This is a difficult piece to write, but it’s so important. Difficult because perhaps I had something to do with it. I say perhaps because everyone processes information differently, so this may have happened on its own, or the seed was planted by me in moments of exhaustion and frustration. Yes, kids with illnesses, conditions and disabilities often need more than the average kid. Of course, they do! I mean, why does that even need to be said? Unfortunately, that can bring about a feeling that they are a burden to others. Even if we do our best to make their lives and ours as “normal” as possible. Even those things the outside world can’t see. The fact is, our normal is different. So different that we need to throw out all our old beliefs and trust ourselves to create new ones. Help my child know it isn’t them. Somewhere along the way, someone taught me that kids were manipulators. They will fake things or exaggerate them in order to get out of something. You know: “Oh, they are just faking so they don’t have to.” Or “It doesn’t hurt that bad.” Acting on those ideas usually happens when we are at a low point of energy. It is easier to act on what we were taught than to think with a clear head. It’s a very skewed way of looking at your own children, especially when they have more needs than the average child. It makes us suspicious and leads us to question even the truth of the situation. It is our responsibility to deprogram what we learned so our kids don’t feel like a burden. Tips: If you know there is something more to the story, ask in a safe and inviting way. Our go-to is “Is that true or something you want to be true?” and “Tell me more.” Trust that their level of pain can be different from your experience. That goes for emotional and physical pain. Sometimes it’s about self-preservation. Raising a child with a health condition can be exhausting at times. We are mentally, physically and spiritually drained, which is the reason it’s difficult to not let our body language speak for us. Putting ourselves in our kid’s shoes and seeing a parent snapping and worn out while they complained about your symptoms, how would you feel? Tips: It is so important to talk to your kids and let them know it has nothing to do with them. Maybe you had a bad night’s sleep or a tough day at work. Put the focus on the cause (symptom/illness) and asking your child what would be helpful for them. Let them know you’re tired and not at your best. Remember when I mentioned planting the seed? These are the points I was talking about. It happens when we are human and most vulnerable. This is how the seed was planted in my own house. She needed help, and at times all I could give her was frustration because I had nothing else to offer. In these moments, when she was confused about what was happening and in pain, all I could do was sound exasperated, be emotionally drained from the stress it was causing, and tell her to try to sleep. I had no answers to make this go away. It was years before I learned that my daughter felt like she was a burden when anything medical came up. The first thing out of my mouth was, “Why would you think that!” As she spoke, my mind flashed back to my behavior, and I took full responsibility. Our kids need to see us take responsibility for our actions. Not only is it about being a good role model, but also letting them know that we’re not perfect, we make mistakes, but we are willing to make things right. That night we had a long and honest talk. I knew what I did was the best I could do at that point in time and that all I could do now was to reinforce the more helpful behavior. I’ve had to come to terms with myself for that behavior. Now that I know better, I do better. Balance growth with ability. That one night of honesty opened up a whole new way for me to view behavior. Yes, it made me more mindful and present with things I couldn’t see. In other words, be patient! But it also opened my eyes to the fact she may need to do the same. Breaking behaviors and cycles means changing what we think is normal. Being a parent doesn’t just mean caring for our child with disabilities or illnesses. It also means that it’s our responsibility to help them grow and learn. But how do we do this when they are unable to do “normal” tasks? Humans like feeling helpful; it’s our way of contributing to society and the opposite of being a burden. So we need to think creatively. These are some questions to start playing around with: If we are doing for them, how can they do for others? How do we teach them so that when they are able, they can care for themselves? If they are not able to reciprocate doing for others, how can we help them to not feel like a burden? What are the ways they could do for others that may look different from the norm? How this shows up in our house: When they can, they do. I ask them to help me. I saw a big difference when I showed them that I need help too sometimes, and not just with chores. We take advantage of times to experience life outside of our house. We teach them how to think things through, like, “If I wasn’t here, what would you do?” For our kids, learning the feeling of being a burden is complicated. Sometimes we plant the seed; sometimes they learn it on their own. What is important is that we acknowledge the reason why, even if it is painful, so it can be addressed. Be patient with them as they try to talk about it. They might not understand it themselves or even know the word, but they know how they feel.