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15 Responses to What to Say (and What NOT to Say) to a New/Pregnant Parent Who Receives a “Special Needs” Diagnosis

  1. pbandjam

    Thank you for a wonderful & enlightening read. Someone in my family just welcomed a son born with many challenges ahead of him but the love & the outpouring support from the Christian community makes him a very lucky boy! I didn’t quite know what or what not to say, your post will help a lot, thanks!

  2. Charise@I Thought I Knew Mama  

    I’m sharing this post. What wonderful advice!

  3. Katy Wolfer  

    Thank you, this is a really helpful post. My nephew is special needs (Angelman’s Syndrome) and was the first time that I really had close contact with a special needs child. Thank you again for sharing.

  4. Hannah  

    This a great article. I have often struggled with what to say and this has really given me some good ideas.

  5. Helena Sorus

    This is lovely and perfect. I thank you for writing this.

  6. Kai

    Thank you for this amazing article, as a mama of 2 special boys (and one girl too clever for her own good LOL) this article is a blessing to read. I have had it ALL thrown at me ‘why is he doing THAT?/oh that’s your excuse is it?/I don’t know how you do it?/OH, like Rainman, what’s his special ability?’ That last one gets to me, I’ve also had ‘He doesn’t LOOK special needs’ No because there are seen ones and unseen ones! My oldest son also has a unseen physical disability, he’s almost 7 and people think i am being cruel when i won’t let him jump off things in the park, play football etc etc, one wrong move and he can be in a wheelchair (he has Elhors Danlors III)people don’t realize i live each day facing speech issues, medical issues, knowing the fact i may get a call from school to say he’s dislocated and needs to go to hospital asap as his foot’s gone blue! And that’s just the start!
    All children are perfect angels, just the way they are intended, just some need a bit of help, and time, to get to their destinations! I am proud to be helping mine on their way 😀

  7. Crunchy Con Mommy  

    What a lovely post. I too, am saddened by the widespread abortion of unborn children who have been diagnosed with probably disabilities. And I love that NPN, while pro-choice, is willing to post pieces written by pro-life advocates too. Your openess to other opinions is heartening in a society where people are so quick to villainize those who disagree with them on abortion and other touchy topics!

  8. Ruth

    What a lovely and well thought out article! Thank you so much for the gentle reminders, I will keep all of this in mind the next time I am fortunate to interact with a child with a “diagnosis” {I had never heard that term, thank you for introducing me to it!!). I must have done something right when I was raising my 3 daughters because they have always been kind, accepting and helpful to any child or adult that they have met.
    God Bless You and congratulations on a VERY handsome young man….Sean looks like he would be a joy to spend time with!!!

  9. EarthyLady

    I appreciate the positive outlook and good advice. Understanding is the best place to start when it comes to love. I did think the suggestions about what to tell a pregnant woman who’s working through a diagnosis went too far though. Everyone has to do what’s right for them and love and support are much more useful than judgement or kind words with an agenda. Overall it was a lovely article and I don’t mean to take anything away from that. I just know how difficult these choices can be and support is the best thing anyone can offer.

  10. Rachel @ Lautaret Bohemiet

    This was a very thoughtful article, and very touching. I hope that a lot of people read it and find it very helpful and informative, as I’m sure they will.

    I had a difficult time with parts of it, and it’s taken me a while to figure out exactly why. For a bit of background, this is one of many posts that I have read lately that has left me with this feeling of uneasyness, so I will try to keep my comment directed at THIS post, but some of the passion behind my words may stem from the fact that there are many others posts similar to this one lately.

    Why I find this difficult is because I truly do believe, at my very core, that MOST people realy do want the best for others and really are doing their best. You mention that a lot of friends will sort of disappear after a difficult diagnosis/birth/outcome, etc. and on the surface, I guess it could seem safe to assume that these people simply aren’t “good friends”. The truth of the matter is, however, that these people may feel like so many others (myself included) that they simply can’t win, can’t say the right thing, they will only cause more pain than intended so they may as well stay away.

