Explaining Complex Topics to Kids

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Explaining autism and Down Syndrome to kids

May 2011

I am looking for recommendations of books about children with Down Syndrome that are targeted at typically developing K+ children to increase understanding and support healthy relationships in our community. Thanks. bookworm

I really liked the picture book ''How Smudge Came'' by Nan Gregory. Here's a synopsis: Cindy, who lives in a group home and works all day at Hospice House, fights to keep the small stray dog she finds on the street. The thing I liked about it was that her disability and her living situation were presented very matter-of-factly, as backdrop to the story. I couldn't remember the name of the book, but tracked it down via a Google search that turned up this website: http://www.elmhurstpubliclibrary.org/Kids/SpecialNeedsChildrensBooklist.php, which has a section with 9 titles for Down Syndrome. Carrie
August 2008

Hello wise parents...I am looking for some advice on how to explain down syndrome and autism to a five year old (and a three year old, if possible). Every year, we vacation with an adult with down syndrome AND our new next door neighbor has a slightly older child with autism. My elder daughter is asking questions and I am searching for a way to explain the special circumstances for each person.

My elder daughter worships our friend with down syndrome (she is the only one who will show her how to bait the cradad traps at Tahoe), but is having a hard time understanding the combination of her adultness (obvious age, has a job, etc) and her childness (messy eating, poor reader, etc). My younger child is a bit scared of her...bothered by her different-ness or that the woman complains about her loudness. I just try to explain that screaming bothers her (and it does...more than non-down syndrome peers).

There hasn't been any curiosity expressed yet re: our new neighbor who is autistic, but I am sure that it will come soon. My elder daughter spent a few hours with him and a sibling last weekend -- the three of them watching a movie while I volunteered down the hall. He doesn't speak, but his parents tell me that he understands perfectly. He does grunt and make other noises, but I am not sure that those would stand out to my daughter as a few of her friends have speech difficulties.

So the question is...how do explain to her what makes these children different, but special. I tried to explain 'down syndrome' to her as something that happened before our friend was born that makes things more challenging for her like reading and writing (current interests of my child) and that she is special because she is such a hard worker and overcomes these challenges. But, I fell like my explanation falls short.

Does anyone have a good explanation to help her understand (and even my younger daughter) the amazing gifts these friends make to their families and those who get to spend time with them? And, I do not mean that in a condescending way. I truly love my friend's sister with down syndrome and as I get to know my autistic neighbor's mother, I hope that she will understand that I could not care less if he is wandering around my house while we are sitting in the living room or making noises that don't fall within the realm of normal. -anon

Thank you for your thoughtful question! I have 4 kids and my second child, darling daugther, has Down syndrome so i'll tell you how i explained it to my son when he was around your child's age. He obviously knows lots of kids with Ds as well as autism and cp and other special needs. We just always talked about differences in people and Ds is something somepeople are born with and affects the way they look - shorter, little ears and nose, beautiful eyes :-) and the way they learn etc. I tend to explain autism more on an individual basis but generally explain that somepeople are sensitive to noise, some to crowds, or textures. It's important to be open to all their questions and also I tend to watch myself from over explaining stuff. We also are pro-people first language so its a woman with Downs syndrome instead of a Downs woman (maybe nitpicky sorry :-)

I really like all of Todd Parr's books but especially the ''It's Okay to Be Different'' book and it has always been a good conversation starter with my kids including my daughter with Ds! EAB

The best explanation is the simplest: there are many kinds of people in the world, and they all deserve respect. Down syndrome and autism are not ''special''; they are just normal human variations. A mom

Talking to a child about a murder

June 2008

I recently started dating a woman whose sister was murdered in the most horrific way possible 30 years ago at the age of 11. My 7 yo daughter has seen pictures of this sister, and has heard my girlfriend mention her, so she knows she existed. She recently asked more about her, and we told her she was dead, and then she asked more about it, naturally. We basically said that she had been killed and that it was sad. But I definitely don't want to go into any more detail than that. Does anyone have any suggestions for a good way to talk about this? I know we are not done with this topic. Thanks

I'm not a therapist or a specialist in this area. And perhaps the best advice would be to speak with one. But I wanted to share a perspective I'll never forget from my own childhood... when I was between the ages of about 8 and 12, ''stranger danger'' was in vogue as a way to make children aware of kidnappers. I knew and was vigilant in hearing stories of children my age being kidnapped, was told not to trust strangers, etc. From an adult perspective, I understand the tactic. As a child, however, this ''awareness'' translated to my absolute certainty that I would be kidnapped. I was afraid, had nightmares, and dug out a hiding place behind a foil of toys under my bed so if someone came into the house I'd be safe.

