Raising Children with Different Abilities
Meet the Martin family! My husband, Mark, and I have three kids. Blake, my step-son, is an intelligent and curious six year old. My son, Kaysen, will be turning four years old soon, and Mila, our newest little addition, is approaching her first birthday.
Kaysen has spinal muscular atrophy (SMA) Type 1 so when we found out we were pregnant with Mila, it was an instant concern that she might have SMA too, since we are both carriers of the SMN gene and already have one child with SMA. If both parents are carriers, then there is a one in four chance of their child having SMA. After much debate and heartache, Mark and I decided to have an amniocentesis performed on the baby to test for SMA in-utero. After weeks and weeks of waiting I will never forget that phone call: Mila was only a carrier of the SMA gene and did not have SMA. A huge weight was lifted from our shoulders when we got this news. I immediately phoned Mark, but it wasn’t long into our celebration that the guilt kicked in. How could we celebrate something that, regardless of the outcome, we would have loved that baby still? How could we let Kaysen watch us celebrate that Mila did not have SMA? It is still something that I’m not sure how to answer, but we just try to remember that SMA does not define Kaysen or our family. At the end of the day, Kaysen is perfect just the way he is and is literally the strongest boy we know.
Mark and I always told ourselves that we would never say no to Kaysen when he wants to do something and that we would always find a way. But let’s face it, there are obstacles everywhere and that might not be possible in some situations. We do not want Kaysen sitting on the sidelines and watching the world pass him by. We want him to be able to explore and experience these things along with his siblings, and feel included. We try to focus on things we can do together as a family that we all enjoy. Raising children with different abilities is hard, and honestly is something we are still navigating. Our day-to-day life may look different to some, and my family is something I wouldn’t ever change. One thing I find the hardest is that I have to carry two children with me wherever I go. I am just grateful that soon enough little Mila will be walking and I will be wishing I was still carrying her everywhere! One challenging area that we often experience as an interabled family is meal time. I have three kids who all have very different abilities and preferences when it comes to eating. Blake is your typical six-year-old who hates anything healthy. Kaysen is fed with a gastronomy tube, or G-tube, and I make all his puree foods to feed him. Mila has just begun her food journey, and is trying new foods and textures. Needless to say, our household at meal times is always a little chaotic!
“I am proud to be able to remind another family who may be reading this, to be gentle on themselves. Nothing about raising a child with a disability is easy. That was something I learned quickly. But I also learned that I would not change my family for the world. Perspective is a huge piece of the puzzle and every day I choose to celebrate my family and all their abilities.”
3 Ways to Navigate Life as an Interabled Family
- Be kind
Always look for the joy and the good in all situations. Leading my children with kindness is going to change perspective. The emotional and physical demands on caring for an individual with a disability can be taxing to anyone. Remember to be kind to yourself, embrace the strengths of each family member, and work together to enhance those strengths.
- Be patient
To do things a little differently, you have to adjust and always be open to adapting to changes. You have to advocate like crazy. Things can get hard, so don’t be afraid to take a step back to reassess the situation or to just leave it for now and come back to it. Don’t give up!
- Be truthful
Being 100% honest with my family and myself is the best way to go, whether it’s good or bad. Although you might have to leave out some information until your children are older and can more easily understand things, it’s always best to be truthful.