Category: Family Essentials

Dear “Special Needs” mom, you got it all wrong

Dear Special Needs Mom at the Grocery store, yesterday… Yes, you, the one I just called a “special needs mom”, even though it is clearly your child who has the special needs. I saw you.

You probably walked away from our millisecond encounter cursing people like me, the ones who stare at you. People like me who look really, superior and super judgmental at the way you’re managing your special needs child in a public place. People like me who you worry might possibly call Child Protective Services because you’re being really rough in “that moment” – when our lives collide across a bin of $1 Scooby Snacks. People like me who you can just feel looking disapprovingly at the tone you’re using, the death grip you have on your child’s coat, the way you yanked him roughly to make your point. Yes, people like me, at the store.

I saw you. I saw that look of defiance in your eye. The gritty determination of a mom who has already had enough of her “special needs child” by 9am and still has errands to run. I saw you dare me to to say ONE. THING. about what you were doing. You were fully prepared to say something mean if I dared open my mouth, I’m sure. I’m sure it wasn’t the first time you’ve had to brace yourself for the ignorance of the general public. You probably left the house with some phrases ready-to-go for idiots like me who stare. I know, because it’s what we do.

Yes, WE.

Although from the look in your eye, in the brief second in time our eyes met, I’m pretty certain you mistook the look on my face for judgment, disapproval and disgust, but nothing could have been further from the truth. You see, today was your day to wrestle at the store with a special needs teenager who is having a meltdown, but tomorrow it will probably be me.

I’m sorry I was staring, truly, because I know how it feels. I just couldn’t look away as my mind flooded with an understanding of what it’s like to say ONE stinking THING to your special needs child and have them react immediately by smashing/throwing/hitting/breaking something, screaming mean things and forcing you to manage the scene on the fly, at the store, with everyone staring and looking super judge-y, and superior, peeking into a moment of time they couldn’t possible fathom unless they’d been there. Like I have been.

Yes, I, too, the well dressed, very put together, full face of makeup and freshly done hair woman staring at you have an alter ego who is greasy-haired, pale, has a worn looking face, wears sweats 90% of the time and grabs her kids by the coat and yanks them while growling mean things under her breath, trying to SHUT. IT. DOWN at the store. You happened to see me in my Sunday clothes, the one day of the week I bother to put any effort into my appearance, but my real me, is you, gorgeous.

As you stomped away, head held high, defiant, protective, staring straight head, unblinking, still gripping the coat of a special needs teenager who was dragging his feet, clutching his Scooby Snacks and ranting about the change in his routine, I wish you could have known that the look in my eye wasn’t judgment. Really. It was shock. Mine was the look of someone who rarely, if ever, sees her own kind and is frozen in a moment of sheer awe that there are really more of us out there. We aren’t just an urban mom legend. I wanted to ask you: Did you get into the car and cry? That’s what I do.

It’s not every day that I see a “special needs mom” outside of her natural habitat. Probably because I am too busy managing my own chaos to do more than run in and out of places and get home before the drama ensues. The days when I could take leisurely stroll through any store are all but a memory, as you know, but yes, you are a special needs mom. You have a child who, for whatever his reasons may be, has special needs.

But did you know this? You have special needs too (although I highly doubt that you allow yourself to acknowledge them even for a moment). I know that you spend your days trying to find ways to avert a meltdown before it happens, finding a plethora of distractions and re-directions, utilizing endless negotiation techniques, choosing your battles, standing your ground, protecting your other children and keeping as much “normal” as possible in the house.

I won’t even mention the kind of fears and worries that occupy your mind – will he ever find friends who truly love him? Will he ever find love? Is he going to kill himself or harm someone else when his emotions overwhelm him and I’m not there to talk him down? How do I make him understand that everyone is a bully and that, yes, the joke is always on him, because he doesn’t get it. Will my other kids grow up to be emotionally healthy, normal people after growing up seeing this constant madness? Am I the one who did this? Will I have to do this for the rest of my life? Am I making it worse? I could go on, but you already know what occupies the mind of a special needs mom, as I do.

I knew you thought I was disapproving of the way you jerked your son angrily by his coat while hissing at him that you WOULD. NOT. put up with his tantrums, which, as you and I both know seem to come out in their full glory in public places. I could see it in your eyes and when you marched away, I felt terribly. I’ve been you. I AM you. It just so happens that today was  not my day to be you. Although I had no doubt in my mind that my turn was coming.

Is anyone taking care of YOUR special needs? That’s what I thought as I wandered down the aisle, lost in my thoughts. I know how often I feel alone in all of this, so I know you have those moments too. We should get coffee. Your greasy hair and pale face and sweatpants and the look of utter determination on your face hit so close to home that I could only stare, like one of those idiots we hate. Those “normal” people who make us dread going to the store because they call the cops when our kids decide to writhe around on the floor of Home Depot and scream like a swarm of bees is attacking. Those people who couldn’t handle one hour in our shoes, and yet blame US for having kids who just don’t get it, may never get it and need us to FORCE them to ACT like they get it, at the very least, and COMPLY, PLEASE, while everyone is staring. Don’t lump me in with them.

