Tuesday, April 17, 2012

Tuesday Tidbit: How to Relate When You Can't Relate: Some Tips for Connecting with Parents That Have Children with Special Needs

Have you ever wanted to be supportive to someone but didn't know what to say? I had a friend carry a baby in her womb that she knew wouldn't live. A close friend of mine is currently going through a divorce. When a friend goes through a trying time, I know they need my encouragement and support. Unfortunately, there have been times I felt inadequate as a friend because I just didn't know what to say. I wanted so badly to relate. I wanted to be there for my friends, but how could any of my feeble words encourage someone walking a road that I have never walked?

Here are a few things that I recommend if you want to relate to someone that has a child with a special need but haven't been through the same experiences.

1.) Ask questions. 
I really like it when people ask me questions about Levi. Want to know when we expect him to walk or if he'll grow out of his breathing difficulties? Just ask. Several people have! I like that they are not afraid to ask, and I enjoy the opportunity to teach someone something new. It gives me a chance to be an advocate for my little boy.

2.) Interact with the child.
It sounds silly now, but when he was first born, I worried that people would be afraid of Levi. It means a lot to me when people want to interact with him. I love it when people come over to say hello and give him high-fives when we walk into the church building. When he gets older, he may not have speech that is easily understood. If that is the case, it will mean even more when people make an effort to interact with him.

3.) Be there.
Sometimes you don't need to say a word. Just listen. Be around just the same as you've always been. I have had people overdo it with positive predictions of Levi's future, and that is just not necessary. We don't exactly know what his future holds, and that is perfectly okay.

4.) Get involved.
Simply standing behind Levi's banner at the Buddy Walk has been one the best ways our friends and family have supported us. Very few words were spoken on the day of Levi's first Buddy Walk, but everyone there spoke volumes. Through their very presence, people were saying, "We are here for you. We may not understand what's ahead, but we are right beside you." I get choked up just thinking about it.

My brother is now coaching a Challenger League baseball team for kids with all types of special needs. We've had people give books and toys to help Levi work on his therapy goals. You may even want to do some research on the special need. After the Buddy Walk, a family at church told me they looked at some information online to help educate one of their children that was asking questions about Down syndrome.

A friend at church about ran me over this Sunday to find out if I had read Kelle Hampton's book, Bloom: Finding Beauty in the Unexpected, which just came out. The book is a mother's story about having a daughter with Down syndrome and all the beauty it brought. My friend said that after reading the book, she feels like she can understand me better and has a better understanding of Down syndrome. She even told me she was kind of jealous of me for having Levi. (Which is not the first time I've been told that!)

While it means a lot to have friends that also have children with Down syndrome that can truly relate, I have also been blessed with friends that have been comfortable enough to step out of their comfort zones and make an effort to support us even though they aren't in "the club." I am so grateful for the way our family and friends support us. Thank all of you for the multitude of ways you love our family. We are truly blessed!

And because I don't like writing a post without including a picture...
I was walking through the kitchen last night and was surprised to see what Levi decided to do with his time. Pretty cool, Dude!

So, those of you readers that have children with special needs, what advice would you add? I'd love to get some discussion going in the comment section.


Leah said...

Very good recommendations. You're right that this is so hard for people.

Becky said...

I think you hit all the good points here. I had read somewhere in another person post a while back that if a person says something to the extent like "I cannot even imagine what you must be going through" it confirms what you are feeling and allows them to say something that is not awkward. I liked that. I do agree about the "just ask questions too" because I love answering questions. Education is the key to breaking down stereotypes and walls, and with lack of education is where fear and ignorance stem. In the education, comes "interact with my child." That is the best education of all! Great post...

Leah said...

Great advice! :)

CM said...

What a great post! The ideas I most related to were being involved with our kids - when we are in our group of friends Bailey is always being held by someone or another. It warms my heart! But oh, the Buddy Walk, and families coming to support us that we had no idea would want to - Bailey had a huge team and you are so right, it spoke volumes without a single word spoken! This was a fabulous idea for a post!

Karrie said...

What a great post, April!!! I am going to share this on my FB page! I have lost a few friends because of THEIR uncomfortableness with Madi. If they had just done some of the things that you suggest, they would have realized that Madi is NOT contagious and we are doing just great!

Thanks for doing this post!!!

Marci said...

Great post! I hope you don't mind if I share it...?

Laura said...

I've bookmarked this particular post because I know I'll want to reference it in the future!

April Vernon said...

Well, I changed something in my comments settings and now I no longer have the "reply" link under each comment! Grr...

Thanks for the feedback, everyone!

Good points, Becky!

Marci, I would LOVE for you to share it!! (And thanks to the rest of you that have done the same!)

I appreciate you all so much!

Jenny said...

Excellent post! Wish I could have sent this out to my family and friends when Russell was born. After we had Russell NO one talked to me about Ds...No one asked what it meant for Russell...That made me sad...I wanted people to care enough to ask about things and was hurt when they didn't...Now two years later I realize they were probably all scared to ask questions or say the wrong thing.
This post was perfect :)