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Advice for Friends of Parents with a Down Syndrome Child

This is my first attempt at a collated work. I intended to write about this subject for some time now but wasn’t sure how to proceed. I want to show support to those with children, or about to have children, with Down syndrome. I found a great article by a writer known as Jenifer entitled, “Advice for moms (or anyone WITHOUT a child with Down syndrome.” On the web page, the author simply asked her readers a number of questions whose answers would be of supreme value to those of us with friends in this situation.

The original article can be found here: http://talk-ds.org/2011/03/09/advice-for-moms-or-anyone-without-a-child-with-down-syndrome/

Because this article was broken up into pieces, with multiple contributors, it struck me that this would be the ideal candidate for a collated work. I will attempt to arrange all of the pieces in a way that will be concise and easy to digest. Everything will be paraphrased to avoid infringement except when it clearly makes no sense to do so. My own thoughts will be revealed throughout. For the purposes of this article, Down syndrome will be abbreviated as “DS.”

Question #1

Initially the author briefly explains her intent to help people with friends who have children with DS. She lets her readers know that she cannot write the article by herself so asks, what she has identified, as important questions as follows…

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

Damn good question. There are plenty of wrong things to say but what are the right things?

JENNY M. suggests that we should offer congratulations and remark on the beauty of the child and their choice of names. Essentially, anything you would say about any of your friends’ children still apply regardless of whether they have DS or not.

Because parents of DS children may have to deal with multiple health problems associated with DS, JENNY M. gives us advice on what to say in those circumstances as well. She tells us to remind the parent(s) to just take things “one day, one hour, one minute at a time.” Making sure there are plenty of family, doctors, clergy, therapists, and the like are involved is also recommended.

SHANNON RUIZ has advice on what to say as well. She maintains that acknowledging that the parent(s) is(are) doing a great job dealing with the challenges is a good idea. She would have us also say things like, “It just doesn’t matter. We love her no matter what.”

CHRISTIE gives us a general idea on how to approach this even if the parent feels the need to grieve. She would have us let the mother know that grieving is okay. She admits that grieving is contrary to encouragement but that upon receiving a potentially troubling diagnosis a mother may have to deal with it as a crisis so will need someone to just listen and provide emotional validation.

NADINE gave birth to a baby with DS so she shares with us what helped her. Those who treated her baby “as a person” were the most encouraging. Again we are told that showing genuine interest in the child is helpful. Interacting with the child and showing interest in the child like one would any other was welcomed. The best supporters, it seems, where those who “celebrated” each of the child’s achievements and developed a “working relationship” with “Charlie” and his parents like they did with their other children.

What I take from all of this is to say the same things you would say to any parent regardless of the child’s diagnosis. Treat the child the way you would any other and, if there are medical complications, offer the same consolation you would with a parent of a “normal” child. Whatever “normal” means; we are all unique but more on this later.

Question #2

2. What things should people avoid saying to mom of a child with DS?

I wonder how many people end up saying stupid crap like, “oh I’m so sorry,” because they don’t understand what DS means and what it doesn’t. This would be an example of exactly what not to say by my estimation. We will hear what Jennifer’s reader/contributors had to say.

JENNY M. reminds us that slight differences in the way we say things can make a big difference. Try not to ask “how bad is it?” or inquiring if she is “high functioning.” She maintains that this question indicates ignorance about DS.

SHANNON RUIZ reinforces this idea citing additional examples. Saying that you can’t tell the baby is different in that way, asking about the degree in an insensitive way, and using the “’r’word” are discouraged. Additionally, telling the parent something like, “I don’t know how you do it” or, “I could never…” is probably not a good idea.

The “I really can’t tell” suggestion puzzled me a bit at first. Perhaps she is suggesting that saying something like that might sound insincere. I honestly couldn’t tell at first that one of my dear friend’s baby had Downs. It became more obvious over time (though she exceeded all doctor expectations) but by then, Facebook activity revealed a high level of interest in children with DS in general which was a “dead giveaway.”

