If you follow me on Instagram, you may have seen yesterday about the unfortunate event that occurred to our family. We were asked to participate in an interview for a woman filming various non-profits around town so we could help represent a local organization geared towards children with special needs. If you’ve ever seen us out and about, you know that it’s not an easy feat.
Mathew had a prior engagement and I asked my mother-in-law if she would come with us for the interview. What you may not know about Addie is that it takes 2 people to drive her places because of her trach and ventilator. One person has to drive and the other needs to stay in the back in case she needs to be suctioned, she cries (because of her bronchomalacia she can quickly turn purple and lose oxygen when getting overly upset), her trach becomes dislodged, or her ventilator circuit pops off. Not only that, but we have to pack many things just to get out of the house. A bottle of oxygen, a spare bottle of oxygen, her ventilator, ventilator charger, pulse oximeter, ambubag, extra ventilator circuit, extra suction catheter, 2 extra trachs (1 her current size and 1 of a smaller size), a suction machine, and of course the usual diapers, wipes, and snacks. Being pregnant has also made things harder because Addie is heavy and I lose my breath a lot easier because I have less room inside to breathe. All that to say- if we go somewhere, it’s because we really want to be there or need to be there because it’s so much work.
When we arrived at the location for the interview to be filmed, I took Addie and all her gear out. It easily takes 5 minutes to get her in her stroller just so we can get to wherever we need because we have to load up her and all of her equipment. The woman who was interviewing us brought her children to the shoot (which I totally understand, because #momlife) but her children were constantly staring at Addie. I brushed it off because children are curious and I tried to not let it bother me. That was until one of the children made not one, but TWO ugly comments about Addie’s appearance. Again, I understand it happens and children don’t generally have tact nor do they know how to react to a child with special needs. But, I was entirely taken aback when the woman never said anything to her child such as, “Honey, we don’t say ugly things to people.” She never even apologized to me or said, “Oh I’m so sorry. My children have never been around someone with special needs. I apologize for what he said.” Nothing. I was so offended that I asked if I could interview first because I needed to leave soon (which was true), and quickly did the interview.
As soon as I got into the car with Addie and had all her stuff unloaded, I lost it. I got into the car and just bawled. I bawled because I couldn’t believe the mother did nothing to acknowledge her child’s comments towards Addie, especially because we had gone through so much effort to be there on a particularly busy day. My mother in law happened to be there and drove back to the location and talked to the woman about how hurt we were, and as she did, I made this video on Instagram stories:
I had SO many of you guys comment and tell me you would be more conscious about talking to your children about those with special needs. Many of you also said you realized you needed to take action and talk to your children, but didn’t know how. Some also asked what exactly you should say in a public situation, and so many more of you asked me to blog about this to help bring awareness. So…here I am. Now let me mention- I’m no expert. I’m learning as I go along this journey, so if you’re a special needs mom and you have input on how you personally would do things, I’d love to read in the comments.
To the mom unsure how to approach my special needs daughter,
I see you. I see you and your children around town. I see your stares. I also see your curiosity. I see your wheels turning as you try to figure out in your mind if you should acknowledge us, quickly put your head down and walk away, or gaze away as fast as you see me noticing you. I see your child who is curious too and is trying to ask you questions. You’re frozen.
I want you to know something. I want you to acknowledge us. If I look your way and smile, I want you to smile back. And if I’m not smiling? Smile at me anyway because our family might be having a particularly rough day. I’m ok with you and your child having questions. I was once just a woman without a daughter that has special needs and I used to be curious too. I GET it.
If your child is curious, please don’t shush them. Have them ask you their question, and feel free to come up to me and ask it yourself if you feel like your child may not be tactful or kind. Please introduce yourselves and acknowledge my daughter…because SHE IS A PERSON. Plus, she loves when people come up to her and smile and want to get to know her. Please don’t act like my daughter isn’t there. It hurts my heart and it’s insensitive. Treat her as kind as any other 3 year old.
Curious about her trach? I’m cool with that. You can ask me, “Why does she have that tube?” I’m happy to tell you that Addie can’t breathe on her own and her trach and her ventilator help give her breaths. I’ve had many children ask me about it and I will say I appreciate their faces of concern when they realize she can’t breathe on her own. Their compassion does my heart so much good because I know there are still sweet people in this world that show concern and care for my sweet girl.