My point is, no matter how you explain violence done to children to a child, she's likely to internalize it as something that can - or even will - happen to her. And while the cautionary tale (don't get in that car, etc) is a good one, the fear it instills can be quite distracting to a happy childhood.

I don't have advice about what exactly to say, but simply to reinforce that mindfulness will be paramount. And of course I applaud your asking advice before plunging in. Maybe a local child psychologist can offer more. Emily

Dear \x93Talking\x94, First of all, I am so sorry for your girlfriend\x92s loss. I do not have experience with this myself, but it does seem that one possible angle is to emphasize who the sister was as a person, rather than focusing at all on the manner in which she died. Of course you are asking this question because you obviously don\x92t want to traumatize your seven year old. Is it possible to talk about the sister who passed away in terms of what she was like and how much her sister misses her, in order to a) have your daughter be aware of the deceased sister as she would an ancestor who had died, or any other family member who had died before she had a chance to know them and b) to create empathy for your girlfriend and her loss.

Also, I wonder if seeking the input of a professional who specializes in talking to children about death would be a good idea?

I have no professional knowledge about this whatsoever but it does seem to me that it would be important to not discuss the details of the murder until she is much much older \x96 maybe 17?

I hope this is not indelicate or inappropriate of me to say this, but I believe that I may know the murder to which you are referring. In 1978 I was a 9 year old living in Moraga, and an 11 year old girl from the community was murdered. I was in the same class as a girl that I think was the cousin of the murder victim. I never ever forgot about the murder, and when the case was solved a few years ago, I was so relieved for the family. If this is the same case, I just want you to know that there are many of us out here who continued to care for all these years. She was not forgotten.

I wish you the very best with this situation. Sincerely, M.

I have strong feelings about your post because in all my years of teaching I've seen many kids robbed of their chance to be kids and feel safe in the world because parents feel it's their job to teach them about the ''real world.'' Our kids are going to be familiar with all the horrible stuff that goes on (even to people in our own families, my condolences to yours) soon enough. It may be a bit protective but I plan on being rather vague when it comes to things like this with my son, until he's got more years and more awareness. -another mama

Preschooler with *big questions*

Jan 2006

My 3.5 year old daughter has suddenly started asking the really big questions: how did I get in Mommy's tummy? How did I get out of Mommy's tummy? Who made us? What are we made of? Will Mommy die? (This was after watching Charlotte's Web.) Who is Jesus? Who is God?

I'm not so much concerned with how to answer those questions, though suggestions on how to handle them, how detailed to get, are certainly welcome. I'm more interested in know whether others have gotten these questions by such a young child. She is a very inquisitive child and she's very serious about getting the answers. Any thoughts? Mommy of the inquisitor

