soon as that little girl comes walking down the hallway wanting to cuddle with Daddy and watch the football or basketball game with him, the word “No” is missing from his vocabulary.

Then there’s Moses. If there was ever a man designed to be a dad to a child with special needs, it was Tyson. Not because he works him overtime in his therapy or because he dismisses the fact that he has Down syndrome. It’s because Tyson looks at Moses and sees his son for who he is and just simply loves him. He expects out of Moses what he knows he can do and pushes him just the right amount. Tyson makes him do the correct signs for “eat” and “drink” and “thank you” during meals before he gives him something to eat or drink. Me? All Moses has to do is look at me, smile; and sign “more” and I’ll give him as many crackers as his little heart and belly desires. You don’t want to sign “all done”? Not a problem, baby boy!

It wasn’t on my mind at the time, but when I married Tyson, I married the perfect father for our children. He’s going to shape Josie into a well-rounded, respectful young woman and teach her what it looks like for a man to love and respect his partner in life. He’s going to do whatever it is that Moses will need to reach his full potential and be there for him every step of the way.

As for me, he’s going to fill my days with joy and happiness as I watch him be the best Daddy to our children that he can be.

He’s All Mine

I knew I was going to marry Tyson Moyers within a month of meeting him. From the get-go, it was just different with him, and by different I mean it was right. With Tyson there were no games, no wait-three-days-before-calling-her, no sleepless nights wondering what I did for him to just stop texting me. He liked me and he let me know it.

Because this was waaayyy different from what I had experienced in the decade before I met him, I was a little hesitant at first to trust that what I was seeing in him was real. It didn’t take me long to learn that Tyson Moyers was genuinely a good man. With him I could be myself without worrying if I was funny enough or smart enough or pretty enough or intriguing enough. He made me feel like I was simply enough by just being me. I had finally found my Prince Charming, and I was going to marry him.

Being married was the one thing I had wanted most after college. To me, marriage meant security and stability, two things that I craved after the roller coaster of my college years. Don’t get me wrong, I had a blast in college. I loved being out of the fishbowl of my hometown, meeting new people, and just being responsible for taking care of myself. However, the lifestyle I was leading was very superficial and after a while I wanted something that was real and meaningful. In my mind, I was going to find that in marriage.

Dating Tyson was fun and exciting yet comfortable and secure. It was what I wanted for the rest of my life. When the weekend of our one-year anniversary rolled around, Tyson told me he was going to take me to dinner at a nice restaurant and then we were going to go back to the place where we were introduced. I was ecstatic. I was 99% confident that he had figured out he should marry me and that the proposal was going to happen on this romantic date he had planned.

It didn’t. I was pissed. I went to church the next morning and asked God to give me more patience since Tyson clearly wasn’t on my time schedule. I went back to his house to get ready to go to the lake and proceeded to pout and give so much attitude that he suggested I not go. Although that was tempting because I didn’t like him at all at the moment, I went to bathroom, had a good cry, then went outside and got in the Jeep. I started talking to him again about halfway to the lake, and by the time we got there I had talked myself into being okay with having to wait a little longer to get engaged.

About an hour later, he proposed to me out on the lake at the spot where we had our first kiss. I know I should’ve felt more remorse for my poor behavior that morning, but I was too busy being the happiest woman in the world.

I had finally found my match. The person that would both accept me and challenge me. The person that would be my rock in my hard times. The person that would encourage me and support me when facing life’s changes and challenges. The person who would put my happiness at the top of his list of priorities. I had finally found the person who would be for me what I would also strive to be for him.

Today marks our 7th anniversary. Has being married been all that I thought it would be? Yes and no. No, I didn’t think it would take as much work as it does to keep it on track. But yes, it has given me that sense of security and stability. Yes, life with him is real and it is meaningful. Yes, I still feel like I’m enough for him. Yes, through all the ups and downs we’ve encountered, Tyson remains my rock, my encourager, my supporter, my challenger, and best of all, my husband. And he’s all mine.

“Because He’s My Best Friend”

https://www.cbsnews.com/news/rachel-newberry-ben-robinson-promposal-burnsville-north-carolina/

This. Over the years of being on social media, I’ve seen videos and stories of “typical” kids asking peers with special needs to events like prom. This one seems a little different, though, because the reason the young lady asked her friend to prom is simply because he’s her best friend.

One of my many prayers for my children is that they are loved for who they are, not just a piece of who they are. I also pray that they look beneath the surface with others, too.

