Ages and Stages, Family, Uncategorized

Advice for moms (or anyone) WITHOUT a child with Down syndrome

Kelle and Nella, ©Kelle Hampton

Calling all parents of a child(ren) with Down syndrome. I am submitting an article for a local Mothers of Preschoolers (MOPS) Chapter on how moms can support their friend(s) who have a child with Down syndrome or other special needs. But, I can’t write this one on my own. I really need your feedback and insights! 

If you have experiences you’d like to share I would love to use them. Some questions I’ve been asked in preparation for this submission include:

  1. What are words of encouragement someone can give a mom/friend of  a child with DS (or another special need)?
  2. What things should people avoid saying to mom of a child with DS?
  3. What can you tell a mom who wants to reach out but is afraid to say the wrong thing or appear out of touch? I’m talking specifically moms who really do care but are nervous of making a mistake.
  4. What are practical ways another mom can support a mom of a child with DS? Think about doing vs saying.
  5. Anything else you wish other moms could understand?

Post your two-cents below! And thank you!

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6 thoughts on “Advice for moms (or anyone) WITHOUT a child with Down syndrome”

  1. Jen-thanks so much for asking this question!!! Often, like other mothers, I want to express what one should and shouldn’t say. Rarely does anyone ask.

    Words of encouragement – ‘Congratulations on the birth of your baby! She is beautiful. What a lovely name. He is such a handsome boy.” These are the things one would say if the baby did not have Ds, so say them.

    Jen – one time you came down to my clinic to see my patient. I observed that you were so encouraging of this mother and her new baby who had Down syndrome. I often think of that image – of you holding this beautiful new baby, of the mother smiling. You were teaching me how to be encouraging! Thanks for that!

    Encouragement – talking with other mothers who had experienced many of the health problems that Martha was going through or even the mommy problems I was going through that first year was so encouraging. Knowing that the first year can be difficult but that it would get better was encouraging.

    Encouragement – “take it one day, one hour, one minute at a time…things will get better”

    Encouragement – Pray!

    Encouragement – surround yourself, your little one, your family with a good team of professionals – doctors, therapists, interventionists, clergy, friends, etc. A person cannot raise any child on their own…create your team.

    Avoid saying: “downs baby. That baby has downs.” Rather say “the baby with Down sydrome” Use person first language and the diagnosis is Down syndrome (no s, no apostrophe s, capital D and little s on syndrome). Warning you will find many professionals – doctors included – who do not know this! Kindly educate them.

    Avoid saying: “how bad is it?” “is she high funtioning?”” Doctors have said this to me. This question does not make any sense to me and also reveals to me that the person asking it does not know much (if anything) about Ds. My reply is calm, and I make an attempt to educate this person about Ds.

    Reach Out Anyway, even if you are afraid. Be honest. If you are afraid to say the wrong thing – then say so. Your friend will so appreciate your honesty and welcome your support.

    Reaching out – so many ways – a smile, a pat on the back, holding the baby, babysitting, visiting, a phone call, a meal, a chat, words of encouragement – see above, a prayer, resources in the community, a hug.

    Reaching out – I often wish friends, who do not know anything about Ds, would ask or say – “Tell me more about Ds so that I can understand what you are going through” or “What is Ds?” or “How does Ds affect your baby?”

    Practical ways – make a meal, drive the other kids to activities, babysit for short time so a mom can do something for herself, take a walk with the mom, go out to lunch, visit, call her.

    When Martha was born, my church made meals and the preschool mothers (my other two children were in preschool) made meals. I was set for three months. I am forever grateful…more so than they will ever know!

    One last thing for mothers of children with Ds should know. Frequently you will encounter people who are ignorant about Down syndrome (are afraid, don’t know, don’t know what to say). One should not assume the worst. Do not assume that they are intending to hurt feelings. Do not assume that they are intending to say the wrong thing. Assume the best – that they want to know, that they want to help, that they want to do their best but that they need the guidance and knowledge of how to do so.

    One more last thing for mothers of children with Ds…forgive those that have hurt you, move on and find / create a supportive team for your child and family.

    For mothers / friends / people who want to help your friend who has a child with Ds… jump in, do not be afraid, be honest, be persistent… and learn about Ds.

  2. Many of our kids understand EVERYTHING that is being said to them or about them. Just because they may not speak clearly, they still are thinking, inquisitive little human beings. They aren’t fragile, and they won’t break. You can touch them and it won’t feel weird, lol, they feel like little soft people. Our kids like to do everything typical kids like to do – don’t exclude them from parties, playdates etc. If there is any assumption that we’d like you to make when you see or meet one of our kids it is that they are more like our other kids (or your child) than they are different. Many of us LOVE to talk about Down syndrome and our kids – it doesn’t have to be an elephant in the room – we know our kids have Down syndrome, lol. You’ve gotten some great advice on this thread!

  3. Best thing anyone did was knowing that I had given birth to a baby with DS they came to the hospital to offer support. They didn’t say much but showed how much they cared. Second best thing was a dear friend sent flowers and acknowledged how precious our newborn baby was. susan

  4. 1.What are words of encouragement someone can give a mom/friend of a child with DS (or another special need)?
    I’m sure raising XXXX has it’s challenges but I think you are doing a great job. She is so lucky to have such great parents.
    It just doesn’t matter. We love her no matter what.

    2.What things should people avoid saying to mom of a child with DS? I really can’t tell. How severe is it? The “r” word. I don’t know how you do it. I could never…….

