by Rachel Flanagan
In this 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 them selves here, there, or coasting.
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, 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, 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 SN 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!
Upon posting this to our Facebook page, a dear friend & fellow special needs parent reminded us that this often tumultuous life requires just enough torch, to light the way. I agree completely!
My goals are renewed and refreshed.
I hope we find just the right balance for us and a whole bunch of gratitude, it’s my wish for you as well!
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. 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 Flanagans! You can follow us on Instagram too - @FlanaVILLEthree.