Stephanie Wolfe

One question I get a lot is how parents can teach kids about peers with disabilities. I’m a mom to a kid that has a wheelchair, trach/vent, Hydrocephalus, a heart repair scar, and a cochlear implant. I see the curiosities. I see kids asking their parents about Addie. I see parents darting their eyes, unsure of what to say. I’m here to tell you- it’s not as complicated to teach kids about peers with disabilities as you think. Not every family may agree with my views, but I think many families will. Educate Your Kids With Basics- One of the best things you can do to introduce and teach your kids about peers with disabilities is to get your hands on books about special needs.  Books are a great way to learn about engaging with disabled. Books about varying special needs have preferred language and are a great way for kids to make the connection between books and their lives.  Teach Your Kid Everyone Is Different- God created every single person with purpose. You, me, Addie, and everyone else are all uniquely made. Playing with kids of all different ethnicities, backgrounds, and abilities is one helpful way to start this process. Look for ways in your community that you and your family can spend time with peers with special needs. In the Waco/Central Texas area we are blessed to have No Limitations Athletics. It’s an organization free to special needs families and they are always looking for volunteers to help! If you’re local, it’s an amazing organization to be a part of and a great way to learn about various special needs.  Be Curious, But Kind- There is nothing wrong with curiosity. Curiosity is how we naturally learn. There is a line though between curiosity and rudeness. Encourage your child to ask you, the peer with special needs, or their parent/caregiver their questions. More than anything, special needs families would rather you ask questions out of curiosity than stare, make ugly looks, or shoo your child away.Asking questions is a great way to learn. Many times kids have seen Addie and have said, “Why does she have those cords?” or “What’s that around her neck?” Since Addie is non-verbal, I’m always happy to answer, especially when a parent is unsure. I might chime in (especially when the parent has no idea what to do), “This is Addie! These cords help Addie breathe because she can’t on her own. Do you see how you breathe? Take a big breath! This machine does that for Addie. Isn’t it cool?” Immediately kids seem more at ease, less worried, and find it is pretty cool! Please know that it is not the duty of the peer with special needs or their family to educate you, but typically many families will be happy to share more if you ask kindly.What should you do if your child asks a rude (or seemingly rude) question? Honestly- correct them. Correcting your child is key to helping them understand the best ways to address special needs topics. Shaming never needs to happen, but calmly reframe their question in a kinder way. Saying nothing when asking a rude question does not help one bit though. We all understand that (especially younger) kids lack tact. How you calmly react and help them will go miles. You may feel embarrassed, but know that you’ll go FAR in our book if you make it a teaching lesson on how to say things in a better way. Find Common Ground- This has been hands down one of the best things I’ve found to teach kids about peers with disabilities and varying special needs. In many situations, I help break the ice since Addie is non-verbal, but it’s so refreshing when others break the ice first. Addie loves wearing bows in her hair, so if I see a little girl curious about her, I say, “Hi! This is Addie! What’s your name? I see you have a bow in your hair! Addie loves bows too. Doesn’t she look great with it?” Sometimes people find their own common ground without us initiating. They’ll say things like “This little girl has a pink wheelchair! You love the color pink too. Let’s tell her we like her wheelchair!” Something as simple as an icebreaker with common ground goes a long way in beginning the foundation.  Include Them In Activities- A child with a disability or that has special needs is still a person and including them in activities is always appreciated. They enjoy activities just as much as other kids and want friends just like anyone else. As your child grows up, encourage them to invite their peers with special needs to play, hang out outside of school, join extracurriculars, and more. If your child is worried about logistics or accommodations, encourage your child to ask you, a teacher, or the parent on the best ways to include their friend with special needs.  