The rest sounds like good advice but the “r” word comment strikes me as a bit difficult. I, and many other people, use the “r” word in casual conversation to describe anything and anybody who isn’t mentally/physically retarded. It might seem odd but this is probably the most difficult to me. On the one hand, I don’t mean anything by it, it is a matter of political correctness, and it can be difficult changing habits of speech. On the other hand, the word “retarded” is defined in such a way that it may discourage parents, friends, and family from giving their child the same due diligence and effort they might give a “normal” child assuming less potential than they may actually have. Perhaps this is an example of where politically correct speech may actually have a positive psychological impact. This is often not the case so I generally don’t recommend it.

CHRISTIE gives us some more examples and reworded versions of ones we have already heard. Don’t ask “how much” or if they are “high-functioning” or tell them they “don’t look like” they have DS.

For some reason, the “how much” comment makes me laugh; I’m not sure why. Avoid saying stuff like that. The parents will not know what the child’s potential may be and neither will the doctors though they may claim to. The “don’t look like” comment is similar to a previous suggestion and strikes me because I said something like this. If you really mean it then maybe it won’t be an issue but if you are lying to try to make the parent feel better then stop it; it might just make you seem like a “douche” while not being helpful or encouraging at all.

NADINE shares with us some of the particular things she found difficult dealing with so could help as a baseline when trying to avoid saying the wrong things.

People who were attempting to be supportive but “felt very sorry” for the family where labeled the “pity committee.” Nadine’s and her family didn’t feel like they needed pitying. She points out that their child having an “extra chromosome” was not expected but did not affect that he was a welcome and adored new addition. Furthermore, she talks about his arrival being part of “God’s plan & purpose” for their shared existence on this planet which was something to “celebrate” and that it provided additional “opportunities” to the family.

After telling us about how some of her pregnant friends avoided her, as if they could catch something, and then relating her discomfort hearing someone tell her pregnant friend to make sure “all the testing was done,” NADINE gives us a good example of what kind of comments that were difficult to hear. Remarks like “Oh, he’s still not walking” can be hurtful. NADINE found it easier to “brush off” well-intentioned but ignorant strangers.

Do not be ignorant if you want to be helpful. There are plenty of resources which can help grow understanding. What you don’t know can hurt your friends’ feelings.

Question #3

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.

I’m wondering if perhaps it might be best to advise people not to even think about their friend’s child as “different” or whatever? Maybe they just need to be informed that the things to say would be the same, for the most part, as they would say if the parent has a so-called “normal” child. Their friend with the child will probably broach the subject at some point so I’m thinking they should probably acquaint themselves with DS in advance. It may be important to learn what DS is, what it is not, what it means, and what it does not mean.

JENNY M. encourages us to be honest and open. She advises to “reach out” in spite of any fear you may have. She states that if you are worried you will say something wrong to admit it to your friend suggesting that the friend will be appreciative of your candor.

Some of the most valuable advice in my opinion is from SHANNON RUIZ who would have us get the parent(s) to tell us about DS because we don’t know a lot. We should show that we want to support the family but aren’t sure how. Soliciting advice on reading material and whatnot is also advised. Ask questions and let them know you are enthusiastic about their new family member.

I suspect asking these sorts of questions, with sincerity, would definitely be appreciated.

CHRISTIE suggests a tentative approach. She would have us “feel the new parent out” through gentle probing and asking for time with the mother and her new child.

This approach may be the safest because some avenues may not have the expected result. It could be wise to try to get an idea “where the parent’s head is at” before presuming you will know what they would find helpful or encouraging.

NADINE says something very similar if a bit more verbose. She reminds us to be honest and implies that we should conquer fear of asking questions. NADINE found that she would rather have to answer “dumb” questions rather than have people speculating when she isn’t around because they’re too scared to inquire.

Question #4

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

“Actions speak louder than words,” says the indomitable wisdom of “they.” What can we do to show our support?

JENNY M. relates and observation, apparently involving the columnist JENNIFER:

“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!

JENNY M. also gives us specific examples of practical ways to help. Preparing food, providing rides, and offering to watch the children to give the mother some time for herself are things she recommends. Apparently, when a child named “Martha” was born, JENNY M.’S church groups helped in these ways for which she was “forever grateful… more so than they will ever know!”