I can relate! My 3.5-year-old is also an ''inquisitor'' and I was smiling while reading both your posting and the one about the 3.5-year-old asking about safety and ''bad people.'' My daughter started with Phase I of these questions about a year ago and they have only gotten harder! She has had several lengthy rounds of questions about conception and childbirth-- how do babies get out, how do they get in, where do the ''seed parts'' come from in us and how do they get made, is the reason Mommy isn't going to make another baby right now because she or Daddy ran out of ''the seed parts,'' and my favorite ''What happens when the mommy seed part doesn't get the seed part from the Daddy? Does it just all come out like ooky stuff?'' She wants to know about God, about Saints (from the song ''When the Saints come marching in'') about ''bad people'', about why we lock our doors, about why people are bad and whether or not they can learn to be good. She went through a long phase of questions about death that started more than a year ago when a neighbor's cat died and still talks about it pretty regularly, often looking for assurance that I would love her even if she died (!!) She once spent an entire dinner questioning her grandparents about when they would die (''Will you die here or in your house or in the hospital?'') She wants to know where electricity comes from and if it is like the energy she gets from eating healthy food, how do lightbulbs work, how does a blue shirt get blue, why do trees lose their leaves, and on and on and on. Big questions and small, she has stumped me more than once! I think it is a normal part of being a preschooler. It's pretty amazing, isn't it? Caroline
Oh, I can so relate!!! I have a 4.5 year old who has been asking all of those big questions for over a year now. We have had lots and lots of such discussions -- I particularly remember one very big-deal epistomological discussion at 1:00 in the morning (when I was totally cross-eyed, and he was crying about the ''Will Mommy die?'' and ''Will I die?'' questions); and another long series of discussions about Jesus dying, when my boy caught sight of a (rather graphic) painting at the back of our church. The things I might recommend are below (obviously, you need to match these up with your particular belief system -- I'm just sharing what worked for us as examples): (1) don't get overly detailed, but do be extremely consistent -- what has worked for my son about the ''Why do people die?'' type questions has been the reply (over and over, I might add) that usually people die when they are very old, or if they get very sick. The question was asked many times, and he seemed to want that same answer over and over (at least, it seemed to satisfy him, where another answer would not). (2) try to find a concrete analogy that works. For my son, one of the most upsetting notions about dying was that he would die before me, and would go to heaven without me, which he found very troubling. What worked there was to tell him that heaven was like preschool: if he went there before me, he would hang out with lots of people to play with, and God to take care of him like a preschool teacher does, and that after awhile I would come. He likes and understands preschool, so this really made him feel better. (3) find kids' books that address the question. Reading the story of Good Friday through Easter in a children's Bible (lots of times) helped to deal with the questions about Jesus. Karen
Your preschooler's questions are totally normal and I think her curiousity is very healthy. My 4-year-old has asked, ''what is time?'', ''what is a magnetic field?'', ''how did I get in your tummy?'', ''what is God?'', and many more. I think it is only natural to ask these things when you are trying to figure out how the world works. Liz O.
One thing I have learned about kid's ''big'' questions is that they are usually just looking for a small piece of the puzzle so I always ask them what they think the answer is first so that I can determine what they are really asking or what information they are really looking for instead of launching into a big complicated explanation that they may not want. This hopefully opens up a dialogue, a working out the answer together. Also, I think I have gotten better about giving straightforward and short-ish answers. I also try to take my time with my answer. They deserve a thoughtful answer and sometimes I tell them I need to think about how to answer so I will ''get back to them''. Hope this helps. isn't parenting fun!
I'm just shooting from the hip here. Tell her an age appropriate answer. How did she get into your tummy? Tell her that you and daddy put her there with your love and hope. She started out very small in your tummy and you gave her love and hope and that every day she grew until she was born. Tell her she came out of your uterus through your vagina. She has got to know that she has genitals, I mean, after all, every boy on the planet knows he's got a penis and testicles early on. He may not have the words. Why keep our daughters in the dark about their genitals?! As far as whether you will die...The question is how do you cushion the truth that indeed you and I will eventually die. Try telling her this...Ask her what happens in Charlotte's web? Tell her that when you remember people that you love when they die they continue to live in your heart. Tell her that it is sad when people we love do die. Tell her you hope to live for a very long time. Talk to her about what you did when someone that you loved died. Tell her how you remember that person. The ''God'' question: Here is where you have to look at your religious beliefs. Augsburg Fortress puts out some really good children's books about God. There are three of them one is titled, Where is God?. I do believe that here is where you have to ask yourself: What do you and your spouse believe? How do you both want to raise your kids? Try talking to a pastor or priest for some guidance. The question about ''Who is Jesus'' look above. What do you think? Yes, these are all big questions. These were ''big'' questions we posed to our parents at one time. How did your parents handle or not handle this? How did that affect you? How do you want your child to feel? These are not ''big'' questions to her. She is curious and you will find out that a simple answer will suit her happily. Be careful that you don't lie to her or cause problems later on... like telling her about a stork- I mean - come on. Keep in mind what your comfort level is. These questions will not stop and it is best to be prepared. Tell her the truth, you don't have to get into details. Just keep it age-appropriate. She will thank you for it later on. Bring on the ''big'' questions
I'm curious to see the other responses to your post since I was thinking of asking the same question. I've been getting similar questions from my almost 3.5 y/o. He asked me how his sister came out of my tummy. When I gave him the brief answer, he continued to question, ''but how did she GET down there? Did she crawl?'' and ''but how did she get OUT?'' So he was wanting very specific answers to those as well as continuing w/ questions & discussion we have about dying, God, heaven, people/pets we know who have died, etc. It seems that my brevity isn't appreciated. Details, that's what these inquisitive minds want; and will accept nothing less. I'm not aware of anyone else whose preschoolers have similar questions/discussions, but I have a feeling it might have something to do w/ their being so verbal. It might be that other kids this age have these questions or thoughts but don't know how to verbalize them is the same way. I'm still maintaining brief answers as long as he allows it (like not going into great detail b/c he'll lose patience by the time I finish answering.) Let's just hope they continue asking us questions when they're older, instead of going elsewhere. Paula C.
I think those are totally typical questions for that age, at least for my 3.5 year old they are, and many other kids that age I know. She's stumped me more than once as I didn't want to upset or confuse her (if she asks about an animal dying, something about God, etc.). I've realized, though, that she is usually satisfied with a pretty simple answer; there is no need to go into a big existential explanation. They are not always as sophisticated as they seem! For example, my daughter often shows an interest in church-I referred to her once as the Little Minister-but as it turns out what she was really interested in was wearing a dress and having cookies. (: It's pretty interesting what they come up with, though. Julie