Wondering why she may not look like a typically developing child? My daughter has hydrocephalus and has epilepsy. She also has vision deficits and has a cochlear implant because she used to not be able to hear. You may ask me kindly, “Can you tell me more about your sweet girl?” or “Is it ok if I ask you about your daughter?” Chances are I’ll say yes. I’m happy to tell you more about Addie and the 10 months that she was hospitalized. How we almost lost her several times in the middle of the night. How my baby has gone through more surgeries than I can even count (because honestly, I’m done counting.) How we’ve made amazing friends in the medical field and how Addie has multiple therapies DAILY so she can be the strong girl she needs to be. How doctors told me Addie would not be able to do so many things, yet here she is, kicking ass and taking names (sorry- there’s no better way to say it.) How I quit my job as a teacher to be by her side for 18 hours a day in that hospital. How I would sleep by her bed in the NICU after surgeries even though we weren’t technically allowed. Maybe I won’t divulge ALL of that in one sitting or in the store, but I’ll tell you the Reader’s Digest version for sure.
Here’s what I’m not ok with though- I’m not ok with being ignored. I’m not ok with you not correcting your child if they say something rude. I’m not ok with you brushing off rude remarks as if they’re meaningless. I’m not ok with stares without a sweet smile quickly coming after.
Disabilities cover a wide range. Some are obvious like Addie who has a physical disability, or a child with a visual impairment. Other disabilities may be more “hidden” such as children who have learning disabilities or are on the autism spectrum. I want you to share with your child that no two people are the same and God made everyone special and unique. I want you to share that a disability defines no one. Just because my daughter or another child may have special needs, these kids are just like you and have feelings, likes/dislikes, strengths, and even challenges. I want you to share that children can be born with special needs or they can become disables from an accident or an illness, but they can’t “catch” it from my child. I want you to tell your child to be sweet and kind to my girl, and that she would love to be their friend. Your child should also know that children with special needs can do lots of things that they can! Addie plays soccer and is about to start cheerleading in the new year- how cool is that? She just may need help or adaptive equipment to help her, and that’s ok! I would also tell you, try to use clear, respectful language when talking about someone with special needs. “She has that tube because she can’t breathe on her own and needs help” is enough information for most children to get the concept of why Addie needs her trach. PLEASE make sure that you talk to your child about name calling or rude comments is NEVER acceptable and it hurts Addie’s feelings.
Here’s what else I want you to know, especially if we’re already friends. Invite us over. Sure, it’s a lot of work, but boy, does our family love to be invited to things. Even if you “don’t think” we will be able to join you, it means the WORLD to us for you to have us over for dinner, board games, play dates, and birthday parties. Addie doesn’t go to school and is often forgotten because she isn’t around her peers much. She wants to have more friends, she just doesn’t have many opportunities. Thankfully, soccer and cheerleading have changed that, but we still find ourselves forgotten sometimes. Heck, invite yourselves over too! Mathew and I both work from home and we want you to come over! We love visitors and Addie always enjoys snuggling and playing with friends.
Love, Stephanie (aka Addie’s Mom)
There’s so much more I’ve surely missed, but I hope this is the start to some beautiful conversations between you and moms of special needs kiddos. If you know someone that has a child with special needs, reach out to them. Start a discussion and ask how you can learn to be more loving and accepting and how you can teach your children to be the same.
If you are interested in learning more about Addie and her story, make sure you add us on Instagram and Facebook for daily updates.
I am a teacher of students with multiple disabilities fir almost 30 years. I love my students as students first then I can see what they need. I have age appropriate peers in my class ( self-contained) to become friends with my students ( as know as my kids). I teach the peers how to talk with my students and ask them questions. I answer their gen ed peers questions and they learn! But if I heard a bad word about my students from another peer … I would use it as a teaching moment and also have them apologize just like any other Class / peer. I have had more problems with adults than kids.
So thank you for advocating for Addie and sorry o know the Mom / interviewer did not know what to do. But if Addie was “regular” an apology would have happened.
Lots of love!!
Very well said
bless your beautiful family
My child also has hydrocephalus due to an illness when she was very small. She also has learning disabilities. However my sweet girl looks just like every other 17 year old. Many of her peers either ignore her or prey upon her vulnerability because she doesn’t know they are mocking her, so I know how you feel. Thanks for putting into words what’s in my heart. God bless you and the “pink ninja”!!
Very well written. It takes more less effort to be cruel than to be kind, unfortunately and I despair of how ugly the world can be. People like you and your family give me hope again. Addie is a very lucky girl girl to have a mum like you, and Lawson will be the best little brother ever.
You have a beautiful way of conveying the meaning of kids with special needs. I applaud you from afar. If I lived nearby, you would have so many invites you surely would have to turn some down. I’ve watched your journey via Instagram. You and your hubby are awesome parents. I believe God chose Addie for y’all and vice versa. You guys are on my prayer list. Hugs and prayers from a Mimi in East Texas who gets it!
