Letter to Parents Blog Post (Link included)


I have SB and am in my 20s. Several months ago I wrote the following letter to parents on my blog. Tina has asked me to share it here. Please feel free to follow the link to my blog and I highly recommend checking out the tab called “For Parents” at the top.


I’ve been privileged to talk with and get to know many parents of kids with disabilities over the years. These conversations and relationships have given me insights and knowledge that I truly appreciate. I’d like to share with you a few topics that stand out to me as important as someone who has grown up with a disability. I have the utmost respect for the job you are doing as prarents and don’t seek to step on toes or overwhelm with a topic that perhaps you haven’t considered before or feels overwhelming. I want you to hear what I have to say and implement these concepts in ways that make sense to your unique situation.
Encourage flexibility. Obviously, some things need to take a higher priority than others. But please try to encourage flexibility whenever possible. Sometimes interruptions happen and we have to learn to adjust accordingly. Everything won’t go according to plan all the time and that’s okay. We aren’t living by some textbook anymore than anyone else is. I’m sorry that the professionals that surround us speak sometimes as if they forget that we are living real, imperfect lives. But learning to live in an imperfect world, set priorities, and make the best choices we can at the time is an important lesson that people with disabilities need to learn too. We also need to learn from life experience which sometimes means negative situations or making mistakes. This is just as important in our lives as it has been in yours. Travel and international experiences provide ample opportunities to learn and practice flexibility and deal with less than ideal circumstances. Travel and international experiences become more possible when flexibility is something that is being practiced consistently at home.
Look for creative solutions to problems. In the world of disability there are a lot of different ways to solve problems and they all have their place. It’s about finding the best solution at the time for the situation. Sometimes that means going for the expensive solution. Other times it means an inexpensive DIY solution or repurposing something to fit a different need. Creative solutions become even more important when you’re travelling whether that be domestically or internationally. You have to get creative when your typical solutions are not available or your new environment presents a new dilemma. The travel experience can also cause you to rethink and repurpose things you use on a regular basis.
Let your kid dream dreams and remember that the silly, crazy dreams of childhood lay the groundwork for our adult dreams. As much as this kills you there are other people who are not going to be as kind when it comes to hearing a kid with a disability dreaming a silly dream. It’s up to you to offer that balance and instill in them that it is good to have dreams because dreams become goals and goals are important. As hard as it is when you encounter one of these people try to remind them that your kid is far more like their peers than they are different and that having dreams is important for everyone. It’s also nearly impossible to predict what is truly impossible for an individual without getting to know a person. Seeing the world is a big dream and there are plenty of people who don’t realize it’s possible for people with disabilities to travel. Educate yourself as much as you can in order to support and encourage your kids to get out there and explore it.
It’s also important to create a safe environment for them to come home to. I know it breaks your heart in a million pieces to think that some people will say things to your kid that cause them hurt but you can help by creating a safe environment where they know that they are valued and appreciated and that what they think about their experience matters. Their perspective is quite likely somewhat different than your own because they are experiencing disability from a different vantage point than you are but please do what you can to honor their perspective even though it can be hard to relate to or hear at times. This will go a long way in helping them build confidence and a positive self image. You can also practice this concept with other people with disabilities that you meet. People who take the time to listen and show that they value my perspective are a treasure. While your kid is young and frankly throughout life it’s good to find people with disabilities and learn from them. Of course, you will be coming from a different perspective and that’s ok. We have a lot to share with each other. There are things about living with a disability that I’d love to share with you including practical life advice. I want you to know about how my disability impacts my life from my perspective and sometimes that means I’m not going to talk about medical topics. I need to be able to determine when I’m comfortable sharing various details. Non-medical insights are important even if you may feel frustrated by them at times. I’m much more likely to be willing to share when I see you valuing my perspective on the subjects I am sharing and building a relationship with me.
Remember that independence starts early. All good things take time and effort. Independence comes in steps and the initial building blocks of independence start when kids are young. Ultimately, it’s about the tone that you set. Having the expectation of independence and giving them the tools to help them be independent go a long way to opening the doors to many opportunities including international ones. You will likely be much more confident and they will be too the more independent they are in taking care of their day to day needs. Everyone needs help at times and it’s also important to learn when and how to ask.
There are plenty of times where you’ll feel like you’re the first or your kid is the first to do something or try something. It’s scary and overwhelming but do it anyway! Oftentimes, it’s a matter of the people in the situation haven’t seen a person with a disability do it, but that doesn’t mean there are none that have gone before you. Project confidence in the face of new experiences. Press on even if you don’t have that example in front of you. Remember, learning to take risks, be creative and try new things are important life lessons.
I hope you take these concepts and integrate them into how you are raising your kids. I hope you get to know people with disabilities who are already traveling and exploring the world. I hope you give your kids the tools they need to travel and explore the world. I’m confident that they will thank you for it someday. I know I’m thankful.


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