Three Kinds of Special Needs Parents and the Groups we March in

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In this special needs community we have lovingly cultivated, there are three kinds of people, in three very different groups.

I type this only to paradigm shift anyone on the ledge of two sides.

Special Needs Parents find themselves here, there, or coasting.

The Gratefully Coasting Group

The Gratefully Coasting Group is this: things are good, you continue with the systems and supports that are working and you look up every now and again to thank your lucky stars.

The Candle Vigil Group

The Candle Vigil Group is this: you are hopeful that the lady handling your paperwork is passing your perfectly filled out forms off quickly, and you hold your breath for sustainable help for your ever so worthy kid.

The Grab the Torches Group

The Grab the Torches Group is this: I asked for help, come hell or high water, I will motivate you to assist my kid and everyone on earth like him/her, you will hear my cry and help now or I will show up with torches and troops of folks demanding you see us.

The thing about a voiceless, overlooked and often under served community is that you become hardened, or passed by if you don’t find just the right people at just the right time.

I have lined up in both Vigil and Torches, more over the past few years than I could have ever imagined.

I yearn for Gratefully Coasting, and I promise, if I get there, I will thank my lucky stars.

I will tirelessly assist and inspire, motivate and advocate for those other damn lines! I just promise I will.

In the mean time, I will try calm and kind hoping that being vigilant takes us further.

It’s hard to be in a hard place and know the worthiness of our kids while help reaches our community and kids, slowly. The help comes largely through private business channels you have to fight to be in and qualify for.

But I remind myself, a polite plea works best.

While it feels like three dozen people touch the paperwork for only a moment on the way to get my beautiful kid help. I will tug their hearts, follow our file and try not to make them frantic.

I have had my share of ‘Grab the Torches’ lately, but I will try the better style as often as I feel the fire building inside.

If you are a special needs parent, I offer my best lines below, use them with grace.

I mix a good helping of “have you seen a little casket” with “check out this mermaid our on live while you pass her paperwork across your desk and to the right people with the power to help soon!”

And I try to always add a little, “you ever had those days, (fill in first name), where you feel clouded and you can’t find the words? You have an ache you can’t get rid of and the day just keeps getting harder?

{Let her sigh at the thought and then agree}

I gracefully remind them that my beautiful Seeley wakes and lives in that Ville.

If she helps, hustles us along and is impacted by her own speed for us, she could help lots of families behind us, every day.

I wish you well as you navigate the Special Needs Mom World of Vigilant Vigil and Grab the Torches.

Remember, there is a line for Gratefully Coasting, and the view from there is spectacular, I know when you arrive, you’ll be grateful beyond measure!

Written by, Rachel Flanagan

Rachel Flanagan lives in Minnesota with her husband Billy and their daughter Seeley. Rachel is creative, motivated and is more than willing to learn – she is sleepless, funny and is always found with a cup of coffee. The family explores Seeley’s complexities and magic in a blog and page called FlanaVille, Billy has a podcast called Dad Talk from FlanaVille and in the coming year, Seeley will be starting her YouTube Channel. Rachel has been published on Finding Cooper’s Voice in the past, she writes as she speaks, real, raw and from the heart (with a few colorful cursies). Grab an espresso, and try to keep up with the Flanagan’s!

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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