Many, many moons ago, I took my first color guard director job at a small Catholic high school in Indianapolis. I had eight girls, most of them brand new, and exactly zero budget. I spent so much time trying to creatively give that guard the world – from spray painting old, beat up rifles in my dorm room, to purchasing make up and colored hair extensions with my own (also non-existent) money.
That program, and the girls who participated in my first real guard, continue to hold a special place in my heart. Those ladies were dedicated. They WANTED to do well so badly, and they worked harder than almost any other group I’ve had since to achieve their dreams.
Today’s guest blogger, Olivia, was on that guard. Now though, instead of spinning flags, she’s married and a SAHM to her two-year-old son, Liam (just writing that sentence makes me feel ancient). Liam was born with Spina Bifida, so today Olivia is sharing some of her experience as a special needs mom. She’s one strong lady!
Olivia Schuh is a stay-at- home mom. In her spare time, she also goes to school. She is currently a sophomore at Ball State University online, and will receive her Associate’s Degree in General Studies. Her next step is to eventually be a music therapist with a concentration in neurology. Her son, Liam, was diagnosed with Spina Bifida – a rare condition that causes the spine to be outside of the body. She is also married to her husband Dylan. She loves spending time with her family and friends and enjoys having a good time!
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Being a special needs mom for almost three years, there are a few extra things that a “normal” mom doesn’t have to do for their child. They say that God doesn’t give you anything that you can’t handle, and it is completely true in my son’s case. Here are the top five things that a special needs mom most likely does for their child.
1. You watch them nonstop.
While this is true for the “neurotypical” mom, it is especially true for a special needs mom. In Liam’s case, I have to watch if he puts a piece of food that is too big in his mouth because he WILL choke. In other cases, the child could stop breathing or they may engage in self injurious behaviors.
2. Whether you like it or not, you will talk about your child’s bodily functions.
I am good friends with another mother of a special needs child and you wouldn’t believe how many times the word “Miralax” comes up! Unfortunately, it’s how our kids relate with one another. We talk about our sons’ medical problems to vent our frustrations and just check in with one another.
3. You will have people ask you strange questions and constant staring.
It seems like every time we go out to a public place, eyes are always on us (and no I’m not paranoid). For example, when we went to the Children’s Museum, there was a mother, father, and their son, about the age of 9. The son was interested in Liam’s wheelchair and the parents were encouraging him to get away from Liam. However, I stepped in and told the boy that he could look and that there is no need to fear him. He is just a normal kid, his legs just don’t work. I don’t blame the children, I blame the parents for not properly teaching their child about special needs children. Instead of embracing them, they fear them and that’s where the bullying comes in. It is not only these type of people, though. There are people (and I know they mean well) that give Liam unwanted attention. What they don’t realize is that people who are handicapped or in a wheelchair just want to be treated the same as anyone else, just a simple smile or hello will do. Just think about it, if Liam wasn’t in a wheelchair, I guarantee you that he wouldn’t be getting as much attention.
4. You need a good support system.
With everything going on with your special needs child such as doctor’s appointments, surgeries, and tests, you need a support system that will always be there for you. It also doesn’t have to be family. I am lucky enough to have my family but I am also lucky enough to have my son’s five therapists. One of them has been with Liam since he was 10 weeks old and she is like family.
5. You need to advocate for your child at all costs.
Sometimes, even doctors and nurses are wrong about your child’s medical needs. With Liam’s doctors (he has over 20), each has a different opinion on how to help your child. Right now, we are dealing with his nutrition and weight. What they don’t realize is that they don’t live with Liam, I do. I know everything there is to know about him and I know what’s best for him. Sometimes, people agree with everything the doctor says because they are a doctor. Sometimes, you have to stand up for your child’s needs and say no, that this treatment isn’t the best for my son.
Being a special needs mom is one of the hardest things that I have ever done. I would never give it up for the world because he means so much to me and he is such a tough warrior. There is no one quite like him and he is truly special and makes an impact on everyone he meets.
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Give Olivia some love by leaving her a comment below, or on the Cotten Tales Facebook Page!
This really hit home for me. I used to work in a middle school with children who have disabilities, one has Spina Bifida. So I am somewhat familiar with it. But what really hits home is that my unborn child is at risk of developing Spina Bifida because my fiance, her Father, was born with Spina Bifida Occulta (a very mild form) and one of the medications I take and cannot go off of affects my absorption of folic acid, which puts our little one at high risk. I’m actually supposed to get the blood test done tomorrow that tests for Spina Bifida.
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Wow! Olivia’s post is super timely for you, then. Sending you and and your sweet baby all the positive thoughts tomorrow. Hopefully everything goes well – I can’t imagine how stressed you must be! 🙁
So beautifully written, Olivia! I hope you print a copy to save for Liam! Just wanted to let you know how much I value our friendship and love watching our boys together. Seeing you and Dylan together with Liam is always so refreshing and heartwarming. He’s a lucky little guy. It’s a difficult journey, to say the least. I know you wouldn’t have it any other way, and neither would I! Wishing you love and sleep, my friend!