Category Archives: Adelaide {on a noble journey}

A Rose By Any Other Name | My Thoughts On Disability Language

I was a Special Education teacher back in the day. Before kids. Before Adelaide’s first MRI. So I took class after class focused on disability law, people first language, and being politically correct at all times. I was once involved in a graded debate about the appropriate use of disabled vs. differently abled. 

I left college scared to death that I would use the wrong word and offend someone. Because I had been conditioned that only certain terms were acceptable. And certain terms were deplorable. 

Last Summer, we were at Silver Dollar City. Adelaide was in her wheelchair, enjoying life. The attendant asked if we had her special riding pass booklet, which shows the rides and attractions she can legally ride. It’s catered to her specific abilities. Graham answered, “We’ve got her book! She’s disabled!” 

“You should use other words for her. Maybe that’s offensive.” A stranger in line corrected Graham. I was about to step in when Graham looked this man in the eyes, and stated in true Graham-fashion, “I don’t know what ‘offendisive’ means, but you see da wheelchair, right? Cuz she’s in one!” 

I have no idea if this man had a disability, cared for someone with a disability, or just liked butting into random conversations while in line at a children’s play area, but I was taken back to my college days. This stranger never once smiled at Adelaide. Or greeted her. Or asked if she was enjoying herself. His only interaction with us was correcting a child. 

Our family uses many terms for all our kids. Disabled, disability, non-disabled, neurodisabled, nonverbal, wheelchair-user, normal, atypical, neuro-typical, verbal, special needs, and many others. I cater our words to the occasion. Forms, discussions with doctors, interactions with 90-year-old women at the grocery store. Because I prefer that people interact with us rather than giving off a vibe that we’re going to judge you for using the “wrong” word. 

“Is she retarded?” An elderly man with oxygen and a cane asked me, while we were visiting Bob in a transitional care unit. Bob was just a few weeks from going home on hospice. Everyone at the facility loved when Adelaide visited. She was always clapping and laughing. I didn’t say, “You aren’t supposed to use the r-word anymore.” I knew his heart and he genuinely wanted to know about Adelaide. “She has lots of brain issues and can’t speak or walk, but we aren’t sure what she’s thinking. She loves counting!” Then he stooped down to count with her. I later found out no one visited him. Seeing Adelaide brought him joy. 

Imagine if I had said, “We no longer use that word. If you were on the internet, you would know this. And some people don’t want you using Special Needs or disabled, either.” 

Talk about a conversation killer. With a lonely veteran of a foreign war, who just wanted to chat about Adelaide. 

I’m not saying you should use the word retarded. I’m saying that Dave and I focus more on engaging in conversations with people who want to know about Adelaide, and we use a variety of language to do it. 

When a small child comes up and asks, “What’s wrong with her?” I never say, “The word ‘wrong’ is a bit harsh.” I squat down next to Adelaide’s wheelchair and answer, “When she was growing in my belly, her brain formed a different way than yours did.” And I continue from there. 

If I knew what Adelaide wanted me to say, I would say it. But I don’t. Dave and I are her voices. We speak for her. She is nonverbal. I was once told in a forum that the term ‘nonverbal’ is offensive. It was news to me. I still use it for my own child. And I’m sure I use lots of other words that would make college professors cringe. But this is my world. A Special Needs Mom raising a kid with disabilities. And I’ll use the words I want to use to teach people about our family. 

I long for the day when people see Adelaide and greet her at Silver Dollar City, instead of making assumptions about which buzz words she would choose if she could talk, sign, or use a communication device. She does understand “Hello!” and will often return the greeting. So let’s start there. Maybe focusing on the person is far more important than focusing on people first language. But that’s just my two cents. 

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I Think I Checked The Wrong Box | Raw Thoughts About Intellectual Disability 

“Do you want to teach kids with Learning Disabilities or Mental Retardation?” I was an 18-year-old at Freshman Orientation. I had just added a Special Education emphasis to my Elementary Education coursework. It would add close to 25 extra hours, but I knew I wanted to become a Special Education teacher. I just had no idea which kind. I hadn’t thought that much about it. I had lots of experience with learning disabilities. But I had some experience with complex medical needs and mental retardation. I looked at the boxes and just checked one. It took 15 seconds. 