Allow Them A Safe Place To Ask Questions- The best thing you can do for your child is to give a safe place. Allow open conversations in your home. Read those books with kiddos that have disabilities or special needs and talk about them. When you don’t have these conversations and when you don’t allow your child to spend time with peers that are different, fear-based hate can be created. If you aren’t sure how to answer your child, do some research and come back to them, never assume.Bullying is a big deal and is a great topic of conversation within your safe place. Is your child seeing others that are different being made fun of? Encourage them to be a friend and not a bully. Ending bullying is an awesome thing, and when your child helps quash it, it is a beautiful thing.  Educate Yourself Too- As a parent, it’s your job to teach your kid about many things. We know that learning starts at home, and in order to help your child, you need to be more informed. Your child doesn’t need to be lectured or overwhelmed with facts about disabilities or other special needs. They just want you to help them understand what’s going on and how to be compassionate. The more you know, the more confident be when your child has questions. Inclusion means contributing, not just passively watching, but participating. Education absolutely helps inclusion.  Remind Your Child To Be Themselves- The best thing your child can do is just be themselves. Just because a peer has a disability it doesn’t change that they’re just a person. A non-verbal kid like Addie may not be able to participate in some things, but they enjoy your child just being themselves around them. Have a quiet kid? Maybe they can offer help to their disabled peer during activities. Have a more outgoing kid? Maybe they will want to chat with their peer or be silly with them. Whatever their personality, it is best to encourage your child to just be themselves.  I hope this guide has been helpful! I’m always happy to speak more on social media through DM on this. I love hearing from our readers and am happy to answer any more kind questions you have on this topic.  Want to know more about us? Check out Addie’s Journey to learn more!

Over the years you all have seen many blog and social media posts about Addie. I never truly sat down to write all about Addie’s journey in one space (probably because there’s really so much), but more and more I get asked about it, so I figured it was time. January 6th, 2014 I found out I was pregnant. I had my suspicions over the New Year but wasn’t sure until a few days later. We waited until Valentine’s and our conversation hearts baby announcement to give everyone the exciting news. A few months later on April 22, Mathew and I went to the doctor for the anatomy scan. We honestly had no idea how important this scan was and chalked it up to finding out if we were having a boy or girl. That morning, we finally decided on names for our baby, and headed to the doctor. We excitedly waited to see if we were having a boy or girl, and found out it was a girl! We cried from joy and decided she was Addison Olivia. Moments later, we were completely broken as we found out our sweet girl had complications, including a sacrococcygeal teratoma. We kept a lot of it to our chests even after our big gender reveal party, unsure of the future of our girl.  We dealt with many specialists before Addie was born. It honestly was a lot and tested us as a couple, as future parents, and as advocates for our unborn baby. We were told about potential complications Addie might have, but nothing was set in stone. Addie has an imbalanced translocation of her chromosomes but no syndrome name, so it was hard to give a definitive yes or no as to what to expect. Many appointments we were asked if we wanted to terminate this pregnancy, but we always said no. I remember praying and just asking God that Addie’s journey be used for His glory. I ended up giving birth to Addie a month earlier than her due date because of preeclampsia and cholestasis. There was a huge team ready to take Addie during that c-section as I vomited during surgery from the stress it took on my body. I never heard her cry once she was out and they whisked her away so fast. I had Mathew follow Addie to the NICU to make sure she was ok as they closed me up.  We spent months in that NICU. 6 months to be exact. Leaving my girl in the hospital each night was so hard, and I stayed 12-18 hours a day just so I would be by her side. Not only that, but I pumped constantly so she would have nutrition. It was something I could control, when other things were out of control. Addie had 6 surgeries, multiple procedures and pokes. We spent our first holidays as a family in that NICU. Halloween, Thanksgiving, Christmas, New Year’s Eve, and Valentine’s Day. We saw things that parents should never see like our child nearly dying right in front of our eyes, Addie’s first seizures, and more. Times where I couldn’t move from shock of what I was seeing. Other times I was screaming my head off or sobbing uncontrollably in the NICU from fear. It was horrible and I honestly try not to think about those days.  