Answering Your Child’s Questions about Special Needs

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At some point, our children will ask the question, “Why is that person different from me?” Life as MOM contributor Deanna shares about answering your child’s questions about special needs.

Answering Your Child's Quesitons about Special Needs | LifeasMOM.com

It’s coming. I don’t know when, but it is directly ahead. Whether 1 year from now or 1 week from now, this question is inevitable. And I’m not sure what I’m going to say.

Will it be a casual question like “Hey mom, why is Addison so different?” or will it be one of anger, “It isn’t FAIR that I have to do this and Addison DOESN’T.”

Perhaps just curiosity, “Why does my sister talk differently than my friend’s sisters?”

I don’t know, but I feel this need to collect myself ahead of time. To know what I will say. Because as my little boy stares at me with those blue eyes, trusting me more than I know what to do with, I have to have an answer.

I don’t want him to resent the fact that his sister has Down syndrome. I don’t want him to hate her for being different. I don’t want him to ever wish her away or be embarrassed by her.

Right now he doesn’t even know that those things are possibilities because he hasn’t asked the question yet.

Answering Your Child's Quesitons about Special Needs | LifeasMOM.com

Why is she different?

For now I try to build stepping stones up to this tall tower of “the question”. I emphasize kindness. I repeat “We treat others as we want them to treat us!” When he complains that Addison isn’t having to do something he is, I tell him he is only responsible for Carter, let Addison worry about Addison’s obedience.

Tonight after bath, he asked me some very specific questions about his body’s anatomy versus Addison’s and mine. Wincing inside, I stared at him and just told him the truth. Yes, Addison and I have different body parts than he, Daddy, and Eli have.

“Oh, ok.” he said, and moved on to the next thing.

Maybe the question will be nothing more than that. Maybe because he has the privilege of knowing Addison as a person long before he ever registers the words “Down syndrome”, he will just hear a straightforward answer and move on.

Maybe it will be “Hey mom, why is Addison different?”

“Well son, Addison has something called Down syndrome. She was born with it. It isn’t a bad something. It’s just a different something. It doesn’t make her any less your sister or the person that you have been wrestling and playing with for the past four years. It just is.”

“Oh, ok.” and maybe he will just move it along without giving it a second thought.

I don’t know.

Answering Your Child's Quesitons about Special Needs | LifeasMOM.com

It’s a strange thing, our perceptions of “something”. My perception when I first heard the words Down syndrome was “BAD and HORRIBLE and LIFE CHANGING”. My son, who has known only happiness associated with his sister, will have a completely different perception of Down syndrome. He will never have known life without Down syndrome being a part of it.

To be honest? I’m completely jealous. Down syndrome has taught me so much that I wish I could go back and change my initial perception to the happy one that time has brought to our family.

This whole concept of teaching my children all about life and building their perceptions is a scary thing.

What will other parents say?

I can’t help but think about all of the other 4-year-olds right now asking their moms “Hey, why is that little girl so different?” and wondering what those moms will say, knowing that their response perhaps might shape their child’s perception of disability for life.

How will they answer the question about Down syndrome or other special needs?

Hey, I’m not judging. I am sweating in my boots just imagining the conversation myself.

But as I stare into the almond-shaped eyes of my little girl, as I hold her close and melt into her sweet hug, as I listen to her voice speak to me…yes decidedly different sounding…but words that she has carefully chosen to communicate with me, I can only hope that these conversations will include something along the line of, “You know, it can be a beautiful thing to be different. Difference isn’t bad. It just is.”

Other Posts by Deanna:

deannaDeanna is passionate about special needs advocacy and new motherhood- two things that go hand in hand for her right now. Three kids four and under, the oldest of which has Down syndrome- keeps her quite busy. But there’s always enough time left at the end of the day to write all about the insanity at her blog Everything and Nothing from Essex. And to laugh- always, always there is time to laugh.

Technically labeled a “special” mother, Deanna really finds nothing special about herself. Truly, special needs parenting is just about taking it one day at a time- enjoying the highs, sloughing through the lows, and stumbling through the mundane while drinking too much coffee. Read all of Deanna’s posts here.

How do YOU handle your child’s questions about differences and special needs?

About Jessica Fisher

I believe you can get great meals on the table -- and still keep that pretty smile on your face.

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Comments

  1. Oh I just want to give you a hug and tell you it will all be alright. Sigh

    I think you’re doing a good job of handling the now questions! You worry about YOU [the right answer in any case with or without special needs] and not what other people are doing/responsible for/capable of. We are all different. Different brains need to learn differently and have different things that are easy or difficult for them. For EVERYONE. Truth.

