Hello, my name is Rachel Gross. Some of you may know me already, but if you don’t, allow me to introduce myself. I am 25 and was born and raised on Long Island. I was diagnosed with Nemaline Myopathy around my first birthday. I have a trache, g-tube, and use a wheelchair to get around. I live a mostly independent life with the help of personal care assistants and am planning on moving out in the near future! Living with NM, I’ve learned a lot about myself and about society as a whole.
Being disabled gives you a unique perspective on life. So, here are 5 tips that new parents may find helpful!
1. Language is Important!
When you have a disabled child, the language you use around them is super important. As a child, I remember closely listening and observing everything around me. Children are impressionable, we know that. You may not realize it, but your child is listening to everything you say. The first things they will learn about themselves, they will learn from you. When you’re talking to or about your child, it’s important to keep this in mind. Be conscious of how you describe them. Describe them in a positive way, not negative. Use words that will give them hope, not doubt. Encourage them and empower them.
2. Don’t Compare Your Child to Other Children
We are always comparing ourselves to other people. It’s human nature. It’s common for parents to compare their children to others, as well. The thing with having a disabled child is that there is no other child like them. Your child is their own person, with their own unique set of needs and abilities. Comparing your child will leave you wondering why they aren’t able to do certain things or aren’t hitting the “typical” milestones. Comparisons will leave you feeling disappointed and defeated. Your kid has unbelievable potential. They can achieve many things and live just as much of a full life as any other kid, it just might look a little different!
3. Advocate, Advocate, Advocate!
Being disabled means that throughout our lives we are faced with many challenges. Society was not built with disabled people in mind, so we are constantly advocating for ourselves so we can live our lives just like everyone else. As parents, you will be the ones advocating for your child. Lots of people will be quick to write your child off, and lots of people won’t even try to help. This includes medical professionals, the very people who we entrust with our futures. Don’t let them dictate your lives. Advocate for services. Advocate for therapies. Advocate for equipment. Advocate for your child to have appropriate accommodations in school. Trust me, it’s worth it.
4. Listen to Those Who Have Lived Experience
When your child was born, you were thrown into a reality that you were not expecting and were nowhere near prepared for. You were probably feeling lost and confused, so you sought the guidance of other parents who have been in your situation, and that’s great! Having a community of people that understand you, and who you can turn to, is something special. But, it’s important to also connect with adults who live with NM, as well. We have lived with this condition our whole lives, and we can provide a unique perspective that you won’t get from other parents. We’ve gone through countless surgeries and procedures, and we’ve experienced long hospital stays. We know what your child is going through, we know what that all feels like, and we want to help others navigate through this life.
5. Don’t Hold Back
If I could only give you one piece of advice, it would be to not let NM control your life. Sure, this condition will present many challenges. But, with a little bit of planning and creative thinking, your child will have a surprisingly ordinary life. I’m in my mid-twenties now, and I can confidently say that my childhood really wasn’t that different from others my age. I remember playing in the street with my neighbors, I remember going to Disney with my family, I remember singing in the school talent show in elementary school. I’ve been on planes, trains, and boats. I’ve been jet skiing and horseback riding. I’ve even been on rollercoasters! I’ve traveled both with my family and without. I went to college, where I lived in a dorm for four years.
I know these things may seem impossible, but trust me, they’re not! Life is fleeting and beautiful, and we must take advantage of the opportunities we are presented with. I hope these tips provided you with some perspective and give you some hope for the future!
If you’re interested in following along and seeing what life is like for me, follow me on Instagram @riizzyray!