The Quiet Side: A Battlefront

Behind all the posts about celebrating a child with special needs, behind the cute pictures of smiles and words of inspiration is the quiet side of me where I endure in the dark. 

It's lonely here, but I'm independent and don't know how or when to ask for help. My pride stands in the way and tells me if I say "when," if I admit a struggle too big to bear alone, then I admit weakness and defeat. Pride tells me it will be complaining and that's ungratefulness; it's not godly or encouraging or pastor-like.

But is it when I snap? When I "lose-it" over spilled milk because it's been done deliberately out of frustration from my child who cannot speak? I cannot speak. I'm just as handicapped.

I shove it down and try to contain boiling water with naked hands, raw from the wringing. If anyone knew this struggle...

Not for pity's sake--pity doesn't help, it doesn't offer babysitting or call me for a break--I'm still waiting by the phone. Pity says "poor you, not me." I don't need pity. I need a real date night with my husband without the guilt or worry of leaving him with someone. I need to celebrate our 10th anniversary 2 years later with more than just dinner and a movie. 

I don't need words to tell me I'm great or the best or blessed. I need listeners without advice or judgment. It's hard to raise a child with special needs.

My son cannot form words so he acts out a lot of his communication, which can be loud and look like spoiled tantrums but I can imagine being frustrated when you can't speak your mind. The worst part is the scream--the jarring, high-pitched, give-me-your-attention-I'm-angry scream that breaks through any ounce of calm and tranquility near and far. I ignore the onlookers but it magnifies stress levels when you're wondering what they all must be thinking.  My reactionary self wants to scream back at times. I fight the nonsense of fight or flight and pick him up to soothe him instead. That must look like coddling to some. But they don't know this fight, these methods. They don't know my son.

He runs on a whim so I'm on high alert 100% when we are away from home--do you know what that's like, when family gatherings are a tense roulette of "where's Marty?" I'm constantly watching exits and counting heads and checking rooms. I don't socialize much at events, sit down for a long cup of coffee. I can't even make it to some events because we come up short figuring out loss prevention strategies or we've calculated the risks being too high in our minds. If only we had extra people sign up for Marty Duty.

My son has no friends. I'm not sure he wants friends or knows that it is good to have and to be a friend. No one asks him over for play dates. Maybe I should intentionally arrange those, like a package deal. My mom was smart, she always said about me and my sister: "One cannot go without the other." My sister is my best friend now. 

He gets red and yellows almost everyday at school because his aides don't get him. I know he's smart, just misunderstood. It takes time and energy to work with someone who doesn't speak your language. My biggest fear is that they'll suggest a lower functioning classroom and the walls will close in on me and I'll have a panic attack where I blackout. And then I'll gain my footings with steel hearted determination for inclusion. Because. It. Matters.

I worry about bullies because he can't even tell me about them. I see him picked as the villain all the time to run from when typical kids want to "play" with him. I step in and redirect and educate preschoolers who think it's just a game but I'm trying to unwind ancient evils that says "enemies are anyone different than you." And all the while stifling the twinge of pain that arises when you are trying to remove those sticky labels from your child.

He can obsess over small things and have a meltdown if not given the proper amount of time to transition. DVD loops are his favorite. But if given time and a warning that he's done he usually--usually--shuts it off...and then asks for the iPad. Or my iPhone. I've grown to really hate technology. It causes such a struggle to keep him in the real world with real social interactions. 

It's hard to share these burdens, but bearing them by myself doesn't work and getting weighed down by the load isn't fun. This place can suck at times and it's not all rainbows and unicorns. Advocacy and awareness need to happen for the parent as well as the child--we need your help. I've already mentioned some ways.

And don't take no for an answer. We are fiercely independent and are so busy taking on the battles of the world for our kid we forget about self care and community. We probably have hero complexes and think we are superhuman after a diagnosis, but grief comes in ages and stages; this is something we will never shake. And going it alone is like trying to breathe mud--suffocating.