    I have several friends who, after being faced with various diagnosis or difficult children, began finding fault with EVERYONE around them. Though only one person ever personally told me I had said something that inadvertently hurt them (I used the phrase “that’s so lame” in a blog post and one of my readers has a daughter with spina bifida and it hurt him, which he told me in a loving way), I had several friends always venting to me about things their parents said, their in-laws said, their friends said. It was tiring trying to keep up. I wanted to shout, “But all of these people LOVE YOU! More than anyone else does! And you are pushing them away because they aren’t saying the EXACT right words!” And this is the battle many of us “outsiders” face. The last thing you want to do is offend a friend or love done. But when people are in such sensitive and heartbreaking situations, it is almost impossible NOT to offend them. So people stay away. But that isn’t helpful either.

    My brother has Tourettes Syndrome and my husband’s brother has is extremely low-functioning autistic, so we are no strangers to dealing with disabilities. The one thing we find consistently is that one phrase might hurt one parent and encourage another. One word might bristle one person and be just what another person wants to hear. A lot of it has to do, I believe, with WHO is saying it and HOW the person receiving it is feeling at the time. If a person I love and trust said to me “I’m so sorry” when they heard about my brother, I took this as compassion and understanding. Ours was, indeed, a difficult life because of my brother’s Tourettes. If someone passed it off as no big deal, this wasn’t very helpful. Both my family, as well as my husband’s, learned how to use humor and grace when dealing with others. It is almost impossible to deal with special needs in the absence of humor and grace.

    So much of the advice in this article resonated with me and others I know, but much of it didn’t. Much of it was, in fact, the very opposite of what I have felt and what I have been told by parents with differently-abled children.

    I guess my overall thought is that we ALL need more grace. All of us. The mother of a child with a disability needs grace. But so does the friend who cannot relate, but who has to sit by and watch her friend hurt and ache, all the while feeling helpless. The best way to make our friends pull away is to make them feel wrong. A person could follow this author’s advice point-by-point, but I promise: they could still hurt or offend someone. UNLESS we give each other grace. Unless we assume the best of one another. Unless we learn to truly speak to each other in love and compassion so THAT is what shines through in our words.

    I believe this author meant the best, and I believe this article can help a LOT of people! I truly do. I just also know how overwhelming all these “do’s and don’ts” can be, how daunting. So along with our preferences, we need to also offer up grace and understanding. We need to believe the best in others. Maybe in doing so, we can see past the vapid words and into the HEART of the person saying them. Right words or wrong words, when spoken with love, they can touch that part of our soul that needs it, the part that needs to know they are loved.

  11. Dr Sarah

    Thanks for this article. I guess the main thing I’d want to say is: Don’t make assumptions about how parents are going to feel.

    I recognise that a lot of parents who’ve received a diagnosis of disability in their child are grieving and do need that grief to be acknowledged, as you say. But that’s so far from the way I felt when my son’s autism was diagnosed. I was happy to have a name for his differences and fascinated to have the chance to find out more about what made him tick. Getting the diagnosis was, overall, a positive thing for me.

    The worst part was actually the worry that when I told people they would assume that I was grieving and that they had to acknowledge a grief that I didn’t, in fact, feel. In practice there weren’t any problems there, but, when I first had to tell people, I felt quite on edge in case I was going to find myself pigeonholed as a stereotype of a Grieving Parent that just didn’t match the reality.

    So… ask people who’ve had a diagnosis for their child how they feel, and don’t assume what the answer is going to be. People who are taking it hard certainly will appreciate you acknowledging that. But not everyone is going to feel that way.

    • Rachel @ Lautaret Bohemiet

      This was a great suggestion. The one thing we can assume is that we can’t assume anything. I really like the idea of simply ASKING a parent how they feel and then responding to their actual needs, instead of our perception or assumption about their needs.

      I really do believe that we can’t memorize a list of phrases that will please everyone, and by simply asking a parent how they feel, we eliminate that pressure.

  12. Beth  

    What a fantastic post! I appreciate you taking the time to point out that everyone is different and that it is okay to ask questions to the parents.

  13. Momma Jorje  

    Great post! I’ve read some of these ideas and even written some on my own blog during Down Syndrome Awareness Month: Etiquette.

    I *love* what you say about birth announcements! I didn’t do announcements with my youngest two (including my son with DS), but that is absolutely brilliant!