I have just read your post and I cried the whole time, I just cant imagine a mother letting their child talk like that without saying pardon me a minute, and then talk to her child about being rude. Thank you for teaching parents how to teach their children about others whether children or adults that aren’t like them, I taught my children & now I am teaching my grandchildren about others. Because my mother was made fun of and I stood up for her. I love reading about the adventures of Addie & now with you expecting a boy it is sooo wonderful. Keep smiling you & your husband are fantastic parents & Addie is so precious love her smile. GOD BLESS YOU ALL HAPPY THANKSGIVING
This is such a good post! We have been very very fortunate that we have almost always received a positive response from strangers to our son. I am actually so so impressed with parents and their ability to be kind and help their children understand even if it may be uncomfortable.
I had one run in with a little girl who was not too kind and honestly I left the situation angry at myself. She was young and no matter how i tried to help her understand that while my son is different he’s just how Goad made him. She responded several times unkindly and I really wish I would have used the opportunity to remind her that she might be hurting his feelings. Truely and thankfully I think he was oblivious, but it won’t be long until unkind words really do hurt his feelings. Her parents weren’t within earshot and I know them well enough to know that they would have corrected her BUT I think the importance is teaching people and their children that people with special needs or people who look different have feelings too.
I had this experience yesterday when my daughter was made fun of because she uses a cane. When I watched your IG story, it tugged on my heart – so I blogged about it earlier. I appreciate you and your words so much! You are an amazing mom to that beautiful ray of sunshine. I stand by you in wanting to educate kids and their families! Happy Thanksgiving to you and your family. XO
I don’t know if you have ever hear of the blog This Little Miggy, she is on instagram too. She has a daughter with limb differences and started weekly series “special needs spotlight”, in which she interviews a family/people with special needs both visible and invisible. I absolutely love as she always asks the parents how people should approach or react to them and it has been so educational and eye opening for me, and I am now better qualified to teach my children how to treat others. I know you were worried about posting publish on this, but these types of posts are so important!
I am a mom of a 25 year old special needs daughter with trisomy 8 mosaicism. We to have faced the years of not just children but teens and adults too stare and talk. We have had actually had people make fun of the way she looks and walks. As her mom I am just thankful she learned to walk! Trying to explain to people why God made us all different is sometimes hard and avoided by some. My daughter Taylor has 4 sisters and it really gets under their skin and they become very angry when something happens in public. I will say this, I feel God picks certain parents to be the parents to these precious gifts because most could not handle it. Having Taylor has brought my husband and I so much joy and love. She loves us no matter what. They are truly a blessing that most are not gifted. It is hard on a family with long hospital stays and many surgeries but so worth it.
I loved reading this and hearing about your beautiful family, Addie, and your experiences. My sister in law is 28, and has severe cognitive disabilities from complications during pregnancy. She is one of my favorite people in the world, and a beautiful woman inside and out. However, I’ve personally witnessed how ugly some people, adults and children,can be when encountering someone different than themselves. my sister looks physically typical for the most part, but has some more obvious mannerisms and behaviors that some people recognize immediately and understand that she has special needs. However, because her disabilities are solely neurological deficits and conditions, many people mistake her behavior, child like mannerisms and speech as her being rude or disrespectful. Ive witnessed waiters or other adults accuse her of starrinh too much or call her rude, stuck up, and mean. When in reality, she is unaware of her intense staring or other social norms that she is not capable of performing.
It’s amazing how rude and abrasive some adilts have been yo her as they’ve accused her of giving someone the stink eye or having resting biotch face.
I’ve taken it upon myself to advocate for her and explain her to strangers or employees helping us, and most people are much more receptive after told how unique and special she is.
I feel very blessed to have her as my sister in law, and particularly that my daughter will grow up with better awareness and understanding of diversity and how special and unique every single person is.
My husband has coached special Olympics for nearly a decade now, worth the same group of boys, who are now young men. And in my experiences helping him with that, I too, have learned so much and have loved seeing these boys grow up and learning so much from them, and their families.
Our daughter is just now old enough to help out during practice and is beginning to develop special friendships with some of the boys. I think our involvement in special Olympics is one of the greatest blessings in our lives and I can’t Imagine not always being involved in this organization.
I think.parents need to lead by example and be inclusive, respect and helpful towards everyone. I used to be afraid or hesitant to engage or ask those questions, but now uce learned that reaching out with kindness could brighten someone’s day. So I try to ddoe that as often as possible.