At Adelaide’s IEP meeting in the Fall, I asked for additional testing. Dave and I wanted to ensure that Adelaide ended up in the right placement for kindergarten in 2017. I’ve had lots of experience with IEP meetings, evaluations, and progress reports. It’s different when it’s your own child. Everything feels slightly fuzzy. I wanted some hard numbers on Adelaide, not just how I feel things go at home. It’s difficult to assess a nonverbal child, but I signed off on the district doing what it could. 

I filled out some different assessments at home. Ones I had only done as a teacher. Checking the parent box this time around. I cried. Even without knowing the percentiles, I knew the raw scores were already low. 

I sat at the meeting and got my first glimpse of Adelaide’s results. I knew what each subscore meant. I knew what the language meant. I knew that I had been right. Adelaide needed a completely self-contained kindergarten class. It wasn’t just a hunch. It was fact. I saw Intellectually Disabled and knew it was basically the new term for Mental Retardation. The box I didn’t check in college. 

Back before 9/11 or meeting her husband or being old enough to drink, a childless teenager checked the Learning Disabilities box. Altering my 4 1/2 years of college. And I don’t know if I checked the right box. 

I’m the mother of a child who scored lower than any student I ever worked with. I’m inexperienced in all of this. Everything I did with Intellectually Disabled children was volunteer work as an assistant. 

The person delivering the new testing information almost whispered the words Intellectually Disabled. I think we all hoped there was a mistake somewhere. But the truth was there. Adelaide uses very few words and signs meaningfully. She drinks from a bottle. She loves BabyFirst TV and other toddler shows. She doesn’t play with toys, but chews on them. She doesn’t enjoy big kid books. 

I was sitting there, feeding her Cheerios, realizing that this could be it. The neuro team mentioned plateauing. “One day, Adelaide will start to level out.” She has already done so much more than her MRIs would suggest she’s capable of, but maybe we’re starting to see Adelaide doing her best. 

Or she could surprise everyone and use a communication device to tell us paragraphs. She could learn to read. We have no idea.

But, at least for now, we’re working on adaptive skills. Learning to use a cup or straw. Possibly potty-training on a schedule. Completing two piece puzzles. Stacking blocks. Identifying colors and objects. 

I loved teaching the classes I did for those five years before birthing Graham, but I sometimes lie awake at night thinking about that one box. How I could help Adelaide now if I had a background in her disability. Why didn’t I choose Mental Retardation? Or why didn’t I add the 12 hours of night school to get my Speech training? My advisor practically begged me to do it, but my scholarships wouldn’t cover it and I was working 40 hours a week. How would I keep my job? I should’ve made it work.

I use what I learned in my elementary education classes to teach Graham, but maybe I should’ve studied something else. Physical therapy or occupational therapy or a hundred other things that would help me help my own daughter. Or maybe even something that I could do now from home to make money. Accounting, editing, copywriting, and on and on and on. Being a single income family has its difficulties. I literally bring no money to our family finances. Because I have no marketable skills. 

I obviously can’t change anything about my Bachelor’s degree. And I can’t change Adelaide’s brain. The scores don’t change Adelaide’s worth at all. They are just numbers. And I have a transcript full of classes I never use. May never use again. We’ve always known it was unlikely Adelaide would live on her own. She’s our lifelong roommate. We’re slowly preparing for that reality.

Dave says I ramble. I think it helps me process everything. These thoughts and tears are just mine to deal with…not even sure why I’m typing them here. They are part of my special needs mom journey. I just wish I would’ve prepared better for all of this. Since I can’t, I eat some ice cream and binge watch Megan Follows and Jonathan Crombie as Anne and Gil and then cry in the shower. 

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And Then She Was Five

Adelaide turned five. She was supposed to have a Jelly Bean birthday party over the weekend. I made a banner and table decorations, had everything ready for cupcakes, and plans to make my mom’s famous Broccoli Cheese Potato Soup. We had supplies and gifts and ornaments and outfits ready to go. It was the first birthday party I haven’t wanted to cancel. 

I sound like a monster, but Adelaide’s birthday is a difficult time for me. In years past, the highchair prep and suggested gift list and lack of friends made it so hard to get excited. So I talked to Dave about canceling, and he supported it. Then I changed my mind, and he supported it. And we did that a few (dozen) times every year. But then we had her family party and loved it. 