Talking to kids about estranged family members

March 2004

My 6 year old has been asking about his grandparents (my parents) as well as my siblings. I have been estranged from them since he was 1, after my mother died and my dad insisted that my siblings have nothing to do with me because I could not make it for her funeral. My relationship with my family has always been difficult, and became especially strained when my sister became a fundamentalist Christian and convinced everyone in the family that I was a heathen of sorts. My whole family is very bigoted and intolerant toward anyone who is different than them. I am the only member of my family to go to college and have been severely criticized over the years, for among other things, the fact that I have friends of other races and nationalities and do not go to any church. What should I tell my son? My husband's parents are both dead, so he has no other grandparents. I would rather not deal with it at all, but I fear it will not go away. K.

I would keep it age appropriate and say that unfortunately your family members are not nice people and that they are mean to people that don't look or think like them. I think that this could be a good opportunity to teach that one should not tolerate bad behavior and one should stand up for oneUs values even though it might mean having people mad at you. anon

Talking to kids about adult difficulties

May 2002

We've dealt with some serious stresses over the last couple of years -- life-threatening parental illness and job transitions; and I've been wondering how other people talk about difficulties around their kids (do they always wait until the kids are asleep?) and to their kids(ages 5-8). My daughter seems to be responding to the stresses we're under by having nightmares of the animals chasing her variety a couple of times a week. anon

I feel for your situation, and have had to navigate some of those same waters. A couple of years back, I came upon a great book, called ''How to Talk to your Kids About Really Important Things'', by Charles Schaefer and Theresa Foy DiGeronimo. I came upon it at Nolo Press of all places, and it has been a great resource. It includes chapters on, among other things, HIV/AIDS, drug abuse, divorce, camp, hospitalization, alcoholism, divorce, remarriage and step-parenting, and so forth. One of the main premises of the book is to be a parent that is ''askable'', because kids need to know, and will find answers to their questions, one way or another, either from you or somewhere else. If they feel comfortable asking you, and you are able to respond with integrity, then you retain a relatively large measure of control over the answers (thus helping to shape their response). I also dealt with an illness when my kids were four and six. When I first learned I would need surgery, I sort of walked away down my own path until I could really come back into the family picture with all the information I needed, and then to communicate effectively to the kids what was going on, translate things into their terms, make it managable for them, be prepared to respond to their questions with drawings and calendars, and most importantly, I think before I went into surgery I had done a lot of my own homework, so I could tell them what to expect without interjecting a lot of my own anxiety. And of course I was blessed to have a great outcome, but I have a permanent condition that still requires management. I have also taken great care to let the kids know they are in no way responsible for my well-being (my son, at the age of five, once offered to be in charge of reminding me to take my daily medicine - I thanked him for his thoughtfulness but told him directly I would never burden him with the notion that he is responsible for looking after me to that degree (his relief was palpable). As far as communicating with your husband, I'd invest in a weekly baby-sitter, or even drop the kids off with a friend/relative every now and then, so you could enjoy the comfort of your own home without needing to be concerned with their care. I found it really critical to stay closely connected to my husband during that time, and sometimes my energy just wouldn't hold out until everyone was tucked in. I did not discuss these big ticket items in front of the kids. My two, and it sounds like your daughter as well, are just barometers of the emotional life of the household. Not that they should be fully protected from all of life's events, but the thought of anything harming mommy or daddy is just really too much to bear for small people. I would find it very natural that your daughter's concerns about your welfare would express themselves in many ways, including bad dreams. Now for some good news: kids are resilient, as we all know, and for my own son and daughter, they have a greater awareness of their own health and bodily functions, and how hardships come, are handled, and go. We continue to talk as things come up, but always with a great mindfulness as to what is age appropriate. Best of luck with your concerns and the well-being of your family. Deborah