This Little Miggy Stayed Home: Miggy's Guide to Navigating a Special Needs Encounter

Wednesday, August 19, 2015

Miggy's Guide to Navigating a Special Needs Encounter

Hi to all my new readers directed here from A Cup of Jo. Just a few things, first my daughter's real name isn't Lamp, it's an online blog alias. Phew, right? In addition to this post for Navigating a Special Needs encounter, I also have a more recent post about talking to your kids about disability here. You can read a quick intro about my and my family here, and search my archive of over 200 interviews with special needs families and individuals who have a disability, in what is undoubtedly my most popular series the Special Needs Spotlight. Lastly, feel free to follow us on Instagram and thank you for checking us out! XO --Miggy

If you want to hear something bananas, here it is: next week Lamp starts kindergarten.

This is both exciting and terrifying, as any mother understands. That being said, I think the nerves get turned up a few notches for us special needs moms. Not only am I trying to prepare Lamp for a new school and the beginning of her academic career, I'm trying to help prepare her to deal with the extra challenges, both physically and socially, that she will face concerning her limb differences. Additionally, I'm helping to prepare and educate the school and other students know how to talk about and interact with her as well.

One thing I have known for a while is that when Lamp started school I wanted to do some sort of presentation on the first or second day that would address differences and disabilities to all the kids at her school. I wasn't sure how or what this would look like and I also didn't know how open the school would be to having something like this happen, but I knew it would be important for both Lamp and her peers. With the help of Lamp's therapists and pre-k teachers we have a hospital representative coming to her new school to do a quick 10 minute presentation to each grade level telling them a little about Lamp--the correct terminology, her power chair, other tools she uses like special utensils and adaptive scissors as well as acceptable and unacceptable language/behavior. I can't tell you how happy I am that the school was so receptive, because apparently some schools are not receptive to this type of educational experience.

In general back-to-school is a wonderful time to talk to kids about these things. I've long considered this post by Glennon Dolye Melton as the holy text of back-to-school talks. It's amazing.

BUT, if I may be so bold to say, it's not enough when it comes to our special needs and disabled kiddos.

See, a lot of what we teach our children about kindness and being inclusive flies right out of their brains when they see someone who is noticeably different. Especially when their young and inexperienced minds have never encountered someone with differences before. It's not because these kids are mean and want to make fun of a child with special needs. It's because they have questions! And concerns! And how's and why's and all sorts of stuff. It's really, really hard to remember to "be nice" when you're also trying to comprehend wheelchairs, limb differences, atypical movements or sounds, leg braces, walkers or any number of things that set our special needs kids apart.

Kids are curious. And that's OK. But curiosity can quickly turn to exclusion, discomfort, and even cruelty if left in a vacuum of ignorance. We must teach our kids about differences.


It has taken about 5 years for me to finally feel like I have a rough formula for talking to kids about Lamp. It's not an exact science--every kid thinks and reacts differently--but for the most part, it works really well. This is what I shared with the teachers at Lamp's new school and I thought I'd share this for those of you wondering what to do when your child comes across a child with special needs and you're not really sure how to handle it. Long time readers will know that I ask every single parent I spotlight what they would like to tell the world about interacting with their child. I discuss this in Lamp's spotlight as well. This is not a new topic around here, but this is a much more simplistic breakdown. Please note that this is mostly meant to be used with young children approximately 8 and under. Older children should hopefully start to know a little about boundaries and I would not consider having this type of discussion with an older child (or especially an adult) in front of Lamp appropriate.

1) Questions are OK.
The emotions that a child feels when seeing or meeting another child with special needs can range from curious to nervous or scared to just plain confused. Let your child know that if they have a question it's OK. Try not to shush them and turn them away from the child they just encountered--this only reinforces an exclusionary mentality. If your child points at Lamp and says "What happened to her arm!" my suggestion would be to get down on their level and have the whole "some people are born differently" conversation right then and there. Reference friends or relatives who have a wheelchair, walker, glasses, etc. I know this is the hardest part because we think the kind thing is to shush our children and walk away. But walking away implies that there is something wrong with special needs kids and we don't interact with them. So please, do your best to stay. Remember, Lamp knows she has limb differences--it doesn't hurt her feelings to have it explained in front of her. What does hurt her feelings is having a rude interaction and then having that potential playmate taken away before things are set right so to speak.