    3.What can you tell a mom who wants to reach out but is afraid to say the wrong thing or appear out of touch? I’m talking specifically moms who really do care but are nervous of making a mistake.
    Tell me about Down syndrome. I don’t know much about it but I want to make sure I know how to support your family.
    If I wanted to learn a little more, what website or book would you suggest? If I have questions can I ask you?
    I don’t know what it’s like to raise a child with Down syndrome but I want you to know that I’m willing to help however I can. We are so excited about knowing XXXXX and look forward to watching her grow up.

    4.What are practical ways another mom can support a mom of a child with DS? Think about doing vs saying. Offer to pick up or drop for a therapy appointment. Help with childcare for the other kids during therapy appointments. If the child is sick (heart issues, leukemia, hospital stays) text, call or visit. As how you can help. Offer to take care of home and/or other children. Bring food and arrange for housecleaning.
    Look for opportunities to support Down syndrome in the community. If there is a Buddy Walk or Special Olympics fundraiser ask if the family is participating and join the team or start one.
    Make sure your own children NEVER use the “r” word and understand Down syndrome.
    Invite our children over for playdates and sleepovers. Treat them like typical kids if the kiddos are similar age.

    5.Anything else you wish other moms could understand?
    We are worried about our child having friends and being treated differently. However you can include our child(ren) into their own family makes the world more alike than different.

  5. 1. What are words of encouragement someone can give a mom/friend of a child with DS (or another special need)?

    To simply let a mother know it is ok to grieve if she needs too, I know grieving is contradictory to encouragement but so many mother’s need to have this cathartic expression first to move past the diagnosis–no matter what that diagnosis is. And to offer to be there, even if that mom has no idea what the other mother is going through. An ear to listen with and a shoulder to cry on may be exactly what this new mom needs.

    2. What things should people avoid saying to mom of a child with DS?
    How much DS do they have? Are they high-functioning? And, “well, they don’t look like they have Down sydnrome.”

    3. What can you tell a mom who wants to reach out but is afraid to say the wrong thing or appear out of touch? I’m talking specifically moms who really do care but are nervous of making a mistake.

    To feel the new parent out, ask politely if they need anything. Can I come spend the day with you and your baby?

    4. What are practical ways another mom can support a mom of a child with DS? Think about doing vs saying.

    Offer to come watch the baby so mommy can take a shower or a bath. Offer to make a dinner, better yet, just show up with a cooked meal. Offer to watch siblings so mom can focus on a therapy session.

    5. Anything else you wish other moms could understand?
    Down syndrome is NOT the end of the world. It takes time for people to understand that disabilities are completely natural.

    1. I’m speaking purely from my own experience here, the things that have encouraged me and the things that I have found discouraging or difficult.

      1. The people who have encouraged us the most are those who are genuinely interested in XXXX as a person. They talk to him, they want to hold him, they are interested in what he is doing and learning and they notice things about him (e.g that he’s sitting up now or crawling etc). They CELEBRATE with us his every achievement and they treat Charlie the same way they treat our other kids. They have or are working on having a relationship with him, as well as us.
      2. These are the things I found difficult to deal with, so they would be on my avoid list. However I’m not speaking for all mums of children with Down syndrome here I’m just talking about my own experience.
      We had lots of people who were very caring but who also felt very sorry for us, we aptly named them the “pity committee”. We didn’t feel we needed pitying, nor did XXXX. His arrival with an extra chromosone wasn’t quite what we were expecting but that was okay we still loved and very much wanted our little guy. We also felt that this was part of God’s plan & purpose for our & Charlie’s life so we wanted to celebrate his arrival & the opportunities it opened up for us as a family.
      I had several friends who were pregnant who didn’t come near me until after their babies were born. I felt like I had something catching and had to be avoided. That was really hurtful.
      I had another friend who in a discussion that I was a part of with a pregnant friend made a big point about making sure you do all the testing, particularly the nuchal fold. I was having a hard time biting my lip about to start with my “Are you going to do anything about it?” spiel!
      Comments such as “Oh, he’s still not walking”
      Jenny M thanks for your encouragement too about letting go of some of these things. I need to work on that! I’ve found it easier to deal with strangers who you can just brush off as well-meaning but have no idea and you can give them a quick kind answer and walk away.
      3. In relation to question 3 I think the important thing here is to be honest with the other person. I had a friend early on who wanted to know things and she was really nervous about asking me questions and I said to her “Ask away, go for it. We’ve had to learn all this stuff as well, and if you can’t ask me, who can you ask.” I’d much rather people ask me the dumb questions or all those questions they don’t dare say aloud and be honest about it than have everyone discussing stuff behind my back.
      4. Praying.
      Remembering to follow up after medical appts, hospital visits etc to see how things are going.
      I think lots of mums need affirmation that they are doing a good job as mums and especially those that are dealing with special needs. I know this is a saying thing (sorry) but its something that is really important. It also needs to be a “You are doing a great job” ane then mention something specific you’ve noticed rather than a “I don’t know how you do it, I couldn’t do it”.
      If you make an offer to help actually book it in or as the others said turn up with a meal or come and mind the kids so mum and dad can go out together. Its easy to say “I’d like to help” but a lot of times that doesn’t actually lead to any doing. Sometimes you have to be a little more forceful and say this is what I want to do, when can I come over and book a time that’s within the next couple of days.
      5.There is a great Australian Christian book on families living with disability by Kate Hurley called Take Heart that has a great section in the back on how to help families and lots of really practical suggestions. I can highly recommend the book, have read it several times myself and bought numerous copies to pass onto other Christian friends.

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