This year, I was ready! Emotionally and physically. Dave teased that I jinxed it. 

Since I had the party plan and the heart behind it, our kids ended up with fevers and vomiting. At 4 am, on a Friday, I knew we had to cancel. It was so disappointing. Her 5th birthday. Cancelled. 

On her actual birthday, she was still sick. No school. No cute clothes. No fun anything. She took two naps and wore her boy pajamas from a yard sale. All her cute girly pajamas were dirty. Because I was, and still am, horribly behind on laundry. That’s what happens when you end up with 3 loads of vomit laundry on the first day of a stomach bug. 

My mom dropped off balloons and a miniature cake for her birthday girl. We put Adelaide in some real clothes and sang Happy Birthday. We took a few minutes to celebrate our first daughter. The one with the unknown life expectancy. The one with a combination of abnormalities her geneticists haven’t seen in anyone else. Our rare snowflake. The one who brings us joy every single day. 

We let her eat a few bites, then put it away. Stomach bugs and birthday cake don’t mix. But we couldn’t let the day go by without her knowing just how much she means to us. And she’s been begging for cake since she saw Christmas lights go up in November. She knows that Christmas means birthday.

We won’t get to reschedule. December is such a busy month and we already had only half the invitees coming that day. But we’re going to take Jelly Bean cupcakes and a banner to our family Christmas celebrations. And she’ll wear her special outfit and eat cake and clap when we sing. Our beautiful December Baby is getting her day…and I don’t think Jesus will mind one bit that He’s sharing his with Miss Adelaide. 

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Walking Hand In Hand

I opened the van door and Adelaide shouted, “WALK! READY!” I removed her from the car seat and assumed our normal position: me in front, walking backwards, holding onto both of her hands. “NO!” She wouldn’t hold my hands, she kept letting go of one. She wanted me next to her. 

We had tried it earlier in November. She had taken a few steps, crunching the leaves, and then collapsed. I could tell she just wasn’t ready for it, but she had laughed all the way through our trial run.

But on the last Tuesday in November, she was ready to walk hand in hand. Twelve blissful steps. 

Just days before her 5th birthday, Adelaide and I walked the way I had imagined we would at her 1-year-old birthday photo session. I waited 4 years for those precious seconds with my girl. It was a dream come true. 

She collapsed onto the ground, giggling all the way down. 

But she didn’t stay there for long. “WALK! WALK!” I carried her back to the van, got behind her, planted her feet on the sidewalk, and placed my hands under her armpits. I could tell she was exhausted, but wanted to walk into the house. 

She took more than 100 supported steps, then walked up our porch’s three stairs. She kept going, as we walked over the threshold. She shouted, “WALK! WALK!” as we made our way to the carpet. Then she collapsed onto the carpet laughing and clapping. So proud of herself. 

Still not sure how these years have simultaneously felt like one fleeting hour and an eon. It’s the paradox of parenting. 

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I was trying to gather a few photos for Adelaide’s upcoming 5th birthday post, and this happened…

Happy Almost Birthday to our Adelaide! 

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I’ll Be The Waiter!

Me: “Daddy says we’re going to a restaurant! Let’s get our shoes on and be ready when he gets here!” 

Graham: “Yay! Were pretending restaurant tonight! Let’s get fings ready in da kitchen! I love when we do restaurant!”

Me: “We’re going to a real restaurant tonight! Let’s get our shoes on!” 

Bess: “I be the chef! I help Daddy make food! I love pretend restaurant!” 

Me: “I know we pretend restaurant a lot, but tonight Daddy is taking us to Cheddars! We are eating at a real restaurant tonight! Let’s get our shoes on. He’s almost home!”

Graham: “I’ll be the waiter! I love being the waiter! Let’s go get the restaurant ready before Daddy gets home!”

Me: “Does anyone understand that we need shoes? Daddy is taking us in the van to Cheddars! Please put on your shoes!”

Bess: “I make menus! You pick pizza?”

Me: “I give up. Adelaide, are you ready to go to a restaurant?”

Adelaide: [crawling to the door] “EAT! GO! EAT! READY!” 

Me: “One down. Two to go!” 

