We discuss our children’s diagnosis and challenges like most parents discuss refrigerator art or the dangers of Tonka toys cluttering the hallways.
We know better than to fill up our calendars with permanent marker; we prefer pencil instead.
We linger just a little bit longer when we hug, because so often those extra five seconds can mean the difference between a really bad day and a heart full of hope.
We stick together when one of us falls apart, and we stay after to help pick up the pieces.
We’re too busy gossiping about our children’s medical entourage (“I can’t believe Dr. Thompson hired that nurse that was fired by Dr. Smith. And did you see the way she was holding that syringe?” *insert eye-roll here*) to care about the ongoing antics of the really desperate housewives in our neighborhood.
Some of us turn to extra carbs, extra wine or extra shopping to get through the tough times. Some of us even inhale. But we never judge. Ever.
We take turns wondering if the perpetual crap will ever stop hitting the ginormous fan that is our life. The rest of us bring over extra carbs, extra wine, or extra incense.
We have two kinds of friends: the ones that can keep up when the conversation consists mainly of abbreviations (“I had to leave the IEP before we got through the BIP since the BCBA screwed up the FAA and now we’re asking for an IEE. FML.”) and the ones that can’t (“WTF????”).
We strive to always be allies with those working with our children; we rely on their expertise, their passion, their professional insight that can often shed light on an otherwise baffling situation. But God help anyone that messes with our kids by undermining their efforts, sabotaging their intellect, and refusing to see the value of their strengths and the potential in their abilities by providing sub-par services and diluted dreams.
We aren’t any more special than other parents. We’re just more likely to do a face plant into our plate of spaghetti during dinner (hey, you’ve gotta sleep sometime) and save the noodles stuck to our forehead (hey, you’ve gotta eat sometime).
We aren’t jealous by nature (usually). But there are moments when we come across situations that have us seeing green, like when people brag about how they get to go pee alone, whenever they want to. Whatever.
We have more charts than anyone you’ll ever meet in your entire life, guaranteed. If there were ever a chart competition a la The Olympics, we’d be gold medal contenders. If charts were the only thing standing between us and a zombie apocalypse, let’s just say, we got this. We have feeding charts, potty charts, behavior charts, ABC data charts, sleep pattern charts, growth charts, phases of the moon charts, therapy charts, and charts that help organize all the other charts. But there’s not a chart in the world that can keep track of our car keys, especially when we were supposed to be at speech therapy 5 minutes ago (according to the chart, of course).
We dare to hope even if it means our hearts risk being shattered into a million pieces.
We don’t give up or give in, choosing instead to cross the finish line – no matter how long it takes, each and every time – because our children are worth it.
We can hear the R-word being used from across the room and regardless of how many times we have heard it in the past, it still feels like a solid punch to the gut that knocks the wind right out of us.
We think that when people tell us we have the patience of a saint, they must be talking about that one saint who was known for being extremely impatient. That, or the bar is set incredibly low.
We wish for everyday things, like five minutes of extra sleep, five pounds miraculously missing from the scale, five extra dollars tucked into the pocket of our jeans. But we also wish for big ticket items, like the perfect IEP, a brilliant doctor who knows we know our children best (that’s the brilliant part), a more accepting, accessible world for our kids, and last-minute miracles no one else would dare to believe in.
We make mistakes
We do better
We are blemished
We are tired
We are in desperate need of a shower
We are madly in love with our sons and daughters
We are forever changed for the better
We are special needs parents
39 Replies to “We Are Special Needs Parents”
Oh yes we are!!! This post made me tear up. Thank you.
This. This is perfection. Thank you….
This was perfect. I saw it posted by a friend on facebook and I just had to comment. Thank you for so beautifully sharing our truth.
Thank you so much Dawn
So, so good… <3
Coming from you, that means EVERYTHING!
You hit the nail on the head, lady.
It was my pleasure, lady. =)
I have two children with autism and I love this! 🙂
So glad you enjoyed it Tamie!
Wow, I couldn’t have said it better. You shared my story as well. God bless you.
I’m so happy to know you were able to relate Shannan!
Oh, yes, Jo! Perfect, awesome, beautiful. This needs to go viral.
(Now I know what you were talking about earlier, about when the writing just flows.)
Thank you so much Varda! I would love for it to go viral. *wink*
PERFECT! Yes! This made me cry and laugh and nod my head in agreement. Great post, Jo!
This is amazing. I’ve shared it everywhere. It could not be more perfect. Jo, it’s a privilege to know you. I’m amazed by y0ur ability to say things that I feel in the depths of my soul.
Love, love, love this! You captured us all perfectly! I am sharing this with all my special needs parent friends and family.
Yep. *sniffles, wipes wet cheek* I less-than-three this so much.
Perfection! You said it all. Thank you for posting this.
AMEN, Sister! We ARE special needs parents. Tired and proud!
Wow, this came to me on a day I really needed it. Thank you for spelling out our truth so beautifully.
Love IT! Thank you for this.
Yes we are! Thank you, this is beautifully written.
All true, and beautifully said. Thank you so much for this!
Wonderfully written and so, so true! 🙂
This is beautifully written. Can you tell me what you mean by the “R-word”?
Hi Leslie – The r-word is short for “retard.” It is a hurtful word often used with zero regard for the population is aims to describe.
I was thinking that is what it was but wanted to be sure. I am an Assistant Principal at an elementary school. Would you mind if I shared your blog with staff? I am thinking it could serve as a powerful reminder to those we serve.
I just re-read my post…clarification…the REMINDER is for our teachers to understand the complexity of being a parent of a child with special needs. The way I first wrote it could be misinterpreted as a reminder to the parents. Pretty sure they don’t need us telling them how challenging their days can be.
Hi Leslie –
No, I understood what you meant! Absolutely, please feel free to share, as long as you credit the source as me. Thanks!
that is a curse word in our home. not allowed to be used ever
Just f-ing perfect!!!! You said is all!!!
I have two of the most fabulous grandchildren in the world. They have their 13th birthday today. We are lucky to have such wonderful people in this world.
All I could do was smile while reading. You understand me, my friends understand me and I’m forever grateful to have them, my son and your blog to read. Thank you. 🙂
Wow! You brought tears to my eyes as well as made me chuckle. I am PROUD to
be a special needs parent! I feel honored that God chose me and trusted me with
my miracle. Thank you for sharing!!!
I have to say first time on this site and it will NOT be my last. Very well done/said/everything. I have two special needs boys 9/11, I would not change anything about them. I love everything about them.
What you shared resonated with me in a way that felt as though you had been in my dining room! The part about writing things in pencil, having some friends that get it, and supporting the professionals but defending your child are all part of my life!
Thank you for sharing!!
Thank you so much for reading!! So glad that you were able to connect with it. =)