One of the most beautiful parts of parenting a child with special needs is watching the village that forms around them. As Lucy moved into a new classroom this year, her awesome Braille teacher and I had another opportunity for teaching kids about disabilities and inclusion. Just like we did last year with her 4th grade class, we got to help peers understand Lucy’s visual impairment as well as her BBS syndrome, and what it means to support someone who sees the world differently.
Building a Village of Support
This past summer I met a wonderful woman who has two grown children with special needs. I can’t quite explain it, but when I meet someone like that it immediately feels like home. After she told me a little about her kids she asked about Lucy. We hardly knew each other, but my eyes welled up as I explained how wonderful Lucy’s friends and support group are. Then I spilled out how worried I am about those sweet friends, because I never want them to feel burdened by always looking out for her.
She looked right into my eyes and said, “Don’t you ever feel bad about those who reach out. It will change their lives in wonderful ways.”
She told me how several of the kids who reached out to her children had grown up and come back to thank her for letting them be part of her children’s lives. That thought was so soothing to me. I know there are some not-so-magical parts of reaching out to Lucy. She can be moody and dramatic and stubborn, and when she’s in a chatty mood it’s tough to get a word in edgewise. But that conversation made me realize it’s okay, because there are so many good things that balance it all out for those willing to stick around.
Lucy is one lucky girl. She’s surrounded by a village of goodness on all sides.
Teaching Kids About Visual Impairment
Which brings me to last week, when Lucy’s Braille teacher and I visited her classroom to explain BBS and low vision. Because part of building that village sometimes takes some insight from the inside.
We had done a similar conversation the year before in her 4th grade classroom. Questions had come up about why Lucy’s eye was shaking, why she had a different computer, and why she always got to sit at the front. I told one of the kids asking that maybe I should come in and explain things to the whole class. He was all over that idea, and Lucy was ready too, so we went in and did a lot of explaining. It was a really great experience. At the end of that year, her teacher recommended we do something similar at the start of 5th grade so everyone could be in the know from day one. Sure enough, the first week of school Lucy asked me to go ahead and schedule it.
So I did. And it went pretty great.
What the Classroom Presentation Looked Like
I was nervous going in. I always want so much to explain things the right way and rally that little village of goodness in the class to truly understand. This time Ms. Wells, Lucy’s Braille teacher, took the lead, and that woman is pure gold.
She explained all about vision loss, how it works, and walked the class through the stations they were about to do. Then I got to talk specifically about BBS. When I explained that even though Lucy is losing her vision her other senses are working extra hard to help her, one boy in the front said with wide eyes, “It’s kind of like she has superpowers!” And when I finished he grinned and said, “I think I’m kind of jealous.”
Ha.
For about twenty minutes the kids each got to figure out how to write their own names in Braille, and write a secret code if they wanted to.
They got to experiment with Brailler machines and type their names on them.
They used blindfolds and special goggles to try to decipher things they were feeling in books Ms. Wells brought.
Each pair of goggles simulates a different kind of vision loss. Watching the kids experience even a fraction of what Lucy navigates every day was something else.
Why Understanding Creates Connection
The kids were so polite and respectful. I really hope that little experience will help them feel comfortable asking questions and speaking up when they don’t understand something about vision loss. Because whether they are part of Lucy’s village now, or become part of someone else’s village years from now, that awareness will make them better humans.
I’m so grateful to get to be part of Lucy’s village, and so grateful for Ms. Wells and all the teachers and kids through the years who have been patient and full of love for her.
Because that love makes all the difference.
More Classroom Conversations About BBS
This was part of a series of classroom visits we did as Lucy moved through school. Here are the others:
If you want to read more about Lucy’s story from the beginning, I’ve written about raising a child with Bardet-Biedl Syndrome across many posts over the years.
This is so beautiful Shawni!! And a happy new year to your sweet 5th grader!💕
❤️
What a wonderful way to educate everyone. Love little Lucy x
I love this so much!! I love that the kids got to experience the "stations" and different things Lucy does. It kind of put her on a pedestal to those kids…which is so awesome for her!! That is such a great way to rally support/understanding for her!!
This is so random and not related to this post but what color and brand are your wood floors? 😂
They are Provenza Old World Fossil Stone.
What a great woman to meet and talk to you about the blessings. I worry about this too. I have 3 kiddos with special needs and 2 that are typical. I worry about the burden that may be placed on my typical children when I am gone. But I love her attitude and insight. Thank you for sharing. Can you send her my way, I think I need that same discussion. 🙂
I wish I could! And that I could keep her around here too. She's an awesome lady!