During her NICU stay Addie had a PDA ligation for a hole in her heart, removal of her SCT, g-button surgery (because majority of trach kids don’t eat by mouth), trach surgery due to bronchomalacia (flopy bronchial tubes), a craniotomy (brain bleeds from Lovenox shots and fluid from hydrocephalus), and a craniotomy drain revision. After 6 months in the NICU and a total rollercoaster of emotions every single day, Addie was finally able to come home.  Addie came home for 6 days. You read that right. 6. Days. Addie was sent home on ventilator pressures lower than she could handle because doctors were nervous to send her home on such high pressures. Because of that, Addie actually was showing signs of respiratory distress before we were even discharged but we were all too blind to see it. She cried and turned blue and needed bagging from an ambu bag constantly. Nurses weren’t showing up for their shifts and in 6 days we only had half of our shifts filled. Beyond exhausted from staying up night and day, run-down, terrified, and more, I finally realized I couldn’t handle everything and called 9-1-1. Addie returned to the hospital, but this time to the PICU.  Addie ended up staying in the hospital until June. She had been put on paralytics, had EEGs, and much more during that time. But on June 22, 2015 Addie finally came home, just 4 days before she turned 10 months old. We were nervous she would end up back in the hospital again, but things were so much more different this time. Addie was happy, stable, healthy. Since then, we’ve done everything BIG in our house. Addie had a HUGE 1st birthday party, we’ve gone all out for Halloween every year (links at the top of that link to all our fun Halloweens), big Christmas celebrations, and more. We had a button party once too just to celebrate Addie getting rid of her g-button. Life is short, and we have truly seen how fragile it is. So we just go over the top these days, especially for Addie. The past 5 years after have honestly been pretty good. Addie’s had a few hospitalizations and day surgeries here and there but nothing long term. Addie had a cochlear implant put in, but really hadn’t had any crazy surgeries since that first year. Addie’s stayed healthy and we’ve done so many fun things. Addie has participated in sports for those with special needs, has done cheerleading, and even joined a Girl Scout troop! In the mix, we also had Lawson, who is the best little brother to Addie.  In 2019, Addie’s seizures started ramping up and we noticed declines in her health. Addie lost her ability to eat by mouth and had to get a g-button put back in, we started on CBD for seizures caused by Lennox-Gasteaut syndrome (at one point she had over 100 a day),  Addie learned to walk with her gait trainer, and Addie was hospitalized for several months due to a UTI that caused severe dehydration, damaging her kidneys. We worried that we were reliving her first year all over again and would go on another long rollercoaster in the hospital. It was a hard 35 days, but she was healthy by November and in December we were able to take Addie on a Make A Wish trip. We pretty much talk about Addie’s Make A Wish trip daily in this house, nearly a year later. Never in our lives have we had such a magical vacation and it was all so incredibly special. I will forever be grateful to every single person that played a role in that trip. I’ve never seen Addie so happy and she deserved every single second of Disney. We experienced so many beautiful things that week that honestly, I never thought we’d be able to experience as a family. Now that I know that Addie can fly and do these things, I hope that one day it’s safe enough (and we can afford it) to take her back to Disney. Heck, maybe even try Disneyland one day! This year, Addie has done fairly well. She was hospitalized in the Spring at the beginning of everything going on in our world, and after a couple weeks came home. Shortly after, we noticed that Addie’s arms and legs were turning blue/purple and made an appointment with her cardiologist to check on her ASD (atrial septal defect). Turns out, her ASD had enlarged and we scheduled a heart cath. Unfortunately, Addie’s heart cath revealed that the ASD could not be closed in any way other than open heart surgery. Days later, we were all in Fort Worth waiting for Addie to have open heart surgery. It was one of the most terrifying times of our lives. Somehow, by the grace of God, Addie had an incredible recovery. She came home one week post-op and has healed tremendously well. It’s been 2 months since surgery and her incision looks so beautiful. Her scar will eventually fade, but I will forever be reminded of how strong she is. Now that she’s healed, Addie is on less oxygen than she once was, 1-1.5 L vs. 2-3L, had the most EPIC drive by birthday ever, started 1st grade, sprinting off her ventilator for small amounts of time, and is already back to her therapies where she is working so hard to hold her head up as she learns to walk.  