I hope someone is taking care of your special needs as you care for your son’s. I hope that this experience, raising a child with special needs, makes you stronger, braver and wiser person, more understanding person – as it has me.

So, dear, special needs mom at the grocery store, please accept my apology for the look on my face. It’s not often that I feel like there’s someone out there who really gets what it feel like to parent a special needs teenager and it was like a shock to my system, knocking me into dumbfounded speechlessness. I turned the corner and there you were, wrestling a teenage boy who was bigger than you, managing his drama and still getting the shopping done.

I wasn’t judging you. I think we could be friends.

When Making Lunch Changes the World

If your house is anything like ours, school mornings are somewhat chaotic. This morning’s weeping and gnashing of teeth was over school lunches. We can’t afford to buy school lunch right now, so we pack lunches (remember the good old days when people preferred homemade things??), which is much less exciting, apparently.

As EDJ stomped around in anger because “we never have any good food” my husband suggested scraping three dollars out of our spare change jar to let him buy lunch, but it turned out that we didn’t have enough, so I got up to find him something to eat for lunch (yes, he’s a teenager and could, presumably make his own lunch, but it wasn’t in the cards today- I could already tell). You know how those days go.

As I scrambled around to scrape together something for lunch that wouldn’t end up being thrown away, EDJ threw some shade at me about how he hates peanut butter and jelly (which is all I could manage, as we need to shop, but haven’t gotten paid yet- aaaand you know how that goes), and that he fully intended to throw it away at school.

We went back and forth about the value of food and its cost, priorities and perspective, an appreciation for what we have even when it’s as humble as a PB&J and how not everyone can pay for school lunches and how that is OKAY. Of course, when I say “back and forth”, it was mostly me doing the talking as EDJ remained (mostly) silent and staring in a way that reminded me of the way people’s eyes would glaze over when looking at those magic pictures from the 1990’s that made images appear and float in front of your eyes.

After he left for school, I sat down to do my devotions and was reading in John 6, about the little boy with the five loaves and two fish. You know the story- Jesus had been teaching and everyone had come from far and wide, and apparently no one had thought to bring any food into the desert.

When Jesus suggested buying them food, Philip points out that they don’t have enough money to buy food for everyone (we didn’t even have $3, so I felt his pain), but they did have “five loaves of barely and two fish”, offered by a boy in the crowd.

Suddenly it struck me — someone had made that lunch for him, most likely the boy’s mother. My mind wandered as I thought about what that mother may have gone thought that morning as the boy headed out to see Jesus. Did he argue with her about how he hates fish? About how he’s sick of eating barley bread all the time? I wondered if he had complained that her fish always tasted funny and how all his friends were stopping at flafel the vendors to pick up something better. I wondered if he told her he’d throw it away once he was away from her.

I thought- maybe after he’d left, holding his five loaves and two fish away from his body as though it were covered in spiders, if she’d sat down like I had and beat herself up for not being a better mother and for forgetting to pick up his favorite lunch foods. Maybe she’d sent him out of the house with resignation, imagining how he’d toss the food that the rest of the family would gladly have eaten without complaint and what a waste it would be. Maybe she’d just been glad he was gone for a few hours. (You know how that goes).

Then, I remembered Jesus. He’d taken those five loaves and two fish and had performed one of His greatest miracles ever recorded – feeding well over 5,000 people (the Bible only counts the men) with that humble, packed lunch that some mother, somewhere in time, had made that morning. Who knows what she went through, but if she were anything like me, she may have had a morning that made her think: Why do I bother to do this at all? Will it ever get any easier?

And yet, because of the faithfulness and, yes, even the “routine” of one mother, who had made a thousand thankless lunches before that and a thousand thankless lunches after that day and may have had a thousand other arguments with her son about how it’s never good enough- she got up and did it anyway. Why?

Did she know Jesus would perform one of His greatest miracles with her humble, packed lunch? No. In fact, it’s highly probably she never had any clue what the Lord had done with her thankless lunch, made on a morning when she felt especially frustrated with it all. She did it because that’s what loving mothers do – they keep moving ahead because they love, because they see things their kids do not, because they’re willing to invest in their children, even when it’s not gratefully accepted at the moment.

However that investment pays off someday isn’t the concern right now. We do what we know to be the right thing, our very best, in spite of the struggle, the monotony of the routine, in spite of how others around us accept the best we have to offer- we’ve given it to God, and who knows- maybe that one, frustrating morning where we did the same thing we do every day will become one of the greatest events ever recorded in history- because we got up and faced another day thinking all we were going to do was pack our kids a lunch.

Stay Blessed!

~Alicia