2) Reinforce kindness
While it's important not to shame kids for their curiosity, it's also very important to let children know in no uncertain terms that certain things are not OK. It's not OK to point, stare, laugh, call names or use mean words. Even if your child does this innocently--"she's weird!" "Yuck! Why does her arm look like that?"--please correct them. For example, "Weird is a rude word and rude words hurt people's feelings," or "that would really hurt your feelings if someone laughed at you." It can be said kindly, it can be said firmly but it HAS to be said. Curiosity can quickly turn to cruelty in young children if left unchecked.


3) Find common ground
Once your child has some understanding that some people are just born differently now is a great time to find some common ground. "She may be a little different, but she's mostly the same as you. I bet she likes a lot of the same toys/games/food that you like." You can then ask the child or the child's caregiver what they like to do. "Do you like to eat ice cream? So does she? Do you like to play with toys? Wow... she does too!" Establishing this sameness is KEY. This is when the light goes on and children realize, oh... she's just another kid, like me.


4) Emphasize strengths
Now this one won't be as easy to do if you don't know the special needs child personally, but as Lamp's mom I try to emphasize that she is DIFFERENTLY-abled. Yes there are some things she can't do, like walking which is why she drives a power chair, but OMG, she can drive a chair! Or I always say, "You want to know something really cool? Lamp can write with her feet!"  This is when you see the jaws drop--literally. Again, it's super important for kids to understand from a young age that disabled really means differently-abled.

A couple notes: While I usually advocate for staying and building bridges, sometimes it is appropriate to walk away with your child. For example, if your child is really struggling to accept the idea that "they were just born that way" and they keep pointing, staring and saying innocently rude things it's a good idea to apologize and walk away to have a more in depth conversation with your child out of ear shot. Also keep in mind that like most really important things in life this isn't a one time conversation! Which is the main reason I don't want children to feel shame for asking questions. If a child is shamed when they ask a question, they will soon learn not to ask questions. Which means they will loose out on really valuable lessons and conversations that need to take place.

So there it is! I know these can be hard situations to navigate, for most of us special needs moms just seeing you try and make an effort will mean a lot to us. And it will be meaningful for your children as well. Remember, the end goal is to bring down the walls created by ignorance and social stigma and allow for real bonds of friendship to be formed. I really hope you take the time to read, share and implement this with your kids. I hope you share it with your friends and family too.

Small things = big change.

We can do this!

Thoughts? Questions? Has anyone ever had an experience like this that they didn't know how to handle? If any other special needs moms want to chime in I'd love to hear your suggestions as well!

22 comments:

  1. Thank you Miggy! As always you have a knack for words and timing. We just encountered a situation with my 5 year old son at the pool. He was truly scared and hiding at first but thankfully the little girl was very accepting of his distance and waited until he was more comfortable to play. I used some of these points but wish now I would have had the foresight to encourage questions.

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    1. Well I'm glad this is useful information. I'm sure you did a great job. Of course there's no one right way, but I think having some pointers is always helpful.

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  2. Thank you for the tips! I am glad the school was willing to let you come in! As a teacher, I would love that. Just this weekend, my boys (4yo twins) saw a little person for the first time. Navigating their questions and attempting to get them to stop staring and giggling at the way he walked was quite the adventure...especially since we were at the county fair in our small community and we kept seeing him, they had different questions each time, or would repeat our answers (loudly, of course) "he walks different, but that's okay, right, Mom? He's still a kid, like me!" 😊

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    1. Oh gosh we have totally been there! And guess what, it was LAMP doing the pointing/starting at some little people. So even we have to have these conversations! It was an ironic pot-calling-the-kettle-black moment, but a good reminder that Lamp is like most kids in this respect and needs to be taught how to handle it as well. Glad you and your kids were able to work through it. :)

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  3. Anonymous4:46 PM

    Thanks for posting this. This definitely will be a huge help to teach my 3 year old.

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  4. I'm a rehabilitation counselor (my job is to help people with disabilities live and work independently), and because of my job, my three year old sees and encounters all sorts of ability-diversity. If I know that we're going to be somewhere that has a large group of one kind of people (people who use mobility aids, hard of hearing/Deaf, Down syndrome), I will pull up some YouTube videos so she can ask questions and we can talk about things in a safe environment. I started this when she was about two years old, and she's largely unphased by things.

