Last weekend there was a virtual conference for parents with Lucy’s syndrome (BBS).

I was asked to be a one of the panelists in the session “What I Wish I Had Known.”

It was geared, of course, to parents with Lucy’s particular syndrome. But I wanted to share my thoughts here because I know there are all kinds of special needs out there, seen and unseen, and I know so many can relate.

I shared two thoughts, which were really more of “What I’m Glad I have Learned,” because gosh, we sure learn some amazing things along the way as we maneuver this parenting deal, right? Special needs or not!

These two things have made a pretty big difference for me as well as for Lucy.

Two Tips for Raising Kids With Special Needs:

1) Never underestimate the power of informing.

In informing and educating others, you create a village.

And we all need a village, right?

Years ago a sweet little boy in Lucy’s elementary school classroom taught me that even kids in Lucy’s classes at school could be part of her village if we informed them about what she was dealing with.

I was at volunteering at the school, walking down the hallway from the library to the classroom with the line of kids in Lucy’s class, and this little boy tugged on my sleeve and looked up at me with such sincere, questioning eyes. “Don’t be mad,” he said, “but I just want to know why Lucy’s eyes shake a little bit.”

I told him of course I wasn’t mad, and that I had actually been trying to figure out a time when I could come talk to the class about what was going on with Lucy. I knew kids had questions, and I figured it would be so much better to inform than to have kids just wondering.

He looked up at me with those big eyes again and said, “can you tell us right now?”

He was ready.

And it was just the encouragement I needed to brainstorm with Lucy’s teacher and also her Braille teacher about taking some time in class for a little explanation of Lucy’s syndrome. The Braille teacher took that idea a notch further and decided she would bring a Brailler so she could teach kids to write their own names in Braille:

And she brought goggles so the kids could put them on and get an idea for how Lucy sees the world.

We had Lucy help us with the presentation and let the kids ask questions.

It empowered the kids. It empowered Lucy.

And most importantly, it helped build her village.

We ended up doing that little presentation every year for each of her elementary school classes.

It’s been trickier in junior high and now high school, but I’ve always tried to make sure at least her teachers are aware of the full picture of what’s going on.

Knowledge is power.

Don’t worry about holding others back.

There was a time, also years ago, when I was talking to a new friend about parenting. She had an adult daughter with Down Syndrome and she drew me in with her open and honest kindness.

Somehow in the conversation I started telling her how I worried so much about Lucy holding friends back. She was getting to the age where her vision was really hindering what she could do, and she had some of the kindest friends who were willing to “stay back” with her. I just didn’t want Lucy’s needs to be a burden to them.

That mother/friend looked me right in the eye and said, “Don’t you ever worry about Lucy holding others back.” She went on to explain that over and over again through the years she had acquaintances and friends of her daughter come back to her and express such gratitude that her daughter was in their life. That that daughter of hers had taught them to look outside of themselves. That she had power and had taught them such beautiful lessons just by being their friend.

I can’t tell you how many times I have thought of those words.

They have rung in my heart and my mind as I’ve tried to help Lucy maneuver her world. I remind myself of them when I’m worried, when I’m heart-sick, when my heart is breaking for all that she has to manage.

Even thought her eyes are losing their light, she is light.

She has taught me so much more than I could ever teach her.

She has so much to give. I just need to not hold her back.

And let her shine.

More links to thoughts about raising kids with special needs:

Lucy’s diagnosis story

Doctors and Experts

The Children’s Hospital

YOU are the Expert

Everyone needs a “Mrs. Twinkle”

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  1. I love the building the village bit. It’s super hard to let people in and be vulnerable – paradoxically, it requires a lot of bravery!

  2. I really loved this post and could relate so much. My 22yr old son was born with rare birth defects that affect various systems of the body as well as being premature and low birth weight. He required surgery several days after birth, but at the time, babies his size were not given the option for surgery to begin the necessary repairs needed to live. We had to fight so hard to get them to find a doctor/hospital to take Sean. Even then, we were not given much hope for him to live to age 1. We did find a support group, who helped so much and continue to do so as he is adult, which are not very many in the world with his condition. It is amazing how the world of medicine has evolved in the 22yrs and how blessed we are to have him in our lives. I became a nurse to help other parents who are in the same situation we were. We now are part of the village to help others not have to struggle as we did.

    1. I love this, Shelly. What a beautiful story. So grateful you were able to advocate to get what your son needs, and so grateful you can help others and be part their village. I’m sure it is helping so many. Sending you, your son, and your “village” lots of love.

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