Wednesday, October 27, 2010

Ten things not to say.

I am the mother of a child with special needs. I talk to other parents of children with special needs. There seems to be an epidemic of sorts. A worldwide issue of things being said to parents about their special needs children; and not just general things. Things that should not be asked or said; especially in the presence of their child.
I will start with a few small lessons. When you meet a family, and they have a special needs child, assume the child can understand everything you are saying. Address the child if you want to know how they are. Think about what you are saying about them, and in front of them. Chances are, even if you think a child appears to have a profound disability and can't understand you, that they can.
Secondly do not refer to them as retarded. Never ever. Don't joke about someone being retarded, something being retarded and so forth. The word is hurtful, especially when it has, or will be used as a word to make fun of the child. And with that remember from this post that it is best received to use people first language. They are a person with a disability; not a disabled person.
With all of that layed out there this list below was a collaboration of my friend over at The MacDonald Family and I. They have a beautiful little girl with a disorder called Rett syndrome. I have enjoyed reading about her perspective, seeing her incredible faith, and the kind and encouraging words she has spoken to a mama who still feels a bit like a rookie wading through some of the special needs stuff.

Ten things NOT to say to a parent of a special needs child.

1."What is her life expectancy? Is she going to die from it? What is the prognosis?"
This question is one that is hurtful. Even parents who have a child with a fatal disorder aren't usually up for discussing their child's looming death with complete strangers. It also takes away the joy that we work each day to find in our lives.

2. "What's wrong with her?"
Perhaps this is more semantics, but I can think of about one hundred other things you could say that would feel kinder. Whether a child has something obvious like down syndrome, or just some devices that you've never seen before and are curious about, find another way to phrase your question. What does that device help with? What is his diagnoses? Can I ask about your child's special needs? Because, as a mama I don't feel like anything is "wrong" with my daughter. She is a normal child who just deals with things that aren't typical.

3. "If you had known would you have had an abortion/adopted her?"
I feel like this one is painfully obvious. But is has been asked of me (I wrote about it here in my what not to say to adopted parents post). And yes, my friends with biological children with special needs have been asked if they would have aborted. Don't say this. It's rude, unkind, and unthoughtful. It doesn't matter what the choice would have been, because our child is here with us now and we believe their life has value.

4. "I knew someone else who had that, and they were severely disfigured/died from it."
I have NO idea why our society is obsessed with horror stories. Someone is about to get married, have a baby, adopt a baby, buy a car, whatever; so people surround them with stories of the worst things that could ever happen. It's NOT HELPFUL. As a mother, I have gone through every worst case scenario there is. So if you want to tell me an encouraging story about it, or say something kind and uplifting, by all means. I don't need help worrying about my child's future.

5. "God only gives those children to special people."
This goes against what I feel like is the character of God (i.e. He did not want my child to have a genetic disorder). It's also untrue. In the child welfare system in the united states 30-60% of children have been estimated to have chronic health conditions. When you add in behavioral, emotional, and developmental issues, the number increases to 80%. The estimation for the general population of children with special needs is 12.8%. (Source.) Some of this is because dealing with special needs can be financially, physically, and emotionally draining. It could easily cause people to lash out at their children, especially those who are higher need. However it does also show that not all parents who have children with special needs are great at it.

6. "Whispering, Staring, Shushing, and quickly moving away."
These things are hurtful. Although I am writing a list of things I don't want you to say, I am okay with questions. Especially from children. That's how they learn. When you shush them or move them away you teach them to be uncomfortable with people who are different than they are. And when you do these things, you show me that you are uncomfortable with my child. My child is like yours in lots of ways. She is not scary. Treat her the same way you would a typical child.