    One time, I hired a baby sitter, and it sort of slipped my mind that she only has one arm. We don't get sitters very often, so in my nervous "Your sitter will play with you, and you'll have so much fun, and mommy will be back soon" chatter, I failed to mention her limb difference to my daughter. The sitter came in and they talked for a minute. Then, I hear my daughter ask, "What happened to your arm? Were you born that way or did it fall off?" I almost died - ugh my worst nightmare! The sitter responded that she was born that way, and my daughter responded, "Everybody's different. Whoever cares."

    I know that things will get more complicated as she gets older, but I guess the point of all of this is that the more kids see differences, the less scary they will be. I don't think she ever interacted with anyone with a limb difference before, but since she knows people who use braces to walk, people with pale skin, people dark skin, people who use hearing aids to listen, I think she realizes that humans have different bodies. Also, the internet can be such a resource. When her cousin started "track" and she didn't know what that meant, I tried to show her examples of videos and pictures of all sorts of athletes, including para-olympians and special olympians. We can't possibly expose our kids to every kind of person out there (and to do so in reality seems srt of tokenish), but we can at least introduce differences thorugh books and media.

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    1. Theresa--This is so great that you've talked with your child in such depth. And exactly what you said, "The more kids see differences, the less scary they will be." Amen. One HUGE reason I'd love to see more kids with visible disabilities represented in the media.

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  5. This post belongs in a magazine. Great job as always, darling.

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    1. Thanks love.

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    2. I agree, it would be great to see this shared broadly!!

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  6. Anonymous1:58 PM

    I am so excited for Lamp and when did PSP grow about 2 feet!!!! That girl is so cute and all legs!!! marsha@tubbslanefarm.com

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    1. I'm excited for Lamp too.

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  7. Probably the best summary of how to deal with awkward encounters! You hit all the major points without me wanting to scream and yell :) YAY for Miss Lamp! Can't wait to hear how she does! xoxox

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  8. My son is 10.5 months old and we are starting to explore the larger world of playmates at the playground. I have wondered how best to approach visible differences in others with him, and this strategy does it with acceptance and kindness while addressing curiosity -which are also great ways to start friendships. Thanks!

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  9. My son has to wear an eyepatch part of the day and now that he is getting older he has started noticing people look and ask questions. For awhile now we have been patching and going out in public and I'm surprised how many adults also ask questions. I hate comments about pirates- my son hates them and he will tell me emphatically that he is NOT A PIRATE!
    I think most people mean well obviously but it can get hard on my little guy and me if I'm honest.

    Can I ask you and other mom's some advice? What do you do when adults ask questions?
    It's been happening much more frequently. I agree about the boundary thing- but what is a polite way to handle this?

    Thanks, your blog is great and I just love reading about all the awesome kids and families.

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  11. Wonderful post! Thanks so much for breaking down a really difficult topic, how to talk to others (especially children) about your child's special needs. Both of my sons have autism of varying degrees. I've been in many situations where I've stuttered and stammered over how to talk about it to others that it finally motivated me to actually sit down and write it out on paper so that I could articulate it better to others. This article is spot on and so helpful. I'm going to share on my blog page as well as in the special needs group I'm the admin in.

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  12. Anonymous6:06 PM

    Thank you for your insightful and thoughtful post. It would also be great to hear about interacting with children with special needs that are predominantly behavioral. My 5 year-old daughter has an autistic classmate who has no apparent physical differences or disabilities.
    She understands generally that the child is different from her in some ways. She acts kindly toward her much of the time. However, she can be impatient or become frustrated with her and has a limited understanding of her diagnosis. This may be partly because I struggle to explain it to her without magnifying the differences. Any insight would be much appreciated.

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  13. Thank you for writing this post! It is something I have always wondered about and hearing your perspective is so helpful. Great ideas, thank you!!

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  14. I want to thank you for this. I learned a lot and it is beautiful. This message of the value and dignity of all life is so precious and needs to be spread!

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  15. This is wonderful, thank you! I love this and find so many people struggle with what to do. I also appreciate the caveat for when things don't go well and there may be a need to walk away. I work with children with special needs and ironically, even they may be the ones pointing and staring and saying rude things at times. My favorite part of your article is that regardless, it is an ongoing conversation. You and Lamp sound amazing.

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  16. Anonymous1:35 PM

    Is anyone aware of a series of youtube videos that can help teach these concepts to children? I am just looking for additional tools as a primer as we haven't yet had these encounters. My children will be entering kindergarten in the fall and it would be great to prepare them for experiences with a more diverse group of kids using visuals, videos, etc.

    thanks!

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