SUSAN took ownership of question four by relating that the “best thing” people had done was visiting her at the hospital to show their support without talking much about it at all. She was also touched by the gift of flowers from a “dear friend.” Again, those who were supporting indicated they understood how “precious” their new child was to them.

SHANNON RUIZ, one of the contributor/readers who methodically addressed each question on the list, drives the point home that helping with rides and babysitting the other children for appointments are good ways to assist. When a child is sick, and oftentimes children with DS are, texting calling or visiting can be a way to show support so SHARRON RUIZ recommends it. Again we are encouraged to provide food and she reveals that helping with house chores is a good idea as well. Getting involved in the “Down syndrome community” is something she recommends.

SHANNON RUIZ goes on to say, “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.”

CHRISTIE, who was also quite systematic in her contribution, lets us know that offering to watch the child so that the mother can take care of herself can be helpful. Once again, it is suggested to meals, in this case dinner, as well as helping with the other children for appointments.

NADINE, who also answered each question in turn, relates a wealth of advice about offering practical assistance. She would have us pray, talk to the mother after appointments, reassure the mother she is doing a wonderful job. NADINE lets us know that being specific about how the mother is doing a good job will benefit her more than saying something vague and general.

NADINE tells us to be proactive rather than simply asking if they can help. Asking if you can bring food may not ever amount to anything but showing up with food is more likely to. She also tells us to let the mother know how want to help rather than just asking which, though polite, may not translate into real assistance. We are to ask, “when can I come over?”

This approach is clearly more assertive so would be more likely to ensure that your desire to help will become manifest. Simply asking, “is there anything I can do,” or, “what can I do to help?” are nice gestures but not always particularly helpful. If the parents can think of a specific way to help, they can let you know but often we have to be more proactive.

Question #5

5. Anything else you wish other moms could understand?

This open question is perhaps of the most significance. It gives the readers a chance to drudge up things from their own experiences that may not fit into the mold of the previous four questions. I can only add, at this time, “Don’t assume stuff.” I didn’t even know a particular beautiful child had DS until I noticed some of her mother’s, my friend’s, Facebook activity. I thought it looked a bit DS but seemed otherwise quiet “normal.” DS isn’t always what the uninitiated might think it is, nor does it necessarily mean what, out of ignorance, one might assume it means.

JENNY M. reiterates that one should learn about DS and just help, fear notwithstanding. Honesty and persistence are also emphasized.

MISSY’s entire post is one paragraph which doesn’t seem to fall into any particular category except maybe this one. Her entire segment has been included word for word…

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!

SHANNON RUIZ expresses concern their child would be “treated differently.” She says that however her friends could fit their children into their lives “makes the world more alike than different.”

CHRISTIE reinforces my own belief that disabilities are “completely natural.” These things happen and everybody is unique, sometimes in conspicuous ways. She submits that, “Down syndrome is NOT the end of the world.” Surly, all of us run into adversity and it never is the “end of the world,” is it? Life, as they say, goes on and there will always be good days and bad days.

NADINE enlightens us with the knowledge of a “great Australian Christian book” having to do with the challenges of disabilities for families. She claims it has “practical suggestions” and has shared it with Christian friends. Presumably it could also have useful information for non-Christians as well. The book is entitled Take Heart by Kate Hurley.

Conclusions

Having read through the original article in its entirety, I’m noticing that many of the same points were brought up several times. It may be possible to hand someone a business card sized piece of paper with information on how to address this and let them go from there. The main points seem to be:

• Learn about Down syndrome.
• Don’t assume DS is a tragedy.
• Treat the child just like who it is: a person.
• Say things and help out in ways you would with any new baby regardless of diagnosis.
• If you are afraid to say the wrong things, admit it.
• If there is something you don’t know ask.
• Be proactive if you believe the family needs help.
• Include the child in playdates and activities whenever able.
• Teach your children about DS.

If any member can improve upon that list, either by streamlining it or adding to it; please do so.

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