7. "Those kids are always so...(happy, fun, compassionate)."
Maybe living a life surrounded by therapist, doctors appointments, and procedures makes children with special needs more compassionate. But not every child with down syndrome is always happy. Not every childhood cancer survivor grows up being empathetic. My child's diagnoses does not define personality. It's similar to believing all men, all women, or all of a specific ethnic, religious group, and so on, are the same. They aren't. My child's personality is unique. So are all of the other people who I have met with NF.

8. "I know all about ____ and here is what I know."
When my nephew was diagnosed with cerebral palsy a woman I worked with told me that if I had children they could have it too. When I politely stated it wasn't genetic, she argued with me. I walked away knowing that cerebral palsy is brain damage that can result from numerous different things. It is not genetic. It's nice to meet people who know about the disorder your child has; especially if it is something rare. However, don't ever argue with a parent about their child's disorder. I guarantee you they have spent weeks of their lives researching, reading, talking to doctors, and sharing with other parents. They know more about it than you do. And even if you are right, it's okay to give that parent a break from all of the know-it-alls in the world.

9. "You know what you should do..."
I can not count the number of people who have boldly stated the way to cure my child. Natural this that and the other, surgery, drinking so much water every day. Really, because of the eight specialist we see, none of them seem to know the cure. But average Joe out on the street has the cure that the doctors have yet to discover.
I will agree that there are often natural things that can help situations; foods to avoid, foods to eat, vitamins, and other things. I have a feeling though that if I did what everyone told me, I could end up losing custody of my child for neglecting her health needs.

10. "She looks normal. You can't even really tell there's anything wrong with her."
This one makes me want to respond with, "And you seem intelligent." I don't know if people are trying to make me feel better. Of course my child looks normal. Of course my child is beautiful. You don't have to convince me of that. But you telling me that you can't look at her and tell anything feels sort of like a trite answer of "Well at least you have that going for you. She can pass as normal." That doesn't help me to feel better, even if it makes you feel better.

This is the list for you. There are other things more specific to each child that people say as well. So please try to think before you speak. Think about how you would feel if that was your child. Think about whether you are close enough to the person for that to be an appropriate question. There are a few things on this list that our closest friends have asked, and know the answers to. They also know when all of our appointments are, how we are doing emotionally, and not to say things in front of our daughter.
And lastly, I have never begged for more readership before. But PLEASE share this. Post it on facebook, send it by e-mail. Post a link from your blog. Contribute your questions you don't like asked in the comments. Just do whatever you can so that as many people as possible can read this and become better informed.

Excited to see what you have to say,


  1. this is a great list! i might add these:

    the same as telling parents horror stories, just as hurtful can be the 'i knew someone with XYZ and they overcame it all to be amazing/great/win races, etc'

    i've also hated people saying 'i just don't believe that. i believe that with prayer, God will fully heal your child. don't listen to the doctors, they don't know anything'.

    sometimes faith doesn't bring full healing. sometimes prayer doesn't give us what we long for. i hate being made to feel as though i've given up on lia because we feel that God has answered us with a 'not on earth' for her healing.

    most importantly, if you wouldn't say it to an adult or if you wouldn't want it said to you of your child, or if you just don't know - DON'T say it! think about what you're saying before saying it.

  2. 2. "What's wrong with her?".....I agree. I hate that question. I like the whole "Why is there a massive birthmark across your kids neck and head" is a much better question than what's wrong with him.

    Also, I could fill you in on a few really good NF stories. My grandpa only had lots of bumps. Lived to be 82?? Fought in World War II, Retired from the military and started a farm. He had chickens, and a HUGE garden. He sold to everyone and was married to my grandma who was an amazing cook. She sold her pies to people.........

    There are other stories....heartwarming stories. NF can be 'just another thing'.

  3. I posted to my personal FB profile, as requested. Thanks for sharing this (:

  4. Love it and am reposting to my facebook page! I met Bridget because my daughter also has Rett SYndrome and more recently my son has Down Syndrome. Two Special kiddos which of course means I am "extra special" in Gods eyes;) Thanks for this post!