So what’s next for Addie? We don’t know! We always let Addie do things on her own time, so we will see what happens next. For now she is so happy, healthy, and kicking butt day by day! It’s Addie’s journey and we’re just here for the ride! Frequent FAQs about Addie “What is Addie’s diagnosis?” Addie doesn’t have a syndrome name attached to her diagnoses. She has an imbalanced translocation of chromosomes 1 & 5, which has caused a whole bunch of different issues. Some of these include her previous SCT, hydrocephalus, epilepsy, legal blindness, deafness, bronchomalacia, developmental and cognitive delays, and a few other things. “I notice Addie’s mouth twitching in videos, is this seizure activity?” Yes, it is. Addie has Lennox- Gasteaut, a severe form of epilepsy that is not well-controlled by traditional seizure medications. She takes Epidiolex, a pharmaceutical CBD, to help control it. After hard seizures, it is not uncommon to see Addie’s mouth twitching.  “What are some of the ways Addie has proven doctors wrong?” When Addie was in the hospital for the first 6 months of her life we were told several times to prepare for her not to make it out of the hospital alive. She obviously showed them wrong! We were also told trach kids only ate by g-tube and Addie worked hard to eat by mouth up until seizures took that away from her. I’m proud of her for achieving that even if it was only for a few years. A doctor also told us straight up that Addie would never walk, yet that girl works so hard in her gait trainer every week in therapy.  “Why does Addie have a trach?” When Addie was born she had trouble breathing and was actually intubated for 3 months. We tried twice to extubate her (one was very traumatizing for me to witness), and she failed. Addie has bronchomalacia which means that her bronchial tubes are floppy. As a baby her bronchial tubes were so flimsy that when she would cry it would slam her airway shut, she would turn blue, and she would panic because she didn’t know how to make herself breathe. Addie’s trach helps her breathe and her ventilator gives her pressure to keep her lungs open. Although her bronchial tubes are much stronger, Addie has horrible lungs, so she still needs her trach to help breathe with greater ease. “Would you do it all over again if you had to?” Every single moment. God has such a unique purpose for Addie and she was meant for this world. To see the hundreds of thousands of lives she’s touched brings so much humbleness to our family. God knew exactly what He was doing when He made Addie. Not only that, but our pain and struggles and joy through this have made us into stronger people. Without Addie, our lives would be completely different. She has changed us for the better. “Ever had an emergency with her trach?” Oh yes. There have been times where we’ve had to do emergency trach changes in a restaurant or on the side of the road. It definitely happens! We never drive alone with Addie and always make sure we can access her quickly if we need. Thankfully, we’re pretty good at doing trach changes or anything emergent very discreetly, so unless you’re really paying attention to us, you probably wouldn’t even know there was an emergency. “Will she ever be without her trach?” This, we will never know. Part of me says no, but the other part of me says who knows. Addie is Addie whether she has a trach or not. She doesn’t let it define her, so don’t you let it define her either, ok?  “How is Addie’s hair loss?” If you have followed us the past few months you may have learned Addie has scarring alopecia. Between a prescribed shampoo, OTC shampoo, and essential oils, we’ve got her scalp definitely less inflamed. Still, the top of her scalp has lost so much hair. We are looking to see a second opinion with a new dermatologist, in hopes they can help her.  “You say Addie is blind but in videos it looks like she can see. Can she see?” Yes, Addie can see. To what extent, I’m not sure. We are also trying to see a new eye doctor. Her old eye doctor said she was legally blind and glasses wouldn’t help her, but the fact that she tracks people and things well, can choose items purposefully on her eye gaze device, and more tell us that she sees more than the doctor thought. “Is Addie able to speak?” Addie uses speech in non-traditional ways. She uses her eyes to choose phrases on her eye gaze device, a speaking valve to express her feelings, and her facial expressions to tell us what she wants or needs. I feel like we have such a special connection that I know what she needs, but I love that we use many different communication avenues for her to be able to express herself. To all of you that have followed Addie’s journey through the highs, lows, and everything in between these past 6 years, thank you. We are so thankful for all your love, prayers, and support. If you’re new here, I hope this helps you get more of a glimpse into who Addie is and why she’s so amazing.  For more on Addie’s Journey, don’t miss the archive!