We had such a fun time! It’s our new October 31st tradition. The restaurant was pretty empty. Our service was amazing! Paxton, a lovely young lady, was so attentive and conscientious of Adelaide’s needs. She even brought treat bags to the kids. Tiny candy for Adelaide, allergen-free candy for Bess, and ‘big boy’ candy for Graham. 

Cheddars is one of our go-to restaurants when we do eat out, because Bess has no issues with their food, Adelaide has plenty of room, and Graham’s extremely loud ‘inside voice’ phases no one in a place so loud. 

What a fun new tradition! Even though we absolutely love our pretend restaurant nights. Our little people are simply the best. 

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Adelaide’s First Stairs 

Yesterday, Adelaide decided she would walk all the way to the house. She took 89 reciprocal steps, including a turn, and went up our three stairs. I was there supporting her torso, but the leg strength and balance were all hers. She even problem-solved when her foot got stuck…moving it slightly back and then moving it forward. At the stairs, I just waited to see what she would do. When she lifted her left foot onto the stair, shifted her weight, and pulled her right foot up, I cried. The happiest mom tears. She took the last two stairs, leading with her left, and then collapsed onto the porch. All smiles. 

Today, it’s raining. I planned on carrying Adelaide into the house. But she had other plans. “I…..WALK…..RAIN!” So I gave my phone to my favorite boy, and we snapped some photos of Miss Adelaide walking. 

What a beautiful October surprise! 

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Ready For Sidewalks 

Me: “Bess, it’s time to walk to the house.”

Adelaide: “READY! WALK!”

Me: “Adelaide, you want to walk to the house, too?”


Me: “Okay! Let’s walk!”

I took her out of her car seat and positioned her in the middle of the sidewalk. I firmly held onto her torso as she took 48 reciprocal steps up the sidewalk. Forty-eight. Shouting, “READY! I WALK!” all the way. Bess was cheering, “GO! GO! GO!” Adelaide collapsed on the 49th step. With the biggest smile on her face. “BLUE!” 

Yes, sweet girl, we can watch Blue’s Clues. 

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Pregnancy After Miscarriage | Semi-Coherent Thoughts

We’re having another baby. We found out in July, before the 6 month anniversary of losing Laurence & Flannery. And my first thought was, “What if I lose 3 babies in one year?” But Graham’s fears about becoming a Hermit-Man taught me some things about myself. Dave and I were equal parts elated and nervous-out-of-our-minds. We decided to keep it between us. 

We needed time to process. I needed to process that I was going to be pregnant on the due date of my dead children. Surreal. Or maybe I wouldn’t be. Maybe we would lose this baby and I’d be having another D & C on their due date. My mind was full of muddled emotions. 

With Graham, I was excited from Day One. With Adelaide, I was excited from Day One. With Bess, I was overwhelmed. Excited, but scared. Would my third baby also have disabilities? How would I handle that? A double wheelchair? How was I going to handle three kids, even if it didn’t have any abnormalities? Pregnancy hormones sent my brain in a hundred directions. 

When I became pregnant with the twins, I was happy and nervous. Because it never felt the same. My body was off. I remember feeling two babies quicken just days before we lost them. One felt strong, one felt weak. And then they were gone. 

This time, I found myself almost unable to celebrate. Still reeling from the trauma of burying my children in February. 

I decided to be proactive. Long gone were the days of showing up at my 8 week appointment and feeling normal. I requested bloodwork. Right away. They squeezed me in. 

One of my best friends dropped everything to watch the kids. Heather bought popsicles and set up a kiddie pool. No questions asked. 

And the first batch of bloodwork was great. 

We announced to family, but decided not to tell Graham. He has always had Baby Fever and I couldn’t put him through that again. We weren’t going to keep anything from him long-term, but wanted to avoid a repeat scenario of Mommy leaving the house pregnant and coming home, well, not. We decided to wait. If the baby died, we would tell him later. That was our plan. But we were starting to feel optimistic. 

Then my second batch of bloodwork came back with issues. There was talk of baby being ectopic. If not ectopic, my uterus was not doing its job to keep the baby. I needed to go on meds right away in order to give baby any chance of surviving the first 3 months. 

