I’ve been pretty frustrated lately. We recently got my son signed up with a new program that houses most of his medical professional needs in one place, which means lots of appointments with lots of new people. That in itself is frustrating, but it’s not the only thing. I’ve also been frustrated by the average, well-meaning person, who doesn’t know a heck of a lot about kids with special needs.
Instead of staying frustrated, I've decided it's time for me to step up and bring some light to the situation, because I know everyone means well, but there are some things that many people simply don't understand. So, my dear medical professionals, and average Joe's, here are a few things I wish you knew.
For the professionals and experts in our life:
1. Show us you are capable. If you claim to be an expert in kids with special needs, and you’re meeting my child without me or my husband in the room, and he gets defiant with you, I expect you to know how to handle the situation. It doesn’t instill a lot of confidence in me if you have to call us or come get us to defuse the situation. I understand that you need to inform us of the situation, but if he has shut down and stopped talking to you, or is arguing with you, and you can’t handle that, then you aren’t going to be able to give us advice or help when he is at his worst.
2. I get that waiting is part of life. For the most part my patience in that area is very strong. But when we’re the first appointment of the day and we still have to wait 10 plus minutes after our scheduled appointment to be seen, none of us are going to be very happy. Which means, if the meeting is so you can talk to my son and get information from him, you aren’t going to get very far, and the whole thing is basically a waste of everyone’s time.
3. I hate telling my child’s complete history over, and over, and over. My kid hates having to hear his history over, and over, and over again. I know it’s necessary, I really do. But don’t be surprised when I ask my kid if he wants to go wait out in the hall or waiting area while we discuss it. After all, the whole point of him being in your office is to help him move beyond the things he’s experienced in his past.
4. I don't appreciate your professional demeanor and way of speaking. I get that you’re a professional, that you’ve gone to school and have multiple degrees, and that you’re seeing us because we’re paying you to see us, but my kid doesn’t need to see you hiding behind your professional mask. He needs to see that you’re a human being, with human emotions, and human responses. My kid doesn’t want to sit through a business meeting, and frankly, neither do I.
5. Don’t ignore my kid. He is old enough to know and understand what you’re saying and why. Need to know something about him? Ask him first. If he refuses to speak, this is a great opportunity for you to show us your expert skills in dealing with kids who have special needs.
For the average, well-meaning person:
1. I have to pick my battles. I see you give my kid the once over when we’re out in public. I know he isn’t perfectly groomed. I need you to know that his appearance drives me crazy, but I would rather he act appropriately toward you and your children than have perfectly combed hair, and spotless clothes. We, as his parents, always encourage cleanliness, but it’s pretty low down on our list of things that are important to fight with him about.
2. What looks like very strict, helicopter parenting, is actually not. We remind our teen son about proper hygiene, personal space, and appropriate peer interactions more than other parents because if we don’t point these things out to him in real world situations, he won’t ever learn to recognize them on his own.
3. If we’re having a conversation and I’m not looking at you, I’m not being rude. But what you might perceive as an innocent group of kids laughing and having fun while playing Pokemon Trading Cards, I’ve detected a tone and pitch to my son’s laughter that indicates he might be taking advantage of the other kids and I may need to correct him.
4. I hate, hate, HATE, when you post about kids with special needs on social media. They all say something to the effect of “Kids with special needs are not weird or odd, they just want to be accepted like everyone else…” I want to scream whenever I see one of those posts. Not because it isn’t true, but because most of the people who post it have no idea what it takes for people to accept a child with special needs, which brings me to the next thing I wish you knew.
5. My son WILL do something you don’t approve of. I realize you want to protect your kids. Believe me, I don’t like it when my son does something that jeopardizes yet another relationship, and every time, EVERY time, my son goes to someone else’s house, I worry about what could go wrong, and I feel horrible when something negative does happen. I understand that you don't want your children around that kind of behavior, I will never make an excuse for bad behavior, but it breaks mine, my husbands, and my son's heart when yet another parent no longer wants my son in their house, or around their children.
6. I wish you knew how much I need you to love and accept my son. When the only friends my kid can keep for any length of time are the ones who don’t make good choices, then it becomes ten times more difficult for us as parents to teach him the difference between right and wrong. I know my kid swears at times, I know he will try to take advantage of other kids, but if you keep your well educated, non-swearing, well-groomed kids, who know the difference between right and wrong, who choose to do right more often than not, away from my kid, you deny him an opportunity to see that lying and stealing really are wrong. That it really is possible for kids his age to control their emotions, to choose the right thing even if it’s hard.
7. I have an ache in my heart whenever I see your well behaved kids. I know you hear the things my kid says when I’m not around, and I know you think he’s the kind of kid who will be a bad influence to your kids. But what you don’t know is how much I long for you to let your kids be a good influence to mine. I know there are parents out there who teach their kids to be responsible, kind, and caring individuals. Please let my son be around them. What you don’t realize, is that my son is the perfect candidate for your children to practice what you’ve taught them. If you’ve taught them to stand up for what is good and right, despite what their peers might think or do, let them be around my son while he can still be influenced.
8. Tell me when my child does something you or your children don’t like. I cannot tell you how many times a third-party person has come up to me and said, “Did you hear what happened with your son and so-and-so the other day?” Not only is this frustrating because I can’t problem solve something I don’t know about, but I immediately jump to the worst possible scenarios and assume my child did something so awful that you no longer want to have anything to do with him, or my family.
9. If you see my child have a melt down, or if he is scowling, please don't tell him he shouldn't speak to his parents that way, or try to make him laugh. I know this works for most kids, but the reason I've let my child walk off without scolding him for bad behavior is because he needs time to cool off. You interacting with him in any way only lights the fuse again and as soon as we are home and out of your sight, that bomb will explode.
So there you have it. These are the things I wish you knew. We have many, wonderful, caring people in our lives who bless us daily with how much they accept and love our son. I know there are families out there who get far less support from friends, family, and professionals. In no way am I complaining. But in this day and age when so many people talk about acceptance and inclusion, I think it's important for people to realize that talking about it won't make it happen.
Helping to raise a child who has special needs that aren't obvious to the naked eye has taught me that accepting, including, and loving someone, sometimes means forgiving them on a daily basis, opening your heart to them over and over again, and finding a way to show them kindness and love when all they can give you is harsh words. It is not an easy task, and that is something that people who tell us to accept and love everyone do not tell you.