200 Interviews || Successes + What I’ve learned

Last Friday was a milestone for this little blog. Last Friday’s special needs spotlight was my 200th interview. Just so we’re all on the same page, that’s a lot of interviews.

One student asked if I could email the site to their grown-ups so they can look at it at home.

THANK YOU for taking the time to create this space and highlight others. They’ve asked if we can see the special needs spotlight each Friday, so we’ll probably have to add that to our routine :)”

Here is another email from a teacher last year:
“I’m a third-grade teacher in Virginia. I’ve been following your blog for years. I love your writing, your family, and your special needs spotlight. I teach a general education class. Our classroom is right next door to Mrs. Kossoy’s class. She teaches students with intellectual disabilities. Each year, students from her class join us for morning meeting and sometimes other times during the day. Also, this school year, I have a boy in my class with hearing aids. Generally, the kids at my school are friendly, warm, and open, but this year, I decided to do a lesson on acceptance. I showed them pictures of your blog. I showed them Lamp when she was a baby and a few pictures along the way. You should have heard them gasp and cheer as little Lamp stacked blocks and slid down the slide. They were so happy for her. Then, I showed them the adorable back-to-school picture. We discussed your family and how she had grown up, to this point, with encouraging words and kindness. We talked about how happy and excited she looked in her back-to-school picture. I then asked them, “What do you think could happen at school that would change her mood, or could make her sad?” The kids said, “Teasing” or “not including” and other things like that. I then went through your advice about how to handle interacting with people that may seem different than you. The students were so serious and alert.

It was no surprise to me that when we created our classroom rules a few days later, the first one was, “Include everyone.” Since then, I’ve seen nothing but kindness to our friends next door, and for the most-part, to one another.

I just wanted to say thanks for the inspiration. Keep doing what you’re doing.”
I’ve also been contacted by occupational and physical therapists as well as physicians asking if they can share my blog–specifically the spotlight– with their families. My answer is always Yes! Of course. It’s a public blog, so please feel free to share with any and everyone. Often these are new special needs families who may need a little encouragement to know that everything is going to be OK, or even families who may want to connect with other families in a similar situation. Which is another benefit of the spotlight, as I have also had parents contact me asking if I could connect them with someone featured on the blog because their child had similar condition. 

And maybe best of all, I’ve been contacted by people who have no direct connection to the disability community, who write to just say thanks for teaching them how to interact, for opening their eyes and for teaching them about a group of people they have previously not thought that much about before.

I don’t share these stories because I want credit for anything–I understand that the blog was simply one piece of the puzzle for these families who found a diagnosis. I share these stories to illustrate the idea sometimes our contributions are going to be big and bold and exciting! But other times our contributions will be small, almost unrecognizable. But by showing up with a small offering, week after week and year after year it becomes something big. (Sound familiar moms and dads?)

And there were many times I thought about quitting the spotlight series over the years. It’s a lot of work and I wasn’t always sure it was making a difference. But every time I would consider quitting the spotlight I would receive an email from someone telling me what a difference the spotlight had made in their life. Mim, the mom who sent me the email about her daughter receiving her diagnosis, was one such email. And it wasn’t just the emails, it was often accompanied by a prompting, or a little nudge from the Universe, that said keep going. So I kept going. And I stopped worrying if the series was going to make a big difference and instead I just hoped that by continuing I was going to help one family or one person out there who might come across this blog and need the information that would be shared here. And that became enough.

That’s one reason these emails mean the world to me. The spotlight being used for educational purposes, especially for teaching young children is why I do this work. Helping other families step into the brand new territory of special needs parenting with maybe a little less apprehension is why I do this work. Connecting individuals with similar special needs so they can have someone who understands what they’re going through is why I do this work. And educating, educating and educating is why I do this work. 

And I don’t just mean educating others. The spotlight has been profoundly educational for me. I promise you I would not have the passion about disability rights and activism I do if it weren’t for the spotlight. Being a special needs mom is educational on it’s own, definitely. But reading other people’s stories, hearing other people’s experiences week after week and year after year is where the education and that passion have come from. I hate to admit it, but when I started the spotlight series I thought I was already “in the know.” I wanted to spread awareness to all of you who had no idea what this life was like. It wouldn’t take long to realize that I knew nothing. I still don’t know a lot, but I know more than I did. Here are some of the things I have learned. 

I’ve learned to be supportive of schools with strict food policies for kids with severe food allergies. This invisible condition may not seem likc such a big deal, but unlike most conditions I feature it is deadly. I used to roll my eyes at nut-free zones whether at school or on a plane (it’s happened.) Never again. I will be the loudest and most supportive advocate for these families.  

I have learned that some families have to readjust meal time altogether, even skipping Holiday meals so that their child won’t feel left out. 

I’ve been given a much needed updated education on AIDS and HIV.

I’ve learned that accessibility is so much more than ramps and wheelchairs. 

I’ve learned that people with limb differences *might* have the funniest special needs stories. Sorry guys.

I have learned that relationships are more important than everything else in this world, always without exception. 

I have learned that ableism and discrimination against people with disabilities is real.

And I have met many, many, many, many amazing warrior mama’s who I am so happy to be associated with. It is an honor.  

Most of all I have learned that every single human being is a gamble and we love them anyway. 

Thank you for your years of support and encouragement for the Special Needs Spotlight. Because of you–your participation and your encouragement–I been propelled to do this week after week and year after year. And like so many things in life, it’s the accumulation of doing this small thing over an extended period of time that has made it so significant to me and so many others. And it is also without a doubt one of the stepping stones that led to my children’s book that will be published in 2019.