RSS Feed

I was born a cynic. No kidding, even in my baby pictures, I look like I am suspicious of the intent of the photographer. I have fought this cynicism my entire life, because while it has served me well in many areas, it also has the downside of causing me to negatively interpret others *cough Wes*. But a bright side (see? I’m already growing- I’m seeing a bright side!) is that while I see many others growing more cynical as they grow older, I have grown to be less so. Jesus has been faithful to grow in me the ability to believe the best about others, and to assume good intent.

So most of the time when I hear something that might sting my heart, I assume that the person is unaware of it and did not intend to hurt me or others. But I’d love to share with you some statements that I’ve heard many times that cut, but they are not so obvious as “what’s wrong with your kid?” I think this applies to any parent, but in my case, I am specifically talking about questions or statements made to parents of children with special needs. Let me also say, I don’t say this to cause anyone shame, because I know I’ve said most of these things to others too, not realizing how the words come across.

Seven things NOT to say to a parent of a child with special needs:

1. “He/She looks fine to me!”

I think the intent behind this is to somehow reassure a parent that their child is not viewed differently by a person, but what it can come across as is an expression of disbelief in the child’s diagnosis. This can be especially painful when it comes from family members, as they are usually privy to more intimate details of a child’s struggles than the general public.

2. He/She does great for me!

This is related but slightly different in that it can communicate that not only do you have doubts about the child’s diagnosis, but it can also express that the problems a parent is having with a child is actually the fault of the parent. I had a teacher once tell me “I never hear Josiah wheezing, I think he’s fine”, but didn’t know that Josiah’s asthma rarely shows up in wheezing, but in persistent coughing instead. What I heard was “he is fine and you are overreacting.”

3. Does he/she eat sugar/drink caffeine/get enough sleep?

Trust me that any parent with a child with special needs already struggles with blaming themselves for every difficulty their child has. Please also trust me that parents with these kids, especially kids with emotional or behavioral issues, have thought ad nauseam about their child’s eating and sleeping habits. There’s a strong chance that the parent is way beyond considering sugar and sleep and are well on their way into researching molecular level changes to diet. And the answer is likely to be “Yes. Sometimes she has sugar. Because she’s a kid, and I’m going to let her have a stinking cupcake.”

4. “You’re amazing, I don’t know how you do it”

What could possibly be wrong with being told that you are amazing?? Well, the problem is that what you are saying is they are amazing to be able to deal with such a difficult kid. And no matter how frustrated or tired or overwhelmed a parent might be, they do not want to hear that anyone thinks their child is difficult.

5. “God gives special kids to special parents!”

Here’s the deal- I believe God creates families and He knows what is best. So in that sense, yes, God knows what a child is going to struggle with long before they are born into a family. But the problem with that statement is that it implies that one, He only orchestrates families with special needs kids and the typical families are put together randomly and two, God has chosen that parent for that child because He knew they could handle it. This is bad theology (you can’t handle it. Neither can I. I also can’t handle my typical children. We stagger through the day, desperate for His guidance for every breath, no matter what the situation is.) and it sends a message of unfair burden, like it is not okay to feel angry or frustrated or sad about your child’s struggles. When I hear this, I feel a bit like Frodo, like I’ve been chosen to carry some ring and I’m not allowed to be sad or angry ever about the journey because BILBO AND THE HOBBIT WORLD AND ALL THE FAIRIES AND DUMBLEDORE ARE COUNTING ON YOU DON’T SCREW THIS UP AND THROW IT INTO THE WRONG VOLCANO YOU IDIOT. I probably shouldn’t use Lord of the Rings analogies, but you get my point.

6.”Have you read this awesome poem about Holland?”  http://www.our-kids.org/Archives/Holland.html

This is no offense to the writer of this poem. Really. It’s just that the chances are, yes, they have read the poem. They have read it because the second your child has a diagnosis, you get copies of that poem emailed to you daily, it comes in cards, it’s printed on pamphlets for therapists, and if you miss all that, it will come by owl. And I’ve found that people have two reactions- they either love it or hate it. For some people, parenting feels nothing like being in Holland. It’s more like being stuck on the tarmac, squeezed in the middle seat next to Tuberculosis Tom and Overly friendly Olga. For some parents, they have not reached a place where they can see meaning behind the struggle. For some, being encouraged to find meaning feels condescending.

7. “I’m sure he/she is going to be fine”

When someone says this to me, I hear “you are worrying over nothing”, and “I am done talking about this.” The thing is, “fine” is impossible to define and no one can be sure about anything. To be honest, people who speak in quick solutions and definitive terms don’t always feel safe to me.

So what are some things that are GOOD to say?

I love you.

Let’s pray.

Go take a nap/go shopping/read a book while I watch him/her.

You’re doing a great job.

I love____ about your child.

I’d love to know the best way to serve you. What are some ways that I could help?

Parents, what are the questions and statements that are difficult for you to deal with? How can Wes and I pray for you and your child?

Jesus_Special_Needs_Kids2

Advertisements

5 responses »

  1. Oh my goodness… Yes, yes, yes a thousand times yes!!! #2 truly rocks me to the core every single time I have been told it. I could write a novel on that one alone. My other favorite is this one: ‘just give me some time with him. I’ll fix him for you.’ This says: 1) you are inept. 2) he needs ‘fixing’ 3) I’m more awesome than you. I wish this one had only crossed my path once, but it has been said to me multiple times by 2 different people. Stupid, stupid, well-meaning people. I have to think that at least or I would lose all hope here!

    Like

    Reply
  2. What I love love LOVE about this post are the things at the end… things you CAN say to a special needs parent. This isn’t just a list of how “normal” people suck at loving friends with special needs. It’s also a helpful list of how to love them well.

    Like

    Reply
  3. Pls tell me I’ve never said:or done anything of these things. Seriously- I want to know.

    Sent from my iPhone

    >

    Like

    Reply
  4. I wish I could tell you how much I needed to see this list coming from someone else who lives “it”. Yes, to all of the above and then some! I know other people are meaning well, but when you are exhausted from living day in and day out with special needs, you don’t need to have these things said to you. I have a child with adoption issues and oppositional defiant disorder, a child with type one diabetes, and a child with Asperger’s syndrome. I like to think of Asperger’s as being an invisible wheelchair. People don’t see the disability just the odd behavior and they are SO QUICK to judge. Thank you for posting this!

    Like

    Reply
  5. All of this, yes. And with the HP theme, I feel like if I mess up or miss out on the right activity/therapy/friendship/underwater basketweaving group I’m turning Harry into Voldemort or at the very least, Snape. Also, I know I shouldn’t take it personally, but I do when I see the articles in my feed that hint (or say right out) that what my child struggles with doesn’t exist or is made up to cover for a lack of good boundaries, good diet, good exercise, etc. Also, the “Wow, [child] reeeallly wants it perfect, don’t they?” with accompanying “holy cow, that kid is uptight” face is super fun.

    Like

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: