5 Things You Should Not Say to a Special Needs Parent (and 5 Things You Should!)

things you should not say to a special needs parent

One of the downsides of being a special needs mom is that we’re subjected to a variety of comments as people see fit. Some are well intended (but still kick us in the gut) and some are downright thoughtless. Every parent has their own hot buttons. Here’s my version of “5 Things You Should Not Say to a Special Needs Parent (and better yet “5 Things You CAN Say!”)

5 Things You Should Not Say to a Special Needs Parent…

“How is h/she doing cognitively?” Would these people ever thinking of asking a parent of a so-called typically developing child that question? An IQ test or age appropriate academic skills are not a reflection of our children’s worth as human beings.

My son will be 13 in May. He’s still not reading or writing. He does love to cook and knows more Spanish than I do. He’s smart and very intuitive. He speaks quite well. He’s the kid that teachers and camp counselors take me aside to tell me privately “I know I’m not supposed to say this but he’s my favorite!” He’s impacting people around him far more than many of us ever will.

“I’m sorry.” I just got this one last week for the first time in awhile. I simply responded, “There’s nothing to be sorry about. He’s a JOY.”

“Have you disciplined him/her biblically?” I started to get this around the same time I discovered what sensory processing issues were. My son just couldn’t handle crowds without getting hyper and acting out. As much as I wanted to be hospitable and stand around talking after church, it just wasn’t happening. I began to retreat into my shell.

“That’s so retarded.” It pains me how often I’ve heard this around church circles. In recent social media I’ve also heard terms like “celebutard” and “glutard”. It isn’t funny. (Admittedly I’ve probably used it myself a few times in my life. Now I know better. It’s one of the many lessons my son has taught me.) It hurts and demeans our children and us. There are so many other words in the English language that could be used.

“Did you know when you were pregnant?” It was suspected but the only option available to confirm it at the time was amniocentesis.  Being pro-life, I wasn’t willing to take the risk. And if I did know, I still would have carried him to term. 

 

5 Things You Should Say To a Special Needs Parent

Say “Congratulations!” when their baby is born. I still remember the one person who did. She was a special needs mom too.

“How Can I Help?” If they’re anything like me, they may just mumble “thanks”  and not be able to come up with concrete ideas. Offers to babysit are wildly appreciated. Offer to pick something up from the store for them. Stop by and visit. Some of us are really housebound and starved for company.

“Can your child come over to play?” A sad reality for me over the years is we’re just not included in a lot of things and unfortunately sometimes I can see what we’ve been left out of on Facebook. Yes, it will take a little bit of effort to interact with our kids. They are slower to process. They have language and communication difficulties. Sometimes they are going to say and do inappropriate things. But how will they learn to interact in appropriate ways if nobody wants them around? Try making a set plan with a start and finish time so everybody knows what to expect. You just may find that you’ll receive a lot more than you’ve given.

“Why don’t we do breakfast/lunch/coffee?” Many special needs parents (including me) are heavily connected on social media channels. Given our hectic and stressful schedules, it can be the only social interaction we get. But nothing replaces real life fellowship with people who live in your area.

“I’d like to stop by.” When I was a new mom at age 29 (to a neurotypical kid) I was a little shell shocked and overwhelmed after being a working person for 10 years. I didn’t know a thing about being a mom. (I am a little embarrassed to write this!) I will never forget a sweet woman from church (she left a bank executive job to come home and was struggling with infertility herself) who called me every week, took me out to lunch often and was just a real friend. With social media we’re so connected in many ways but still so very disconnected. We need real life friends and interaction.

Noah’s Dad has compiled a great list of positive things you can say to someone who has received a Down Syndrome diagnosis (or really, any prenatal diagnosis).

In writing this I have to admit to being reminded of times that I’ve spoken thoughtlessly. I’m on the journey too. 

 

Comments

  1. Rebekah Jones says:

    Not say: So what’s it like have a handicapped child?

    Do say: I’d love to get to know your child better and then when he/she is comfortable with me perhaps I could stay with him/her one evening so you and your husband could have a date night.

  2. Great post…I wish a lot of people would understand what is “right” and “wrong” to say to parents of special needs children. When I was little, I used the “r” word in front of my friend Lori when we were discussing a show on TV, whose sister is special needs. I didn’t mean it meanly – I was ignorant and young. I felt so terrible and to this day NEVER use that word and remind people when they do use it, what they are saying. #bb100
    Dana recently posted…Italian Wedding Soup – Gluten Free!My Profile

  3. I’ve heard some of those things before and it angry’s me. I’ve worked in the Special Olympics in bowling and that has been some of the best days of my life. I could visit with the kids all day long. They make me laugh and sure did enjoy bowling. Whether they hit a pin or not.
    Tammy recently posted…Worlds Cleanest Pet Bed: Wash ‘n ZipMy Profile

  4. Thanks so much for your great post and including our blog post on yours! Keep up the great work. We appreciate you!
    Noah’s Dad recently posted…By: Lisa MooreMy Profile

  5. Thank you for writing this post. It is a great reminder to think before speaking.

    Blessings,
    Angie
    Angie recently posted…Boost Your Blog in 100 DaysMy Profile

  6. Marya, I love that you wrote this. I think so many of us when confronted with an unfamiliar situation really just don’t know what to say or do. I found this post to be super helpful in reminding me that friends are friends no matter what. Confession: I still use the phrase “that is so retareded” on occasion. I’m afraid I’m a product of my generation who just threw that term around. It’s horrible and I do it without thinking……..never about a person. I’m proud to say though that my teenage boys always correct me. They actually call me out on it and make me correct what I’ve said. Things are changing……….for the better. This next generation seems to really get it.
    Christina @ Juggling Real Food and Real Life recently posted…The Real Food Experience ~ Limit Food Ingredients Week 2 – Juggling Real Food and Real LifeMy Profile

    • Suncoast Momma says:

      Please don’t beat yourself up :) I don’t want to discourage anyone from talking to our families. The good thing is you are aware of it and better yet you’ve obviously brought your boys up well!

  7. Hi Marya,
    Over all, I think people are good and don’t intentionally try to hurt others. The trouble for me is not knowing what to say in situations that I have no experience in. I guess I am a bit slow that way. :) So reading this post is an eye opener and I appreciate the advice. I wouldn’t want to accidentally offend or hurt someone. I am pinning this to my parenting board.

    Have a wonderful week, Darlene
    Darlene recently posted…Make Your Pics More Pinteresting – Part 3 – Adding TextMy Profile

  8. I love the fact that you are making people who may not recognize that they’re saying something hurtful aware of the feelings of the mother. This is really great advice.
    Michelle recently posted…Window Shopping|Tuesday MorningMy Profile

  9. I love you pointed out what NOT to say to someone with a special needs child. I find it so offensive at some of the questions people pose to parents. Also, the sad and pitiful looks when they make the statements. Admittedly, I do not have a special needs child; however, I do have a special needs child in my family and I love her to death. She is just like everybody else and only has certain physical/mental limitations – hey, that’s my cousin and I spend as much time with her as I can to strenghten our relationship and to let her know how much I care about her and her mom and dad – to help them out sometimes.
    Nicole Baptist recently posted…On The Hush: Soulphisticated Ladies Author-Jaha KnightMy Profile

  10. I am amazed at how cruel and up thoughtful people can be! I am the proud mom of 5 boys. When I was expecting baby number 5 someone asked me if the kids all had the same father!
    Bless you for sharing!
    Bekkisayler @a better way to homeschool recently posted…Homeschooling 101: A Guide to Getting Started, by Confessions of a HomeschoolerMy Profile

  11. Thank you so much for posting this- I have a friend whose son has Down’s syndrome and she is very heavily involved on internet groups, but there is a real joy in face to face coffee dates so I will keep persevering.
    Lauren recently posted…Virtual Book Club For Kids (Paul Galdone)My Profile

  12. Thank you for posting this. Having my own child with special needs, I have certainly heard plenty of things I wish I hadn’t from well meaning and not so well meaning people out there. :)
    Colleen recently posted…Wonderful Wednesday’s Link-Up #5My Profile

  13. Thank you for this list and helping get the word out.

    I have two special needs sons it was so hard. there were days I would get rude questions and I just went with it. I figured its their issue me and my kids are happy and thriving I wasn’t going to let them get to me. at least in front of them. sometimes at night it hurt and I would have a little cry and prayer for them to understand.
    Tamara Wilson recently posted…3 Simple Tips to Teach Your Child to CommunicateMy Profile

  14. I have friends with special needs children. Our four boys have their own needs while they are not “special needs.” (“Special needs” is a term that does not always set well with me due to how some people choose to use it.)

    My boys are 100% gluten-free for medical reasons and a lot of comments come our way about their eating habits and food restrictions. There are things they will not eat, things they may eat, and there are foods that they LOVE. There is a difference in verifying if a food is safe and saying something like “Oh, that’s right, he can’t have that so he can go without.”

    One of my boys has a speech problem (just like my husband and I had at his age) and it is sad the amount of comments that are negative that are aimed at him. It angers me to see people so heartless!

    Perhaps I need to write a blog post about the above on my blog…

    Thank you for being a part of the 100 Days Challenge! I look forward to reading more on here and will be passing your blog address to friends that will benefit from your insights.

    • Suncoast Momma says:

      Thanks for stopping by and for sharing my blog. My son is gluten free and it’s been a big adjustment. Writing is definitely therapeutic!

  15. Thank you for being so thoughtful with this message. I can’t believe that people still say “sorry.”
    Nicole Robinson @MyCollegeBaby recently posted…Youth Sports: Still a good idea?My Profile

  16. This post is a gem! You gave very important info and I love that you added what to say. I hate the use of the r word and write about it every year.
    ConnieFoggles recently posted…Do I Look Fat in this Dress?My Profile

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