Love this! I was talking to my dad (a physical therapist for children with special needs) about how you love hiking and it's getting hard for Lucy and he had a great idea. A few years ago, he helped a boy who is blind go on the high adventure scout hiking trips by taking two strong poles (you could use curtain rods, wood, really anything) and then you and Dave would stand in front of and behind Lucy holding the two poles on either side of your body. Lucy would stand in the middle and be holding on to the poles with both hands. In this way, she can feel when you step up, down, to the side, etc, but is independent in her hiking as she is just holding on to the poles for guidance and balance, and to catch herself should she trip. This would also work in situations you may not be able to go (for this boy on the scout trips, the other boys in his troop held the poles and thought it was awesome.) Anyway, you may already have tried something like this, but I thought I'd pass it along in case it might help. I love reading your blog, it gives me courage in my own motherhood! Thank you!
This made me smile to think of someone reaching out to help an internet friend. Love this idea!
Thank you so much Becca! We'll definitely have to try that!
I'm a teacher of the visually impaired and love seeing this type of inservice for classmates who are sighted. It's important advocacy work for Lucy and helpful for her friends. If we expect sighted children to know how to be a friend or be helpful to a student with a visual impairment, we need to teach them those skills. It's nice to mix it up each year, you might consider using these short videos in the future:
1. Range of Sight- While at Stanford, Matt, who is blind, was on the archery team. My student has met him before, same eye condition:
https://vimeo.com/24395731
2. Erik Weihenmayer (first man who is blind to climb Everest) and his guide dog- kids are always curious about guide dogs:
https://m.youtube.com/watch?v=Cx4SMPDY76s
Maybe the classroom teacher or the computer teacher at school could follow up with a lesson during Louis Braille Month in January (January 4th is his birthday). My friend created this interactive Braille Bug website, complete with photos and video of Helen Keller, info on Braille and games:
http://braillebug.afb.org
Shawni, you seem super motivated. Have you considered learning Braille yourself? Another friend wrote the book, Just Enough to Know Better, by National Braille Press. Another option is to do it online for free at http://www.uebonline.org. You can learn to read and write UEB (unified English Braille) at this site.
Braille is Beautiful!
Thank you so much for these links and ideas! I'm going to have our whole family watch those videos for Family Night. And I love the idea to celebrate January 4th! And I think learning Braille would be pretty great. I've learned quite a bit through Lucy, but it would be pretty great to study and learn more. Thank you for the information about that as well. I really, really appreciate all these great thoughts suggestions!
Shawni, I love your blog. With all the horrible-ness going on in the world, I just want to yell at the top of my lungs, "Love matters!! Kindness matters!!" Thanks so much for nurturing that feeling here on your blog and in your community. And thanks to the other commenters for being so kind and thoughtful as well!
Thanks ppp!
xoxo
I don't comment, but I read often. I love the part about what a gift Lucy will be to so many by the service and love they share with her. Such a great thought to ease your worries of being a burden. I thought I would share a website that you may want to explore. Somebody above mentioned Eric weyhnheimer – it's his organization called "no barriers"! I am in Colorado and he lives in the neighboring suburb. He's pretty incredible. Last year, I took our young women to hike a 14,000 ft. Peak and he was climbing it with 3 guides and another bling young man. He was training him to hike Kilimanjaro. So inspiring. Thanks for sharing your goodness through your blog!
That is very inspiring. Thanks for the added insight!
Long time reader, first time commenter. Just wanted to thank you for sharing your daughter's experiences with BBS. I am a middle school teacher in San Diego and have a student with BBS this year. Because of your blog, I feel a little more educated and prepared to accommodate her needs.
Love this. ❤️
This makes me so happy. I'm sure she appreciates you more than you know!
This literally made me tear up (my baby is 6 months, and I am still soooo emotional!). You are such a sweet mom, thanks for sharing! Lucy is such a lucky girl to have you.
i homeschool- but this is so cool… can i get information so maybe i can have this happen at my home?
Hey Holly! I'm not sure how to send information because these people live here, but I bet you could google vision educators in your area? Also, you could incorporate some of the things Annie linked, I'm so excited to share them with my kids!
"Superpowers" That made me smile and tear up at the same time. So sweet. ❤️
What an incredible and tender advocate that Lucy has in her mother. This truly inspires me.