At times it seems as if there is an enormous gulf between raising a typical child and raising one with special needs. Until my second son came into this world, I as a special needs parent found it challenging to relate to parents of typically developing children. Although many of my friends and acquaintances were well-meaning, often their comments and words only made me feel more isolated and misunderstood. I can’t really blame them; I’m sure my responses to delicate situations were similar before our life was defined by special needs parenting. Many people feel uncomfortable or nervous in sensitive situations and as a result say the wrong thing. Relating to a special needs parent will take a lot of empathy and sensitivity, but don’t worry – you can do it!
1. “God knew you could handle being a special needs parent.” Or similarly, “God only gives special children to special parents,” and, “I don’t know how you do it!”
Frankly, I don’t know how I did it either! The first couple years with our eldest son, we were constantly in the hospital or a doctor’s office. He threw up around the clock. His oxygen monitor went off 10-15 times a night, signaling dangerously low oxygen levels. I averaged three hours of sleep a night. We had little help and no respite care at the time. The list could go on and on. The point is, I couldn’t handle it. Some things are too much for one person to bear. I often cried to my husband, “How much do we have to bear? I feel like I just can’t take any more!” In an effort to comfort me, people would offer up one of the above phrases. But all three of these assume that I am some sort of special, superhuman mom who even God believes can handle a lot! Let me put this debate to rest: I certainly am not special. Hearing these phrases only discouraged me, because they were wrong – I couldn’t handle it. I was falling more apart by the day. There were days when I cried all day because I didn’t know what else to do. I coped with our situation because I am my son’s mom, not because I am special.
There is a breaking point for everyone regarding how much they can bear, but that is why we have each other. We have friends to pick us up when we don’t have the strength to continue. Instead of saying one of the above comments to a struggling special needs parent, try saying, “How can I relieve some of your load? Can I do your laundry? I have a meal made for you; when can I bring it over?” or, “I would love to drive you and your son to any appointments this week.”
2. “He looks fine.”
When people saw my son outside of one of his daily retching episodes, they would say, “But, he looks so healthy and normal!” He “looked” just fine to them, so really what was the issue? But he wasn’t fine! He couldn’t eat or drink orally. He couldn’t breathe at night. He rarely slept. He couldn’t keep any food down even when it was administered via a feeding tube. But sure, if you saw him for only a few minutes, he looked just fine. Hearing, “He looks fine,” gives the impression that the problem being described isn’t really that bad. I felt like I had to prove the extent of my son’s sickness or delays. People often mean this phrase to be reassuring, but it really discredits the parent’s assessment of her child. Just because a child looks fine or healthy to you doesn’t mean there aren’t health, developmental, or behavioral issues. Many children have special needs that are invisible to the untrained and inattentive eye. Please don’t discredit what a special needs parent is relaying by saying, “But, he looks normal, fine, or healthy.” Rather, affirm the parent: “Wow, what you just described sounds like a lot to handle. You do such a good job of understanding, recognizing, and meeting his needs.”
3. “What’s wrong with her?”
Sometimes instead of “He looks fine” I would hear the polar opposite: “That is so weird,” and, “What is wrong with him?!” I’ll never forget one of the very first times I took my son out in public. He was 11 months old and had recently undergone a jaw surgery which placed metal brackets into his jaw bone. The brackets were connected to two long screws which came out behind his jaw just under his ears. I was shopping and the clerk remarked, “Oh, what is wrong with him?!” I was taken off guard and I honestly don’t even remember how I responded. I knew one thing for sure: nothing was wrong with him! My son’s body was formed differently, which makes certain parts of life more challenging. I don’t ever want my son to feel there is something wrong with him because his body was formed a little different from others. Maybe the clerk was only wondering why there were metal screws coming out of his skin behind his jaw bone, but saying words like “weird,” “gross,” or “wrong” in reference to a child is unkind and distasteful, especially when the child can hear you. Usually, phrases like this are said flippantly or with disgust. For a child to hear and then think that there is something wrong with her may lessen the value she sees in herself. If you are curious about the child’s condition, try inquiring, “Can you explain her condition to me?”
4. “I know, my child struggled with that, too.”
Parenting is hard, period. Being a parent of a special needs child is 10 times as hard. I am raising two sons. The eldest has special needs and the youngest was born perfectly healthy and has thus far progressed normally. My experiences raising them have been like night and day. There is nothing remotely comparable between the two.
It is our natural human tendency to relate things to what we know, what we have experienced. When someone is talking about a problem she is experiencing, I often find myself wanting to talk about my problems, too. When you feel the need to do this, save it. Save it for when you get together with other parents who have typical experiences. It was hard to listen to people complain about normal childhood sicknesses after hearing about our situation, as if they were actually comparable. I didn’t mind knowing what they were struggling with, but likening it to our situation was just offensive. Instead of the above comment, which can lessen the struggle of the family with special needs, validate their experiences: “Our daughter had reflux as a baby and that was hard. What you are describing sounds so much more difficult. You must be exhausted. Can I come clean your house so you can take care of your child?”
5. “Will he ever…?” and “When will she finally…?”
I always appreciated others expressing concern for our son. The problem is these types of questions are usually asked in a way that made me feel my son was deficient if he wasn’t able to lead a typical life in every way. And more often than not, people would ask these things in front of my son. I don’t mind people being curious about our situation, but I do mind when they talk about my son as if he isn’t there. I don’t ever want him to hear these comments and feel pressured to achieve something for which his body or mind just isn’t ready. I want people to accept my son for who he is (genetic syndrome and all), not for what he might possibly achieve or not achieve.
A good special needs parent is already well aware of the areas in which her child is delayed. Often we don’t know how things will pan out for our children, so asking things like, “Will he ever be able to talk?” can be disheartening and discouraging. Using “ever” or “finally” in reference to achieving something puts those things up as gods. Don’t get me wrong, I want my son to achieve as much as possible, but there are more important things in life than achieving every typical milestone. And I want my son to be okay in his skin, even if it is a bit different. When you are curious about something in particular, you might ask, “How is he doing with walking in physical therapy?”
It is impossible to think through every situation and scenario, but next time you are around a special needs parent try proceeding with as much sensitivity as possible. What has hurt or offended me might not bother another special needs parent. When in doubt, you can never go wrong with listening more than talking. Of course, we all say the wrong thing at some point. Don’t let your fear of saying the wrong thing keep you away. Special needs families need your support and love. If you are a typical parent, be humble enough to learn what may or may not be hurtful or offensive to the special needs parents in your life. And if you are a special needs parent, extend grace and patience to typical parents as they learn how to comfort and encourage you.