On Raising Special Needs Kids

 One of the things I have learned most acutely through the last seven years is the importance, really, the absolute necessity, of having friends who are also raising kids with special challenges. Doing this alone is empirically impossible- the feelings of loneliness, confusion...the inability to relate to people with neurotypical kids. It's a lot. Consequently, I have been so grateful to have a close friend since we moved to Virginia who GETS it. Who has lived it. Whose son is a little further along than mine at this point and can empathize and insert hope into situations. Tonight, she sent me a text as we have been in the trenches helping our son recover from Covid reminding me that it's normal to be exhausted, that our lived experience is so different from so many others, that I need to hang on but it's ok to have feelings of being alone, overwhelmed and, yes, even hopeless sometimes. 

I have her permission to share her words. My dear friend, Kim Rodgers, gives us a small, but very honest glimpse into the world of parenting kids who are outside the mold. I will warn you - these are really raw words. There is no happy, contented words to conclude. Just a glimpse into the challenge. I encourage you, especially if you are NOT a parent to a special needs kid, to read this and seek to empathize. We are a lonely bunch.  

"We are in the shadows of life and the world. Just trying to make it through. 

We are trying not to compare our now to our friends, family's or neighbor's now. Trying not to be jealous of the routine or lack of. Or the trips they take. Living life on a whim verses planned and rigid- because an unexpected change or shift ruins and hour, a day or even a week. The errands that can be run spontaneously. The "normalcy" of school days without IEPs, 504s and behavior issues.

The friends that a neurotypical family takes for granted the level of normalcy that brings to a child's life- friends that come to play and play for hours. Going to a friends house and playing for house. Snacks that don't have to be planned and monitored. Sleepovers, always having a friend in class, at lunch, in activities. 

As opposed to the special needs family that prays every day for someone to just be nice and accept our child for that one day. That they don't get picked on. That they have a nice lunch- maybe even peers that talk to them or include them in whatever nonsense is happening during an elementary, middoe or high school lunch time. That they have ONE friend to play with at recess or that they get picked for a team. That they get an invite to the birthday party, the holiday party. 

Our worlds are so different they rarely merge. And the hardest part is as a special needs parent we are so used to trying to hide in the shadows or stay in the shadows because the spotlights that get put on us are never the ones of the starts but the ones of shame, judgment and disgust. 

So we bury ourselves. Deep. To protect. To survive. Because we aren't in the light as we try to hide. We are all of the tired. All of the hurt. All of the scared. All of the embarrassed. All of the pain. And all of the worry." 

Thanks, Kim, for your honesty. And for always, always reminding me we are not alone. 

Rumors of My Death

Rumors of my death have been greatly exaggerated.

Ok, ok, I'm actually fairly certain that those rumors don't ACTUALLY exist, but I certainly have gotten a number of concerned emails and texts checking in if I am alright...all because I left Facebook. I did it with zero pomp and no circumstance. No pious letter goodbye or parting darts at what made 2020 so extra crazy. 

One day I was there and the next day I deactivated.

Friends, I'm ok. I promise. 

There comes a time in a woman's life where she just has to, if you will pardon the language, get past the bullshit. I don't say that to debase how everyone else chose to use Facebook.  I say it to call out how I was using Facebook. As I tell my kids just about every day (erm, hour), "not you, not your business. You are only responsible for how you react to the situation."

Let's just say that it was increasingly clear that I wasn't reacting the best way that I could to what was swirling around me.

No, I didn't create an echo chamber. I didn't unfriend people with whom I disagreed. I got into hearty debates and I generally stayed out of the topics on which I have no business commenting. (For pretty much all of that second category, the number is significantly higher than we pretend it to be.) 

The bottom line is that I let it consume me. Distract me. Inform me. Infuriate me. I set terrible limits. I allowed way too much anxiety in my life. I tried to keep up with way more than any one person should actually be able to do. 

One day I said enough. (My husband, if you are wondering, was DEEPLY influential in this decision. He still barely has a Facebook profile.) 

I realized about a week into leaving after a few frantic texts from our Swim Team President that there were some unforeseen consequences to my hasty departure- namely, that thousands of pictures I had uploaded to our site as the swim team photographer were now inaccessible. After a little back and forth, we figured out a new way to store and share pictures and I'm working on that in my spare (ha!) time. Crisis averted. 

And as far as I can tell, what I am missing is a myriad of people's opinions on news articles from sources that may or may not be trustworthy. I am missing hateful speech and name calling and a remarkable lack of humility. I am missing lies being shared as truth. I am missing thinking up my next status or wondering what people will say. I am missing the false connection, albeit lovely in the moment, that disconnecting from the real life around me and logging into Facebook creates. I am missing making Facebook WAY more important than I should ever have given it the power to be and I am missing letting it compete with God for my attention, heart and mind. 

In short, I am missing mothing at all, friends. 

Nothing that I can't gain through phone calls and emails, texts and marco polos, and when covid allows, in person visits. Real life hoohah celebrations and grace sister reunions and actual family time face to face. Firepits in my backyard and a Christmas sing-a-long on my driveway around a firepit with my neighbors.   

You remember. Life before Facebook. Before social media. When, as Phoebe once so elegantly put it, I spent more time with the three dimensional people in my life. When we didn't spend actual time with people thinking about how we will respond to the next jab or barb or how we will filter the story about it later. We just SPENT TIME with them. 

So, I suppose if there are rumors of my death, after all, they aren't actually all that exaggerated. I have put to death, in a way, that part of myself that couldn't tear herself away. That looked for friendship and well-being and hope and peace in an app that was only ever meant to steal those things from me. The part that couldn't set healthy enough limits to keep myself from destruction. 

I don't plan on coming back. I do plan on writing. If you've followed my blog via facebook, feel free to follow me here so you can continue the journey. I've cherished the feedback from my friends during this 10 year writing journey and I know that being off facebook and more mindful in my day is opening me up in new ways. I'm excited to explore them. I'm conquering old demons that have needed to be conquered for decades. I'm choosing life. In Person. I'm not running anymore from the parts of my story that build walls. 

Hopefully never again. 

Maybe this is my official Facebook goodbye, if it ever makes it there. I don't plan on going on to post it myself. 

Instead, I'm about to go cuddle with some of my favorite three-dimensional people and then call it a night.