What not to say to parents of kids on the spectrum (or any special need, really...)

Something I wrote up but stuck over on its own blog - too lazy to redirect.

What not to say to parents of kids on the spectrum 

(or any special need, really...)

Every now and then another adult says something to me about my kids, that requires me to take a moment and consider what that person really means. I try and remember to consider the intention behind what's being said, because sometimes the words hurt, even if the intention is to be kind or learn something. For those of you out there that have developmentally average kids (or no kids), here's a few things not to say to parents of kids on the spectrum, or with any special need, really.

I do not speak for all parents and caregivers of kids with special needs, but these are some pretty universal guidelines.

1. "Wow, you're an amazing mom. I'm not sure I could do it!"

This is one of those back handed complements and I have mixed feelings about it. The first part is kind thing to say to any mom- being a parent is hard regardless of your child's development. When I get this the most often though, is after mentioning I have a special needs kid. I often get this from people who don't know me very well -  not well enough that I've had a venting moment with them. It makes the assumption that parenting my child, because of his disability, is exceptionally hard. That might actually be true, but if I haven't vented to you about it, you really have no idea if it's any harder than parenting a child of average development. The last part is what stings- "I don't think I could do it". It basically says "your kid is so overwhelming, that only very special people could manage to raise him". You don't know that, for starters, and parents all over the world are often surprised to find themselves raising a child with special needs. And they rally, balls to the wall, learning how to manage schedules, educate, and advocate. It's done out of love for a child they've birthed or fostered or adopted. I believe every parent loves their child enough to want to do this. Some may not be able to due to barriers such as addiction, physical or mental health issues, of life circumstances, but know that any parent that can, will. You could do it. You may not want to, but you probably could. 

2. "Are you going to have more kids?"
 Not a problem for a casual conversation, but if you're asking in the context of "are you having more kids because yours is broken/disabled/hard", then it's a hurtful thing to say. I had a close friend tell me I shouldn't have more because of my Autistic kid, and didn't I know that "the risk was higher of having another kid on the spectrum", and she said "I couldn't do it". I can't tell you how hurtful this was- I cried the entire car trip home. This person knows my son - how amazing he is, how happy and bright and loving. How can you say I shouldn't bring more people like him into the world? Does she dislike my kid? Does she dislike kids on the spectrum? Does she think I'm a terrible parent and am doing a terrible job with the kids I have? Once I stopped crying and my anger and hurt subsided enough to think about what she was really asking me, it was probably closer to "You've told me this is hard. Are you worried about it getting harder?", and maybe even "I care about you, and I'm worried about your life getting harder".

If you have a friend that trusts you enough to vent about the hard times, they don't want you to use it against them later. They need you to understand that it's a way of developing a support system- just like every parent of a developmentally average child craves. I would never tell you that you shouldn't have another child because your developmentally average child has days that make it feel exceptionally hard to be his/her parent. Think about how upset you would be if someone said to you "You shouldn't have another baby- what if they turn out like your son/daughter? That would be awful". We might be able to laugh about it for kids that we know will grow out of tough phases, but what if it was a permanent feature of your child? It's a much different feeling. 

You can talk with your friends about their special needs kids, but don't assume that they should or should not raise another child that might have special needs. Their repose might be "I'm done having kids" or "My plate is full enough as it is", but let them be the one to tell you that they're done, for whatever reason. Don't assume.

3. "I would never drug my child!"
Here's the thing, you might. I'll give you the benefit of the doubt and assume what you really mean is "I'm really worried about the effects of medication on my child, and would avoid something I believe is dangerous at all costs". You know what? I would too! When you make this comment, you're telling that parent that you believe they're making the wrong decision. It's a painfully ignorant thing to say - it assumes that I'm giving my child something unsafe- that I didn't do the research. That I'm negligent. That his doctors are wrong. That I would rather drug my kid than parent effectively. That you know more than I do about these medications, about my child's struggles and needs, and about the best treatment options. 

These medications are not magic pills. They don't cure anything, and they can have side effects, but just like any medication, as his parents, we've assessed "risk vs. benefit". We've been through extensive testing. We've tried more natural approaches. We've done research. We've read books. We've tried exercise and sports. We've tried no TV for year. We've adjusted diets. We've adjusted our parenting. We've tried supplements. We've seen many kinds of doctors (and not doctors). It's not a decision made out of laziness, and you know what? Meds, sometimes, make a world of difference. For our kid it is the difference of our kid being in a classroom of his peer group (called "least restrictive placement"), vs. being a classroom where no one is his peer. It's the difference between a kid with an IQ in the 140s, who also has very little impulse control and zero social skills, in an environment where he cannot learn developmentally average social skills. For us it's the difference between 5+ suspensions a year and phone calls from angry parents, vs. making friends and being able to participate in a classroom discussion. It is literally the difference between him riding the school bus and chatting with his friends, vs. crawling under the seat with his fingers in his ears, crying. It the difference of being able to come with me to do groceries. Go to a friend's house. Develop healthy relationships, and allow him to learn how to function in every day society.  The trade off? He's lost his appetite. We have to remind him to eat. That's it, for us. Every child is different, but understanding that, you can see why every treatment plan is different. What works for one child - be it meds, diet, alternative medicine, etc,  might not help another. Sometimes meds are over prescribed, under prescribed, or not used at all, but please don't assume I'm not on top of it when it comes to my own child.

"But it's speed for kids!"
No, it's not. Not for these kids. Do some research yourself, and I don't mean reading articles written by like-minded people. I mean actual research. Ask an actual doctor what the risks are and how they interact with the brain chemistry of the kids who take these drugs before saying things like this. It's not the same reaction that neurotypical kids have. No parent who "drugs their child" is going to hear this and say "Oh you're right! I agree with you! No more meds for us!"- because they know that it isn't "speed", because they've educated themselves, and made thoughtful and educated decisions. 

I've heard the argument that it can lead to drug use later in life. There is a) no evidence of that (there have been studies)  b) can you imagine a teenager with zero impulse control around a peer group doing recreational drugs or drinking? Consider your "never ever" stance no meds when your kid is allowed to drive a car or be out in the world alone- when it's more than just sitting still in class.  

Parents who medicate their children are not lazy, or negligent, or uneducated. We know the risks, we understand how the meds work, and we work with doctors to assess risk vs. benefit. Don't assume this was easy decision, and don't assume it was made lightly.

4. "Have you tried [insert treatment/supplement/magic]? I knew someone whose kid tried xyz and they got better."
Here's something that parent's with developmentally average kids have a hard time understanding: I don't think my kid is broken.  I don't think he needs to be fixed. He might need supports in place- treatments that teach him how to function in the world like social skills classes, IEPs, speech therapy, OT work, etc. , He might benefit from medication that helps reel in impulse control or calm sensory sensitivities so that he can function in the world like neurotypical kids. He has access to whatever we can offer to help make his world better, but it's not the same as "curing him". I'm not trying to make him different - I'm trying to give him tools to be as happy as he can be.

Know that one of the greatest challenges we face as parents of exceptional kids, is neutotypical adults. It's adults not teaching their kids that everyone is different, and that different doesn't equal "bad". It's the assumption that my child should be changed. It's a lack of understanding, empathy, and support that all parents and their children need, regardless of ability. Don't assuming parenting my child is awful, and on the really tough days, listen without judgement. Ask me questions and be open to an answer that might not be what you were expecting.