  5. For those of you who don't know me and about to read my comment: My name is Adrienne. I am 28. I conceived and had my son Bentley at 25. I denied all testing. My son, Bentley was born 8.14.08 and diagnosed with Down syndrome at birth. I have become an expert on his diagnosis in 2 years. :)

    I have been enjoying your posts. :) I will admit I don't share the same sentiments about questions as you though.
    As I mentioned above, I am an expert on Bentley's diagnosis. I know all the facts, figures, and statistics. If someone reads something about Down syndrome dated before 2000 it is extremely outdated. So I would MUCH rather share what I know- knowing it's the most current and accurate rather than people having false or outdated information.
    1. My child's life expectancy is about 55. He will most certainly get dementia if he lives that long. In the 80's my child's life expectancy was about 25. Isn't it beautiful that it has more than double in 20 years!?!? Celebrate the life of anyone with Down syndrome who is currently live and over 40- they beat some serious odds and must have had an amazing care giver.
    2. You're right- there isn't anything "wrong" with our children. "For you created my inmost being; you knit me together in my mother's womb. psalm 139:13. I do use words like "typical" and am OK with words like normal to describe children without special needs. I recognize that having an extra chromosome on every cell in your body is not normal. And I am OK with that.
    3.The answer is no. I love him the way he is. I wouldn't change him. And it's OK if you ask me. I am proud of my decision.
    4. I can see how this would be difficult. I did have a situation similar happen and I was upset.
    5. God gives children like Bentley to lots of people. But 90% of them choose to abort. It's special people who keep them. He is special. I am special. And I am OK with that.
    6. I just try to get Bentley to engage and then the people see that he's more normal than not and that he can interact. I bet you can get your sweet girl to do the same! I say, "The little boy is looking at you Bentley! Maybe he wants to be your friend. Can you wave at him?"
    7. I am OK with this too. With DS, the kiddos do tend to be more chill and friendly. (assuming they don't have a dual diagnosis). I celebrate that God has given them a special joy.
    8.yeah, I am with you on this.
    9. I haven't had this.
    10. I get this all the time. And I say, "Well you can tell. Look at his profile." I show them the markers that he has that are different. It's OK with me. When we take him to the panel to share with medical students our story and help them understand how to interact with patients and their families with genetic abnormalities the doctors point out markers. It really doesn't bother me.

    I am fully confident in his diagnosis. I believe with my whole heart that God made him this way. I am OK that he is different. I love every thing about him and celebrate his life. I welcome all questions, I do my very best to not judge. I was so ignorant until I had Bentley, and I am full of information that I delight in sharing.
    It breaks my heart that 55,000 children with DS in the US are aborted every year and if I can educate people about the beauty of my son and change even one woman's decision than it's all worth it. :)

    I just thought I'd share since you asked! And it's OK that we feel differently. There is not right or wrong way to feel. I think you're great! And I love the pictures of your sweet sweet girl.

  6. Wow. Have had every one of those things said to me. The one that got a neighbor slapped the bus stop.."What's the point in sending her to school? She's going to die in a few years anyway."

  7. our worst, besides "why didn't you have testing and just [insert horrible word here]", my grandfather who i was very close with passed away 2 months after anna's diagnosis. a woman came up to me and said "i'm so sorry to hear.... [i was expecting "about your pap" instead she said] about your daughter." response: "well we don't look at her like a problem, she is a very special girl and a huge blessing." the woman's response: "i guess to live with yourself you'd have to think of her that way."

    had we not been in a funeral home, i think i would have completely lost it on her!

  8. This post has inspired me to write my own list of stupid things people say in regards to having a genetic disorder. Thanks for sharing your life with the world. HUGS

  9. Man, I so get this. I vented about some of this things awhile ago on this post-

  10. As a mom of a full-of-life, sweet, handsome, perfectly created NF1 kiddo, thank you! I will be sharing this list. God bless your family! -M