    I think your son will surprise you in understanding about the difference that is his sweet, challenging, funny, aggravating, loving and everything a sister can be sister. What he will likely be looking for is words, explanations like the one you imagine giving, to put some clarity to his observations.

    Another thing to consider answers for will be his need to be able to explain to those four year olds who will soon be old enough to ask HIM, not their moms. Help him find words that work for him, that express what he wants them to know about his sister. He will be the banner for embracing special needs kids in his little world. And will probably do a great job at it.

    I hope the moms who make up your world give the right answers and say the right things, but they won’t always. Neither will the children. It’s part of life, for everyone. Why is your sister like that? Isn’t your sister too fat? Why is your brother so short? What’s that thing on his face? Is that your CAR?!?!? . . . it goes on forever. The important thing is to bolster their self confidence, and talk about how some people say things without thinking about how it makes someone else feel. And about how we shouldn’t judge – because everyone has something that makes them special, and everyone has things that are more challenging for them – but that some people’s “challenging things” are more obvious than others. To be kind because everyoe is struggling with something. But also to understand that someone else’s challenging parts, whether prejudice or being judgmental, or too rough, or unkind, are not something they have to allow to affect them in any way.

    • Thank you for this. This is such a thoughtful reply, and you bring up many good points. I especially love about what you said about teaching Carter to answer the questions himself. I am guessing he will do far better at it than I can. I love his innocent and ability to explain things so clearly. Thank you! You gave me much to ponder on.

  2. I loved your article. I too have a special needs child who just turned 22 yrs old. She has an older sister by 7 yrs and a younger brother by 5 yrs. My older girl had difficult times understanding why I or her dad could take time off from work to go to OT/PT and doctor appointments but couldn’t take time off to go on field trips. We had a lot of appointments when “E” was young and my employer was very kind to let me off as much time as I needed. We definitely had to make special time for her too. Now my son has only known his sister to be special needs and it was completely normal for him. I always stressed to him how much she loves him and if she saw him at school he should always acknowledge her. As you said ” to treat others as you would want to be treated”. He has almost always been tolerant of his sisters disabilities. I now baby sit my 4 yr old niece who does have questions from time to time. Honesty is the best policy. Why doesn’t she walk, why can’t she talk well, why does she use a wheelchair ? She recently asked if “E” could read or write, I explained that she couldn’t but one day soon niece would be reading and could read to her cousin. She thought this would be great to do. Positive things come from all our children, they are all special in their own way.

  3. I have a special needs sister in law. I don’t know what she has–her parents never really investigated it. For genetic purposes, I would like to know, but it is a really touchy subject for the family. I don’t think my husband or his brother really think there is anything different about their sister–just that she is spoiled. (She graduated high school with a special ed diploma.) My husband is the oldest at 37, special sister in law is almost 34 (mentality of about 8-10 yr old) and younger brother in law is 31. He thinks that something happened to her at school because she was always his older sister until she started in school–or basically until he caught up with her mental age–about the time of school… and then he passed her up. It was never really talked about in their family, and any time me or my brother in law’s wife bring it up, it is met with resistance and uncomfortable discussion and denial by parents and the brothers. It is just hard to understand. I think if I had a child with a special need, I would learn about it and figure out what they have so I would best know how to parent them–as I do with my own children. I learn about how to parent a boy or a girl, etc. I don’t really know. My own kids now have passed her up in mentality as they are 15 and 12. They can’t figure out if she is a kid or an adult. I talk to them about it some, because I know no one else will. This is a very real topic in our family–and is not handled well in the extended family situation, unfortunately.

  4. I used to worry about this too. My two oldest boys are 8 and 6 and both have Down syndrome. My daughter is 5 and we have an 11 mos old. My daughter has yet to really see a difference and the ones she does see she just states matter of factly.

    She will say, Kai and Peter don’t talk yer, but I do. And then she said And I like tortillas and the boys don’t!
    She’s been in preschool that was predominantly children with DS and this year with all typical children. I kept expecting the question, but it hasn’t come.

    Because she will be starting Kindergarten next year, as will Kai(Peter will be in 2nd), I’ve started talking to her in short conversations about it. I’ve just told her that they have Down syndrome and sometimes they might take a little longer to learn some things. She asked if she had Down syndrome too, and I said no, but you have blonde curly hair. Their Down syndrome is just a part of what makes them who they are.

    Then she asked if she could have her own poster with her picture on it for the Buddy Walk this year. Of course, she can.

    I think you will be surprised at how your other children will perceive it. As for other children, Peter is a celebrity at school. Everyone wants to give him high 5s, say Hi or have him next to them in activities. Melts my heart.

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