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.

A post shared by Stephanie W. (@mathewsbambina) on Oct 29, 2017 at 5:54pm PDT

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.

A post shared by Stephanie W. (@mathewsbambina) on Jul 20, 2017 at 5:06pm PDT

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.

 

A post shared by Stephanie W. (@mathewsbambina) on Sep 2, 2017 at 8:58am PDT

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.

 

A post shared by Stephanie W. (@mathewsbambina) on Oct 26, 2017 at 12:42pm PDT

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.

 

A post shared by Stephanie W. (@mathewsbambina) on Oct 27, 2017 at 10:10am PDT

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.

 

A post shared by Stephanie W. (@mathewsbambina) on Sep 23, 2017 at 9:24am PDT

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)

 

A post shared by Stephanie W. (@mathewsbambina) on Sep 1, 2017 at 7:39pm PDT

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.

If you see a special needs mama in the store/at the zoo/ wherever, please be kind. Always be kind.

This post on Achieving Financial Peace of Mind with a Disability Through ABLEnow is sponsored through ABLEnow, however all thoughts and opinions are my own.

Having a child with a disability always has our family thinking ahead. We wonder about things 5, 10, even 20 years down the road, and while those things are blurry for our family, they’re still important things to think about. As a mom, I always think of the worst- “What will happen to Addie if…” and I go down that rabbit hole. One thing that we definitely have needed to do more research on is some type of saving for Addie for when she is older. If something ever happens to us, we want to be able to make sure she is cared for and loved, which is why it’s perfect timing that I have been able to recently learn about a program called ABLEnow.

For so long, people with disabilities and their families couldn’t save for their futures because they feared losing their public benefits. I can’t even imagine having to worry about that for Addie and I’m so thankful we don’t have to now. Because of Addie’s medical complexities, she gets benefits monthly for nursing care, medical supplies (her little tiny ventilator alone is $13,000!), multiple therapies (speech, physical, and occupational)- I am literally FLOORED that had this been even just a few years ago, Addie could’ve lost her benefits if we put money in a savings account for her because an individual with a disability needed to remain “poor” in order to keep their benefits. It’s sickening and insanely scary. Bless the advocates who worked hard to change this and came up with the federal ABLE Act and the new ABLEnow program. There are millions of individuals with disabilities and so many of their families depend on various public benefits like income, health care, food, and housing through SSI, SNAP, and Medicaid. Now, these millions of people don’t have to worry, and I’m so grateful.

For the first time in public policy, the ABLE Act recognized the significant costs that occur when you have a member of the family living with a disability. These costs can include accessible housing and transportation, personal assistance services, assistive technology, and health care that is not covered by insurance or Medicaid. Now these eligible individuals with disabilities and their families can save and invest in an affordable and tax-advantaged ABLEnow account without worrying if their eligibility for certain benefits like Medicaid and SSI will be taken away!

Here’s why I love this so much: ABLEnow is truly empowering those with disabilities to gain more independence and have a better quality of life through financial security. For our family it means being able to put money aside for Addie’s future and not worrying that her Medicaid will be taken away (because I certainly can’t afford a ventilator, nursing, oxygen, every circuit piece to her vent, suction machines, and so so much more). It’s so huge.

ABLEnow is administered by Virginia529, the country’s largest college savings plan, which now has an expanded mission to meet the needs of individuals with disabilities. It is one of the country’s premier ABLE programs and open for national enrollment with accounts in all 50 states. You can go to the ABLEnow website to open and manage your ABLEnow account online.

Want to know more about ABLEnow and ABLE accounts? Check out the ABLEnow FAQS . What are your fears for the future regarding your loved ones with disabilities?