Stigmas, Stereotypes, and Tattoos

A few months ago, I came across an article titled “Parents of Kids with Down Syndrome Are Getting This Tattoo“. The article told the tale of a group of 20 moms that had children with Down syndrome spending a weekend together bonding over their shared experiences and ultimately deciding to get a tattoo of three arrows to symbolize the three copies of the 21st chromosome and how like arrows, “…we rise up and move forward…we fly the highest after we have been pulled back and stretched, sometimes more than we think we can bear.” Those 20 women have since inspired hundreds of parents and family members to get the tattoo in support of Down syndrome and one another.

Within a couple of weeks, I had received multiple texts and messages sharing the article with me. Yes, I had already considered getting the tattoo after reading the article the first time but knowing that tattoos are permanent and still carry stigmas and stereotypes in the eyes of some, I didn’t know if it was really a bandwagon I wanted to jump on. Then I was tagged in a post on the Facebook by another mom asking if I was in. I could blame my public answer of “Yes!” on the couple glasses of wine I had enjoyed that afternoon, but the fact is, I knew I really wanted that tattoo.

The term “advocate” really didn’t enter my vocabulary until I was getting my Masters to be a school counselor. That’s when I learned that part of my role was to advocate for myself and the school counseling program because there is still some confusion and misunderstanding about what a school counselor is and should be (hint: a school counselor is not an administrator nor a secretary/administrative assistant…but that’s another post).

When I learned I would be most likely be having a baby with Down syndrome, that word started popping up again but I really didn’t see myself as needing to be a very vocal advocate for Down syndrome because hadn’t so many people long before me already done a great job of it? I mean, my mom told me that when she was growing up, kids with Down syndrome were shipped off to institutions because it was believed that there was no need for them to go to school. From my experience working in a public elementary school, I knew that was definitely no longer the case. Mongoloid is no longer a term used for a person with Down syndrome, and I don’t hear the “R-word” like I did when I was younger. Nope, all I was going to need to concern myself with was loving and taking care of my baby the best I could no matter if he or she had Down syndrome or not.

HAHAHA!!!! The joke is most definitely on me! Not only have I advocated for Moses since the day he was born, but I’ve also learned how important advocacy still is in the Down syndrome world. Just like there are negative stigmas and stereotypes that surround people with tattoos, there are still negative stigmas and stereotypes that surround people with Down syndrome. While there has been a tremendous amount of work that taken place to get society to view individuals with Down syndrome as people whose lives are worthwhile (because they are), there is still a sense of sadness, anger and fear that ripples through parents of children with Down syndrome when we are reminded that  there are people like Ruth Marcus who would publish a column just five days before World Down Syndrome Day in support of aborting babies with Down syndrome. And that there are countries allegedly trying to eliminate Down syndrome from their entire population. When there are doctors and genetic counselors in our own country that paint a picture of despair upon delivering the news that prenatal screening indicates Down syndrome and gently remind the expectant mother that there are “options”.

So yes, I got the tattoo. I love it. I am proud of it. I am proud to get to explain it to others what it means. I’m excited at the thought of one day seeing it on someone else that I have never met in my life and know that we’ll be able to proudly smile at each other knowing we’re in the same club. I am proud to know that I am doing everything I can to further remove the negative stigmas and stereotypes that surround Down syndrome. And who knows? Maybe I’ll even be and unknowing advocate for the tattoos, too.

All the Ups and Downs: An Introduction

My life is good. It is filled with ups. Nine years ago, God saw fit to introduce me to the man that would become my husband. Seven years ago, He led me to my role as an elementary school counselor where I get to work with amazing people to change the lives of children everyday. Three-and-a-half years ago, He gave me a daughter. Sixteen months ago, He gave me a son. He has given me an amazing network of family and friends that love and support me and drink wine with me. For all of this I am thankful. These things are my life. They are all of my ups.

However, these things are not without some downs. Marriage can be hard. Parenting can be hard. Being a good friend can be hard. Being a school counselor can be hard. Keeping the house clean can be hard. Getting the children to eat their green beans can be hard. Making myself actually get the clothes out of the dryer and fold them and put them away can be hard. Choosing between red and white wine can be hard. You get the picture.

And then there’s Down syndrome. Down syndrome has added more complexity – more ups and downs – to my life than anything else ever has. It’s a double-edged sword: Would life be easier without it? Maybe. Probably. Without it, would Moses be Moses? No. And for that, I choose to embrace it. Just as I choose to embrace my life with all of its ups and downs.

In this blog, you will mostly find stories of my experiences with having a child with Down syndrome as well as having a typically developing child. There will be times that I will also write about the ups and downs that come from the other areas of my life. As you read what I write, I understand that your experiences and thoughts may not mirror mine. If you choose to comment either in support or in opposition of my views, all I ask is that you be respectful to me and to one another.