Basically, my fears had come true. They scheduled an ultrasound. We were expecting to see a tubal pregnancy or no baby or, my worst fear, a baby who had already passed away. We had family praying, but I told Dave I was keeping my expectations as low as possible. I bawled through church. Praying verses over my growing belly, hidden under my clothes. I cleaned my entire house, because I just knew I was losing my third baby in one year and our LifeGroup would bring food. That’s what LifeGroups do. You live life together. And you bring food when life ends. Our LifeGroup leader came to watch our kids. Knowing we were most likely getting bad news. That’s bravery. 

The day before, I took my first baby bump photo. Decided it was probably the first and last. The only photo from my final pregnancy. We had no idea if there was anything alive in there. 

We went to the appointment. It wasn’t all smiles and peeing in a cup and happy times. We barely talked while we waited. I had been praying Baby would make it, but I couldn’t bring myself to hope for it. We went through the motions and I was literally holding my breath as they put the gel on my belly. I prayed verses over Baby. And then we saw something. With a heartbeat. And she said, “There’s a fetus in the uterus!” 

And I’ve never been so overcome with joy by six clinical words. Dave and I were crying and laughing. Our worst case scenario visit had suddenly done a 180. They did measurements and checked everything: uterus, sac, umbilical cord, and baby. Everything looked exactly the way it was supposed to look. But I’m not naive and I knew there was still a chance for loss. The medication was working, but would it continue to work? We left and I got a Sonic drink. We were still in shock. We went home and had breakfast with Jenny. Our kids running around and playing. All of us just breathing a sigh of relief. 

And that afternoon, we got the call from the fetal specialist reviewing all our images and video. He was more than pleased. We dropped to a 3% chance of loss. 

And that should’ve been the end of my anxiety. But I focused on that 3%. Because pregnancy changes after miscarriage. I was still struggling with the fact that we would most likely have a child in our arms on Resurrection Sunday. But we might not. 

Graham was getting really suspicious of my growing midsection, but I didn’t want to tell him. And I tried to hide my belly from him. “I know you and Daddy are keeping a secwet fwom me.” Bess started talking to my belly and said she had a Baby Brother in there. 

On August 25th, I went to see my hair stylist. And she said something that changed me. “Lyndse, you could lose this baby. We can all lose babies. But if you don’t, and you’ve spent your whole pregnancy dreading the loss, you could be holding a baby in April, but full of regret from never celebrating your last pregnancy. Celebrate. And you’ll have good days and bad days, but live the days. Don’t regret not living them.” 

So we decided to go public that weekend. On the twins’ due date, we announced that we were having another baby. On the last Friday in August, I mourned two children and celebrated another. 

We were blessed with calls and messages and congratulations from so many people. Some people didn’t congratulate us. At all. Either dealing with fertility issues or loss or just didn’t care. I chose to focus on the people who joined us in celebration. They were the same people who had been there during our grief, and I was blessed by their commitment to mourn when we mourned and dance when we danced. Family, friends, and people we’ve never met. They joined us in praying over this Baby. 

We told Adelaide. She asked for fries. She’s definitely my daughter. 

Then we announced to Graham and Bess when they returned from a sleepover at Grandma’s house. It was something I will treasure always. 

Graham’s excitement and smiles. His questions about the twins’ death and this baby’s chances at life. “Mommy and Daddy can’t promise, but everything is looking good with this baby.” 

Bess was too tired. Proclaimed she didn’t want to be a Big Sister. But changed her tune about 40 minutes later and hasn’t stopped talking about the new baby. 

Everyday, Graham asks if we’ve lost the Baby yet. I hate that my 6-year-old says yet. Expecting loss. I keep reminding him that we celebrate. We can’t know exactly what will happen. 

Today, I went for another follow-up appointment. We were checking to make sure the medication was still doing its job. And I saw my baby kicking and moving and the heartbeat was thumping away. 

And everyone was so happy. Nurses were congratulating me. And I wanted to put that 3% out of my head. But then they said I needed to stay on the medication longer, just to be safe. “We’re not taking any chances.” But I fill the prescription and I keep celebrating. No matter what happens, I’m celebrating my last time carrying life in my womb. Pregnancy after miscarriage is a whole new world. And I thank the person who thought to put a box fan in the OB room. Bless that person forever. 

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